05-31-02
Patience. For most of my life it has eluded me. But never has it been as
hard to find, as in these last few years, regarding the DBS {Deep Brain
Stimulation} procedure, for treating my Parkinson's Disease.
First, there was the waiting for FDA approval. It was Feb, 1998 & after my
tremors on my left side were stabilized through a thalamotomy in ‘96, the
tremors had surfaced on my right side. The DR had recommended the DBS, but
since it was not yet FDA approved the insurance wouldn't pay. There was too
much risk in having another thalamotomy. Excessive stress in the thalamic
region has been known to cause blindness, loss of speech, stroke, etc.
There was another option. A thalamic stimulator implant could be done.
Basically the same procedure as a DBS, but not as deep in the brain. Also,
it worked more for tremors than other symptoms, but since tremors were my
main problem I decided to go for it.
Then there was the where & who. Where could the surgery be done & who would
do it? The closest authority was Kansas University Medical Center. I went
there, over four hours one way, did the testing, & was approved for
surgery, but I'd have to get in line. The first slot was in April, so I
waited.
The end of April came & no word. My calls reached only answering machines.
Finally a woman returned my call to say she was sorry, but somehow I didn't
show on the waiting list. However, as soon as possible, I'd be put on the
list for sometime that summer. I know what it means to be just a number.
I eventually sought out the neuro-surgeon that performed my thalamotomy in
'96, Dr Kelly Danks, in Fayetteville, AR. I asked if he planned on doing
thalamic implants, & he said yes, eventually. He told me he believed he
could do it, but if it were him, he'd go to where there was lots of
experience. I told him that if anybody got in my brain, it would be someone
who really cared. Besides, I knew two absolute facts. One, somebody had to
be his "first". Two, it wouldn't look good if he lost his first patient.
We wait again for new equipment to do the surgery. Finally, in Oct, '98 I
had my surgery, three times in fact. Due to complications the first time,
me going into a major seizure the second time, & everything going perfect
the third time, & presto, I had my implant. Whether any problems were due
to Dr Danks being new, or my long history of freaky accidents, I don't
know. I have never lost faith or trust in my Dr. Period! I believed from
the start that Kelly was my answer to prayer. I still do.
In the spring of 2000, I contracted a freak infection in my stimulator
wiring. My head was sore & oozing a smelly puss. After long bouts with
various antibiotics & two surgeries to scrape clean & disinfect, it became
apparent that the stimulator would have to go. In Jan, 2001, the Dr removed
it.
For seven months I shook. After the calm the implant had given, this was
torture. However, I had developed balance & rigidity problems as well. The
next surgery would be a bilateral DBS-STN, & so, on Aug 02, 2001, it was.
Only this time, I was going to an experienced Dr & team.
As before the tremors were gone. But calibration after calibration, my
walking, balance, & rigidity, just got worse. This has gone on for ten
months. Each time Kelly would tell me assuredly, "We'll find the right
combination. It's only a matter of time.
Then last weekend, Nanny & I attended the Shake, Rattle, & Stroll put on by
Joan Snyder, The Parkinson's Alliance, & friends. A fundraiser for PD
research. I completed the walk, Sunday, with two canes. By Monday, I was so
stove up {Arky lingo for stiff as a board} I could barely move. I was just
as the dog that was laying on the cactus. I hurt like heck, but was too
sore & tired to move.
Tues morning, May 28th, I hobbled painfully in to Kelly's office for yet
another calibration. He asked how the walk went & how was I? I told him the
walk was fantastic & I wasn't worth shooting. He looked at me warmly, like
a brother & said, "It's going to work. We're GOING TO BEAT THIS THING!"
To be honest, I had finally given up. But, I had nothing to lose by
letting him calibrate. Me, Kelly, & Cindy, his right hand & surgical nurse,
have gotten so close that I felt I was letting them down. We have laughed &
cried together. They are more than my Dr & nurse. They really are friends.
Anyway, he did the calibration & it did seem better. With the tremors, you
can see immediate results when they hit the right adjustment. With rigidity
& balance, it's a slower & more subtle result, if any. When I got to the
outer door, I put my cane under my arm & walked tenderly, apprehensively,
to the truck. Since Tues morn, I have experienced one blessing after another.
Over the previous months, one lost ability over another had been as mini
deaths. One after another, I mourned those loses. I buried them. I had sold
my new 4-wheeler & was trying to come to terms with a future with no
hunting. Arrangements were & are, in place to add on a wheelchair ramp &
handi-capped bathroom. I've noticed that it's not the body withering that's
dangerous. It's when you let the mind & the ambition of the inner man
wither, that true decay & death take hold.
It's the little things that bring major joy. Money's important, but how
much. A trip to the Bahamas, $5000. A new truck $30000. Peeing standing up,
without touching the wall, & getting on/off the toilet without an aid,
PRICELESS!
Standing up from an armless chair, that before I just avoided. Drying off
with a towel while standing, unaided. Being able to turn my head, while
driving, without pain or effort. Being able to bend over & tie my shoes,
while standing, unaided. The list goes on & on. There is a common thread
here. UNAIDED! INDEPENDENCE! FREEDOM! CAN DO! WANT TO! WILL DO! Previously
lost & buried phrases.
I didn't realize how dead I had become, until I rejoined the living. Do I
still have PD? YES! Can I walk or do other things like normal? NO, but it's
a compromise I can live with. Extra fat & atrophied muscles don't help. But
I can correct that in time.
Patience! I'm not patient, but rather have been in the line of, "no other
choice." I don't tell my story to discourage, but to encourage. I've never
regretted any brain surgery, or my choice of surgeon. I would do it all
again. The temporary suffering if nothing compared to the joy of tying my
shoes, or having a hot cup of coffee, without fear of danger or embarrassment.
DBS's are fairly common now. Yes, there is risk & there are tragic
failures. I for one couldn't face the life I had, knowing that relief was
possibly & probable, but without surgery, Hell on earth was certain.
Jimmie "Toad" Turner
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janet paterson: an akinetic rigid subtype, albeit primarily perky, parky
pd: 55/41/37 cd: 55/44/43 tel: 613 256 8340 email: [log in to unmask]
smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0
a new voice website: http://www.geocities.com/janet313/
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