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Nancy, age 50, PD 20yrs. Pallidotomies May & July 1995
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Since her Pallidotomies last year, May & July, Nancy has progressed on
many fronts.
Pro:
The terrible dyskinesia is gone. Elimination of constant dyskenetic
movements has resulted in more enjoyable dining and socializing. Tremor
has been significantly reduced.
Ability to get out of bed and chairs has greatly improved.
Parkinson's meds Sinemet 25/100 - 1/2 every 3 hours, Sinemet cr 25/100
every 3  hours,  and Permax 1 mg.- 1/2 every 3 hours are all doing
their job now. Occasional use of Ativan for anxiety works well.
Replacement of Prozac with Serzone 1 per day is in progress. Hope is to
improve sexual function (still to soon to tell). Blue lenses still seem
to provide some tranquillity and come in handy. Caregiver getting
closer to regular nights sleep (what ever that is at age 50).
Socializing is fun again. Enjoyable golf is possible and ability to
pick up and hold grandchildren has been a real gift..
 
Before surgery Sinement 10/100 with permax created terrible dyskinesia
. Sinemet CR could not be tolerated. Wild extended bouts of dyskinesia
were common. Blue lenses helped a lot but not enough to completely
blunt the dyskinesia. Ativan was required often to temper panic
attacks. Assistance all hours of the day and night required to get out
of bed and chairs. Caregiver sleep patterns were regularly disrupted to
help spouse turn over, get to the bathroom but there were
occasionally other fun things too!. Prozac worked well but with some
sexual dysfunction. Eating was hard work, socializing was not as much
fun as it used to be. Holding grandchildren was not possible.
 
Con:
 
Freezing at end of dose is still significant and  occasionally requires
assistance from caregiver. Expectations were very high so we are still
adjusting our sights downward.  Menopause/menstrual cycle creates havoc
with the Meds. Usually the weeks before menstruation  Suffered a bout
of anemia (several months before detected) which was easily corrected
with iron supplements but many unusual behaviors occurred during this
time such as constant chewing of ice and breaking of teeth. Thought
this was related to the surgery but it wasn't and was corrected with
the iron supplements and it has not returned.  Unwanted weight gain of
nearly 20 pounds has occurred probably because of the elimination of
the dyskinesia (not burning the calories, and the joy of being able to
eat normally again.   Socializing is fun again but after 20 years of PD
changes, reestablishing old social networks and establishing new ones
is tough work. Its something neither one of us planned on. (But what a
great problem to have.)
Our own Interpersonal relationships are another huge challenge. The
caregiver/patient  role and the husband/wife  roles have had to undergo
some very significant changes. So much so that we are getting
counseling to help us through the transition. After 20 years of
adjustments and changes to increasingly disabling  PD symptoms,
virtually over night we have had to accept an enormous change in our
lives. This obviously is a huge pro but an awful lot of what took 20
years to painfully build was removed literally overnight. Reflecting on
what's happened might be described as the man who had three wives. The
first a tennis player, golfer, party goer, wife and mother full or life
and enthusiasm: the second and ailing wife with a progressive
degenerative disease that was filled with  depression and demanding of
the highest order of understanding and communication found only in the
marriage vows ; and now the woman  who is re-establishing herself often
reminding me that she is an adult and does not  need to be
told/helped/aided all the time. This reminder often involves things
that I/we had started to take for granted but are now a source of new
and interesting controversy. Four steps forward and one step back is
close to 80/20 and we are learning how to accept that. But we still
fight on, working for the UDALL bill and the promise of a cure.
 
New finding:
 
You might wonder why this sharing is occurring now, 8 months after the
second pallidotomy. Well if you have hung in there with us we have what
is for us a new discovery. And wanted to share it and ask if any others
have experienced this? With or without pallidotomy.
 
As we continue to fine tune this new and wonderfully exciting
experience, we are able to focus more on other ills and woes such as
random back, leg and arm pains and numbness in the left hand that
seemed trivial pre pallidotomy.
 Yesterday  in an effort to better understand some of these problems
our neuro performed and EMG on Nancy's arms, legs, and back.  Low and
behold the tingling and numbness in the left hand which is where the
tremor started 20 years ago was diagnosed as Carpel Tunnel Syndrome,
which computer jockeys will relate to from excessive keyboard and mouse
usage. My suspicion since Nancy really hasn't worked at keyboards, is
right handed and has not had any repetitive stress type jobs in her
lifetime is that the repitition associated with the tremor and in later
years the dyskinesia are probably the cause. The medial nerve is the
one that is the culprit. She suffers numbness and tingling in her thumb,
index and middle fingers and some pain in the hand, elbow and upper
arm. The doc said surgery would probably relieve it so we are
considering that. In th emean time a hand splint worn at night should
help.
 
Anybody out there experienced this phenomenon?.
 
Hope this report adds some value to this incredible list serv. We feel
blessed to have discoved the list in December 1994 and we have been
major beneficiaries of the kndness, thoughtfulness and intellectually
stimulating material that so often is avalible here.
 
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Bob & Nancy Martone [log in to unmask]
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