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>
> There are 16 messages totalling 949 lines in this issue.
>
> Topics in this special issue:
>
> 1. Neuroprotective Supplements
> 2. shortness of breath
> 3. Switching meds--info please? (3)
> 4. PS to Meds Questions
> 5. Looking for movement disorder specialist near Cleveland, Ohio (2)
> 6. Fw: God, Speak to Me...
> 7. NEWS: NEJM: Low-Dose Clozapine for Drug-Induced Psychosis in PD
> 8. NEWS: NEJM: Managing Psychosis in Patients with PD
> 9. Fw: English language, harder than french?
> 10. Uh..before you eat that bacon...
> 11. Sinemet and shallow breathing
> 12. Presenting: "PENNIES FOR PARKINSON'S"
> 13. Fw: Eldepryl/Selegiline
>
> ----------------------------------------------------------------------
>
> Date: Fri, 12 Mar 1999 01:24:05 -0500
> From: Phil Tompkins <[log in to unmask]>
> Subject: Neuroprotective Supplements
>
> An important review article by Drs. C.D. Marsden of the Institute of
> Neurology, London, and Dr. C.W.A. Olanow of The Mount Sinai Medical
> Center, New York, appearing last September in Annals of Neurology,
> Sep;44(3) Suppl 1):S189-96 makes the case that the time is ripe for
> clinical trials of neuroprotective agents. It indicates that a
> large number ("a rather daunting list") of "potentially valuable
> neuroprotective agents ... are now at hand", with more to come. The
> number is so large that taking them through the clinical trials
> procedures now in use will require too long a time, will cost too
> much, and will consequently fail to evaluate everything of potential
> benefit. A new, more efficient approach is proposed. I would
> judge, based on how clinical trials of selegline HCL and Vitamin E
> have gone, that this recommendation is a very good one. But will it
> in fact be implemented, and when?
>
> Although I have not seen the above-mentioned "list", I suspect that
> some of the neuroprotective agents on it are now available to the
> public as nutritional supplements. I would guess that they include
> various antioxidants, or so-called free radical scavangers. Free
> radicals (oxidizing agents) have long been suspected of playing a
> role in the disease mechanism of PD, and the article indicates that
> this is now pretty much confirmed by the evidence.
>
> Given that neuroprotection may be on the shelves of one's local
> health store, that mostof us really don't know much about them, and
> that the researchers see a possibly prohibitive amount of work ahead
> of them before there will be better information, then what's a poor
> PWP to do?
>
> Perhaps it's a time to take a thorough look at the supplement
> industry. Some of us tend to dismiss supplements as "snake oil".
> But there are numerous sincere and devoted researchers whose work is
> used as the basis for supplements. One is Professor Lester Packer,
> Ph.D., Director of the Membrane Bioenergetics Group and Professor of
> Molecular Biology at the University of California at Berkeley. He is
> an expert in the field of free radicals. There is a rather technical
> interview of him at http://www.solgar.com/nutrition_library/articles.
> Another is Prof. William Pryor, of Lousiana State University, about
> whom there is an article in the same place.
>
> There are a few physicians who are proceeding to recommend and
> adminsister supplements as neuroprotecive agents ahead of the
> through trials by the clinical researchers, based apparently on case
> studies and what current basic research implies. One such person is
> Dr. Jay Lombard, Chief of Neurology at a small hospital in the Bronx
> and a voluntary attending physician at Albert Einstein College
> Hospital, who wrote, in collaboration with a Solgar nutritionist, a
> book "The Brain Wellness Plan". The book contains a chapter for
> each of several major neurological diseases. A sample chapter, on
> attention deficit, is available on-line for inspection at
> http://www.willner.com/webref23.htm. The chapter on PD recommends
> NADH, a [multi-]antioxidant formula supplement, Vitamin E, selenium,
> lipoic acid, n-acetyl-cysteine, CoQ10, milk thistle and polyphenols
> (e.g., pycogenol).
>
> Are there any patients of Dr. Lombard here who can comment? Any one
> else, for that matter?
>
> Phil Tompkins
> Hoboken NJ
> age 61/dx 1990
>
> ------------------------------
>
> Date: Wed, 10 Mar 1999 20:00:11 +0200
> From: Gil Lieberman <[log in to unmask]>
> Subject: Re: shortness of breath
>
> Helen,
> My wife Aliza has shortness of breath which we
> attribute to her cardiac insufficiency,not her PD.
> In addition,she may have Parkinson plus which refers
> to PD plus autonomic dysfunctions due to neurological
> causes.Will be glad to exchange notes off list.
> Gil Lieberman,CG for Aliza 75,dx 2/95
> ----------
> Date: Wed, 10 Mar 1999 20:17:48 EST
> From: full_name|OFF Tell LISTSERV about your name <[log in to unmask]>
> Subject: shortness of breath
>
> Has anyone have experience with shortness of breath, which my husband 52/10
> is experiencing?
>
> Helen
>
> ------------------------------
>
> Date: Fri, 12 Mar 1999 03:16:10 +0000
> From: serenityplus <[log in to unmask]>
> Subject: Switching meds--info please?
>
> Hi,
>
> I've been in the TEMPO study, which is a drug study for an MAO type B
> inhibitor, much like Selegiline. I've been on open label with the dose
> still blinded; also, I'm taking Mirapex, barely 1.5 mg/day (had some
> dose limiting side effects, like sleepiness, but no orthostatic
> hypotension. I've haven't gotten a good response to Mirapex, and I
> feel, much as I would like to put off Sinemet (I'm 54, diag. a year
> ago, probably had it from about '89) that my symptoms are really
> getting in my way: tremor is essential, not resting, so it's not a
> problem, but the inability to do much with my right hand, and dragging
> my right side is getting to be too much.
>
> I'm concerned that trying another agonist like Requip will take
> forever (My titration experience with Mirapex was VERY LONG) and may
> not do any more, and may cause problems for nothing. I've read that
> it takes weeks or even months to get an adequate response from
> agonists. I've taken Mirapex, albeit in small increasing doses, since
> last Sept. and it hasn't done much. I suppose the PD could be
> outpacing the therapy also. Q: Does Sinemet take long to show a
> response? How tough is it to come off Mirapex (though maybe I
> shouldn't). Any strategies coming to mind on handling starting
> generic carbadopa/levodopa with/without Mirapex?
>
> I would be grateful for any response. Thanks!
>
> Ann
>
> Dear Ann
It is hard for anyone really to give advice as we all know every PDP
reacts so differently to medications.I am 59 yearsold diagnosed with PD
11 years now . I am fortunate that it has progressed slowly but
typically. My medications have always controled the PD at every stage
but have suffered most side effects e.g. 5years of nausea with every
increase of Sinemet untilI took Domperione? for 3 months weaned mytself
off and found sinemet no longer a problem. From first year of onset
have taken in increasing amounts as the PD progressed
Sinemet cr Eldapryl Permax and 2000 unis of Vit.E aday. In 1997 began to
get side effects from Permax hallucinations voices and untilk I came off
it did not realise how very emotional it had been making me. I was then
graduated onto Mirapex.The whole transition took 6 months till
adjustments were finalised. I also have reached the stage of strong
tremor in leg and hand foot drag. and hand pulled closed into the body
when medication working off. But this medication schedule if I stick to
strict timing I can manage 3 hours on time morning and afternoon the
amount on time depending on activities.
am Sinemet 25/100 1/2 Sinemet cr 50/200 1 Eldapryl 5mg. 1
Mirapex 11/2
12.pm " " " "
4.30 - " - "
10pm - " -
-
I have had little problems from MIrapex andis such an improvement in my
general feeling well but now a year later am finding the on times
getting shorter but could be progression of PD. Keeeping fingers crossed
that we can work out another effective programme
Good luck,love Faith and Hope for acure
Margaret
Clark
hand pulled close to body when medication wears off. But keeping to a
strict timing schedule my neurologist and I have manag
ed a working schedule of ------------------------------
>
> Date: Fri, 12 Mar 1999 03:28:09 +0000
> From: serenityplus <[log in to unmask]>
> Subject: PS to Meds Questions
>
> Sorry, I forgot to mention that I'll be finishing the study Mon. and
> will not be taking the MAOI anymore, but one option I'm considering is
> taking selegiline and generic sinemet with or without Mirapex,or
> possibly even switching to Requip. I see an excellent movement
> specialist, but as you might suspect, I try to take some
> responsibility in being a specialist about me as an individual.
>
> I've heard so many horror stories about going on and off agonists and
> other meds ne, the child.
> >But the e on
> treatments that she has responded to are consistent with a panic disorder or other
> type of anxiety disorder but that doesn't explain the observatio
