Parkinson's Movement
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Hi! I’m 66, probably had PD for 50 years, diagnosed 7 years ago. I’m using KETO diet to fix PD - 3 days into ZERO meds, feeling pretty good

Hi! I’m 66, probably had PD for 50 years, diagnosed 7 years ago.  I’m using KETO diet to fix PD - 3 days into ZERO meds, feeling pretty good

I had several symptoms of Parkinson’s Disease as a teenager, but played Squash and later Racketball all my life and didn’t get the tremor until 2009. Took 2 years to get the dreaded diagnosis and then took increasing doses of Ropinirole and Sinemet as prescribed by the neurologist. Basically I ignored the PD and got on with my life until the vicious back pain induced by the muscle tension started to seriously interfere with my quality of life. It’s quite inconvenient being unable to walk until you’ve spent an hour or two on a heat pad at maximum power EVERY morning! Then I decided to try the Ketosis Diet recommended by Colin Potter. I’ve been eating no carbs and lots of fat for a fortnight and gradually reducing from 16mg of the dopamine agonist Ropinirole and 12 Sinemet down to ZERO meds for the last 3 days. I’m feeling a bit lethargic, but it is 30degC to be fair and I’m still able to play Racketball - with 2 rackets, hence my handle: 2bats. I’ve ordered some vitamin B5 as they say it helps with lethargy when changing from running on sugar/carbs to running on fat. Initially I felt very jittery and I find it takes 20 minutes to stop my left arm jerking when I start playing Racketball but the great news is that the vicious back pain is fading fast because the leg and back muscles are no longer tight as a drum. Another sufferer mentioned shoulder issues and I’ve had rotator cuff surgery on my right shoulder twice, lost the long biceps and the supraspinatus on the right arm and had to learn to play left-handed - and then lost the long biceps on the left arm so now I play with 2 rackets, which is curiously satisfying:). I spend the UK Winter in New Zealand and play Squash there but because of the volley serve I just use one racket with whichever arm can play forehand for the shot.

Having researched Ketogenesis my belief is that SUGAR is POISON and our modern diet is directly responsible for most illness. I’d be fascinated to hear whether others have succeeded in getting their lives back and I strongly recommend giving the KETO DIET a try for a month. You can buy 50 ketostix for a fiver - what have you got to lose?

Oh - it will also improve your waistline, I went from 72kg to 67kg in a fortnight, without losing any muscle...

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2bats I love your outlook on life. I love your way of expressing yourself.

You’ve had quite a journey. I’d love to ‘do’ the diet. My hangup is Sugar.

It’s increased in the last 2 years only. Was pretty good until something was nagging me to buy Coke ...hated it all my life. I enjoyed it so much I think I’m addicted. I do pass it by from time to time now, trying to be strong.

I live in Queensland Sugar Cane Farms keep this town going. The crop is being cut as I write and so pretty with its Lilac flowers although if you suffer with Hay Fever best to stay indoors.

I was diagnosed 2005 but it was smooth sailing until about 2 years ago. I’m feeling like ‘I’m up the creek without a paddle’. It’s quite awful.

3 falls in 8 days. First black eye, bruising, cuts and a lump on my head. It happens so quickly. My Neurologist told me that that’s the way most PD recipients leave this paradise and now I know what she meant. I have no idea of what’s ahead and I don’t want to know.

I had a smile reading your post so post more for us all to pick up your vibes.

HGE

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Once you settle into the keto diet, you'll find that you get used to doing without sugar and also that you won't miss it.

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We must try 2bats diet I think.....

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I hope you have or are trying to and can quit sugar. Dump corn syrup, too.

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Very interesting, especially the bit about coming off the medication. We are told that we must never come off the medication. I have done so, but I only succeeded doing so after 8 years. I am on the HFLC (High Fat Low Carb) diet, not too strictly, but I did come off the Sinemet after 2 years of taking it every day.

We are all different, which can mean anything, but unfortunately some people use that as an excuse for not really trying to do something about their Pd. Taking pills is the easy way out, but it gets us NOWHERE!

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Hi JohnPepper, Thank you so much for the response - I’m delighted to make contact as I’ve read a lot about you and admire your determination. Like me, you don’t take what the medical profession says at face value! Isn’t it extraordinary that we don’t see what should be blindingly obvious - what we eat has a huge impact on our health. When you look around at the general population you can see that even if they are not afflicted with Parkinson’s Disease or MS or ALS or any of the other TLA*’s they are almost all in terrible shape and they could be so much better. * Two/Three Letter Acronyms

I’m really annoyed that it took me so long to discover KETO and hope that I can repair the damage I’ve done with 7 years of prescription medication...

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2bats, you’re right on! I am addicted to sugar, but thirty years ago, after a bout of cancer and my weight ballooning up 80 pounds over what is healthy, I got off sugar almost completely with the help of a group, lost the weight, then a few years ago decided that I deserved to taste ice cream again. Since then it’s been a struggle. I go a few weeks, then give in to some gooey dessert. I’ve been sugar free for two weeks and counting. I’m convinced that sugar and its effect, inflammation causes PD in some people. I’m not willing to give up grains and starchy vegetables but I eat mostly whole grains, small servings.

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WE have been discouraged from eating FAT. Fat is the most satisfactory food to eat. It does not burn up immediately, leaving us craving more. Change your mindset!

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Yes! Avocados, nuts, organic butter, whole milk yogurt, bring it on!

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Well done! Keep up the positive thinking! Our bodies tell us everything we need to know, so let's start listening to them!

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It's so true 2bats that we don't pay enough attention to our health - I've always loved reading about health things and knew a lot of what was good or bad for us but never put it entirely into practice. Now I'm so sorry I didn't but no use moaning, I haven't taken any medications as yet but I've only got an essential tremor in my jaw, though have noticed a few finger trembles in my hands of late. Want to get onto healthy diet, etc. as soon as possible. Suffering Socks

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John,

I agree with you, coming off the medicine is very interesting, I would like to hear how he managed it.

Best wishes,

Paul

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Hi Bridielena, It’s strange, but we are often addicted to things that are bad for us. Please use the mindset that SUGAR IS POISON. I also had a sweet tooth, but I just don’t miss it a bit now I’m off the lethal stuff. You can do it, Just clear the fridge and the cupboards of all the carbs and go keto. I know that this won’t play well in Queensland, but Big Sugar is right up there with Big Tobacco - they just don’t have any morals or ethics, either of them...

You only get one life - get yours back!

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Can you enjoy a beer?

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Carbs! Switch to Vodka for ur spirits?

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No thanks . Only a beer now and then. It does get very humid here which adds to PD stress. I had heard though, beer was ok for us and I silently said ‘thank goodness’.

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In the UK there’s a non-alcoholic beer called Becks Blue - .05% alc and 8.5g of carbs per 275ml botttle. Tastes really good when ice cold and cheap too. I’ve never liked spirits, so the only items in the bar I can consume are the Becks and the peanuts!

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Thanks. There is one here similar to that I think .. we can only buy alcohol at special outlets not in supermarkets but that is where I can get this ‘beer’ . Have tried it....it’s ok .....I’m in Queensland . Some of the other states have supermarket alcohol outlets.. Not important really but I did read where a beer is beneficial for PD. So many contradictions though.

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Not too often!

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I don’t and only in Summer. Maybe 2/3 a week.

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Can you explain why you think you had Parkinson’s so long ago, and so young? Thanks!

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I had constipation from childhood, lost my sense of smell in my twenties, would occasionally get shaky hands from my teens, sweated more than anyone I’ve ever seen when playing Squash and crucially never had a dropshot, which I regard as very significant as it indicated a lack of motor control as did my inability to ever write in a properly formed style. Plus alopaecia, Reynaud’s, shoulder damage and as a side note I used to eat an enormous amount and never put on weight. I know I’m missing some other things, but cannot remember them at the moment! I used to think the PD was caused by a serious motorbike accident when I was 17 - now I’m not so sure, though I’m sure it didn’t help:)

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Thank you for replying so quickly! My husband is 78, officially diagnosed about three years ago. He is tremor dominant, and still doing well. But your post about having PD since you were a teen was interesting. He didn’t have anything definite but has always jumped or “jerked” an excessive amount when falling asleep, since we first married. He was 32. He also has never been able to put on weight and is very slender. He has always walked sort of leaning forward, and with shorter steps, and when the Dr was first examining him, she said his gate was pretty characteristic of PD, but I said no, he’s always walked that way! He was very, very focused at work, and never was a multi-tasker, but almost concentrated in a way that seemed a little more than normal. (He’s a retired veterinarian) When we were with other people, I’d have to sort of elbow him to keep him paying attention and interested in the conversation, as he often seemed to be looking out the window or “daydreaming” about something else. He has suffered for years with leg cramps, mostly at night. He’s had shoulder problems in his tremor dominant arm for years. Lots of things that make me wonder if there isn’t at least some “pre-conditions” or characteristics that point to Parkinson’s, when taken all together. He’s still an exceptionally intelligent and driven individual, and like you, I think his outlook on life is a great blessing for him (and me) in dealing with this little “beast” that has now has a name, in our lives! Sorry this is so long. But knowing these things may help someone in the future. I sure hope so!

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I agree, I feel that it should be possible to look at a cluster of oddities and say - check for Parkinson’s Disease or whatever. I do recommend the Keto - have you tried it?

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I’ve tried it a little, but didn’t do it very well. It’s just too drastic a change, I’m afraid. My husband has not. And he’s so thin that I’m afraid he’d lose too much more weight on that diet. We do try to eat well and are not into much junk food.

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I too struggle to keep weight on but only in the past two years. I was diagnosed 18 months ago but had noticeable symptoms since 2014. Why does PD cause weight loss?

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The recognised cluster is loss of sense of smell, bowel problems, ream sleep disorder and depression.

There are some non motor symptoms of pd here but a number of other observations people have noted here are not recognized as PD symptoms.

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I was interested to read in your post that your husband suffered for years with leg cramps - I have also suffered with leg cramps for years, always wear warm socks to bed, do stretches and now take Magnesium tablets. Have heard that you should have a drink before retiring which should help so am doing that also with good results. I agree that there seems to be little symptoms which crop up before you're actually diagnosed with PD.

Suffering Socks

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Hello 2bats ,

How long on the diet did it take you to take meds out?

Thank you in advance for your response

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I started the Keto Diet and simultaneously started reducing the meds over 2 weeks. I’ve been off all meds since 4th July (5 days) and feeling pretty shaky, but my back doesn’t hurt nearly as much, my skin’s improving and overall it’s good. I’m waiting for some B5 Pentathenic Acid to be delivered as that is said to help with lethargy from the diet and I’ll also try B1 Thiamine as that is supposed to assist too. I’m only just in ketosis according to the ‘stix so I’m going to be even more careful about the carbs - and fast a bit as well.

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I find that people say I’m thin because they’re comparing me to a generally obese population. I did lose 5kg - going from 72kg to 67kg in a fortnight on the Keto Diet (height 180cm) - but basically I just lost the belly and the muscle stayed the same. So my weight is now stabilised at 67kg and not decreasing any more at all. Parkinson’s Disease weight loss is probably caused by the tension in the muscles just burning energy constantly, plus other factors like depression and lack of exercise. It’s a pity that tense muscles don’t lead to increased strength!

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For all the folks that read this thread . . . the neurological benefits of a ketogenic diet have long been known, and there have been numerous posts on this forum from people who tried a ketogenic diet and felt there was a benefit. Here are just a few of hundreds of related studies and post:

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ncbi.nlm.nih.gov/pubmed/157...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

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The obvious question anyone trying something new to treat their illness should ask is why it may be effective, and until recently there was little research on this topic. A paper published in 2017 offers one possible answer:

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Ketone-Based Metabolic Therapy: Is Increased NAD+ a Primary Mechanism?

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ncbi.nlm.nih.gov/pmc/articl...

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Here we outline the overall implications and evidence for a rapid

and region-specific change in NAD+/NADH as a direct result of

consuming a KD. We hypothesize this as a new and fundamental

addition to potential key mechanisms underlying beneficial

antiseizure, neuroprotective and disease-modifying effects of

KD. Because NAD+ can modulate ion channels, enhance

mitochondrial health, decrease oxidative stress, and impact gene

expression, an increase in NAD+ and/or NAD+/NADH ratio is a

mechanism that can account for several diverse (and seeminglyunrelated)

effects of ketogenic therapy. Furthermore, benefits

of increasing NAD+ such as life-span extension and enhancing

cellular health have long been documented (Lin et al., 2000),

and pharmaceutical companies are currently manufacturing and

selling supplements that contain NAD+ precursors such as

nicotinamide or nicotinamide riboside in an attempt to increase

endogenous NAD+ levels and enhance metabolic resilience—an

outcome that may also be achieved physiologically by ketogenic

strategies.

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What does all that mean? It means folks should read my other post on Niagen and consider trying the vitamin. Also contrary to common belief on this forum Niagen (nicotinamide riboside) it is not simply another B3 like niacin (niotinamide), and one does not have to take a B complex to see benefits.

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cell.com/cell-reports/fullt...

scienceofparkinsons.com/201...

healthunlocked.com/parkinso...

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Niagen is a simple over the counter vitamin that has scientific proof it MAY slow the progression of PD. Not sure why everyone doesn't take it simply as a precaution. It CAN NOT reverse symptoms or make you feel "better" other than thru a placebo effect.

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HOWEVER, science says boosting NAD+ MAY help your cells repair themselves and thereby slow your PD.

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How would you know? You can't. There's no way to feel a slowing of progression.

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Joe in NY

P.S. Calorie restriction has also been shown to have the same benefit as a ketogenic diet.

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Thanks Sunvox - I’ll go through everything you’ve sent - I’m most grateful for you taking so much trouble. Best regards

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Q? For Sunvox - is nicotinamide just as good as nicotinamide rhibose as a NAD+ precursor?

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No.

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That is one of the primary issues why this is a "new" B3 and why Simon felt a need to write a second article on nicotinamide riboside specifically. In one of the links above there is a chemical diagram that shows where NR falls in the molecular process that creates NAD+ and NADH. NR is further along in the cycle, and the most recent research indicates this makes it a more efficient booster of NAD+ which is the ultimate desire Also NR is a Sirtuin activator and niacin is a Sirtuin inhibitor. Sirtuin activation is one cellular process that is best known for benefitting from resveratrol and other stilbenes that also appears to have neurological benefits. However, as you read in the line about brain cancer, there is always some confounding alternative research, and that is the case with Sirtuin activation. Personally I think the best we can say is Niagen MAY be helpful and the benefits seem to greatly outweigh any potential danger so until science proves otherwise I will continue to take 375 mg a day.

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Thank you Sunvox. I know you're a bit of an advocate for NR. Can you, personally, feel a difference since you've been on it? Or do you just feel like you're not getting worse?

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Short answer: yes 100%

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I originally joined this forum because I got banned from a forum in the US (Living with Ataxia) (I know . . . hard to believe right :D ) I got banned because I wrote a post claiming a "partial cure" for my illness. I then got banned here for a few days for making the same claim and ultimately I realized if I used the words "alternative therapy" and told people never to try something without first consulting a doctor then the mods would be happy.

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Anyways, back then I had already gotten rid of 90% of my symptoms and I was only taking 2 supplements: trehalose and niagen. Originally I started with just trehalose and noticed a change in balance within a month, but not until I added niagen did I find that I could exercise and recover strength afterwards. In addition, my father and my aunt who had been in a wheel chair were both able to return to taking a few steps without the aid of a wheel chair. My disease is genetic and my father and my aunt both have SCA1 like me. SCA1 is caused by a bad protein in the brain and now scientists are beginning to believe that the one common cause in all Parkinson's is a bad protein in the brain, not the clumps they find, but the "mis-folding" of the protein BEFORE it clumps. (That theory is critical as to why I believe my therapy is relevant to PD.) In any case, my father remained stable with no progression for over a year until we put him in a nursing home where they refused to give him trehalose and niagen without a doctor's note. Tragically my father also suffers from alzheimer's and there is evidence that trehalose and niagen were probably neuroprotective for that illness as well. This past month which is 5 months after my father stopped taking trehalose and niagen he no longer recognizes me. On the other hand, my aunt remains stable at home almost 18 months after starting trehalose and niagen. She is taking nothing else but does do physical therapy twice a week. She is 76 and I am not aware of any clinical case of a person with SCA1 at her age not progressing rapidly worse to 100% reliance on a wheelchair and continually increased slurring of speech. (She is taking 3 to 4 Tbs of trehalose and 1000 mg of niagen - I do not recommend that much trehalose because it has been shown to cause weight gain, but at 76 my aunt feels it's worth it.)

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After my initial success with just trehalose and niagen, I increased my research and learned about the theory of attacking neurological diseases from as many angles as possible and that is why I added diet and exercise changes plus thiamine, magnesium, Tuarine, EGCG, and pterostilbene to my "therapy" in the belief that each plays a different but important role in overall cellular health.

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Bottom line: Yes, I saw enormous improvement from just taking trehalose and niagen, and I shared that information with folks around the world and I have found about half or more of the people that have tried just those 2 supplements reported improvement. Those folks included people with ataxia, Parkinson's, and Huntington's. Sadly, that and a $5 bill will get you a cup of coffee at Starbucks and not much else. Until some generous foundation offers serious money to study "supplements", we, the patients, have to rely on what little science exists and the reports we share.

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Joe

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P.S. Trehalose is essentially identical to mannitol in how it acts in the brain and obviously mannitol is getting a lot of attention in the world of Parkinson's. I consider trehalose and mannitol to be essentially identical in terms of potential benefit and think it's just a matter of which your body tolerates better as to whether you take one or the other. Mannitol might be slightly preferable since it has fewer calories although both are low calories sugar substitutes.

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Thank you. I really appreciate your sharing all that.

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Hi Joe, I am buying some trehalose. I did try Mannitol it seems like I didn't do a thing for me . I was reading that your balance improved and I am hoping for my balance to improve with trehalose so I'm going to try some. I was going to buy some niagen and then I started reading some of the feedback on Amazon. Some people mentioned high blood pressure from taking niagen, and as you remember thiamine HCL give me very high blood pressure. So now I have no idea what to do if I should get a bottle of it or if I should not. What do you think? Mary

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Hi Mary, There is no scientific evidence showing Niagen raises blood pressure in the least and there have now been hundreds of people run through clinical trials. In fact there is evidence that both Niagen and trehalose act to lower BP and improve vascular health. You even linked to one of the research reports:

healthunlocked.com/parkinso...

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ncbi.nlm.nih.gov/pmc/articl...

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With any supplement there is a strong propensity towards a placebo effect initially whether good or bad. I am not a doctor so talk to your doctor and have him/her monitor you over time, but my recommendation for all PwP is to try Niagen at the recommended dosage and a Tbs a day of trehalose or mannitol for a year and THEN make a judgement. Trying something for a month or two is truly meaningless. As I have said over and over, if these kinds of supplements actually work, they most likely will just slow progression meaning the average person will not FEEL any different, but after a year or two MAYBE they will notice they haven't gotten much worse. That would be the hope.

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Well, I guess I'm going to give it a good try I'm going to buy one bottle and see if my blood pressure stays the same thanks Mary

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I agree with you entirely that sugar is poison, I'm having a difficult time cutting it out but am doing it gradually, it's in so many processed foods which I'm cutting out also. Want to try the Ketogenic diet pretty soon. Suffering Socks

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I've been on keto diet for nearly 5 months having cut sugar out of my diet 12 months before. In all I've lost about 50lbs and seen my blood pressure drop significantly. First two weeks of keto diet were tough but then noticed muscles begin to relax (legs, arms, shoulder, neck, back) so persevered. Suffered from palpitations and anxiety for a few weeks but this was resolved by dropping amount of Sinimet and taking a small amount of Diazepam (boosts GABA which needs to balance Dopamine). Am now on about 1/3rd of Sinimet I had been prescribed and not sure if it is having any real benefit. Keto diet requires some dietary adjustments but is not that difficult.

PD researchers are trialling drugs (like Exenatide) which are used to treat T2 diabetes so it seems to make sense to go with diets that restrict carbs. My wife was diagnosed with T2 about 10 years ago and started the keto diet with me - she is now classed as "pre-diabetic".

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2bats, thank you for sharing. I would be interested to know more about your journey to becoming free of the Anti-Parkinson medication. May I ask if you have a facebook page or twitter account where it may be possible to follow your progress?

Best wishes,

Paul

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Hi Paul, I do have facebook for family and friends but I don’t put anything health related on there - just here! I’m now 6 days off the Ropinirole and the Sinemet and while I feel pretty good still, I’m clearly out of their influence now as my right arm tremor is really noticeable. On the plus side, my back is so much less painful, the mild exzema continues to improve and my muscles feel much more ‘soft’ and relaxed. I do feel pretty weary and as the amazon B1, B5 and B12 have arrived and the B3 and D are due in a couple of days I hope that the supplements will restore my energy. I did an hour’s serious Pilates at 10.00 and 90 minutes of gentle Racketball at 12.00, which was interesting as it is taking me 15 minutes to persuade my left arm which doesn’t have the tremor, to play smoothly, whereas my right arm which does, was pretty cooperative! This may also be connected to the fact that my ketostix say I’m only barely in ketosis and I’m eating NO carbs, not much protein and LOTS of fat. The real question is whether on the Keto Diet my tremor will improve or not. Mentally I feel sharp, I’m sleeping well - 1am to 6am! Just trying to get back into ketosis;)

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Further question for you all - has anyone tried cannabis? I read that it is conveniently fat-soluble so should go well with the Keto Diet :)))

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How to make diseases disappear | Rangan Chatterjee | TEDxLiverpool

What Rangan says is that everyone has different causes to their illnesses.

The best diet for humans

The video above with Eran Segal takes that further to demonstrate that different diets affect people in different ways, so that what may be good for one person would be bad for another due to the genetics of the individual and the genetics of their microbiome.

He shows a graph with two very different responses.

The red spikes in blood sugar are the result of the ‘wrong’ diet and the blue the result of the ‘good’ diet - but these could easily be the opposite way round for different individuals.

With the amount I used to eat it is surprising that I didn’t become obese and get T2 diabetes - but instead I got Parkinson’s Disease which is a trickier option to deal with but is surely linked to diet.

Best regards, Phil

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So - I’ve been on the Keto Diet for 4 weeks now and am enjoying it, now I’ve worked out things that I like that comply with carb avoidance. I’ve also now been off the Ropinirole and Sinemet for 8 days and that’s a bit more of a challenge. I hope that there is no trace of the 2 drugs in my system as the DAWS (Dopamine Agonist Withdrawal Syndrome) is pretty tough - strong right hand tremor, feeling jittery and being pretty tired and certainly having trouble moving quickly - so I have some anxiety as to whether these symptoms will worsen if there is more to come, so to speak! I went for a 15km bike ride and picked up some Movicol to replace the Fybogel I’ve been using having just noticed that it contained Aspartame, to my astonishment. On the plus side, I then played Racketball for 90 minutes, which was interesting as I now find that every time I play I have to re-train my left arm to hit the ball smoothly without twitching but the right arm which has the tremor is fairly good from the outset. My main difficulty on court is trying to motivate myself to move fast enough to retrieve the ball. This is incredibly frustrating as I used to be extremely fast around a Squash court and now I’m being outclassed by very ordinary players (Oh the humiliation!;-(). Nevertheless, the process of playing with both arms improves both my physical and mental fitness immensely.

In the search for clues as to the origin - and treatment - of my Parkinson’s Disease I would be very interested to know if any other PD sufferers have had the following features in their personal history:

* An ability to eat enormous amounts while remaining slim

* Alopecia

* Severe perspiration when exercising

* Reynaud’s syndrome

* Total inability to play a dropshot in their chosen sport

* Dreadful handwriting with a biro, much improved by using an italic fountain pen

* Shoulder problems eg Rotator Cuff and torn long biceps and supraspinatus

I’d also love to hear how others have got on with Keto Diet and with coming off Ropinirole and Sinemet

I look forward to hearing from you. Best regards, Phil

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* Attrial Fibrillation brought on by heavy caffeine consumption!

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* Major surgery - eg road accident

* Constant need to clear throat due to mucus buildup

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Hi 2 bats. I too really like your outlook on life, and that you spend UK winters in NZ! I can recommend the NZ summers and lifestyle for anyone, particularly with PD, as it is relaxed and easy-going. And I too feel I had 'pre PD' for many years, even during teenage years, but no doctor is interested in going back that far. I've now officially diagnosed for 3 years and been on Sinemet for a couple of years, and can slowly feel myself reducing in physical capacity. I've always been uncontrollably sugar-addicted. So your recommendation about the Keto diet came as a symphony orchestra to my ears, especially as my diabetic daughter has been recommending it for a while. I've downloaded Colin Potter's material (thank you Colin) and we're away, me more seriously than my husband, but he's also enjoying it. Thank you - for your post, and your take on things, great - please keep possting.

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Update on the KETO DIET and NO MEDS:

1 month in and I’m finally in ketosis to about 6mmol/L - and I finally have some energy - my right arm tremor is finally improving after getting worse since 4th July when I took my last dose of Ropinirole and Sinemet. Looks like the light at the end of the tunnel is not an oncoming train!!!

I am able to monitor changes to my strength by using STRAVA which is a cycling/running app. Several times a week I cycle the 5 miles/ 8km to the squash club and back, which involves a climb up a 6% hill. My changing times for the hill clearly showed a reduction in ability after starting Keto, but yesterday I found my time had at last improved - not to the full pre-Keto level, but noticeably, tallying with my ability to stay in the middle gear on the front chainring for the first time without having to drop to the lowest ratio due to fatigue. This was after a session where it took a little less time to ‘re-educate’ my left arm to play smoothly and after 30 minutes I quite suddenly began to time the Racketball strokes properly for the first time since I dropped the Ropinirole and the Sinemet. I also felt that I was moving better on court. I think the medication is finally out of my system after 12 days! It was horrible in the DAWS phase, but I’m pretty confident that the symptoms are improving gradually.

I’m seeing my Neurologist and the PD Nurse for my annual check-up on the 19th July - that’s going to be an interesting conversation as all that usually happens is that they strongly recommend upping the dosage... I have a mind to keep my Keto Diet and drug elimination a dark secret initially;-)). I think I’ll start by asking what they think about hypothetically going on a Keto Diet and giving up the meds!

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Good approach- how’d it go?

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Hey 2bats, Great to hear about such success! Thanks. I LOVE the idea of getting rid of “medications”. Drugs! But, I question whether or not it is necessary to go as extreme is Keto. I agree sugar is BAD! But it has been my understanding that fruits (natural unprocessed sugars) are Good? Since reading your posting a week ago I have stopped all forms of processed sugar. (Not easy as I was addicted to Mt. Dew Kick, energy drinks), usually around 4 or 5 per day. And I switched from ice cream to plain yogurt with my own added fruit for my midnight snack.

And from my research, there is a difference between simple and complex carbs, the general opinion is that simple carbs, White rice, white flour etc., bad... Brown rice, whole wheat flour etc. complex carbs, good.

I feel like I would be missing some good nutrition by being so restrictive with my fruits. AND breads and cereals, I like to bake bread. (100% stone ground whole wheat bread). VERY difficult to give up!

I HOPE the main necessary thing we get from your experience is Sugar is BAD! So if we cut out ALL processed sugars, (and simple carbs) we live? :+)

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So - a couple of updates as to my progress:

Update on 19.07.2018

Cycled to the racketball club and back and achieved a slight improvement in time to climb the 60m hill. Took videos showing the quadriceps stretch that I do to de-tension my back muscles, much easier to do now the muscles are not super tense. Also videos of my progress in an hour from almost unable to time hitting the ball with either arm to moderately competent albeit still slow round the court. I’d say this was the equivalent of John Pepper’s “fast walking”. Then off to see the neurologist who commented that my tremor was ‘cosmetic’ and that it was more relevant that I was ‘slow’. It is true, but I had become slow in the year since I saw him - that and the excruciating back pain were why I decided to go on the Keto Diet and gradually come off the meds in the first place! I apparently did that at the right rate and he confirmed that I will have cleared both the Ropinirole and the Sinemet from my system by now. He kindly agreed to set me up with a good range of blood tests (including PSA I’m happy to say) and we parted amicably for another year. I’m of course hoping that I will have made some more progress on getting my life back in the next 12 months:)

I’m looking forward to seeing the excellent Parkinson’s Disease Nurse in November before we fly south to Australia and New Zealand for the Winter.

If anyone out there has any thoughts on methods to minimise the tremor I’m all ears!

Got to stop now as I’m due back at the club for another Racketball game - it’s all go...

Update on 27.07.2018

Yesterday I cycled 8km to the club played Racketball for an hour went out for Keto Diet lunch of salmon and then cycled 8km home in reasonable time bearing in mind it was 34degC! Got home, caught up on more Keto research - Dom D’agostino videos - and then went back to the club for another 45 minutes of Racketball just to see if I could! And I could - although with the heat I did feel pretty bushed:). I did get offered a third game an hour later, but had the senses to decline.

I played another hour today - without the bike ride - and felt pretty good. I should explain that I’m now taking B1, B3, B5, B12, C, Magnesium, D3, EPO, E, C8 MCT and I’ve just started taking Copaiba Oil which is rumoured to be good for the tremor. By one of those weird coincidences one of my Racketball mates happens to be in the pharmaceutical industry and his area of expertise is Parkinson’s Disease and dopamine. He actually reckoned I had Parkinson’s Disease a couple of years before my diagnosis. He was I think quite surprised that I am functioning so well after almost a month of ZERO MEDS, so I’m pretty confident that the Keto Diet is the main reason for being in good shape apart from the tremor. I still have some back pain when I wake - it starts as something like cramp in the muscles round the left hip and then migrates to the right lumbar region. I’ve taken to wearing knee pads when I’m playing Racketball so that I can quickly ‘take a knee’ to stretch the quadriceps in between rallies to get the back pain to back off, I would love to try some proper CBD/THC as I feel pretty sure it would help enormously - but with the current regime that may be a few months away. I’m considering being a health-tourist in Amsterdam so that I would at least know whether it does work!

I’d love to hear your feedback, Best regards, Phil 2bats

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Update 29.07.2018

Did a 42km ride yesterday and felt totally exhausted, so much so that I almost quit, but I made it home and the slow time for the final Hedgerley Lane hill turned out to be slightly better than my slowest time on the first climb after starting the Keto Diet. I felt pretty wrecked this morning but gradually improved and played a 40 minute solo practice racketball to a reasonable standard. I was concerned that i had overdone the exhaustion on the bike and with Ketones at about 8mmol/L I felt that the stress of the ‘Keto Flu’ might trigger either a collapse or more optimistically a breakthrough!

Decided to record weight - 69.5kg, waist - 84cm, right thigh 48cm, left thigh 46cm, R biceps 33cm, L biceps 32, R forearm 28, L forearm 27. My weight prior to all this was 72kg, so I’ve stabilised at a 2.5kg loss of weight. Getting fed up with being told I need to gain weight by people who are obese! I’m smack in the middle of the green Body Mass Index...

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Update 04.08.2018

Still on the Keto Diet - still have no strength and no energy. Also reliant on laxatives to function... Tremor is irritating but manageable although typing is tedious. Fell off my bike today, fortunately at low speed but I’ll be sporting some impressive scabs on my face for a fortnight I think. Taking all the vitamins recommended, but would appreciate suggestions for regaining strength on Keto diet please!

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Hi 2bats

Thanks very much for your regular updates on your experience with the Ketogenic diet.

Did you have your electrolytes check? In particular the Potassium? Sometimes the low energy might be related to the electrolytes imbalance.

I am a supporter of Keto diet and know how beneficial is.

Kia

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Thanks for the suggestion Kia, I’ll investigate and report...

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Hi 2Bats - Congratulations on fighting so hard. That, I think is key.

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I do have two suggestions for you to consider. First, there is strong evidence that the reason a keto diet is helpful is simply because it increases the production of NAD+ in the body. NAD+ is necessary for every cellular function in your body and the amount of NAD+ your body produces declines drastically with age and with disease. Here is a study that investigated the possible reasons why a keto diet is helpful for neuro protection:

ncbi.nlm.nih.gov/pmc/articl...

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Second, there is an enormous amount of research on exercise and PD, and clearly any exercise is better than no exercise, BUT there is only one study to date that tried to look at exercise in a truly "double blind" type study and that one report said that running on a treadmill 4 times a week for 30 minutes at 80% max heart rate STOPPED THE PROGRESSION OF PD,

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jamanetwork.com/journals/ja...

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journals.plos.org/plosone/a...

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and what to me is even more amazing is that a second study examined bad alpha-synuclein build up in mice and found that mice that ran had less build up in their brains. If you read my post you will see that I am a believer in the theory that alpha-synuclein is the one common "bad boy" in most PD cases. So here you have two studies. One shows it stopped PD progression and the other helps explain why.

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What does all this mean?

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Niagen boosts NAD+ dramatically and running on a treadmill may halt progression so instead of eating a keto diet and biking why not try taking Niagen and running. What have you got to lose from trying?

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Joe in NY

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PS If you click on a person's name or avatar you see all their posts and replies.

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Hi Sunvox

What Niagen brand have you been taking?

Kia

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Hi Kia, Any brand is fine so long as the bottle says - licensed by Chromadex. That is the only way to be sure you are getting NR and not NAM. Unfortunately it is not cheap.

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Many thanks Joe

Kia

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Tru Niagen is the Chromadex brand, but there are others licensed by Chromadex, as Joe indicated...

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Many thanks Jim

Kia

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