Article on Alternative Therapies and PD

PSP Forum –
Sorry for the screwy formatting of this post. These are two emails below that I sent in August ’06 to the local (SF Bay Area) support group on “alternative therapies” (including CoQ10) and Parkinson’s Disease. (I thought the author worked at Scripps but the institution is Cedars-Sinai.) It’s just easier to copy-and-paste rather than re-work the two emails. If you are interested in seeing these sorts of posts from me, note that I am a regular poster on (Yahoo!Groups). I don’t regularly come to the Forum (because I dislike using anything but email to post and read).

Date: Wed, 23 Aug 2006 18:38:47 -0700
To: Local Support Group
From: Robin Riddle <[email protected]>
Subject: Fwd: “Alternative Therapies” & PD (Co-Q10, vitamin C, creatine, etc)

This updated email will be of interest to those considering NADH, glutathione, massage therapy, and exercise. There’s also a resource list for additional info on alternative therapies.

The “Alternative Therapies” article provided answers to seven questions. I found an earlier article by the same author, Dr. Jill Marjama-Lyons, that had ten questions. Perhaps three questions were eliminated to fit the article on one page in the APDA Newsletter Spring 2006. The earlier article was written perhaps in 2004 or early 2005. Here are the three new questions along with the exercise question answered again (because the earlier article gave a longer answer), a resource list (books, etc) for holistic therapies (“holistic” is the preferred term), and some info on the author:

Should persons with PD take NADH? Similar to Co-Q10, NADH (nicotinamide adenine dinucleotide hydrogen) is an enzyme that is involved in energy production of living cells. NADH is not a proven treatment for Parkinson’s disease. Several open-label (patients and examiners were not blinded) studies have shown motor improvement in persons with PD who took NADH. One small double-blinded, controlled study of 10 persons with Parkinson’s disease who took intravenous NADH did not indicate that any improvement occurred in patients.

Should a person take IV(intravenous) glutathione for Parkinson’s? Glutathione is not an approved treatment for Parkinson’s disease. Similar to Co-Q10, glutathione levels have been shown to be lower in persons with PD. Despite many personal stories of patients feeling better with use of IV glutathione, currently there are no published controlled studies proving or disproving it as a therapy for PD.

Can massage therapy help people with Parkinson’s disease? Some persons with PD report massage therapy to lessen muscle stiffness (rigidity) and pain, though the benefit is often transitory and last a few hours or days.

Does exercise really make a difference? Exercise of any kind that does not increase one’s risk of falling is always recommended to increase endurance, improve delivery of oxygen to the brain, heart and muscles, increase muscle strength and mass, and improve coordination, balance and flexibility. Exercises such as yoga and tai chi focus on the mind-body connection and improve balance and mobility for persons with Parkinson’s and many PD centers and health clubs offer these exercise classes. Even for someone with advanced Parkinson’s disease, exercise can make a big difference; chair and bed/floor stretches/movements as well as swimming can be performed by almost anyone. (Note from Robin: the last sentence is not in the APDA Newsletter Spring ’06.)

Resource List for Holistic Therapies
(Note from Robin: the author of the article has a book listed below – third item down. It was recommended to me by someone who used to work with Dr. Marjama-Lyons at Cedars-Sinai Medical Center.)

The American Holistic Health Association’s Complete Guide to Alternative Medicine, by William Collinge, M.P.H., Ph.D.

Alternative Medicine: The Definitive Guide, edited by Burton Goldberg (Future Medicine, 1998), features over 400 holistic practitioners

What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness, by Jill Marjama-Lyons, MD and Mary Shomon (Warner Books, 2003)

PDR for Herbal Medicine, (First Edition, 1999) Medical Economics Company

Prescription for Nutritional Healing, by James Balch, MD and Phylis Balch (Avery Penguin Putnam, 2000)

Tyler’s Herbs of Choice: The Therapeutic Use of Phytomedicinals, by James E. Robbers and Varro E. Tyler

Eat Well, Stay Well With Parkinson’s Disease,by Kathrynn Holden, M.S., R.D. (Five Star Living, 1998)

The Brain Wellness Plan, by Jay Lombard, M.D. and Carl Germono

American Holistic Health Association P.O. Box 17400, Anaheim, California 92817 / (714-779-6152/

NIH National Center for Complementary and Alternative Medicine (NCCAM) 888-644-6226 /

Mind Body Medical Institute 110 Francis St., Boston, Massachusettes 02215 / (617-632-9530) /

American Association of Oriental Medicine 433 Front St., Catasauqua, Pennsylvania 18032 / (888-555-7999) /

Acupuncture Page Listing licensed acupuncturists in each state,

The Homeopathy Home Page

Nutritional Web Site

About the Author: Dr. Marjama-Lyons received her bachelors degree in psychology from the University of North Carolina in Chapel Hill and her medical degree from S.U.N.Y Health Sciences Center in Syracuse, NY. She completed her internship at the University of Rochester and her neurology residency at the University of Arizona followed by a fellowship in Parkinson’s disease at Kansas University. She was assistant professor and medical director of The Parkinson Center at the University of Florida in Jacksonville, and currently is regional director of PADRECC (Parkinson Disease Research Education and Clinical Center) at the Albuquerque VA Hospital, Director of the NPF Parkinson Outreach Program serving Navajo persons with Parkinson’s and medical director of a new Deep Brain Stimulation program in Albuquerque. She is co-author of What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness published by Warner Books (February 2003) and author of the National Parkinson Foundation Medication and Deep Brain Stimulation Manuals. She is dedicated to patient education and believes in a holistic approach to care and life.

(Note from Robin: The author’s name was misspelled in the APDA Newsletter Spring ’06.)

Alternative Therapies & Parkinson’s Disease

This article will be of interest to those considering “alternative therapies,” including acupunture, the herb macuna pruriens (that contains levodopa), Co-Q10, the antioxidant vitamin C, creatine, and exercise. The article has some advice about buying herbs and supplements.

The article is from APDA’s (American Parkinson Disease Association) spring 2006 newsletter. One other article was interesting — “Foot Cramps in Parkinson’s Disease.” The cover article, on “Motor Fluctuations,” was written by the medical advisor to the Society for PSP. That article talks about the “on” and “off” periods one gets when taking Sinemet. I knew that hallucinations were a possible side effect of Sinemet but my impression from the article is that it’s a common side effect.

You can find the full newsletter online at: … %20pdf.pdf

Alternative Therapies & Parkinson’s Disease

What does “alternative medicine” really mean?

“Alternative” is a term that implies a non-Western medicinal approach. It often refers to Eastern (traditional Chinese, Japanese, Indian “Ayurvedic”) methods of evaluation and treating physical conditions. Many therapies can fall within
this category, but the more common ones include acupuncture, herbal therapies, homeopathy, manual therapies (massage, Reiki) spiritual healing, naturopathy, mind-body exercises (yoga, tai chi) and vitamin/enzyme supplements.
The term “integrative,” “holistic” or “complementary” are preferred instead of “alternative” because these imply an addition or combination of these therapies with established Western medicine approaches (dopaminergic drugs, brain surgery, rehabilitative therapies) into a comprehensive program for the individual person with Parkinson’s disease (PD).

What herbs are safe to take and are proven to help people with Parkinson’s disease?

The herbs macuna pruriens, a plant that contains levodopa, can reduce some of the motor symptoms of Parkinson’s disease. Other herbs and many other “over-the-counter” supplements such as vitamins, enzymes and amino acids are
loosely regulated by the Food and Drug Administration. This means that the quality, purity and content of any of these supplements are dependent upon the manufacturing company. Almost none of these have been properly studied
for the treatment of PD. As a consumer, you should contact the manufacturer directly with questions about the purity and safety of the product as well as consult a licensed specialist (i.e. herbalist, nutritionist) for advice before taking any
supplements. Some herbs and supplements can interact with prescribed medicationsor cause unwanted side effects.

Should people with Parkinson’s disease take Co-Q10?

Co-Q10 is not a proven treatment for Parkinson’s disease at the present time. Co-Q10 is a vitamin-like substance found within the energy source of every living cell (the mitochondria). It has been shown to occur at lower levels in persons with PD. A recent double-blind study showed persons with PD who took Co-Q10 300 mg 4 times a day (1200 mg total daily
dose) scored 44 per cent better on motor scales than the persons who took the placebo pills over 16 months. This was a
small study and whether Co-Q10 truly helps reduce motor symptoms or might delay the progression of PD is unknown.
Future studies are needed to help to better understand this. It was found to be harmless to the patients who took it in
the study.

What vitamins should people take if they have Parkinson’s?

There are no proven vitamins that specifically help reduce the motor symptoms of PD. One theory of the cause of Parkinson’s proposes an excess of electrically charged particles called free radicals. Antioxidants, such as vitamin C (500-2000mg/day) help to reduce these free radicals, and therefore this is a vitamin tobe considered for taking.

Does exercise really make a difference?

Exercise of any kind that does not increase one’s risk of falling is always recommended to increase endurance, improve
delivery of oxygen to the brain, heart and muscles, increase muscle strength and mass, and improve coordination,
balance and flexibility. Exercises such as yoga and tai chi focus on the mind-body connection and improve balances
and mobility for persons with Parkinson’s disease.

Can creatine help increase strength?

Yes, creatine is an over-the-counter powder like substance that many athletes take because it helps supply phosphorus
to muscle cells so they can make more ATP, the main energy source for all cells. Recommended doses are 1 teaspoon per
day mixed with a liquid. People who take creatine feel stronger and often notice an increase in muscle bulk. There are also some medical studies reporting improved thinking and memory in persons who took creatine daily. It is not too expensive, costing only about $5-10 for a month’s supply. Check with your treating physician before taking it to be sure
it is safe, especially if you have kidney problems.

What holistic therapies could be tried and where could a knowledgeable doctor be found?

It is important to try therapies that fit your personality, schedule and budget and are readily available. You will need to spend some time and effort to educate yourself about a particular therapy before deciding whether it may help you. You
will need to find a licensed specialist for the particular therapy you are considering. Some doctors who are more oriented
toward holistic therapies include doctors of oriental medicine (D.O.M.), doctors of osteopathy (D.O.), naturopaths, homeopaths, licensed acupuncturists and herbalists.


Constipation- Ideas from Bay Area Support Group

Here’s an email I sent the local support group in Aug ’06:

This email will only be of interest to those battling constipation….

I received quite a few replies from group members in response to this email. I also got some suggestions (and opinions) from outside the group as well. I thought I would share those ideas and also an update on the use of the prescription drug Glycolax (Miralax) in my Dad’s case. Thanks to Sam, Sharon, and Le for their input.

Dieter’s Green Tea: This tea is a weight loss program because it causes stool evacuation. It’s powerful and you don’t take it and go to a concert; you have to plan to stay near a toilet all day. It causes gurgling and full evacuation. We use this if four or five days have passed since the last BM. Regularity is important to avoid compaction. The brand of dietary green tea we use now is Slim-Mate Tea (all natural) with ingredient Malva Verticellata (Cassia Angustifolia).

Senna Tea: I take senna tea every night (for keeping stool soft and harmless enough). You can find it at WalMart in the aisle with the other diet aides. Nothing else will work for me. I oppose the use of enemas because they take all the healthful bacteria out of your tract and you become more and more immune compromised. Laxatives that work as stimulants cannot work on people who lack the nerves that are targeted for stimulation, or worse they are working but you cannot get the sphincter to unlock causing terrible pain and blood pressure fluctuations (which, frankly can kill us). (Written by someone with MSA.)

Senokot: We tried everything five years ago. We found that Senokot (brand name) is the only laxative that helps. My husband takes two senokot tablets in the a.m., two at noon, and two in the evening. He doesn’t need to be near the toilet. After two days, if there’s no activity, then we increase the dose to 3/2/2 or 3/3/2. After a BM, we decrease the dose to 2/1/1 or resume the 2/2/2 dosage. Of course when you first start out, you need to follow the directions. After a while, you know how to monitor and manage the dosage. There are differing opinions about taking Senokot over a long period of time but my husband has been taking it for over five years and it has worked well. At Long’s, you can buy a box of 100 tablets of the Senokot brand for $31. The generic Long’s brand is $13 for 100 tablets. The least expensive place to purchase the generic (senna) is at Costco for $13.39 for 1000 tablets. The tablets contain “senna concentrate” or sennosides. Senna is a natural fiber. It is a combination of a stool softener and a stimulant. You can get info on Senokot at or 877-senokot.

Aloe Vera Juice, Prune Juice, and Senokot: We used to have a horrific time but after daily use of 8 oz aloe vera juice, 8 oz prune juice and Senokot, we have not had the same problems. We do use a suppository when necessary, but it is only necessary every couple of months or so, if that often. Someone else reported that 8 oz aloe vera juice alone taken on a daily basis has solved their constipation problem.

Ground Flax: We found that ground flax (purchased at Trader Joe’s) works great! We put a tablespoon on cereal in the morning. With the flax, my husband went from being very constipated to being pretty regular on a daily basis with regular stools. He usually has a BM in the afternoons and there is no difference in urgency. It has worked like a charm.

Bran: We sprinkle bran on our cereal. You can find bran in the supermarket or health foods stores. It should be on the aisle with cereals, most likely near the wheat germ. Senokot (the brand) also makes Senokot Wheat Bran. That product does not contain senna. You mix one scoop (10g) with an 8-oz glass of liquid, such as juice or water.

Metamucil: This natural fiber cookie can be purchased at Safeway or Long’s. It’s important to follow the directions and drink lots of fluids throughout the day when taking Metamucil. Some recommending soaking the Metamucil cookies in milk or water before consuming them so you are sure to get enough liquid in as well. It also comes in powder form.

Oranges: Oranges are very high in fiber. The white part around the orange flesh has the most fiber. You can only get the fiber from an orange if you chew it. If you blend it, the fiber is lost.

Mineral Oil: My dad’s neurologist recommended we give Dad a teaspoon of mineral oil a day. He said it was tasteless and odorless. It can be taken plain or mixed with juice. I have read that the dosage may need to be decreased if the stools are too loose or if oil leaks onto underwear. Used in this way, mineral oil is a type of laxative; it coats the bowels and stool with a waterproof film. It keeps the stools moist and soft, but does not have the effectiveness of stronger laxatives.

Sodium phosphate: I recently tried sodium phosphate (taken orally) and it seemed to work when nothing else I tried did, except enemas. Sodium phosphate can pose dangers for people who need to follow a low sodium diet or who have congestive heart failure. Be sure to look at the warnings before you try this. (Written by someone with MSA.)

Walking: Dad’s physical therapist says that by walking, you allow gravity to work and it gets the bowels moving. Indeed, before we started Dad on Miralax (see below), anytime he stood up and walked 10 feet, he felt he had to go to the bathroom.

OTC regimen recommended by my dad’s neurologist: 8 glasses of water a day; half cup of prune juice EVERY day; double or triple the docusate sodium (stool softener) gradually to a max of 300mg/day; one teaspoon of mineral oil each morning; increase exercise; try to limit the Boost High Protein as it tends to add to constipation. I asked the dietitian who spoke at a PSP conference in April ’06 if she had heard this about Boost (which is similar to Ensure); she said she had not. I asked the RN who works at Dad’s assisted living facility and she said she had heard this. (I contacted the Boost folks at There were no dieticians or medical professionals working there so no one could confirm this.) We switched Dad to Boost with BeneFiber. Boost with BeneFiber is a little pricier than “regular” Boost; I usually buy it for $9 for a 6-pack. It’s sometimes on sale at RiteAid or Albertson’s for $6.50. There are 3 grams of dietary fiber in one bottle.

Lactulose (generic): This is a prescription drug. It comes in liquid form. It pulls water from the body into the colon. This water softens stools.

Glycolax (Miralax): This is a prescription drug. It comes in powder form. It is tasteless and odorless. I mixed the powder in with a glass of OJ with fiber. It can be taken on a full or empty stomach. I started out with a half dose for two days, then gave a full dose (which is 17g or one heaping tablespoon). That produced a BM in the first attempt. Usually Dad’s BMs are every 5 to 7 days, after 10+ attempts and considerable straining/pain. So the fact that we got a BM after 3 days on the first attempt was a record! I learned this Monday that in the week since I departed UT, Dad had two BMs in his underwear, while sitting down, and was completely unaware of the need to go or that he did go. So, I’ve cut the dosage back to half. I’m keeping my fingers crossed that this was not the first signs of bowel incontinence but rather the Miralax working too well. Miralax softens the stool and increases the frequency of bowel movements by retaining the water in the stool. The pharmacist described this as a very mild laxative. I was told by the MD that prescribed this that a side effect is diarrhea; he instructed me to be in UT for a week so that I could closely monitor the situation. I don’t think this medication was very expensive since a generic form is available. One home health nurse who was visiting Dad’s neighbor was very concerned when I told her Dad was taking Miralax. She emphasized the importance of Dad drinking 8 glasses of water per day when taking the Miralax; otherwise, if an insufficient amount of liquid is consumed then the Miralax acts like a plug.

There’s a good discussion of constipation on this British website about MSA:
The use the British term “poo” for stool.

There’s a good overview of laxatives on WebMD at: … 1.aspThere are four kinds of laxatives: bulking agents, stool softeners, osmotic laxatives, and stimulant laxatives.

Date: Fri, 14 Jul 2006 01:32:20 -0700
To: [email protected]
From: Robin Riddle <[email protected]>
Subject: Fighting constipation- OJ w/fiber, Zelnorm, pastes

This email will only be of interest to those battling constipation….

Constipation is a common symptom in PD. I read one statistic that “lower bowel involvement could be one of the earliest signs of PD in some patients, perhaps preceding parkinsonism by 15 or more years.” So, it’s a common problem and probably many of you have been battling this problem long before any Atypical Parkinsonism signs appeared.

I don’t have too much to offer on the subject. My dad has this problem in spades. We’ve been very focused on making diet changes (adding fiber, adding fluids) and view the prescription drug route (Glycolax) as the last resort.

One thing I found in the grocery store in UT during my June trip there was Tropicana fresh-squeezed OJ with fiber added! I noticed that Safeway in the Bay Area carry this now too.

Also, on an email digest I receive, someone recently suggested the prescription drug Zelnorm for the problem: “Mom’s been on Zelnorm for about three months and is doing much better in this regard (constipation). It’s a medicine developed for Irritable Bowel Syndrome but works well for many sedentary people as it helps move food through the system more quickly. Most people take two tablets daily. I started Mom on a half. Now I give her a half before first food in the morning and a half before dinner in the evening. She is much more regular in elimination and stools look more normal. As has been the case for several years, she also receives 10 cc. of Docusate (stool softener) each morning. The literature and advertising for Zelnorm state that it is for women, does not work well for men. However, our visiting nurse said recently that it is now being given to men, too.”

On the same digest several years ago, the following recipe was provided for a home remedy for constipation: Mix 1 cup applesauce, half cup prune juice, and 2 T. bran. Refrigerate. Eat 1 T. daily. Some people put it on toast or a cracker. Others just take a spoonful of it.

And, more recently, this recipe was provided for an “anti-constipation fruit paste”: 1 lb. pitted prunes, 1 lb. raisins, 1 cup lemon juice, 1 lb. figs, 1 cup brown sugar, 3.5 or 4-ounce package Senna Tea (found in health food stores). Steep tea 5 minutes in 3.5 cups of boiling water. If it’s loose leaf tea, strain the tea to remove the leaves. To 2 cups of tea, in a large pot, add fruit and boil for 5 minutes. Add sugar and lemon juice. Cool. Use food processor or blender to turn mixture into a smooth paste. Place in plastic container and put in freezer. The paste will not freeze; it will keep a long time. Eat 1 or 2 T. daily.

Happy cooking!

April 2005 FDA Warning on Antipsychotics w/Dementia

This FDA black box warning from April 2005 applies to everyone with

It addresses these medications: olanzapine (Zyprexa), aripiprazole
(Abilify), risperidone (Risperdal), quetiapine (Seroquel), clozapine
(Clozaril), ziprasidone (Geodon), and Symbyax.

Here’s the FDA warning from last year:
FDA Public Health Advisory
Date created: 4/11/05
Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances

The Food and Drug Administration has determined that the treatment of
behavioral disorders in elderly patients with dementia with atypical
(second generation) antipsychotic medications is associated with
increased mortality. Of a total of seventeen placebo controlled trials
performed with olanzapine (Zyprexa), aripiprazole (Abilify), risperidone
(Risperdal), or quetiapine (Seroquel) in elderly demented patients with
behavioral disorders, fifteen showed numerical increases in mortality in
the drug-treated group compared to the placebo-treated patients. These
studies enrolled a total of 5106 patients, and several analyses have
demonstrated an approximately 1.6-1.7 fold increase in mortality in
these studies. Examination of the specific causes of these deaths
revealed that most were either due to heart related events (e.g., heart
failure, sudden death) or infections (mostly pneumonia).

The atypical antipsychotics fall into three drug classes based on their
chemical structure. Because the increase in mortality was seen with
atypical antipsychotic medications in all three chemical classes, the
Agency has concluded that the effect is probably related to the common
pharmacologic effects of all atypical antipsychotic medications,
including those that have not been systematically studied in the
dementia population. In addition to the drugs that were studied, the
atypical antipsychotic medications include clozapine (Clozaril) and
ziprasidone (Geodon). All of the atypical antipsychotics are approved
for the treatment of schizophrenia. None, however, is approved for the
treatment of behavioral disorders in patients with dementia. Because of
these findings, the Agency will ask the manufacturers of these drugs to
include a Boxed Warning in their labeling describing this risk and
noting that these drugs are not approved for this indication. Symbyax, a
combination product containing olanzapine and fluoxetine, approved for
the treatment of depressive episodes associated with bipolar disorder,
will also be included in the request.

The Agency is also considering adding a similar warning to the labeling
for older antipsychotic medications because the limited data available
suggest a similar increase in mortality for these drugs.


Here’s an article written on the FDA warning in the “Senior Journal”:
FDA Warns Antipsychotic Drugs Dangerous to Elderly With Dementia

April 14, 2005 – The Food and Drug Administration (FDA) this week issued
a public health advisory to alert health care providers, patients, and
patient caregivers to new safety information concerning an unapproved
(i.e., “off-label”) use of certain drugs called “atypical antipsychotic
drugs.” These drugs are approved for the treatment of schizophrenia and
mania, but clinical studies of these drugs to treat behavioral disorders
in elderly patients with dementia have shown a higher death rate
associated with their use compared to patients receiving a placebo
(sugar pill).

The advisory applies to such antipsychotic drugs as Abilify
(aripiprazole), Zyprexa (olanzapine), Seroquel (quetiapine), Risperdal
(risperidone), Clozaril (clozapine) and Geodon (ziprasidone). Symbyax,
which is approved for treatment of depressive episodes associated with
bipolar disorder is also included in the agency’s advisory.

FDA is requesting that the manufacturers of all of these kinds of drugs
add a boxed warning to their drug labeling describing this risk and
noting that these drugs are not approved for the treatment of behavioral
symptoms in elderly patients with dementia. Patients receiving these
drugs for treatment of behavioral disorders associated with dementia
should have their treatment reviewed by their health care providers.

In analyses of seventeen placebo-controlled studies of four drugs in
this class, the rate of death for those elderly patients with dementia
was about 1.6 to 1.7 times that of placebo. Although the causes of death
were varied, most seemed to be either heart-related (such as heart
failure or sudden death) or from infections (pneumonia).

The atypical antipsychotics fall into three drug classes based on their
chemical structure. Because the increase in mortality was seen with
atypical antipsychotic medications in all three chemical classes, the
agency has concluded that the effect is probably related to the common
pharmacologic effects of all atypical antipsychotic medications,
including those that have not been studied in the dementia population.

The agency is considering adding a warning to the labeling of older
antipsychotic medications because limited data also suggest a similar
increase in mortality for these drugs. The review of the data on these
older drugs, however, is still on-going.

You can find patient information sheets and healthcare provider sheets
on all of the drugs mentioned at this FDA web page:

Consumers can call: 888-INFO-FDA.