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.
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.
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.
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.
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.
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.
Chris: You never cease in amazing and enthusing me with your blog posts. Have been a bit hung up myself so not much direct contact with you but want you to know you are always in my thoughts and prayers.
Certainly wish you the best in your quest for obtaining the best wheelchair available for your needs.
Hi Chris, this was a few months ago and was wondering how you got on with the different controls? Will you be doing a follow up post on your new setup? This has been extremely interesting to follow and I wish you all the best.
It’s been a slow process but we are finally making some progress. We’re going with the bib mount joystick that I tried out in a recent video posted here. I’ve been evaluated by physical therapist who has written a report. On Monday I take all the paperwork to my primary care physician where he will sign 15 pages worth of forms. I will then hand-deliver those to the wheelchair vendor on the way home from the doctor. I’m told that Medicaid approval could come within seven days after that. Once that is approved they can order the equipment that it will take two or three weeks. Final Medicare approval might take as long as a month but they don’t need that to start the order. Meanwhile I’ve been building a Bluetooth device so that I can access my iPhone by just pushing a couple of buttons. I will be posting an article about that on my technology blog later today. I will crosspost a link on this blog. I guess I tend to compartmentalize things too much 🙂 I have five or six different blogs.