New to Parkinson's? Or not new, but tire... - Cure Parkinson's

Cure Parkinson's

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New to Parkinson's? Or not new, but tired of taking supplement that don't improve Parkinson's cardinal symptoms of bradykinesia and tremor?

Levod profile image

Anyone looking for PD advice from a real doctor with decades of experience (a real expert from the Mayo Clinic!)?

You can start here with the presentation by Dr. Ahlskog:

Debunking Ten Myths that May Sabotage Treatment of Parkinson’s Disease

parkinsonsmi.org/docman/gen...

or here:

Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease

mayoclinicproceedings.org/a...

Then read his book:

The New Parkinson’s Disease Treatment Book by Dr. Ahlskog

amazon.com/New-Parkinsons-D...

56 Replies

He’s the best (IMO)

eschneid profile image
eschneid in reply to Wonky-Bride

AGREE

Ho-hum. Another doctor towing the company line.

Are all the pwp who have benefitted from B1 mistaken?

Buy his book? It's only 12 year old and his "Tips for Treating Seniors With Parkinson Disease" is 11 y.o., so if someone wants old school advice, this is the right place to go.

His recommendation for C/L dosage includes going from 0 to 900 mg/day within 5 weeks.

No thanks

Levod profile image
Levod in reply to MBAnderson

Hi Marc,

It’s disappointing that you would choose to emphasize the good doctors age rather than what he’s done to help people with Parkinson’s, and sad that you would emphasize the age of conventional medical treatments when you have absolutely nothing that is better than them to offer.

MBAnderson profile image
MBAnderson in reply to Levod

Dr. Michley and Dr. Bredesen offer better alternatives.

Levod profile image
Levod in reply to MBAnderson

Are you joking? They have a way to treat Parkinson's bradykinesia and tremor? Please do tell. Or do I have to pay them to find out?

kevowpd profile image
kevowpd in reply to MBAnderson

Dr Mischley runs a survey. There are no controls whatsoever over the inputs to the responses (are people doing precisely what it is they say they are doing) nor the outputs (are people enjoying precisely the benefits they say they are enjoying). There's a tremendous amount of subjectivity involved. And even if there were such controls, even she acknowledges that many of her relationships suffer from the correlation or causation issue.

Levod profile image
Levod in reply to kevowpd

Thanks kevowpd, but it's unclear how this is could be considered an alternative to conventional meds.

kevowpd profile image
kevowpd in reply to Levod

Oh it's not. I was responding to MBA.

Levod profile image
Levod in reply to kevowpd

ah, ok

MarionP profile image
MarionP in reply to MBAnderson

"Better" how?

MBAnderson profile image
MBAnderson in reply to MarionP

Both claim their approach produces better results, i.e., slows the progression is some people.

youtube.com/watch?v=TzJSCtt...

youtube.com/watch?v=7R3OcNL...

Dr. Laurie Mischley - PD Active Webinar on Nutrition, Neuroscience and Parkinson's

youtube.com/watch?v=qWwzETa...

I'll read Ahlskog's book. How about if you read Bredesen and Mischley?

My point is simply nutrition matters, often more than just pharmaceuticals alone.

MBAnderson profile image
MBAnderson in reply to Levod

you are right - his age is irrelevant.

jimcaster profile image
jimcaster in reply to MBAnderson

Hi, Marc! Glad to see you getting fired up about a topic! I have just two clarifications: (1) Dr. Ahlskog's book was most recently updated in 2015, so it's only 6 years old. (2) The dose escalation he proposes stops as soon as it becomes effective, so going to 900 mg in a short amount of time would be extremely unlikely. I have settled in at 300 mg (3 pills) daily and don't expect that to change any time soon. Carbidopa levodopa works extremely well for me, but I realize we are all different. That said, I have great confidence in Dr. Ahlskog. He is the doctor who originally diagnosed me in 2018. To his credit, he told me not to start Carbidopa Levodopa until my quality of life suffered, but he correctly said it would be a game changer once I did.

RoyProp profile image
RoyProp in reply to jimcaster

I own his book. I use it religiously to guide my therapy. I have learned I cannot get satisfactory service from your average neurologist . I have gone through three.

I have severe Parkinson’s effect on one tablet dose. My dose is two tablets 25:100 IR. The advice I need is the separation of each singular dose. Should I space each dose 4 or 6 hours apart? What is best as I try to keep the lowest risk of dyskinesia?

Levod profile image
Levod in reply to RoyProp

The answer is:

From Ahlskog's book.
RoyProp profile image
RoyProp in reply to Levod

Yes but the book also says between six hours.

Levod profile image
Levod in reply to RoyProp

Hi Roy, I don't know what you're referring to, can you please clarify? Perhaps give a quote, or an image cut an paste of the text...

RoyProp profile image
RoyProp in reply to Levod

are appropriate to the patient’s needs.10. LEVODOPA DYSKINESIAS ARE OFTEN BENIGN AND TREATABLE

Around the same time that the short-duration levodopa responses become apparent, patients may experience hy- perkinetic movements, primarily manifest as chorea; these are termed . Just as too little brain dopamine translates into motor slowness, too much dopamine results in excessive movements, ie, dyskinesias.

Because dyskinesias represent an excessive response to dopamine replenishment, they can be abolished by reduc- ing the individual doses of carbidopa/levodopa. Note that dyskinesias are tied to the most recent dose; thus, carbi- dopa/levodopa doses taken more than 6 hours previously have lost this dyskinesia potential.

Dyskinesias in this sense are mani

mayoclinicproceedings.org/a...

Levod profile image
Levod in reply to RoyProp

"The advice I need is the separation of each singular dose. Should I space each dose 4 or 6 hours apart? What is best as I try to keep the lowest risk of dyskinesia?"

You have to use trial and error to find the lowest interval that doesn't give you any dyskinesia (or off symptoms). Start at 6 hrs, and working you way down, in hour increments, then once you've found the number of hours, switch to 15 minute increments to find the optimized interval...

For example:

6 hr no dysks

5 hr no dysks

4 hr dysks

4 hr 45 min no dysks

4 hr 30 min dysks

4 hr 45 min is your optimized interval

RoyProp profile image
RoyProp in reply to Levod

In your opinion, I don’t get dysk currently. Should I choose the highest separation that still gives me on time. That puts dysk further away as possible?

Levod profile image
Levod in reply to RoyProp

Yes

Hikoi profile image
Hikoi in reply to RoyProp

Roy Levod is right.

And stop worrying about dyskenesia! Enjoy life.

RoyProp profile image
RoyProp in reply to Hikoi

Who? Me worry. I don’t suffer sea sickness so I’m buying a cruise on the luxury liner Titanic. 💀

Levod profile image
Levod in reply to RoyProp

lol!

ddmagee1 profile image
ddmagee1 in reply to RoyProp

I feel the same way you do, RoyProp! Dr. Ahlskog’s book is of true value, for those of us, especially, who have not gotten satisfactory service, and/or answers to questions, or quality care, from our neurologist’s! An example, I asked the neurologist, I am assigned to, about constipation and slow digestion problems, which I thought, might be caused, by PD, and the Doc said, “ I don’t do that!!!

RoyProp profile image
RoyProp in reply to ddmagee1

Constipation prevents levodopa from entering small or is it large intestine.

Despe profile image
Despe in reply to ddmagee1

Take digestive enzymes, Betain HCL and probiotics. The CAM therapy for constipation. MDs don't know squat!!

MBAnderson profile image
MBAnderson in reply to jimcaster

Hi Jim,

I recognize that you and most pwp are very well served by C/L, but next time you see him ask him if there us any science that supports the decision to take any supplements.

(We interpret his words differently. His words, "If there is not substantial improvement on the above dosage, you can try 1 more increment to 3 tablets 3 times per day." would cause the average person to feel free to go to 3 tablets, 3 times/day.)

Do you watch what you eat and/or take any supplements?

PS. to Roy's point below, all 5,000, plus the thousands who have followed Dr. Constantini, plus those on this forum who have said they have benefitted from various supplements, plus the thousands we don't know of, would be deprived of the relief they have experienced if they strictly followed Dr. Ahlskog's advice.

Isn't their relief worth something - at least a mention?

Levod profile image
Levod in reply to MBAnderson

(Excuse me Jim for butting in here!)

Marc, I am not sure what point you are trying to make.

He says in his book, he has never seen someone benefit from a single dose of 3 tabs, but realizing there may possibly be someone who does get benefit, then it is ok to try it... (he would suggest 4, 5, 6, ... tabs, if he thought someone might benefit from it.

Also, he is not anti-supplement and covers supplements and diet in the book... but I think there is nowhere he suggests that these can slow progression or more importantly improve PD bradykinesia or tremor.

But again, I am not sure what point you are trying to make.

jimcaster profile image
jimcaster in reply to MBAnderson

Hi, Marc! Above all else, I am happy to be interacting with you again on this site.! As Levod notes, Dr. Ahlskog does address diet, vitamins and supplements. In particular, he favors supplementation with Vitamins D, B6, B12, folic acid. He also recommends calcium for those at risk of osteoporosis. I take heavy doses of B1 and B3 (nicotinamide riboside, TruNiagen) and a B multivitamin with high doses of B2, B6, and B12. I also take butyric acid and melatonin.

MBAnderson profile image
MBAnderson in reply to jimcaster

Thanks Jim. You've motivated me to read his book.

Condor13 profile image
Condor13 in reply to MBAnderson

I am on 3 caps every three hours, with good effect and no side effect at all, and I take no supplements.(Actually I am on Prolopa, which is the same as Madopar, but come sin capsule, not tablets). My dose was slowly increased, and supervised by a Movement disorder Clinic.

MBAnderson profile image
MBAnderson in reply to Condor13

I'm glad it is working so well for you.

RoyProp profile image
RoyProp in reply to MBAnderson

There are over 5,000 members supporting the efficacy of B1 in my Facebook group, Parkinson’s thiamine hcl.

Marc, in fairness I think the book should be read before being commented on.

true enough. I will read it.

His listing of myths is mostly beneficial, but his myth number seven is grievously wrong, widely accepted by MDs, and has been detrimental to countless patients:

"Myth #7 Controlled-release carbidopa / levodopa is preferred (Sinemet CR)

Facts about the CR formulation:

1. Effect: 60-90 minutes longer than regular carbidopa / levodopa

2. Slow to kick-in and more erratic

3. Complex interactions with food

4. Not a mg-to-mg correspondence with regular carbidopa/levodopa"

Taking these point by point:

1. Yes that is the point of CR which is why it is better for infrequent dosing

2. Yes it is slower to kick in – patients who use it allow for that. I have not seen any evidence that is "more erratic"

3. Not in my experience

4. True it is not a milligram to milligram correspondence - take a bit more. Better yet, simply starting with the CR version moots the issue of needing to find an equivalent dosage.

Here is a study that confirms the advantage of CR:

Comparison of Immediate-Release and Controlled Release Carbidopa/Levodopa in Parkinson’s Disease

A Multicenter 5-Year Study

pubmed.ncbi.nlm.nih.gov/901...

"Activities of daily living scores in the Unified Parkinson Disease Rating Scale (UPDRS) consistently favored the Sinemet CR treatment group and a number of the NHP scales also favored the CR group. ... There was a statistically significant difference (p < 0.05) in activities of daily living as measured by the UPDRS in favor of Sinemet CR."

Levod profile image
Levod in reply to park_bear

Hi PB:

IMHO, it is not "grievously wrong". I think IR is simplest, cheapest, will give the most reproducible results, is quicker acting, and will work great in most patients (e.g., those with bradykinesia and tremor) for years...

park_bear profile image
park_bear in reply to Levod

Is that your personal experience?

Levod profile image
Levod in reply to park_bear

It is the conclusion I reach based on my experience and understanding of PD progression.

Put another way, I would say before your honeymoon period is over, IR should be fine.

Despe profile image
Despe in reply to Levod

Now you're talking like a doctor!

eschneid profile image
eschneid in reply to park_bear

PB.....my experience with CR (50/200) is I cannot exercise/function well, just does not get me over the hump so I only use it at bedtime to help get 4-5 hours sleep. I can "count" on my IR+mucuna routine for duration and consistency in that 2+ hour window of my day. Usual obstacles like protein, supplement interaction (you mentioned b6 earlier) are major negative factors. I wish I could spread doses to 3-4-5 hours with CR, but the pd monster says NO WAY👹

Hikoi profile image
Hikoi in reply to park_bear

PBPeople here (including me) have their favourite mantras that they recite and yours is long acting cab/lev but I think you would be hard pushed to find many who agree with you. In my experience immediate release is by far the most popular through out the world. I happen to prefer controlled release Madopar but I dont push it because I have no reason to do so. I think it is better later in the disease. I find Ashog’s points interesting and relevant.

The book may be 10 yrs old but you are quoting a study from last century, 25 years old.

park_bear profile image
park_bear in reply to Hikoi

It is not my intention to push controlled-release versions on people who are well served by immediate release. My objection is to doctors prescribing immediate release by default for infrequent dosing without so much as a mention of the alternative so the patient knows that there is one.

Studies do not have an expiration date. Everybody here has got in opinion on this matter including you, me, and Doctor Ahlskog. Opinions are not evidence and that includes Doctor Ahlskog's. Studies are evidence. We hope that doctors' opinions are well-informed by the evidence, but it ain't necessarily so and this is a case in point. In this case we have a study which followed 618 patients over a period of five years. As posted above, it found:

pubmed.ncbi.nlm.nih.gov/901...

" Activities of daily living scores in the Unified Parkinson Disease Rating Scale (UPDRS) consistently favored the Sinemet CR treatment group and a number of the NHP scales also favored the CR group. ... There was a statistically significant difference (p < 0.05) in activities of daily living as measured by the UPDRS in favor of Sinemet CR." On other measures the results of the two formulations were similar.

However I am not only one at-large to cite this study - it was subsequently cited 304 times by different researchers.

scholar.google.com/scholar?...

I took a look and did not see any subsequent study contradict the one cited. If you have contrary evidence in the form of other studies, show it. If doctor's opinions were as good as double-blind studies we would not need to bother with the extra work involved. That is not the case - investigator bias is all too real a factor.

Hikoi profile image
Hikoi in reply to park_bear

youtu.be/oZjqKvfqM_k

A lot happens in 25 yrs of Parkinsons research. We even discover that genes are involved since that paper was written. This video talks of the developments in the last 10 years. I found it very interesting, what about you?

I ask my Facebook group, Parkinson’s thiamine hcl, to read the good doctors book.

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic, thirty-years experience.

Number Two:

Title: What Your Doctor May Not Tell You About(TM): Parkinson's Disease..

Author: Marjama-Lyons Jill M MD

Number Three:

Managing Parkinson's Mid-Stride: A Treatment Guide to Parkinson's

If managing your Parkinson’s has become more challenging than it used to be, the book Managing Parkinson’s Mid-Stride: A Treatment Guide to Parkinson’s is for you. This book explains why symptoms may get better and worse throughout the day and how to treat and cope with them. Find answers and read tips and stories that can help.

secure3.convio.net/prkorg/s...

Number Four:

Medications. A Treatment Guide to Parkinson’s Disease

Number Five:

“Stop Parkin' and Start Livin'" -Reversing Parkinson's disease symptoms.

John D. Coleman, ND

In 1988, the U.S. Food and Drug Administration (FDA) recommended that the daily dose of Sinemet should not exceed 800 mg per day, and as of 2013, this recommendation has not been revised. In 2018 the labeling of Sinemet recommends not exceeding a levodopa total daily dose of 2,000 mg per day. As movement disorder specialists, general neurologists and primary care doctors have learned, many people with Parkinson’s can easily tolerate the higher doses used to minimize symptoms. Some people

with PD encounter problems with insurance reimbursement of higher daily doses because of the FDA regulation. An insurance decision can be appealed if necessary.

parkinson.org/sites/default...

I've read several books on Parkinson's and quite frankly I don't find the amount of substance in any of them to be more than what could be written in a pamphlet of a few pages -- 90% fluff.

Levod profile image
Levod in reply to MBAnderson

I assume you have not read the Ahlskog book. It is essentially all substance.

MBAnderson profile image
MBAnderson in reply to Levod

Levod,

Since there is a very finite number of pharmaceuticals (all of the content of which is readily available and all of which doesn't take up but a few pages,) how can that be?

Levod profile image
Levod in reply to MBAnderson

If your really interested, I suggest you get the book.

You can have it in a matter of milliseconds for a steal of $14.57 (ie, kindle).

MBAnderson profile image
MBAnderson in reply to Levod

OK, one more can't hurt

Excellent help and guide, for those who are diagnosed with PD!

A video where Dr Ahlskog talks about his "Cheaper, Simpler and Better" paper:

youtube.com/watch?v=blAmR79...

I know of no medication or suppliment that slows down the progression of Pd and definitely not reversing any of the symptoms. There have been many trials on exersise that do just that;

Look at this:

healthunlocked.com/cure-par...

I have overcome many of my symptoms, and have lived without any Pd medicatukion since 2002. I am now 87 and still walking well. contact me and I will give you a lot more infpormatiom

Thanks

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