I think we are not in the right track and our approach is wrong. Treating only symptoms without looking at causes and trying to generalise that treatment to everyone is totally wrong. We are in different ages have different genetics and grew up in different environments. Having a similar disease doesn’t mean that same medication or supplement has the same affect on different individuals. Sometimes we see a user post about a supplement saying that supplement has helped with some of his/her symptoms. In just a few minutes you will see that other users start ordering the same supplement. I bet everyone of us has supplements that hasn’t been opened for years. Buying supplements become a compulsion. I think its time to stop this way and look into our needs mindfully.
Buying supplements become a compulsion? - Cure Parkinson's
Buying supplements become a compulsion?
You are right, but it's such a terrible disease that one goes for anything that gives some hope of relief. I think the only thing that is proven to some extent is exercise and diet. All other alternative therapies are not more than a placebo
Iqbal, surely, you jest.
I am a bit cautious about commenting, since I am well aware that as recently diagnosed and in a honeymoon phase, I have yet to experience the condition in the way others have. However, my take on many posts I read is that iqbal is right. It is a condition which makes people desperate, and therefore vulnerable to exploitation. And I think there are clearly people commercially benefitting from targetting us and this vulnerability. To paraphrase Mark, on his recent "Irish research" thread - our old friend MC9550 - "After 10 years with the condition, I am not interested in anything that is not deliverable within 2 years"
That may be a reasonable filter for being uninterested in new pharma research with long lead times, but it often seems to morph into " I am interested in anything suggesting promise which is available now" - regardless of whether it actually provides any benefit. The immediacy of availability is the attraction with many supplements. Activity as a substitute for achievement. "At least I'm doing something"
And maybe that provides a benefit - whether you call it placebo effect - or "taking responsibility for my health"
You’re right, but how to evaluate which supplements are good for which person? Especially as regards the hope to slow progression rather than symptom control?
Some of the supplements I take were prescribed by my functional medicine doc. Of these, some are a result of testing, others based on her assessment of my needs. Others I have added, based on HU posts and additional reading. I’m sure I take too many. But I’m not sure how to evaluate which I can drop! Progression thus far has been slow. I also exercise, eat carefully and reduce stress. Who knows what role, if any, the supplements play?
I hope they do no harm, at the least.
I do think Laurie Mischley’s research showing a positive effect for some supplements regarding progression is useful. Fish oil, CoQ10, vitamin d and glutathione.
Yes, these are the supplements she recommends for PwP, including my husband. Here is a link from Dr. Dean which really confuses me.
Hi Rebtar
I amnot against supplements as myself have been taking many since I was diagnosed. My point is to choose them consciously.
"My point is to choose them consciously."
Good reminder. When I initially learned I might have PD I started taking lots of supplements without selecting them very carefully. I just looked at what others here and elsewhere were taking, did some quick searches on those, and started taking them.
After a while, I determined to have a stronger rationale for any supplement I might take. Since I am still in a fairly early stage I have the luxury of not needing a great deal of immediate symptom relief. So, for the most part, my focus with supplements at this point is on slowing or reversing the progression. That is, I look for those supplements for which there is some decent research evidence for their being neuroprotective or neuroregenerative or their addressing alphasynuclein, etc.
I also look closely at the "risk-reward ratio." Especially the risk part.
Does that make sense?
Parkinson's causes deficiencies. Some of those deficiencies, vitamin D, vitamin B12, for example, can easily be remedied.
Easily to remedy if you are actually deficient. Not everyone will be and people can end up supplementing to no effect.
You understand my comment was about deficiency, not everyone else.
That said, you're not reading the studies and abstracts which people link to. If you are, then you must believe all of them are wrong. No?
That is one of the issues we must decide upon. Are we supplementing for a deficiency or to provide an excess which may be of benefit. That a supplement is mentioned in a scientific paper is not, of itself, a proof. It depends on the status of the paper and what research has been done.
Undoubtedly supplements have helped us immensely, like you said but oversimplifying of human body mechanism isnot a good move.
Personally, what gets me most interested in a supplement, or for that matter any treatment, is a controlled study showing the outcome of using the treatment is better than a placebo.
Occasionally I will try supplements on lesser evidence than this. In most cases there is little downside and it is not all that expensive. I can think of a lot worse compulsions
I take B1 thiamine by recommendation of Dr C . Up to now I don’t know if it help. But because it’s water soluble i’m Not worry.
During my husband's 5-day hospital stay, he was only on meds and IV. No vitamins or supplements allowed. He experienced very bad cramps as he couldn't get up and walk. I asked the doctor to give him magnesium and he said that he had to test him for magnesium deficiency. I just couldn't see my husband suffering and yelling from pain. I went home, grabbed the mag oil, went back to the hospital and sprayed him allover his body. The cramping stopped and he was able to sleep. I kept it by his bed until he was discharged. Nurses witnessed it and they were applying it on my husband, no questions asked.
At least I can attest to this mineral's positive, healing effects.
Vitamins and minerals are the basis of all cellular activity, without them you could not live,. You could say that they are contained in food in sufficient quantities, but today it is no longer the case, not even those sold on the web are all of good quality. PD by nature is a difficult disease, when you know you have already lost 60% of the cells. Medicine is not even able to make an early or objective diagnosis of PD, currently no cure. I personally use b1 as from HDT for 4 years and helped me a lot with ldopa and some vitamin and minerals occasionally, mainly magnesium . But is LDopa a supplement? And is grapefruit juice ( in trial ) just a citrus juice not recommended by Bigpharma?
I broadly disagree with this post.
How will we know which supplements work for us without trying them ourselves? Furthermore let's keep in mind that there is no definitive diagnostic test for Parkinson's. There's no telling how many of us that have received a PD diagnosis don't actually have PD. Therefore what may appear to some as compulsive supplementation may potentially Aid others in their process of trying to determine other potential causes of their symptoms. It's actually pretty similar 2 the way a lot of us were probably diagnosed with the doctor prescribing PD meds and assuming that we have PD because the meds relieved the symptoms. But some of us are trying to use our responses to the various supplements and other alternative options to hope for the possibility of a misdiagnosis or the potential for a cure sooner rather than later. Of course we have to be cautious and educate ourselves before attempting any self-imposed trials but I definitely believe trial and error with supplements is a reasonable option. We have to rely on ourselves and each other to figure this thing out because the doctors don't seem to have a clue or at least that's what they would like us to believe.
Dietary supplements in Parkinson's disease 
‘Supplementing’ supplements with whole-foods. 
My experiments with supplements
