On Dec 7, 7:27*pm, Monk wrote:

If we weren't on opposite coasts, I'd come say hey! *Did the side
effect (paralysis) wear off yet Bob?
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When discussing the more aggressive treatment regimes, most of which
included neuropathy among their side-effects, the physicians were
careful to make sure I understood that some of those side-effects --
especially the neuropathy -- could very well prove permanent. Of
course, the other side of the coin is that you get more bang for your
buck with the aggressive regimes, and that given the nature of MM, if
you can't knock it down early... reduce it to the status of treatable
chronic illness -- you might as well not even bother, since you'll be
putting up with side-effects that ruin your life-style but getting
nothing for it in the long run.

Once I had all the information -- or as much of it as was available --
they left me alone to make my own decision. One point that was
stressed repeatedly was the probability that any neuropathy might
well prove permanent, where as most others -- hair loss and so forth
-- tend to be temporary.

I opted for the most aggressive regime. Neuropathy did appear but
was confined to my left side. I gauged it's progress and, when it
began to effect my ability to use my hands, we substituted a less
aggressive chemical approach. At that time I began squeezing sponge
balls and those Charlie Atlas hand-strengtheners with the idea of
ensuring I would be able to retain what dexterity and strength I still
hand.

So... no, the effect has not worn off -- and probably never will. But
neither has it gotten any worse. Warmth seems to help, which has lead
to some unusual practices such as wearing wool gloves to bed :-)
Soaking my (left) hand in hot water tends to restore a good deal of
the lost dexterity, resulting in running back & forth between the
computer and the bathroom when I'm working on a particularly long
article or whatever. But with regard to your question, the side-
effects are the result of my decision, which I think was a good one.
I've already pretty much given up being able to work in the shop, at
least with regard to lathe & mill work (it's not real safe, working
with such tools when you've got a bum hand). But I see those thing
more on the order of challenges rather than disabilities. In any
case, it's a bit too early to draw conclusions. As the exercises
increase the strength of my remaining musculature, I'm able to
compensate for the losses. With typing as an example, I've gone from
about 100 words per minute to about half that.... plus a lot of
errors. But I'm still able to type, which means I can still
communicate.

Some of the other problems, such as trying to dress myself or to open
a pill bottle when you have one dud hand, are things I'll simply have
to work around.
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As you've probably guessed by now, one of the most important aspects
of this regime is to keep my HEAD 'healthy' -- to not let the problems
get me down. Ideally, the problems get compartmentalized -- tucked
away with similar problems and dealt with as a batch rather than on an
individual basis. So long as I can control the pain, I strongly
believe I can overcome the problems inherent in the treatment.

As for the rest of it, I'm just damn happy that more people don't have
it. Right now, me and the team of physicians are literally hand-
tailoring a treatment that matches both the patient and the disease.
If more people suffered from MM the bean-counters probably would not
allow a team-oriented approach.

-Bob