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.