To my fellow sufferers:
[and to Dr. Janis who has brought my: 2 faces closer together and pulled me
out of the closet]. Hello.
Today is my 50th birthday. I am a practicing MD, and previously obtained a
PhD in Neurobiology and Behavior. I have a busy practice, specializing in
Neuro-Ophthalmology. I have had PD for a decade. I diagnosed myself, and the
diagnosis was contradicted by the first two colleagues who examined me, but
finally corroborated. I have been under the care of Dr. Stanley Fahn, who has
been informative, interested, and helpful. I have all the classic symptoms
and signs- tremor, bradykinesia, freezing, variability during the day
sometimes doing best in the middle of the night [contributing to my
professional productivity during my first few years of PD], on-off's that
were present before I ever took my first Sinemet but are worse now, dystonia
of all kinds including toe-cramping and back pain when I'm "low" and rapid
scanning speech when I'm "high," worsened with medications, trouble sleeping,
anger, depression...
Why do I read exchanges among PD patients? Because as a physician I
know that the only experts in a disease are the patients who have it. When a
patient with a disease has a complaint that has not been associated with that
syndrome in the books, neither the patient nor the physician initially know
whether to attribute the complaint to that syndrome, or whether it is
unrelated. Occasionally a patient describes a symptom so eloquently and
precisely that the physician can use that description to help other patients
in defining what is bothering them. Exchanges among PD patients and my own
experiences have convinced me that there is a lot that is not taught and that
most physicians have not heard about this disease!
We tend to be a quiet bunch and as a result PD is the least funded of
neuroogic diseases [ PD: $ per patient vs. $ for AIDS, $ for MS
and $ for stroke]. Perhaps we should get together not only to rattle
political chains and get money spent in appropriate amounts to develop a real
treatment and even cure for this disease while there's still time to help
ourselves, but also to record and quantify our symptoms so that we contribute
to an understanding of the natural hisory of PD; and our experiences with
medications so that docs out there who are managing PD patients but have no
real understanding of the complex pharmacodynamics [GPs and many general
neurologists] will either get smart or refer their patients to specialists.
Since I know this group is interested in medications: My current regimen
is to dissolve Sinemet in Vitamin C drink and cranberry juice and take a dose
[containing 50 mg] every hour.This allows me a smoother, more predictable
response --as long as I avoid protein. [I eat mainly fruit and cookies
during the day when I'm seeing patients.] Dr. Fahn suggested this to me a
year ago, and it has changed my outlook on life - I no longer dread each day
quite as much, or feel that I can't continue working.
We might also record our experiences with social prejudice against
people who move or look funny: assumption--worst of all among doctors-- is
that the shaking hand means either you're drunk or demented, or both. One
nice thing about communicating in writing is that we don't have to tell how
many hours it took to type the damn thing one key at a time, and we dont have
to keep reminding each other that we're still the same as we always were,
only now trapped inside bodies that we can't control.
Incidentally, to Dr. Janis, and others with neuro-ophthalmic sequelae of
PD, there are a number of practical solutions I would be glad to offer. For
example, if reading is hampered by seeing double owing to convergence
insufficiency, a prism is unlikely to be of consistent help because of
variability, but should be tried [a press-on Fresnel prism can be measured,
applied --by a good ophthalmologist, strabismologist or
neuro-ophthalmologist--and removed easily if not working.] Even more simply,
when you see double, or any time you read, take a single piece of scotch tape
and place it on the inside of your left spectacle lens, covering the
"reading" part of the glasses. No more double vision!! Let me know how it
goes. Jacqueline Winterkorn, PhD, MD
