Recently, a member of our Parkinson group passed away from MSA. He got progressively worse in the very short time and we just heard that he passed away recently. Our meetings kind of stopped, we had couple on Zoom. As far as I know there is really no hope for the people that live with it. This is a very interesting article and again who knows it might help.
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parkie13
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In this a placebo-controlled, randomized, double-blind, parallel-group clinical pilot study, the authors assessed the efficacy of H2-water in Japanese patients with levodopa-medicated PD. Participants drank 1,000 mL/day of H2-water or pseudo water for 48 weeks.
Results
Total Unified Parkinson's Disease Rating Scale (UPDRS) scores in the H2-water group (n=9) improved (median, −1.0; mean±standard deviation, −5.7±8.4), whereas UPDRS scores in the placebo group (n=8) worsened (median, 4.5; mean±standard deviation, 4.1±9.2). Despite the minimal number of patients and the short duration of the trial, the difference was significant (P<0.05). "
The article states that inhalation is better than ingestion and based on some of the research studies I looked at a few years ago it would seem so. I have thought about getting a tank of H2 from a welding shop, filling a mylar balloon and huffing it - but abandoned the idea since this is something that could literally blow up in my face. The tablets for making hydrogen water might be interesting, but I am concerned about contaminants (magnesium supplements are often contaminated with lead); it needs to be chugged as H escapes rapidly and for that reason I would not trust hydrogen water machines - too much potential for leakage.
There are also humans studies - mostly done in Japan (and some are not indexed in PubMed, IIRC) so this is a real thing. I wish I had been better at compiling references a few years ago when I had done some reading on the topic.
You could set up a small electrolysis rig to generate appropriate amounts of hydrogen. A therapeutic dose is probably small enough to not cause a safety hazard.
MSA is quite a grim diagnosis but there is a trial ongoing for Sirolimus I am hopeful for (I wish they would try combining it with metformin), and there's another one for Verdiperstat which might be good.
For both MSA and PD I am looking forward to trials for Anle138b and inzomelid. Inflazome was recently purchased by Roche and I hope that means they intend to go forward with the planned trial of inzomelid for PD.
Susana Schnarndorf has been living with MSA for 15 years (first symptoms in 2005, diagnosed in 2008). She is an athlete and the documentary 'A Day for Susana' is about her training for the 2016 Paralympics in her native Brazil.
Hydrogen gas inhalation is a potent activator of the Nrf2 /ARE/ KEAP1 pathway, as are melatonin and the broccoli seed remedy that Albert is working on. There are many natural activators of this pathway and curcumin is another potent activator, but has poor bioavailability. The result of activation of Nrf2 is a very significant increase in total antioxidant capacity (TAC). In PD, MSA and many other diseases, TAC status is depressed.
I am a fan, but human research has lagged despite "very interesting results" in animal testing and some human studies. Here is a human study from 2017, but follow up studies are lacking in quantity and dimension. The huge potential is there, but more human studies are needed to help define the full potential of hydrogen gas inhalation.
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