The more I read, the more I’m convinced that my PD was caused by my diet. Watching a video of JJ Virgin on what not to eat - specifically apple juice - I was reminded that about 30 or 40 years ago I gave up milk and substituted apple juice in everything, mistakenly thinking it was healthy - duh! So for around 3 or 4 decades I subjected my body to a daily diet which included a huge quota of fructose. I had apple juice in multiple cups of tea, with cereal, and by the glass. And although I ate like a carnivorous horse, being constantly hungry - I never put on weight or got type2 diabetes, possibly due to very high exercise levels. BUT I did get Parkinson’s Disease... Did anyone else make that sort of dietary error?
Overdosing on fructose, could that ha... - Parkinson's Movement
Ever used household "flea bombs"?
I agree I never really thought I had an unhealthy diet, never had diabetes, was naturally slim. I now realize it maybe wasn’t awful but it was not nearly as healthy as the diets people on here suggest and I am trying to implement. I do think sugar (just my opinion) is probably the worse things we can have if you have PD. I wonder too since I was never a big fan of candy but often enjoyed a nice glass of lemonade or my biggest weakness pop. I wasn’t drinking it all the time but it was always in my fridge. I always remember my dad saying one day when I was probably in my 30’s “that stuff will kill you”. Not sure it will kill you but yes I think over doing sugar could possibly lead to PD. Darn Dr. Pepper (my favorite), I read somewhere that PD is considered by some as type 3 diabetes of the brain. I think that’s why fasting helps and why there are trials for diabetes drugs that could help. I also read that when people have belly band surgery for obesity as a positive side effect their type 2 diabetes is cured. Why? Because it is a forced fast. Just food for thought (or sugar in this case!)😊
Steve jobs apparently went for weeks eating only apples, which didn't work out for him.
I think you are right though about a diabetes type relationship- that exanatide diabetes drug worked for PD in trials.
Someone on this site is trying it - I hope they post the results.
I was an apple and peaches killer - 4 a day. Add the pesticides in top of the fructose.
It could have contributed, but not the only cause of your PD. Who knows and who can tell for sure why people get PD.
I did construction work in a refinery for many years, heavy drugs for many years, sweet tooth although never candy but lots of cakes and ice cream. And I've been a vegetarian for over 20 years some fish on and off. So I agree lots of contributors but whose to say what exactly.
I agree there are probably countless reasons for PD just as there are for cancer. My sister is a nurse, 8 yrs older than me, very thin loves candy, big sweet tooth, does not have PD. Someone on HU once said someday PD May be treated more like cancer in the sense that there may be different kinds just as there are so many different symptoms. She said that she thinks finding a cure is difficult because during these trials all Pd people are put together. She participated in a trial and had wonderful results but in talking to other participants they weren’t having the same results so the whole thing eventually was considered unsuccessful sadly. But maybe she and a few others had a particular type and it was a cure for that kind of PD but because there were more people with other types in the trial that it wasn’t and never would be successful for the whole trial was considered a failure. It made sense to me.
I truly don’t know why I have PD I wonder about different theories sometimes because if you knew the cause maybe someday it would be easier to find a solution . I also think stress and overthinking things isn’t good that’s why I’m going to stop thinking and sleep!😉
Dear Connie, you are so right. It's not "one size fits all" unfortunately. Therapy that works for one person, might not work for another. Individual efforts is the best approach to PD. Trial and error therapies.
I wonder how many people on trials are having the odd other supplement at the same time and others aren’t. Maybe a vitamin tab, an iron tab, fish oil tablet etc which could interfere with the results. How to get every one eating exactly the same and exercising the same so it is a fair trial though. Impossible.
Connie do you mind me asking how long you've had PD? You look very young. I think stress and overthinking does do damage - it affects my anxiety and depression - I don't cope very well with my hubby's PD as he can be difficult at times. Suffering Socks
So sorry I somehow missed this, I’ve had PD symptoms much longer than my diagnosis. Long story short symptoms started about 7 years ago but initially I was incorrectly diagnosed with dopamine responsive dystonia. Sinemet is the treatment for that diagnosis as well, I’ve been on medications for about 4 1/2 years. My picture was taken about 5 months ago and personally I think I look my age (52) but people do say I look younger from time to time but I don’t think I do. A couple weeks ago someone thought I was my oldest daughters sister lol, my daughter didn’t seem too happy about it! But in truth I’d rather wrinkles over PD any day!!😊
Thanks for that Connie - my hubby had symptoms of PD years ago but only diagnosed this year. He's turned 79 and gets terribly tired most of the time even when he does very little. Had a B.C.C. cut off his face recently and it took a long time as his anxiety took over and his whole body shook, had to take to his bed for several days.
I pray he’s doing better now!🙏🏻🌸
Yes Connie he's a lot better now, his anxiety got much worse after his heart ops., he gets upset more easily now and I find I need to be much more patient with him. Suffering Socks
The gods laugh in their sleeves, whom to watch, whom to believe.
Correlation is easy and comes so natural.
Causality is another matter
I think I watched too much Popeye the Sailor. Yeah! That's it!
Thank you cincinnato, I’ll check as you have suggested. Ciao, Phil
Thank you Cincinnato! I do take b1 hcl and have been in contact with Dr C., he has advised me and has said PD with on/off periods and dyskinesia is more difficult to treat . I’m still trying it but it has been quite challenging to find the right dose. Too much and my dyskinesia becomes very bad. I am taking much lower than most and still haven’t figured it out but haven’t abandoned it yet. I would love to hear from others who take b1 and how it affects your dyskinesia.
Erniediaz1018 is one of the latest to start B-1 and reported that it is helpful for his dyskinesia, among other things:
One drawback though is he is also starting MP at almost the same time making it hard to discern which is doing what.
I will contact him again thank you!! Unfortunately dyskinesia started very quickly after I began cd/ld. I know of others on HU that developed dyskinesia early on as well. I feel like I am very sensitive to drugs/supplements etc. . Initially I felt it was helping but then hit a wall. My dyskinesia was terrible and I was so very stiff during my off times it was hard to function. I was either so dyskinetic and dizzy or so stiff I could hardly walk. I knew it wasn’t sudden disease progression as B1 was my only change. Possibly due to being smaller in size the megadose of B1 was more than my body could handle. Knowing the success others have had, friends like Gio and Kia I decided to not give up but kept lowering my dose to see if I could find the right one for me. I’m doing better but still room for improvement.😊
Thanks Art I will have to reach out and see how things are going for Erniediaz1018. I have often thought of switching to mucuna and tried some NOW caplets but maybe should give it another try . I’ve been wanting to ask you Art what is the smallest dose of B1 that you have seen someone have success with?? Thank you for any info Art!
That is a good question and I am not positive, but I think it was 500 mg once a day with an occasional second 500 mg dose at lunch. There hasn't been a lot of testing below 500 mg yet, but I suspect there will be more of that as people continue to test thiamine in increasing numbers. On this forum we only see a small snapshot of the people who are taking B-1, but if this forum is using it to the extent that it is, I have to believe that other forums are using it also.
When you read what dose people find effective for their PD symptoms, you can clearly see that dosing is all over the map. People seem to have varying degrees of sensitivity to B-1 with some being highly sensitive and able to get by on relatively low doses while some need up to 6 grams to achieve benefit. This is why the "Who is Taking Thiamine" thread can be quite useful for people either considering B-1 or currently taking B-1.
Yes, we hear reports from Viterbo, but there is nothing quite like seeing results in real time!
What I like and we don't really talk about it much on this forum, is that if B-1 really does stall disease progression as it appears to, as long as you are on it, is that this could potentially by you time in terms of waiting for an actual cure or better treatment and that right there would be worth more than the price of admission!
Thank you Art your thread is so popular I need a few hrs to go through it all!!😊
that is true Art!
In my research sugar and Gluten are the worst. Otherwise moderation.
I think PD is due to lysosomal storage dysregulation/disease, or at least one form of PD
Interesting theory. I do remember a time - possibly for 10 years or so in the 1970's- during which I drank apple juice, but not to the extent you describe. I was 'adicted' to diet Pepsi for about 3 decades between 1990 and 2013. What did I drink before that? I don't really remember, but Maybe high-fructose Pepsi?
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