Over the past couple of days I have watched every minute of the historic flight of American astronauts to the International Space Station aboard a SpaceX Falcon 9 rocket and a Crew Dragon capsule. After nearly 10 years of having to send our astronauts into space aboard Russian rockets, we finally have the capability to launch Americans from American soil on an American rocket. I could not be happier about the entire situation. The top photo above shows our three American astronauts aboard the International Space Station along with their two Russian cosmonaut crewmates after the successful docking of the Crew Dragon Demo-2 capsule.
I grew up during the space race of the 1960s. I remember watching Alan Shepard aboard Freedom 7 flying a suborbital mission on May 5, 1961. I watched it on TV in my kindergarten class while my classmates complained that “Captain Kangaroo” had been preempted. I tried to explain to them “Don’t you get it? This guy is going to be the first American to ride a rocket into outer space! That’s much cooler than Captain Kangaroo!”
I watched on TV every minute of every launch throughout the Mercury, Gemini, and Apollo programs as well as many space shuttle launches. I built models of Mercury, Gemini, And Apollo capsules and rockets as a kid. It is rare that I miss coverage of any current SpaceX launches. I’m a huge fan of Elon Musk the billionaire entrepreneur engineer genius founder of SpaceX and Tesla. I visit multiple YouTube channels to follow the daily progress of the construction and testing of his new Starship rocket which will someday take astronauts to the moon and eventually to Mars. Every man or woman who is ever been to outer space is one of my heroes. I admire them and the teams are dedicated people who put them there.
To put it succinctly… I’m a space fan.
However I am disturbed by some of the questions that have been posed to the astronauts, NASA officials, and Elon Musk about the “inspirational value” of this most recent achievement. Now don’t get me wrong, I’ve been inspired by the entire space program and I am inspired by what Musk and company have accomplished. It’s a great achievement. But the questions being posed go something like “Given all the turmoil we have in the world today regarding the pandemic and the violence in the streets don’t you think that this accomplishment shows what people can do when they work together?”
The question is often placed in the context of what the US space program did for us in the late 1960s. Set your “Way Back Machine” to 1968. We were at the height of the Vietnam War. There were protests in the streets over the war. There were riots outside the Democratic National Convention in Chicago and other places. Presidential candidate Robert F Kennedy and civil rights leader Dr. Martin Luther King Jr. were assassinated. The country… the world… needed inspiration and hope.
In some small measure, the accomplishments of American astronauts provided that healing sense of hope. It began on Christmas Eve, December 24, 1968, in the most watched television broadcast at the time, the crew of Apollo 8 gave a solemn and inspiring reading from the Book of Genesis as they orbited the Moon. It culminated with the landing of Apollo 11 on the moon on July 20, 1969. I remember every detail of those events as I watched them unfold on TV.
Among the things that gave us perspective on our lives and our planet was a photograph taken by Apollo 8 that has come to be known as “Earthrise“. It showed our tiny blue planet rising over the moon as seen by the crew of Apollo 8. See the image at the top of this blog. (credit to NASA) It was not only an inspiring image but it was one that truly gave us a different perspective. Lots of inspiring events claim to “change our perspective” but this was literally a prospective that had never been witnessed by human beings before… the image of our planet as seen from farther away than any human being had ever traveled.
Nothing can completely heal the wounds of the turmoil we experienced in the 1960s. The 1970s with the continuation of the Vietnam War and our own subsequent abandonment of it as well as the damage to our faith in government brought on by the Watergate scandal continue to haunt us to this day. But the events of the Apollo program, while not curing us of our social and political turmoil, did provide an important and significant reminder that the human race is one race and we share this planet together. It’s the only one we’ve got.
Elon Musk is concerned about the fact that it’s the only planet we have. His primary motivation for getting us to Mars is so that we will not be a single planet species. He idealistically believes that the human race can only be saved if we have another home besides Earth. Agree or disagree. He’s a man with a vision.
While the accomplishments of the Dragon Demo 2 mission are an important step to our future exploration and commercialization of space travel, they just don’t have the power to heal us or inspire us in the same way that Apollo did. Our perspective today is no different than it was a week ago.
Let’s be brutally honest about what really happened here. Let’s answer the question much less diplomatically than the astronauts, NASA officials, or Elon Musk have been when answering the question “Can this mission inspire us out of our current turmoil?”
The answer is no. Mostly because this isn’t 1968. Things are much different.
In the 1960s we believed that the Soviet Union was an existential threat to our country and to democracy around the world. Our need to demonstrate our superiority over them was more than just bragging rights. The potential militarization of outer space was a clear danger. Our need to exhibit our mastery of space travel was an important element of the Cold War.
The quest to land human beings on the moon was initiated by John F. Kennedy and sustained by his successor Lyndon Johnson. In a famous address, Kennedy explained that we go to the moon “not because it’s easy but because it’s hard”. An underlying justification for the race to the moon was to be an inspiration and a demonstration of our capabilities as a country. Furthermore the Kennedy and Johnson administrations were both dedicated to and in a large part responsible for civil rights reforms in the 1960s. They were administrations who were actively trying to transform our country into one in which the phrase “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” were not just words on an ancient piece of parchment. Those words are among our founding principles to which we must continually strive to make a reality.
But we don’t live in 1968. Elon Musk is not JFK. Elon Musk is a businessman who intends to turn a profit. Although his underlying justification for being in rocket business is to “save the human race from being a single planet species” that comes across as ridiculous hyperbole to most people. We don’t live in 1968 and Lord knows Donald Trump isn’t LBJ. The accomplishments of Crew Demo-2 do not represent a giant leap forward in space exploration. Instead it’s a long overdue fix to a problem that should’ve been solved (and could’ve been solved) 10 years ago if we had had this program in place prior to the retirement of the space shuttle. It doesn’t change our perspective of the earth or of the capability of human accomplishments. Although it represents a new way of doing things in space it doesn’t really break new ground.
Let’s be even more brutally honest. Does Crew Demo-2 provide us with “hope of what can happen if we all work together?” I’m an old white guy who loves everything space related but I am offended by that question in that context.
Let’s rephrase it… “Does the event of 2 college educated, military trained, white guys flying aboard a rocket built by a billionaire white guy who made his billions in the dot-com boom and selling luxury cars give the average young black man hope that he will NOT be murdered in cold blood by a racist police officer with more than a dozen previous complaints against him? Do these SpaceX and NASA employees with high paying government jobs that have continued to work throughout the pandemic give hope to the average middle-class American who is unemployed (along with 20% of all Americans), or to those employed in a job that potentially exposes them to a deadly virus?”
Yesterday I went to Eli Lilly’s drive up COVID-19 testing facility to get checked for the virus. I’m going to tell you about that experience and then I will tell you why I think we are in deep trouble.
My Testing Experience
It all started on April 17, 2020 when I learned that one of my home health aides had been exposed to the Corona Virus. That same day I developed a fever of 101.2°. Although I was able to get it under control with Tylenol easily, I decided to call my doctor on April 20. He prescribed a Z-Pak antibiotic and told me that if I got worse or cannot control the fever to go to the ER.
The next day I was informed that the aide who had been exposed to the virus had tested positive. I called my doctor back again to tell him I was still doing well but the test on my aide had come back positive. After brief discussion we decided I should go to the Eli Lilly drive-up testing facility. The problem was… I was stuck in bed. One of my other aides having learned that I have a fever and had been exposed to someone who had tested positive, decided not to come back to work with me. I can’t really blame her. These home health aides only make about $11 per hour and she has children and a family to consider.
I didn’t want to try to schedule the test until I was certain I had someone to get me out of bed. I finally got a replacement aide on April 24. She did so wearing full PPE consisting of a mask, gloves, and a paper over garment. After I got up I called to schedule my testing appointment.
The registration process included emailing them the written orders I had from my doctor. their requirements are that you be a first responder such as police or fire, be a healthcare professional, or be symptomatic over 65, or be symptomatic and be at risk for other health conditions. With my disability, limited lung capacity, and a variety of other medical issues I fit into the last category. There was only one catch… By the time we got thing scheduled, my fever had subsided. Technically I was no longer symptomatic but I didn’t tell them that. I told them that I was at risk which was true. I told them I had recently been exposed to a healthcare worker who had tested positive which was true. And I had my written doctor’s orders.
After going through the registration process, they assigned me a time of 10:15 AM the next day Saturday, April 25. Unfortunately my home health aide usually arrives at 9 AM and it takes at minimum 90 minutes to get me up and dressed but considering she was new it was going to take at least two hours. There’s no way I could be there at 10:15 AM. The only option was to call back later in hopes of getting a later time. They could only assigned you the next available appointment. You could not pick a later time.
I called back a few hours later and managed to get an appointment for 11:30 AM. It turns out my aide was going to be coming a little bit early and we would be able to meet that time. This was a Saturday and they were only going to be open until 1 PM. They would be closed Sunday so if I waited much longer I would be getting a Monday appointment and it would likely be early morning. So I took what I could get.
Saturday morning I got up and we drove down to S. East St. at about the 900 block. The line of cars waiting to get into the facility was more than 2 city blocks long. We were going north on East Street and had to go down and go around the block to get headed southbound and get in the line. By the time we did that, the line was even longer. We ended up making a U-turn in the middle of East Street which was otherwise pretty much deserted. We arrived in the line at about 11:25 AM five minutes prior to my scheduled appointment.
The line was barely moving but it did move. The first check-in station on East Street about a block away from the entrance to Eli Lilly had people standing there in orange vests. They would hold up a sign with a phone number so that you could talk to them without rolling down your window. Signs everywhere warned you “Stay in your car. Keep your windows up”. We had been warned we had to have a fully charged cell phone available.
Apparently in addition to the testing, there was also sign up for something else and I think she said it was a clinical trial of some kind. Depending on what kind of testing you were getting or whether you were signing up for this “something else” you would get a different colored ribbon of crêpe paper tied onto your side view mirror.
My biggest concern about this entire process was that from what I had seen on TV, you would pull up to this drive-up testing, you would roll down your window, and they would swab your nose through the window. Of course I would be sitting in the back of my van with Barb driving and there was no way I could lean out a window. I was fully prepared to raise a big stink if they refused to test me. Barb kept trying to calm me down about that. At the first check-in station on East Street we told them that I was the patient in the back of the van and that we could open the doors and let them into test me but I couldn’t get my head out the window. The rear windows on the van don’t open. The girl we were talking to over the cell phone called over her supervisor and the supervisor called ahead. After a brief minute she seemed they would work something out.
Eventually we made our way to the entrance and turned off of East Street into the Eli Lilly campus. The lawns were perfectly manicured. There were lots of trees and the dogwood trees were in full bloom. It’s a gorgeous looking place. We went another hundred yards or so and then the people directing traffic started letting the pink ribbon people cut the line. We had a green ribbon. Apparently the pink ribbon line was moving faster.
The line eventually turned into a parking garage beneath the facility. We turned left and the pink ribbon people went straight. The cars would pull up in 2 lines with 4 stations on each line. Again they would hold up a sign giving you a cell phone number and you would call it to speak to a person sitting at a table with a laptop computer. They asked us a confirmation number that we had printed from the confirmation email. With that number they knew my name and confirmed address date of birth etc. to make sure it was really me. They then put together a plastic bag with my testing supplies in it and my name written on the bag. A guy placed it behind our windshield wiper and we drove on to the final station.
Up until now, people were wearing regular street clothes or perhaps an orange vest. I think some of them were probably wearing masks. But at the final testing stage the workers were in full hazmat suits. They looks a little bit like those Tyvek paper suits but I’m pretty sure it was head to toe. Their head was completely covered and it was a hose coming out of the top of the helmet. We explained to them again that I was in the back and I was the one who needed to be tested. We opened up the side doors and let down the wheelchair lift. The woman doing the testing climbed in the van and stuck a long swab up both of my nostrils. I couldn’t turn my head so she had a little trouble getting the left one but we got it done. They gave us some paperwork including a code number that we will use to get my results from their website. It was now about 12:30 PM so it took about an hour in line.
Overall it looks to me to be a very smoothly run, well designed, efficient process. I think if they hadn’t had more than one kind of thing going on at the same time, the wait time would have been shorter but I can’t say that for sure. Even though it was a bit frustrating at times, looking back I can’t see how it could’ve been run any better.
Why We Are in Trouble
Even though my experience went relatively smoothly, I have to think about all of the things that could’ve gone wrong.
First of all… What if I hadn’t found an aide who could get me out of bed? What if I was completely bedridden? I had discussed this possibility with my doctor when we first talked about doing the drive through testing. My only option would have been to call an ambulance and have them transport me to St. Vincent ER to be tested. That would’ve exposed me to an ambulance gurney, a pair of EMTs, and the environment of emergency room and the workers and their. While we would hope that all of those would be safe and sanitary, the truth is we’ve had hundreds of such people catch the virus and sadly many have died. There is a strong possibility I do not have the virus. If I did, my doctor and I both believe I would be sicker than I am. But if I couldn’t get out of bed to get tested, the process of getting me tested would’ve exposed me to not only COVID-19 but who knows what other diseases? Not to mention the expense of 2 ambulance rides and an ER visit. I’ve already discovered the only way to get Medicaid to pay for an ambulance trip is to call 911 and tell them it’s not an emergency. To schedule a routine doctor visit for example and be transported by ambulance you have to schedule 2 days in advance and you need confirmation from the doctor that you absolutely have to be seen in person and that you have no other means of transportation.
I was in a kind of Catch 22. It was going to be hard to get an aide to come take care of me when my virus status was unknown. However I couldn’t get tested unless an aide would come get me up. The bottom-line is we need a system of visiting nurses or doctors who can test at risk people in their homes.
While Barb thinks my fears that they would not have tested me in my van were overblown, and in fact we had no problems with that issue, it could’ve very easily turned out differently. People are living by very strict rules these days. At least the responsible people are. They might’ve had a rule that said under no circumstances could one of the test personnel enter a patient’s vehicle to perform the test. As unfortunate as that would be for me and as insulted as I would be, I sort of understand why they might have that kind of rule.
If you have watched the news lately, there was a feature with a woman who had a disabled daughter. They wanted to take advantage of the bicycle and hiking trails at Eagle Creek Park. But the parks department has closed the park to all but pedestrian traffic. She wanted to drive in to the grounds to unload her daughter in her wheelchair so that they could go hiking. The park refused to make an exception and suggested she could drop off her 10-year-old daughter at the gate, go park somewhere else, and then catch up with her. Yeah… Like you’re going to leave your 10-year-old child unattended at the entrance of a public park. Do that and you could get arrested for child endangerment. Even after the TV station contacted the parks department, they refused to budge. That kind of inflexibility and accommodation for people with disabilities is quite common. And to be honest while the park situation was ridiculous, I could understand why people might want to refused to enter a vehicle to test the patient. The bottom line here is we need assurances that tests are accessible to people with special needs even if they can get out into the world. Although this went well, it doesn’t take any imagination to think it could’ve gone badly. Trust me on this.
I have to ask, what if I had been honest and told them my fever was over? I would’ve been completely ineligible for this test. As it turned out, later that day after I got home from the test, my fever did return slightly up to 99.1°. While that doesn’t seem like much, my normal temperature is about 97.8°. The Tylenol took care of it easily but at the time I was taking the test, I had been completely symptom-free for more than three days. What do you do when you know you are at serious risk, at risk of infecting others, have been exposed to someone who is positive? What do you do? If my fever had gone up the day before instead of the day of would’ve been clearly eligible and not had to stretch the rules of the system. Depending on when that fever actually returned I might have really had the fever sitting there in line and getting tested.
I did a Google search asking where else I might be able to get tested. Here is the link to the search I did. In addition to the Eli Lilly facility several hospitals are doing testing. The VA hospital is for veterans only and only if they are symptomatic. Ascension St. Vincent has basically the same rules as Eli Lilly. You have to be first responder, healthcare worker, at risk and above all symptomatic. Community Hospital doesn’t say what their criteria are. They just say to call for a virtual doctor visit and then they will advise you what to do.St. Francis hospital system says that depending on their available supplies, the rules on who can be tested might change daily. Basically they are saying they are rationing supplies for testing. It’s obvious that the other testing centers are limiting testing to certain priority groups because of the lack of supplies. A couple weeks ago when Trump said “Anyone who wants a test can get it” we all knew it wasn’t true. What I’ve seen here in Indianapolis proves that. Of course public officials such as Trump and his cohorts have all been tested for the virus even though they are completely asymptomatic. Whose life could’ve been saved by that test they did on the tigers in the zoo?
So the bottom-line is… The only thing you can do if you are asymptomatic and have been clearly exposed to someone like I was, is to completely self isolate. That means if you’re one of the people who is lucky enough to still have a job you have to quit. God knows what kind of process you would have to go through to keep from getting fired for not going in. And then you would have to prove that your unemployment was COVID-19 related. What would a single parent without a support network of family or friends do under such circumstances? Abandon her children to CPS? What if you are responsible for caring for an elderly family member? Does that make you a “healthcare professional”? If not, your choice would be to put your elderly relative into a nursing facility which would probably be more risky than you taking care of them yourself. Of course when they catch the virus from you, you get to blame yourself rather than blaming the nursing facility. None of these options are fun.
Under the current circumstances, testing supplies are in such short supply that they have to be rationed and prioritized in this particular way. I don’t deny that. The people who are getting priority for testing deserve the priority. And it was only a difference of a day and a degree of fever that I sort of stretched the system to get my test.
We are told that in order to safely open up our economy we need MASSIVE amount of testing and contact tracing. The truth is my home care agency and I have done our own contact tracing. If I come back positive, I will be the one contacting everyone I’ve been in touch with over the past few weeks to let them know of my status. None of the people that I will tell about my positive test will qualify to be tested until they become symptomatic. At which point God knows how many other people they have infected. Are they supposed to self isolate on the off chance I might have passed it to them? Are they going to shut down what is left of their life for 2 weeks just because they can’t get peace of mind that they are negative?
I don’t know how it is around the country, but Indianapolis was mentioned by the US Surgeon General a few weeks ago as an emerging hotspot. With the limited capacity we have for testing right now, we are NOWHERE NEAR READY TO REOPEN.
I witnessed an amazingly efficient and well-run testing program. And it is totally inadequate to meet our needs.
In December 2016 I spent a month in the hospital with respiratory problems and getting a trach. The first half of the story was chronicled in a series titled “Pray That They Listen to the Man with No Voice” about my time in St. Vincent ICU. The second part title “Holiday Hospital” is about the rest of December including Christmas in St. Vincent Seton Specialty Hospital. I recently was going to share the story with a friend and realized that I had not yet completed the Holiday Hospital series. It’s been over three years since the events happened but I never did complete the story. So I will try once again to finish it up. This is part 10 in the “Holiday Hospital” series. Here is an index to all of the entries in this series.
In the previous installment of this story I told about the test that my dad had to pass by spending the night in the hospital with me and proving that he could handle my ventilator and trach issues. It had been a really rough night and neither of us had gotten much sleep but we had passed the test despite some minor mistakes. Theoretically all that had to happen was for the doctors or nurse practitioners to sign some forms and we would be on our way home. The respiratory therapist was planning on meeting us at my house to bring a bunch of supplies. We already had the new ventilator and will be taking it home with us.
Checking out of a hospital always takes longer than you think it should. You are anxious to get home and bureaucracy always moves at a snail’s pace. Over the years I’ve learned you just have to be patient and let the system go on its own pace. Here is a Facebook post I made at 6:50 a.m. Just as a reminder anytime you see this little Facebook icon is a link to a Facebook post related to when I’m talking about. [12/28/2016 6:50 AM]
Dad got me up and dressed and we began packing up a bunch of my stuff and hauling it out to the van. Unfortunately we hit a major snag. In theory my trach should be replaced once a month. For the first replacement it should be done by a doctor who would train my dad how to do subsequent replacements. We are describing events of December 28 and I had had the trach since December 7 so the soonest I would’ve really needed a replacement would’ve been January 7. But for some reason the powers that be decided they would not let me out of the hospital until I had a definitive appointment to change the trach.
I tried to convince them that it was not an immediate need. If they were so concerned about getting the trach changed why didn’t they just go ahead and change it right now if that was a prerequisite for me getting out. They didn’t really have anyone who was willing to do that. As I mentioned in previous installments there was really only one doctor covering the entire facility. Everything else was run by nurse practitioners and therapists and the doctor wasn’t available at the time.
They were trying to get in touch with my regular ENT doctor but he was on vacation over the holidays. The receptionist who booked his appointments didn’t know if he would even do that kind of thing in the office. Here is a Facebook video that I shot at 11:43 AM that shows me up and dressed and ready to go and basically telling the same story I just told in the past couple of paragraphs. In the video I said that I had had the trach installed on December 9 but it was actually December 7.
I impatiently roamed the halls almost all afternoon occasionally arguing with the case manager Michelle trying to get her to sign off on releasing me without getting the trach change nailed down. I even bribed her with a little 3D printed Christmas tree ornament which she really liked but it didn’t move things along any faster. [12/28/2016 2:02 PM]
While I was killing time waiting on my release from prison I managed to strike up conversations with some of the other staff. There were respiratory therapists and nurses just standing around the hallway in between doing whatever needed to be done. So I had some nice conversations with them. One of the people who I had seen every day was a woman who would sweep the rooms and emptied the wastebaskets. She was obviously a Muslim because she always wore a hijab headdress. I often wondered what it was like for her to work in a place where there were perhaps no other Muslims and everyone was going around wishing one another Merry Christmas. On several occasions, especially this one, I thought about saying to her “as-salamu alaykum” which is a tradition Islamic greeting that translates to “peace be upon you”. But I really didn’t know how it would be received and I don’t know any other Arabic phrases or words and I didn’t want to have her think I could actually speak Arabic.
A few months later I would have a respite nurse named Mohammed Tahir who became a good friend. We frequently had long discussions about religion. He was very curious about other faiths and had studied them on his own. I would answer his questions about Catholic Christianity and he would answer my questions about Islam. If I had had my experience with him I would’ve been much more open to reaching this woman with the Arabic greeting.
It Fell off a Truck
Among the things that they do for you as you are leaving the hospital is make sure that you have all of your necessary prescriptions. Just about everything that I was taking except for the new prostate medicine was stuff that I was already taking before going into the hospital. And if I missed a day or two of the prostate drug it wasn’t going to be any big deal. The one thing I was worried about was albuterol. It is a liquid that you put into your nebulizer to help clear your lungs. It comes a little plastic ampoules where you twist off the top and pour it into the nebulizer. I was concerned that I might need a breathing treatment before dad could get to the pharmacy and get that prescription filled. So we talked to one of the respiratory therapists and she was able to slip us a couple of ampoules of the medicine to take home with us. We said to her “I wonder where this came from? We just found it lying here.” She said “Maybe it fell off a truck and you found it.” We had a big laugh. Little did we know that filling that prescription was going to be more difficult than we anticipated so it was a good thing she got us a few free samples.
Free at Last
I don’t know what time we finally got out of the hospital but my notes say that we didn’t get home until 5 PM. We still had to meet the respiratory therapist at my house so that he could deliver the supplies. They arranged to get me a tentative appointment with my ENT doctor sometime in early January to change the trach. Unfortunately it was something like 8 AM which there was no way I was going to be there that early. A few days later I called to reschedule it at a more convenient time and we didn’t actually change it until January 12. And guess what… the world did not come to an end and I did not die because my trach was changed a few days later than scheduled. But I had wasted the entire day until they made arrangements for no good reason whatsoever.
As we were going out the door escorted by the case manager Michelle, she acted as though she had achieved some sort of victory. She had told us that it would take 2 weeks to get the ventilator arranged and I was being released from the hospital almost exactly 2 weeks after I entered. I explained to her that first of all there was no reason on earth the process should’ve taken that long. Also we had been trying to arrange the ventilator for five or six days back when I was still at St. Vincent before ever got to her facility. And that time had been completely wasted. Essentially we had to start from scratch when we moved to the new hospital. Furthermore there was absolutely no medical reason why I had to be in the hospital that long except for the bureaucracy of obtaining the ventilator and there was no reason that she needed to keep me in the hospital all that afternoon. So I didn’t acknowledge anything she did as a victory and I told her so in as nice yet firm as I could muster under the circumstances.
A Mountain of Supplies
As mentioned above, we got home about 5 PM. We had called the respiratory therapist Josh to meet us there and he arrived shortly after we did. He brought in boxes upon boxes upon boxes of supplies most of which we didn’t know how to use or even if we would ever need them. By the time he left they were piled high on our dining room table and all over the family room floor. We had no idea where we were going to store the stuff. He came back again the next day with even more supplies and eventually brought the high flow air compressor that I was going to use to humidify my trach when I wasn’t on the ventilator. As I previously reported in the end we never used that compressor very much and ended up getting rid of it after having to fight hard to get it in the first place.
Dad still had to unload my ventilator and all of my clothes, laptop computer etc. out of the van. I did a G-tube feeding and went to bed. We were both incredibly exhausted but especially dad because he had not slept well in the hospital with me the night before on that horrible Guantánamo Bay worthy cot.
The First Day Home
The first night at home was uneventful. Dad and I both got caught up on our sleep. The only problem we have was when we got me off of the ventilator the next morning we did not fully deflate the cuff in my trach and so I had a bit of difficulty breathing when he put in the talking valve. We eventually figured it out and I was able to breathe much easier. We had yet another visit from the respiratory therapist who brought even more supplies. We also had a visit from 2 nurses from St. Vincent were going to come for a half-hour a day a couple times a week to check up on me. I’m not really sure why we had them but in one incident they turned out to be useful.
I was able to get shaved again which felt good. We were not able to get all my prescriptions and as it turned out the nebulizer prescription for albuterol was going to be difficult to fill. Apparently you need some sort of special authorization for Medicare/Medicaid to pay for it. Of course the prescription was signed by either a doctor or nurse practitioner from Seton Hospital. I had no idea who they were. I didn’t recognize the name. We tried to get in touch with them through the case manager Michelle but we could not contact her over the weekend. Finally one of my St. Vincent nurses proved her worth that Saturday by getting on the phone with the pharmacist and reading him the riot act. She gave a real tearjerker scary argument saying that she didn’t want to be responsible if I went into respiratory arrest because I didn’t have my nebulizer medication. He finally relented and filled the prescription. As it turned out I did need a few treatments over the next several days but in the long term I rarely needed nebulizer treatments. I think that initial batch of albuterol lasted me over a year and I think we eventually threw some of it out because it expired and we got another prescription for my regular doctor. [12/29/2016 2:05 PM]
I continued to take notes about my day today progress from the time I got home through January and parts of early February. The story isn’t really interesting in retrospect so I’m not going through all of the detail that I did about the hospital stays. In summary here are some highlights of things I went through.
Typically if I needed to call dad while I was in bed and he was in the living room watching TV or asleep in the recliner, I would just yell really loud. When he was in the bedroom I had a buzzer that I can push and it would ring the alarm in the bedroom. But when I was on the ventilator, I couldn’t call at all by voice. So I had to modify a wireless remote that I had built for the living room to include a buzzer like the one we had in the bedroom.
After spending the entire month in the hospital using a spit cup with a lid and a straw in it, we decided using a regular glass tumbler with no lid and a straw was a bad idea. Dad got some plastic cups that he found in our cabinets that had been left over from some event my mom had hosted years ago. We couldn’t find lids that would fit so I made them out of ninja flex plastic on my 3D printer. I still use plastic cups with 3D printed lids to this day.
I had a follow-up doctor appointment with my family doctor, my pulmonary doctor, and my ENT who trained us how to change the trach. He changed it with my dad watching and then asked dad to remove it and put it back in again while the doctor watched. It all went very smoothly. However a month later when dad tried to change it on its own, we had great difficulty getting the old one out and the new one back in. We got it eventually but it was very difficult and clear the lots of blood. This continued for several months so I made another appointment hoping that he could show us what we were doing wrong.
The doctor sort of looked at us funny and you could tell he was thinking “Didn’t we are ready show you how to do this?” When he went to take out the old trach, he had the same difficulty getting the old one out that we did. When he tried to put in the new one, he could not get it in at all! I was so happy that he was having the same difficulty we did. He finally started probing around my opening using the Yankaur and discovered that my opening was not straight in. It actually slopes downward slightly. So then he tried putting in the trach again but this time angling it downward. It popped right in with little difficulty. Dad and I continued use this method. Since dad passed away in February, my sister Carol has been changing the trach on a monthly basis and it works okay using this downward angle method. I’ve had some trach failures at inappropriate times. The balloon that blows up the internal cuff got damaged and would not inflate. The worst time once the night before my dad’s funeral. I could not put on the ventilator and had to try to sleep without it. I got about three hours sleep and then had to go deliver the eulogy for my dad which you can find here. Other than that we’ve had few problems with the trach these past 3 years.
For the first several weeks I had lots of problems with my back brace not fitting very well. I also had problems with my hips. I just wasn’t used to sitting up in my wheelchair all day every day. Over the course of the next months things began to slowly get back to normal. However some days I had to go back to bed early. While it is possible to do a G-tube feeding in bed, in theory you need to be propped up at an angle for at least 30 minutes after a feeding. Otherwise you risk reflux and aspiration. So we made the decision after all these many years to finally get a hospital bed. That way if I needed to go to bed early, I can still do my late G-tube feeding and prop myself up. It took about five tries to get the equipment provider to get the proper paperwork to my doctor and back again. When we finally got the bed it was not fully automatic as we had requested. It did have a motor to raise and lower the head and feet but it did not have a motor to raise the entire height of the bed. We could have paid the difference in price out of pocket because Medicare/Medicaid would not pay for the fully automatic version but we didn’t discover that until the guy actually delivered the bed. We just decided to live with it as it was. You could manually crank it up or down so we just adjusted it to the height of my old bed and left it there.
As I had speculated, my home health aide Riah had moved on to different clients so we had to train some new people. But they didn’t last very long and eventually we got Riah back again. She continued to work here for nearly 3 years but had to quit a few months ago because of back problems. She hopes to return to work someday and we will welcome her back. We really became very good friends over the past several years and I miss her a lot.
I could fill up a dozen more blog posts about the process of recovery after this incident. It took a long time for me to get back to something similar to my previous normal. Among the things that concerned me was my ability to go out with friends like Rich and Kathy were have friends like the Byram’s or the Brake’s stay with me while dad went to the doctor or did other things. Eventually I got over my concerns and trained them all how to suction my trach and how to do G-tube feedings. I got to the point where I was pretty much back to normal. I thought perhaps my days of going to evening events were going to come to an end but I did eventually attend 2 great concerts at the Deer Creek Music Center with my sister Carol. We also continued to go to hockey games at the Fairgrounds Coliseum but normally try to do afternoon games so it’s easier on me. I continue to go to the movies regularly with my friends Rich and Kathy and we recently saw the final Star Wars film completing a tradition that had lasted 42 years. We have seen every Star Wars movie together (sometimes multiple times) except Rogue One which was playing while I was in the hospital.
The story of my dad’s failing health in 2018 and his death in February 2019 could fill many many more blogs. I’m not sure if I’m up to reliving all of those events. In May 2019 my friend Barbara Alkema and her son Josh moved in with me. That kept me out of a nursing home. My health has deteriorated in the past few months and that has been a big adjustment.
So life continues to send big challenges my way and I do my best to deal with them as they come. I did seriously dedicate myself to documenting the assistive technology such as my iOS switch control and ultimate remote that were so valuable to me in the hospital. I have a new appreciation for what it means to not be able to speak.
Overall the decision to have the trach has kept me alive much longer than I could have without it. It was a good decision to get the trach. It’s allowed me an excellent quality of life and I’m grateful that things like the Passy-Muir speaking valve were invented so that I can continue to be a person with a very strong voice.
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.
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.
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 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.
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.
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.
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.
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.
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.
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. We 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.
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 Click here to read a biography of David Muir. http://www.passy-muir.com/david
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 say to 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 would 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.
Note: this blog was originally written in August 2018 but was updated in 2019 and again in 2020 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”?
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 are a choice of new treatments 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 and 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 causes 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 it is referred to as Motor Neuron Disease. Its most famous patient was renowned astrophysicist 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 as 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! I got the bad copy from both.
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 or grandkids so far 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 65 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 65 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 65 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 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 read in December 2016 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.
Swallowing is extremely difficult. In May 2016 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.
Bathroom issues have always been a problem for me. In 2009 I had a ruptured intestine from diverticulitis and temporarily had a colostomy bag. However after about three months I had the procedure reversed and since then I have pooped “normally”. For many years I would use my Hoyer to lift me onto the toilet but in recent years that hasn’t been very comfortable and I’ve had to use a bedpan.
In September 2019 I had a suprapubic catheter installed in my bladder. If the tube that goes through a hole in my lower abdomen and empties my urine into a leg bag. Although I’m still susceptible to urinary infections overall it’s been a great solution I sort of wish I had done something earlier.
New Treatment Options
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 65, 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 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.
Option 2 Gene Therapy Zolgensma
In May 2019 a new treatment was approved by the FDA. It is a gene therapy called Zolgensma. It is only approved for Type 1 patients age 24 months and younger. Here is a link that explains how it works.
In brief it is given by an IV injection. This is just any ordinary IV and is not a spinal injection like Spinraza. What they have done is taken a working copy of the SMN1 gene and inserted it into something called a vector which is basically an inert virus. The virus carries the new gene throughout your body and deposits it in your motor neurons. At least that’s what the video says. I would think it would deposit it everywhere but what do I know? It doesn’t actually alter your existing DNA. It just throws in an extra free-floating chunk that does what your damaged chromosome 5’s SMN1 gene doesn’t do. Once it has deposited the piece of DNA into the nucleus of your cells, the vector disintegrates and is excreted as waste. The cell then uses that extra piece of DNA to create SMN1 protein.
This is a one-time treatment whereas Spinraza is a new spinal injection every four months. You may have thought that Spinraza was ridiculously expensive. Zolgensma runs at about $2.1 million for a single dose. The last I heard, that makes it the most expensive drug per dose in the world. But if you consider the lifetime cost of Spinraza at about $350,000 per year it makes Zolgensma cheaper. Imagine what it would cost to created drug that you would take only once and never need to take it again. The development costs of most drugs is spread over hundreds of thousands or even millions of patients and spread over millions of doses. But a small population like SMA and a one time treatment it’s really difficult to recover your development costs.
The catch for someone like me is as I said, it’s only available for infants 24 months and younger. So it’s not available for me. There has always been hope that it would eventually be approved for older patients. As I understand it the sticking point is that this drug has a possibility of causing liver damage. If it was to get approved it would probably have to be a spinal injection like Spinraza so that it could get straight to the motor neurons and not necessarily have to pass through the liver and cause possible damage. Apparently infant liver is not as susceptible to this damage as it would be for older patients. I’ve not heard anything recently about them expanding it to older patients. If they ever do offer it to patients my age I might consider it considering it would be just a one time event.
Option 3 Evrysdi a.k.a. Risdiplam
In August 2020 (this month as I’m writing this) the FDA has approved a new drug called Evrysdi which is the new brand name for a drug we have previously been calling Risdiplam. It is an oral treatment that works the same way as Spinraza in that it makes the SMN2 gene work better. It is mixed as a liquid that you can drink or take via a G-tube daily. The idea that you don’t need to have an outpatient procedure to stick a needle in your spine makes it very appealing. In fact I have already decided that I will be looking into taking this treatment assuming that Medicare/Medicaid will approve it. The approval is only a few days old as I’m writing this update so it is still full of uncertainties about things like price and insurance coverage. In all likelihood it will be expensive on the same order as Spinraza.
One of the listed side effects is that it can likely cause birth defects in pregnant women and infertility in men. At age 65 with no wife or girlfriend this is a nonissue for me. But already in the Facebook forums parents of kids with SMA are debating whether or not Evrysdi is appropriate for their kids if it means ruining their chance at having children. There is speculation that you would temporarily go off the drug when trying to conceive but I haven’t read anything official that indicates that the possibility. The websites mentioned that you might want to collect and freeze semen for future use before taking the drug. So I’m sure that will be a big topic for further debate.
Here is the link to an article about Evrysdi and its new approval by the FDA.
There is also a lot of talk about using stem cells to regrow the dead motor neurons. None of the available treatment options can repair the damaged motor neurons. That’s one of the reasons that none of these options will do me a lot of good behind slowing or stopping further deterioration. 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.
The outlook for some like me really isn’t a whole lot brighter given these treatment options. Having lived with the disease for 65 years I’ve probably lost the vast majority of my motor neurons and short of some sort of stem cell regenerative treatment that’s not going to change. The best that these new treatments can do for me and other older patients is to slow down or perhaps stop the progression of the disease. As I mentioned before, if these treatments had been available when I was 20 something or younger I would’ve been jumping on immediately no questions asked.
I have to revisit the issue of selective in vitro implantation and abortion in the light of these new treatment options. The kids who have been treated at a very early age (less than 12 months) are showing amazing results. Some kids who have gotten early treatment are basically exhibiting no effects from the disease and are progressing completely normally. It’s my hope is that parents who are considering selective implantation of in vitro embryos and possible termination will consider that the outlook for their kids is not quite as bleak as it once was.
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 questions 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. 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.
Recently a famous YouTuber named Shaun Burcaw also has SMA Type 2 posted a video titled “Things You Should NEVER Say To A Disabled Person”. I agreed with about 95% of what he had to say but I felt compelled to make my own reaction video to address additional issues about the things upon which we agreed and to outline my feelings about the issues where we disagreed. And as I said above, I’ve got pretty thick skin and its almost impossible to offend me. So don’t let that video scare you away from talking to me or asking questions. Here’s a link.
Cure SMA -– Charitable organization that funds research and supports families