Does anyone here have experience with his approach to curing his PD? His story is very similar to mine. I, too, spent years in a monk-like lifestyle meditating and teaching TM (Transcendental Meditation). Then I got into writing books and working crazy schedules like 18-hour days. I wrote 47 large (typically 1000+ page) books in 20 years. I was running a startup tech company at the same time. Then I melted down when my relationship went south. Serious mental breakdown, insomnia, depression, anxiety. I fell prey to various infections such as Lyme and its co-infections. This lead to years of antibiotics, both oral and IV. A few years later the tremors started. That was 15 years ago.
Does this sound like your story? Were you an overachiever who developed PD at the height of your career? I'm curious to learn more about possible connections between PD and personality, lifestyle, etc.
BTW, I host a blog about PD and Lyme with over 1000 articles and studies on these topics. The address is bobcowart.blogspot.com. It's free.
Your comments welcome.
Bob
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I tried his shakes and they seem to help my tremoring foot but not the rest of my symptoms. He admits that you may have to look into the Hinz amino acid protocol.
Gray’s therapy is based on the Hinz protocol, which uses oral administration of Amino Acids. I am not convinced of the validity of that approach. I tried it for couple months when first diagnosed and noticed no benefit. Which proves nothing as I was not under professional care and could easily have been doing it wrong. The whole thing was rather complicated and expensive. Additionally Hinz and Gray are highly prejudicial towards the use of c/l, which many of us rely on for symptom relief. To me that is indicative of a cultish mindset which I find counter productive. I was fortunate to find a great acupuncturist and moved on to TCM scalp acupuncture and herbs which have been working well for me, along with Mucuna and c/l.
"Hinz and Gray are highly prejudicial towards the use of c/l,"..." indicative of a cultish mindset which I find counter productive.".....
Taken of of context and therefore somewhat incorrect. Hinz is negative about the use of carbidopa with L-Dopa to avoid dilution of L-Dopa through the PNS. He believes this approach has lead to a higher incidence of mortality among PD patients than with L-Dopa alone.
The problem with arriving at Hinz's mortality conclusion is the validity of the national US data on mortality due to PD as the primary cause is questionable and minimal, if non-existent on a consistent basis.
Your attempt to use the Hinz protocol without his extensive series of lab testing is not something I would recommend for anyone. I discussed this at length in another thread about non-professional, non-clinicians using the Hinz protocol without his involvement. It is your protocol; not his.
Glad to hear acupuncture worked for you. It has value: "We performed a systematic review and meta-analysis to evaluate the use of acupuncture for relief of PD symptoms and found that acupuncture has significant positive effects." from Clinical effectiveness of acupuncture on Parkinson disease, 2017. Perhaps a trifle over optimistic. However, in contrast in another study, SA was not seen in the same positive light.
My hwp used Dr. Gray's formula and then went to Dr. Hinz. Mhp would still be considered phase 1 on PD scale. It has worked for us with no side effects, for 6 years. Now, we will try anything other than pharma. You realize pharma has bad side effects and you don't get better. We are thankful for B1.
Thanks for this. I hadn’t realized that is what he was doing. I watched a different Gray video a few years ago on YT that lists all his suggested stuff and I can’t find it now. Will have to look again. I know that Marty Hinz, Alvin Stein, et al. are very down on c/l , as is Chinese doctor Janice Walton Hadlock, who claims to have helped many a PDer but only if they have not used any dopamine replacements or agonists. (She is based in Santa Cruz at Five Branches Chinese medicine clinic and college.) Janice has written two 500-page e-books on Parkinson’s disease and Parkinson’s disease drugs. They can be downloaded for free the last time I looked, btw. I did her protcol for a bit, back in 2007 when I was first diagnosed. I was only having slight tremors at the time, in one foot. Janice claims to have discoved by accident that PDers often have some unhealed foot injury from childhood that once healed stops the Parkinsonian symptoms. That’s the simple synopsis. She has 1000 more pages on it all. If anyone has studied up on her work and done more than about five sessions of her treatments, I’d like to hear about that.
I have read Janice Walton Hadlock‘s books and tried her Yin Tui Na technique for about a year after my 2016 diagnosis, in the spirit of “ what the hell why not, could it be this simple?”
It didn’t cure my PD, however my very painful plantar fasciitis from running did resolve very speedily, I guess I can’t directly attributed this to the technique, but chronologically it may be significant.
How do we know John Grey has PD? Anyone can claim anything on line. The earlier video he made he claims to have cured his condition which he called pre pd. Personally Ive never heard of it and i dont believe it exists.
This is a good point and one I've thought about a lot over the last 13 years since my diagnosis. That is, how do you know whether a diagnosis is correct? Especially if, like PD, the symptoms of a disease could be mimicked by many other diseases. Even after my PD diagnosis, my Lyme doctors continued to believe that my tremors, depression, anxiety, and brain fog were the result of ongoing infection and inflammation. I was diagnosed with chronic Lyme disease by five different doctors prior to the PD diagnosis. I was responsive to sinemet as well as to antibiotics and to other stuff like acupuncture. All pretty confusing. One neurologist ordered a DaTscan which came back positive and he said ok, that's conclusive. It's idiopathic Parkinsonism. Lyme can imitate over 300 different diseases because it can penetrate most every kind of cell in the body, given time. Anyway, it seems to me that there might be different kinds of PD or Parkinson's syndrome, Parkinsonism. I have asked expert researchers at events such as M.J. Fox whether they know of anyone doing research on the possibility of bacterial or viral or parasitic infection causing PD, and so far I have gotten a negative on that, which I find surprising.
Well that would class PD as an infection. I dont recall people talking on here of having particular infections before diagnosis. Do you think an infection was responsible for causing your pd?
I actually doubt that John Grey saw a doctor. Probably he self diagnosed.
Lyme is very definitely improved, if not cured, with ozone therapy. We helped a woman with Lyme in our small community improve her lyme, through an ozone sauna. The best results are with autohemotherapy. Research it.
Thank you for posting this, and for the link to your blog which I will check out later.
Yes, I would say I fit the profile of the high achiever struck down by PD at the height of his career. A typical A-type personality, very focused and driven, highly self-critical.
I worked in the feature film industry, on many very well-known Hollywood animated feature films. I won’t specify my role as I wish to remain anonymous. However, I can say that I ran an international department of up to 150 people, and was responsible for management of that team, as well as creative direction of the aspect of production covered by my department.
I taught myself the computer software that was used to make these films, basically spending a year in my bedroom slogging away at the computer. After working in the industry for a few years, I found myself in the position of building my department from scratch, and in a 10 year period developed the department into a world leading, extremely efficient and well regarded entity.
I also was passionate about the well-being of my crew, and saw it as my duty to shield them from company and industry politics so they could concentrate on producing great creative work with minimum impact on their lives (not too much overtime for example). In other words, I absorbed a lot of stress on behalf of others, which at the time seemed fine, as I felt bullet-proof, but in retrospect was likely a strong factor in the aetiology of my Parkinsons disease.
Apart from work, I approached pretty much everything in my life with single-minded focus and determination, from doing martial arts at an advanced level to taking up running at age 50 and pushing the limits as hard as I could. I sold this to myself as “relaxing”.
Much of what John Gray says in the video you posted resonates for me, especially the man-cave downtime dynamic he describes. Sounds like me for sure.
The first thing I noticed that I was later to attribute to the onset of PD was a general slowing down of my reflexive responses and an apparent loss of some muscle memory in my martial arts practice. This meant that I started being injured more, including several broken noses and concussions from sparring incidents. It was interesting turning up to work looking like I’d been in weekly bar fights, black eyes and bruises all over, LOL. At the time it seemed plausible that I was simply exhausted from my massive work schedule, but after a particularly heavy head blow one sparring session (my last ever) I began to notice a cascade of symptoms which eventually led to my diagnosis of idiopathic PD in late 2016. A recent quantitative MRI shows evidence of a traumatic brain injury, possibly one of my sparring concussions or an accumulation of them, possibly a surfing accident also from a few years ago. Also shown in the MRI is shrinkage in certain areas of my brain, attributed to pathogen insult, correlated with a highly elevated level of gliotoxin in my urine, indicating exposure to black mould, understandable since my house had water penetration issues which were extremely difficult and time-consuming to resolve.
Even after my diagnosis, I was bloody-minded and stubborn enough to continue working on two more films, despite obviously deteriorating and generally looking like I was at death’s door… I think I literally was.
I finally bowed to the inevitable, and with the support of my neurologist quit work and walked away from my career. A move that I think they possibly have saved my life.
Apart from taking a very deep dive into neurology and integrative health, I have actively re-imagined my life, becoming much more spiritually oriented and much kinder to myself, keeping as free of stress as possible, meditating, practising pranayama, staying fit but not overdoing it.
I am trying all kinds of therapies and logging the results scientifically, the most promising so far being Photobiomodulation aka Red light therapy, and the Hinz protocol. I am in the early stages of this protocol, and as expected feel pretty unwell most of the time until equilibrium is found with the relative amino acid balance. However, I strongly believe that the so-called gold standard treatment of levodopa/carbidopa is not for me, without going into it too much in this post, because of the short duration of therapeutic benefit, and the longer term tachyphylaxis with attendant side-effects such as but not limited to dyskinesia and mood alterations.
I could keep writing for hours, but I feel this is probably enough for one post. I hope it has contributed to the discussion.
I’m doing ok. Not fantastic.Still off the meds - I tried Sinamet and it made me feel awful, took me a few weeks to retain equilibrium after stopping.
I’m just laughing at myself having read my post again....the post itself is such an alpha personality effort, even as it identifies that approach to life as not being the best for dealing with Parkinsons.
So I’ll keep this brief rather than writing another War & Peace, lol.
Red light helmet- good, still use it.
Hinz - dropped my Doctor who I felt was overdosing me with mucuna and not listening to my concerns, managing my supplements myself based on Hinz approach, finding that working “well enough”.
All in all I’m doing well with some horrible rough patches here and there, but no complaints.
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