My Vertical Life

I have spent the past ten months sitting. The sitting involves sitting in a wheelchair or sometimes in other places but for all of that time I have either been in a lying or a sitting position. As discussion turns to braces and to the possibility that I might get around on my legs, the first question is what happens to me when I stand up. It turns out, for reasons which will be clear in a paragraph or two, that this can be a real issue.

It turns out that there is a device which allows a paralyzed person to remain and even to work in a standing position. This device is called a standing frame and is shown in the picture. Basically the device stabilizes your knees within some C shaped cushions and then pushes on your butt to raise you to a standing position. There is a work surface where your arms are enabling you to work while standing.

My physical therapist was interested in putting me in one of these devices to make sure that nothing bad happened when I stood up. This is not a trivial concern. The other patient that she put in this device, a twenty-one-year-old with a higher level of injury, saw his blood pressure drop down to 60/40. This blood pressure could be considered quite dangerous and in many people would cause them to pass out. It turns out that the patient did relatively well, perhaps because his blood pressure has been running low since the accident.

My blood pressure runs a lot higher. In fact my blood pressure tends to run too high and I take drugs to decrease. In addition, because the level of my injury is lower, a significantly smaller portion of my body is abnormal and therefore the expected effects on blood pressure are smaller. In fact, when I was put into the standing frame my blood pressure did not significantly change.

It turns out that using a standing frame can be a good thing for someone with a spinal cord injury. Merely placing weight on the bones will diminish calcium loss, a common problem spinal injury since the legs are not bearing weight. There are also supposed to be good effects on the bowel and other parts of the body although I find it difficult to explain exactly why these should be seen.

After trying it in physical therapy, I decided it was appropriate to get a standing frame and start using it on a regular basis. I bought one that has the ability to wheel it around using your hands giving you mobility in the standing position.

A Weekend on the Water

For a long time we have been wondering about my use of a canoe or a kayak. My arms are plenty strong but I am uncertain about the strength of my trunk and how much of that strength would be required to move a kayak. We have also been very concerned about the problem of how to get into the boat. I thought long and hard about the issue of kayak versus canoe. Kayaks are stable, put your body close to the water rather than on a seat. Kayaks offer the disadvantage of, for most designs, having a relatively small hole to get your legs into complicating the problem of getting into the boat. Normally you would sit on the seats of a canoe which would be extremely awkward. If you could sit on some cushions in the bottom of the canoe, the problem of getting into the boat would be considerably simpler.

This weekend we went camping with some friends at a house on the waterfront on Whidbey

Island. In addition to many other amenities, the house had a couple of kayaks. One was a conventional single person kayak with a relatively small hole. The other was a two-person kayak designed to be sat upon. This design so many of the issues of getting into the boat. with seven able-bodied people it was easy enough to roll the wheelchair down to the beach and have a few people left me into the kayak. After that with some more help the kayak was pulled into the water and launched. it was not an elegant solution and not necessarily one that would be easy to repeat but it worked.

Once in the water I discovered that paddling a kayak was very easy. In fact, I made the mistake of insisting that my wife stay in the back of the boat to enable her to steer if I had a hard time paddling. This was a mistake because Verna is not very good at steering boats, she almost never rode in the stern before my accident. and throughout our trip she continually complained about an inability to steer, forcing me to do much of the steering from the front.

One problem that we discovered with this sit up on kayak is that while the craft is self bailing it is also very wet. The good news is that all of the cold water tended to fall on my legs and specifically the parts of my legs that are not sensitive to cold (or anything else). The bad news is it meant that I was losing a lot of heat without necessarily feeling. The other good news is that it was a sunny day and for Seattle relatively warm. One thing that I learned is that hypothermia is a problem and that the self bailing sit on kayak is probably not the best solution.

Kayaking was extremely successful and I am now in the process of looking for more reproducible ways to get into a canoe or a kayak without having a lot of people to help.

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.