|This chat session was presented on March 4, 2003 from 1:00pm to 2:00pm EST. Dr. Peter
Werner, Assistant Professor in the Department of Neurology at Albert Einstein College of
Medicine in New York, served as the Guest Expert. Advance questions were received and
every effort was made to incorporate them into the chat session.
This chat has
been produced by ElderCare Online and the Alzheimer Research Forum. This is an educational forum where
caregivers can connect with professionals and clinicians to understand Alzheimer's
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MODERATORrichoboyle (Mar 4, 2003 1:03:57 PM)
hello Dr. Werner and welcome
Dr. Werner (Mar 4, 2003 1:04:16 PM)
Helllo! Good to be here
Laurio (Mar 4, 2003 1:04:36 PM)
I am so glad to be able to talk with you in this chat Dr
Dr. Werner (Mar 4, 2003 1:04:56 PM)
Hello! I look forward to your questions.
Laurio (Mar 4, 2003 1:05:16 PM)
great, I cant wait till we start, *grinning with eager anticipation*
MODERATORrichoboyle (Mar 4, 2003 1:06:15 PM)
laurio... who are you caring for?
Laurio (Mar 4, 2003 1:06:22 PM)
my Mother in law
Laurio (Mar 4, 2003 1:06:37 PM)
she was diagnosed about a year ago
Laurio (Mar 4, 2003 1:07:53 PM)
I have never been a caregiver before and it can at times be overwhelming!
Dr. Werner (Mar 4, 2003 1:08:29 PM)
How is your mother-in law doing? Is she in need of assistance all the time? Hi Arnie!
Laurio (Mar 4, 2003 1:08:38 PM)
yes and no,
Laurio (Mar 4, 2003 1:09:09 PM)
I see her weaknesses and she refuses to acknowledge she even has a problem, figuring if
she ignores it , it wont be there, gggggg
MODERATORrichoboyle (Mar 4, 2003 1:09:26 PM)
today we have a special "Ask the Expert" chat session with Dr. Peter Werner from
Albert Einstein College of Medicine in New York. Our discussion will be on Parkinson's
Laurio (Mar 4, 2003 1:09:52 PM)
she has little use of the right arm from the parkinsons
Laurio (Mar 4, 2003 1:10:06 PM)
and I note a drag in the right leg as well
Charlie (Mar 4, 2003 1:10:56 PM)
my husband actually diagnosed with Bradikensia - not Parkinson's itself. He has the
tremors and gait problem, but nothing else obvious. Should I expect to see worsening?
Dr. Werner (Mar 4, 2003 1:11:08 PM)
In reply to Laurio: Parkinson's often starts on one side. Even at this stage, however,
treatment is very effective and should be sought.
Dr. Werner (Mar 4, 2003 1:12:05 PM)
In reply to Charlie: It is really hard to say without additional information. Was the
diagnosis made by a movement disorder psecialist?
Charlie (Mar 4, 2003 1:12:28 PM)
neurologist - also handling his Alzheimer's (or Pick's).
Laurio (Mar 4, 2003 1:13:20 PM)
the medication prescribed is Eldepryl 5gr BID, she reluctantly takes it. she is 79 years
old, and stubborn as they come, ggggg
Dr. Werner (Mar 4, 2003 1:14:01 PM)
If he has Pick's, his movement symptoms might worsen. If the neurologist thinks it's
beneficial, you might want to consult a neurologist specializing in movement disorder
Laurio (Mar 4, 2003 1:14:48 PM)
when she was first diagnosed the tremors were simple and involved only the right hand, not
the entire arm.
Charlie (Mar 4, 2003 1:14:51 PM)
thanks, will ask her about that...right now he is battling other health issues, but when
he's completed physical therapy for that, will be going back to the neurologist.
Dr. Werner (Mar 4, 2003 1:15:52 PM)
In reply to Laurio: Is she seen by a neurologist? The Eldepryl alone shouldn't have many
side effects, it's a mild treatment.
Laurio (Mar 4, 2003 1:16:22 PM)
not any longer, she was diagnosed by the Neuro, but he passed her back to the Family
MODERATORrichoboyle (Mar 4, 2003 1:17:05 PM)
Here is an advance question from one of our membrs: In the advanced/terminal stages of
parkinsons disease, is there a point where pharmacologic therapy offers little benefit and
should be tapered or withdrawn?
Dr. Werner (Mar 4, 2003 1:17:08 PM)
She should really be followed up on at least every 6 months or so by the neurologist, also
to adjust the meds.
Laurio (Mar 4, 2003 1:17:23 PM)
will note that and attempt to get her to follow up
fkcassel4221914 (Mar 4, 2003 1:18:23 PM)
How frequently does Alzheimers accompany Parkinson's Disease?
Dr. Werner (Mar 4, 2003 1:18:30 PM)
In reply to the advance question: Unfortunately, yes. Some patients become less and less
responsive to the medication, and have increased side effects, probably also because the
doses are increased to see some effect.
poko (Mar 4, 2003 1:18:38 PM)
I am currently on Amantadine and Senemet. To what degree should I expect symtoms to abate?
Dr. Werner (Mar 4, 2003 1:21:36 PM)
With regard to Alzheimer - PD (Parkinson's disease): PD and Alzheimer's are not that
commonly seen in the same patient. However, PD patients can have cognitive impairment,
too, especially later in the disease. Lastly, some "PD" is actually Lewy body
disease, which does have many symptoms that are similar to Alzheimer's.
MODERATORrichoboyle (Mar 4, 2003 1:22:15 PM)
do the symptoms of dementia appear in people with PD? If so, where in the progression of
the disease do you tend to see that?
Dr. Werner (Mar 4, 2003 1:23:31 PM)
in answer to poko: you should see at least some noticeable improvement. If your treatment
just started, your neurologist will "titrate" your medication until your
symptoms are better controlled and the side effects still within reason.
Charlie (Mar 4, 2003 1:23:54 PM)
Question about last statement. Neurologist mentioned Lewy Body also because husband shows
signs of that, but he doesn't have anyh hallucinations at all. I should also mention that
whatever he has, it has been exacerbated by prophylactic brain radiation treatments (Jan
2001) because he had small cell lung cancer. Chemo and chest rads completed Dec, 2000.
Charlie (Mar 4, 2003 1:24:19 PM)
Also has been tested for NPH - negative on that.
Dr. Werner (Mar 4, 2003 1:25:00 PM)
the dementia in PD usually does not become obvious until later in the disease, when
movement problems have been quite prominent for a while
MODERATORrichoboyle (Mar 4, 2003 1:26:00 PM)
Another Advance Quesytion: The University of Miami is doing a study of the use of
intraveneous Glutathione for Parkinson's Disease. Are there any preliminary results
available or what other information or opinion do you have on this approach to treating
poko (Mar 4, 2003 1:26:00 PM)
I also have some digestive tract irregularity. Does Parkinson's contribute to this?
Dr. Werner (Mar 4, 2003 1:26:46 PM)
in reply to Charlie: Sorry to hear about that. Brain radiation treatment can cause some
delayed neurologic defects even by itself, and may very well exacerbate his condition.
Charlie (Mar 4, 2003 1:27:12 PM)
thank you Dr. Werner.
Geoff (Mar 4, 2003 1:27:29 PM)
I was diagnosed Parkinsons seven years ago today .My symptoms are controlled by sinemet
and pegolode and I lead a normal life with one exception.I have difficulty in swallowing
can you suggest anything to help
Dr. Werner (Mar 4, 2003 1:27:48 PM)
reply to poko: yes, that is very common in patients with PD. Tell your doctor about it,
nothing to be ashamed of!
poko (Mar 4, 2003 1:28:07 PM)
sks (Mar 4, 2003 1:29:12 PM)
I am dealing with LBD( I believe) with my Mother in Law who lives in our home - originally
she was diagnosed with AD but the hallucinations have been the predominant symptom, also
accompanied by depth perception issues and cognitive fluctuations - recently she has begun
to have a shuffling gait . My question though is the weight loss we see with these (AD
& LBD) - is it a part of PD and do you know if anyone has experimented with Enzyme
additives to stabilize weight loss thru enabling the body to utilize what it takes in? I
should state this is precipitated from experiences with my mother who died in 1995 but
needed enzymes due to pancreatic problems. The enzymes stabilized her situation
Dr. Werner (Mar 4, 2003 1:29:13 PM)
reply to Geoff: difficulties swallowing are known to occur in PD. Your neurologist may be
able to work with a physical therapist to suggest some exercises to help.
Geoff (Mar 4, 2003 1:29:57 PM)
Laurio (Mar 4, 2003 1:31:58 PM)
if the patient ahs confusion & memory loss, could this be a progression of the PD, she
was only diagnosed a year ago
MODERATORrichoboyle (Mar 4, 2003 1:33:16 PM)
We are taking questions for Dr. Werner in order... if you would like to ask a question,
please private message me directly (double click my name to the right)
Dr. Werner (Mar 4, 2003 1:33:39 PM)
reply to sks: weight loss is quite common in PD, and LBD. the main thing to do is to make
sure that she gets proper nutrition; your neurologist may be able to recommend a
nutritionist to contact in this regard. If she has pancreatic insufficiencies, she might
very well benefit from enzyme additives.
sks (Mar 4, 2003 1:34:12 PM)
ty - diet has been addressed and her appetite has improved - thank you
Dr. Werner (Mar 4, 2003 1:35:12 PM)
reply to Laurio: I recommend that you bring this to the physician'a attention. It is a bit
early for PD to have noticeable memory problems.
Laurio (Mar 4, 2003 1:35:16 PM)
thanks, the patient has confusion and memory loss, could these be signs of progression in
the PD? she was only diagnosed one year ago
Laurio (Mar 4, 2003 1:35:41 PM)
anotributional to the age? 79 years
Geoff (Mar 4, 2003 1:36:07 PM)
Taking ito account the vast amount of research going ito finding a cure for Parkinsons.How
long in your opinion before this cure is found and from what direction do you think it
will come ie drugs or surgery
Dr. Werner (Mar 4, 2003 1:36:49 PM)
reply to Laurio: Sudden loss of memory and confusion should always be looked into, age may
contribute, but this sounds like a more rapid loss of memory function.
Dr. Werner (Mar 4, 2003 1:39:13 PM)
about the glutathione (also called GSH) infusion study: this is based on findings about
10-12 years ago that PD brains have less glutathione in the areas affected in PD than
control brains. The problem is, that nobody knows whether infused glutathione really
reaches the brain. GSH does not readily cross the blood-brain barrier.
Dr. Werner (Mar 4, 2003 1:40:52 PM)
Continued: However, there are reports that GSH infusions may be beneficial in PD patients.
This can also be due to the so-called placebo effect. This is why a formal scientific
study, like the one at U. Miami, is needed before we can really say if it helps, doesn't
work at all, or maybe makes the disease even worse.
MODERATORrichoboyle (Mar 4, 2003 1:41:43 PM)
In some patients is hypertension a part of one of the stages of Parkinsons?
Dr. Werner (Mar 4, 2003 1:42:39 PM)
With regard to research in general: We have made alot of progress; however, to the
frustration of all of us, we are still years away from a real cure. diseases like PD and
Alzheimer's are hard to model in the laboratory, and this is one main reason why progress
is solwer than we like.
Dr. Werner (Mar 4, 2003 1:46:16 PM)
changes in blood pressure are sometimes seen in PD. One thing that is important to ask is
whether the patient is taking sinemet. the carbidopa dose (part of sinemet) may have to be
increased, but it should be followed up on in any event. it is also likely that the
hypertension just happens to occur at this time. I can only second the disclaimer: please
do not medicate on your own!
keysgram (Mar 4, 2003 1:46:44 PM)
I'm curious about the hypertension, as my mom continually experiences lightheadedness and
Dr. Werner (Mar 4, 2003 1:49:15 PM)
reply to keysgram: definitely notify your/her physician about this. if the hypertension is
bad enough to cause these types of symptoms, it should be dealt with ASAP.
keysgram (Mar 4, 2003 1:50:08 PM)
thanks, she is seeing her physician on friday. I will make sure it's a priority.
Laurio (Mar 4, 2003 1:50:20 PM)
loss of appetite? food not being desireable, is this just another symptom? and is there a
resource I can personally review on full sypmtom loads possible with patients exhibiting
signs of PD?
keysgram (Mar 4, 2003 1:52:24 PM)
I understand that PD progression is classified by Stages. Where can I find this kind of
information, to help me better understand what stage my mom is at?
Dr. Werner (Mar 4, 2003 1:52:47 PM)
reply to Laurio and keysgram: Loss of appetite is , again, not uncommon in PD. I suggest
that you contact a PD support group. Most of them are run by trained health professionals,
who can address those problems more directly
MODERATORrichoboyle (Mar 4, 2003 1:56:22 PM)
a final advance question: "Please comment on the relationship between reducing the
dosage of the neuroleptic and onset of more serious Parkinsonism and nearly
Dr. Werner (Mar 4, 2003 1:56:25 PM)
the stages in PD are 1-4 according to Hoehn/Yahr and then there is the UPDRS or Unified
parkinson's disease rating scale. The best information on those can be obtained from
patient support groups at local medical centers, or from the Parkinson's foundations. look
for the NPF (National Parkinson's
Foundation) or the Parkinson's Disease
Foundation (PDF) on the web, they have good information material available.
keysgram (Mar 4, 2003 1:57:17 PM)
Liz (Mar 4, 2003 1:57:33 PM)
Is PD hereditary or increase the chances of getting this disease if your parent had PD?
MODERATORrichoboyle (Mar 4, 2003 1:58:40 PM)
we will be taking only these last questions.... Dr. Werner will have to leave at 2pm :(
Dr. Werner (Mar 4, 2003 2:02:05 PM)
Neuroleptics and PD: This is a complicated issue, here is an attempt to answer it. If I
remember ther full question corretly, the patient had DLB and was treated for some time
with neurleptics, then the dose was reduced and her PD symptoms worsened. In fact,
neuroleptics can actually cause certain symptoms of PD, the so-called tardive dyskinesia.
however, since the patient had DLB disease before, the parkinsonism is unlikely to be due
to the neuroleptics or their withdrawal/reduction. my suspicion is that the patient is now
more active (less drowsy) and thus the impairment due to the DLB is more noticeable. Also,
DLB does progress, and these factors combined may have given thast impression.
MODERATORrichoboyle (Mar 4, 2003 2:02:59 PM)
thank you dr werner... i know that was a challenging question to respond to in a short
Dr. Werner (Mar 4, 2003 2:04:06 PM)
reply to Liz: most forms of PD are not known to be hereditary; however, there appears to
be a slightly increased risk for getting PD if a family history exists. If a number of
your ancestors had PD, it would be worthwhile to talk to your neurologist. However, these
so-called familial forms of PD are really rare.
sue (Mar 4, 2003 2:04:55 PM)
at what stage should one think of surgery?
Dr. Werner (Mar 4, 2003 2:07:58 PM)
reply to sue: in general, surgery is currently thought of as treatment for patients who
are otherwise in good-satisfactory health, and who do not tolerate or do not respond to
medication. This is a tricky question, I would advise to consult both your neurologist and
talk to the neurosurgeon who would do the procedure. There is a considerable risk of
complications, after all, it is brain surgery, with all caveats.
MODERATORrichoboyle (Mar 4, 2003 2:08:43 PM)
Thank you Dr. Werner... this has been an excellent session... one that I found to be very
Laurio (Mar 4, 2003 2:08:56 PM)
thanks for your time!
MODERATORrichoboyle (Mar 4, 2003 2:09:00 PM)
We will post the transcript (after editing for space and typos) within 24 hours
Dr. Werner (Mar 4, 2003 2:09:07 PM)
My pleasure! Thanks for the good questions and your excellent moderation.
Geoff (Mar 4, 2003 2:09:14 PM)
Than you Dr Werner a very interesting session also thanks to Richoboyle for organising it
I hope ther will be more in the future
Laurio (Mar 4, 2003 2:09:23 PM)
I second that
sue (Mar 4, 2003 2:09:28 PM)
Laurio (Mar 4, 2003 2:09:38 PM)
thanks for your hard work, you did well Rich
MODERATORrichoboyle (Mar 4, 2003 2:09:47 PM)
We would like to provide more PD info in the future... so please let us know what
you need to have.
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