Saturday, November 16, 2013

Brave Friends and "Progressive" Diseases

As some know, it makes me irrritable when I hear degenerative diseases like Parkinson's described as "progessive"-- only for the disease, as my friend Emily says.

Yet progress still does happen. My friend Dutch Salmon has had our mutual condition for about two years longer than I have, and he has had a hard time of it lately, though I never heard him complain.

When your Parkinson's gets worse, it is possible to have a battery-powered brain implant that can have good results or even nearly miraculous ones. Yesterday, Dutch's wife Cherie sent me this report. I will cut to the heart of the matter and past details more of interest to a "Parky" person.

"... we went in this morning and the neurologist tried some different
settings.  There are two wires in his brain and each one has four
electrodes.  Also, during the surgery last week, they tested how much
electricity Dutch could 'stand', and it was quite a lot.  There is also
a pulsing setting for each of the electrodes as well as a 'width' of the
pulse. So the combination of possibilities if almost endless.  She
started with a low setting and tried first with only one electrode on
each wire, and then two.  Almost immediately, his arms and legs loosened
up from their normal Parkinson's stiffness.  The tremors in his hands,
always there, even with meds, stopped when she electrified the second
electrode on each wire.  He also quickly noticed more strength in both
of his arms and was able to lift himself out of the chair without any
help.  Bud (he skipped class this morning to go with us) and I noticed
that his voice was stronger and clearer.  The neurologist kept
commenting on how much better his face looked...evidently the muscle
stiffening gives Parkinson's patients something called the Parkinson's
'mask'. I'd never noticed that, but he does look more relaxed now.  We
took a break at that point and walked over to the hospital cafe and had
a cup of coffee.  The difference in his gait was amazing.  His
'shuffling' was greatly reduced.  Even his back, twisted from the
secondary dystonia, is much less painful. He noticed the decrease in
back pain last week after the electrode implantation...BEFORE the second
surgery and the electricity was turned on! The dystonia was the one
thing that he was warned might not be improved by the DBS. At best, it
will take the longest (perhaps months) to see improvement.  But the fact
that the pain is decreased is a very good sign."

There is a big learning curve, and so far, there IS no cure. But modern medicine and science can sometimes make real progress. For anyone whose life is shadowed by a neurological disease it is more than a little comfort that some things can be done to reverse the entropic curve downward, and it should still be a long time before my last day in the field. Thanks to Dutch and Cherie for being both friends and pilots on this strange journey.
Dutch and  me at Owl Bar last season

Libby left with Ataika; me in leather jacket & cowboy hat; Dutch to right with black dog

1 comment:

Anonymous said...

Wow! That sounds like a real breakthrough! I will hope and pray that progress continues!...L.B.