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Originally Posted by Chris_Dancer_Engr
Thanks for the links about vigorous exercise. What Dr. Hageseth was doing looked like a lot of fun--I'll have to keep it in mind if I find I need to change things up.
I also took note of the fact that exercise may only do so much. I agree, and that's why I'm also doing a few other things based on two books I've read.
Concerning diet, I decided to follow Dr. Terry Wahls most aggressive diet Wahls Paleo Plus, that she describes in The Wahls Protocol. She's the Doctor with MS who was able to achieve major improvements through changing her diet. Most Doctors seem to recommend a heart healthy diet or a Mediterranian diet. I'd already been eating extremely healthy for most of my adult life (except I didn't go for organics) so I figured it was worth experimenting with something different. I've been on it a little over 6 months. It's easier to stick to the more I'm on it. After I had been on it a few weeks I noticed a muscle in my shoulder feel as if it was getting an electrical pulse. Nan mentioned a similar electrical feeling twice in earlier posts in this thread. After that pulse then I had less pain in my shoulder. I have since had pulses in other places with less pain to follow, so I think it's having an effect.
The other book that influenced me is Norman Doidge The Brain's Way of Healing. In there he discusses many modalities. I've been using red and infrared LEDs that my husband mounted in an old bicycle helmet and also a red and infrared laser that I apply to my brainstem, cerebelum and motor cortex. Finally in the book many people had success with a PoNS (Portable Neuro Stimulator). This device stimulates the tongue which has a pretty direct connection to the brainstem. The theory is it helps the brain achieve homeostasis. (A woman w/ PD got rid of her tremors after using the PoNS for 6 months.) Since the FDA didn't approve it yet I'm using a TENS to try and do the same thing. I started the Laser in July, the TENS in Sept and the LEDs in Oct. I know it all sounds a little flaky, but I've been seeing improvement in my gait -- less people asking if I hurt my knee because I'm walking funny.
Does anybody else have alternatives they're trying with success?
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here's some food for thought. shortly after i was diagnosed i had all my mercury containing fillings removed and replaced with ceramic fillings. i didn't do this because i was worried about the mercury - dentists have no higher incidence of pd than the general population - but because my dental insurance was expiring. 2 days after removing the amalgams my pd symptoms were worse. so i searched the internet on mercury/pd and it seemed there might be a link so i decided i would try to remove mercury. i knew a lot of pharmacists, my job was installing/maintaining pharmacy software and got the name of a MD who did chelation via IV's. she felt she could help me and i did about 4 IV's whose composition was secret. at $125/IV and no evidence it would help i found a cheaper method, a sulfur containing amino acid which i could get OTC and another drug that required an RX. To make a long story short, after a month of taking these drugs EVERY 4 HOURS i quit. i also tried IV glutathione, low dose naltrexone, and numerous other supplements, i might have quit too soon but my pd progressed slowly which might be due to vigorous exercise, dunno. my point was that whenever i spoke to anyone wanting to give me an alternative med treatment, they were sure it would help even though they couldn't name one person who had positive results but they sure would like to help me keep on trying different supplements, maybe one would help and they would need to see me quite often. and keep in mind there is a huge placebo affect with pd'ers. with social media, if some alt treatment worked someone would have tried it already and everyone would be doing it imho. exercise works so a lot of people are doing it, when the first article on forced exercise on tandem bikes came out it showed up here almost immediately as you can see from this thread. also keep in mind that EVERY clinical trial trying to put genes or cells or compounds that might stimulate nerve growth have had highly successful phase1 results but failed miserably in phase2 which took into account placebo affect. very few compounds pass thru the BBB so surgery is required to get something inside your brain. not to rain on your parade but be careful.