Parkinson's Disease Q&A March 4, 2003

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 Disease. This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, the Alzheimer Research Forum and Dr. Werner MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

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 Disease

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 Practice Nurse.

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 Parkinson's Disease?"

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)
Thank you.

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)
Thank you

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 near faints

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 "catatonic" presentation?"

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)
thankyou

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 chat session

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 informative

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)
me too

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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