For years I’ve been asked whether I’ve ‘got the muscles working again’, ‘can I move my legs’ or ‘can I brace my knees’? I understand people’s desire to to see and hear of signs that I’m overcoming the paralysis, after all is that not the task in hand? Such questions, however, rather miss the point as to what we are really setting out to achieve. This year all that has changed. People have stopped asking questions and instead have been noticing the differences; yes in how I move my legs and move around in general, but more importantly, noticing the changes in the shape and form of my body.
I was in the pub on New Year’s Eve and a friend of mine told me I must be proud of myself for what I’ve achieved. She pointed out that my neck and shoulders now looked liked everyone else’s where before they weren’t normal with my head sunk down into the body. Not only had she noticed the structural change, but appreciated that such structural improvement, way above the level of paralysis, was something to be proud of.
The following day an old member of my bodywork team came to visit. I was squatting on a stool and leaning on my knees. “Look at you!” she said. It was not a position easily, or comfortably, obtainable for a true paraplegic. It takes sufficient pelvic structure, and capacity in the trunk, together with structure in the knees and ankles to sit like that. In one glance she appreciated the improvements that had taken place. A couple of months later when back in Dorking, my home town, a friend suggested, in exclamation, that I’d been body building! I’ve been body building for years, but not in the sense of pumping iron. All those years of work are really coming to fruition with the structural changes resulting in a greatly expanded chest, broader shoulder girdle and muscular form that reflects the improved inner capacity, although any muscle bulk is incidental. Such comments have been the theme for the year and finally I can successfully promote ABR Therapy as a way of building structural improvements and not as a means to get the paralysed muscles working again.
Getting the muscles working again is, of course, the ultimate goal. Walking will never be possible without the use of the muscles in the legs and although walking remains a distant dream and not in the forefront of my imagination, I haven’t totally given up on the possibility. Structural improvements, however, are what we work upon. They are the achievable goals. Use of the muscles is dependent upon a nerve pathway from the brain, that which is damaged in the spinal cord, and there is nothing I can do to directly address that. Scientists have been working on that very issue for decades with little or no success. But what if we could get the muscles going again; wouldn’t that solve the problem I hear you say. Well, it would be like taking a wreck of a car with worn out wheel bearings, slack ball joints, broken suspension springs, cracked chassis, leaking brake seals and rusted through exhaust pipe and thinking that getting the engine running will sort the car out.
The car analogy is exactly the scenario you have with scientists attempts to turn paraplegics into the bionic man. Julie Hill was the first to go down that road. They quite literally wired her muscles up to electric stimulation, via a computer, and although they never got her walking she did power a recumbent cycle with her legs. I happened to see her at a charity event at the time she was pursuing that approach. It was a cross country event where we the wheelchair users had a team of people dragging us around a hill (I don’t do that sort of thing any more, but it was great fun at the time). Julie’s lower legs, ankles and feet were so swollen that she strapped them, barefooted, to her wheelchair footplate. They were too swollen to put shoes on! I can only imagine that the abuse of shocking muscles into action in a structurally deficient body was more than her legs could bear. Not only was this experiment celebrated in a documentary on national television, some years later it was made into a film starring Caroline Quentin. I don’t knock Julie Hill for giving it a go or anyone involve for their quest to improve the lives of paraplegics. Personally, however, I would run a mile (metaphorically speaking) if those scientists came anywhere near me.
Conventional rehabilitation always seems to involve forcing the body into a standing position and working on what little muscle capacity remains. We work at rebuilding the underlying structure, all that is normally considered passive; the inner volume, joint capsules, ligamentous structures, skin and bone etc. In this way we recreate a structural framework that is capable of making best use of what little neurological capacity may remain. I am still totally paralysed below the knee and yet there has been substantial improvement in the structure of my ankles and feet, which is enormously beneficial, showing the importance of this work even if there is no hope for neurological improvement. From the waist down to the knees I have regained a great deal of use of my body, as a reflection of the structural improvements.
My old landlord in Brockham was sixty when I first knew him. He was arthritic then, the structure of his body abused by a hard working life, and he was still logging and fencing. He’s now in his early eighties and although he still tends his veg patch and his chickens and displays his collection of old tools at shows, he does much of it from a mobility scooter these days. He said to me, “It’s a grand life as long as you don’t get weak”. Muscles give us power, but it’s structure that gives us strength.
Spinalroots 