Tough to Swallow

On Thursday April 14, 2016 I reached a turning point regarding my disability. However the story behind this incident had been coming for a very long time. It’s taken me four days to write and rewrite the story. I can’t just tell what happened. I have to put it in the context of events that event evolving for years.

 

Good News/Bad News

Having Spinal Muscular Atrophy Type II is always been a sort of “good news/bad news” kind of situation. Although I’ve often described it as a type of muscular dystrophy, it doesn’t progress as rapidly or severely as the most common type of MD which is Duchenne muscular dystrophy. All of my friends that I went to school with who had Duchenne muscular dystrophy died in their teens or early twenties. Actually SMA technically isn’t muscular dystrophy. It is more closely related to ALS or motor neuron disease most famously contracted by Lou Gehrig and Stephen Hawking. Both SMA and ALS affect the motor neurons and are progressively degenerative. But again the good news is that SMA does not progress nearly as rapidly as ALS. Having known people who were spinal cord injured, I counted myself lucky that my disability was not from some injury. They seem to have the added trouble of the reality that they had once been able-bodied and then lost that ability. Although I’ve had to struggle with the slow progression of by disability, I’ve always had some severe kind of disability. I haven’t had to deal with the sense of loss as much as they would. Similarly I’ve counted my blessings that I don’t have the communications difficulties of someone like my late friend Christopher Lee who had severe cerebral palsy and could not talk so that the average person could understand him. I guess one of my coping mechanisms has been a “glass half full” approach to my disability.

The bad news about SMA is that even though it’s not as bad as a number of other kinds of related disabilities, it does have its serious challenges and it is decidedly progressive. Last summer I turned 60 years old and that caused me to reflect on the progression of my disability. Also the fact that I could no longer drive my power wheelchair using my hand on a joystick has heightened my sense of the progression of my disease. It’s taken me nearly a year to get a new wheelchair that I operate and even then it’s not going to be easy. I could see the inability to drive my chair looming in the distance for many years. I knew it was coming and I put it off as long as I could before giving up on using my hand on the joystick and going to rate mouth controlled system.

 

Farewell Popcorn

Other than the wheelchair driving difficulty, another ticking time bomb of the progression of my disability has been swallowing difficulties. Because my disease progresses so slowly, it’s difficult to pinpoint a particular point in time when a new symptom actually occurs. The problems sneak up on you in the way that you don’t really notice. It’s a bit likely apocryphal proverb about putting a frog in a pot of water and turning up the heat slowly. If you turn it up fast, the frog jumps out. If you turn it up slowly the frog will cook. My disability “turns up the heat” on me very slowly.

At some point perhaps 25 or 30 years ago I was noticing that food would stick in the back of my throat. I didn’t really choke on it most of the time. There would just be a little chunk of ground beef or perhaps a piece of hotdog about the size of a pencil eraser that would get caught somewhere in my throat and could stay there for hours. It would get stuck there during supper and many hours later when I would go to bed, as my head would get tilted or my neck twisted at a strange angle, it would get dislodged and I would spit it out or swallow it again. As long as it was something somewhat mushy or rubbery like a piece of meat I would not choke on it and it would not give any problems except for a funny feeling in my throat. My normal diet does not include raw vegetables or salads. I just never had a taste for them. But something like the hardshell of a piece of popcorn would easily get caught and because it was hard with rough edges. I had to give up even popcorn altogether so long ago I don’t recall when I had my last piece.

Somewhere along in my 30s, I had a nasty case of pneumonia that landed me in the hospital for over a week. On two different occasions during that stay, they had to stick a tube down my throat and suction the gunk out of my lungs. While the doctor was doing that, I asked him to see if there was something unusual in my throat as he put the scope down it. It always felt like there was a shelf or a flap where the food would sit with it would get stuck. He reported that he saw nothing unusual. During the procedure a couple of times he asked me to swallow and I could not. His attitude was that I was being uncooperative or nervous or something. He managed to do what he needed to do anyway. I wasn’t uncooperative. I just simply could not swallow with my head in that position.

I think it was shortly after that suctioning situation that I became more concerned about my swallowing problems. It was becoming more likely that I would choke on certain foods. Because my lungs are very weak to begin with it is very difficult for me to cough up anything when I do choke. When it gets really bad the only way I can deal with it is to lay down in bed flat so that I’m not fighting gravity. Then I’m able to cough up what I need to cough up.

After discussing it with my doctor, we decided I should have a fluoroscopic swallowing study. It’s a type of real-time x-ray using a video screen. They have you chew up and swallow food that has been laced with barium. That makes it show up on x-rays screen. It should have been a simple procedure if I could’ve done it sitting in my wheelchair but instead they had to sit me up on the edge of an exam table. Mom and dad had to hold me in position and hold my head up straight while we did it. The x-ray technician was a real asshole. I would try to tell her something about what I was needing and she wouldn’t stop to listen to me. My mom chewed her out really good. Nothing would set my mom off on an angry tirade than if someone didn’t listen to me or treat me with respect. This particular incident was one of my favorites. Anyway the end result was that the report said I was swallowing terribly. The recommendation was that I should stop eating solid food immediately. My response was to laugh and basically say fuck no. They said that when a normal person swallows, the esophagus raises up and elongates. Mine isn’t doing that at all.

I just did a Google search and a YouTube search and found the following video that illustrates exactly what they are talking about. I wish I had a video of my actual tests to show you. This video is not me but if you watch when the person swallows you can see the upward motion that they were talking about when the person swallows. Apparently I don’t do what you see in this video.

The end result of all of this was that I just learned what to do and not to do when I’m swallowing. I’m pretty sure that by this time I had already given up on things like popcorn. But I started being more careful about what I would eat and how I would eat it. For some reason I can eat ordinary potato chips okay however corn chips like Doritos chew up to be more gritty and present a choking hazard. Fortunately I’ve not ever been a big fan of corn chips. If there was something gritty that I wanted to eat it would help if I would chew it up with something else like bread. The doughy food protected my throat from the hard scratchiness of something like bacon. Even as my throat has gotten worse over the years, bacon is one of the things I’ve not been able to give up completely. I saw standup comedian at one time on TV talk about his fear of flying. He said that every time he gets off of an airplane safely he considers it a failed suicide attempt. I thought that it was so funny that I adopted that phrase for myself. Every time I swallow bacon I consider it a failed suicide attempt 🙂 Some days bacon is worth risking your life.

 

Dining Out

I mentioned earlier that when I do get a coughing spell sometimes the only way to get over it is to lie down. That can make it especially dangerous if I’m not somewhere where I can lie down. On a couple of occasions I’ve had choking spells in dangerous situations.

I recall one time on Thanksgiving at my sister Carol’s house I got a piece of turkey caught in my throat. With the help of my brother-in-law Joe, dad had to pick me up and laid me down in her bed until I got things coughed up. Getting me out of my chair and into a bed without my Hoyer lift is difficult but not impossible especially if you have two people to do it. I don’t weigh so much that a single strong person could not lift me however it’s harder on me to be lifted by one person because my arms or legs to get tangled up in a weird way. Getting me back into the wheelchair is a bit more difficult because as you lift me, my back brace shifts around. When I’m getting into the bed I don’t care how the brace gets messed up. Typically even if you pick me up with a Hoyer lift, once I’ve laid down we had to redo the brace from scratch because it gets shoved out of place. The process of putting me back in the chair with the lift doesn’t mess up the brace too much. I start with the brace on me lower that it should be and as you lift me it tends to slide up hopefully into the right place. When lifting me by hand the brace slippage is more unpredictable. I usually end up sitting uncomfortably after such an incident. Even under ideal conditions if I had to lie down and get back up again during the day it never feels like the brace gets back on me properly the second time. It’s just something about twisting my body in unusual ways in the middle of the day that messes me up.

The Thanksgiving incident wasn’t too bad because I was in someone’s home and both my dad and another strong person were available to lift into a nearby bed. A somewhat more frightening incident occurred one time when I was out to dinner with my friend Judy Chapman. She has a much better memory for dates than I do and after discussing it with her recently we concluded this was probably sometime in the fall 1999. We went out to eat and then we were planning to visit her dad in a nursing home or hospital. I got something caught in my throat and began choking.

I suppose I should explain that when I say “choking” it isn’t one of those situations where your air gets cut off completely and you start turning blue and someone has to do the Heimlich maneuver on you. It’s more of a situation where I start coughing because the food is scratching my throat. Your natural defense mechanisms create lots of mucus to help you try to clear whenever is caught. The mucus does help dislodge whatever I’m choking on but because my lungs are so weak I cannot cough up the mucus. Of course your nose starts running as well and you start blowing those nasty snot bubbles which looks really gross in a public place like Shapiro’s Delicatessen. Sometimes it’s just a case of mind over matter where you have to will yourself to not cough or gag. Both are an automatic reflex that with concentrated effort one can override mentally. We got back in my van and went straight home without going to see Judy’s father. On another occasion I did get to visit him in the hospital before he died. As a side note… He died on December 1, 1999 which was the same day that my dad had heart bypass surgery in the same hospital. While I was waiting on my dad’s recovery, I went upstairs to see how Judy’s dad was doing. He died just a few minutes before I arrived. At least I did get there to give Judy and her family a hug shortly after that.

I can’t say for certain that the dinner date with Judy was the last time that I ever ate out in a restaurant with a friend but it might actually have been the last. I know for certain that was not the last time I had ever eaten out in a restaurant with family. We would routinely stop for dinner at the Steak’n’Shake on our way to the lake. I would try to be especially careful swallowing because we usually stopped at the one on the south side which was a good 30 – 45 minutes from home or the lake. In recent years the only place I’ve eaten out has been the Golden Corral Buffet or Denny’s or Applebee’s all of which are just 10 minutes from home. I’ve avoided a lot of pitch in dinners at church. When I was managing the poker tournaments at the church festival I was always careful what I would eat. Sometimes dinner at the festival consisted of nothing but French fries because they are mushy enough not to get caught.

 

Warning Signs

The incidents I’ve been describing have all been more than 15 years ago. The swallowing study was probably 20 or 25 years ago. Over all these years I’ve just been managing the situation as best I can. Gradually certain foods have continued to drop off my menu. Within the past couple of years I’ve had to give up one of my favorites which is steak. In order to get food to go down I have to chew it up so thoroughly that it takes forever sometimes just to get down a single bite. If you chew steak that thoroughly it eventually loses all flavor. And unless it is extremely tender steak of the highest quality I couldn’t get it down at all. Normally we would only eat steak on special occasion but I finally had to tell dad a few years ago that I was giving it up altogether. The frustration I had in trying to swallow it was ruining any pleasure I was getting from eating my all-time favorite food.

Somewhere along the way I corresponded online one time with a guy from Australia who also has Spinal Muscular Atrophy. He said that he was 60 years old. I don’t know how old I was at the time but I’m going to guess 45 or 50. I remember thinking that it was good to hear that a guy with SMA made it to 60. But I don’t think 60 was extremely far off. I searched through all my emails back to 2004 and cannot find the correspondence. I must’ve been using a different email system back then. He said something that really surprised me. He wasn’t eating anymore. He had to have a gastric feeding tube inserted into his stomach. They do a minor surgical procedure that inserts a tube into your abdomen and into your stomach. You have a large syringe approximately an inch in diameter to which you pour or force with a plunger some sort of protein liquid.

A few years later after this correspondence my mother had to have a g-tube because the radiation treatments for her cancer had irritated her esophagus and she could not swallow anything. She had problems that the syringe didn’t want to stay connected to the g-tube unless you held it in place. My dad put to work his sheet-metal maker skills and made a little bracket to hold it in place. Unfortunately mom was pretty weak and she would routinely fall asleep while she waited for the liquid to drip into her. She ended up spilling it anyway on many occasions. Fortunately she only had it for a month or two.

Another foreshadowing of what was to come occurred on February 2, 2006. According to IMDb.com that was the air date for an episode of “ER” season 12 episode 13. It featured a guest star appearance of one of my favorite actors James Woods. He typically plays brainy, self-confident, sometimes arrogant characters. I wonder why I like those kind of characters 🙂 I also liked his starring role as a smart, arrogant, lawyer in a short-lived TV series called “Shark”. This performance for ER was a typical character for him. He played a college professor Dr. Nate Lennox who had ALS. Actually as I was preparing this blog I had thought his character had SMA but when I looked it up I saw it was actually ALS which as I had previously mentioned is similar. (I was confusing it with an episode of “House M.D.” which featured a character with SMA). Woods’ performance in that episode of ER earned him an Emmy nomination for Best Guest Star. He should have won but didn’t.

James Woods

The episode titled “Body and Soul” was told as a series of flashbacks as the professor made various trips to the ER. Each visit showed a different stage of the progression of his disease. About 15 minutes into the episode it shows an incident where he is at a fancy dinner where he is about to receive an award. He’s in a wheelchair is being fed by his caregiver. She is a former student and assistant named Fran. (Hell of a coincidence isn’t it?) Just as they are announcing she is the winner of the award he begins choking on his food. They rush him to the ER. The following conversation takes place…


ER doctor: Well, his chest x-ray is negative for aspiration. You got lucky, Nate.

Professor: Yeah. (sarcastically) I’m the luckiest man on the face of the Earth.

ER doctor: It’s time for a feeding tube.

Professor: No, it’s not.

ER doctor: Well, your chewing and swallowing muscles are getting pretty weak.

Professor: Fran will have to cut my meat smaller (looks at Fran) …won’t she?

Fran: Takes him an hour to eat a meal.

ER doctor: He’s lost 10 pounds.

Professor: More like 5. (sarcastically) The rest is water weight.

ER doctor: Weight loss accelerates the progression of ALS. The extra calories from the tube feeding will mean increased strength more energy and longer survival.


I can attest that cutting your meat smaller doesn’t really help and apparently the professor knew that. He agreed to have the G-tube installed. I already knew that there was probably a G-tube in my future. The sentence that was a bit of an eye-opener for me was with his caregiver friend says “Takes an hour to eat a meal”. I had not really thought about that before. I thought to myself that when it was taking me an hour to eat a meal I would know that I needed the G-tube as well.

In other flashbacks earlier he resisted getting a CPAP to help him breathe at night. In another flashback when it came time to put in a trach because he couldn’t breathe at all there was a difference of opinion as to whether or not he consented to have the trach installed and to be put on a ventilator. I had already been using a CPAP for many years and had seen the benefits of it. I was already prepared for the possibility of a ventilator some day and while I don’t look forward to it, at least I know it’s coming. I won’t spoil the rest of the episode but it has a very dramatic conclusion with a plot twist. If you ever catch it on a rerun be sure to check it out. In preparation for this blog I purchased a copy on Amazon prime video for $1.95. I can show it to you. It is brilliantly well-written and acted.

 

I Don’t Give a Spit

One of the consequences of all of this isn’t just about eating food. You probably don’t think about it but hundreds perhaps thousands of times a day you swallow spit. My mom had a problem one time one time unrelated to her cancer in which she got a pill caught in her esophagus. It was not in her windpipe so she could breathe okay. She just couldn’t swallow. At first when it was stuck she just tried swallowing lots of water but eventually her esophagus got so irritated that it closed up completely and she couldn’t swallow anything. She ended up having to go to the ER and they were able to go down her throat and get it dislodged. But it really called home for all of us who heard about it the fact that you do need to swallow spit on a regular basis. Until she got it taken care of she had to carry a cup to spit into.

For some reason my saliva is exceptionally thick and viscous. When I brush my teeth and I need to spit, we have discovered it’s easier if I spit into a drinking straw rather than to try to lean forward and spit into a bowl or a glass. No matter how hard I blow into the straw as I finish spitting, when you pull the straw away from my mouth there is always a long strand of saliva that stays connected. It’s not uncommon for me to produce a strand more than a foot long. I have often joked that I have industrial-strength spit. I keep threatening to donate a sample to NASA or some other scientific research agency to see if they can make some sort of superglue or lubricant out of it.

As I said earlier, you probably don’t think a lot about swallowing spit but I’ve had to give it a lot of thought. It seems that when I tried to swallow something I could only get down about two thirds or three fourths of what I’m trying to swallow. When it’s something solid it seems like the only way to get something to go down is to have something in front of it to push it back down. That means there’s constantly something un-swallowable in my mouth all the time and when I’m not eating that something is spit. If I leave it resting and in its un-swallowed location at the back of my throat then there is a risk that if I inhale quickly through my mouth it would get sucked into my lungs.

Most of the times that I’ve choked on food it was because there was a small crumb resting at the back of my throat and if I inhale quickly through my mouth it would get sucked in. One of the strategies I’ve had to develop while I’m eating is to pay close attention to how I breathe. Talking is also a problem. We all learned “”Don’t talk with your mouth full” but the proverb should say “Don’t talk with anything in your mouth”. The problem is when you can only swallow a percentage of what is in your mouth, your mouth is never completely empty. Because my lung capacity is so small, it is very rare that I can get out a complete sentence without having to gasp for a breath in the middle. It’s usually during one of these midsentence gasps that I’ve lost concentration about what’s in my mouth and something gets sucked in.

On various visits to the hospital they have used a suction device just to clear my mouth of spit or phlegm. At first I thought they were calling it a “yanker” because it would yank the stuff out of your mouth. Actually it’s called a “Yankauer”. According to Wikipedia it was “…developed around 1907 by American otolaryngologist Sidney Yankauer (1872-1932), the Yankauer suction instrument has become the most common medical suction instrument in the world.”

yankauer

RobitussinIn recent years as it has become more and more difficult for me to empty my mouth by swallowing. I’ve considered trying to get a suction device. At one point I talked to my lung doctor about it and mentioned the extreme viscosity of my saliva. My chronic sinus problems make things even worse. He seemed reluctant to sign off on purchasing such a device. He suggested using an expectorant medicine like Mucinex or Robitussin. For many years now I’ve been using Robitussin DM which contains not only an expectorant but a cough suppressant which helps alleviate the scratchy feeling and to suppress my cough/gag reflex. I discovered that the sugar-free Robitussin DM isn’t as thick and syrupy as the usual kind and is easier to swallow. I’ve never been a big fan of cherry flavor syrup anyway.

The constant collection of spit in my mouth has been especially troublesome in recent years while trying to sleep. My mouth tends to dry out at night which helps alleviate the problem somewhat. There have been a number of occasions if I was lying on my back that I would wake up coughing because the spit had gotten into my windpipe. Most of the time I lie on my right side and the result has been a nasty pool of spit on my pillow. When I’m on my side we have been putting a dry washcloth tucked under my cheek which makes it easier to clean up later on.

During the day one of the strategies to manage the spit is to swallow as much as I can. Then I retrieve what’s left over from the back of my mouth and tuck it into my right cheek. I know that it looks weird. It adversely affects my speech. Sometimes it messes up my speech so much that my dictation software can’t understand me. Stuffing the spit in my cheek is basically a gross thing to do but it has been the only coping mechanism that I have come up with. On many occasions friends have offered to help me spit it out but I have to explain that if I did that, I would just have to do it again every 10 minutes. Also the quantity of spit we are talking about is more than could be easily put into a tissue or handkerchief. I could carry around a cup with a straw to spit in but that I would require dealing with the foot long strands of saliva dripping all over the place.

The bottom line is, spit management has become increasingly troublesome prospect on top of all of my other swallowing and coughing difficulties.

 

The Sinus Connection

Rose_of_sharonUnless I lose concentration or something unusual happens, I have been managing the food choking issues pretty well in recent years. However the sinuses have complicated the situation. I’ve always had allergies during the summer. There is a particular flowering bush called “Rose of Sharon” that has a beautiful purple flower with a fuzzy yellow center that is devastating to me. It usually blooms in July around my birthday. I may be allergic to other kinds of pollen but I know that one for
[image rose of Sharon]

Additionally having a CPAP machine blowing air up your nose all night long tends to aggravate your sinuses. Furthermore I take Flomax prescription medicine for my prostate to make it easier for me to urinate. Flomax doesn’t just make your urine flow. Apparently it makes your nose flow to the max as well. A runny nose is a well-documented side effect. All of these sinus situations cause drainage in my throat and tend to make the thick saliva worse.

At some point I’m guessing maybe two years ago I started having coughing spells even when I wasn’t eating. My sinuses would drain in my throat and make it scratchy. That would cause a mucous reaction which would also make my nose run worse which would cause more drainage which made it worse and worse. Sometimes the spells were associated with eating and possibly caused by a crumb but often it would come out of nowhere. These incidents were often more severe than the food related incidents as they would worsen much more quickly. At first I would try to fight them off by willpower but the mucus was so thick that I would find myself unable to breathe at all. I can’t begin to count the number of occasions where we rushed to my bedroom to lie me down and we barely got me there in time before I was in full respiratory arrest. Once I lie down and catch my breath I can usually cough everything up and be ready to get dressed and up again in about an hour. If it occurs in the evening I usually just stay in bed. My recent adaptations of being able to use my laptop computer while in bed have lessened the impact of that decision to stay down. I’ve had to train myself to not wait until I’m in such dire distress before giving and going to bed.

A year ago when I started shopping for a new wheelchair we made the decision to get one that would tilt and recline. Not only would it solve the problem of what to do if I choked when I was away from home, our hope was that reclining even at home would be easier. It’s quite a process in that you have to hook me up in the Hoyer lift, transfer me to bed, and remove my back brace. Removing the brace makes it easier to breathe and the brace to be completely redone before getting me back up anyway. The way my bladder operates, within a minute of lying down I have to pee. When I’m lying down it’s easier to prop up the urinal if you pull down my pants. Even if I don’t pee, we had to take my pants down to get the brace back on anyway. Because we have to roll me around the lot to get my brace back on later it’s easier to roll me with my shoes off so I take them off as well. Basically I get 95% naked just cough up a piece of food or gunk in my lungs. Avoiding all that with a reclining chair was going to be a lot easier and of course it might actually save my life.

The day that I did a test drive of a reclining chair, while I was reclined I coughed up a small piece of White Castle Hamburger that had been stuck in the back of my throat for a couple of hours. It was not bad enough that I was choking on it. But lying back in the reclining chair and being able to get it dislodged proved to me that the reclining chair was going to work. And given the suddenness and severity of the sinus related incidents, a reclining chair might just save my life. As I write this blog I have had the new chair about a month and I already have had one sinus related scratchy throat incident in which I stopped what I was doing and had dad recline me. I was able to successfully cough up the phlegm that had already collected and relax until the Robitussin and Sudafed kicked in.

 

The Chris Young Pharmacy

It’s not just Robitussin that has become a staple item around here. I’ve tried every type of nasal steroid spray. I’m currently using two different kinds that have been the best I’ve used so far. One is the over-the-counter Flonase generic name Fluticasone and the other is a prescription called Azelastine. They make a spray called Dymista that is the combination of both of those sprays but my insurance won’t pay for it. It will pay for them separately but not together. The other go to drug is Sudafed. It’s the only decongestant I found that will dry out my nose. The doctor has warned me that is bad for my heart and I believe that. It can’t be good for you. It’s banned from the Olympics because it’s a stimulant. Also it is the main ingredient in cooking crystal meth. Even though it’s nonprescription, you have to sign for it at the pharmacy. At the rate I take it I’m probably on some DEA watchlist :-). I tried using the ephedrine free version it actually made my sinuses worse. Seriously I never take more than one dose per day and even if I’m going through a bad spell I generally only take it three or four days a week. Sometimes only once a week. Sometimes I don’t take any for long periods of time.

drugs

While we are on the topic of drugs, most of the medicine that I take on a daily basis is pretty small. Three times a day I take isosorbide for my heart. It is about the size of a baby aspirin. I take one dose of digoxin for my heart. I take a half of a pill of diuretic called bumetanide. When discussing my sinus medication I neglected to mention I also take a Zyrtec over-the-counter sinus pill. To help prevent urinary infections I take a very mild antibiotic called trimethoprim. I’ve never had any difficulty swallowing the small pills but that oval-shaped one has sometimes been a little difficult. Occasionally I would break it in two. The Flomax is a rather large capsule but I discovered that the capsule is only about a third full of powder. If you leave it in your mouth for a few seconds the capsule gets soft and you can smash it flat. That makes it much easier to swallow. Sometimes I end up chewing it up completely.

tylenol

I take a lot of Tylenol for sinus headaches, body aches, and ordinary headaches or fever when I’m sick. Long ago I became unable to take a regular Tylenol capsule. For a while they were making a tablet that was chewable or dissolvable in your mouth. It was about the size of a large antacid tablet and had a mild minty flavor to it. They were pretty expensive and I guess they never took off in the marketplace because they discontinued them. Soon after that, they began making a liquid Tylenol in an adult dose. They had been making with children’s Tylenol for a long time that you needed to take a lot of it to get the adult dose. I’ve always been worried that they would discontinue the liquid adult Tylenol and in fact under the Tylenol brand I think they had discontinued it. But you can get store brands at Walgreens and Mejer’s. We always buy several bottles at once because it’s not always in stock. I’m not fond of the cherry flavor Tylenol but that’s all I’ve been able to find.

For things like sinus infections or colds or flu I usually get some sort of ampicillin or other penicillin like antibiotic. They usually all are available in liquid form. My usual antibiotic for urinary infections is Levaquin. The normal dose is 500 mg and I discovered that if they give me two 250 mg pills instead then I could get those down. They are a hard pill shaped like a capsule but they are very long and very skinny compared to most capsules. For a long time I was able to swallow them. All the pills I mentioned except for Levaquin fortunately do not have a very nasty taste if you end up having to bite into one or if they dissolve in your mouth. But Levaquin is probably the foulest tasting thing I’ve ever put in my mouth. It has a protective coating but if something goes wrong and that coating melts you definitely don’t want to experience that taste. At one point I discovered that Levaquin came in a liquid form. I tried it once and decided I would rather choke on the pill that ever take that liquid. It was the same horrible taste I’ve experienced if the pill melted in my mouth and they tried (unsuccessfully) to mask it with a strong bitter lemon taste. Over the past couple of years however even the long skinny 250 mg Levaquin has been too difficult to swallow so we crunch it up into a powder and mix it in with chocolate pudding. The pudding doesn’t completely mask the nasty taste but it is tolerable. The song is correct… A spoonful of sugar does help the medicine go down.

I’m guessing it’s been for the past couple of months that even the small pills that I used to be able to swallow easily have not been going down very well. Fortunately none of my regular small pills had a nasty taste and I end up just chewing them up and swallowing them. Speaking of chewing pills… I forgot to mention that at one point I tried an alternative to Flomax to help loosen up my prostate. It was the weirdest shaped pill I’ve ever seen. It was completely cylindrical with a flat end on each end not the rounded end you would expect. It was divided in two different colors. I learned that one half was a quick release and the other half was time-released. When I tried to swallow it, it’s got stuck in my throat. The only way to get it down was drink lots of water which sped up the dissolving of the time-released part. I got horribly sick from the overdose. Nothing dangerous but I only took one of them and said to hell with that. Anyway the point is about able to take anything that has a time-release to it because you are not supposed to chew up or crush such pills.

 

Storytelling

Speaking of drugs… Back before Bill Cosby was infamous for being a drug wielding rapist, he had some pretty funny comedy routines which I greatly admired. It really pisses me off that Cosby turned out to be such a pervert. I’ve so much enjoyed telling his stories and emulating his style. I’m going to continue to appreciate, enjoy, and remember fondly his humor and skill as an entertainer. Just because I quote his well-crafted humor or make references to it should not be considered support for his nefarious activities. I will continue to emulate the better parts of his character. My natural storytelling style is similar to Cosby with his passion for telling a story in complete context with a lengthy set up. Somehow unlike him, I’ve managed to do so without drugging anyone.

My favorite of his long stories were his original routines about his childhood friend “Fat Albert”. On one of his comedy albums he tells a very long story, the purpose of which was to illustrate through multiple incidents just how fat that Fat Albert actually was. Then he pauses to take a breath and says…

“So… I told you that story so I could tell you this one.”

He then proceeds to tell a story about how he tricked Fat Albert to run up a flight of stairs to see something cool. At the top of the landing he placed a giant cardboard cutout of Frankenstein’s monster that he had stolen from a local theater. Unfortunately as they were running up the stairs, he remembered too late that he was behind Fat Albert. You are left to imagine what happened when his rotund friend came charging back down the stairs to escape the monster and ran over Cosby. Cosby is such a vivid storyteller he doesn’t need to finish the rest of the story. He spent 10 or 15 minutes explaining why Fat Albert deserved his nickname just so he could tell you a two minute story about how that chubby chum once ran over him running down a stairway.

I’ve always loved that line where he says “I told you that story so I could tell you this one.” I find myself quoting it frequently. I’ve written 6000 words in this blog post already and I still haven’t gotten to the story that I wanted to tell you. But I wanted to tell you the Cosby story just so that I could write the next sentence.

I told you that story my history of choking and coughing so I could tell you this one.

 

The Day in Question

On Thursday April 14, 2016 I couldn’t eat my lunch

All of the history I have just described in over 6000 words was leading up to this day when I couldn’t eat my lunch. Now I need to tell you about what I usually do for lunch.

When I was a kid, I would eat a bologna sandwich with pickles and ketchup every day for lunch. Somewhere along the way I switched to eating a tuna salad sandwich everyday for lunch. Mom would mix up a very simple recipe using Chicken of the Sea Tuna. She used the kind packed in spring water not the kind which is packed in oil. She would mix it with Hellmann’s Real Mayonnaise and sweet pickle relish. Somehow through four years of college I managed to make such a sandwich survive spoiling in room temperature from when I would leave in the morning until lunchtime. I would also add potato chips and a Coke. When I went to work after college I ate cheeseburgers at the student union building cafeteria. But when I had to quit work I went back to mom’s famous tuna fish exclusively. Sometimes I would switch it up and do bologna with yellow mustard.

In recent years I’ve gotten into a pattern of doing bologna one day and tuna the next day alternating every other day. Whether tuna or bologna I would include a handful of ripple potato chips and a Coke. Rather than eating the bologna in a sandwich, I just take two slices of bologna and cut it up into bite-size pieces. It’s sort of like a homemade grown-up version of the kids snack “Lunchables”. On Sunday I eat a leftover White Castle. The alternating bologna/tuna pattern has been pretty much constant for seven or eight years. Thursday April 14, 2016 was a bologna day.

I’ve had a home health aide for just over seven years. I’m allocated two hours per day. They give me a bed bath, dressed, in my wheelchair, and they feed me lunch. When we first started seven years ago that entire process could be completed in about 90 minutes especially if I did not need to shave or sit on the toilet. For the past three years I’ve been taken care of by a guy named Rick. He moves a little slower than some of the caregivers I’ve had. Unfortunately his health has been deteriorating and he has to stop and rest for a minute or two several times during the process. We were easily filling up and sometimes going 5 or 10 minutes past the allotted two hours. I didn’t mind because Rick did such a good job.

Last November Rick’s health issues became so severe he had to quit and go on disability himself. We remain good friends and stay in touch on Facebook. He also attends my church sometimes. I’m now on my third caregiver since Rick left. The current girl is named Quita and she does a wonderful job. She works quickly, efficiently, and safely. She’s been working here maybe five or six weeks.

it still takes us two hours. I couldn’t figure out why. Things always go slow when a person is first learning the ropes but she has been here long enough that she’s going at a decent speed. She wasn’t as slow as Rick. We should have been able to do it easily in 90 minutes on a day where I didn’t shave or sit on the toilet. I didn’t think I was taking any longer. Somewhere over the past couple of weeks I began to realize it was in fact me who was taking longer. We were getting done dressing me in a reasonable amount of time. The change was that it was taking me longer to eat.

I have become Professor Nate Lennox as portrayed by James Woods in his Emmy nominated performance from season 12 episode 13 of the hit television series “ER”.

In that story they said it took him an hour to a meal. It was taking me a good 40 minutes to eat one half of a tuna fish sandwich, eight potato chips and a Coke. Or 2 slices of bologna, chips and Coke. I should’ve been able to scarf that down in 10 or 15 minutes. I also noticed gradually that dinner was taking longer. Dad is always finishing his dinner way ahead of me. About 9 PM every evening I eat a snack while watching TV. It consists of 3 Chewy Chips Ahoy chocolate chip cookies, a half a glass of milk, and a bottle of Ensure. I used to start the snack while watching a sitcom and I would finish before the sitcom finished. In recent weeks that’s taking me 35-40 minutes which is longer than a sitcom especially since I fast-forward through the commercials on my DVR.

On Thursday April 14, 2016, as I said was a bologna day. It was a severe struggle to swallow every bite. For some reason it just didn’t want to go down. Even drinking a Coke was next to impossible. Sometimes if I drink something that is too cold my throat would tend to close up and make it difficult to swallow. But on this particular day nothing would go down. The Coke wasn’t too cold. The bologna isn’t especially gritty. The chips were my regular potato chips. My throat simply would not cooperate. I normally cut the bologna into eight wedge-shaped pieces and it took me 40 minutes to eat three of them. Dad was out running errands somewhere. My caregiver Quita had to leave to go to her next client. I just gave up eating lunch.

Dad got home a few minutes after she left. I told him what had happened. I decided I had to try to eat something. I had dad feed me a container of Activia strawberry yogurt which I really enjoy. I managed to finish it completely and drink the rest of my Coke. I don’t recall what we had for supper that evening but somehow I managed to get it down.

As you can see after reading all of the above, this day had been coming a long time. The G-tube that was once a long way into my future now seems not only inevitable but imminent. Over the next several days I managed to eat more or less normally but it was still taking a very long time. I discovered that the tuna fish sandwiches were going down much easier than the bologna. A few days later I tried the bologna again but gave up after a few bites and switched back to tuna. I mentioned that some food goes down easier if there is bread with it. For example when swallowing bacon I have to chew it up with a piece of toast to get it to go down. So for lunch one day I tried eating the bologna in a sandwich. One of the problems with sandwiches is that because my disability causes all of my joints to stiffen, my mouth doesn’t open very far. We always have to smash it down very flat. Two slices of bologna and ordinary sandwich bread turned out to be just slightly too thick even when smashed as flat as possible. So I ended up eating it open faced. I was able to get it down but not as easy as the tuna.

 

Peyton Manning Is Right

It is currently April 30th as I’m composing this portion of the blog. It has taken me three days of writing to get here. I have had good days and bad days. The only food that I’ve had to give up on completely is another one of my favorites. Apart from steak which I gave up a couple of years ago perhaps my next favorite food except for pizza is chicken parmesan. And as Peyton Manning famously sings to the tune of the Nationwide Insurance jingle “Chicken parm you taste so good”. We usually get one that is in a TV dinner. A few days ago I had about four bites of one and up. I told dad to cross it off the list.

 

What to Do Next

Writing a blog is therapy for me. It helps put things in perspective. It gets things out of my system or off my chest or provides catharsis or gives me closure or any of those other psychological mumbo-jumbo terms. I think telling the story here has been a necessary step for me to get up the nerve to make a doctor’s appointment and see what my options are.

I’m not ready to schedule G-tube surgery because I am still eating. Although liquids are difficult to swallow I’m still swallowing them. Can a person live on Ensure alone? Are there other protein supplements or forms of liquid diet available? I had an ear ache recently and I think that was caused by Ensure that I swallowed funny that went up the eustachian tube from the back of my throat into my inner ear. A couple of times over the past few weeks when I was trying to swallow something liquid it would uncontrollably come out my nose and it wasn’t because somebody made me laugh.

Comedian George Carlin once said as a kid in school it was his mission to tell jokes and make food come out your nose. Carlin says says “Michael Davies once passed an entire cheese sandwich out his nostrils. Sister Annunciata thought it was a miracle. ’Come with me young man’ and she whisked him away to the principal. Apparently after a miracle you have to be debriefed by a priest.” That’s a joke funny enough to put food through your nose. I miss George Carlin and its fun to be able to quote a comedian and not have to apologize for quoting a drug wielding rapist like Bill Cosby.

So if swallowing ordinary liquid can give me an earache or make milk come out my nose without anyone telling a joke perhaps a liquid diet isn’t enough. Maybe it really is going to be a G-tube after all. But I won’t know that until I talk to a doctor and my current plan is to call him on Monday. I don’t know if I need a surgeon or a nutrition counselor or an ear nose and throat doctor or what I might need but he should be able to tell me.

 

Surgical Concerns

Anytime I’ve had to have general anesthetic it’s been a risk for me. I currently have 2 wisdom teeth that need to be surgically removed. One of them has cavities. The other is impacted at a 90 degree angle. Fortunately neither of them are currently giving me any problems but I put off doing anything about them because I didn’t want to risk surgery unless it was absolutely necessary. If I do have to have a G-tube there won’t be much doubt that I really need it. I can’t go without eating and I can’t risk aspirating food. If I’m going to risk the anesthetic for the G-tube I might as well have the teeth removed at the same time. And it’s not like I need them anymore 🙂 Also the irony has not escaped me that just as I get a reclining wheelchair that might save me from choking, I might not be eating anymore. I guess is not a total waste because I still get coughing spells from my industrial-strength spit and my sinus drainage.

The emotional strain of all of this has come right in the middle of a very strenuous time to begin with. It’s taken me 10 months to get my new wheelchair and nearly another month to get it working properly. In the middle of all of that, we purchased my late cousin’s wheelchair van because my old lift won’t safely lift the new wheelchair. It’s just been a lot of change with a lot of emotion tied to it. I said at the beginning that having a lifelong disability has been somewhat easier than having one that with onset in the middle of your active life. But as my disability has evolved, there have been moments like this that have been especially tough to swallow. Both figuratively and literally.

I will keep you posted when I know more from the doctor.

Overcoming Disability With a Magic Wand

It’s in my nature to compartmentalize things obsessively. That’s why I have a personal blog, a technology blog, a politics blog, a religion blog, a graphics blog, and entertainment blog rather than just one big blog with different categories. Sometimes life just doesn’t want to be carved up into pieces. In this personal blog I’ve been talking about my struggles with my ever-changing disability. But in my technology blog, I thought about my electronic gadgets that I build and adaptive equipment I’ve designed.

My latest technology blog entry tells the story of my latest assistive technology device built. It includes Bluetooth switch control for my iPhone and a universal IR remote for my TV, cable box, surroundsound, and Blu-ray player. It’s a project that has been in development nearly 3 years off and on. It includes much of the history of how I’ve operated devices like TV remotes and smart phones. Because it is very technical, it really belongs in the tech blog.

However it also explains the struggles I’ve had as my abilities have decreased over the years. That kind of story typically appears here in my personal life blog. So I guess I will just crosspost a link here for those of you who been following this blog.

Like all my stories, it’s extremely long-winded. It’s nearly 6000 words long but I think you’ll enjoy it if you have the time to read through it.
http://tech.cyborg5.com/?p=772

Yet Another Wheelchair Test Drive

Below is another video of a test drive I had yesterday of a loner wheelchair using a different kind of mouth control. It is a slightly smaller joystick using what is known as a bib mount. It hangs around your neck like a bib. Although it looks a little bit awkward, it is larger than it needs to be so that it can be fully adjustable. When I get my own we are going to trim it down to make it fit me better. Also note that I’m not using this wheelchair’s headrest because it is way too high. We just stuck a pillow behind my head and I deliberately left my head tilted back so that would rest firmly against the pillow. It made it a little bit difficult to see to drive. When I get the final product I will have a well fitted headrest and my head will be more upright.

As a result of this test, we are definitely going with some sort of bib mounted joystick. The advantage is that it will move with me. Throughout the day as I slip down inside my back brace, I actually get shorter throughout the day. If we mounted it on the armrest on the backrest we would be constantly readjusting it. I really like the solution much better than anything we’ve tried. Now I’m just waiting on some paperwork.

Test Driving a Wheelchair Using My Mouth

My wheelchair guy dropped by today with 2 different sample joysticks to try out. One was like a little button that you deflect with a finger. I could move it forward and backwards with my thumb and I can turn right but I had trouble turning left. Also I was concerned that if I hit a bump I would not be able to get my finger off of the button. Also my fingers are on the verge of giving out on me or I wouldn’t need a new wheelchair to begin with. The other joystick that he brought is a traditional looking joystick only very small and easy to push. I tried moving it was my mouth with him just holding the joystick up to me. He left the devices with us with our loaner wheelchair. This evening dad and I reached together a mount for the joystick using old brackets and other pieces of scrap metal we had lying around. It was all held together with C clamps as vice grips. Here is a video by test drive. Based on this success we are moving ahead and finally ordering the new wheelchair.

Chillin’ Out in a Test Drive

reclineA couple of days ago my wheelchair guy dropped off a demo of the type of wheelchair that I will be getting. This is not my new wheelchair. It’s just a loner for a test drive. I was not able to mount the control stick where I could use it but dad held the stick up to my hand and I was able to see how the stick works. I’m still not sure whether I will use my hand or my mouth to control it. One of the main reasons I wanted to sit in this wheelchair was to see how it reclines. This photo shows the chair in full reclined position. This is the position that might save my life. I get really bad coughing spells sometimes and the only way to get the gunk cleared is to lie down. If I would get a coughing spell where I was out somewhere it would be really bad. So this ability to recline might be an actual lifesaver. Even at home there have been some times where dad barely got me laid down in time. I know that this recline is far enough because while I was testing it I coughed up a tiny piece of White Castle hamburger that I didn’t realize was stuck in my throat. I’m still waiting on 2 other types of controls that I need to try out.

News about My Disability

In the link below is an article about a minor breakthrough in research about my kind of disease known as Spinal Muscular Atrophy Type II.

I want to give a little context about this article… I have SMA Type II and this study was with SMA Type I. The type I patients exhibit extremely weak muscles at birth and rarely reach their first birthday. It is basically an extremely severe version of what I have. Both types of SMA are caused by a problem with something called the SMN1 gene. The treatment described in this article is called gene therapy. Basically they give you a virus that is designed to insert a repaired version of the gene into your system. It basically infects you with a cure. They tested nine patients. Three of them got a low dose. Six of them got a midsized does. This was mostly just to test that the treatment was safe and did no harm. It wasn’t really to determine how effective the treatment was. However the results showed that the three patients that got the low dose did show some muscle improvement on a standardized test of infant muscle capability and that the six who got the midsized dose showed even more improvement. And none of them died nor did any of them have to go on a ventilator. Basically it’s an extremely preliminary indication that it worked. So the good news is that he may have found some extremely preliminary indications that this treatment can cure my disease. That’s the good news. The bad news is this is working on people who are basically newborns. In someone like me who have had the disease for 60 years, it’s done a crap load of damage to my body so the best I can hope for is that if the treatment ever became available down the road for Type II patients like me, the best I would hope for would be I wouldn’t get any worse. I’ve known for a long time that if they did come up with a treatment, that would be the case. Still it’s good news.

New Gene Therapy Results Announced at World Muscle Congress.

Being Thankful on my 60th Birthday

A little over six months ago I asked sister Carol if she would throw me a birthday party for my 60th birthday. It may seem strange to ask someone to throw you a party but 60 is a huge milestone for me. The party was today my birthday July 12 and there was a great success. I had lots of friends and family there. Some family I don’t see very often except perhaps at funerals so it was great to have everyone together for a happy occasion.

Although they thought they were there to celebrate this big milestone in my life I also had a secret hidden agenda. I did want to celebrate my birthday especially since the doctors and many other people didn’t think I would live very long when I was a child. But my secret reason for wanting the party was to thank everyone for being such a blessing in my life. My longevity has been sustained by my faith and my faith is sustained by the blessings that are the people who love and support me. So I wanted to thank them personally and that’s one of the main reasons I really wanted a party. This was my way to celebrate all they’ve done for me. So I took this opportunity at the birthday party to tell them so.

There were many friends and family who could not be there. I have people who are very special to me who live hundreds of miles away. That’s why I recorded this message at my party. It’s my thank you to all of them as well.

It’s not only family and my closest friends who deserve thanks but it’s also other people I’ve come in contact with online such as the friends I made while developing the POV-Ray Ray Tracing graphics software, people I’ve played games with online, and in recent years the people from the maker community who have helped me through programming and electronics projects. Thanks also to the people who have come up with creative ways to use my code that I’ve shared online. You’ve inspired me and supported me and encouraged me to keep contributing the best I can.

So whether you are blood relative, distant relative marriage twice removed in-law, dearest friend, or casual online acquaintance… this is my message to all of you in this video taken at my birthday party.

Here’s what God looks like to me.

As I said in the video… All the proof I need that God exists is the blessings that come through family and friends. That's why this photo of loved ones gathered for my 60th birthday are my image of God.

As I said in the video… All the proof I need that God exists is the blessings that come through family and friends. That’s why this photo of loved ones gathered for my 60th birthday are my image of God.

My First Wheelchair

In my last installment I talked about why I am shopping for a new wheelchair. I said I was going to take a look back at other wheelchairs I’ve had over the years.

Chris Young B.W.C. (Before Wheel Chair)

I never was able to walk or even crawl as an infant or toddler. I guess I didn’t toddle at all. In an attempt to crawl if you laid me on my stomach, I could work myself up on my elbows and hold my head up. As I started to write this I was originally going to say that I could never get my knees underneath me into a crawling position. Then I dug up some old home movies that did show me in a crawling position on my elbows and knees. At first I thought perhaps I had been placed in that position but a brief final clip before the film ran out showed me lying on my stomach with my legs stretched out flat and my upper body propped on my elbows. Then I proceeded to scoot my elbows backwards until I was up on my knees. However I don’t think I was ever able to really crawl. My recollection is that once propped up on my elbows I could sort of lunge forward and fall and actually move forward down a couple of inches. I don’t believe I was ever able to push with my legs in a crawling motion. To paraphrase Woody talking to Buzz Lightyear “That’s not crawling… It’s falling gracefully”. The old 8 mm movies did not show me actually crawling. You can see this video on YouTube further down in this blog. The “”not quite crawling” portion is at the very end of the clip. It was taken when I was one and a half years old at Christmas 1956.

Although I couldn’t find a picture of it, at one point they sat me in one of those spider walking things that you put babies in and they push them with their feet. I distinctly remember being in one so they must of put me in one at about age 2 or so. I can’t imagine that I would have a memory of being in it at an age in which you normally put a kid in one of those things. I could sort of rock back and forth and make it move an inch or so and I did push a tiny bit with my feet. However to make those really work, you have to be able to pick up feet to take a second step. I could not lift my legs once I had pushed. If I tried to drag them forward it would probably push me backwards again. I just remember that despite all of the coaching and “come on you can do it Chris” that I never was able to move the gadget more than an inch or two.

They also bought me a tricycle but I remember it was too big for me. My feet would not reach the pedals. I think they put wooden blocks on the pedals at one point but I still didn’t have sufficient strength in my legs to make it work beyond simply rocking back and forth and hoping to nudge it forward. Here is a video I spoke of earlier. It shows me sitting on that tricycle which apparently was a Christmas gift in 1956. Obviously it was too large for me at that age but even as I grew up I was never able to pedal it with my feet.

The video begins with images of me on the day of my baptism. Shows other images of me as a newborn. Then there is a sequence of me sitting in a baby chair playing pattycake I’m about one years old. I do not remember that chair. Then it continues with the Christmas 1956 sequences.

I also found this photo of me in a little red wagon so I suppose theoretically that was my first “wheel” chair. It looks as though the photo may have been the same Christmas as the tricycle so I guess the tricycle and the wagon are tied for the title of “first wheeled vehicle”.

wagon

I don’t have any memory of sitting in the wagon. I remember seeing it stored in the rafters of the garage many years later along with the previously mentioned tricycle. I remember the first time I saw the tricycle in the garage rafters and being surprised at how small it was. I remember it as being huge especially since it was too big for me.

Just about every photo I found of me before age 5 showed some adult holding me and that is my recollection as well. Before I got my first wheelchair I was simply carried everywhere. When not being carried I set in a small chair at the end of the coffee table in the living room. I do have vague memories of the rocking chair shown in the Christmas video. It had a music box and a small plunger on the runner so that when you rock back and forth it would push the plunger and play the music box. I recall that it was a little bit unstable and could tip over backwards if you are not careful. They put a little screw in one of the runners that we keep from rocking backwards too far. I guess that was sort of an early version of a wheelie bar.

After the rocking chair I spent a few years sitting in a cardboard kid’s chair which I distinctly remember. The only decent photo I found of it was this 1958 photo of me in an astronaut costume for Halloween.

cy1958a
Although I was still at the carrying around age and did not yet have wheelchair, we later tried to come up with creative costumes for me to wear on always that incorporated the wheelchair. Click here to see photos of the various ways we tried to build my wheelchair into Halloween costumes.

The cardboard chair was later replaced by a similar sized chair that was a swivel rocker with white leather or plastic upholstery and black trim. I did find some old photos of me sitting in that chair but they really didn’t show much of the chair so I didn’t bother to scan them. Since I was three years old in the previous photo, I must have gotten the white upholstered chair at about age 4.

I spent all day in those little chairs sitting at the end of the coffee table in the living room playing with toys. We also had a sandbox in the backyard that I would occasionally sit in and play with the sand. However for dinner I set in a high chair at our dining room table for many years. I have lots of memories sitting in that chair. I also distinctly remember having a recurring dream sitting in that chair and having it tip over sideways but I would always wake up before it hit the ground. I guess it’s the typical falling and waking up dreams that everyone has but for me it was always tied to the highchair. Here is a photo of me in the highchair on my fourth birthday. It was taken in our backyard here on Cossell Drive. The photo is looking south and it’s amazing because there are no trees, no big privacy fence, no screened in porch at the Tillery house to the south of us and no garage on our property either. There is a possibility the garage had been built by that time and simply as too far to the left to be seen in the photo. But our garage was not built at the same time as our house. We had it built later probably about this time. And get a load of the three-tier cake! Perhaps that was an indication of the idea that perhaps I wasn’t going to be around for very long.

highchair_1959_4th_birthday

The First Wheelchair

Sometime when I was five years old, probably before I started school, my parents purchased my first wheelchair. They encouraged me to try to push it with my arms. If I was on completely smooth ground like our tile floors in our house I could push it forward with my hands on the wheels. I could only move about an inch or so per push. Again it was almost like that “falling gracefully” situation. I would get a grip on the handrails connected to the wheels and then sort of lunge my upper body forward and if I was lucky my hands did not slip their grip. At four or five locations around the rim, there was a screw with a standoff or spacer connecting the hand rim to the wheel. If I could hook my thumb into one of those, I could keep a better grip but of course it only worked for one push out of about 10. I did try pushing on the sidewalk that was my front porch but even the crack in the sidewalk expansion joint was often an obstacle that was difficult to overcome. In the end I wasn’t able to push the chair any significant distance without getting myself exhausted. So I eventually gave up trying altogether.

I found a number of photos of me in that first wheelchair. This one of me fishing off of a dock at Lake Schaefer near Monticello Indiana. It is probably my favorite photo of me from that era. I just look like a having a ton of fun and I remember I was. This was before we owned the property on Cordry Lake which we didn’t get until 1965. We had friends who owned a home on Lake Schaefer and we spent a week vacation there in what was probably the summer of 1961 or 1962. I recently asked my dad did we go there twice or just once? He seemed to think it might’ve been twice.

1st_chair_Lake_Schaefer_driving_fishing

Here is another favorite photo from our trip to Lake Schaefer. It shows me driving a pontoon boat. I could actually drive it. It took every bit of my strength to turn the wheel but I could actually steer it. When we got the place on Cordry Lake and dad built our first pontoon boat there, I immediately wanted to try to drive it and for a few years was able to. Fortunately you only needed to turn the wheel slightly to keep it on course. It wasn’t like I tried to park it in the boat dock or do anything fancy. But I have very fond memories of the day that picture was taken and the times that I drove our boat on Cordry. I believe I was only able to move the wheel on the boat by pounding on the handles with my fist but that was enough to steer it.

1st_chair_Lake_Schaefer_driving_pontoon

1st_chair_Lake_Schaefer_yardAmong the more memorable features of that first wheelchair was that it had very hard plastic armrests. They were not padded as were the armrests on every other wheelchair I ever owned or saw in my entire life. The armrests were an ugly dark green with some sort of marbling texture to them which looked like green marble stone. I believe that the upholstery was also dark green. It can be seen in this color photo also from Lake Schaefer. You can click any of these photos for larger versions.

I also found some other interesting photos of me in that first wheelchair. Here are three photos from my first ever trip to the Indianapolis Motor Speedway. We sat outside the front stretch. These photos are looking south towards the first turn and you can see the scoring pylon in the distance of the first one. There were wooden folding chairs in that section of the stands. I was lightweight enough that dad could just balance my chair on the rear wheels and pull me up the steps to sit there after removing one of the chairs. I would guess this was 1961 but one of the photos says 1962 although I cannot tell if that was written on the photo at the time or if it was something that my mom added to the photo when she put them all in albums about 10 years ago.

1st_chair_Indy_grandstand 1st_chair_Indy_grandstand2

I’ve tried to research what year it was based on the most memorable part of the day. It was a qualification day because I remembered that at one point they announced there were no cars ready to attempt a qualification and that the track was available for open practice. I remember asking questions about what was the difference between qualification and practice. At some point everyone jumped up and looked towards the first turn. The PA announcer, probably the famous Tom Carnegie, reported “Race driver Norm Hall had hit the wall in the first turn.” As you might expect from a five or six-year-old I thought it was funny that it rhymed. So I began repeating it over and over in a singsong voice “Norm Hall hit the wall! Norm Hall hit the wall!” Eventually dad tried to explain to me it wasn’t anything to sing about.

I remember from there we went through the tunnel at gate seven to the infield and we were walking along the pavement behind the main grandstand just behind the control tower which in those days was not a pagoda. I was worried we would get run over by race cars. I had thought we were on the backstretch. Dad tried to explain to me that the backstretch was way far away. But I had seen people on the top of the infield grandstands looking over the edge as the cars went down the backstretch. He explained that from that high up you could see the backstretch but they were not looking straight down behind the grandstands as I had thought.

Here is a photo of us outside the fence of Gasoline Alley. You can see some bodywork from a car sitting there. Although the photo doesn’t show it, I remember seeing parts of a race car that had crashed. I don’t know if it’s true or not, but I concluded that it must’ve been the car in which Norm Hall had notoriously musically hit the wall. I then really understood that hitting the wall at the Indianapolis Motor Speedway Was not something for which a happy song was appropriate.

1st_chair_Indy_Gasoline_Alley1

I attended practice and qualifying many, many times over the years but did not attend the race until 1993. I recount the story of my first attendance at an actual race in an article I wrote for Indianapolis Monthly Magazine. Click here to read that article titled “A Race Fan’s First 500”.

This photo is probably the earliest one that I could find of me in my wheelchair. It is from Christmas 1960. It was taken at my Grandma Young’s house on Indian Lake Road. That’s my uncle Keith with the glasses, my dad, my mom, Grandma Young, and Susie the cat. If you look closely you will see I’m holding a book of riddles. There is a long story associated with that book that you can read in my faith blog here.

The Brace

In addition to getting a wheelchair at age 5, I also got my first back brace about that time. I can tell by looking at the Lake Schaefer fishing photo that I’m wearing the brace because you can see the upper edge of it pushing out my shirt. Here is the story behind the brace.

When I was first “diagnosed” and I put that in quotes because they really didn’t have a diagnosis for me, they said that I had Amytonia Congenita. That is Latin for congenital low muscle tone. Congenital basically means “since birth”. I always said it was as if they brought this kid into the doctor and said “What’s wrong with my son? He’s got weak muscles ever since he was born.” The doctors said “Oh yes… We have a name for that. It’s Amytonia Congenita”. To which they would ask “What does that mean?” And the reply was “It a Latin phrase meaning he’s had weak muscles since birth.” To which the reply is “no shit!” It’s not so much the diagnosis of a disease as it was a description of my symptoms.

Anyway this so-called diagnosis was made at a muscular dystrophy clinic at Riley Children’s Hospital. I was seen there by an orthopedic doctor named Dr. Carl Martz. The clinic was a mess. You would go about every two or three months. Everyone had the same appointment time which was generally about 8:30 AM and then you would sit there for hours and wait your turn while possibly 20 other kids would go in ahead of you. They didn’t even bother to schedule the appointments at 15 minute intervals.

You would be seen by a bunch of interns and residents who didn’t know what they were doing. They would try to evaluate you and then report to the attending physician who you would see for about 30 seconds. We eventually gave up on them because the whole thing was just a joke. We started seeing Dr. Martz directly in his office. He was a nice enough guy and probably knowledgeable as could be expected for the late 50s/early 60s but he really never did anything for me except put me in the brace.

The brace was actually a corset. It was made out of a heavy woven material and had metal stays in it. Most of the stays were somewhat flexible but in the back there were two very heavy metal bands that were supposed to hold my spine straight. We would purchase the corset not from a medical brace shop where all of my other handicap classmates purchased their leg braces. We got it from a woman’s corset shop called Spencer’s Corsets Shoppe. The woman who fitted me for the corset was named Mona Nevitt and she looked like a cliché image of a seamstress. She had cat’s-eye eyeglasses that hung around her neck on a chain along with a tape measure draped around her neck. She had painted on eyebrows and a big 60s hairdo. I did a Google search for Spencer’s Corsets and found this page showing images of women’s corsets from 1962.

Thankfully none of the images on that page look like what I wore but if you look at the one at the very bottom of the page on the lower left, the buckles on that corset were identical to the one that I wore.

When Dr. Martz retired, I did not sign up with another orthopedic doctor. In retrospect it was probably a mistake as my spine continued to get more and more curved. I should’ve had spinal fusion surgery sometime when I was a teenager. Most kids with Spinal Muscular Atrophy (which is my correct diagnosis) do get spinal fusion. It wasn’t until I developed congestive heart failure in my early 20s and I had to quit work that I went to a different doctor. I started seeing an internal medicine doctor named Dr. Daniel Boyd. He realized that the corset was restricting my breathing and he sent me to an orthopedic doctor who got me the current brace that I wear now. It’s basically a plastic body cast that runs from my chest/armpits all the way down to my waist.

Speaking of medical equipment that needs to be replaced, the same plastic race I’ve been wearing for nearly 40 years. We tried getting a replacement once but it fit me so poorly, I refuse to wear it. I leaned over once wearing it and it gave me the worst pain I’ve ever had in my life. And that’s even compared to the time my intestines ruptured and I needed emergency surgery. I screamed in pain “Get this damn thing off of me!” and I never wore it again. That was maybe 15 years ago. The original old original plastic brace that I continue to wear has cracks that have been patched. The Velcro straps and buckles have been replaced many times as has the foam inner-lining. It’s basically a timebomb which could fall apart any day but I’m not going to bother to replace it.

Final Thoughts

Anyway back to the wheelchairs. Here is one final photo of me in the first wheelchair. Thus my cousin Nancy sitting on my lap. She was born with spina bifida and uses a wheelchair herself. She did walk briefly with braces and crutches but it ended up she is more mobile in the wheelchair then she was with the braces. I don’t know when she switched to wheelchairs. I guess that’s her story to tell. This photo was dated November 22, 1962.

1st_chair_me_Nancy_11_22_1962

One other thing looking back over all these photos. Apparently I only had one good shirt. Either that or I had several similar striped shirts that were perhaps different colors that can’t be seen in the black-and-white photos. I take that back… I had at least 2 shirts. The white shirt and the bowtie from the Christmas photo also appeared in some other photos of me on the day of my First Communion. The First Communion story is one very different blog later.

In the next installment I will show you some photos of how we modified that first chair and some wheelchairs that I used when I first went to school.

Why I’m Shopping for a New Wheelchair

A number of big milestones are coming in my life. The biggest one is on July 12, 2015 I will celebrate my 60th birthday. I’ve asked my sister Carol to organize a big party because I want to acknowledge what a big milestone it is since I was not expected to live very long when I was a child. I want to celebrate how wrong I was and everyone else was when we thought I didn’t have many years left to me. However while celebrating the fact that I was wrong for so many years thinking that I didn’t have much time left, the reality is that my disability has gotten progressively worse even though it has progressed much more slowly than we thought that it might.It was a different milestone in my early 20s when I had to quit work because my disability was worse. It was a milestone when I could no longer type on a computer keyboard using my hands. It was a milestone when I had to adapt my wheelchair controls and start using a stick in my mouth to steady my hand on the joystick. I’m faced with another of those milestones in that I can no longer reliably use my current wheelchair controls. Therefore I’ve started shopping for a new wheelchair.

Such big milestones can be emotional times for me and the way I deal with those emotions is to reflect, look back on my history, and try to put things in context. So I thought I would chronicle my history of wheelchairs that I’ve owned. I’ve dug through old photo albums looking for pictures of me in my earlier wheelchairs. In the upcoming installments of my blog, I’m going to document what I found and explain how my wheelchair needs have evolved over the years.

Before we do that, let’s take a look at my current problems with this wheelchair and why it’s finally time to upgrade. I got my current wheelchair in December 1986 and many people are surprised that my chair has lasted this long. I’m not really that surprised because I don’t really put as many miles on the wheelchair as I did when I was younger. The main reason it’s time to upgrade is that is becoming more and more difficult for me to operate this chair is my disability gradually gets worse.

From the time I got my first power chair in 1965 when I was in fifth grade up until the early 1980s, I simply grabbed the control knob or joystick with my hand and pushed. But at some point my arm became too weak and unsteady. I was already using a wooden stick or dowel rod in my right hand to poke at the keys of my computer keyboard. I discovered that if I turn the stick around and put one end of it in my mouth, hold the other end in my right hand and also hold the joystick in my right hand, then I can steady that hand and drive my wheelchair. In effect my mouth moves the stick. The stick moves my right hand. My right hand moves the joystick and that moves the chair.

driving_position

Me In My Driving Position.

Above is a photo of the position I need to be in, in order to drive my chair. In order to get a good grip on the stick, I need my first and second fingers on top of the stick and my thumb needs to be underneath the stick. Also the first finger needs to be crossed over the second finger. More and more frequent that I need to have brought me up in that position. It’s not easy for him either. It takes him two hands to do it. One to hold my arm steady and the other one to hook up the fingers. Because his balance is a little bit unsteady he has to lean against the wheelchair to keep his balance while putting me in place.

Below is a brief YouTube video showing what I have to do to get into that position on my own. In order to get two fingers on top of the stick I have to start out with my entire hand over the stick. Then I have to figure a way to get the thumb tucked underneath. If my thumbnail is even a tiny bit long, sometimes he gets hung up on the stick and I can’t get my thumb into place. As you look at the video notice that the stick actually curves near my mouth because I’m putting so much strain on it. When the stick gets old, sometimes it feels like it’s about to break.

One recent innovation is that we put a piece of heat shrink tubing over the end of the stick so that when I hold it in my mouth it doesn’t get so soggy and chewed up. That way I don’t get splinters in my mouth and the stick should theoretically last longer. I’ve been chewing on that damn stick for over a decade and now just a few weeks before I’m going to end up quitting using it altogether, I figure out how to cover it up. Oh well.

One of the problems is that for many years I’ve not been able to reliably hold my head in position. I have to get it balanced just right and if I hit a bump or if I’m on uneven ground my head slips and hopefully I can let go of my stick and joystick and not go flying across the room. It is to the point where unless I’m on completely smooth and level ground, I just don’t drive myself. And I’ve not down to been able to drive my chair with any kind of coat, jacket, sweater or whatever because of the limits on my arm.

There are many alternative ways to drive a power wheelchair. The classic one that has been used by quadriplegics and other severely disabled people is known as the “sip-and-puff”. It’s a small plastic tube that you put in your mouth and you either slip or puff air and then out of the tube. It is so sensitive that you don’t really need to breathe into it. People who are on ventilators and pass no air in and out of their mouth use it all the time. Just the amount of air in your cheeks is sufficient to activate it.

There are four different “commands” that you can use with a sip-and-puff device. A soft sip, a hard sip, a soft puff, and a hard puff. Using different combinations of those signals you can drive a power wheelchair and do a variety of other things. An initial hard puff will enable the wheelchair to move forward, while a hard sip will stop the wheelchair. Conversely, an initial hard sip commands the wheelchair to move backward, while a hard puff will stop the wheelchair. A continuous soft sip or soft puff commands the wheelchair to move left or right respectively depending on how long the user blows into the tube”.

The problem with driving a chair that way is that you do not have proportional control. Using the joystick if you want to go slowly you only push the stick a little bit. To go faster push it further. Similarly pushing it at any angle adjust the relative speed of the left and right drive wheels so that you can turn at any radius. Using a non-proportional system can only turn the left and right motor off or on and forwards or backwards but cannot adjust the speed and cannot adjust the angle at which you are turning. The motion tends to be very jerky and is difficult to control especially in tight spaces. My very first power chair at a joystick knob but did not have proportional control. They are no fun once you’ve used a good proportional system.

So I’ve always been hesitant to switch to a different control system even though in some ways it would give me a little more freedom. I would have to strap my head into a headrest to keep it in a steady position so that I could always get the tube in my mouth. But I would be able to drive with a coat on. Drive over rough ground. Drive up and down reasonably sized ramps. It would actually make me much more independent.

My fear is that once I stopped using my right arm to control my wheelchair, it would atrophy like my left arm has done and would become completely useless. I use that right arm for other things. For many years I also used that arm and the stick to type on a keyboard like this.

me n computer

This 2000 photo shows me using a stick to type on a keyboard of my computer. I had been doing this since the early 1980s.

I would pop the keyboard up on an easel and poke at the keys. The date on that photo was May 2000 but it could be even older than that. I use a similar system all the way back to the early 1980s all the way back to the 8-bit days of CP/M. More on that another time.

For the past seven or eight years, I’ve used nothing but dictation software Dragon Naturally Speaking. However I still use my right hand and the stick to use my iPod touch and more recently my new android phone. I will do a complete blog article soon about how that works but here’s a quick photo.

stick_and_phone

Using my mouth stick to operate my new android phone. The special tip on the stick is made of conductive foam and is grounded so that the capacitive touch works.

I hold the stick in my mouth. A special tip with a thin red ground when pressed to the capacitive touchscreen on the phone activates it just like using your finger. A wooden stick by itself doesn’t work with capacitive touch. Although the ground wire is fastened to the aluminum bracket holding the phone, I also hold the wire in my hand which steadies the stick.

I never really thought about it before but when driving, my mouth stick steadies my hand. But when using the phone, my hands steadies the mouth stick. I also use the mouth stick to poke at the buttons on the TV remote although I don’t need my hand to steady the stick for that purpose.

The bottom line is that I’ve always feared that switching to an alternative control like a sip and puff even though it would make me more mobile, it would be the end of using my hands altogether and I would lose much more.

Even though my current wheelchair runs reasonably well, it should’ve been replaced a long time ago. There’s something wrong with the electronics that it leaks current even when shut off. That means the batteries will not hold a charge. I should be able to run around the neighborhood all day on a single charge. Since I only run around the house I should be able to go several days between charges but I cannot go more than one day without plugging it in.

I’ve always said that I hated to replace this chair and get one with a similar joystick when I knew that sometime soon I was going to need an alternative control system. I’m guessing for 15 or 20 years now I’ve been saying “Any day now I’m not going to be able to use that joystick anymore. I’m going to wait until then to get a new chair.”

I’ve especially had problems whenever I’ve been in the hospital or been in bed sick for many days. The first few days getting back in the wheelchair have been especially difficult. Generally it’s because the hospital pumped me full of IV fluid in my hand gets severely swollen and unusable. Fortunately each of those times I’ve bounced back.

Recently I’ve been having problems driving even without any other medical issues causing them. There been many days when I’ve not been able to get my hand into position to drive the chair. I especially have problems early in the day right after I get up. Even with my hand in position it’s hard to drive down the hall from my bedroom to the kitchen to eat lunch right after I get out of bed. Also late in the day when I’m very tired it’s been difficult to get my hand into position or even once it’s there to be able to drive. I’ve not driven outdoors even across smooth sidewalks or parking lots for many years. Friends and family either pushed me or they drive my chair by walking alongside and pushing the joystick.

At first you tell yourself “Well I’m just having a bad day.” The next day I prop that hand up into position and drive all over the place with ease. And then the next day I think “I may never be able to drive again.”

The straw that finally broke the proverbial camel’s back was at the Easter vigil service this year at St. Gabriel. It is a three hour long liturgy in which the people I’ve been teaching in RCIA class are finally baptized, confirmed, and received First Communion and are brought into the church as full members. Three hours is a long time for me to sit in one position and so last year I had asked one of the ushers named Ray Brooking to check in on me a couple of times throughout the service to make sure I was okay. I speculated that maybe my arm would slip or perhaps I would need help with something to get me comfortable. I did that again this year but I should have added one more request.

When it came time for the baptisms, everyone had to turn around and look at the back of the church where the baptismal fountain is. When that time came, I couldn’t get my hand into position to turn around and watch the baptisms. Fortunately none of the people in my RCIA class were being baptized. The baptisms were mostly kids or people from the Hispanic RCIA. The people from my class had already been baptized in some other Christian denomination and were merely making a profession of faith and receiving confirmation and First Eucharist. All of that took place at the front of the church where I could see it.

The usher did check in on me and I was okay but I should have planned ahead and said to him “If you don’t see me turn around for the baptisms, come and get me.” At the end of mass he pushed me out into the lobby and helped me call my dad. It was after 11 PM and I had been sitting still for over three hours during the service. I normally go to bed about 9:30 PM so it was no wonder I couldn’t drive.

Two weeks ago I met with a young man named Patrick Phillips from National Seating and Mobility. We talked about my needs and he’s recommended a new wheelchair. He has obtained the demo version of the wheelchair but he’s waiting to get some demo equipment for alternative controls.

Six wheeled captain’s chair style that I don’t like.

I guess I’m kind of old and set in my ways when it comes to wheelchairs. Many of the newer chairs have six wheels and the drive wheels are small and the center wheels on each side. One of the advantages to this older style is that it’s relatively easy to get the chair up and down a single step like a curb or a step into someone’s house. Not sure that you can do that with the newer six wheeled chairs. The seats on the newer chairs also look like a bucket seat out of a car or sort of like a captain’s chair. I don’t like that. I like the traditional wheelchair. Unfortunately those are getting harder to come by. The company that made my existing chair nearly 30 years ago is in trouble with the government and no longer sells wheelchairs. Apparently they were buying cheap parts from China. Then when they would break down they would take the broken parts and put them back on the shelf and try to sell them to the next unsuspecting customer.

Mr. Phillips did find an “old-fashioned rearwheel drive” wheelchair from Sunrise Medical. Here’s a photo of the one I will probably get. It is a Quickie S-6 Series from Sunrise Medical linked here.

The Quickie S-6 chair I’m considering.

If I get this model, it will not be camouflage colored like the photo. They make a color called “candy blue” but I like to think of it as “TARDIS blue” instead. It does however have 6 wheels however the two rear wheels are just sort of a wheelie bar to keep the chair from tipping over. It is still considered a “rear-wheel drive”.

Among my other health problems that are going to influence what I need in a new chair, my sinus problems and my weak lungs occasionally give me nasty coughing spells. The only way I can get beyond them is to lie down in bed. In fact I’m scared of going places where I wouldn’t have the capability of laying down in an emergency. Anytime I go somewhere I only go if I’m sure my lungs are in good shape. And I generally load up on Sudafed and Robitussin just to make sure I’m going to be okay.

One of the features available for these new chairs is to tilt back seat on about a 50 degree angle or alternatively to recline completely flat. Of course these advanced seats cost more money and are heavier. I’ve not made a final decision yet but I think we may need to have a reclining seat. I think that might be a feature that would potentially save my life so it’s probably going to be pretty important.

One of the first things Mr. Phillips said when I told him that I wanted some sort of alternative controls and that “worst-case scenario we do sip and puff”. He said that he very rarely uses sip and puff controls for his patients anymore. It is indeed a last alternative. I asked him if there was some sort of joystick I could use with my mouth and he said yes indeed. He showed me a video of himself driving a chair with a tiny joystick that is feather touch. He was operating it just using his lips and not moving his head or neck at all.

Here’s a video demonstrating the joystick although in this video is being used as a game controller and being reviewed for its ability to control video games. But I’m 99% sure it’s the same one that Mr. Phillips was showing me him demonstrate himself.

Here is another similar joystick actually being used to drive a wheelchair from Sunrise Medical

Here is another finger touch joystick that I found online that we might investigate. Although was demonstrated here mounted on a plate (which I don’t think I could use), the company that makes that joystick also has a way for you to hold little square piece in your hand. It even has a little plastic ring so you can wear it around your finger. If the other joystick doesn’t work we may try this.

ASL_636_edited

Anyway now I’m just in a waiting mode waiting for the guy together up samples of all of these alternative controls. He said that he might need to contact the distributor and have them send a representative to meet with us to demonstrate the stuff. That may take some time.

The remaining articles in this series could be an adapted version of an old Willie Nelson song. We would title it “To all the wheelchairs I’ve loved before.” We’re going to look back at some old photos of me in various wheelchairs using different controls. That’s all for now.

“Do you want to watch some football?” A Thanksgiving Parody

I was inspired to throw together this little parody today while watching football when I noticed how well the phrase “Do you want to watch some football?” fit the melody. I hope you had a great Thanksgiving and enjoy this little composition.
(Sing this parody to the tune of “Do you want to build a snowman?” from Disney’s animated feature “Frozen”)

Do you want to watch some football?
That’s all it’s on TV
My belly’s full of turkey now
So on the couch, is where I need to be
I used to be a Bears fan, but now I’m not
Their record’s the reason why.
Do you want to watch football?
If you’re not watching football
Bring me pie!

(Second verse)
Do you want to watch some football?
Second game will soon begin
Ol’ Romo has all day to throw
The poor defense can never get to him
He throws down it down 10 an interception, the Cowboys lose
At halftime I had more pie
Do you want to watch a football?
If you’re not watching football
Okay bye.

(third verse sing slowly and melancholy)
All alone still watching football
The third game’s about to start
My belly’s feels much better now
’cause I finally passed a great big fart
I don’t know what the score now
But I don’t care
The tryptophan made me high!
I’m still gonna watch more football
I can’t get enough of football
But no more pie!