I'd love to hear from our members who are trying special diets because of PD.

[Joanne_Joyce]

What benefits are you experiencing that you can attribute to your diet?

[hilarypeta]

Best i ve learned is vegetarian,gluten dairy and sugar free. Plenty of water and oils...coonut, argan,olive...beans, nuts veg and fruits

[Joanne_Joyce in reply to hilarypeta]

Hilarypeta, your diet sounds delicious. Have you experienced a reduction of your symptoms while on this diet?

[PatV]

I'm trying low FODMAPS because I have IBS-C related to PD. or aggravated by PD. since PD grabs any pain and runs with it! It's working but very difficult to follow. However it's working as long as I follow a whole foods approach and otherwise READ THE LABELS . Certain foods set off lower ab pain that is sometimes enough to send me to bed.

[movinngroovin]

Me too!! I don't think I have ever been able to break down these types of sugars. My P.D. of 17 years has slowed down my digestion overall even further...

[mistydog1]

I've been on the Mediterranean diet. It's a well balanced easy to incorporate into every day life, especially if you have a spouse.

[satwar]

Hi joanne,

I have been pursuing a ketogenic diet since November 2013 in a home trial to determine the effect on my Parkinson's symptoms. I am not advocating this approach for everyone, merely reporting how it affected me, as there are concerns. Of course the placebo effect can not be ruled out, but my body must have one hell of a sense of humor to be making my blood work and symptoms up.

Let me say at the beginning that I became interested in ketone therapy for Parkinson's after getting positive relief from my very bad tremor by ingesting coconut oil. This occurred in an environment where my neurologist told me there was no drugs for my symptoms. Although I had periods of relief with coconut oil I would inevitably crash and fall apart back to my heavy tremor. It wasn't until I read "The Art & Science of Low Carbohydrate Living" by Volek and Phinney that I learned that my body was overreacting to carbohydrate ingestion with too much insulin, which was depressing my ketone levels. My fasting glucose level was 140, also an indication of insulin resistance. The book indicated that I would do well by severely restricting carbs from my diet, with the added benefit of increased ketone levels in my blood and the many benefits to the brain if ketone levels can be elevated sufficiienty.

To test the connection between carbohydrate, ketones and my Parkinson's symptoms, I choose a period of time when my tremor was under excellent control while I was still taking coconut oil, and ate an orange. Within 1/2 hour I was in a horrible full body tremor, just because I ingested carbohydrate. This reaction proved to me that my body was insulin resistant and was overreacting to the presence of carbohydrate and suppressed my ketone levels, which were controlling my tremor. I decided to embark on a ketogenic diet to see if elevated ketones could improve my symptoms.

[satwar in reply to satwar]

Cautionary notes about my Ketogenic diet

Full Keto-adaptation took a very long time. I didn't receive my ketone meter until ~2 months into the diet, and my serum ketone levels were just starting to climb above 0.5 mM/l, which defines when ketones become of sufficient quantity to be of significance to the brain. Unfortunately I didn't have my ketone meter while I was on coconut oil, but others have reported achieving serum ketone levels in the range of 0.3 to 0.5 mM/l with coconut oil on a conventional diet. With the ketogenic diet I have achieved serum ketone levels of 1 to 5 mM/l, but It took me several months of experimenting with my diet to achieving these levels. You really need a serum ketone meter to figure out how different foods and eating practices affect your ketone levels.

Ketosis is a very powerful weight reduction tool, and can be scary. You can go into a significant calorie restriction and not feel hungry. I think this can be abused and cause serious damage if not controlled. One of the authors of the book has stated that you could simply waste away. I lost 25 lbs in 1 1/2 months and I successfully stopped my descent by increasing my fat intake, hence eliminating my calorie deficit.

The ketogenic diet had some nasty side effects, one of which is constipation. I have to remember to drink lots of water. I also had to be careful to supplement sodium and potassium, caused by the frequent activity of the kidney. The increased salt intake caused some swelling in my feet, the same side effect I got from Mirapex.

I found it necessary to restrict protein intake in order to elevate serum ketones. Again caution must be taken to be sensible, or you can get yourself into nutritional trouble. Another essential tool in achieving high serum ketone levels is to practice "intermittent fasting", whereby you eat all your food in a six hour time window and fast the remaining 18 hours. This is not as hard as it sounds, because you don't feel hungry on a ketogenic diet. Again though you must be careful to eat enough within the time window to remain healthy.

Another problem with the ketogenic diet is that if you break out of ketosis by consuming carbohydrates, you have to go through keto-adaption all over again. Although it might not be as long a trip the second time around becase your body already has the fat metabolism enzymes in place.

The long term effects of a ketogenic diet are not known. I have been cautiously introducing low carbohydrate berries and seeds, and I have always consumed leafy green salads and colourful low starch vegetables like brocolli, kale and red cabbage. These provide essential micronutrients. I don't think anyone watching me eat could tell I am on a restricted diet. The only "weird" thing is that I only eat twice a day and have no snacks except for coconut oil several times a day.

[Joanne_Joyce in reply to satwar]

Satwar, your experience has demonstrated a clear cause and effect relationship, eg when you ate an orange. I guess what we don't know yet is if this would apply to everyone with tremour dominant PD. Are you taking any Ldopa or othe PD drugs now too? Also, can you please tell us how the ketone meter works?

[satwar in reply to Joanne_Joyce]

Yes I am still taking my meds. I have been blessed with neurologists who haven't overprescribed drugs. I take 3x1.5mg Mirapex, 3x11/2 100mg/25mg Levocarb and 2x2mg Trihex, which is not bad for 14 years. I can feel the Mirapex working on my tremor.

A ketone meter works on a very small blood sample from a pin prick on your finger. I use the Abbott Precision Xtra which tests both glucose and ketone with the change of the test strip which analyses the blood. The meter is only $25 US, and the glucose test strips are cheap, but the ketone strips are $2 in Canada and $10 in US.

As for duplicating my carbohydrate test, that would be a tall order. I was taking massive doses of CO, 1TBS every hour (12-14 TBS per day), to achieve relief from my symptoms while eating a conventional well balanced diet. Not too many people could tolerate that much CO.

[satwar in reply to satwar]

My home trial findings are very preliminary, as I have only been on elevated ketones (ketosis) since December 24, 2013 (coconut oil from March 15 to November 5, 2013):

(1) My fasting glucose has dropped from 140 to 75. The ketogenic diet has cured my insulin resistance.

(2) Put as simply as possible, I no longer feel sick.

(3) My arms and shoulders no longer have rigidity or stiffness, because my tremor has abated. This was verified by my neurologist, and I haven't had a medication change for 4 years.

(4) My waking tremor has almost disappeared. What tremor there is usually passes after I have eaten breakfast. Compared to the full body tremor I used to awake to before ketone therapy (including coconut oil) this is amazing

(5) I no longer experience ketone crashing with the subsequent full body tremor.

(6) I can go an entire day with very little tremor. This has paid for the price of admission. The only caveat is that stress brings the tremor back out, but resistance to stress has improved and recovery to an unstressed state is quicker.

[Joanne_Joyce in reply to satwar]

This is wonderful news, Satwar. It must be a big relief to have such a remarkable reduction in your symptoms.

[satwar in reply to Joanne_Joyce]

To be honest I feel on top of the world. It was an amazing set of coincidents that led me down the path of ketones, first finding Mary Newport's book on coconut oil and then learning about Phinney & Volek book on Low Carbohydrate Living. I think I just kept asking myself why things happened, and I was ready when the answer presented itself.

[Hikoi in reply to satwar]

Satwar, i remember you being on megadoses of coconut oil. Maybe I have missed it but are you now, would be interested in your experience.

[satwar in reply to Hikoi]

Yes it's easy to miss my experiences with ketones because my posts are frequently excluded from the news feed.

I indeed was taking massive doses (12-14 TBS CO per day) to achieve symptom relief from my tremor. Unfortunately I also was experiencing intermittent relapses which were very unpleasant. I was yo-yoing between feeling really great and absolutely terrible, which was unacceptable. Not understanding my "crashes", I assumed I was experiencing low blood sugar and increased my carbohydrate (sweet potato). This sort of worked in that I didn't crash so badly, but also didn't feel really great either. I just went around feeling sort of sick, which was fine by me.

I had skimmed the book "The Art & Science of Low Carbohydrate Living" but found it difficult reading and a rather extreme diet. I then happened to find myself watching a Youtube video with Dr. Phinney talking about his book. During that interview he talked about how ingesting carbohydrate sharply depresses serum ketones because insulin is released. It is even worse if you are somewhat insulin resistant.

The light bulb came on. I was experiencing ketone crashes not low blood sugar. The rest of my story is elsewhere in this thread, and how I tested my hypothesis.

[Hikoi in reply to satwar]

Thanks for the reply Satwar

I asked because i read what you wrote here on this thread and a number of comments implied you had moved on from the CO eg (coconut oil from March 15 to November 5, 2013)

Then i read " no snacks except for coconut oil several times a day." so I guess you still take CO and at the large dose?

I too have trouble seeing threads i have written but I dont believe any are hidden i find i have to refresh the page or re log in to see them. I understand this site is basically not moderated except in response to complaints.

[satwar in reply to Hikoi]

No I don't take massive doses of coconut oil on the ketogenic diet because the fat metabolism produces ketones. I have been experimenting with some modest amounts of coconut oil and with MCT oil, as a supplement to the diet however, but have no conclusions.

I suspect I will maintain a modest consumption in the long run because of the outstanding blood work I attained with coconut oil in the past. A trusted and remarkable friend.

[Hidden in reply to satwar]

Today at lunch, I ate a large bowl of spaghetti and within the hour my right arm tremor was markedly less. I swear.

[satwar in reply to Hidden]

Yes I have also found my tremor is often less after eating.

I'm not sure why you posted this comment, but I can assure you that very few if anyone can eat carbs like that and be in ketosis. Ingestion of carbs triggers insulin which depresses serum ketone very sharply. It's the founding principle of the ketogenic diet. I would strongly recommend ".The Art & science of Low carbohydrate living:" if you are serious about exploring what ketosis has to offer. Otherwise I like your diet plan, it looks very healthy

[Hidden in reply to satwar]

I moved from a ketogenic diet, my ketone levels high as a kite, to a modified ketone diet. Still maintaining the intention for continued low carb. I have relaxed the carb somewhat. I cannot say how many carbs in that spaghetti (speaking of yesterday's lunch now) where I also had carb lunch of spaghetti. This morning my ketone stix reported that I still had small spill over into my urine of ketones.

[satwar in reply to Hidden]

If you are using urine ketone stick to determine your state of ketosis you are likely being misled. You need to measure your blood levels not your urine levels. For one thing brain cells prefer using beta-hydroxybutrate which is measured by the blood strips, but your urine stick measure a different ketone called acetoacetate. The reasons acetoaccetate are dumped in the urine by the kidneys bears a very complex relationship with beta-hydroxybutrate in your blood that is used by the brain. I'm afraid the urine stick is an uncertain and undependable way of monitoring your state of ketosis.

Consider the following description of keto-adaptation from "The Art & Science of Low Carbohydrate Living" to help understand why the urine stick is not reliable:

Ketones – To Measure or Not

As noted in Chapter 1, nutritional ketosis is defined by serum ketones ranging from 0.5 up to 5 mM, depending on the amounts of dietary carbohydrate and protein consumed. In most people, the combined intake of 100 grams of carbohydrate and 100 grams of protein will drive serum ketones well below 0.5 mM. While there is nothing magical about having circulating ketones above this threshold level, it does have the practical value of providing the brain with a virtually limitless, fat-derived fuel source. This alternative fuel is eminently more sustainable, particularly in the insulin resistant or carbohydrate intolerant individual.

Within a few days of starting on carbohydrate restriction, most people begin excreting ketones in their urine. This occurs before serum ketones have risen to their stable adapted level because un-adapted renal tubules actively secrete beta-hydroxybutyrate and acetoacetate into the urine. This is the same pathway that clears other organic acids like uric acid, vitamin C, and penicillin from the serum.

Meanwhile, the body is undergoing a complex set of adaptations in ketone metabolism[99]. Beta-hydroxybutyrate and acetoacetate are made in the liver in about equal proportions, and both are initially promptly oxidized by muscle. But over a matter of weeks, the muscles stop using these ketones for fuel. Instead, muscle cells take up acetoacetate, reduce it to betahydroxybutyrate, and return it back into the circulation. Thus after a few weeks, the predominant form in the circulation is beta-hydroxybutyrate, which also happens to be the ketone preferred by brain cells (as an aside, the strips that test for ketones in the urine detect the presence of acetoacetate, not beta-hydroxybutyrate). The result of this process of ketoadaptation is an elegantly choreographed shuttle of fuel from fat cells to liver to muscle to brain.

In the kidney, this process of keto-adaptation is also complex. Over time, urine ketone excretion drops off, perhaps to conserve a valuable energy substrate (although urine ketone excretion never amounts to very many wasted calories). This decline in urine ketones happens over the same time-course that renal uric acid clearance returns to normal (discussed below) and thus may represent an adaptation in kidney organic acid metabolism in response to sustained carbohydrate restriction.

These temporal changes in how the kidneys handle ketones make urine ketone testing a rather uncertain if not undependable way of monitoring dietary response/adherence. Testing serum for beta-hydroxybutyrate is much more accurate

[DS310 in reply to satwar]

Hi Satwar, so which blood strips do you recommend for measuring ketone levels and where can I get them? I have been using the urine ketone stix.

[satwar in reply to DS310]

I use Abbott Precision Xtra, which many say is the most accurate. Glucose may read a bit higher than lab tests.

Google will find retailers, but ketone strips are far cheaper in Canada ($2 versus $10 in US each)

[Hidden]

Neupro (rotigotine transdermal system) only if you must and only after YOU do thoroughly research the benefit or not of various medicines, their side effects, the period they are effective and alternative treatments. /do not simply rely on your doctor's advice.

Myself, I chose coconut oil and ketogenic diet. Later the diet was changed to include more carbs, berries/fruit and greens. NO sugar or fructose.

kale, cabbage, broccoli, cauliflower, brussels sprouts, collard, onions, liver (organ meats), seaweed.

Restrict daily carb intake to 50g. max. or less.

Vitamins: Flaxseed 1000mg, C 500mg, E 400iu, D3 5000iu

Coconut oil: 6 tbsps per day (or more; adjust to your experience) Recommended:2 tbsps at each meal and 2 before bed.

Heat 1/3 coffee cup of coconut milk, the variety that contains 6g of sugar, place two tbsp. of coconut oil and after it melts in a moment, you have a tasty drink not unlike hot cocoa. For that matter, I sometimes add a chunk of unsweetened cocoa for flavor.

Gel caps?

1000mg gel caps are not near enough to the dose necessary.

1000mg = 1 gram / 1 Tablespoon = 14.25g

“Therapeutic levels of MCTs have been studied at 20 grams per day. According to Dr. Newport's calculations,5 just over two tablespoons of coconut oil (about 35 ml or seven level teaspoons) would supply you with the equivalent of 20 grams of MCT, which is indicated as either a preventative measure against degenerative neurological diseases, or as a treatment for an already established case.”

articles.mercola.com/sites/...

P.S. satwar comment about carbs

I find it interesting and will continue to adjust my diet in a continuing effort to find the right balance that reduces symptoms.

[Joanne_Joyce in reply to Hidden]

RoyProp, your diet sounds healthy and tasty. Have you seen a clearcut relationship between your diet and your symptoms like Satwar did? Are your symptoms mainly tremours? Are you still taking Pd Meds.

[Hidden in reply to Joanne_Joyce]

I cannot point to clearcut (scientific) relationship other than the word of my wife saying she notices a difference.

I have tremors in my right arm. My writing is barely legible. Various other minor PD symptoms typical of stage 1 Parkinsons.

When the neurologist diagnosed my PD he gave me a sample box of Neupro. I applied the patches for maybe a week and stopped after my own research into the subject of medicine for the reduction of symptoms.

I am placing my faith and hope on CO and a modified keto diet.

[Joanne_Joyce]

Pennworthy, how does someone one with PD identify and measure a nutritional deficiency? Do we expect everyone has a protein deficieny? I don't fully agree with your statement that no one has a drug deficiency. PD involves a dopamine deficiency and that is what Ldopa drugs restore.

[hilarypeta]

Symptoms are less when i stick to it. I notice bad effects in my digestion ...constipattion etc..if i go off track.

[DS310]

I do not take any medications.

I Have been on a ketogenic diet for about 9 weeks now. From the beginning I felt an improvement in my tremors, not totally stopped at all but nevertheless an improvement that was also noticed by family members.

Two weeks ago for my daughters birthday I decided to make an exception in my diet and have a big piece of cake.

Not a good idea, my body felt really tense afterwards.

I don't get thirsty much so I don't drink as much water as I use to so I have to get better with that.

I can actually go hours without eating and not feel hungry. I have to be careful with that as I am not overweight and do not need to lose weight. I do appreciate that my body feels more relaxed.

Recently I went to the doctor to have blood work done so that I can learn if there have been any changes due to my new diet. My results came back saying my total cholesterol was high at 211 and my LDL cholesterol was high at 123.

I have never had a high cholesterol reading so I know it is due to the high fat diet. Time to tweak the diet some.

[Hidden]

For the benefit of readers:

copy

the body in a continuous state of ketosis. This is dangerous over a substantial period of time because ketone bodies are acidic and will cause a form of acidosis called ketoacidosis.

copy; but

Elevated beta hydroxybutyrate levels may also occur when an individual in on a diet that is low in carbohydrates. This is one of the causes of high beta hydroxybutyrate levels but is not harmful for the body.

The beta hydroxybutyrate range can be measured by simple blood test. Low beta hydroxybutyrate levels or abnormal beta hydroxybutyrate levels should be reported to the doctor immediately so that treatment can be started.

medicalhealthtests.com/beta...

[satwar in reply to Hidden]

The Art & Science of Low Carbohydrate Living says:

Nutritional ketosis is by definition a benign metabolic state that gives human metabolism the flexibility to deal with famine or major shifts in available dietary fuels. By contrast, ‘diabetic ketoacidosis’ is an unstable and dangerous condition that occurs when there is inadequate pancreatic insulin response to regulate serum B-OHB. This occurs only in type-1 diabetics or in late stage type-2 diabetes with advanced pancreatic burnout. In this setting of deficient insulin, when exogenous insulin is withheld, serum B-OHB levels reach the 15-25 mM range – 5-to-10-fold higher than the levels characteristic of nutritional ketosis.

Unfortunately, among the general public and even many health care professionals as well, these two distinct metabolic states tend to be confused one for another. Understanding how different they are is key to being able to capture the many benefits of nutritional ketosis while avoiding the risks in that very small minority of the population subject to developing diabetic ketoacidosis

[VTmom]

I've noticed improvements by eating a Vegan diet (staying away from processed foods/pkgs.) ☺ ok, I'm still working on getting there, I'm about 85% Vegan but striving for 100%...I'm also trying to add more Raw vegan foods. I watch what types of oils used...I find that extra virgin cold pressed is best, if using any at all. Also fresh fruits, at least 1 green smoothie and/or green with fruit smoothie per day. This helps a lot with any kind of constipation from the pills. I also add ground flax, once a day and sparingly use coconut oil & chlorella & cinnamon. I also notice that a cup of tea in the afternoon helps any type of mid-day "jitters" I might get in between pills. Hope this helps ☺

[Hidden]

The effects, symptoms, rate of progression is different among PwP. What is it that is different among PwP? Diet!

I believe diet is the key. I will continue to pursue the diet issue and search and read of the choices and results of others.

[Joanne_Joyce in reply to Hidden]

I agree RoyProp. We have a lot to learn about PD and diet. I'd also like to know if different foods affect different symptoms. For example most people reported the effect of diet on tremours. Will it be the same for those of us whose main symptoms are gait and balance difficulties?

[Hidden in reply to Joanne_Joyce]

@ Joanne_Joyce

I am watching ultrasound. I submitted an application (for updates) as I do not qualify for the current round of trials.

Ultrasound surgery for PwP

insightec.com/Parkinson_Dis...

healthsystem.virginia.edu/f...

on.ted.com/a01aj

[satwar in reply to Joanne_Joyce]

I think the most encouraging comments I have gotten from my doctors, is not the confirmation that my tremor has significantly improved, but that my GP (family doctor) declared, after not seeing me for several years, that he saw no progression of the disease. This was when my only dietary change was taking coconut oil (May 2013).

[Hidden]

Modified keto diet - site.matthewsfriends.org/in...

[Hidden]

Medicare Part B (Medical Insurance) covers screening blood tests for cholesterol, lipid, and triglyceride levels every 5 years. These screening tests help detect conditions that may lead to a heart attack or stroke. You pay nothing for the test.

[Hidden]

nutritional ketosis foods

mydreamshape.com/ketogenic-...

[Hidden]

site.matthewsfriends.org/in...

There has been a lot of speculation on whether the Ketogenic diet may be effective in other neurological disorders; a small amount of research is starting to appear. We have a Mum on site trying Keto for her child with a brain tumor, already seeing improvement!

Who knows what the future may be, perhaps Alzheimer’s patients being treated with Atkins or MCT, or Motor neuron disease patients treated with Ketocal!