On June 1, 1995 I celebrated my year and a half post-Pallidotomy
birthday. As there is much discussion concerning the Pallidotomy procedure,
its benefits and the lasting effects I will attempt to share with you an 18
month post -opt report with you.
The day following my surgery on Dec. 2, 1993 I wrote , I feel
like I'm almost in a fantasy land, but with each passing hour the fantasy
becomes more a reality and what was the Parkinsonian reality becomes a fantasy.
The bilateral Pallidotomy seems to be a complete success. I no
longer am plagued with stiffness, immobility, tremor, excessive sweating,
akinesia, bradykinesia, dyskinesia, walking difficulties, stooped posture,
swallowing difficulties, or speech hindrances. My eyes and mouth remain shut at
night while I sleep rather than both remaining partially open. There is no
longer an "on-off" phenomena.
My voice is strong again. My face is expressive and noticeably
different. I no longer have a sense of urgency when I need to urinate. I do
not need to lie down for 3 hours in the afternoon because my body is so slowed
down. I now sleep through the night and no longer take a sleeping pill before
I go to bed to help me try to get a good night's sleep. My appetite has
returned and eating is a joy rather than a chore. Both my arms swing freely
when I walk. My gait is loose and normal. Karen says my hand feels soft and
pliable, rather than stiff and tense. I move about easily, freely and
naturally.
Then on September 8, 1994, in a newsletter article for the *Movers and
Shakers* I wrote,
I continue to experience the miraculous benefits of the pallidotomy. My
life has been absolutely transformed, given back to me, regained through this
procedure under the skillful hands of Dr. Iacono. Since the surgery I have a
new appreciation for life that causes me to squeeze every delicious moment out
of life. I still have Parkinson's disease, but I have won a battle and it feels
great.
Since the surgery I have skied in Utah for a week, surfed at San
Clemente, skydived from 12,500 feet, hang glided, water skied as well as playing
tennis, and golf on a weekly basis. I believe with the pallidotomy we have
truly entered a new era in the treatment of Parkinson's disease - one that is
filled with great hope.
SO HOW AM I TODAY? Unbelievably great and very thankful. In attempting
to provide some more objective criteria for the scientist and the medical
community I was a 63 on the U.P.D.R.S. pre-opt as a 46 year old with a 12 1/2
year history of Parkinsons. Yesterday I retook the U.P.D.R.S. and being as
hard on myself as I possibly could, the most I could come up with was a 6. On
the Hoehn and Yahr scale I would have been a stage 3.5 pre-opt and on the Schwab
and England Activities of Daily Living Scale a 60%. Today I would put myself at
a 0.25 on the Hoehn and Yahr being extremely hard on myself and at 100% on the
Schwab and England Activities of Daily Living Scale.
Are there any deficits since the surgery, again straining to be totally
honest with you valued members of this Parkinson s community I would list
the deficits as follows:
slight drooling occasionally, speech while over-all stronger and better on
occasion especially when I am tired will become slow and slightly slurred, my
mouth tends to remain open and I have noticed a difficulty keeping my mouth
closed when I am chewing.
I have a tendency to dose off while sitting up all a pleasant
change after not sleeping well for 8 years. I am a bit more stooped than 18
months ago and do tend to get mask-like and slowed down when I am tired.
Whereas the first six months following surgery I would occasionally (every other
day) have slight tremor bursts lasting for about a minute I have not experienced
any tremor the last six months. I have gained the 20 pounds I had lost during
Parkinsons plus about 5 pounds. Whereas before the surgery I could eat anything
and everything including rich creamy desserts without any worries about weight
gain, I have found that I must now watch my calorie intake like most of my
middle aged friends.
To keep me honest I had my wife read over this section of
the report and make any needed changes.
Pre-opt I was taking the following medications on a daily basis.
3 1/2 Sinemet 50/200 C.R., 1/2 Sinemet 25/100, 2 Eldepryl, 3 Amantadine, 4
Permax (.5mg), and 1 Zoloft. Today I am taking 4 Sinemet 50/200 C.R., 1/2
Sinemet 10/100, 1 Eldepryl, 1 Amantadine, 1 1/2 Permax, 1 Zoloft plus 4
Hydergine.
Since my surgery I have gone out to Loma Linda every Tuesday I am
in town to help out Dr. Iacono in whatever way possible through the Loma Linda
Parkinson s clinic. As such I have witnessed firsthand under the most trying of
circumstances a doctor completely dedicated to helping the Parkinson s patient.
I have seen literally hundreds of patients pass through the doors of Loma Linda
many of whom have elected to have a unilateral Pallidotomy, a bilateral
Pallidotomy or a combination Pallidotomy/Thalamotomy. Conservatively 85% of
these patients have a good result ranging from a C+ to an A+. 10-12% receive
minimal help, but no harm is done, and 3-5% have some sort of complication
usually a result of bleeding. NO ONE has died as the result of this surgery or
attendant complications.
These statistics are amazing and will in time be published and
validated. In the meantime I appeal to those of you out there in the medical
community to quit your petty infighting, turf battles, and professional
jealousies. Put them aside for the benefit of the patients you serve, let love
and compassion rule the day and let s join together in embracing this surgical
procedure that offers for the first time in the history of Parkinson s a very
real hope for reversing this ruthless disease.
To any neurosurgeons, who are sincerely interested in learning
this procedure, I would invite you to come out, visit clinic and observe Dr
Iacono operating as increasing numbers of neurosurgeons are doing. Learn to do
the procedure using MRI scan, brain maps, ventriculographs and a thermocouple
radiofrequency lesion probe in less than three hours without tedious
micro-electrode recordings which add many hours to the surgery and nothing to
the results.
Next to helping the Parkinson s patient Dr Iacono s passion is
for teaching others. I have heard him say repeatedly my operating room is open
to all.
As a Parkinson s community we are working hard to provide funding
for Parkinson s research through the efforts of Joan Samuelson, PAN, and Senator
Hatfield s sponsorship of the Udall bill. We are seeking greater cooperation
and perhaps a uniting of the various Parkinson s National groups. It is equally
important that within the medical community there be a whole new level of
acceptance and cooperation so that together we can truly ease the burden and
find a cure.
LET IT BEGIN TODAY.
Dr. Don Berns
4943 Del Monte Rd.
La Canada, CA 91011
818-790-8812
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