I'm just past the 4 month mark post HSCT. I feel progress in different ways. I have more days of decent typing dexterity, straighter walking and the all important and scientific study measuring how much of the bottom of my feet I can reach with my sponge in the shower... I bet you're all a bit surprised I'm capable of scientific experiments and about twice as surprised I use an exfoliator in the shower...Both are true.
Most days it's impossible to hide that something is amiss with my walking but I think I'm handling it better. Stairs continue to baffle me and there's no disguising I need to take them slow. If there's more than 2-3 I need a railing to get down safely. I have recently discovered peace in using a cane in public not only physically to support the inevitable missteps but psychologically to obviate my innate instinct to try with all my might to appear that I'm not defective. When I use a cane it's out there for all to see. I get a lot of stares and an occasional question about why I'm using a cane like yesterday at my son's game a parent asked me "did you get hurt or something?" with the emphasis on something. I gave the usual retort, some days my legs don't work so good.
The big question is whether the HSCT has improved my disease from pretransplant condition. The answer is, the jury's still out. I know I'm worse than I was in October 2011 but that was after I stopped Tysabri and I had further progression before HSCT in May. Last year at this time we were waiting to move into our house and we lived in a 2nd floor apartment. There were 20 steps to get up and down and I could get down without the railing consistently. I have an appointment in November with my Neurologist at which time I will go for a brain and C-spine MRI. The results will show if any additional lesions have appeared in the past year.
The most important aspect of my recovery is how close I am to stressful situations. It is amazing how even the slightest stress will immediately impact my ambulation, leading to more stress, leading to more physical problems...
That's all for now. I will update again after my MRI's in November.
