Failure
The new physio routine has me walking pushing the wheelchair as a kind of rolling walker for 10 minutes uphill, time enough to build my strength and stamina before my legs run out of energy. I switch to the wheelchair from there.
The walk strains the legs pretty hard and I can feel the tension in my ass telling me that the workout is working out.
The first couple of walks were… difficult. My legs couldn’t recover and it was a full day before they returned to their pre-workout state. By the end of the week the recovery was down to a couple of hours. It is too early to say whether this is progress, but it is change at least. The distance I can reach before the legs begin to disintegrate has not yet improved, but I will keep working toward my physio’s arrival.
3 weeks to go…
Another series of walks and I can feel myself getting stronger. My ass and thighs ache protestingly but that also tells me it’s working. Well, it’s kind of working. The first 12 minutes are becoming increasingly manageable, the whole 12 minutes are up a steep hill, and now I’m not needing to slow down, I can get all the way at nearly maximum walking speed. Those first 10 minutes I’m becoming increasingly capable, even confident.
But that 12th minute gives way to the 13th and that steep deterioration still arrives right on time.
I’m not giving up hope, and I’m not giving up. I will continue to work my ass off and we are only on week 2, we’ve plenty of time yet.
2 weeks to go…
Improvement. Suddenly this week I can go just a little further before my legs become a sad trombone. It isn’t a lot further, maybe a hundred metres but the difference is noticeable.
Maybe the physio was right. Maybe there is hope.
1 week to go…
The progress I had seen has faltered. This week the extra hundred or so metres are again beyond my maximum range. By the time I reach that final stretch my legs are wet sand and I take my seat in my chair with indicative velocity.
My physio gives me one final series of tests and my strength and balance are eyebrow raisingly improved. The physio has me stand on one leg and wobble the other in the air, an exercise he assured me isn’t some kind of TikTok trend, and we find that I can do so for 50 seconds before I start to destabilise.
But the distance I can travel remains at the 12 minute mark, somewhere around a kilometre.
My rapidly improving strength and balance mean that the problem the physiotherapy is solving is one of decompensation, where the muscles have weakened from the reduced use. We’re seeing rapid improvement because the muscles are growing quickly.
The distance is a different problem.
That my muscles are strong through the walk and failing steeply after 12 minutes means that the problem is more likely demyelination. The demyelinated nerves are leeching potassium ions and that’s reaching a threshold where the signal is failing too frequently to maintain the muscle contractions and the legs weaken. No amount of exercise is going to remyelinate the nerves. There’s some possibility of remyelinaton over time and the oxygenation from the exercise will help that process, but at this point two years on from the relapse I think it increasingly unlikely.
So our efforts have failed. And I’m oddly enough ok with that.
The Rocinante is my new ship and I’m enthusiastically her pilot. While my legs might fail me after 10 minutes or so, The Roci has my back, and she’ll be my legs for as long as I need.
Honestly of all the symptoms I’ve experienced my poor mobility is one I can happily live with. It gave me muscles, it gave me The Roci, it gave me a target to strive for.