Just a quick note to give an update on recovery. I have spoken to many MS'ers in the past couple of weeks who have received HSCT and have provided great support for what undoubtedly will be a longer than expected recovery.
On the positive side, the affects of the chemo on my bladder have subsided and this week for the first time in 2 months I slept the whole night without a pee run :))) Also my energy is almost back to pretransplant levels. Bea and I are up early each day and I put in a good day's work from home. Most days I'm down to one afternoon siesta for an hour or so which in truth most of us could use each day even without a stem cell transplant!
On the less positive side my walking is at a level worse than it was before the transplant. Most days I'm using a cane to get around or a shopping cart if I'm shopping. It's amazing how much easier it is to get around using a shopping cart. People can't even tell I walk with a limp. It gets a little uncomfortable when Bea piles the cases of water on top of me as I'm sitting in the cart at Whole Foods but I deal with it...
I have lost so much muscle in my legs that coordination and mobility in addition to the spasticity has made walking painful and just plain ugly. Arm and hand strength seem worse than before as well. Lastly, the L'hermitte's continues down my right leg particularly in the mornings. It's not as scary as when it first began a few weeks ago as I can kind of predict when it will hit. It still throws me off balance and I gasp with each bolt of lightning down my leg but it's more manageable.
I'm dealing with the slow recovery as best I can. Honestly I thought by now I would be ready to go back to work and moving a lot better not worse than I was before Chicago. Walking out to the field to my son's soccer practice today was a real challenge. It was only a few hundred yards but my body completely locks up making for a walking like motion similar to something out of a Frankenstein movie dragging my left leg along. After practice on the way back to the car Jose Miguel was kicking the ball down the field than running to it. It rolled in front of me and I clumsily kicked at it with my right foot. He said it looked like I had never kicked a ball in my life. There are moments that are incredibly maddening and make me want to scream but it doesn't change anything. I played soccer for 10 years and my son meant no disrespect... He was right.
MANY people I respect very much have told me it is not uncommon to experience a worsening of MS symptoms for 3 months or so. No matter how many times I tell myself this will hopefully be temporary it's still frustrating to have gone through this procedure only to be in my current condition. I'm still confident this was the right decision and I'm hopeful improvement begins soon.
Tomorrow I will buy the Nintendo Wii Fit as I understand this can help to build stability and strength. Also I will begin working out in our pool now that the temperature of the water has finally made it north of 70 degrees :))
Although my body is weak my resolve to fight with all the inner strength I have is not broken. I thank all of you who continue to pray and think of me.
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