WE MOVE - Parkinson's Disease - Web Chat Transcript 9/30/1999
<http://www.wemove.org:/par_pdwc9_30_99.html>


On September 30, 1999, WE MOVE hosted a Parkinson's disease Web chat
"Parkinson's Disease: Understanding Your Treatment Options" at AllHealth on
America Online. This informative chat offered a unique opportunity to learn
more about living with Parkinson's disease as well as current treatment
options.

AH Moderator: Welcome to the Parkinson's disease Web chat, the fifth in a
series of online conferences about movement disorders.

Tonight's conference is presented by WE MOVE through an unrestricted
educational grant from Athena Neurosciences. WE MOVE is a not-for-profit
organization dedicated to increasing awareness of movement disorders among
health care professionals and the public. Parkinson's disease (PD) is a
neurological movement disorder associated with slowed movements, tremor,
rigidity, and postural instability. PD affects at least 750,000 people in
the United States. While PD most commonly affects people beginning in their
60s, it can occur as early as age 20, and as many as 10% of cases occur
before age 40.

AH Moderator: This evening we are proud to have in attendance two leading
experts in the treatment of Parkinson's disease:

   * Dr. Kapil Sethi, of the Department of Neurology at Medical College of
     Georgia, in Augusta

   * Dr. Mark Stacy, of the Barrow Neurological Institute in Phoenix,
     Arizona

Dr. M Stacy: It's a pleasure to be here :)

Dr. K Sethi: I am delighted to be here. I hope this is informative and
educational for everyone.

Dr. M Stacy: We are ready for your questions.

AH Moderator: How do you make the diagnosis of Parkinson's disease?

Dr. M Stacy: The diagnosis of PD is difficult because there are really no
confirmatory tests. The diagnosis is made on clinical findings, and as
neurologists we look for resting tremor, slowness of movement
(bradykinesia), stiffness of the limbs (rigidity) and walking difficulty.
Sometimes a neurologist will use a response to an anti-Parkinson medication
as a "confirmatory" test to assist in diagnosis.

AH Moderator: I heard that Dudley Moore was diagnosed with Progressive
Supranuclear Palsy. Is this a cousin of PD, and what does this mean?

Dr. K Sethi: Yes, when you see someone with the clinical features
resembling Parkinson's disease, there are several other conditions to
consider. I call them the "bad brothers" of Parkinson's. There are other
clinical findings that may help differentiate these conditions of
Parkinson's disease. In general, these diseases do not respond well to
therapy. In PSP, eye movements are impaired early on. Patients cannot look
down.

AH Moderator: My father and brother had PD. Does this increase my chances
of getting the disease?

Dr. M Stacy: The genetics of PD are not yet well understood. There are 4
large families who have PD in several generations, and a gene associated
with PD has been isolated in these 4 families. Although we frequently see
PD in relatives in our clinic, if you do not belong to one of these 4
families we cannot say you definitively carry a gene for PD. However, there
are a number of trials in which we are looking for family members with PD,
to see if we can isolate another gene for this condition. Although it is my
suspicion that having a family member with PD increases your risk, this not
proven. If anyone wishes to participate in a genetic study they may contact
the NIH at http://www.nih.gov.

AH Moderator: What is the relationship between essential tremor and
Parkinson's disease?

Dr. K Sethi: The relationship between essential tremor and Parkinson's
disease is controversial. While some believe that Parkinson's disease is
more common in patients with essential tremor, others believe any
occurrence of these two diseases is merely coincidental. It is very common
for physicians to misdiagnose patients with essential tremor and
Parkinson's disease and vice versa. Unfortunately there is no definitive
test for either of these two conditions. The diagnosis can only be made by
a neurologist with expertise in movement disorders.

AH Moderator: I've been newly diagnosed with PD. How will I know when I
need to start taking medication, and what will my choices be?

Dr. M Stacy: Beginning medications in PD is dependent on a patientÕs
relationship with his/her physician. If a patient is having difficulty with
employment or other daily activities, the initiation of anti-PD therapy
would be quite reasonable. There are a number of choices for treating
symptomatic PD, but most parkinsonologists would usually begin with a
dopamine agonist or levodopa. The decision regarding which type of drug to
use is most often dependent on the patient's age and degree of disability.
In a young patient without balance difficulties a dopamine agonist such as
Mirapex, Permax, or ReQuip would most often be used. In an older patient
with balance difficulties Sinemet or Sinemet CR would be used.

Dr. K Sethi: In some patients with mild symptoms, Symmetrel may be used.

AH Moderator: Would you please comment on combining many PD medications?

Dr. K Sethi: It is perfectly appropriate to combine different medications
used to treat PD. For example, if one starts with a dopamine agonist and
symptoms break through, it is logical to add low doses of Sinemet or
Sinemet CR. Also if a patient on Sinemet develops abnormal movements
(dyskinesia), then it is logical to decrease the Sinemet and add an
agonist. There are other situations where other combinations of drugs are
necessary.

Dr. M Stacy: I agree. In my practice, the majority of patients who have
been treated for PD for more than 3 years are on multiple medications.

AH Moderator: I read a lot back and forth that Sinemet or levodopa can be
toxic. Is this true?

Dr. M Stacy: The question concerns levodopa or Sinemet and whether it
hastens the progression of PD. In the 1970's, when carbidopa/levodopa
became available, it was suggested to use 750 milligrams of levodopa per
day. At this dosage many neurologists noticed side effects from Sinemet.
Most often these side effects included "wearing off" and dyskinesias. These
side effects led to an assumption that Sinemet was toxic to the nervous
system. Increasingly, investigators believe that levodopa may not be toxic
to the nervous system. We are now more concerned about limiting motor
fluctuations, such as "wearing off" and dyskinesia. In the last year, the
NIH has sponsored a study looking at early levodopa and PD to assist in
answering the question of levodopa toxicity.

AH Moderator: My mother has PD. She's on Sinemet and pergolide. She can't
get a good night's sleep. She's waking up every hour. Is this the drugs? Is
this the disease? What can she do?

Dr. K Sethi: These problems are very common in Parkinson's disease
patients, as well as normal elderly. PD patients may have difficulty
falling asleep because of tremor and stiffness and may wake up repeatedly
because of difficulty turning or jerking of legs. These problems may in
some cases be helped by medication, but in some patients medicines can
cause sleeplessness during the night and excessive sleepiness during the
day. Your mom maybe taking cat naps during the day, and if so, it's
extremely important to keep her active and awake throughout the day. If you
observe closely, you may find her dozing off repeatedly. Both Sinemet and
pergolide can cause sleepiness during the day. Unfortunately there is no
antiparkinsonian drug that does not have this side effect.

AH Moderator: My husband is newly diagnosed with PD and is taking Mirapex,
which makes him a little drowsy. We've heard about falling asleep at the
wheelÑdoes he need to stop driving? Should we consider another dopamine
agonist?

Dr. M Stacy: Recently there was a report at a scientific meeting that found
an increased frequency of sleep attacks in several patients on Mirapex and
one patient on ReQuip. While excessive sleepiness is a concern with almost
all anti-PD medications, the occurrence of a sudden sleep attack poses a
potential personal and public safety risk. In your case, since your husband
reports sleepiness on Mirapex, I believe it is reasonable to try Permax or
ReQuip. However, in general, I believe that Mirapex, Permax, and ReQuip are
very well tolerated. These do not usually require any adjustment in
patients doing well. I have not advised my patients to discontinue driving
when starting a dopamine agonist but it is important to know of this
potential problem.

AH Moderator: I've been taking Tasmar since it came out without any
indication of liver problems. Is there any reason to stop taking it? Are
there any new COMT inhibitors coming to the market?

Dr. K Sethi: Tasmar is a very useful drug used to extend the duration of
action of Sinemet, by blocking its degradation outside the brain by an
enzyme called COMT. Unfortunately in a few patients, it causes severe liver
damage. The FDA mandates biweekly liver function testing in patients
receiving Tasmar. Since the institution of this mandate, there have been no
new cases of severe liver damage. Therefore, in an appropriate patient, I
still prescribe Tasmar, and if you have no indication of liver damage after
using Tasmar for over a year, I would advise you to continue, and get your
liver functions tested. A new COMT inhibitor, called Comtan, is pending
approval by the FDA. The liver function monitoring will not be required to
use that agent, to the best of my understanding.

WE MOVE - Parkinson's Disease - Web Chat Transcript 9/30/1999
<http://www.wemove.org:/par_pdwc9_30_99.html>