I use diet not as a cure but as a tool to ease my PD symptoms.
I have gone from rock bottom to 'not so bad at all thanks' and it is mostly down to diet changes to remove foods that aggravate my PD symptoms. I have documented everything for you in the link below. It is my experience, to you, for free - no books to buy, no affiliate links, I am neither a guru in search of cult followers nor an agent for a Bill Gates vegetable farm (or so you think!), I just hope it helps someone. If it isn't for you, then that's fine.
I have tried to be complete and avoid questions as I am rubbish at answering them. I didn't post the video of me taking an eternity to shuffle 2 feet along the carpet last year because I was only in my undies and I value your long term mental health.
I wonder why health professionals are not more forceful about diet.
Apart from the interesting content, your attachment is quite entertaining with your humorous writing style! What's particularly remarkable is that you focused solely on your dietary habits, without introducing any other lifestyle improvements such as exercise and supplements. You mentioned the placebo effect yourself, which certainly plays a role, but I believe that the enthusiasm about the positive changes also has an amplifying effect. You've hit upon something relatable, having something to work on can work wonders. Very recognisable…Thank you for sharing, and good luck with the continuation!
Hi and thank you Esperanto 🙂 I have done zero exercise since December 2022 and all I take is B12. I have a massive bag full of useless supplements I have tried. I was more or less quadraplegic at the time so there was nothing to focus on other than what I consumed.
The supplement I was taking alongside B12 at the time of my cheese toastie moment was black coriander. I had high hopes that 'this would be the one'. (Again.) I thought the diet change was pie in the sky and I only tried it because I had run out of ideas. I was a vegatarian and not a vegan by choice at the time, and that choice was that I loved cheese and latte coffee. Just my luck.
You are right about the amplifying effect. I am off out to football to pass the good vibes onto my team. Have a nice weekend 🙂
While the current popular opinion advocates for a holistic approach to managing PD symptoms, which involves overhauling your entire lifestyle and reducing medication, it is courageous to focus solely on the aspect of nutrition. It provides us with a wealth of information.
By attempting to tackle everything at once, like you run the risk of taking on too much and approaching things half-heartedly, resulting in less progress in neurogenesis than is actually achievable. I myself also belong to that group of inconsistent individuals.
Your goal is clearly not to immediately reduce your medication, which is a pitfall for many of us, but to utilize it to improve your situation. You have probably already implemented stress avoidance (?) and I am very curious about the potential impact of incorporating exercises. 🍀
I never thought of it that way but I agree, focusing on one thing has been useful. I didn't have much choice though at the time 😀 I think the time has come for me to add something else into the mix now, and it will mostly likely be walking, maybe even fast.
just to note.,..Actually is proven fact that for majority of people is easier to start regularly exercise than make some radical change in eating habits...
Exercise is absolutely necessary, but before anything else or at the same time, you must address serious underlying issues. This primarily appears here to be related to diet, but it could also involve medication, nutrient deficiencies/toxicity, chronic stress, or polluted sources.
If you follow the elimination method, as AGH_1966 did, exercise can greatly mislead you when it comes to your symptoms. In my case, I had a severe B6 deficiency. No matter how much you train, if I hadn't discovered and tackled that issue first, I would unquestionably be confined to a wheelchair right now.
I think focusing only one change at a time (diet, exercise, meds, supplement) is very important. The key to change for you was B6, for me it was food so yes, I agree we should visit them all. (I had tried B6 btw.)
By way of a note in return I guess it depends how ar5ed you are about feeling better and that might increase depending on how bad your symptoms are because when I could barely speak or move exercising was beyond impossible and changing my diet was a easy peasy, actually. The change was phenomenal - that too is a fact. Hope that helps...
A very interesting read, and humorous. What do you do about the low protein intake? Hubby and I have gone plant based/ vegan before but found the protein intake was not even half of what it’s supposed to be. If you don’t get enough protein your body will take it from your muscles, so muscle wastage can become an issue, you need strong muscles to help prevent falls and for a normal insulin response etc. This is often why we revert back to a semi vegan diet, e.g ‘flexitarian’ !
Hi PEB, and thank you. I don't do anything about low protein intake. What is in my diet list is fine, at least for now. I eat various beans too - I need to add them in. I was at Forest Green Rovers FC on Friday and they are a vegan football club. (The fact they are crud is because they are paying the price for losing a good mananger, not because they are vegan.) PDPatient below looks like he has some info though.
P.S. I did find that too much protein (at any time) was affecting the efficacy of my meds.
Well ... there were Forest Green supporters from South Korea, Japan and New York New York (i.e. Not Rotherham) there on Friday, but I am a Stockport County fan.
Good read thanks. Perhaps one of the differences is that you now seem to take an interest in food again after a period of eating processed food and ping meals? Perhaps the key is cooking and eating home prepared food with good variety and quality ingredients? I think we can all learn something from your experience, but for me, I would struggle with weight loss if I cut out too much protein. My experience over the past 6 years or so is low carb, and that approach has so far been good, but you need an iron will at times, to miss out on cakes, chocolate, rice and potatoes.
Whatever suits. If it works for you I love it! 😀 I was cooking for myself prior to covid but with plenty of eggs and cheese and milk. I can smell the caremalised onions that were part of my great big daily cheese & onion omelette berakfast right now. The iron will thing you mentioned - yep!
For a chunk of 2023 just walking would have been nice. There was no chance of fast walking - you should see the video of me in my undies navigating 2ft of flat carpet. There is without doubt something to be gained for each of us discovering which elements of our diet (if any) exacerbate our PD symptoms, whatever that diet may consist of and, if able to exercise, doing so. It is time for exercise for me again and I will be walking, maybe even fast. 🙂
P.S. Have you ever tried stopping walking, just to see if your PD returns?
Blimey!!!! 89!!!! Fair play to you John . I was going to ask if the PD came back at all but forget that, don't answer, the message clearly is to exercise - and if someone is 89, having fights* 😜, patching themselves up and getting back out exercising I should stop questioning and start learning.
Really interesting and your approach to diet, listening to your body and finding what helps and what doesn’t, a definite result for you! Enjoyed reading about your journey!
We focus much more on keeping to a healthy diet but not quite as strict as yours. Finding foods that help or don’t, is a work in progress.
Keeping meds much lower than yours though, gradually cut down now due to intolerable and debilitating dyskenesia after 9 years of PD meds!
I agree, it is a never ending work in progress. I fannied about cutting things out of my diet. Getting to this point has been tiresome. I didn't cut processed food (e.g. Pretend meats) or sugary food out at the start. I would respect the one hour before and after window but ate plenty. It took a few months to work out that they weren't helping me either. (I can be a bit slow, especially when I don't want something to be true.)
I will update my blog if & when something fabulous happens and also if I discover it was all a dream/I was horribly wrong. 🙂 I don't think there is enough of the latter.
Thanknyou and I appreciate the information you shared, and I wholeheartedly agree that diet plays a crucial role in our overall health, yet doesn't receive the attention it deserves from medical professionals.
I changed to almost vegan, eating fish for the omega 3, and occasionally chicken and so far I've only reduced my sugar intake.
I definitely think this has improved my symptoms.
To explore more delicious and healthful vegan recipes, various websites and YouTube channels are available. Here are three I like are:
I am 10+ years into my PD journey and still doing quite well now, although 5 years ago I was barely functioning(see my profile for more details.) I had huge success with high dose B1 but I also went plant-based at the same time.
I truly believe the plant-based diet and exercise is allowing me to live a somewhat normal life. I only take a small amount of C/L - 1 tab daily in split doses with mucuna. I exercise daily- walk, hike, gym, yoga - and have a huge vegetable garden.
I did the ZOE thing and am awaiting my results. I also did a hair analysis and Dr. Marc Hyman’s Function Health testing ($500 for a complete evaluation) and my biological age is 50.3 even though I’m 66!
Not sure how helpful the ZOE results will be. I did a gut analysis several years ago and the results were of no value. Even my neurologist couldn’t make sense of them. But ZOE sounds different so we’ll see.
this is amazing info on diet!!! I’m doing it all but I didn’t know I could take cl every three hours! Can’t wait to try it as I am down to one hour of ON time between dosages of 2 cl 25/100 plus Entacapone
No option for a PD nurse. Sounds like a great idea! I felt better on the diet and lost 60 pounds which helped a lot..got off meds for blood pressure and reflux. Everyone says I look great🤣 But sadly cl just isn’t working long enough.
Impressive! So glad to hear that you are doing so much better. Your new way of eating lines up with a whole-food plant diet, one that the nutrition research is showing is generally the healthiest way to go. And like your results are showing, protein from legumes and whole grains are sufficient for health AND very compatible with levadopa/carbidopa working well.
It is a hard change to make. Most cannot fathom it - and simply do not want to give up so many familiar delicious foods especially because changing diet affects other family members too. It usually takes something big - like PD going poorly. I don’t have PD but I was only able to make the change because nine years ago I was in a lot of pain and quite weak (the rheumatologist's best guess was Lupus) so I was finally willing to commit to this way of eating I had been learning about - and my symptoms cleared up 😅. Luckily when my husband’s PD came along several years later he was well on the way to eating a plant diet since I do the cooking and he was willing to make the final changes he had been holding out on - and dropped cheese (for the most part) and was able to make other changes too (dropping alcohol, for instance). We also take B12, and add D3 and algae based Omega 3s.
Looking at your lists, peanut butter is a pretty regular food for my husband, so I’ll suggest he try dropping it and see if that helps.
Thank you for taking the time to put together such a detailed summary - we’ll be taking a closer look. So glad to hear of your success, and that you are now well enough to turn your thoughts toward exercise.
Thank you Ashti. 😁 That is a great story about your symptoms clearing up - would I have made the change without something big happening? No. How long did it take for you to notice a clear improvement?
Brilliant! I have found also that diet strongly affects my symptoms. I too upped my dose a while back to almost equal to yours. But diet affects it all. Particularly dairy, cheese, eggs, milk and cream. Protein massively reduces effectiveness of the meds. The foods I eat parallel closely with your piece. I wasn’t aware of peanut butter but now I will check this out. Thanks for taking the time to write such a comprehensive piece.
🙂 Hi diet twin! It is lovely to know I am not alone in being extra extra fussy. It does make me wonder why the medical community don't mention this to us more - or at all in the case of my ex Neuroloigist 😱
I have wondered the exact same thing. The neurologist’s want evidenced based medication to subscribe but the ones that I have dealt with never talk about lifestyle and diet. Possibly they haven’t dealt with enough Parkinson’s patients to feel confident when we tell them diet is a huge part of the well being equation. Protein most definitely interferes with the meds. Dairy does not work in my body with this disease and maybe this is not the same for all with PD but can’t the neurologist say work out a diet that makes us, the patients, feel better. Perhaps this is a trial and error process but how many of us fit into our category?
I would say that enough of us fit into the no dairy category for that to be worth a go for two weeks. At the same time lower the protein - it isn't going to kill anyone. If it does then they were goosed anyway - they die so we can live!! 😂 And cut the sugary stuff at the same time. Perhaps you only offer that at a certain stage of PD. Someone who is not me* needs(?) to write a full 14 day menu for people to try as a kind of detox to see how they feel.
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