I’m determined to actually finish and post this. I had a long post composed in Word back in early June, but never got it quite done or on.
Long story short, I’m not where I hoped to be at this point.
The good news:
- I’ve not had any complications or infections from the transplant. I often forget I went through that whole ordeal, until I look in the mirror – my hair is very short. Isn’t it supposed to grow ½” each month? Mine is barely an inch long in places.
- At the 3-month mark, I had my Hickman line removed; stopped one med; and got to relax the precautions on what I ate.
- Now I’m nearly to 6-months, and that means stopping another med as well as way fewer blood draws!
I am not any stronger and in fact my legs are weaker and I have way more problems with stiffness and spasms in them. I’ve increased some meds, but the spasms still seem to be getting worse. I’ll see both my neurologist and my rehab doc in the next few weeks so I’ll see what can be done.
Though that seems to be a worsening symptom of my disease (which would imply the transplant failed), other things did improve: my voice/speaking was almost immediately clearer and stronger, and I’ve had less trouble with bladder & bowel issues. (I know that’s probably in the category of too much information, but I have to recognize the good things!)
The leg problems mean I am still dependent on Rick for getting in and out of bed and putting on undies, pants, and socks. Fortunately, he can still work from home in he mornings until he gets me settled. Another downside of this is that I can’t drive because I can’t do the transfer into the driver’s seat. To get the OK to drive from my chair, I have to get an evaluation from a therapist at UW Rehab. I’d rather be able to do the transfer and keep the current Chrysler seat in the van, but I dunno.
Re: Physical Therapy. When I wrote back in early June, I said I’d “graduated” from Physical Therapy at home and was doing therapy at Evergreen MS Center (near home) 2 days per week. My home PT felt a facility would have better equipment and we’d met all the goals she had set. When I started, she had to help me get on and off my standing frame and I thought she was being ridiculous when she told me she thought I could get to where I was doing it myself, but eventually I could. She (and I) also saw improved strength in my arms, trunk and hips.
I really liked home therapy because I knew I made good progress and my therapist was a great motivator and coach. It may have also helped to have “home” be “the gym,” because that was the place to keep up with the exercises. The problem as I made progress in becoming more independent, i.e., doing the transfers myself, became one of debilitating pain in the muscles that run from the neck to the shoulders.
To explain: To transfer from one seat to another, I must lift my legs with my arms. I could do this easily if I were only lifting the weight of my leg, but I’m also battling the force of the tone (stiffness) that wants to keep the leg down and the knee bent: so much so that it feels like a strong magnet is holding my feet. I’m told this is because of tight quadriceps – the muscles on the top of the thigh. Anyway, pulling up my legs strained the muscles that run from my neck to my shoulders (trapezius) and I ended up in almost constant pain. (Sometimes the stiffness was so bad that I could get my leg to do anything.)
After several weeks of no progress, I stopped going to out patient therapy at Evergreen. Pain kept me from doing the exercises at home. I got some good therapeutic shoulder massages there, but the pain only went away when I stopped trying to lift my legs. But now the tone that keeps the knee bent is getting worse – I know it needs more stretching. I could go on and on, but this is a problem I’m not sure how to solve, so I’ll consult with my docs.
So this is where I am today. I don’t foresee posting very often on this blog. If you want to be more in touch, I’m doing Facebook these days. Or just send an email - or hey - give me a call. I'm almost always at home.
