My Toledo Vacation — August 1986

In my previous blog post I talked about my friend Barbara Alkema who might be my new roommate along with her adult son Josh and their 4 cats. You can read the details about that here. I mentioned in that blog that in 1986 Barb drove from her home in Toledo down to Indianapolis, picked me up in my van, and drove me back to Toledo to spend a week vacation with her and my friend Jim Grubs. I had met Jim online on CompuServe on a disability forum. He had a type of muscular dystrophy different from mine. Barb was his live-in caregiver. We all became friends online. This blog is the story about that vacation that I spent with her and Jim.

The Adventure Begins

I don’t remember the exact dates but it was in August 1986 that I went to visit my friends Jim and Barb who lived in Toledo. Granted one doesn’t typically think of Toledo as a big vacation destination. John Denver even wrote a silly song about what a boring place it is. YouTube
Actually Jim lived in Sylvania which is a suburb of Toledo. Anyway this was a really big deal for me because it was the first time I had been anywhere overnight or under the care of anyone other than my parents. It was a big milestone for me in my independence. It served as proof of concept that let me take other out-of-town trips with other friends years later.

The drive to Toledo was uneventful. I don’t really remember any details of it. Google maps (which didn’t exist in those days) tells me today that it is a 224 mile journey that should take three hours 48 minutes.

Barb rearranged some furniture in Jim’s bedroom and they rented a hospital bed for me for the week. We took my Hoyer lift and my oxygen machine. This was decades before I had a CPAP, ventilator, trach or G-tube. I just had oxygen that I used at night. Jim did as well although I think he may have had a CPAP I don’t recall. Barb did double duty taking care of both of us. We visited with friends of theirs and went out to dinner a couple of times.

Catching A Ferry

The big event of the week was our trip to South Bass Island about 5 miles into Lake Erie. There is a little resort town called Put-in-Bay on the island. They have a fancy marina with lots of expensive boats to look at and tourist shops you can browse. The main attraction on the island was the “Perry’s Victory and International Peace Memorial”. It is a National Park Service facility and the website (which did not exist in 1986) describes it as follows “Perry’s Victory and International Peace Memorial was established to honor those who fought in the Battle of Lake Erie, during the War of 1812, and to celebrate the long-lasting peace among Great Britain, Canada and the U.S. The Memorial, a Doric column, rising 352 feet over Lake Erie is situated 5 miles from the longest undefended border in the world.” Link to park service website for Perry’s Victory Memorial

We would drive from Toledo to Catawba Island just north of Sandusky. There you catch a ferry boat out to South Bass Island. You can click on the maps in this blog for a larger version and each has a link where you can to go to Google maps to see more details.

When we got to the ferry landing they told us that we could not take our vehicle with us because they had already taken over a large number of vehicles for the day. There’s only so much room for cars on the boat and there was a chance that there would not be room for us for the return trip. So we parked the van at a parking lot about a block away and got on the boat just in our wheelchairs with Barbara on foot.

I had my VHS camcorder with me and I shot video along the way. You can see the YouTube version at the end of this blog. Some of the images in this blog are screen grabs from that video. Unfortunately the railing on the ferry had a bar exactly at the height of my video camera so it was a little bit difficult to shoot video out across the water. Most of the passengers road up high on an upper deck that gave them a great view but we stayed on the main deck with the vehicles that were going across. A couple of seagulls flew alongside us on the journey. We could see other boats out on Lake Erie and another ferryboat passed us going the other way.


Growing up severely landlocked here in Indianapolis, being able to look out to the horizon and see endless water is a strange experience for me. I’ve never been to the ocean. I have been to Chicago on a couple of occasions and seen Lake Michigan but I had never been out on it in a boat. South Bass Island is only 2.9 miles from shore so we could see it from the shore where we departed. But there were directions you can look out into the lake and it was water all the way to the horizon. For most people it wouldn’t be a big deal but it was a new experience for me.

I don’t know how Google maps computed that ferry transit time in the map above. It says 20 minutes on foot and 31 minutes by car. Maybe it takes longer to load your car onto the ferry than to walk on 🙂

When we got to the landing at the south tip of South Bass Island we realized we were in trouble. We were at the wrong end of the island. We had no idea how far we would have to walk. Most people who got off the ferry went to the bicycle rental stand but that wasn’t going to work for us. As this Google map below shows, it’s 2.2 miles. Had we been in the van it would’ve been a six minute drive from one end of the island to the other. On foot it’s 46 minutes. And with two electric wheelchairs and an aide on foot it was probably longer than that. Of course we didn’t have Google maps in those days or smart phones with which to check Google maps. Not knowing what we were up against we had no choice but to set out on foot.

We passed by a small airport on the island and sat and watched a couple of private planes land and take off. There is also an air service called Island Airlines that will take you out to the island. Jim saw one of them flyover while we were on the ferryboat. Somewhere along the way we came across a little hamburger stand with some picnic tables sitting in front of it so we stopped and had lunch. You can see the Perry Monument off in the distance and it looked like it was just over the hill a bit. But I had no idea just how tall the thing really was. (Again we couldn’t Google it.) We were still over a mile away.

When we finally got to the town of Put-in-Bay it was very nice. There was a nice marina with lots of expensive looking boats. One of them looked like a big offshore racing boat. Others were fancy cabin cruisers. We didn’t really spend any time in the tourist trap shops. We went on to the big Memorial to get a good look at it. Now we could see just how huge it really was. There was a small shack that was sort of like a mini museum. I shot some video of a really cool scale model of the USS Lawrence which was Commodore Perry’s flagship during the battle of Lake Erie. His motto and battle flag bore the phrase “Don’t Give up the Ship”. This was a paraphrasing of the dying words of Capt. James Lawrence who was a friend of Perry and who had died in an earlier battle in the war.

We hung out in the park for a while and it was very peaceful. The island has a very narrow Isthmus right at that point and you can see water on either side. The bay itself is very calm compared to the waters of Lake Erie.

We Are Stranded

The problem now was how to get home. There was no way we could make it back to the other end of the island where we had landed in time to catch the last boat home. Fortunately there is a ferryboat that leaves directly from the bay. Had we known what we were doing, we would’ve taken the boat that landed there. So we purchased a ticket to go back on a different ferry from this different departure point.

There was another problem however. This ferry did not go back to the Catawba Island Terminal where we left the van. Instead it went back to a place called Port Clinton which is 9 miles away from where the van was. We didn’t have any other choice. We had to take this ferry home.

We depart from the north side of the isthmus and had to go around the east end of the island to get back to the shore. It gave us a nice scenic view of the island. On the trip out there were seagulls that flew alongside us but on the trip home there were many more birds and they would fly up to the rear of the ship and the passengers would throw breadcrumbs to them. You could buy a package of breadcrumbs on the fairy. The birds would swoop down and catch them in midair. One person tried holding out their hand palm up with food in it but I never saw a bird swooped down to take it. I wouldn’t have done that.

When we landed at Port Clinton we called a taxi and Barb left Jim and me alone in the parking lot while she went to get the van 9 miles away. Then she drove the van back to pick us up. There was another guy there in a wheelchair with his own van but there would be no room for three wheelchairs in his van so we didn’t even bother to ask him if we could bum a ride. There was some sort of fast food restaurant across the street and we thought about going to get something to eat while we waited but we decided it was best to just stay put. We felt safe where we were.

There are actually 2 different fairy routes that leaves the north side of the island and they go to 2 different locations on the shore. One of them went to Marblehead and the other to Port Clinton. I couldn’t remember which route we went but I did remember that Barb said the taxi ride was 9 miles. So in researching for this blog I used Google maps and discovered that it was Port Clinton and not Marblehead where we returned. Marblehead is 11 miles from Catawba Island according to Google maps. Recalling this whole experience from 1986 has really opened my eyes to how dependent we are in this day and age on the Internet and all of the resources it provides. It makes me wonder how we ever survived without it.

The journey back to Toledo was uneventful. When we got home we ordered some pizza. We were all pretty exhausted from our adventure especially Barb who had walked the length of the island and still had to put Jim and me to bed. We had plans for the next day to drive to Detroit to visit a CompuServe friend of mine but we decided to cancel because we had already had enough adventure for now.

Home Again via Chicago

Barb and I left Jim in the capable hands of his backup aide Dede and we drove onto Chicago to visit other friends there. We had a great time in Chicago for the weekend. I don’t remember why but I did not shoot any video for this leg of the trip. Now I wish I had. Didn’t take any photos either.We got in a huge traffic jam coming through the interstate in Chicago. We also drove by Soldier Field where the Indianapolis Colts were playing the Bears in a preseason football game. I thought it was ironic that I was in town for a Colts game without tickets to see it. We got lost once along the way trying to find the hotel where I had booked us a room. We eventually made it to the right place and checked in. I had my laptop with me and I logged into CompuServe to touch base with friends. They started teasing me about spending a weekend in a hotel room with a nurse. Barb didn’t appreciate that. Barb met up with a friend of hers who lived in Chicago and he hung out with us and spent the night. I don’t remember his name or how she knew him. I had dinner with a friend from CompuServe. Sadly I don’t remember her name either.

This was my third trip to Chicago. The first was a family vacation when I was 13. I always tell people “Yeah… I was in Chicago in ’68. The scene with all the hippies in Grant Park was wild.” The truth was that vacation was the week before the infamous 1968 Democratic National Convention with all of its riots and controversy. And I neglect to tell people I was only 13 at the time and was on vacation with my mommy and daddy.

My second trip to Chicago had been just a few years prior in 1981 when I was invited to exhibit some software in the “John’s Hopkins First National Search for Computer Applications for the Handicapped“. My software VersaScan won seventh place in the Midwest regional and was one of the top 100 in the country. (See page 276 of this PDF “Communicating with Tokens” by Chris E. Young) That event was held in the Museum of Science and Industry so I got to spend lots of time there as well as my other favorite museums.

Whenever I’m in Chicago I have to visit the museums. My favorite place is the Adler Planetarium which sits out on a little peninsula on Lake Michigan. I also like the Shedd Aquarium. I’m pretty sure we went to the Planetarium but I don’t think we visited the aquarium this time. [Update: After reading this, Barb reminded me we did go to the aquarium and now that I think about it more, I do remember parts of that adventure as well.]

Getting My Eyes Maxed at the OmniMax

I definitely wanted to go to the Museum of Science and Industry because they had just installed a new OmniMax Theater. If you’ve never heard of it, OmniMax is a domed version of IMAX. Some theaters refer to it as IMAX Dome while others continue to use OmniMax. The film was a NASA documentary called “The Dream Is Alive“. This 1985 film was made during space shuttle mission STS 41C aboard the space shuttle Challenger. Ironically in January 1986 a tragic accident destroyed the Challenger and its crew of seven and the dream was almost destroyed with it. It would be two years before shuttles flew again. It was bittersweet to see the Challenger in such a magnificent format.

We didn’t have time to tour the entire museum. We just went directly to the OmniMax theater. Unfortunately when we got there, the show was sold out. Some nice man who was in line with his family gave me his ticket for free. Barb waited in the lobby for me. The show was only about 45 minutes. It was the first IMAX film I had ever seen. The OmniMax Theater screen is huge. It’s like you took a dome and tilted it on its side and suspended it above the stadium seating. If you would stare at the center of the screen and did not look side to side, the image would fill your entire field of vision. The multichannel digital surroundsound was state-of-the-art. You can feel the floor shake when the shuttle took off. I’ve got a DVD of that film but of course watching it at home even in HD with my home surround system is nothing like IMAX.

I was instantly hooked and I’ve been an IMAX addict ever since. I wished we had IMAX theaters in Indianapolis. In 1996 my wish came true. The Indianapolis Children’s Museum opened a theater called the CineDome. While not technically IMAX nor OmniMax, it was much like a smaller version of the OmniMax in Chicago with a domed screen. Although built by iWerks and not IMAX it would still show 1570 format films some of which were IMAX films. In 2002 the Indiana State Museum opened an IMAX with a traditional flat screen but it had 3D capability. The CineDome closed in 2003 and the museum turned it into a dinosaur exhibit called Dinosphere which is pretty cool but I still miss the CineDome. There are now 3 other IMAX theaters in the central Indiana area but they are smaller digital IMAX facilities as part of a multiplex of other theaters. Purists call these smaller theaters lie-Max but I still like them. Still they don’t compare to the large IMAX at the Indiana State Museum or the Chicago OmniMax. In 2017 the Chicago OmniMax theater was renovated and the IMAX film projector removed. It was replaced by a laser digital projection system and was renamed the Giant Dome Theater. Maybe someday I will go back and see how the upgrade looks. But I still have fond memories of the original OmniMax and my first IMAX experience.

Cherished Memories and More to Come

The journey home to Indianapolis the next day was uneventful. Barb drove back to Toledo. We stayed in touch but I did not see her again until 1990. By then she had a boyfriend and a baby. She was leaving Jim to move to Texas. She did return to Toledo a few years later to care for Jim but sadly he passed away in 1995. She then went to school and got a job doing the social work. We’ve stayed in touch via Christmas cards, email, and an occasional phone call. I will see her again in a couple of weeks when she will come visit and we will decide if she’s capable of helping out as my caregiver. If so she and Josh and their cats will move here. I really hope it works out. Regardless of what happens, I will always cherish these great memories we’ve made together for over 30 years.

YouTube Video of Trip to South Bass Island

I May Have Found a Roommate

I may have found a roommate to move in with me.

The day I posted my previous blog saying that I was looking for one or two people to move in with me and live here rent-free in exchange for being my part-time caregiver, I got a Facebook messenger message from my old friend Barbara Alkema saying “How physical is the job?”. I totally freaked out.

I’ve known her for over 30 years. She currently lives in West Virginia with her adult son Joshua and 4 cats. I had thought about asking her if she would consider coming to Indiana but I thought it was very arrogant of me to presume that someone would pick up their life and move to a different state for me. Barb points out that I sent her a link to the blog hoping she would “take the bait”. Well maybe yes but I sent the link everywhere I could think of. In addition to posting on Facebook I sent emails to lots of people including her. Unfortunately I had an old email address that was no good so when I asked her about her current email then I sent her the link. The idea that she might respond positively seemed like a ridiculous fantasy.

This was much better because she was volunteering based on my open casting call and I didn’t look like I was an egotistical ass asking her to uproot her life and move to a different state.

Who Is She?

Back in the early 1980s before Al Gore invented the Internet (okay I know he really didn’t) there was an online service called CompuServe. You would use dial-up modems just like AOL which appeared a few years later. There were live chat rooms, discussion forums, news pages, and you could book travel just like you can on the Internet today. But it was all plaintext with no pictures and you connected at 300 baud. To compare that when AOL and other Internet services stopped using dial-up modems they were running at 56,000 baud. Today’s Internet is thousands of times faster.

There was a disability discussion group and that’s where I met a man named Jim Grubs. He was 50 years old, lived in Toledo Ohio, and had some kind of muscular dystrophy. It wasn’t the kind that I have. Jim’s parents were in their 80s and could not properly care for him but they had some money and so they hired a full-time live-in caregiver named Barbara.

I communicated with them both online through CompuServe and occasionally by phone. One time Barbara took the weekend off from caring for Jim and left him in the hands of a backup aide named Dede. She drove down from Toledo to Indianapolis to spend a few days with me. We had a great time together. We went out to dinner with my friends Rich and Kathy Logan and then went on to a comedy club where we saw a new rising star in the comedy world. You might’ve heard of him… His name was Jerry Seinfeld. This of course was years before his TV show. We had a great time. The next day Barb and I went over to the Speedway to tour the museum and who did we run into? Jerry Seinfeld! We told him we really enjoyed his show the night before. I wish I had the presence of mind to ask for an autograph.

In August 1986, Barb came back to Indianapolis and picked me up in my van and drove me to Toledo to visit with her and Jim for a few days. We took a trip on a ferryboat out into Lake Erie to a place called South Bass Island and to a resort town called Put-in-Bay. There is a huge lighthouse on the island that commemorates Commodore Perry’s victory in the battle of Lake Erie during the war of 1812. We also had a great time visiting with several of their friends and then backup aide Dede took over and Barb and I drove from Toledo to Chicago where we each visited some friends there. Then she drove me back to Indianapolis. I’m going to do an entirely other blog post about that whole adventure including a YouTube video of some VHS tape I shot on her trip out to the island.

The last I saw Barb in person was in 1990. She had quit working for Jim and was on her way to move to Texas with her seven-month-old baby boy Joshua. I remember she was here the day that my Grandma Osterman went to the hospital for the last time before she passed away.

Barb later returned to Toledo to work for Jim briefly but he passed away in 1995. Barb and I stayed in touch over the years. By email, Facebook, and the occasional phone call.

She went to school and got a job doing social work. A few years ago she developed health problems and had to go on Social Security Disability, Medicare and Medicaid. I wasn’t really sure if she was in good enough physical shape to help take care of me or if she would be interested in moving here. I did know that they were struggling financially but like I said, I thought I would be an idiot to presume she might move here even if she could.

What Is the Plan?

Over the past couple of weeks we’ve talked over all of the ins and outs of her moving here. She of course discussed it with her son Josh who has been a Facebook friend of mine for some time. He is in his late 20s. He’s a bit of a nerd like me. Loves sci-fi. Hates Trump. In a way more nerdy than me. He plays Dungeons & Dragons which I don’t. I’m sure we will get along just fine. Josh currently has a crap job working in a drugstore making crap wages. He was already looking for a better job so he will have to find one here. He has friends in West Virginia that he plays D&D with once a month but they say they can Skype with him or he can come visit sometimes. He also plays online with other people which you can do anywhere. He is on board with the plan.

I’m not wild about the idea of 4 cats coming with them because I’m not much of a cat person but given a choice between A) Living with a longtime friend, her son who is cool, and four cats versus B) Living in a nursing home… I will take “Plan A” any day.

You might think that we live in the United States of America but actually we live in a bunch of egotistical local jurisdictions that each think they know what’s best for their constituents especially when it comes to healthcare. While Medicare is completely federal, Medicaid varies state-by-state. We will have some hoops we need to jump through to get her eligible for Indiana Medicaid but after consulting with my lawyer we think we’ve got that one figured out.

Barb has plans to go visit a friend in a different part of West Virginia the week of April 6. The current plan is that she will spend a week with that friend that then take a bus here to Indianapolis and hang out with me for a week or so. It will probably be too strenuous for her to get me up and bathed and dressed in the morning but we are hopeful she will be able to put me to bed at night which is much easier. Her visit will verify just what she is and is not able to do. If that goes okay then she will go back home and begin to pack. Josh may come before her to start looking for a job.

I currently get nursing services from 8 AM- 6 PM Monday through Friday but that’s only because Carol is living here as my primary caregiver and she has to work. With Barbara living here full-time and not working I will no longer be eligible for that kind of nursing support. I will end up going back to having a home health aide come in for a couple of hours every day to get me up and dressed. We can also get respite nursing to come in and take care of me if Barb needs to go somewhere like a doctor appointment. We would essentially be back to the way things were with me and my dad before he got sick this past summer. My weekend aide has that she would love to come back and work for me seven days per week the way that she did for the past two years before we got nursing help.

In my original blog posts I said that I would need more than one roommate so that they could share responsibilities. However because Barb doesn’t have any friends around here and doesn’t work it will not be a burden for her to be here full-time. Josh can help out around the house as well as he already does where they live in West Virginia.

I took a tour of my house shooting video on my iPhone and sent it to them to show them what the house looks like. Barb will take over the main bedroom that used to be my parents room and Carol is currently using. We have a junk room which contains my mom’s old sewing machine, a worktable that my dad used to build my gadgets, and a closet full of my ventilator supplies. We will clean that room out and it will be for Josh. We’ve already cleaned out my office closet in anticipation of moving stuff out of the junk room. Karen will probably take mom’s old sewing machine. We are going to get rid of one of the sofas in the family room and the organ which nobody plays anymore. That will give us room to put stuff in the family room.

Barb will bring some furniture of her own and some she will put in storage here. They will bring their beds. She has a hutch she likes that we can probably put in the family room. She has her own sewing machine. She sells stuff she makes on esty.com at a store called MakeItSewByBarb. We just priced what it will cost to rent a U-Haul truck and it’s going to be expensive but it’s cheaper than hiring a real mover.

She is excited that we have a dishwasher. Josh is excited that I have a 3D printer he can use to make D&D figurines and map pieces. I’m excited that they have a 60 inch TV they are bringing. Mine is only 47 inches but it will do 3D so we will keep them both. We both subscribe to Netflix, Hulu, CBS All Access and Amazon prime so we can consolidate those and save some money. I will probably cancel some of the premium channels on our cable. I will probably cancel our landline telephone since we all have cell phones. There are a lot of details to work out but I’m extremely hopeful that we can do it.

So send up a prayer or two that we can make this work. This is going to be a win-win situation for both of us if we can work out the details.

I need your help to find a roommate. Actually two roommates.

I need a roommate. Actually I need two but at least one to start with. I’m writing this blog directed towards friends, family, friends of friends, friends of family, family of friends etc. in hopes that someone knows someone who can move in here and help be my caregiver. The idea is that they would live here rent-free with free utilities, free Internet, free cable and use of the house in exchange for part-time responsibility of taking care of me.

I currently can get nursing care from 8 AM until 6 PM on weekdays. I also have a home health aide who comes on Saturday and Sunday morning for 2 to 3 hours. She gets me bathed and dressed and up in my chair like the nurses do. But because of the rules and because I have a trach in a G-tube she cannot be alone with me. So these hypothetical roommates would be required to be here evenings and weekends. I may also be able to get some additional nursing hours called respite hours but they might only be 10 or 12 hours per week. These respite hours are not flexible so we would have to come up with a regular schedule

I need two people because it’s a full-time endeavor. If one person does it, they wouldn’t have a life beyond going to work while my nurses are here and taking care of me the entire rest of the time. But if I have 2 people sharing the duty it becomes a much more manageable job. Currently my sister Carol is doing all of this on her own. The idea is that we will recruit a roommate who will share the responsibilities with her and then if it works out we would recruit a second roommate and Carol would be free to move on with her life

Anyone with normal physical ability who can follow simple instructions can do the job. It doesn’t have to be a nurse or a trained caregiver. None of this is rocket science. I can train them to suction my trach and do G-tube feedings. I can train them to put me to bed using my Hoyer lift. They would have to undress me and put a diaper on me. Is a simple task to put me on the ventilator overnight. While it’s quite a job to get me up and dressed, the nurses and aides will do that. Putting me to bed is relatively easy. It’s a law of physics that is easier to tear things apart that it is to put them together 🙂 The only nasty part of the job would be getting me on and off a bedpan and getting me cleaned up. While wiping my ass is not a fun job, as the children’s book says “Everyone Poops“. You wipe your own ass and it’s no different than wiping mine.

So what I’m asking you to do is to look around and see if you know of someone who might be interested in the job. At some point I will probably do some advertising to recruit a college student or perhaps even a nursing student. It doesn’t have to be a nursing student but they might be more inclined to take the job. It would be much better if it was someone that I knew or someone that you knew and could say that they were a decent reliable person.

That’s the short version of the story. But anyone who knows me, knows that I can’t tell a short story so I invite you to continue reading while I give you all the background on how I came to this point and why I need these roommates.

This idea is fraught with problems. Where do I recruit such people? How do I trust them? Sure we can do a background check or a drug test but that doesn’t mean I will find the right people or that I will find two of them and all three of us get along. What do I do when one of them quits? What are the legal issues? Can I write a roommate agreement that is not 80 pages long like Sheldon Cooper on “The Big Bang Theory”? These are all questions I can’t answer right now. But I have to pursue this idea because it is the only way I’m going to be able to avoid ending up in a nursing home.

What did he say? Nursing home? Oh no!

For many years whenever I mentioned to someone that at some point in my life I may end up living in a nursing home, the most common reaction has been a very quick “We can’t let that happen.” It takes a variable length of time however before the person saying that realizes there really isn’t a whole lot they can do to prevent it if it comes down to that. Let’s face it I am an extremely high maintenance person 🙂

In recent years I’ve become even more so. Basically I need someone to take care of me 24/7. It is not at all safe for me to be alone for any length of time. At one time it was common for mom or dad to leave me alone for up to an hour or two while they would run an errand. But in recent years it became less and less safe for me to be alone. Dad began scheduling his trips to the grocery or to the doctor at a time when my home health aide was available to take care of me.

Once I got my trach, things changed significantly. According to the rules, a home health aide or certified nursing assistant (CNA) is not allowed to deal with my trach or G-tube. In has to be a real nurse. A CNA is not allowed to be alone with me. That meant that dad had to change his schedule and cannot leave the house while the aide was here. Fortunately we were able to recruit a nurse who was permitted to care for me. He would come regularly one day a week and had some flexibility that he could come on other days as well.

My need to have someone here ALL of the time was clearly illustrated in an incident about a year ago. Dad went outside to do some yard work. He was only gone about 15 minutes before I found myself in real distress needing my trach suctioned. This was despite the fact I had told him before he went out the door that I was okay. I really thought I was.

Dad was able to do it these past few years basically because he didn’t have a life beyond caring for me. When he did go to a retirees meeting or go out to lunch with a friend on occasion we had to recruit other friends to stay with me. But dad didn’t have much of a social life so he didn’t have to give up much to be here all the time. In my eulogy of him last month I told the story of him coming to visit me in the hospital despite terrible weather that should’ve kept him home. His response was simply “I didn’t have anything better to do.” And that was the truth. I could rely on his care 24/7 because he didn’t have anything else to do.

That’s what it takes to keep me out of a nursing home. And that’s why all the people who say “We can’t let that happen” really can’t replace him. My other friends and family have a life. They have jobs and friends and commitments. They can’t devote their entire life to me and my care no matter how much they don’t want to see me in a skilled nursing facility.

When dad became ill this summer, my sister Carol moved in with us to help care for the both of us. She did this even though she herself was battling some very difficult health problems. She had surgery for throat cancer which was completely successful however the doctor still recommended an extensive round of radiation treatments which were devastating to her. Although she is back at work she still has a long road of recovery ahead of her. She’s been unable to eat enough to keep her healthy and recently had a G-tube installed so that she can get sufficient nutrition to heal. Her sacrifices for dad and I over the past many months have been phenomenal and I am totally lost for words to express how much it has meant to me.

Even when dad was doing well and Carol had not yet begun her difficult radiation treatments, I found myself at times overwhelmed at the thought of what she was going through to take care of us. I’ve needed pretty much this level of care my whole life. While I understand that mom and dad had made sacrifices to care for me for 60+ years, they are my parents. Taking care of your kids is part of the job. I don’t want to say that I ever took them for granted because I didn’t. But it just seemed natural that we had the kind of relationship that we had. On the other hand although Carol is family, what she has done for me in these past months has been way above and beyond the call of duty.

When all of this started, Carol expressed her commitment to stick with us to the end that we knew was coming from my dad but not necessarily for my entire life. We always knew that this would be a temporary situation for me. I intend to do everything I can to honor that concept that she wouldn’t be here forever.

In the late 1980s my grandma Osterman lived with us through all of her final health issues for about five years. The stress on my mom being a caregiver for grandma and I was overwhelming. Perhaps you didn’t see it but during those years it changed her personality. Much of the time she was on the verge of a nervous breakdown. We all made sacrifices in those days but we understood that it was important to grandma to be here among family and it was important to my mom that she be able to care for her. After grandma passed away in 1990, mom recovered and became again the happy, kind, giving person that she had been prior. Dad and I spoke many times that we wanted to make things as easy as possible on Carol having seen what it cost my mom to take on such heavy responsibility.

Throughout the process, we’ve been exploring possibilities for my future once dad was gone and it was time for Carol to move on with her life. Although a skilled nursing facility was at the bottom of my list of options, unfortunately we had to explore it first because it was a bit of an emergency. It was questionable whether Carol would be able to continue to help out while recovering from her surgery and radiation. At one point she did move back home and dad and I were on our own. Fortunately dad was still in good enough shape that we could get by with the nursing help for several weeks. If dad had gotten worse before Carol was ready to come back, I needed somewhere to go.

When we weren’t certain that Carol was going to be able to continue to help out, I went looking for an SNF that could handle me. We had help from my caseworker from an agency called CICOA who handles my Medicaid paperwork. It turns out that finding a facility that will take someone who uses a ventilator is not easy. Most SNFs don’t have the staff to handle it. While anyone could do the job in my home, because of liability and other issues such a facility has to have highly trained people. I don’t really use the ventilator to keep me alive. It’s really just like using a CPAP or BiPAP to help me sleep at night. Before I had the trach I used a CPAP. But once you say “the patient is on a ventilator” that triggers all sorts of problems.

We finally found a facility called Greenwood Health Care in Greenwood. My friends Rich and Kathy drove me down there one afternoon for a tour. It was a reasonably nice place. I would have to share a room with another person and it would be a small living space but there is ample common area that I can hang out with the other residents. The minute you say “nursing home” it immediately conjures up all sorts of bad images. Someone like me doesn’t want to end up stuck in some wing with a bunch of Alzheimer’s patients.

One of the key things that I asked the staff in Greenwood was “Are there other people here like me? Are there people that, for the lack of a better term, I would consider peers? Are the people who are here because of their disability not because of age or medical condition?” She said that in the respiratory unit there were naturally lots of sick people. However in the unit adjacent to that there are people like me and I would have ample opportunity to make friends and interact with them in the common areas. That was a great relief to me.

I came away from the tour feeling greatly relieved that even if I had to take this worst-case scenario of a nursing home that I could get by reasonably well.

Obviously a nursing home was not my first choice. What I really would like to do is be able to stay in this home which I’ve lived in for 60 years ever since I was three years old. We talked about the possibility of my sister Karen, her husband Terry, their son Cole and their friend/roommate Dawn moving here. Even though it would be a little bit easier on them because there are more people to share the load, uprooting their family and moving here is just too much to ask.

I talked to my case manager and asked her what is the maximum amount of nursing hours she believed I could possibly get. She indicated that I might get 45-50 hours per week of what is called “preauthorization” or PA hours such as I was getting from 8 AM – 6 PM currently. And additionally 20-30 respite hours per week. That just isn’t enough to get me 24/7 care in my home.

Another option is to find one or two other disabled people each of whom could get authorization for maybe 10-12 hours per day. Then between all of us combined together we could get 24/7 care by utilizing each of our authorizations sequentially. That has worked in other cases. The problem is we would have to find someone very much like me who needed nursing care for a trach and a ventilator and not just a regular home health aide. Finding two or three such people has pretty much proven to be an impossible task.

Another option is what’s called a residential group home. This is a regular house managed by some agency that would have three or four disabled residents sharing caregivers 24/7. Again the problem is finding one that would be staffed by people who can handle the trach and the ventilator. To the best of our ability we have not been able to find such a group home. I had other reservations about the group home setting. I’ve heard some bad stories about them that actually made a nursing home sound like a better place. But given that there aren’t any group homes that can provide the level of care that I need, this one is off the table as well.

I have been exploring other Medicaid programs beyond the one that I currently use. But I don’t think any of them are going to qualify me for 24/7 care simply because if there was such a program, you wouldn’t need group homes to exist or at least not in the numbers that they do. I’m still looking into alternatives but I’m not at all hopeful that there are such programs.

All of our efforts have been directed at trying to get more nursing hours. We explored the possibility of trying to get private funding to hire more nurses. All of those people who said “We won’t let that happen” might be able to contribute something financially to hire more help. But I keep going back to the fact that I don’t really need a nurse. The only reason it has to be a nurse is because that’s the only way Medicaid will pay for it. I just need a reasonably able-bodied average strength person who won’t freak out at the idea of wiping my ass. And recognizing that one person can’t do it all alone… I need two of them

One of my nurses told me the story of another client she once served who had a college student living with her. The student would take care of her when the nurses were not on duty. That was the inspiration for the plan that we are pursuing.

I don’t need a place to live. This house is paid for.

I don’t need nurses. Any able-bodied person can do it.

I don’t need other disabled roommates.

I just need someone to be here when my nurses are not and to do some basic care.

While looking for the exact proper solution to the problem it occurred to me that what I was looking for was a unicorn… A beautiful mythical creature that probably didn’t exist. But the odds of finding and able-bodied roommate to come here and sharing the responsibility of caring for me doesn’t seem like such a long shot. I think I’m now looking for a horse instead of a unicorn.

That doesn’t mean this is going to be easy. Finding the right people will be hard. Finding someone who can get along with me and the other caregiver will be hard. Whoever we get is likely not going to stay forever so there will be turnover. These are the issues that Carol seemed most concerned about when I proposed the idea to her. They concern me as well. But I always have Greenwood as a fallback position. And I really can’t see going to Greenwood until and unless I have given this my best shot.

So look around… Think about your friends and neighbors and coworkers. What about nieces and nephews and cousins and their friends. Put out the word and help me find someone to be my roommate.

Sometime soon I’m going to put up a webpage with perhaps a YouTube video designed for the general public to view and you can direct them to that page. By the way if anyone is interested and it makes a difference, I live in the Eagledale area just north of Speedway. It is a four bedroom house and the caregiver would get their own bedroom.For now this is just directed to people I know. I’m hoping you can help.

Eulogy for Kenneth C. Young 1934-2019

This is a transcript of the eulogy I gave for my dad. At the bottom of the page is a YouTube video that is audio only with a slideshow of photos of that same eulogy.

I want to thank everyone for coming out this morning to help honor my father Kenny Young. And it’s great to see such a big group of people here. We’ve passed out a little prayer card this morning that has “The Prayer of St. Francis” in the front of it. And at the end I’ll offer a prayer of thanksgiving and then I will invite you to pray “The Prayer of St. Francis” with me.

The reason I chose that particular prayer is because it starts out with the phrase “Lord make me an instrument of your peace”. And I think of… When I think of words that describe my father I think “peaceful” and “patient” are the first words that come to mind. No matter what life threw at him, he always took it in stride. He never got upset about anything. And he had a lot of challenges in his life.

His father was an alcoholic. He had to deal with my disability. Mom and dad had five premature babies that only lived a day or so. Plus multiple other miscarriages that my mother and dad had to endure. The fact that my uncle, his brother, is hearing impaired was a challenge to their family. And all of these things he took in stride. He would always roll with the punches. Nothing ever got him down. He was good in a crisis.

He just had this quiet calm that kind of provided a good balance to my mother who was kind of frenetic at times… A high-energy person. (chuckles) and so that’s why they made such a good couple. I don’t ever remember him yelling at us as kids. You know a lot of times people say “Wait till your father gets home!” We were glad when dad got home! (laughter) He was a calming force. You know… Yeah we wanted dad to get home. Get get mom off our back! (laughter) So that… that calm and peaceful kind of demeanor is the first thing that I think about my father.

Some examples… One day Carol when she was a teenager was driving down the road… Got the van caught in a snow drift and flipped it on its roof and totaled the van. And he was still… I mean he was upset. He was worried. He was glad she was okay. But he just stayed calm. You would think he would rant and rave and carry on… He didn’t do that.

Karen was telling me this story. One time she woke up one morning and went outside and her car had caught fire overnight. The entire interior of the car had been completely gutted and burnt itself out. We got no idea how it happened. He went out, looked at it, mumbled a couple of expletives, walked right back in the house calm and collected. No worries. No problem. So he was a very calm and quiet man.

He also had a great deal of patience. Let me see a show of hands… How many people did he teach to waterski?

(About a dozen people raised their hands. Judy Chapman said “or tried”. Laughter throughout)

Or tried to teach to waterski. There is one he tried and failed. (More laughter)

I mean… How patient did he have to be? He probably drug you behind that boat for hours and hours. And then when you finally got up he’d drag you around the lake until you wore out. You know that kind of patience is is such a virtue. And was really a gift of his.

Now he did have… He wasn’t an emotionless person. He did have feelings and emotions but he didn’t let them get out of control. He just stayed calm and collected. And I think like a lot of men, he was uncomfortable with some of the mushy things… You know mushy expressions of love. He would rarely say the words “I love you”.


But you know you hear people on TV and in movies and they say (in whiny voice) “Oh my father never told me he loved me.” and their life was ruined by it. Well… Dad was always THERE for us. We didn’t need to hear “I love you”. EVERYTHING he did was an act of love. So if he didn’t say the words out loud, we didn’t feel cheated by that. We never felt a loss by that.

And I think the prime example is the joke my mom used to tell. She would say “I’ll ask Kenny ‘Do you love me?’ and his response always was (grumpily) ‘I’m here ain’t I?'” (huge laughter).

So… I don’t know if that meant you know… If I couldn’t… If I didn’t love you I wouldn’t have put up with you all these years or… But I think it’s more his philosophy that the way that he showed love was by being there. He was always showing up. He understood that showing up was the biggest part of a relationship. Just his presence… Being there for you when you needed him was the way to show his love and his… his feelings for you.

And so that sort of brings me to the next words that I think about him and that is his loyalty. That he expressed his love by being loyal to… to friends and family. He was always there to help you if you had a home improvement project. Or you know if you needed a phone cable run or cable TV, he’d crawl through your attic or in your crawl space… run cables for you. He’d fix water heaters. He’d do plumbing. He could do just about anything. It wasn’t just the sheet metal that he was famous for. He could fix anything. So he was always there for friends and family to fix things.

He would also… Talk about him being there. He was always there when mom or I were in the hospital. Mom was very sick and in intensive care and in a coma for 19 days. And he was there by her side every single day. Every day he would go up there and just sit in the ICU and read a book just to be next to her.

Two years ago when I was in the hospital after I got my trach. He was coming every day. And he me wasn’t getting around to get in those days too. And the weather forecast one day was for an ice storm. And I said “Dad stay home. The roads are going to be terrible.” I told everybody on Facebook “Dad won’t be coming today with that weather forecast.” All of a sudden he shows up! I said “What are you doing here? I told you to stay home. The roads were terrible.” He said “Well it was pretty tough in Eagledale but when you when you got on the main…” I said “Yeah how the hell did you get out of Eagledale when the roads were solid ice?” He said “Well… I didn’t have anything better to do.” (laughter) So you know being there and being loyal, and always showing up was really his gift.

[A story I had intended to tell but left it out of my live presentation. He also cared about his friends and coworkers when they were sick. He would visit them. His coworker George Yeager was seriously ill with emphysema. He was on oxygen and couldn’t leave the house because he was so weak. Dad would visit him regularly. After he passed away, dad would check-in on his family from time to time.]

He was very loyal to his friends. He had lifelong friendships with people here today. The Byrams and the Brakes and the McGraws and these people are all people that have met in my life because they were in his life lifelong. For years our partners at the lake.

And he treated his friends like family. These people that I mentioned you’re like extra aunts and uncles to me and that’s because Dad treated you like brothers and sisters. And so you’re family. And so we’ve taken it out up in that me and my sisters… our friends are like family to us as well. We follow in his example.

One of the ways that dad expressed his, his loyalty and his commitment to his friends was through his hospitality. He enjoyed going to the lake but he enjoyed it even more when we could have company there and have friends there. And we would invite huge crowds of people especially on like Fourth of July weekends. And he would stand there and cook hamburger after hamburger after hamburger. I don’t know how many thousands of hamburgers he grilled in his time (laughter). And by the time he got done to sit down to eat, half of us had already finished. And he never complained once. He just was a very hospitable person.

That hospitality extended to having houseguests. When Carol’s friend Laura was having problems with her family and needed somewhere to go we had Laura move in with us for a while. And he was very hospitable to her and never complained.

My Grandma Osterman spent the last five years of her life living with us. And my mother struggled to take care of all of us. And it was, it was a strain on the family but he never complained. He was always very supportive. He understood how important it was for grandma to be here among our family. And he understood how important it was for my mom to be able to do that for her out of love. And so he supported that even though it was a great strain on our family. And, and we see those traditions carrying on today.

His loyalty also extended to his coworkers and especially to the union. He was a very proud union man. He enjoyed his work in sheet-metal and was so dedicated to the trade that he wanted to pass what he had learned on to other people. So he actually taught night school to train sheet metal workers in the night school apprentice program. He served on the credit union credit committee helping to approve the loans so that other sheet-metal workers could buy a car or, or pay their bills. He saw that as an important thing. And even though you probably think of my mother and I as being the political activists of the family, when the union would have a rally at the Statehouse he would show up for a rally when the union called. Whether it was a right to work or a prevailing wage law that was on the line he was always there for the union.

And so as we start talking about his work, I think the next topic that I think about my dad is I would describe my dad as a master craftsman. He loved his work. He always wanted to be a sheet-metal worker. My grandfather worked in sheet-metal. He was anxious in high school to take the metal shop. It was his favorite subject. Immediately after high school he went into the apprentice program, became a journeyman, and a master sheet-metal worker. And he worked at the trade until he retired.

He was very proud of his work. He made things out of metal for the fun of it. You know you’d think if you’d beat on sheet-metal all day long… you wanna to go home and not have… and not see another piece of metal again. But, but he liked doing stuff after hours. He would go into the shop on weekends and make little projects and big projects and things.

He could fix just about anything. He had… Funny thing… one day something was wrong with the chandelier over our dining room table. It was flickering or doing weird or something and mom asked him to look at it. So he went and reached up and just looked at it and all of a sudden it fixed itself. (laughter) Like just him looking at it was magic or something. He didn’t know what he did. He jiggled a wire or something. Mom says “What did you do?” He said “I looked into it.” (big laughter). That got to be a running joke. Anytime he tried to fix something, and it worked, and he didn’t know what he did to fix it, he would just say “I looked into it” and that got to be the running joke.

Before we talk about all of his sheet-metal work, let’s, let’s talk about other things that he did. He poured a lot of concrete in his day. We had a beautiful patio at the back of our house in the early years. Unfortunately it got covered up by the concrete of our room addition a few years later. He poured all of the concrete at the lake, the foundation for the cabin, that big long sidewalk that goes all the way down the hill, and the patio at the bottom. He did all of that.

He could do carpentry. He basically designed and built our cabin at the lake. He built the addition on the back of our house. He could do plumbing. He could do electrical.

The addition on the back of our house was one of his favorite stories. My mom wanted a dishwasher. Adding to the house was all about the dishwasher. We had this tiny kitchen. The refrigerator, stove, washer and dryer all in the kitchen… no room for a dishwasher. “I gotta have a dishwasher”. So well we’ll add something onto the house. So we tore up the old bathroom. Made it into a laundry room. Well you aren’t just going to add a bathroom… while you’re adding on you need a family room. And well you know with eight years difference between me and Carol and another eight between Carol and Karen. We ought to each have our own bedroom. So we’ll make a new master bedroom for mom and dad and then us kids each get a bedroom. Well mom likes to entertain, so we needed a big family room. In the end we doubled the footage… square footage of our house. Dad says “It’s the dam most expensive dishwasher ever bought!” (big laughter)

So like I said, he designed and built all of that. He built the cabin at the lake. The only thing that he hired out was had a bulldozer come in and dig out the basement. And someone put up the concrete block. But everything else him and his friends did and it was all his design and supervision.

He built every kind of gadget for me that I could ever design. Every kind of assistive technology you can think of. I had a floating motorized chair that I could swim around in at the lake, he built the lift for our van, for the van that we had. He built every kind of bracket and gadget and computer tables and he wired up a ton of micro switches that let me push buttons and operate things. In fact, the very last thing that he made for me was a pushbutton that I’m going to probably use as a nurse call button. He wired that up one month ago today on January 14th. So up to the very very end he was building gadgets for me. And whether I end up using that button or not, that’s going to be something I really cherish because it was the last wire he ever soldered.

Let’s talk about the things that he made out of metal. Like I said before he made the lift for the van. He built our first pontoon boat. He built the rowboat. The metal spiral staircases in the cabin. He built dock ladders. Two or three different ladders for our dock. One ladder for the Roells. He was mad at my uncle John. He built them a dock ladder and the next year they sold the property and the ladder went with it. (laughter) He said “if I knew they were going to sell the damn thing I wouldn’t have given them is a ladder. (laughter) Sorry about that guys… That’s what he said. (Cousin Kathy spoke up “I didn’t want him to sell it either.”) Yeah.

I want to talk about the things that he did for work. I put together that poster that’s at the back of the room that many of you’ve seen. If you haven’t had to look at it, I encourage you to do so on your way out this afternoon. The different things that he did when he worked in the various sheet-metal shops touched the lives of countless number of people.

In the early years it was ordinary ductwork for heating and air conditioning. There’s probably miles of ductwork hanging in buildings in this city that my dad fabricated and installed. He did a lot of work in commercial kitchens. In hospitals and schools and restaurants that have ventilation systems and stainless steel countertops that he installed. You may have eaten a meal that was prepared on one of his countertops. Just think maybe thousands of people have eaten those meals.

He worked on metal sculptures. There is a jewelry store downtown that has a large metal sculpture that looks like a diamond but it’s made out of stainless steel and it’s hanging in front of the jewelry store. People walk by it every day.

There is a hospital that has a huge metal sculpture that looks like leaves there’s a photo of it on the poster. Then he helped fabricate and install. One of his bosses designed metal sculptures.

Many years ago when they renovated Saints Peter and Paul Cathedral downtown he refinished the brass doors on the front of the building. They were all tarnished and corroded. He had to take them down. And he said he couldn’t get the screws out. He had to drill out the screws and the rivets. And he cleaned… He took them back to the shop, refinished them. Sent them off to be coated in some special coating so that they would stay untarnished in the future. Then he reassembled everything and put them back up. Every week hundreds of people walk through the doors that were refurbished by my dad.


[Another story I had intended to tell but forgot… Years ago when they refurbished our Soldiers and Sailors Monument on Monument Circle downtown his shop replaced the window frames and the roof on top of the monument. There are photos on the poster showing the work they did. You can see the metal loops where they hang the Christmas lights each year. My dad was personally responsible for installing metal loops that hold Christmas lights that are seen by thousands of people every year as a visit downtown Indianapolis during the holidays.]

At Eli Lilly company on the south side they had these huge machines that are as big as our house, he said, that make capsules for the medicine. And there are all sorts of heaters and vents and stainless steel shoots and different things that these capsules go through. How many millions of doses of medicine have slid down a stainless steel shoot that my dad built? And how many lives have been saved by those medicines? It’s got to be thousands… Maybe even millions!

In later years one of the clients at his shop was a man named Gus Fleming and Gus was a brilliant engineer. Kind of absent-minded professor kind of guy. Kind of scruffy looking but still brilliant. He invented a machine that tests the turbine blades on jet engines. It would blow air over the blades and tell you if they were worn out or not. And when dad worked in the shop he helped fabricate those machines and then after he retired he went back to work part-time for Fleming to help them out by installing equipment and making the fittings that hold the turbines in place. They must’ve made dozens, perhaps hundreds of these machines and shipped them all over the world wherever they refurbish jet engines. Hundreds and hundreds of jet airplanes… maybe thousands have been tested on the machines that my dad built and literally millions of passengers have flown on airplanes whose jet engines were made safe by a machine that my dad helped to build.

Imagine the legacy that he has left! Literally millions of people have benefited by his skills… by the things that he did… the things that he built. That is an amazing legacy!

I want to talk in particular about a couple of projects that he did as a volunteer and that was something that he did for St. Gabriel’s. Fr. Paul who is here with us today, said “We need a new baptismal fountain at St. Gabriel’s”. And he got a parishioner to draw up a sketch of what it should look like. We showed it to my dad and he said “Yeah I can build that.” So he built… Actually he built two of them. He built one out of aluminum or stainless, some cheap material because he wanted to make sure that it works first. And once he was sure the design would work and the water would flow the way it was supposed to… then they went and bought a piece of very expensive polished brass. And he built a very beautiful fountain. And are some photographs of it on the poster in the back of the room. And we used that fountain to baptize hundreds of children for many years. We have a new fountain when we renovated the church but we used that fountain for many years.

He also built a very beautiful Advent wreath that we used, out of metal, and we used it for many years. And he did these things not necessarily because my mom or I asked him to. He did it because he loved making things out of metal. And he saw a need. And he wanted to help out.

You know… He wasn’t Catholic. He wasn’t religious. To the best of my knowledge he didn’t pray. Or he never talked about it. He was very curious about religion. He watched a lot of documentaries on History Channel and Learning Channel about religion. And we would talk about religion a lot. There were people that he worked with who were very, very strict fundamentalists. The people who think that God created the world in EXACTLY 6 days. And took everything very literally. And he was amazed that they could have such strong faith that they would take this literally to some kind of silly extremes. My apologies if there’s anybody who’s fundamentalist that way. But he really admired that they can have that faith that would make them believe just because the Bible said so. I think he… he might’ve wished that he had that faith but he just couldn’t find it anywhere.

So… What do we say about his soul? A man who had no religion. Who didn’t go to church. He was baptized but he didn’t practice any faith. What can we say about him?

Well there was a period of my life where I was away from the church as well. I wasn’t exactly atheist but I guess you would call me a devout agnostic. (laughter). Okay… Where I just, I just wasn’t sure I believed any of that stuff and it wasn’t important to me. And I didn’t want anything to do with it. And kind of like my dad I actually did some volunteer work for St. Gabriel even when I wasn’t a believer. I helped them with some computer things in those early days. But when I did come back to the church, I came across a scripture passage that really spoke to me. And I think it, it tells us something about my dad. So I’d like to share it with you.

A reading from the Gospel according to Matthew.

“When the Son of Man comes in his glory, and all the angels with him, he will sit upon his glorious throne, and all the nations will be assembled before him. And he will separate them one from another, as a shepherd separates the sheep from the goats. He will place the sheep on his right and the goats on his left.

Then the king will say to those on his right, ‘Come, you who are blessed by my Father. Inherit the kingdom prepared for you from the foundation of the world. For I was hungry and you gave me food, I was thirsty and you gave me drink, a stranger and you welcomed me, naked and you clothed me, ill and you cared for me, in prison and you visited me.

’Then the righteous will answer him and say, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? When did we see you a stranger and welcome you, or naked and clothe you? When did we see you ill or in prison, and visit you?’

And the king will say to them in reply, ‘Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me. Then he will say to those on his left, ‘Depart from me, you accursed, into the eternal fire prepared for the devil and his angels.

For I was hungry and you gave me no food, I was thirsty and you gave me no drink, a stranger and you gave me no welcome, naked and you gave me no clothing, ill and in prison, and you did not care for me.’

Then they will answer and say, ‘Lord, when did we see you hungry or thirsty or a stranger or naked or ill or in prison, and not minister to your needs?’ He will answer them, ‘Amen, I say to you, what you did not do for one of these least ones, you did not do for me.’ And these will go off to eternal punishment, but the righteous to eternal life.”

This is the word of the Lord.

We will be judged by our actions. This is how this Scripture tells us we will be judged. It’s not that we earn our way into heaven through our actions but our actions illustrate the kind of person that we are on the inside. In Matthew 7 it says “By their fruits you shall know them.” And so by my dad’s fruits we shall know him as well.

And the interesting thing about this passage is, all of these righteous people who were doing good things… Didn’t realize they were doin’ it for God! Lord when did we do these things for you? I didn’t know I was doing it for you? I was just helping people. I didn’t know I had a life of ministry. I didn’t know I was serving Your Will.

And neither did my dad. He didn’t realize that all of the good things that he had done his whole life long… all of the things that he had accomplished that touched MILLIONS of people… was God’s work!

But God knew. And God will say to him “You are among the righteous. And to you goes eternal life.”

So today I have no doubt about my dad’s soul. Because he checks all of the boxes in Matthew chapter 25. He put food on our table. He put clothes on our back. He took care of us when we were sick. He visited us and his friends when they were sick. He helped his friends. He welcomed the strangers into his home and took care of their needs. He helped millions of people who he never met and he checks all the boxes and he is certainly in paradise.

Now it says… that… You know the church has certain people who we declares to be “Saints” but technically anyone who is in heaven is a saint. And I have no doubt that the word “saint” applies to my dad. Despite all of his life’s challenges he was a peaceful, patient, loving, loyal, hard-working person who shared his God-given gifts with the world.

Our family today attempts to follow in his footsteps. We try to do the same things that he did. We try to be as loving and as caring and to be there for our friends and to be there for one another. We try to have the same hospitality. We try to treat our friends as family. So his life challenges all of us to follow these virtues and to behave the same way. To look at ourselves and say “How can we be of service to one another? How can we the friend, and the neighbor, and the hard-working person? How can we use our God-given gifts and talents the way my father did to help the world a better place because we were here?” That’s the challenge. That’s the legacy that my father leaves us and we should strive to follow in his footsteps. A great legacy. A powerful legacy.

And if we do… If we can check all the boxes in Matthew chapter 25 the way that my dad did, we will share in eternal life as well.

I’d like to now offer a prayer of thanksgiving for the life of my father. And at the end I will invite you to join me in “The Prayer of St. Francis” in your pamphlet. And pray that we can emulate some of the virtues that my father had.

Heavenly Father we thank you and we praise you for the life of my father Kenny Young. We thank you for making him such a calm and peaceful presence in our life. A steadfast friend. A loyal friend who was always there… always ready to help… always to just sit by our side or to fix things or to make things. We thank you that we had the opportunity to know him, to love him, to feel his love, to feel his presence, and to grow and to learn by his example.

Open our hearts that we might emulate his virtues. That we might look within ourselves at what God-given gifts and talents that you’ve given us that we might share it with the world. And help us always to be aware that no matter whether we realize it or not, all of the good is that we do for one another, we in fact do for you.

He was such a peaceful person. So let’s pray together “The Prayer of St. Francis”.

[Note: the printed version of the pamphlet they left out the third line so we recited it as printed but below is the proper form. Also I reversed “understood as to understand” when I recited it. Psychoanalyze that one will you. 🙂 Everyone else got it right.]

 

Lord, make me an instrument of Thy peace:
where there is hatred, let me sow love;
[where there is injury, pardon;]
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy.

O divine Master, grant that I may not so much seek
to be consoled as to console,
to be understood as to understand,
to be loved as to love.
For it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to eternal life.

Amen.

We ask all of this in the name of the Father, and of the Son, and of the Holy Spirit. Amen.

I want to thank all of you for being here on behalf of my sisters Carol and Karen, my uncle Keith, all the grandkids and great grandkids. You are all his great friends and colleagues and family. And if anyone should ask you “Did you love Kenny Young?” You can say “I’m here ain’t I?” (big laughter)

So thank you all for coming. I also want to thank the mortuary staff for being so gracious and hospitable to us. And they’ve been a real blessing during this time. We are going to have a little gathering back at my house. We are going to wait and see how many people show up and maybe order some pizza and we got some drinks. So anyone who would like to come and visit for a while would be welcome to come.

So now I will turn it over to our director here and he will invite you to pay your last respects to my father.

[Funeral director:] Kenneth Young in honor of the love and memories and the legacy that you leave behind we offer you a final blessing. May the road rise up to meet you. May the sun shine upon your face. May the rain fall soft upon your fields. And until we meet again, May God hold you in the palm of his hand.

[Me:] I should mention that we will not be going to the cemetery. There is no graveside service. So this concludes our program for today.

 

[Here is a YouTube version of the eulogy]

Here is a link to his obituary on the Stevens Mortuary website. It includes a video that the mortuary put together from images we provided.
https://stevensmortuary.net/tribute/details/1286/Kenneth-Young/obituary.html

Insensitivity Is Not Equal to Racism

There are certain principles for which “zero-tolerance” is entirely appropriate. Murder, rape, any serious crime for that matter. But no one is perfect. And no amount of punishment is going to make anyone perfect. Just think about the phrase “zero-tolerance”. Is that really a policy we want to adopt in ALL situations? Is zero-tolerance compatible with our American ideals? Is it compatible with our religious ideals?

There is another principal in Western civilization that says “The punishment should fit the crime”. Yet in this era of zero-tolerance and political correctness run amuck, too often the careers and reputations of offenders are being destroyed even if they are simply someone who showed bad judgment or behaved in an insensitive, immature or inappropriate way. Such extreme sanctions should remain reserved for the most blatant and severe criminal behavior.

I’ve already spoken in a recent entertainment blog about the case of comedian and talkshow host Chris Hardwick who was temporarily suspended because of allegations of abuse and blacklisting made by his ex-girlfriend. While I’m fully supportive of #MeToo and make no excuses for bad behavior, there is a significant difference between someone like Harvey Weinstein or Bill Cosby as compared to some guy who had a bad breakup with an ex-girlfriend. Men (and women) need to be held accountable for their bad behavior but the consequences of that bad behavior need not always be the total destruction of a person’s career or even their reputation.

Two cases have recently been prominent in the media… one national and one more local. Locally we have the case of sports broadcaster Bob Lamey who recently retired as the play-by-play announcer for the Indianapolis Colts radio broadcasts. He has received numerous accolades for three decades of quality work as a broadcaster and announcer not only for the Indianapolis Colts but for the Indianapolis Motor Speedway and other activities. He is much beloved and respected by fans, fellow journalists, and athletes.

A couple of days after his announced retirement, the story broke that there was more than meets the eye behind the story. Lamey had used the N-word and an African-American woman who heard the conversation was seriously offended. She reported it to human resources who in turn reported it to the Indianapolis Colts who are his employer. The story of his retirement made no mention of the incident so the woman involved told her version of events to the media.

While his use of a racial epitaph was inappropriate and insensitive, he was not using the word himself. He was recounting a story in which someone else had used the word and he quoted them verbatim. While he could have substituted the phrase “N-word” when telling the story, he didn’t. He should have. It was insensitive. It was inappropriate. One can argue it is indefensible.

But it doesn’t make him a racist.

I have no problem with a zero-tolerance policy towards racism. Racism needs to be called out, confronted, condemned, and the consequences of those who are shown to be racist should be severe.

I also don’t deny the power of the word and all that its history implies. In this recent editorial in the Indianapolis Star columnist Suzette Hackney says “Dear white people, stop using the N-word”. She makes her case much more eloquently than I could especially since I’m an old white guy. I would have to agree with pretty much everything she says.

She points out that the use of the word by African-Americans themselves is not license for others to use it. I can agree with that. She admits it’s a double standard.

The point with which I cannot agree in this debate is that the use of a particular word without taking into consideration the context in which it was used should not be grounds for total condemnation of the person using the word or the total destruction of their career and/or reputation.

The complainant in the Lamey case went on TV and expressed her outrage at the accolades being served upon him. In her opinion, the single use of this word not directed toward someone but by merely quoting someone else’s use was sufficient to make him unworthy of any form of praise. She was appalled by those who say that Lamey deserved to be enshrined in the Colts “Ring of Honor” at Lucas Oil Stadium.

To me this is totally ridiculous. There has been zero evidence that Lamey is anything beyond a person who made and insensitive remark. There have been no accusations of racism in any way shape or form.

The Colts organization have finally acknowledged that they accepted his resignation because of the incident. It’s unfortunate that they could not have been more open about the reason for his retirement but I can understand that they would want to allow him the dignity of a quiet retirement so that he might avoid the kind of unjustified over-the-top condemnation he has now received. Even complainant acknowledges that at the time of the incident, upon realizing that he had made a mistake, he profusely apologized. In another embarrassing incident a few years ago when he slipped up and dropped an F bomb during a Colts broadcast he was also greatly embarrassed by the mistake and sincerely apologized.

How did we become a society that is so easily offended by the mere utterance of a single word? What happened to the old adage “Sticks and stones will break my bones but names can never hurt me?” How did we lose our ability to forgive?

The other similar story that has been dominating the national news is the story of “Papa” John Schnatter the founder of Papa John’s Pizza who admitted to using the N-word on a public relations call. Schnatter has resigned as chairman of the company he founded as well as from various other boards and organizations. He has been a renowned philanthropist who has donated money to several universities and other organizations which have seen fit to remove his name from buildings that were named in his honor as a result of his philanthropy. When Ball State University decided not to remove his name from a building and issued a statement saying that they could forgive his insensitive misstep, the outcry which arose forced them to reverse their previous decision to be compassionate and forgiving.

While I do not know the full details or context in which he used the N-word, from everything I’ve read it was a situation similar to Lamey in which he was not making use of the word himself but quoting someone else. Again it was inappropriate, insensitive, and worse than Lamey it was in a more public setting. Again there have been no accusations of racism… merely obvious insensitivity and inappropriate use of the word. Like the columnist said… Dear white people, don’t use the N-word. But does this offense warrant the total destruction of his career and the erasure of his philanthropic work? Chris Hardwick had his name removed from the website nerdist.com as its founder as if he had never existed let alone created the organization. The erasure of someone from history is a tactic straight out of the totalitarianism in the novel “1984”. We are erasing from history the good works of people over singular missteps.

Don’t get me wrong… I don’t think every rich guy who put his name on buildings has free license to espouse racist views. If for some reason that was too subtle for you I’m talking about Donald Trump.

When we impose such extreme sanctions on the relatively minor offense of an insensitive comment as we do on those who are blatantly and undeniably racist then we diminish the severity of those who truly are racist. If there is only one level of offense and one level of punishment it unjustly punishes those with minor offenses and it unjustly lessens the impact of those who commit major offenses.

The word “prejudice” means to prejudge a situation. It means to call judgment upon someone without taking any consideration all of the circumstances. It ignores context. In our battle against true prejudice we are prejudging anyone who commits any offense whatsoever. Zero-tolerance as a policy can only be justified in the most extreme cases. Zero-tolerance was the justification for separating immigrant children from their parents over misdemeanor charges. Zero-tolerance does not allow for degrees of offense. It does not allow for the punishment to fit the crime. It does not allow for compassion nor forgiveness. It doesn’t allow for one’s intent to be considered beyond the actual offense.

The only way that we can survive as a society is to find it in our hearts to find tolerance where it is justified. To find compassion for all. And to forgive others especially when they have credibly expressed repentance for their mistakes. If we cannot do this, our civilization will cease to be civil and thus cease to be at all.

Training Day — Holiday Hospital Part 9

This is the ninth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. It’s been several months since I added to this series because I’ve been busy doing other things. However it’s time to make a big push and finally finish the story. There are other major events happening in my life right now so I need to put this behind me and move onto the next chapter. Here is an index to all of the entries in this series.

Training Day

We are now down to December 27, 2016 and this was a banner day that we had been waiting on for a couple of weeks. The respiratory therapist from Home Health Depot was coming to visit to show me all of the equipment we had been waiting weeks to get. He needed to train Dad and Carol on how to use it. Also present were 2 nurses from St. Vincent were going to be visiting me from time to time once I got home. I’m not really sure why they needed to be there since theoretically they should have known how to operate all of this anyway. 12/27/2016 7:30 AM

The therapist was a really nice guy named Josh who not only delivered the equipment and trained us, he continued to be our representative for many months. In the first week home he made several visits which eventually tapered off to a monthly visit where he would download data from the ventilator, perform preventive maintenance, and bring us additional supplies.

Josh later went on to do respiratory work in a hospital and was replaced by another guy. We continued to have good people serve this role of the monthly visit to check the machine and to bring us supplies. At one point Home Health Depot sold its business to a company called Lincare which is a terrible company to work with. We ended up switching to a different company called Aerotech and we get good service from them to this day.

The demonstration and training started off with a ventilator called a Trilogy which from what I’ve learned is one of the most popular small portable ventilators available. I had already done some research about it on the Internet. It’s pretty versatile in that it can be used as a ventilator, CPAP, or BiPAP. It has a backup battery that will last several hours in case of a power failure. It comes a rollaround stand. Just below the ventilator is a humidifier device. It is a small heater that heats up a clear plastic chamber with a metal plate in the bottom of it. You fill the chamber with distilled water and a hose coming out of the ventilator blows through the chamber picking up heat and humidity before going through a hose that connects to your trach.

The ventilator that I had been using in the hospital had 2 hoses coming front it. One was to push the air in and the other let me exhale. They connected to a small Y connector right before they connected to the trach. This ventilator only had one hose. To allow you to exhale, it had a small connector that they call a “whisper swivel”. It is a swivel connector so that the hose doesn’t get twisted but it also has a small gap in it that allows air to escape. If you didn’t have some way to vent your exhaled carbon dioxide you would just keep re-breathing that same gas and would get carbon dioxide poisoning. It’s similar to the tiny hole in my CPAP mask which allows me to exhale. I later learned why it’s called “whisper”. A few months ago we tried out a different type and it made a lot of noise. We stuck with the quiet version.

Jumping ahead in the story a bit… This relatively minor different between the ventilator that I had been using and the one I was going to continue to be using was a bit disturbing the first night. Exhaling felt significantly different. I really wish they had brought the equipment in sooner so that I could get accustomed to it before I left the hospital. As it turned out, the difference wasn’t really that much once I got accustomed to it. But it was a little bit scary the first night when I noticed how it felt different. I wasn’t immediately sure how I would adjust.

The next piece of equipment was a suction machine. This was one of the things that had concerned me the most. Not only was it going to be handy when I needed to spit in the Yankauer, it was also going to be necessary to suction the trach with a catheter. I was concerned about how portable this machine might be. As it turns out it was going to be fine. It fits nicely in a padded cloth case are little larger than a sixpack cooler. It has battery power as well as plug-in. Although it was a little bit larger than I wished it was, I was sure it would work and keep me mobile to go places like visiting family or going to the movies. I have seen other models that were smaller and more portable than this one but I’ve not taken the time to pursue them. This one is working out okay nearly 2 years later.

I was also going to get a small air compressor pump that would provide enough air for a nebulizer treatment. I have been getting these treatments every six hours around the clock. I knew I wasn’t going to do the treatments that often but I wasn’t sure how much I was going to need them. As it turns out I really only need them on as needed basis. I’ve probably only done 8 or 10 of them in the past 20 months.

The one missing piece of equipment was a high flow air compressor that would provide humidity to the trach when I wasn’t on the ventilator. This compressor would use the same humidifier as the ventilator. As I mentioned before, all of the time that I was in bed they insisted I stay on humidified oxygen that would blow into a cup that fits over my trach and talking valve. When I was sitting up in the wheelchair in the hospital I would get off of the humidifier and some days that was okay. However other days I could feel myself drying out thus creating some congestion. In some respects being connected to a humidity source was a kind of dual edged sword. If I became dependent upon it, it would not only restrict my movement away from home but it would also tie me down to one location in my house. On the other hand if it was something I really needed, it was the one thing that wasn’t being addressed despite all of my questions. The respiratory guy from Home Health Depot assured me that he could get me the compressor. All they needed was orders from the doctor that was going to be easy to get.

I’m going to jump ahead and tell the rest of the compressor story out of sequence. While all of the other equipment was reasonably sized and portable, this compressor is a monster that weighed a ton. It was about 2 feet long, a foot tall by about 8 inches deep. It was also very loud compared to the other equipment. For the first couple of weeks, my daily routine was I would get off of the ventilator very early in the morning when Dad would get up about 7 AM. I would then go on the compressor/humidifier until I would get up and dressed and about 10 AM. On rare occasions I may have put it on when I went to bed at about 9 PM and use it until 11 PM when I got on the vent. But eventually I found that it wasn’t necessary at all. It turned out that getting rid of the device was as hard as getting it in the first place. We had a choice of either getting the doctor to rescind his orders or to sign a document saying we were no longer using it against medical advice. Because it was going take a special trip to the doctor just to get those orders changed, at one point I finally just told them to take it and we would sign the AMA form. e made this move when we transitioned from Lincare to Areotech.

I did try one other humidity device. There is a small fitting that you can put on your trach called an HME or Heat and Moisture Exchange device. It sometimes is referred to as an artificial nose because your nose warms and humidifies the air you breathe in. I previously discussed this in an earlier installment. We did end up trying them out and I used them occasionally but not very often and not recently. I still have a huge box of them.

Overall the training went very well and I was satisfied that I was going to get the equipment I needed. Here was my Facebook post from that afternoon which expresses my great relief that we were getting closer to sending me home. 12/27/2016 4:03 PM

I stayed in bed that day and got caught up on some other things. Among them I finished editing and posting a blog entry that was top 10 stories of my life for 2016. Here’s a link to that entry.

Top 10 News Stories in My Life for 2016

The other fun thing that happened that day was that I reconnected with Brady Hansen. He was the medical student who had helped care for me when I was in the ICU. I forget the details of how he tracked me down. I believe I had left notes in the ICU for the staff with links to my blog and/or Facebook page. Anyway I got email from him and he had begun reading my blogs about the days in the ICU. He said it was great insights for someone who was about to be a doctor. I encouraged him to share with anyone he wanted. We connected on Facebook and I’ve exchanged a message or two with him from time to time since then. At one point he shared that he was very pleased that he had gotten a residency at a military hospital in California. He had previously been in the military and although it meant moving his family, they were still very excited about it.

The other thing I did that evening was I did some research about the speaking valve that I use. It’s called a Passy-Muir device named after the 2 people who invented it. David Muir was not a designer or engineer or medical professional. He was just a guy with muscular dystrophy who ended up on a ventilator like me and was frustrated that he could not talk. Here is a link to a Facebook post that I made that day about him. It contains a link to a biography page about him. I’m sorry to report he passed away years ago but thanks to his ingenuity I and people like me have a voice. I am greatly indebted to him. 12/27/2016 5:59 PM Biography of David Muir.
http://www.passy-muir.com/david

Being Tested

The final item that we needed to check off before I would be allowed to go home was that Dad had to spend the night with me to prove that he was capable of taking care of me. They brought in a folding bed with wire springs and a rather thin foam mattress completely encased in slick black plastic. They covered it with a sheet that didn’t really fit very well. When you try to sit on it, the sheets would slide around on the slick plastic. The plastic covered mattress on the metal springs made a horrible squeaky noises every time you moved. Later the next day we suggested they ship it to Guantánamo Bay however even Dick Cheney might think it was too harsh of a torture for use on terrorists.

Dad and I were both pretty miffed that he even had to do this. Dad came up with the idea that he was going to make the most of it. If patients in the hospital were entitled to three meals a day and I wasn’t taking advantage of that because of my G-tube, he tried to talk them into bringing him a breakfast tray in the morning as if he were a patient. I tried to tell him he wasn’t going to get very far with that request but he made it anyway. As I expected they were not too keen on the idea and instead told him what hours the cafeteria opened in the morning.

The respiratory therapists from the hospital were in and out that afternoon and evening. They couldn’t help themselves but to play around with the controls and menus on the ventilator even though they’ve never seen one like that before.

In the hospital I had a nurse call button but I’ve spoken about extensively in previous blogs. But during the night, if Dad was going to take care of me, I didn’t want to call the nurse. I needed to call Dad. So we had to bring my call buttons from home. It’s a little Arduino based gadget connected to an X-Bee radio system. It sends a wireless signal from a box in my bedroom to a box in Dad’s bedroom. His box has a loud buzzer on it. So even though we were in the same room, because I can’t talk with the vent on, we needed both boxes so that I could buzz him.

I was concerned that because the buzzer is very loud that it would disturb the other patients or cause the nurses to come running. I wanted to close the door on my room but they said it was against policy to have patients room door closed. We had to leave it open a crack.

Dad had no trouble getting me on the ventilator so we settled down for the night. Every time Dad made the slightest movement his terrible bed made all sorts of squeaky noises. Dad is always a restless sleeper. He tells me that at home he wakes up in the middle of the night with the sheets or covers balled up. With the sheets sliding around on the slippery plastic, it was a wonder he was going to have any sheets at all.

When I’m in bed, they insisted I be connected to an oximetry and heart rate detector. If my oxygen level or heart rate drops below certain levels it rings an alarm. Whatever the default setting is for the heart rate, my sleeping heart rate often goes below that. We’ve been adjusting the level so that it doesn’t trigger so easily. But every time I take the device off and put it back on when I get up in the wheelchair, it resets the defaults. So in the middle of the night, my heart rate went low and the alarm beeped. Dad thought it was me pressing the call button. So he got up trying to ask what I wanted. I had to use my message board with him pointing at various things to try to figure out why I called him. I didn’t have an item on the board saying “I didn’t call you”.

We eventually resorted to taking me off of the ventilator temporarily and putting my speaking valve back in. Then I was able to explain to him what had happened. I don’t recall if we got the nurse or the respiratory therapist to reset the trigger level on the heart rate monitor or not. In the process of taking the off of the ventilator, the ventilator alarm started ringing and we had difficulty figuring out how to reset it. That drew the attention of the respiratory therapist.

It was a wonderful woman about 50 something years old who was my favorite of all the respiratory therapists. I’m embarrassed to say that I don’t for certain remember her name especially because I had grown so fond of her. I guess I didn’t put her name in my notes because I thought that I would never forget her. As I said she was my favorite of the entire two weeks and as you will see played a vital role in getting me out of the place. I’m going to call her Shirley because I know that wasn’t her name and I don’t want her to get in any trouble over the rest of this story.

I don’t recall the exact sequence of events that followed. Shirley was in and out a couple of times. We had explained to her how we got the alarms mixed up. She helped us get everything reset on the ventilator the way it should be.

Somewhere along the way of this entire process of getting me off and on the vent, Dad made a mistake. He made a mistake that we had discussed extensively over a period of days before we ever got to this overnight test. It was the only mistake that you could make with the ventilator that was potentially dangerous so we had discussed it thoroughly. But in the middle of the night when we are both half-asleep or had been sleepless all night as he had been, it’s easy to make mistakes.

The trach has a balloon-like device called a cuff that you have to inflate with air using a small syringe. It cuts off your upper airway above the point of the trach so that when the ventilator blows air into the trach, it doesn’t blowback out through your mouth and nose. The danger is, if you put the talking valve back on the trach without first deflating the balloon, you can’t breathe. In this case Dad was getting ready to put me back on the vent and he inflated the balloon before removing the valve which has the same bad effect. If left there too long it could kill me. As I said, we had discussed the situation thoroughly. We knew we couldn’t guarantee that we would never make that mistake. But we both convinced ourselves that if it happened, he would see that I was in distress and immediately remove the valve allowing me to breathe.

We really didn’t think we would end up making this mistake on the first night. But when it happened, our contingency plan where he would notice my distress and do something about it would have worked perfectly. In fact he was just about to reach to remove the valve so that I could breathe. But there was a problem… Shirley was there. She witnessed it all. And she quickly grabbed the valve before Dad could.

It was as much my fault as it was Dad’s. Shirley was on her way out the door and I thought something else I wanted to state her. I don’t remember what it was. So I had not noticed that dad was inflating the balloon until it was too late and once it was inflated I could not talk to stop him. If we had been alone, I would not have been distracted and would have reminded him to remove the valve before inflating the balloon.

We were there that night to prove that Dad could handle taking care of me by himself. But when the alarms went off on the vent we had difficulty resetting them. And in the process of trying to get me off of the vent, we made a very serious (potentially fatal) mistake. I knew I was okay the entire time. But what scared the crap out of me was that we had failed the test. I was worried they would not let me go home.

Somehow I managed to get to sleep despite my worries. My estimate is that night I may have gotten five hours sleep. Dad thinks he was lucky if he got three. It was sometime around 5 or 6 AM that I told him to get me off the vent. I knew he had had a terrible night and suggested that he go down to the family lounge down the hall and tried to get some rest in a recliner chair or sofa there. He said that the furniture in that room was no good and he wouldn’t be able to get any rest. We would just have to tough it out the rest of the day.

Then we discussed what we needed to do about Shirley. I told Dad that we needed to explain to her that even though we made some mistakes, we had planned for these mistakes and that we w down 20 ould have been okay without her help. He agreed that we needed to say something to her. Her shift change was at 6 AM so Dad stuck his head out the door and kept his eyes open for her. He flagged her down and we invited her in to talk.

I said approximately the following… “We need to talk about what happened last night. The whole purpose of Dad being here was to prove that he could take care of me on our own. But we had some problems last night that you helped us to resolve. I want to describe to you from our perspective what we think happened last night. When the alarms went off on the ventilator, we had a little difficulty figuring out how to turn them off. The one on the vent is easy. But the one on the humidifier heater is different. Even if you fix the problem, it still keeps beeping until you hit the reset. We’ve got all of the paperwork and instructions here and we would’ve figured out how to reset it eventually. So while we appreciate you helping us out, we are confident we could have handled that part on our own.”

Then I continued with the bigger issue… I said “The other thing that happened last night was that Dad inflated my balloon without removing the valve first. We had talked about this possibility extensively prior to this. We had both convinced ourselves that if we made such a mistake that we would recognize it quickly and we knew exactly what to do to fix it. It just so happened that you were here and fixed it first.” I also explained how I had gotten distracted and did not warn him what was going wrong. I explained if we had been on our own, I would have been more focused and it would have never happened in the first place.

I concluded by saying “From our perspective, that is what happened. We could’ve gotten through all of that on our own. From a different perspective we recognize that it seemed like we didn’t know how to operate the machine and that at one point Kenny nearly killed Chris.” I kind of snickered at that point and she responded by letting out a big laugh.

I went on to say that I realized she was a professional with a responsibility to do what she thought was right. I was not going to ask her to keep this information quiet. “You’ve got to do what you feel is right under these circumstances. This was a test to see if we could handle this on our own. From our perspective we are capable of doing that despite what you saw last night. I just wanted to share with you our perspective on the events and we trust you will do what you think is in our best interest.”

She was totally cool about the whole thing. The first thing she said was that she and every respiratory therapist she had ever known had made that exact same mistake but had only done it once. She said when that happens and you realize it and you fix it, it scares you so bad you know you will never make it again. So you guys have already had your scare. She went on to say she understood what we were saying and that she had every confidence that we would be okay on our own.

If I could have, I would have jumped up out of bed and kissed her full on the lips. 🙂

Hell, I already had kind of a crush on the woman before all of this. That night she saved my life… not by pulling the valve so I could breathe. She saved it by believing in me and Dad and letting us move forward with leaving the hospital and getting on with the rest of our lives. I can’t begin to describe how much she meant to me. She was so genuine in her explanation that I’m not really sure I needed to make the speech I made. Whether or not my words convinced her is irrelevant. In the end, she said nothing and we were able to go home the next day.

Over the past 20 months since then I think we may have done it twice more. In both instances it took less than 5 seconds to realize mistake and fix it. We were right in speculating that we would make the mistake from time to time and we were right that if it happened we could fix it without putting me in any serious jeopardy.

Having passed the necessary test and survived the night. They agreed that I could go home that day. But getting out of a place like that is never easy. Scofield and Burrows on the TV show “Prison Break” have gotten out of prison easier than I did getting out of the hospital. Details in the next installment.

Q & A about Spinal Muscular Atrophy – Celebrating SMA Awareness Month

Note: this blog was originally written in August 2018 but was updated in 2019 with more current information and corrected some errors.

This month has been designated by someone as “SMA Awareness Month”. As someone who has had Spinal Muscular Atrophy or SMA his entire life I don’t think I could be more aware 🙂 I always wonder about people who have breast cancer or who have family members who have had breast cancer if they ask the same question whenever they say it is “Breast Cancer Awareness Month”?

Really?

Is there anybody out there who has never heard of breast cancer?

But seriously folks… Back to the topic at hand. SMA is considerably more obscure. Even if you’ve known me many years you may not know why I’ve been in a wheelchair my whole life. What put me here? What is SMA?

So in the spirit of SMA Awareness Month” I thought I would spread a little knowledge and invite questions.

What is Spinal Muscular Atrophy – SMA?

SMA is a genetic disease. Both my mom and dad were carriers and did not know it. Estimates are that approximately one in 40 to 50 people are carriers. Even if both parents are carriers there is only a one in four chance that each child would have the disease. Of course that’s just a percentage over the long haul. You can flip a coin 10 times, have it always come up heads and the next one is still 50/50.

There are a variety of types of SMA. Type 1 is extremely severe and without intervention those kids are lucky to see their second birthday. With respiratory support, G-tube feeding etc. they can live several years. There is a new treatment that can prolong that. More on that later.

I have Type 2 which is not as severe but it generally means that I never walked (which I did not). Type 3 people can generally walk until their early teens sometimes later. There is a type 4 which actually is a significantly different disease but is still called SMA and I don’t know much about it. Even within the types there is a great variation. On various Facebook groups related to SMA I hear people describe themselves as “a strong Type 2” or “a weak Type 2”. I have a Facebook friend who lives in Canada and we are both Type 2 but her current physical ability at age 50 is about where I was at 21 or 22.

The disease is an overall weakening of your muscles. It does not involve any loss of sensation or paralysis. The muscles just gradually get weaker a.k.a. “atrophy”. It is actually a neurological disease however not necessarily a muscular one although it is often lumped into the general category “muscular dystrophy”. There are nerves in your spine called motor neurons. They are responsible for making your muscles move. They have nothing to do with your sense of touch or sensation. The motor neurons quit working and eventually die. That causes the muscles to atrophy.

The disease is in some ways similar to ALS or Amyotrophic Lateral Sclerosis. Although the root causes are very different and the progression of the disease is different, both of them involve the loss of function of motor neurons. ALS is often referred to in this country as Lou Gehrig’s disease because of the famous baseball player who had it. In Europe especially the UK is referred to as Motor Neuron Disease. Its most famous patient was the late Stephen Hawking. So while there are some similarities, they are completely different diseases.

What Went Wrong?

Okay how does it work? Why did I end up like this?

In every cell of your body you have 23 pairs of chromosomes. Chromosomes are coiled up strands of DNA. Sections of the DNA strands called “genes” are strands of instructions that tell your body how to do different things. DNA is made up of 4 molecules chained together like a twisted ladder. You’ve probably seen drawings or models of it. Each rung of the ladder is made up of two molecules linked together. The 4 molecules that make up DNA are called A and T or C and G. The order of these four letters is a kind of code. The strings of code are divided into sections called exons and introns. The exons are the code and the introns are just sort of filler material.

In your number 5 chromosome at a location called 5q13.1 is a gene called SMN 1. SMN stands for “Survivor Motor Neuron” gene. It produces a protein called the SMN protein. Without a sufficient quantity of this protein, your motor neurons die and then your muscles weaken and presto… You’ve got SMA.

In people with SMA like me, there’s a mistake in the SMN gene. The seventh exon is missing. Think of the chromosome is a strip of movie film where you cut out a section and spliced it back together. When DNA gets copied when your cells duplicate, it tends to get copied in chunks. The ends of the chunks are like pieces of a puzzle that only fit together in certain ways. You have probably worked a jigsaw puzzle where there were pieces that almost fit even though they weren’t the right ones. It just so happens that the ends of the chunk around that particular exon are similar enough that under the right conditions (I guess I should say wrong conditions) they can stick to one another forming a small loop. That leaves a gap in the film strip and even though they aren’t quite right, those pieces end up sticking to each other and the little ring of DNA gets lost.

Once a mistake occurs, it’s passed down generation after generation through carriers of the disease. But it is technically possible that that mutation can spontaneously occur and someone with no history of SMA in their family could get the mutation when that little ring accidentally forms.

Once you got a screwed up SMN1 gene, it’s not going to make the proper protein, and so you’re screwed. Almost…

As Jeff Goldblum famously says in all of the Jurassic Park movies “Life finds a way”. Mother Nature or God or natural selection or whatever you believe in… Has a backup plan. There is another gene that everyone has further down the fifth chromosome called the SMM2 gene. It’s a backup copy. In fact some people have multiple backup copies. But there’s a problem… The backup got corrupted. In the long strings of A, T, G, and C there is a one letter mistake. Think of it as a single bit error in a computer code. Everybody’s SMN 2 genes have this mistake. The end result is that SMN2 only works on average about 20% of the time. So even if your SMN1 gene is totally screwed like mine, the SMN2 occasionally makes up for it. But it’s just not enough.

How Does the Inheritance Work?

Now that we’ve established that the cause is a missing chunk out of your SMN1 gene, how does that get passed on?

As mentioned previously everyone has 23 pairs of chromosomes. You have 2 number 1, 2 number 2 etc. You’ve got one of each from each parent. The problem is in my fifth chromosomes. We each have two of them. One came from mom and one from dad. My mom and dad were both “carriers” of SMA. That means that in their fifth chromosomes they had one that was normal and one that was damaged by having that number 7 exon missing. They don’t exhibit the disease because their good copy on their other number 5 chromosome covers it up.

When I was conceived, I had a 50-50 chance of getting either a good copy or a bad copy from each of them. If I got the good one from both mom and dad (25% chance) I would’ve been okay as would my children and children’s children etc. If I had gotten a good one from mom and a bad one from dad or vice versa then I would be a carrier as well. Each of those has a 25% chance for a total of 50% chance of being a carrier. The remaining 25% chance is that I got the bad copy from both. Lucky me!

My sister Karen obviously does not have the disease so one of three things has happened. Either she got 2 good copies, she got a good one from dad and a bad one from mom, or she got a good one from mom a bad one from dad. That means there is a 66% chance she is a carrier. If her husband is not a carrier as well, her kids are at no risk of actually getting the disease. Her only son Cole is fine.

Because we know that my mom and dad were both carriers, that means that at least one grandparent on each side was a carrier. That means that my Uncle Keith on my dad’s side or my late Aunt Jody on my mom’s side have a 50-50 chance of also being a carrier. If they are not carriers, none of my cousins are at risk nor will their descendants carry it. If Keith or Jody are carriers, my cousins could not exhibit the disease unless Aunt Barbara or Uncle John were also carriers. None of my cousins nor their kids have exhibited the disease. If my Aunt or Uncle were carriers, my cousins have a 50-50 chance of being a carrier themselves.

But what about me?” Pardon me quoting the old joke “I have no children… That I know of :-)” and at age 64 with no romantic involvement in my life I doubt that I will. But there’s no reason I couldn’t have children. What about them? People who have the disease of course pass it on to their offspring and so technically they are carriers but usually we reserved the word “carrier” for someone who carries the gene but does not exhibit the disease. But anybody with the disease does automatically pass it on. I’ve got two bad copies of the gene so at minimum, all of my kids would be carriers. If my wife was not a carrier then that’s all the risk we would have. If she was a carrier, half of our kids would have SMA and anyone who did not have it would be a carrier. If my wife had SMA, we would both have 2 bad copies and therefore ALL of our children would have two bad copies and have SMA.

How Do You Test for SMA?

They just take a blood sample and send it to a genetic testing lab. They sequence your number five chromosome and look for the missing chunk. If you’ve got a double deletion like me you have the disease. If only one of your two number five chromosomes has a deletion they can tell that you are a carrier. These tests can also be performed prenatally using amniocentesis or by testing in vitro cells prior to implantation. Which brings us to our next topic…

How to Cure SMA

Short version… Become a Nazi.

Either kill or sterilize everyone who is a carrier. They will never pass on their defective qualities and in one generation SMA will be virtually wiped from the planet. We become a super race of genetic perfection and rule the world. There is the possibility of spontaneous mutation by creating that little DNA ring by mistake that I talked about earlier. We can kill those people off as we find them.

Alternate solution only slightly less drastic… You can test for SMA by doing amniocentesis. If it turns out that your unborn child will have SMA, abort it.

Further solution only slightly less drastic… If you do in vitro fertilization (otherwise known as a test tube baby) conception occurs outside the womb. The fertilized egg is allowed to grow until it is a small clump of cells. You then extract a cell and test it for SMA. If it has SMA, you flush the embryo down the toilet and only implant the healthy ones. Sorry… that toilet comment was just speculation for dramatic effect. In reality the embryo is probably incinerated in an oven. We are Nazis after all. Right?

While I don’t know of anyone actually going around sterilizing or killing SMA carriers these days, I’m sad to report that abortions and selective in vitro procedures are being done to avoid having children with SMA.

In short… These people believe that people like Chris Young ought to have never been born.

Pardon me if I take that personally.

I’ve never been opposed to abortion just because the Catholic Church says so. I’ve always felt it was a really bad idea through my own innate conscience and sense of morality. Then I am especially opposed to abortions which implement such selective breeding practices. It turns human life into an animal commodity for breeding purposes rather than the sacred thing that it is.

You could ask hypothetically what would a person be like if they had not caught some disease like polio or AIDS? You can ask what if they never suffered a spinal cord injury or had cerebral palsy due to anoxia during birth. But you can’t say what would someone with SMA be like without it. It’s genetic. It’s part of who we are.

Despite the harshness with which I have described this situation, I am sympathetic to parents who are facing tough decisions when they know that they have the potential to create SMA kids. The situation is especially complicated by the fact that there is no genetic test to determine which type of SMA a particular kid will have. As a Type 2 person who has lived 63 years and had a pretty good life in which I’ve made lots of effort to make the world a better place because I was in it, it’s easy to condemn anyone who doesn’t want people like me to be born. On the other hand Type 1 kids have it much, much harder. As I mentioned before, without serious intervention their life expectancy is 18-24 months. That intervention involves having a trach, ventilator, G-tube for feeding, 24/7 care, and a seriously impaired ability to do much constructive with their lives. Nobody wants to see their kids suffer.

I feel a strange connection to the Type 1 kids. Basically I’m in the same shape at age 63 as they are at age 2-3.

I have no problem whatsoever with parents who choose not to have children if they feel ill prepared to provide adequate care for a child with SMA. All parents should assess their capacity to deal with parenthood and all that it might entail before deciding to have a family. That is the responsible thing to do whether you have genetic risk or not. But I draw the line at selective breeding.

One also has to take into consideration that there now is a treatment for SMA if not a cure. The mortality of Type 1 is not as significant as it once was. More on that in the next section.

I recently encountered a family online who was considering preselection of in vitro embryos to avoid having a kid with SMA. They had already lost a Type 1 infant and could not bear the idea of suffering another such loss. They were opposed to the idea of abortion so I give them some credit for that. I can’t begin to imagine in my wildest dreams what they’ve been through. So it’s tough for me to sit in judgment of them. I really can’t.

On the other hand… I also met a family online who had a kid with SMA Type 1 and were inspired by the experience to adopt other special needs children.

Life finds a way.

How Do You Treat SMA?

Up until recently you couldn’t do jack shit. All you could do is try to mitigate the consequences of the disease.

I wore a back brace from the time I was five years old until my early 20s. It was basically a corset made of cloth and metal stays that we bought from the Spencer Corset Shop. Then in my 20s I switched to a plastic body cast the kind used for treatment of scoliosis. My spine has 2 curves in it 90° each. For various reasons at an early age I quit going to orthopedic doctors because they weren’t doing anything for me. That was a mistake. I should have had spinal fusion when I was a teenager. Most kids with SMA these days do get spinal fusion. They also get metal rods earlier than that that can be adjusted as they grow.

The biggest risk for people with SMA is respiratory issues. I’ve had pneumonia a couple of times. Most people with SMA use a device called a “Cough Assist” that helps them keep their lungs clear. They use it a couple times a day for prevention and every few hours if they have a cold or flu. Until recently I never knew such a device existed and I’ve never used one. I didn’t get my diagnosis until I was nearly 40 and none of my doctors knew what I had or what to do about it. When it comes to SMA specific medical when down care I’ve basically had none.

I started using oxygen at night to help me breathe better. That came after I developed congestive heart failure in my early 20s. Eventually I added a CPAP machine along with the oxygen. Then about 20 months ago I had to have a trach installed and the CPAP got replaced by a ventilator that I still use with oxygen but only at night. Here is the story of how I ended up with a trach.

Pray That They Listen to the Man with No Voice

Swallowing is extremely difficult. Two years ago in May I got to the point where I couldn’t swallow very well anymore and so I had to have a G-tube installed. As I mentioned before, the Type 1 kids end up on ventilators and with G-tubes at a very early age. I’ve encountered many Type 2 people who also got a G-tube much earlier than I did and is not unusual for them to need a trach and ventilator eventually as well. Here is a blog post about when I got my G-tube.

Tough to Swallow

The issue of not being able to directly treat the disease but only its side effects changed dramatically in December 2016 when the FDA approved a new drug called “Spinraza”. It has shown dramatic positive effect on the young severe Type 1 patients. It’s not a cure. It doesn’t always work. In fact in the clinical trials it only works in about 56% of the patients. But considering the severity and mortality of Type 1 patients, it is a real godsend. When it works, the kids stay off the ventilator, there are even signs that some of the effects of the disease are reversed.

The positive effects of the drug were so dramatic during clinical trials that they opened the test from its double-blind format. Typically half of the patients get the drug and the other half get a placebo. But because it’s got such high mortality, once they discovered positive benefits they could not morally withhold the drug from the other kids. For the remainder of the trials everyone got the real deal.

The clinical trials were only for Type 1 kids who were very young, the FDA approval was for all types and all ages. I can get the drug if I wanted. The problem is, I can’t see it having any positive effect on someone my age and my state of deterioration. It’s not just a simple pill. It involves spinal injections in an outpatient hospital procedure every few months for the rest of your life. One time an anesthesiologist looked at my spine to see if I could get an epidural for some surgery I was having. He took one look at me and said “There is no way I’m sticking a needle in that crooked thing”. The long-term side effects of the drug are yet to be determined but respiratory issues are one of the listed side effects.

Because this is a so-called “orphan drug” for which there is a very, very small market, the drug company has to charge exorbitant prices to recoup their development costs. The first year of treatment costs about $750,000 and every year after that $450,000 per year for life. Both government and private insurance have been very reluctant to cover it. If they do it is more likely only for the very young Type 1 patients although some older Type 2 and 3 are getting the drug. It also depends on what country you live in. My friend in Canada cannot get it. Much of the UK cannot get it although Scotland does support it. Australia does. Brazil doesn’t. It’s hit and miss around the world.

Keep in mind that the progression of the disease is that the motor nerves die and that makes the muscles atrophy. This does not regrow the motor neurons. It only prevents them from dying. So the best case scenario for older patients is that they get no worse. If I was in my 20s I would be beating down the door to wherever they had it to get it. But at age 63, with limited upside and potential downside, it just doesn’t make sense for me.

Here is a blog that I wrote in December 2016 the day after the FDA’s approval came. It recounts the story of why it took me so long to get a diagnosis that I did have SMA. It also tells a humorous story about my encounter with the head of the Genetics Department where I used to work as a computer programmer. Although it includes some of the information I have already discussed above, if you’ve not read it before I encourage you to check it out.

I’ve Got That One. It’s called SMA Type II. And now it finally matters!

Here is the link to another blog I wrote last month about the cost of Spinraza and those who seek to blame the drug company for its exorbitant price.

The Cost of Life-Saving Drugs

How does Spinraza Work?

I mentioned that everyone has an SMN 2 gene and possibly multiple copies of it but they don’t work very well. Because of that one bit error, the process of copying DNA to RNA and RNA creating the protein just doesn’t work. Spinraza makes it work better. It makes it so that the failure of SMN 2 to properly create the SMN protein is not as bad. There has been a big focus on how many copies of SMN 2 you have because that makes Spinraza potentially more effective.

I wondered what causes the difference between Type 1, Type 2 and Type 3 and speculated it was how many copies of SMN 2 that you have. But apparently there are other factors. There is a variability in how well SMN 2 works from person-to-person. So it’s a combination of a lot of factors. Some insurance companies will only approve Spinraza for people who have multiple copies of SMN 2.

What Else Can Be Done?

There is a new treatment in trials that basically involves what’s called gene therapy. It is a treatment that actually manipulates your DNA. I’m not sure the details but I doubt that it’s fixing the missing section of the SMN 1 gene. It’s more likely it’s patching that one bit error in SMN 2. The good news is that if it works, it’s a one time treatment. The bad news is, other forms of gene therapy for other diseases have proven to be even more expensive than Spinraza. That is because once you get the treatment, they can’t sell you treatment anymore. So they have even less opportunity to recover their development costs. Let’s of people are who do not have access to Spinraza are hanging their hopes on the new gene therapies. But I think they are going to be severely disappointed because gene therapy will be even costlier upfront even if it is cheaper over a lifetime. Who knows what the government or private insurance companies will think of that.

Okay I’ve edited this section in 2019 because I now have more information on the gene therapy it’s called “Zolgensma”. It has been recently approved by the FDA for children under 24 months. It is not yet approved for older patients. The children can get it as an IV injection but for older patients that might cause liver damage so it would have to be a spinal injection the same way as Spinraza is administered. As I predicted in this previous paragraph written in 2018, it is insanely expensive. A single dose is $2.1 million. But that’s all you need is a single dose. Compared to the fact that you have to take Spinraza for your entire life at about 1/2 million dollars per year it’s actually cheaper. But for one dose it is now the most expensive drug in the world. I also did not understand how the drug worked but I have a slightly better understanding now

It uses a virus to insert a good copy of SMN1 into your cells. Viruses don’t have any mechanism for reproducing. They infect yourselves and trick yourself into making copies of the virus. This gene therapy tricks yourselves into making copies of the SMN protein. It basically cures the disease. But you have to get it quick enough before the disease has done all its damage. Again it can’t regrow dead motor neurons.

Additionally we should report there is a third option on the table or it soon will be. It’s called “Risdiplam”. It is an oral treatment that works the same way as Spinraza in that it makes the SMN2 gene work better. It is still in clinical trials but is showing good progress in increasing the level of SMN protein in patients. It’s too early to tell if that will actually improve their condition but chances are it will. It is being tested on patients over a wide variety of ages and when it becomes available would likely be available for a wide age group unlike the gene therapy.

There was a recent article linked here https://smanewstoday.com/2018/07/23/motor-neuron-death-sma-linked-abnormal-rna-editing-study/ It explains why the motor neurons die off when they don’t have enough SMN protein. It has to do with the regulation of 2 other proteins called Mdm2 and Mdm4. If they could find a treatment that would regulate these other proteins then you can keep the motor neurons from dying without fixing the SMN problem itself.

There is also a lot of talk about using stem cells to regrow the dead motor neurons. Regrowing nerve cells from stem cells has been the goal of all sorts of spinal cord injury treatments. To date that has not come even close to working. Christopher Reeve expected to be walking in 10 years after his spinal cord injury and it didn’t happen. He died years ago waiting on it to happen any day and people are still waiting.

What Do You Want to Know?

Those who know me, know how long-winded I am and if you made it this far then I’ve proved that reputation. But there are a million other question we could answer. What do you want to know about SMA? About my life with SMA? Don’t hold back anything. If we are going to create awareness then let’s create some full awareness. I would rather you not respond to comments on this blog but ask me your questions on Facebook where I’m going to post the link to this article. I will also posted on my Google+ page so you can ask there but I would rather reply on Facebook. You can read my page on Facebook even if you are not a Facebook member. Or if you are a member you can follow me without friending me. Or go ahead and friend me. Find me at https://www.facebook.com/cyborg5

I mean it when I say ask me anything. It is EXTREMELY UNLIKELY you can offend me. (Never say never). There is a slim chance I will choose not to answer something personal. But there is a much greater risk that I will answer your question in very much more detail than you ever really wanted. So ask me anything but beware you might get an encyclopedia worth in reply. If it is a long answer I may make another blog out and it. If it’s a quickie I will just answer on Facebook.

More Resources

I’m also a member of five or six Facebook groups for families or patients with SMA. They are closed groups that I can get you links to request membership on request.

The Cost of Life-Saving Drugs

In this essay I want to explore the ethics and responsibilities of drug companies when it comes to pricing of lifesaving drugs. We’ve seen numerous news reports about drug companies increasing the prices of EpiPens, AIDS drugs and other lifesaving pharmaceuticals. In extreme cases the CEO of these companies have been coldly unapologetic and shown signs of unbridled greed as the driving force behind these price increases.

However it is my opinion that we cannot paint the entire pharmaceutical industry in such broad strokes. In the case of so-called “orphan drugs” that treat rare diseases, the cost of developing such drugs is as high or higher than any other pharmaceutical yet the potential market can be quite small. With a small market and a small potential return on investment, the prices on these drugs necessarily can be enormous.

Case in point Spinraza. About 18 months ago, the FDA approved Spinraza for the treatment of Spinal Muscular Atrophy. I have Type 2 of that particular disease. Although I will soon celebrate my 63rd birthday, those with the more severe Type 1 SMA have extremely short life expectancies. In clinical trials on Type 1 patients, the drug greatly reduced the effects of the disease or at minimum halted the progression of the disease in over 50% of patients treated. Because Type 1 has serious mortality, they opened up the double-blind study and took patients off of the placebo and gave them the real drug once they realized he was having a positive effect. It would’ve been unethical to continue to give placebo to other patients in the trial once a significant benefit had been demonstrated. So I have to give them a tip of the hat for that choice. Although clinical trials only targeted infant Type 1 patients, the FDA approved the drug for all Type 1, 2, and 3 patients of any age despite the lack of evidence of its efficacy for other types and ages.

The drug is marketed by a company called Biogen. Biogen, which is licensing Spinraza from Ionis Pharmaceuticals, has set the list price for one doss at $125,000. That means the drug cross $625,000 to $750,000 to cover the five or six doses needed in the first year, and about $375,000 annually after that, to cover the necessary three doses a year. Patients will presumably take Spinraza for the rest of their lives. https://www.nytimes.com/2016/12/30/business/spinraza-price.html

Administration of the drug requires an outpatient procedure to inject it directly into the spinal fluid. This procedure can be particularly difficult on older patients because many of them have had spinal fusion surgery which complicates things greatly. Biogen has been working hard to train a variety of hospitals around the world in the administration of the drug. They’ve also been working hard to work with government agencies and insurance companies to see to it that the cost of the drug is covered.

Getting coverage has been an uphill battle. The large expense, the incomplete data on its efficacy for older patients or for Type 2 and 3 patients has made this a tough sell.

Recently on Facebook in a number of groups related to SMA, I’ve seen several messages which are so critical of Biogen that they blame the company for the death of every SMA patient since the drug was approved. Week after week there are postings of obituaries of SMA patients with the accusation that their greed is responsible for the death of another victim. These posts have gone on to suggest in some cases that the drug should be given away for free. Note that these complaints against Biogen don’t ask that the drug be provided at cost. They seem to suggest that it ought to be completely free. If our entire healthcare system were to be held to this unreasonable standard, there would be no healthcare system at all. Doctors, nurses, and support staff could never be expected to work for free. Hospitals would never be built. Equipment could not be purchased to operate such facilities.

It seems to me that such accusations against Biogen are unsupported by any objective facts and display an unreasonable expectation on our healthcare system. We live in a world where healthcare is provided by either private insurance or by government programs. If one wanted to take the radical step of blaming someone for the death of these children, I would think that the blame would more correctly be placed on government agencies and insurance programs which refuse to pay for the treatment.

Let’s look at the cold truth about developing drugs in general especially orphan drugs.

Although there has been much SMA research supported by charitable efforts such as CureSMA.org and MDA, there is no way that these efforts have entirely paid for the development of Spinraza. In addition to the cost of search for such treatment, the clinical trials necessary to get such a drug approved are extremely expensive. As mentioned previously, Biogen has been working to get the drug approved in other countries around the world and to establish treatment centers capable of safely delivering the drug around the world. Naturally their initial focus has been on the US because that’s where the initial regulatory approval has been obtained. Expansion of these efforts to other countries with other regulatory procedures is no doubt a costly and time-consuming effort.

When they say that the cost of the dose is $125,000, that’s not manufacturing costs alone. The pharmaceutical company has to recoup tens or hundreds of millions of dollars it has invested in developing the drug, getting it approved, and getting it to market. The expansion of the market to other countries and other regulatory jurisdictions has to take a big piece of that as well. If we had to raise until the drug pays for itself in order to expand coverage beyond the US, there would be many more deaths then we are seeing now.

Although the effects of the drug have been phenomenal in many cases, it is only showing positive results in about 57% of those receiving the treatment. Many of these patients are only showing positive results after being on the drug a year or more. Once you get approved for the drug, it can be difficult to determine if you’re going to be one of those 43% for whom the drug has no apparent benefit. Only recently has there been any data to show its effectiveness in older patients or in Type 2 or 3 patients. This makes it a very tough sell for either private or government insurance programs. If we can believe statements from the company at various conferences and conventions, they are working hard to convince public and private insurance not only to approve the initial treatments but to continue treatments for a reasonable period of time to show that a particular patient will benefit.

Unfortunately we live in a world of limited medical resources. While we are arguing the ethical issues of paying for treatment for SMA, there are countless other medical conditions which face funding crises. We are faced with the tough choices of providing extremely expensive treatments with limited efficacy versus using those same dollars on other treatments for other diseases and conditions which have more proven track records. That is cold and cruel to say that but unfortunately we live with a healthcare system that has to impose triage to do the most good for the most people.

This is clearly not a case like the EpiPen or AIDS drugs that had been already marketed and priced and were later marked up hundreds of percent in price for no apparent reason. This is a brand-new treatment with an extremely limited market that is difficult to administer and for which there is only limited supporting data to justify its widespread use.

I don’t know what the actual costs of the drug are. I don’t know how rich Biogen and its shareholders are profiting from this new product. I do know that had Biogen and Ionis not invested the time and effort necessary to get the drug where it is today, there would be a lot more dead kids. I would think patients and their families would be grateful for the efforts that these companies have made and be less likely to paint them as greed driven coldhearted murderers.

Until I see hard evidence that there is some sort of price gouging going on with this treatment, I’m going to prefer to give them the benefit of the doubt and to be grateful for all of their efforts.

Now some disclaimers… I do not own stock in any company whatsoever. I have no ties to the pharmaceutical industry in any way. I have chosen not to pursue Spinraza treatment because of age 63 I seriously doubt it would do me any good. I have severe scoliosis which would make spinal injections extremely dangerous if not impossible. Other side effects such as respiratory infections would present a dangerous risk given my overall unstable health. If I were younger or in better shape I would most likely pursue the treatment aggressively. And if I had difficulty in getting approved for it, any anger I would have would be directed at government or private insurance and not the pharmaceutical companies.

Frampton Comes Alive Again… And so Do I

Last Friday I went to Deer Creek Music Center with my sister to see a concert featuring The Steve Miller Band and Peter Frampton. It was the first concert I’d been to in 2 years and the first evening event I had ever planned since my hospitalization in December 2016. This is the story of my decision to risk going to the concert despite my concerns about stamina. I talk about what the concert meant to me in light of my health risk and additionally as a nostalgic look back at some of my favorite music from the 70s.

Concerns Over My Stamina

There were lots of other concerts and activities over the past 18 months that I would’ve liked to have seen. Among them Lady Gaga, Billy Joel as well as numerous other hockey games, movie opportunities, and church events. Since I’ve been on a trach and my health hasn’t been all that great the past year and a half I just didn’t think I would have the stamina for a late night event. I’ve also resisted the opportunity to go back to teaching class at my church because I don’t want to make commitments to be somewhere when I’m not sure it’s going to be a “good day” or a “bad day”.

In the months following my hospitalization it was not unusual for me to have problems with my back, hip, or other issues that would send me to bed in the early evening or even sometimes in the afternoon. Although I have proven that if I take my suction machine with me I can safely go to daytime events such as movies or afternoon hockey games, sometimes I have a really bad lung day that can require me to be suctioned as frequently as every 30 to 45 minutes.

Even on a good day stamina is an issue. I typically start my final G-tube feeding at about 8:30 PM and go to bed immediately afterwards. I watch TV until about 11 PM when dad comes in and puts me on the ventilator. Although I used to watch a lot of the late-night talk shows, it’s not unusual for me to fall asleep right away after a few minutes of the evening news. I still watch the talk shows but I watch them on DVR the day after.

However in the past few months things of been relatively calm and stable. It’s been a long time since I had to go to bed really early. On a couple of occasions there have been family gatherings here in which I didn’t get to bed until after 10 PM and although I was tired, it wasn’t too bad. Of course it’s one thing to say I can stay up late when I’m here at home with family and can go to bed whenever I want. It’s something entirely different to spend major dollars on concert tickets, drive to the far northeast side of town, and tried to stay up till midnight.

I watched the concert schedule closely looking for someone that I wanted to see as a test case. They had to be someone worth the money and effort to try to go. But they had to be someone not too special that I would be horribly disappointed if I had to cancel at the last minute or perhaps worse yet that I would feel compelled to risk going even if I really wasn’t up to it on that particular day.

Let’s Go

When I saw that The Steve Miller Band and Peter Frampton were coming June 15, I thought long and hard about it and finally decided to go. I had discussed it with my sister Carol and she was on board. She had some health problems of her own in May but had recovered from those. She still going to have some follow-up surgery but not until late June. It seemed like everything was aligning just right to make this possible. There were other shows in July or August that I might have preferred to see but I was concerned the weather would be much too hot. Mid-June was more likely to be reasonable temperatures.

When I finally decided to purchase tickets, I was fairly certain they would be available at this late date. Neither of these bands are particularly hot superstars likely to be anywhere near sold out. Although you have to be a little bit picky because you don’t know what the availability of handicap seats will be, I was pretty confident I would find something.

My usual seats on the left side wheelchair section were booked reasonably full. The right side wheelchair section however only had one pair of seats taken and the rest was open. For some reason whoever bought those seats did not take the preferred location at the left end of the aisle which gets you just a tiny bit closer to the center and a better viewing angle. I clicked on the tickets and ordered them.

Much to my surprise, the tickets were over $100 each. Three or four years ago I had seen other 70s groups like “Yes” or “Journey” and only paid about $60 each. I had paid a little over $100 to see “Elton John” which was quite reasonable considering what a superstar he is. So apparently ticket prices have really gone up since the last time I tried to buy anything. I think you can still get lawn seats at Deer Creek for as little as $20 but that just doesn’t work for me in a wheelchair.

Although I usually like to sit on the left side because it’s easier to get to that section from the main courtyard of the venue, it turns out that the right side wheelchair seats are a better choice because they are constantly in the shade. Last time I went to see “Yes” it was over 90° and I really roasted. It was the hottest I’d ever been at a concert. There is a canopy over the seating area but as the sun sets, it shines under the canopy and almost right in your face until nearly sunset. I watched the weather forecast all week long. There had been a lot of rain the entire week. In contrast to the “Yes” concert, the “Elton John” concert was 65° and a constant rain. It was the coldest I had ever been at a concert. Even under a canopy you still have to get from the car to the seats. I have rain ponchos but they are a pain to use. Fortunately the forecast for Friday was consistently saying only a small chance of showers. Initially they said the high would be 85° which would be not too bad but by the time the concert came, the forecast had gone to 88° or 89°. Much hotter weather was coming in the days following. At least the humidity was not too bad.

Peter Who?

The official billing for this concert said “The Steve Miller Band” and “Peter Frampton”. That indicated that Steve Miller was the main act and that Frampton was the opening act. I was really more interested in seeing Peter Frampton than I was Steve Miller. That sort of figured into my strategy for picking this concert. I had concluded that if I got too uncomfortable or tired or had breathing difficulty I could see Peter Frampton perform, leave early, and not be that disappointed about missing Steve Miller. But unless you are as old as I am, you may be asking yourself “Who the hell are these guys?” Some of the following is my own remembrances with a healthy assist on dates and times courtesy Wikipedia at the following link. https://en.wikipedia.org/wiki/Peter_Frampton

Peter Frampton is a British singer, songwriter, and guitar virtuoso born in 1950. He has a bluesy rock style and a mellow baritone voice. He uses a “talk box” guitar special effect that is one of his signature sounds. He was a bit of a musical prodigy teaching himself to play guitar at an early age. He later took classical music lessons. He attended the same high school as David Bowie where his father was a teacher. His father was David Bowie’s art teacher. Later in life he actually worked with Bowie on several projects. He played in a variety of small bands in his early teens and then at age 18, he joined with Steve Marriott of Small Faces to form Humble Pie. After four studio albums and one live album with Humble Pie he started a solo career in 1971 and released several albums none of which had much commercial success. His 1975 album “Frampton” was certified gold but only made number 32 on the US charts.

Whenever someone has a hit song and is never heard from again, they are described in the industry as “A One Hit Wonder”. Among my favorite such artists are Janice Ian and her 1975 single “At Seventeen” or Zager and Evans 1969 hit “In the Year 2525”. In some ways Peter Frampton is a “One Double Album Wonder” rather than a “One Song Wonder”.

In 1976 he released a double live album titled “Frampton Comes Alive!” and everything changed. For me that album title had a double meeting. It wasn’t just that he had recorded a live album… It was as if he was just born himself because prior to that, I had never heard of him and neither had many other people. It was like it was a debut album. I can’t begin to describe the impact of that album. I was in college at IUPUI and EVERYONE was talking about it. The entertainment writers in the school newspaper went nuts over it. It was a phenomenal megahit.

According to Wikipedia, in addition to the success of the album, three of the songs “Baby, I Love Your Way“, “Show Me the Way“, and an edited version of “Do You Feel Like We Do“, were hit singles. The latter two tracks also featured his use of the talk box guitar effect. The album was recorded in 1975, mainly at the Winterland Ballroom in San Francisco, California, where Humble Pie had previously enjoyed a good following. “Frampton Comes Alive!” was released in early January, debuting on the charts on 14 February at number 191. The album was on the Billboard 200 for 97 weeks, of which 55 were in the top 40, of which 10 were at the top. The album beat, among others, Fleetwood Mac‘s “Fleetwood Mac” to become the top selling album of 1976, and it was also the 14th best seller of 1977. With sales of eight million copies it became the biggest selling live album, although with others subsequently selling more it is now the fourth biggest. “Frampton Comes Alive!” has been certified as eight times platinum. The success of “Frampton Comes Alive!” put him on the cover of Rolling Stone, in a famous shirtless photo by Francesco Scavullo. Frampton later said he regrets the photo because it changed his image as a credible artist into a teen idol. His baby face good looks and flowing shoulder length curly hair also contributed to that image.

That teen idol image was bolstered by his unfortunate participation in the cheesy musical fantasy comedy film “Sgt. Peppers Lonely Hearts Club Band” which featured Beatles music cobbled together into some sort of ridiculous story in which Frampton played Billy Shears and the Bee Gees played The Lonely Hearts Club Band. I read somewhere that the participants in the film were told that the Beatles had fully endorsed the project and Paul McCartney himself would appear at the end as Sgt. Pepper to song “Get Back” but it had all been a lie by producer Robert Stigwood to get people to sign on. Billy Preston who played piano on the original Beatles version of the song ended up singing the song instead. It also featured Steve Martin as “Dr. Maxwell Edison”, Arrowsmith as “Future Villain Band” and Alice Cooper as “The Sun King”. Check out the IMDb.com trivia page for the film for other interesting facts. It’s one of my favorite guilty pleasure terribly bad movies and was the first movie I ever bought on VHS tape when I first bought my VCR. I think I paid $10 for it in a bargain bin when VHS movies were typically selling for $40 in those days.

Although Frampton continued to record over the years, he has never really had anything close to the success of the live album. He did win a Grammy for his 2006 instrumental album “Fingerprints” (more on that later). But for the most part you only hear his old hit songs played on classic rock radio stations.

Today at age 68 he is bald, has gray hair, and although handsome he looks nothing like the baby face teen idol that he was at the height of his career. Fortunately his voice is still as smooth and mellow as it always was and his guitar skills are as sharp as ever.

https://www.facebook.com/PeterFrampton/

https://en.wikipedia.org/wiki/Peter_Frampton

Steve Who?

While I could tell you “Peter who” pretty much from my own memory except for some of the dates and details from Wikipedia, I would be much more likely to be among those who would ask “Who the hell is Steve Miller?”.

Just days before the concert I remarked to a friend “I’m not sure if I will know much of the music. Other than ‘Fly Like an Eagle’ I don’t know if I could name another song.” Going into the event, my feeling was almost like they were a one hit wonder as well. My friend said “You will recognize much more than that.” without explanation. So just to warm up for the concert, I went online and downloaded “The Steve Miller Band Greatest Hits”. Much to my surprise I found myself saying repeatedly “Of course I know that song… I just didn’t remember it was Steve Miller Band.” Songs I instantly recognized upon seeing the list were “The Joker”, “Jet Airliner“, “Abracadabra”, “Jungle Love”, “Take the Money and Run”, “Rock’n Me”. Others such as “Dance Dance Dance” and “Wild Mountain Honey” although not immediately recognizable were familiar once I heard them again.

Other than listening to this Greatest Hits album one time through and playing a couple of the bigger hits a couple of times, that was all the preparation I needed for the Steve Miller Band portion of the show. Although I remember these songs as hits and I really enjoyed them, they really don’t have the personal significance or nostalgic connotations that Peter Frampton’s songs have for me. They are just fun classic rock songs that would be great to hear live.

The band was formed in 1968 and has sold 80 million records. Steve Miller was inducted Into the Rock ‘n’ Roll Hall Of Fame in 2016. More details on the group can be found on their Wikipedia page.

https://en.wikipedia.org/wiki/Steve_Miller_Band

https://www.facebook.com/stevemillerband/


Getting There Is Half the Fun

On a typical day I wake up about 8 AM and dad takes me off the ventilator. Using my laptop in bed I usually check Facebook, email, play some Candy Crush and maybe watch a little TV until 10 AM when my home health aide arrives to get me bathed, dressed, and up in the wheelchair. Although I wasn’t sure I would be able to sleep late, I asked her to come at 11 AM instead of 10 AM at least to give me one less hour sitting up in my chair and my back brace. I hoped that would extend my longevity. As it turned out I did not sleep in late but it was good to have that extra hour in bed anyway. I told my aide that I woke up humming the theme song from “The Muppet Show”. I was singing “It’s time to play the music. It’s time to light the lights. It’s time to get things started on the Steve Miller Band and Peter Frampton concert tonight“. She did her usual excellent job of getting me prepared and getting me comfortable. My back brace was quite comfortable that day although I did have a little bit of hip pain. I took some Tylenol at 4:30 when I did my dinner time G-tube feeding.

I tried to pace myself all day long and not do anything strenuous. I spent part of the afternoon using Google maps to try to find a good route to the Deer Creek Music Center in Noblesville. By the way I refuse to use their sponsor names. Initially it was just called Deer Creek Music Center but then the sponsors got involved. It wasn’t too bad when they were the Verizon Wireless Music Center. Then their sponsor was Klipch who makes speakers and headphones. I still don’t know how to pronounce that word. Now they are sponsored by Ruoff Mortgages which I am not sure how to pronounce either and I never heard of before. Of course I suppose the fact that I never heard of them is why they spend money getting their name on a venue.

I live on the northwest side of Indianapolis just north of Speedway. Deer Creek technically is in Noblesville in the far, far northeast side. The obvious route is to take I-465 around the north leg, get off on I-69 and there is an exit very near Deer Creek. But the traffic in that area especially during rush hour is horrendous. Deer Creek used to be out in the middle of nowhere but now is across the street from a major shopping mall and is surrounded by lots of other commercial development and apartment complexes. At one point the owners considered selling the place not because it was unprofitable to run an outdoor music venue but because the land values in that area had increased so much it was almost worth their while to sell it. I’m glad they did not sell it and close it down. It’s a great place to see a concert.

Google maps suggested we go across the center of town on 38th St. and then to Binford Boulevard which turns into I-69. Going through the center of town during rush hour didn’t sound like a good way to go. But I knew that the I-69 exit where you turn off to normally go to Deer Creek is very crowded plus all the traffic around the shopping mall. I scouted out an alternate route that would get us off of I-69 early at State Road 37. Then we could cut across at 126th St., 136th St. or 146th St and it would take us right to Bowden Road and to the back entrance of the venue. It’s a “VIP entrance” for people who have paid extra for premium parking but all you have to do is drive up and tell them you want handicap accessible parking and they let you right in. I had forgotten exactly where that parking was. The Google satellite map clearly showed it and you can see the traditional blue-and-white wheelchair logos painted into the parking places.

If you type in Deer Creek Music Center (or whatever they call it) into your GPS, it takes you to the main entrance. But I was able to label the location of the VIP entrance by typing in 14680 Bowden Rd. and marking it in my favorite places on Google maps. (Click to see)

The show was scheduled for 7:30 PM. Carol said she would be here at 5 PM and we planned to leave about 5:30 but she was here before that and we decided to leave a little bit after five. We made sure we had a print out of the tickets. We packed them in the bag with my suction machine which I would need if I had lung trouble. Carol had already called the venue to ask about the availability of a family restroom where we might go if I needed to work on my lungs. Fortunately my lungs were in good shape that day and we never did need to use the suction machine except to spit up some gunk one time.

On the way out, we drove by my church St. Gabriel which was having the first night of their annual festival. That’s another evening event that I used to attend from start to finish when I was in better health. I had been director of their poker tournaments for many years but the Festival committee decided a few years ago to cancel the poker tournaments (without asking me) and with my limited stamina I haven’t attended the festival in 2 years. But it was good to see that it was still a strong event. I had sent dad over earlier in the week to buy $100 worth of raffle tickets. (We didn’t win by the way).

Going north and then east on I-465 the traffic was not too bad but as we got further along it started slowing down considerably. I was watching our route on my iPhone using Google maps and the phone’s GPS. Normally your path is marked by a blue line. But when you get to a heavy traffic area the line turns yellow or even red. It even tells you how many minutes you’re going to lose on your ETA because of the bad traffic. Apparently it gets real time traffic updates which I had never seen before because I’d never used it in a heavy traffic area. It was very accurate compared to what we were experiencing.

Google Maps suggested we get off at US 31 and go north and then across 126th Street. We thought about getting off but it looked like once you got past 31 the traffic was moving again. There was a long line of stopped traffic at the 31 exit so we went on ahead. It turns out we should’ve followed Google’s advice. There was another big backlog at Allisonville Road. We waited our way through that and got off at 37 as I had planned. We then went up to 146 and across which was smooth sailing from there. I’m sure we skipped a lot of heavy traffic by taking my little shortcut but we might’ve done better to take Google’s advice and gotten off the highway sooner.

We easily got into the VIP handicap parking as expected. Although they are marked with the accessibility logo and there are plenty of available spaces, there are no extra spaces between the marked spaces to allow you to unload out of the side of the van. We were early enough that there were plenty of empty spaces and had no trouble unloading. Similarly on the way out no one was parked next to us. I don’t think that section ever did fill up.

One of the interesting features of that area is a facility I have never seen anywhere else and never had the opportunity to use. It’s a wheelchair accessible porta pot. It looks to be about double the size of a normal outdoor facility. It has a wide door and a tiny ramp. I’ve always thought it was great that they had one of these.

In times past when I was driving my wheelchair using my hand on a joystick, the long ride from the parking lot into the venue would’ve had me worn out and basically have been impossible. Carol would have had to drive the chair for me. The slightest bump or slope made it difficult for me to drive my wheelchair. But with my new wheelchair that I got just over two years ago, I operate it by joystick in front of my mouth. It’s actually much easier for me to use that system. I’m much more independent with the mouth control. My head sits solidly in the headrest. While riding in the car I also have a strap that holds my head into the headrest. While I don’t usually use it around the house, I decided to leave it on so it would be easier to drive over bumpy ground if necessary.

There is a small footbridge leading into the venue where you go up and down a pretty good hill. The courtyard is partially covered with cobblestones. Even the concrete and asphalt pavement areas have quite a few bumps and uneven expansion joints. Getting to the right side of the venue you also have to go up and down a pretty substantial hill as you cross over a tunnel where the equipment semis drive in to unload the concert equipment. I was able to drive the entire way by myself without any difficulty although I don’t think I could’ve done so without the head strap. Going down the hill and hitting a small bump would have throne my head forward and jammed the controls into my teeth. The strap prevented that as well .

The security screeners had no problem with my suction machine in the bag. They can’t really waive a metal detector wand over a mostly metal wheelchair so they generally just waive you through. I hope terrorists never figure that out. If they ever exploit that fact, they will never let anybody into a public event in a wheelchair again.

I was the first wheelchair to arrive in that section so it was no problem getting to the far left of the seating area where I wanted to be. I was surprised to feel that the pavement in the far left end of that section was sloping forward considerably. Fortunately I have a tilt feature of my wheelchair so I simply tilted my seat backwards a few degrees and I was sitting comfortably level. The rest of the handicap section seem to be level without any adjustment but I wanted that far left location for the best viewing angle. I had been in that section before many years ago but I don’t recall there being a slope. When Deer Creek first opened there was no accessible seating. You had to sit in the aisle on the main floor and of course when everyone stands up, you can’t see a thing. The new wheelchair sections added several years ago offer great views. There is a walkway in front of you where people are walking by constantly but it is not too disruptive. You can easily see over the rest of the crowd even when they are standing up. Here is a photo of the view we had as I posted it on Facebook

There was a very tall usher standing right in front of me as you can see in the photo. I had Carol go down and talk to him and asked him to step to one side once the show started because he was directly in my line of sight. He did so and I had no other problems seeing.

Carol also took a selfie of us and posted it on her Facebook page.

Technology Failure

Before continuing the story of the concert itself, I have to tell you about a piece of failed technology that sort of complicated things for me at the concert. I didn’t get as much use out of my iPhone as I had anticipated because of battery problems. Here are the details…

I have a bracket mounted on the left armrest of my wheelchair holding my iPhone, my Ultimate Remote Control 2.0, and a battery pack to power the whole thing. The Ultimate Remote has an IR transmitter for controlling TV, cable box etc. as well as giving me an alternative way to operate the mouse and keyboard on my PC. The device also has a built-in Bluetooth device that allows me to do iOS switch control on my iPhone. Basically I can operate my iPhone by pushing just three little buttons I hold in my right hand and not having to touch the screen.

The battery pack contains an Adafruit Power boost 1000 charger and a 4400 mAh Lithium-Ion battery. It’s a slightly modified version of a device I designed for the Adafruit Learning System called a “Printy Boost” because it has a 3D printed case. It provides continuous power to my remote and it tops up the charging on my iPhone if the iPhone battery starts to drain. For some reason this day it wasn’t keeping the iPhone 100% charged. I guess using the GPS and cellular data for the Google maps all the way across town was putting too much strain on the system. I don’t have a meter on my Printy Boost battery but the iPhone battery indicator said I was down to 60% by the time I got to the constant. I had Carol unplug and re-plug the USB connecting the phone to the backup battery. It began charging again.

Because there were no other wheelchairs in the section yet, I tried using an app on my phone to take a 360° panorama view of my seating area. I started up the app and began slowly turning my wheelchair in a tight circle. In the middle of doing that, my remote control started glitching and rebooting constantly. Apparently the battery did not have enough power to recharge the iPhone and to operate the remote control at the same time. Normally when the iPhone is up around 95%, the drain on the backup battery isn’t so much and it has no trouble operating the remote and topping up the phone at the same time. But at this low state, it was drawing too much recharge current and couldn’t keep up. I had to have Carol unplug the USB port and use the iPhone’s own battery and preserve my battery to operate the remote.

Later I disconnected the remote and shut off the phone just prior to the concert for about 15 or 20 minutes to save on charge. I also shut everything down between the two acts.

Jumping to the end of the story here, the iPhone completely died just seconds after The Steve Miller Band completed its most famous hit “Fly like an Eagle” which I was recording on the phone. I was just clicking to stop the recording when the phone died. I could have plugged it back into the battery but then I would not been able to use the remote to access the phone so it was completely useless. Fortunately that was the last song followed by an encore of two other songs and the evening was over.

On the way home I went ahead and plugged in the iPhone to the Printy Boost battery just to see if it would’ve charged. By the time we got home, the iPhone battery was about 70% charged, the backup battery was dead. I’ve got a whole shelf full of additional backup batteries at home. I’m never going to a place like this again without another backup fully charged waiting in my wheelchair bag just in case.

I plugged everything in overnight and the next day was anxious to see if that last recording of “Fly like an Eagle” had been saved or was lost. Unfortunately my Ultimate Remote wouldn’t work at all. It was giving me Bluetooth error messages. I ended up spending all of Saturday afternoon trying to un-brick the device. Operating it on low voltage had caused a major glitch. I tried refreshing my software that operates the box but that didn’t help. Then I discovered the infrared TV control portion quit working as well. It turns out that was because we knocked something loose trying to plug-in the USB cable to update the software. But that didn’t fix the Bluetooth. I had to do a separate refresh of the Bluetooth chip firmware. That required taking apart the box, installing a temporary jumper, going through several steps to reflash the firmware, and reassembling the box. It took me and dad all afternoon but we finally got it working. Of course when we reassembled the box, the screws holding it together were stripped and dad had to replace them with larger screws later that evening. While I had the thing plugged in to be reprogrammed, I made a couple of minor changes to the software I had been intending to make. The whole thing took most of Saturday just to get working and of course I had to do all of this without the benefit of the mouse control that the device provides. It’s not exactly how I planned to spend my Saturday afternoon. Anyway back to the concert…

Frampton Comes Alive… Again

Just prior to the start of the concert several of the radio personalities from WFBQ “Q-95” came out on stage to greet the crowd. They were sponsoring the event in celebration of 40 years of playing classic rock on the radio. Shortly thereafter Peter Frampton and the band came on stage.

My memory isn’t good enough to remember the setlist for the entire concert so I refreshed my recollection using a great website called setlist.fm which contains the list here. If you click on the song titles in the paragraphs below, it will take you to some YouTube videos of the songs. They are not my videos and they are probably in violation of copyright except for one or two that look official. However they have tens of thousands of hits on the video and have not been taken down as yet.

The show started promptly at 7:30 PM. The opening song was “Something’s Happening” which I immediately recognized as the opening track from “Frampton Comes Alive!” (Hereinafter abbreviated as FCA.) It’s a great song to start off a show. The chorus includes the lines…

“Alright somethin’s happening
Hold tight it might be lightning
Turn up the lights I feel like dancing”

In other words “It’s time to play the music. It’s time to light the lights…” The event I had been planning for months and had been hoping I could attend was finally underway. Frampton came alive again. I was there and I was a very happy camper.

The next song was “Lying” which was from his 1986 album “Premonition” which was his ninth studio album. I had never heard it before because I was unfamiliar with his later stuff but it was a good song completely consistent with his usual style.

The third song had a long guitar solo introduction that was unfamiliar to me but eventually resolved itself into the instantly familiar “Lines on My Face“. It’s a slow, bluesy number which was the 13th song from FCA. He started off with a long introductory guitar solo. I recorded about three minutes of it on my iPhone.

The fourth song continued with another FCA number with “Show Me the Way” which was one of his biggest hit singles. It included his famous voicebox guitar special effects and it really got the crowd going. I streamed a few minutes on it live on Facebook for my friends.

He then told the story of his album “Fingerprints” which was released in 2006. He said he went to the record studio and told them he wanted to do an all instrumental album. They thought he was crazy but they let him do it. He said “It was well received by people like my family members who each bought a copy. I think all total we maybe sold 7 copies. You can still buy a copy if you feel sorry for me”, he laughed. A couple of the people in the audience yelled out “I bought one” and he replied “Oh good… We were up to 9 now!” The audience roared. He went on to say that sometime later he got a couple of big envelopes in the mail announcing that he had been nominated for 2 Grammy awards. He thought it was a mistake but he went to the ceremony anyway. “Much to my surprise at the appropriate time they read my name as winning Album of the Year” then he added (as if someone in the band had prompted him) “Well Instrumental Album of the Year”. He talked more about the album and how he had invited other artists to perform with him on it.

The song he chose from the album was “Black Hole Sun” which is a cover of a song originally recorded by Soundgarden. He dedicated the song to Soundgarden songwriter and lead vocalist Chris Cornell who had taken his own life in 2017. It’s kind of a sad bluesy song and a great tribute to the late singer Cornell. The YouTube video I linked is probably one of the few legitimate videos I am linking. It is from a “Guitar Center” TV special on DirecTV posted by them.

By the way here’s an interesting YouTube video from one of my favorite channels called “12 Tone“. The guy who does the analysis draws little images as he’s narrating. He likes to draw little images of elephants for some reason but it’s an interesting animated way of describing his musical analysis. Check out the channel when you get a chance or specifically this video which analyzes Black Hole Sun. https://youtu.be/SOTRoZMAJ0s

Next on the list was a hard rocking number from FCA “I’ll Give You Money“. It’s not one of my favorite but I did recognize it from FCA and yet so upbeat after the slow blues numbers it was a good change of pace.

Between songs he told stories about how he wrote various songs. I don’t remember the details were when he told the stories between which songs. I do recall that two of his biggest hits were written when he went away to the Caribbean to write an album. He had three weeks to write it and spent the first two weeks partying with some other rockstar (I forget who) and he says he doesn’t remember much about those two weeks. But one of the songs he knocked out in one day during that third week was his hit number “Baby, I Love Your Way” which was next up on the setlist. The crowd sang along with him. It’s a very mellow easy flowing love song. I streamed about 2 minutes of it on Facebook for my friends.

He then told the story about an incident in 1980 when he was getting ready to tour Brazil. He thought he had lost all of his equipment in a cargo plane crash which tragically also killed three people. Among the losses were a treasured black Les Paul custom guitar that he was holding on the cover photo of “Frampton Comes Alive!” He had used it in his time with Humble Pie and throughout the early part of his solo career. He said then one day in 2011 he got an email with attached photos saying that the guitar had been found. It was returned to him. He said at the first performance after it had been returned, they put it on stage with a spotlight on it and it got a bigger round of applause then he did.

As he donned the guitar, I knew something big was coming so I quickly began recording on my iPhone. He shouted to the crowd “Are you ready?” And they replied with a loud “Yes”. He asked again louder “ARE YOU READY?” And they replied with a louder “YES!”

As I had hoped, the familiar opening guitar licks of “Do You Feel like We Do” radiated from the stage. It was my favorite cut from the original FCA album. The original version was the finale of that album and that version ran for over 14 minutes. It makes extensive use of the voicebox effects. It provides a brilliant exclamation point to the entire live album. It’s probably the track that I have played the most over the years. You can just feel the chemistry that he has with the audience in his live performance and for me it’s what makes the entire album so special. Literally for decades I have wondered what it would’ve been like to be there at that moment and hear that performance and feel the warmth and the excitement of such an amazing virtuoso performance. I wanted to know what it was like to “feel like you do” and now that long-held desire had become true for me.

In addition to brilliant guitar solos he also engages in musical battle with his keyboard player who is brilliant as well. There is back-and-forth interaction with the audience. The voicebox effects are brilliantly used. At one point he starts scatting into the voicebox and then says “I don’t know what I just said… mumbo-jumbo”. The audience went wild.

I took the opportunity while recording the song to turn around and pan the crowd because it interval part of the performance is the live audience. Unfortunately Carol missed part of it. About 10 minutes into it she let me know she was headed for the restroom. She return just as the song ended but she said that she could still hear all of it.

The entire extended performance lasted 18 minutes. That’s four minutes longer than the album version.

The online setlist says that the next song was “Four Day Creep” which is a song he did from his days with Humble Pie but was originally a blues song by Ida Cox. However the end of my recording of “Do You Feel like We Do” has the opening lines of “I Don’t Need No Doctor” which the online list says followed “Four Day Creep”. I think probably it was a medley of both songs. “I Don’t Need No Doctor” was also a big hit for Humble Pie but it was a cover originally recorded by Ray Charles. Whatever he played at the end in whatever order it was, it was just an afterthought compared to the amazing “Do You Feel…” number. There was no encore but really there was nothing else he could’ve done to add to what had just happened. The band left the stage at about 9 PM.

Intermission

I posted a note on Facebook saying that Frampton had done 18 minutes worth of “Do You Feel Like We Do” and that Steve Miller was up next. During the intermission I had Carol turn off the iPhone and unplug my control box. I had no way of knowing how much power was left in the battery for the control box but the iPhone was down to about 20%. If I was going to record or stream anything of Steve Miller it was going to have to be minimal.

Part of the strategy of this concert for me was the idea that if I was too tired to see the whole thing, all I really cared about was seeing Peter Frampton. If I had to leave and miss Steve Miller, I would be okay with that. As it turned out I was feeling good. The heat had been no problem at all. I kept drinking water and never was uncomfortable from the weather. There was a nice breeze blowing and overall it was a very pleasant evening. I spent most of the intermission just people watching.

The crowd was about 95% people in their 50s or older. The younger people there were obviously with a parent or who knows perhaps grandparent. Carol spotted one woman wearing an outlandish blouse that was barely containing her big breasts. She had a couple of younger people with her. Carol said “If I was there with my mom dressed like that, I wouldn’t want to be seen with her.” Other concerts I’ve been to in recent years with 70s or 80s groups like “Journey” or “Foreigner” have had more young people because those groups have continued to attract new audiences. These guys were definitely just for the nostalgic old folks like me.

During the intermission, the personalities from radio station Q-95 returned to the stage and gave away some free T-shirts celebrating their 40th anniversary. They also sent someone up into the lawn seating area and picked someone at random to come take a seat in the front row. That’s quite an upgrade. I paid over $100 for my seats and I guess that the front row is probably worth twice that. Seats in the lawn I think go for $20. They told the crowd that there were plans that Peter Frampton would be back on stage to play a couple of numbers with Steve Miller so the Frampton fans like me still had more to come.

The intermission lasted about a half an hour and Steve Miller took the stage about 9:30 PM.

The Space Cowboy Steve Miller

When the astronauts first landed on the moon in 1969, the very first thing that Neil Armstrong did after uttering his famous words about small steps was to reach down, pick up a rock, put it in a bag, and attach it to his suit. They called the “the contingency sample”. Each of the other astronauts who first set down on the moon did the same thing. The reason was “What if we spent billions of dollars to send a man to the moon, something happened shortly after he arrived, he had to get back into lunar module and leave immediately and would have nothing to show for it?” So the very first thing they did was grab a quick rock just so they could say that they didn’t come back empty-handed.

With my iPhone battery and my control box battery both running on fumes, I decided to record and share with Facebook friends about one minute of the opening song even though I didn’t recognize the song itself. It was my version of “the contingency sample”. Although I was completely satisfied by the Peter Frampton experience, I didn’t want to come away without any memories of the main act.

My knowledge of The Steve Miller Band repertoire is even more limited than my Peter Frampton knowledge so I’m relying heavily on this list from setlist.fm to fill in the gaps of my memory and basic knowledge. Again each song title below contains a link to a YouTube video of questionable copyright compliance. Details on particular numbers are also provided by the following Wikipedia articles on the band and Steve Miller himself.

https://en.wikipedia.org/wiki/Steve_Miller_Band

https://en.wikipedia.org/wiki/Steve_Miller_(musician)

It turns out that the opening song was a blues number called “The Stake” which was on the Greatest Hits Album that I had downloaded but originally appeared in their 1977 album “Book of Dreams“. You might recognize it more by the refrain “Nobody loves you like the way I do”.

The next number was also from 1977 “Book of Dreams” and “Greatest Hits” titled “Swingtown” again you might recognize and more from the opening line “Come on and dance, come on and dance…”. It’s a very upbeat pop song that was also released as a single in 1977.

The third song on the list was the first really big hit that I instantly recognized “Abracadabra” from the 1982 album of the same name. Since this was the first song I really recognized that they played I decided to record a little bit of it for myself… again as a bit of a contingency sample. Miller sounds exactly like he did on the original recordings. His voice sounds like that of a 25-year-old instead of a 74-year-old. He did hit a sour note occasionally or his voice cracked once or twice but 99% of the time it sounded exactly like every recording they ever did.

Miller dedicated the next song to US military serving around the world. “Living in the USA” was from their second album in 1968. At one point he explained that they had been recording and touring since 1968 thus making this their 50th year performing.

Next on the agenda was “Space Cowboy” from their third album 1969’s “Brave New World“. This is not to be confused with their hit song “The Joker” which begins with the lyrics “Some people call me the space cowboy.” I was completely unfamiliar with this song.

This was followed up with a much more familiar hit song “Take the Money and Run“. I figured it was worth the battery to capture two minutes of that with my iPhone for future memory. It sounded great.

As promised, they brought Peter Frampton back on stage for 2 numbers with Steve Miller. Miller explained that he admired Frampton’s guitar playing skills especially on blues numbers. They got to thinking about what they called the “Blues Triangle” of Memphis, Chicago, and Texas. They wanted to play some blues numbers representative of those areas. The first was a cover of a Freddie King song called “Same Old Blues“. Frampton did the lead vocals and Miller and the band accompanied him. It’s a very slow, mellow traditional blues song. The YouTube video that I have linked when you click on that song title above was recorded just three days prior to my event at their concert in Evansville Indiana. By the way, if I get arrested for sharing 2 minutes of video live on Facebook with friends only, I’m taking a bunch of people like this down with me. 🙂 They shared an entire song publicly on YouTube.

The other song with Frampton was “Stranger Blues” originally recorded by blues legend Elmore James. It’s a much more upbeat blues number with a traditional blues sound to it. Miller had included it in his 1993 album “Wide River”. He did the lead vocals that night and Frampton accompanied. Even though I was unfamiliar with either song, they were great examples of classic blues and I enjoyed them a lot.

Next came a lively little country number called “Dance, Dance, Dance” from the 1976 album “Fly like an Eagle“.

Next up is “I Want to Make the World Turn Around” from their 1986 album “Living in the 20th Century“. I was completely unfamiliar with it.

Before playing the next song “Wild Mountain Honey“, Miller explained that it was from the early part of the 1960s which he described as the swinging 60s not that hippie 60s. But if there was ever a “hippie-like” song in his repertoire it would have to be this one. He told the story of the strange guitar he uses to play it. It has six control knobs instead of the usual three. It has three electric pickups shaped like lipstick tubes. And it has 19 strings. In addition to the usual six strings there is another section that is like a miniature harp. It has a purple fake alligator skin cover. The YouTube video linked in the song title is from a 2017 concert where he tells the same story. At our concert he did the same gimmick where he reflects the spotlight off the mirrored back of the guitar. Although I’m pretty sure he described the price of the guitar as $125 and other Internet sources have listed it as $125, this video says he paid $200 for it. The guitar is a combination electric guitar and electric sitar. It sounds like something George Harrison would’ve played during his Ravi Shankar period. Tell me it doesn’t sound like a hippie song.

Miller explained that at the start of their career they released five albums in 19 months! They ran out of titles so they just called the fifth album “Number 5“. They played a lively blues number from that album titled “Going to Mexico“.

Finally we had one of the major hits we had all been waiting to hear. The 13th song on the agenda was their 1973 hit “The Joker” from the album of the same name. I had to share this one on Facebook for a couple of minutes. It contains the famous line in the chorus “I’m a joker, a smoker, a midnight toker…”. Apparently someone about two or three rows behind me took that opportunity to light one up. A security guard walking by in front of me pointed his flashlight in their face and yelled at them repeatedly “Put it out”. You can hear the security guard in my video. I had expected to smell lots of smoke during the evening but I never did smell any. Carol said that she did. Of course the crowd went crazy over the song and I really enjoyed it too.

They followed this with a lively number “Serenade” from the 1976 album “Fly Like an Eagle”.

Speaking of which… “Fly Like an Eagle” was the next song. Somehow I anticipated that it was coming and managed to get a recording going on the iPhone missing only a couple of bars of the introduction. It was a phenomenal eight minute long version of their greatest hit song ever. It included a brilliant keyboard solo that I especially liked. The crowd was clapping and cheering throughout the entire song. Just as the song was ending and I was trying to click on the phone to stop the recording and everything went blank. My battery had died completely. I had no idea if that last song actually got recorded or was lost forever.

For a grand finale they immediately went into another major hit “Rock’n Me” from the 1976 album “Fly Like an Eagle”. They left the stage to thunderous applause and screams but returned quickly for an encore consisting of “Jungle Love” followed by “Jet Airliner” both from the 1977 album “Book of Dreams”.

During this final song they lowered down a giant disco ball from overhead at the center of the stage. Both Frampton’s and Miller’s shows were very short on special lighting effects. Neither of them had any pyrotechnics, lasers, or video screens. They did occasionally project a still image on the backdrop but this concert was more about music and not about fancy theatrical show.

The song was written in 1973 by Paul Pena but is recording was not released until 2000 because of a contract dispute. Steve Miller’s version is the only one most people know from the 1977 “Book of Dreams”. It’s a jumping rock ‘n’ roll song so it seemed really strange to have a disco ball suddenly appear during it. It did get everyone (including my sister Carol) up on their feet and dancing. She should be glad my battery had run down or I would’ve had video of that as well.

The Journey Home

The show ended and the lights came up. It was a little bit after 11 PM. I took one last drink of my bottled water. We put on my head strap and I drove out through the crowd. There’s always a big backup on the footbridge as everyone tries to leave at once but this time it wasn’t too bad. When we got to the car, no one was parked next to us so it was easy to load up. We didn’t spend too much time fighting the traffic to get out. Of course this wasn’t a big sellout so the crowd wasn’t that enormous.

Unfortunately they forced us to turn north on Bowden Road which was the opposite of where we wanted to go. With my iPhone battery exhausted we had to navigate our way around without the help of GPS or Google maps. Carol has all of that on her iPhone but she couldn’t operate it and drive at the same time. We turned east on 156th St. which is a dark two-lane road. We managed to zigzag South and East on other streets as soon as we could and ended up on 146th St. which is a four lane road. We then took the same route back home that we had taken going in. At that time of night of course there was no traffic.

On the way home we passed by St. Gabriel again just a few minutes after midnight. The festival was just shutting down for the night but there were still plenty of people there. When I got home I did a quick G-tube feeding and went to bed. I was in bed by about 12:30. Carol decided to stay the night rather than drive home late at night to Danville.

The next morning I discovered all the problems with my remote control box and as I explained earlier, I spent all day Saturday trying to recover it. When I finally got everything working, the first thing I did was try to see if my recording of “Fly Like an Eagle” had survived. Unfortunately I could not find it on the phone. I got on iCloud and began downloading the photos and videos on my computer. I only had the basic 5 GB free iCloud because I don’t use it much. After had downloaded everything and deleted it from the cloud and my phone, suddenly a new video appeared. It was the complete recording of the missing “Fly Like an Eagle”! Even if my iCloud account had been overflowing, I should have still been able to see the file on the iPhone directly but for some reason it did not appear until after I had cleaned out iCloud. My memories recorded from that evening are now complete.

It’s taken me over 2 days to research and write this blog. I titled it “Frampton Comes Alive Again, And so Did I” because it’s kind of a rebirth for me to be able to go to evening concerts like this the way like I used to. I missed a lot of good shows over the last couple of months. I had considered trying to get tickets for another show this summer. Steely Dan and The Doobie Brothers will be there this coming Sunday, June 24 but that’s too soon for me. I’m still recovering. Styx and Joan Jett will be here July 11 the day before my birthday but the weather will probably be very hot and I’ve seen Joan Jett just a few years ago. Foreigner will be here July 12 my birthday but I’ve also seen them a few years ago. Chicago and REO Speedwagon will be here in August but again the hot weather might be rough. I’m sure I will find something good to see. Perhaps something indoors will become available so I don’t have to worry about the weather. Also I can be home from Bankers Life Fieldhouse in a half hour rather than the hour trip to Deer Creek.

It did occur to me that by the time another good concert comes along that I might not be in as good of shape as I am now. If this turns out to be the last concert I ever attend, it certainly was a memorable one and would be adequately worthy to hold that distinction as my last.

Christmas Gifts — Holiday Hospital Part 8

This is the eighth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Big Surprise

In my previous installment I talked about going to a Christmas ceremony on December 23 but there were other things that happened that day that we ought to cover. I had a bit of a rough night so I tried to nap as much as I could in the morning. I spent some time finishing up the second installment of my blog about being in the ICU. Here was my early morning Facebook post. [12/23/2016 7:16 AM ]

I’m not sure whether it was by email or by a Facebook post that I got some amazing news. The FDA had approved a drug called Spinraza for the treatment of Spinal Muscular Atrophy which is the genetic neuromuscular disease that I have. SMA comes in about four different varieties. I have type 2 which is very early onset but only weakens you very gradually over your lifetime. Living into your 60s like I had was not unheard of but I was probably pushing the limits. However the more severe type 1 weakens the children very severely at birth and they are fortunate if they managed to live more than two years. In a clinical trial, this drug was so effective in not only stopping the disease may in many cases increasing the strength of patients, that they stopped giving the placebo to part of the participants. Given that this was a seriously fatal disease and they had already seen positive results, it would’ve been immoral to deny the treatment to the other participants.

Although the clinical trials only involved the extreme type 1 infants, the FDA had taken the unusual step of approving it for all varieties of SMA and all ages of patients. This was a treatment and not a really cure. Early results showed it to be effective in only about 40% of the patients. Later that number increased to around 50%. I had known for years that if they ever did come up with a treatment, it wasn’t what to do me any good. Over 60 years of the disease had done damage that cannot be reversed. For a variety of reasons I won’t go into here, I’ve not pursued the treatment. The major reason is that is unproven for older type 2 patients at highly unlikely to do me any good. The side effects of the treatment are not well known. It involves a spinal injection and with my severe scoliosis that would be either dangerous or impossible.

Still it was an amazing piece of news and a wonderful Christmas present. I put together the following blog item telling a long story about my relationship with SMA and a funny story about one of my former employers who was a geneticist who is a bit of an ass.

I’ve Got That One. It’s called SMA Type II. And now it finally matters!

Christmas Eve

For Christmas Eve I expected it to be an uneventful day. Dad was going to come and we were going to watch the Colts game. I had told Carol not to bring her grandkids to the hospital to see me because I knew they would be bored and rowdy. I had decided to take it easy and not get into the wheelchair today. Here was my early morning Facebook post.
[12/24/2016 9:45 AM ]

Fortunately nobody listened to me when I said don’t come and don’t bring the kids. Carol showed up with her daughter Alaina and grandkids Leighton and Keeleigh. Carol brought me a Christmas present that I have asked for. It kind of started out as a joke but actually it turned out to be a good idea for present. I had said “What do you get a guy for Christmas who has a trach? Of course the answer is scarves!” She got me a Colts and a Pacers scarf. There was a promise eventually we would get one for the Indy Fuel hockey team which we did eventually get. Here’s the live Facebook video of their visit at 2:13 PM.

Alaina and her kids did not stay long because as I predicted, they got a little bit rowdy. To my surprise, before Carol and the kids left, Karen and her boy Cole showed up for a visit as well. Here is the Facebook live video from 3:14 PM

My nephew Cole is a huge Chicago Cubs fan. When the Cubs won the World Series I built a special electronic hat for him. It has a strip of NeoPixels across the brim as well as a group of pixels underneath a 3D printed “C” for Cubs in the front. It runs off of an Adafruit Feather 32u4 BLE with a LiPo battery. You can control the pattern of lights using an app on your phone or tablet. Dad had brought it and left it in the car just in case we happen to see them. Unfortunately I could not demonstrate it because we ran down the battery playing with it. Here’s a video demonstration that I gave several weeks earlier on the Adafruit “Show-And-Tell”. My segment starts at about 5:35 into the video.

It turned out that the Colts lost their game and were eliminated from the possibility of making the playoffs. I spent the rest of the day working on a blog post about my Christmas card. If I wasn’t going to be able to mail out the Christmas cards, at least I could write about it and share the image with everyone on Facebook. I took time out to call my friend Judy and wish her Merry Christmas. Here was my final Facebook post of the day.
[12/24/2016 8:12 PM ]

Christmas Day

Christmas morning I put the final touches on my blog about my Christmas card. Usually I make a CGI rendered image using POV-Ray rendering software but this year for a change I took one of my old CGI designs, 3D printed it, and took a photo of it. Here is a blog post from my graphics blog with the details.

My 2016 Christmas Card: Reimagining a CGI image by photographing 3D printed models

I connected with my sister Carol via Skype and got to watch her kids and grandkids open Christmas presents that morning. I had hoped to do the same with Karen but we never were able to get together on that. I had a surprise visit from my friend Judy and from Fr. Paul. I had no idea they were coming so it was fun to spend time with them. I spent the rest of the day working on another installment of my blog about my time in the ICU. My only Facebook post other than the blog posts was the following note.
[12/25/2016 5:00 PM ]

In the end it was a much better Christmas than I expected it to be. I got to see all of the family that I usually see on Christmas plus visit from friends that I did not expect.

After Christmas

Because it was the holidays, they were still very shortstaffed. With Christmas falling on Sunday, people were considering Monday the holiday. Even the cafeteria downstairs was shut down. I was able to get up in my chair for over five hours. I got a visit from my friends Stu and Pat Byram which was fun.

While I was up in my chair, my throat got quite dry and my lungs got a bit congested. Dad was supposed to be learning how to do a trach suctioning but I had been doing so well that I didn’t really need one. He had done a couple of practices when there was nothing in my lungs to suck out. So when I got gunked up that day, Dad did his very first trach suctioning under “real world” circumstances where I really needed it. We did okay even though it maybe wasn’t the best one I ever had.

I had a talk with the nurse practitioner about taking me off some of the medication that they had put me on. I don’t recall what sort of extra meds I had been on but I didn’t really think I needed them anymore. We talked it over and she cleared it with the doctor and we cut me back to just my usual medication.

One of the meds I had been on for many years was Flomax which is supposed to help with prostate issues and to help you pee better. The warnings on that drug said do not crush it or chew it. It is a capsule that is only about half full of some sort of gritty powder. For months (perhaps years) I had been taking it by mouth and letting the capsule partially dissolve until I could smash it flat and swallow it. Many times the contents would come out into my mouth. Fortunately it did not taste bad so I had no trouble taking it by mouth. However under my new circumstances I wasn’t taking anything by mouth except plain water. So they had discontinued the Flomax and put me on something similar that was safe to grind up and put through the G-tube. With this exception everything else on my meds were back to normal. It turns out that substitute prostate medicine has continued to work well to this day. I’m not had a urinary infection in two years.

I managed to write another blog post about being in the ICU. I was really looking forward to Tuesday because that was the day that the respiratory therapist was going to bring in my new ventilator and to train my dad and Carol how to use it. Dad would then stay overnight Tuesday night to prove to everyone that he was capable of taking care of me. It was a ridiculous requirement but it was the only way they were going to let me out of the place. Theoretically I could be going home by Wednesday the 28th. Here are the two Facebook posts I made that day. [12/26/2016 6:58 AM ] [12/26/2016 6:14 PM ]