16 October 2009

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.


  1. Here I am. I read all 3 posts. Your story timeline is so much like mine and as I have been trying to warn, er, tell, newbies since I started my blog, how you and I went through MS is the most common way. Your story is so much like mine! Did you ever hit your head as a child? I am convinced that is what triggered my MS. I didn't ski, I played basketball and watched a pass fly by me in slow motion as my legs were stuck to the court. It was Summer in Seattle and over 80'----but, as usual, it passed and I went on. Newbies are right off to Drs. sooner, put on drugs sooner, but 15yrs out I predict they will be where you and I are or else they never would have been. But I don't want to take away their hope. My power chair is called, Buddy, and that's what he (yeah, I said HE. LOL) is. But I also believe I will walk again, at least with a cane or walker. I have a plan in place, people to help me carry it out, and I see great improvement already. I hope to write a book about it, if I walk again. If I am right about something I think about MS. I take this as an adventure, very exciting. If my partner were not also sick, it would be a piece of cake! I love Seattle! (just had to let that out)

  2. Diane - As adventures go, I don't mind if mine are a little less exciting. But walking again would be exciting in a very good way. Go for it!

  3. Zoom - thanks for these 3 posts on your MS history. Skip's progression was very different from yours (and, apparently, Diane's). She had a long, slow, steady decline pretty much from the outset. No real relapsing, remitting but not a super-fast progression either, as is sometimes seen in PPMS. Because Skip was a chef, she had to quit working almost right away, since mobility problems and weakness were her two biggest symptoms soon after diagnosis.

  4. Cranky - For all the whining I did about my cube farm job, it was the only reason I was able to work for as long as I did. The career I expected -- as a field biologist -- would have ended years ago.