The second thing the neurologist told me after the bad news, he advised me not to go to the internet to read about Parkinson's.
I read about Parkinson's and also try different diet supplements e.g. Coconut oil, MCT oil, modified keto diet. I participate on this forum in my search to have the greatest understanding of P and to understand what, from experience of others, what my future may hold. I participate in the forum to learn from fellow Parkinson's (long) sufferers.
Online reading: a) Neurologist, stated no harm in postponing medicine; b) from Park site, it is preferable to start course of medicine as soon as one is diagnosed.
I am responsible for my own health and Parkinson's management. Therefore I read and participate in forum. I try this and that and watch how it effects my symptoms. I recently had a physical and blood tests through my Family Doctor. I asked him to help me manage my condition rather than me going to the neurologist. When I must start medication he will manage this for me. He said we will both learn.
Presently, I am in stage two Parkinson's. I find that my hope for relief sometimes makes decisions overly optimistic when it comes to diet, in particular (coconut oil).
I've been in the dark about PD since they diagnosed it in 2010. But I still think they use PD as a sweeping diagnosis when they (The Doctors) really haven't a clue what is going on. Personally I can see where my Problems stemmed from. but the Neurologist says we will not go down that road again. He might not do, but I have to go down it everyday.
In whom do we put our trust?
in reply to
Park affects everyone differently. As well the treatment. Why is that? What is different in everyone's lives besides diet?
There are lots of supplements that may work but are not being scientifically tested. In order for a drug/supplement to be used for a PD patient it must first go through 4 phases of testing and a 5th phase - follow up. This costs between 200 million to 1.2 billion dollars and who is going to test a dietary supplement for 200 million $$ to sell it at a loss for 25$ a month?
Black tea extract is good for PD. In a Singapore survey scientists correlated beverage drinking with PD and black tea, one cup a day, reduced the risks for PD by 71%.
"Alpha-lipoic acid seems to delay or reverse peripheral diabetic neuropathy through its multiple antioxidant properties. Treatment with alpha-lipoic acid increases reduced glutathione, an important endogenous antioxidant. In clinical trials, 600 mg alpha-lipoic acid has been shown to improve neuropathic deficits. "
Why is this important to PD? alpha lipoic acid passes through the blood brain barrier easily and Parkinson's is a disease of nerve damage.
"Most notably, we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually. "
Let's just say that you do take 600 mg of alpha lipoic acid daily and you should then take vitamin B1, thiamine, because, according to the University of Maryland Medical Center, large doses of alpha lipoic acid may cause a deficiency of thiamine.
Unfortunately thiamine is not that bioavailable but there are 2 options:
1) use piperine with thiamine. Piperine is the alkaloid in black pepper which gives it its pungency and also makes drugs/supplements more bioavailable. At the very minimum, piperine makes vitamins etc. at least more bio-available by 30%. Vitamin C = 50
%, Coq10 31%, Resveratrol (from grapes) 1,544% at maximum concentrations.....
2) There is a analogue of thiamine called Sulbutiamine and it has been shown to improve executive functioning and balance in PD. It crosses the blood brain barrier easily:
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