The W Word

The W word is walk. Lying in a hospital bed looking at my useless, motionless and senseless legs I wondered whether it was possible to even contemplate the idea that I might walk in some way shape or form. I was told that most of the change in the status of a spinal cord injury happened in the first three months. In the first three months there were few changes in the status of my legs. At the end of that time I basically had decided that I would never regain any functionality in my legs and that I would never walk again.

Walk became the W word, the word that you dared not utter or even contemplate. There was a doctor on the ward whose gait was clearly abnormal. I asked him why and he told me that he too had a spinal cord injury, very severe, and had been confined to a wheelchair. Eventually he regained sufficient function to walk. It was not a normal walk and it may well have involved a great deal of effort and pain. He asked me whether it was a good idea to tell the patients that he had similar injuries. I considered the question carefully and I never gave him an answer. I knew that most of the people on that ward would never recover significant function. The odds were against them and also against me. Is it a good idea to hold out the possibility of recovery knowing how long the odds are. I never gave him an answer and to this day I cannot say what a good answer is.

For a long time walk remained a word that I did not consider. Three or four months ago, as I have outlined in other entries, I began to regained some function. My legs are still very weak and most of the movement that I have is really not muscles in the leg but in the abdomen. I have no feeling and no movement below the level of the knee. However my therapist believes that there is sufficient movement to try to teach me, using a large number of braces, crutches and other aides to be able to walk on my own.

She said that she has over a period of ten years taught seven people with similar injuries to mine how to walk under these conditions. Only one is still walking. The others all decided that walking with my level of injury is a huge amount of work compared to the ease of getting around in a wheelchair. I know that there will be a lot of work, probably a lot of pain, and in the end getting around in a wheelchair will be easier in the short term and maybe the long term. This does not mean that I will not give walking all that I have.

Next week I will be measured for braces. Tomorrow I will go into a group called Pushing Boundaries to start an exercise program. I will say more about Pushing Boundaries in a later post. I have no idea what the therapy and training with braces will involve. I do not even know how long it will take to build the braces and when I can start. The only thing I do know is that walk is now a word that I'm willing to utter and willing to attempt.

A Bicycle for Brother Steven - Plan B (4 of ?)

The first model of the bicycle that I built works very well in the sense that I was able to pedal the machine using only the power of my legs. One significant problem with the first design is that the issues were bolted directly to the pedals. Aside from the fact that in the early designs issues tended to slip, the major issue is that it required me to get my feet into the shoes while they were bolted to a set of pedals which could move. Another issue is that the pedals are relatively far down and difficult to reach.

I decided that a proper solution would be to first put on a pair of shoes and that somehow attach the shoes to the pedals. My first thought was that by cycles had clip on shoes that would clip on a special set of pedals. I went to a bicycle store and asked to see these clip ons. What I soon discovered is that it took a huge amount of force to get the shoe onto the pedal. It was very clear that it would take an even greater amount of force to get the shoe off. As I sat in the bicycle store waiting for someone to help me with shoes I was suddenly struck with the fact that I was looking at the wrong solution to my problem. The forces that I can generate with my legs are very weak. Bicyclists are interested in a strong attachment for a strong leg that will keep the leg attached firmly even when strong forces are applied. It suddenly occurred to me that the correct solution was a weak attachment which was easy to make and easy to break.

Two solutions came immediately to mind: Velcro and magnets. Both solutions are way cheaper that whatever I could get at the bicycle store. I laid my hands on some industrial Velcro and a couple of large magnets. For either solution I needed a flat plate on the bottom of the shoe. I grabbed a tube of Shoe Goo and glued a metal plate on the sole of a new pair of shoes. Again the shoes were chosen to Velcro closed making it easy to get them on and off of my feet.

I took the pedals that came with the child's bicycle crank and bolted a fairly thick metal plate to the top with other plates making up the bottom. The idea was that if Velcro work properly it would simply be necessary to glue Velcro onto the plate and attached the shoes in that manner. If Velcro proved unsatisfactory, the plate would provide an excellent service with a magnet to stick to.

It turns out that the Velcro is a good strength for holding my feet onto the pedals. The only real problem is that it is still difficult to place my feet properly on a bicycle where the pedals can move – especially when the device that I have built to keep my leg from flopping to the side tends to cause the pedal to flip over. The next picture shows my current solution with the pedals being held up right and somewhat stationary using a couple of bungee cords. With this arrangement I can with some difficulty get on and off the bicycle without requesting any able-bodied help.

The Floor

Since my accident I have only been on the floor four times and each of those involved a spill caused by a bad transfer. In other words, every time I have been on the floor it was an unindented accident and my only real wish was to get back into my chair as quickly as possible.

For a long time I have thought that it might be nice to be able to get onto the floor and back into the chair - especially when there is work that is best accomplished from the floor.

The first problem in this is getting around once you are on the floor. It did not take me long to decide that a mechanics creeper was the best solution to this problem. After that there was the issue of how to get to the floor and to return the chair. In my exercise class one of the things that I did was to lift weights with a grip similar to that used in a pull up. I had no problem lifting 40 pounds but when I attempted to lift fifty I found that I was pulled up out of my chair because my body weight less than the weight that I was trying to lift. This suggested to me that I could use the same maneuver, a pull up, to get up out of the chair and to return to the chair from the floor . I would, of course, require some help positioning the chair after I did the pull up.

because we already had a Hoyer lift, it was an easy matter to fashion a pull up bar from a piece of pipe, some insulating foam for padding, and a couple of carbiners. The picture shows me on the mechanics creeper immediately after I have done a pull up to get off of my chair and then lowered myself onto the creeper. While I was doing this, my wife remove the chair and pushed the creeper in its place.

Having done this once I came to the conclusion that the Hoyer lift was a bad plan for getting out of the chair. Even though the wheels on the Hoyer will lock, the device tends to slip when you do a pull up. My conclusion is that the next generation will involve a bar are in a doorway which will be unable to slip. The other conclusion is that we did not have to change the height of the bar at any point during the process of getting onto the floor or back into the chair. This suggests that a single fixed bar, or rather a single fixed set of holders for a bar which can be removed, is all that is needed to facilitate smoothly getting onto and off of the floor. While the mechanics creeper is not as nice as the wheelchair for getting around, it is unlikely that most jobs will involve more than moving to the job, performing the work and moving back to the chair.

Inaccessible

The place where I work has a conference room which is used for seminars and conferences. The room has a set of three wide steps at the back, the usual way to get in , and a hall with a ramp providing access to the main floor. It is very common to have coffee and pastries or for longer meetings, breakfast and lunches. The food is placed on a table approximately as wide as the upper step (reachable from another room at the back). This means the only way to get at the contents of the table is to go down to the second step, a place reachable neither from the back of the room nor the bottom. One picture is worth a thousand words here.

I complained to management and they say the situation will soon be corrected

A Bicycle for Brother Steven (3 of ?)

Success -

Until a few weeks ago I was unable to use the bicycle effectively. While I was able to move the flywheel, I lacked the strength to go over the top and make a complete cycle. After major efforts finding the right position of the bicycle, the right position of my legs (slouching to bring in more abdominal muscles) and the right way to start, a few pushes on the left, weaker, leg I finally got the bicycle to move under my own power.

The advantage of a bicycle over the earlier motor driven device is that I know that the effort comes from me whereas with any kind of a motor it is very hard to separate what your legs are doing from what is contributed by the motor.

Also, unlike the pool which has limited hours and represents a major expedition, cycling may be started at any time with limited effort and may be performed while watching television, thus combining entertainment and exercise.

Skipper Bob

I went sailing today for the first time since my injury. There is an organization in Seattle, footloose sailing Association which was founded to take people with handicaps sailing. They have about a half dozen boats on one of the marinas on lake Washington. Every other Saturday during the summer they take people with disabilities sailing. I have not been in a sailboat or any other kind of small craft since my injury and I was very concerned about how I would get into the boat and what would happen once I got.

We went down there and were met by a nice group of people and assigned to a boat captained by a man named Bob. Bob is one of the founding members of the organization and has been in a wheelchair for twenty-six years. He was injured diving into the Yakima River and, since his friends did not notice that he was injured and in trouble after the dive, he is very lucky to be alive. It just happened that a fisherman downstream saw him struggling and pulled him out of the river with a broken neck.

Bob has a low cervical injury and what that means is that he has some, but not complete use of his arms. Of course, he has no use of his legs. In practice this means that he can grip things with several fingers but does not have complete use of his hands. His arms themselves are relatively strong.

Bob is the captain of the boat. The boat is a standard sailboat with almost no special provisions for handicapped people. There is an interesting arrangement on the mainsail, one that I had not seen before, where the sail is zipped into a linear bag against the mast that is constructed by building a zipper into the cloth of the sale itself. As the halyard is raised the sale unzips itself and becomes a standard mainsail. As the halyard is lowered, there is a small bag moves down the zipper stopping the sale in and zipping the bags closed. The jib has a standard arrangement where it is stowed I by rolling around the fore stay. As a result of these two arrangements there is a lot less work in raising and lowering the sails and no work is required to stow them.

Getting onto the boat is a challenge. The boats rail is at least 10 inches lower than the height of my chair, a considerable distance. Bob is of course used to making the transfer from his chair but I am not. I request that a few pillows be placed on the rail raising its height and adding padding against any mistakes I might make. It turns out that getting down is fairly easy but I will later require help to get back up into my chair. I never did see how Bob manages to accomplish this task.

We had seven people in the boat, to able-bodied assistants from the club, skipper Bob, a woman and her very severely disabled daughter. I believe that the daughter must have had a developmental disability because she never spoke on the entire trip. We fired up the motor and motored into the lake. Once outside the breakwater we turned into the wind and raised the sails. I have located myself on one side of the stern with skipper Bob on the other. after we were underway I took over sailing and sailed the boat most of the way across the lake. I had little trouble handling the boat except that the tiller was loose and fairly heavy and required me to lean too far forward in order to effectively run it so after a while I gave that task to Verna who was sitting further forward and had better leverage on the tiller.

On the way back Bob ran the boat for a while. When he adjusted the lines, for example pulling in the jib, he would fall in the line and then hold it in his teeth well he reached out to pull in some more. He was very efficient at this process and had no problems controlling the line.

Bob has been sailing this boat for over twenty years. He can get around the boat easily, I am not quite certain how he manages it. Which is arm weakness I would certainly have a great deal of difficulty getting around. He is able to get down to the cabin and sleep there, a task that I certainly could not accomplish.

Back at the dock I was faced with the problem of crossing from one side of the cockpit to the other. After considering several options, I ended up reaching up and pulling myself up on the boom and then swinging across. On the way out I was able to get onto a pillow on the rail but after contemplating the distance I would have to rise to get into the wheelchair I ended up asking for assistance from a couple of able-bodied men who were able to easily raise me onto my chair.

We will return to footloose sailing hopefully on a sunnier day.

Carrying Things

One thing you rapidly discover is how difficult it is to carry things in a wheelchair. Both hands are required to push the chair. Attempting to push with one hand moves the chair in a circle and pushing with something in your hand is virtually impossible. Most things you wish to carry eventually get places in your lap. This is a barely adequate solution. Frequently, things will fall off and in the worst case break.

I have come up with a number of solutions. On the back of my chair I carry a back back strapped to the arms. While this is not very convenient to get at, it is a good place to put things which will be carried for hours, days or weeks.

Under the seat I have another pouch, perhaps more difficult to get at but fairly large and well protected. I use this for carrying things I want to be with me for a long time as well as things I need to carry during long, uneven rolls when the odds of falling off my lap are high.

One useful thing that I made is a simple tray bolted between two pieces of plastic pipe that fit well over the arms of the chair. This gives me significant space to carry fairly large items in a space significantly larger, flatter and more stable that a lap. I can, for example, clear a table dishes by stacking then on the tray.