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.
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.
A 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.
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.
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.
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”.
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.
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.
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.
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.
Among 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.
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.
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”.
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.
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.
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.
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.
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.
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.
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.
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.
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.