I haven't been back in the forum for quite a while, but just in case it may be of any interest to anyone here's an update on my situation:
Background: I was DX in mid 2011. I'm now 5 years later and 50 years old. After DX I spent a couple of years trying to find out the cause (and possible treatment ideas) of my PD. I'm a normal person (not medically trained). I didn't find any breakthroughs nor anything anything scientifically proven, but I came across a few things I found they seemed worthwhile enough for me to try. Here's a quick summary:
1. I believe PD is linked to a cortisol de-regulation of some kind. So everything that helps cortisol "stabilise" will help my PD. Unfortunately, there are no clear ways to do this, other than general "life hygiene" ones (get outdoors fresh air and sunshine, exercise, eat healthily - plenty of vegetables and few sugars, avoid TV/computer screens 2 hours before going to sleep, keep cool and avoid stress,...). I have been trying to do better at this, although I still have a long way to go on exercise, spending time outdoors, and eating healthily.
2. I believe PD involves some form of brain inflammation which cortisol de-regulation makes us more prone dto have. I don't know what can prevent this, but the best thing I found so far is Kutki. This is supposed to contain Picrorhiza kurroa which itself contains a chemical ingredient (called apocynin) that is supposed to help with brain inflammation. I am of course not fully sure of all of this, not of the desirable quantities involved, but have been taking around 900 mg of Kutki per day for the past 3 or 4 years in the hope it helps.
3. There's a number of other meds that have been claimed to help (though, none with clear scientific evidence behind them - so, pls don't just start taking this blindly). I've been using some of them. I've personally been taking: (i) 1000 mg of vit C per day (ii) 400 mg of CoQ10 per day (iii) 400 IU of vit E per day (iv) 500 mg of Magnesium Dioxide per day, (v) 1 mg of Azilect per day, and (vi) 125 mcg of Iode (kelp) around 3 or 4 days a week. I also sometimes take Vit D (sparingly). I take all of this under the knowledge/supervision of a general practicion or my neurologist - pls do the same.
I'm not sure all this stuff has helped or not (don't know what would have happened if I hadn't taken them). All I can say is that 5 years down the road:
- My shaking is still limited to my left harm and hand and hasn't progressed much. I use an app on my cell phone to measure the intensity of it from time to time and it hasn't increase (it has even decreased a bit ... but maybe that's just because I got used to measure it)
- I do feel my muscles have became a lot stiffer - I do use my left hand a lot less for eating, typing on a keyboard, etc. My left foot also gives me some trouble. This is the part of PD that has progressed the most in my case.
- Overall I feel positive about life and am not going to let PD get to me.
- I continue to work and lead my life almost as normal as before. I do tell people around me that I have PD and occasionally they make remarks that they see me shaking... and I just got a new car and chose an automatic gear one... but overall, I don't feel I can't do stuff because of my PD.
- The only other negative I feel is lack of physical fitness. I'm not currently doing much exercise and am 50, but somehow feel that my muscles melt down - and I feel that some of that is perhaps due to the meds I'm taking.