Look Out Sarah Conner

Pushing Boundaries has a machine which moves your legs as they would if you were walking. For me this machine can do some important things in terms of stretching contracted from long disuse and even longer sitting. It can also train the muscles in some of the movements they will need to use as I attempt to relearn some form of walking.
I have seen this machine used with people with cervical injuries who are struggling to recover use of their arms and have no hope of effective use of their legs and wonder why it is being used. Even for me, I wonder about the motions of my knee and foot. I currently have almost no ability to move my  knee on my own.
You start by putting on a harness which attaches around your chest and under the groin. You will hang in the harness while the straps are attached to the thighs, calves and feet. It took about 20 minutes to find the propper adjustments of a large collection of straps and braces. Presumably the next time I use the device all of these measurements will simply be dialed in.

Once all the straps are in place, the machine begins to move your legs, slowly at first and then in larger motions. Once the motion is going and well tolerated you are lowered onto the treadmill. You are now walking or more properly the machine is walking for you. I remember a comment from one of the spinal cord injury forums not about this device but about an exoskeleton which would allow you to walk independently using their motors. One person commented "I don't want to walk around looking like I am stalking Sarah Connor".

After 15 minutes of "walking" they tested the strength of my legs. With the right I was able to generate about 20 NM and about a third of that with the left flexor. Extension ( moving the leg down) was much weaker. When I asked what these numbers meant, Erin hemmed and hawed and eventually said that the company says you need about 40 NM to walk. I could say on the right that the glass is either half full or half empty.

Casting for Braces

The first step in making braces is to make a cast of the legs and hips allowing a manufacturer to make pieces that fit your body well. My orthotist did the casting in two steps. First in the facilities of her office she cast my legs.

She sheaths the legs in cloth tubes and lays a piece of surgical tubing on top. Later she will use the tubing as a path to cut the cast off the leg. The she takes rolls of plaster impregnated cloth, dumps it in a bucket to get it soaked and wraps them around the leg in the same manner as a classic cast is made (In modern times fiberglass which is lighter and probably stronger would be used for a cast designed to remain for more than a few minutes.) After the cast dries, she takes a cast saw and cuts along the line if the surgical tubing. Using a special spreader tool she spreads the crack and removes the cast.

For the casting of the hips, she wanted a lower mat so I could sit with my knees on the floor and my body bent over the mat. We went to the school of orthotics at the university. I was placed in a position on the mat and my entire trunk was placed in a couple of layers of cloth tubing. After that layers of plaster were put on my back (not wrapped around the body. In the end the cloth tubing was cut off.

I have no idea how long the braces will take to make, what they will look like when they are done or, most important, what it will feel like to walk. I am very interested in how much work it will take to walk (everyone says a lot) and how difficult it will be to balance - I suppose there is little to do but wait patiently,

Before You Can Walk

I did two things at Pushing Boundaries that I have not been able to do after my accident. The first was to get onto and more importantly to get off of the floor. The second was to crawl across the room.

The seat on a wheelchair is about 20 inches off of the floor. This distance can be very daunting when you consider trying to get out of the chair and onto the floor or, more importantly, if you were to find yourself on the floor consider how to get back into the chair. I have done this a couple of times by positioning a bar that I can use to do a pull up which raises my body to about the right height. At Pushing Boundaries my instructor had me get on the floor merely by putting my feet on the floor and then attempting to lower myself from the wheelchair. The results were not pretty and would probably consist be considered to be a fall. Once on the floor, actually on a gym mat, I crawled the length of the room but I will talk more about that in a second. After crawling I was faced with the problem of how to get back into the chair. The instructor suggested placing one hand on the chair and another on one of the metal arms and trying to push myself up onto the seat. This did not look like it was going to work very well. Looking around I found a heavy, padded bench a little bit lower than the wheelchair. I have the instructor move the bench so that the wheelchair and the bench for a 90° angle allowing me to place myself in the corner and have solid support for each and to raise my body to the height of the chair. It was actually very easy.

The next issue was crawling. It may be the only time outside of the pool that I can move with the assistance of my legs. The idea is to get up in my hands and knees and then move by unweighting one leg and moving it forward, the repositioning the arms and repeating. Sort of like what a baby does but way harder. The main issue is that the legs and hips are not terribly stable. It takes a lot of work on the part of the arms just to maintain balance. In moving the leg forward, it it important to work against the natural tendency for both legs to move toward the center. For a stable platform, the trick is to keep the knees far enough apart to form a stable platform. Every few feet it was too much work and I had to collapse to one side and rest. I fount that it was less work to lean on my elbows rather than keep my arms fully extended. It took about 30 minutes to crawl about 40 feet down the mat and get back to the chair with many rests in between.

Braces

I used braces for the first time a few days ago. I had met with my orthotist earlier and we agreed to meet with my physical therapist to try some loaner braces. We met later with the physical therapist in the gym at Harborview hospital. There are two kinds of braces that we were considering. KAFO which stands for knee ankle foot straps onto your leg whereas RGO is more rigid and includes a strap on your back. The orthotist brought a loaner pair of KAFO braces. The only RGO brace that she brought was designed for a small child. We strapped on the braces and move to a set of parallel bars.

The braces have two modes, in one mode they knee swings freely allowing you to sit in a wheelchair, in the other mode the knees are locked and rigid. To stand up you need to put your legs straight out, lock the knees and then somehow get to a standing position with your body over your feet. The parallel bars help a lot but it is still not very easy.

As you can see there are tricks to standing up. Once standing the trick is to position your body over the legs which requires a lot of difficult movement in a back with a lot of hardware.

In the end both the orthotist and the physical therapist thought in view of my back I would be better off with the more rigid RGO braces (the kind I didn't try). It will take a couple of weeks to meet the orthotist for casting and a few weeks more to make the brace.

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.