Came across his website: fight-parkinsons.org/
It seems like he is promoting amino acids according to this article which criticizes his approach
parkinsonslife.eu/fight-par...
Just wanted to pick your lovely brains if anyone is familiar with his protocol.
I looked at his site early on in my PD career. There is a video interview of him with a US based PD exercise coach, where he politely listens to her detailed explanation of her multi-faceted approach to exercise, when he just wanted her to say "yes, it has to be intense". He appears to have controlled his PD and come off meds through diet and other stuff. So far so good. My reservations were the diet stuff is gluten free, towards Keto and very obviously Perlmutter influenced, and he then finds "so much more" which would have you rattling if you followed all the supplements. It seemed like he had picked up every medication avoiding PD guru on the net and followed all of them and ended up with 100 things to do (John Gray would appear to be another important influence). I nearly forked out a shilling to access the priviliged sections of his web site, then decided I hadn't got pill cupboards big enough, and I would research the sources.
He appears to have ruffled a few feathers for apparantly advocating a med-free approach, which pretty obviously may well not be suitable in many situations. I think he means well.
Appreciate your researched opinion Winnie. All those gurus and approaches can become mind boggling, although at this point I am actually leaning toward gluten-free diet. I feel it might be one of the puzzle pieces in prevention of leaky gut/leaky brain. Would love to know your reservations about gluten free diet - then I may not feel so guilty about falling off the gluten free wagon for an occasional butter croissant 
I ate gluten free last year for about 4-5 months, then fell off the gluten-free wagon over the Nov/Dec holidays. I am back on it now for about a month and do feel better. Sleeping better too. I can live without bread; pasta I love but there are better and better options out there as manufacturers are catering to this market. My acupuncturist who has encouraged me to eat gluten free says it takes 6 months to fully get gluten out of your system. She says there's no such thing as eating a little gluten, although after 6 months some people find they can tolerate ancient grains such as faro.
I got 90% through a reply on my phone yesterday and lost it. There is considerable evidence that low carb diets are harmful , in large part due to lack of fibre from grain. So avoiding gluten presents a challenge there
sciencedaily.com/releases/2...
And there is much to suggest the gluten free fad is just that - a fad
health.harvard.edu/staying-...
abbeyskitchen.com/non-celia...
thedailymeal.com/healthy-ea...
A couple of quotes
"Eliminating gluten will probably mean you ingest a lot less fiber in your diet, which could actually cause more problems with your digestion in the long run. Hello, constipation!"
"Missing out on vital nutrients. Grains are fantastic sources of key dietary fibres, antioxidants, and B vitamins. Without proper counselling (or even a legit reason), you may be missing out on these key nutrients."
I am wary of the idea that a benefit from diet change takes 6 months to manifest. In the case of true gluten intolerance (celiac disease) it takes 6 seconds to manifest. Apart from the active health risk from gluten avoidance, my personal battle to defeat PD involves minimising its impact on my quality of life. And giving up gluten, UNNECESSARILY (ie without REAL benefit) would be another victory for PD.
I tried gluten free for 3 weeks. It was easier than I thought. I felt zip benefits, and more to the point zip adverse consequences from subsequently gluten binging. I have changed my diet, and it has less gluten and less carbohydrate, but focussed on eating a mediterranean whole food diet. So far fewer lunches of white bread and cheese, breakfasts of croissant and jam. Now its salad, or vegetable soups with a small slice of whole grain bread. But maybe 1 croissant a week, a few beers at the rugby, and if Pizza is the only food on the menu when out, then a pizza.
And as with keto, I am wary of an artificial diet that would not have been our natural one through evolution. Our pre-historic ancestors may not have cultivated modern wheats, but they ate wild grains
Thank you Winnie for the detailed reply even after loosing your first reply on the phone - must be very frustrating. I agree that GF diet is not necessarily a healthy diet especially if heavily based on rice (which can be high in arsenic) and starches with high glycemic index. I started looking into this diet when my friend who suffered from swollen painful ankles, suddenly got complete relief after just a week on GF diet. Then I found out that gluten predisposes some people to autoimmune diseases which in my friend's case was arthritis (she had no gastro-intestinal symptoms). Eventually I had done genetic testing and discovered that I have heterozygous HLA-DQ gene which supposedly can increase chances of developing celiac by 10 times "normal population" - unfortunately in the beginning celiac is mostly asymptomatic until it reaches a certain stage. And since there are some theories that PD may have autoimmune origin, I feel it may be good to abstain from gluten especially that most grains are heavily sprayed with pesticides. The only glutenous grain I use occasionally for cooking and baking is organic einkorn flour imported from Italy.
I greatly appreciate Colin's overall philosophy and approach.
I distrust this site; for someone supposedly about widening the availability of options and giving alternatives his evidence is pretty thin. And I have severe doubts about both the quantity and quality of his 'research'.
Hi there, yes I have looked into his approach too. I think he is doing what is working for him, just like John Pepper, they have made changes to their lifestyle and feel better for it. As far as I know he is not selling anything, yes you pay to be a member of his website but you can join for a free 'look around' period which is what I did. I feel we need to be careful about dismissing others because they have been brave enough to say what has worked for them and have decided on an alternative journey for themselves, we are all free to educate ourselves and make up our own minds, we can try some of the things others have said have worked for them or we can decide not to, no one is forcing anyone to do anything. I am glad the "outliers" are out there.
If it works for you, then keep doing it ! But one should never dismiss the vaults of research showing that life style choices , psycological approach and CORRECT excercise can have. Real research, real solutions
I agree wholeheartedly with PEB69.
My wariness of Mr Potter hasn't diminished after watching his latest video "My diet it aint what you think..."
It's only 1 minute 12 seconds long, and includes the following questionable statements presented as facts (with the implication that the speaker has some idea what he's talking about)
1) "Fats are what our body runs on" - so why did nature make human milk contain only 4.4g fat, and 1g protein, but 7g carbohydrate (all sugars) per 100g???
2) "We need plenty of cholesterol...low cholesterol being another cause of PD". So much stuff to contradict this but for now my blood test results with cholesterol levels of around 7 or 8 for at least 20 years
3) Including meat as fats. Meat in particular is protein - the muscle flesh bit. The fat on meat we usually call fat, not meat. Our bodies use proteins fats and carbs for many different purposes and we need a balance of all of them (hence breast milk) but all 3 CAN be used as fuel. Fats have about 2.5 times the energy per gram of carbs or protein. Carbs are fast burn, fats a less readily available source. Protien - long story, short version, shouldn't be burned as fuel. It is unhelpful to call meat (which I think of as the lean bit) fat, when its protein.
Hear, hear!
What concerns me the most is Colin Potter doesn't make it clear what his criteria are for assessing the quality of the evidence he finds in his research, how he determines what might work for him nor what the criteria for inclusion in his research & measuring effectiveness may be.
Much of what he says, does and reports on seems to always be measured up against the results he got from doing something. Basically it's too subjective, and his use of language is geared to make it sound as if what works for him will work for everyone else, and better than anything else. I'm not seeing much in the line of metaanalyses of double-blind, placebo controlled RCTs from his research so far either.
Sad to say Mr Potter and I are going to sadly have to agree to differ again on the video; for a start I've always been under the impression what our body actually runs on is actually ATP or Adenosine Tri Phosphate..... a carbohydrate - AKA sugars. Fats are how the body stores energy - but it is ATP that provides the cells with the energy they need to perform their function. So not quite there I think!
I am not a big fan of ketosis. Simply put, I have no desire to have Parkinson's AND fatty liver disease and/or clogged arteries and/or a heart attack, etc. So you won't find me drinking and eating saturated fat or even veg oils. I even saute with water. (Yes, it works great.) I get all of my essential fatty acids from seeds, nuts, avocados, etc.
But the idea that ketosis isn't able to fuel cells isn't quite true. As I'm sure others will point out, it's not quite that simple. From Wikipedia:
"Ketone bodies can be used as fuels, yielding 2 GTP and 22 ATP molecules per acetoacetate molecule when oxidized in the mitochondria. Ketone bodies are transported from the liver to other tissues, where acetoacetate and beta-hydroxybutyrate can be reconverted to acetyl-CoA to produce reducing equivalents (NADH and FADH2), via the citric acid cycle. Ketone bodies cannot be used as fuel by the liver, because the liver lacks the enzyme β-ketoacyl-CoA transferase, also called thiophorase."
Those who promote ketosis often say that the heart always uses ketosis even for those not in ketosis. That isn't quite right either:
"The heart preferentially utilizes fatty acids as fuel under normal physiologic conditions. However, under ketotic conditions, the heart can effectively utilize ketone bodies for this purpose.[9]"
What about the brain?
"The brain gets a portion of its fuel requirements from ketone bodies when glucose is less available than normal (e.g., during fasting, strenuous exercise, low carbohydrate, ketogenic diet and in neonates). In the event of a low glucose concentration in the blood, most other tissues have alternative fuel sources besides ketone bodies and glucose (such as fatty acids), but the brain has an obligatory requirement for some glucose.[10] After the diet has been changed to lower blood glucose utilization for 3 days, the brain gets 25% of its energy from ketone bodies.[11] After about 4 days, this goes up to 70%[12] (during the initial stages the brain does not burn ketones since they are an important substrate for lipid synthesis in the brain)."
Did you catch that last part? The brain first tries not to burn ketones, because they are used by the brain to synthesize lipids (the brain's structures are largely made out of lipids). So what happens if you push past a few days and force the brain to burn them? Must be bad or it wouldn't resist using them as a fuel source. Similar questions arise about long-term effects of ketosis on other organs.
Thanks but no thanks.
I've met Colin. He is very genuine, he reversed his own Parkinson's (and came off medication under medical supervision once he was vastly improved) by researching everything he could find and, as someone here says, trying it all! I think he genuinely just wants to pass on as much knowledge as possible in case it can help others.
I have no problem with CP saying "this worked for me, try it if you want to" . I have more problems with him calling meat fat, or saying our bodies need to avoid carbs, or Parkinson's brains need cholesterol.
My partner's the one with PD. We found Colin's website in its early days and he took a large variety of pills as recommended which certainly improved him. Over time, we have altered them a bit and kept it manageable. Also, he has taken just 12mg ropinirole for over 5 years which is unusual. In the last 4 months, however, he has deteriorated and is off to Terapia Parkinson in northern Italy for 2 weeks very soon. This will give him 2 weeks' intensive physical therapy which we have high hopes for:
Article about dental amalgam, Parkinson's and medicinal cannabis
Does anyone take Vitamin K2?
Anyone know about licorice?
What is happening with this research does anyone follow this?
6 Myths and Facts About Dyskinesia in Parkinson’s Disease
