...Dysphagia in PD is perhaps the most important drug resistant symptom as it leads to aspiration and pneumonia, the leading cause of death. Here, we present direct evidence for degeneration of the pharyngeal motor nerves in PD.
Yes, there are many different types of Pd, but they all have one thing in common - they all have damaged brain cells in the substantia nigra. Please correct me if I am wrong.
To the very best of my knowledge, and I a not a scientist, the natural protein, GDNF, has been the only thing so far that has been shown to REPAIR THOSE DAMAGED NERVES! I am aware that some study tried to prove that GDNF is toxic in the brain, but that is a load of rubbish. Perhaps they meant that ARTIFICIAL GDNF is toxic in the brain.
Why are we dwelling on the differences in the various forms of Pd instead of concentrating on the ONE COMMON FACTOR?
Let us spend more money and time on finding a way to get the brain to produce MORE GDNF.
I have every reason to believe that this can be done, as it has happened to me! I know this is not good news for the drug companies but that is not our problem. We should all be interested only in looking for something that will help us either overcome many of the symptoms of Pd, as I have, or find a CURE, which is not in the interests of the drug companies.
Let us all contribute towards organizing a STUDY TO FIND THE BEST WAY TO INCREASE THE PRODUCTION OF GDNF IN OUR BRAIN!
Thanks for this info. I am aware of some of these ways but EXERCISE is a very easily accessible and cheap way of dealing Pd.
There are many forms of exercise that could be better than others so why not find out which is the best. It would cost far less than looking for one more way of treating Pd symptoms
It is about time that we take action on this matter. Do I have any support for this?
Ironically, I bought your book back in 2013. Tried to get my husband to follow the walking but he was into another fitness regimen at the time. Right now he's trying to get over a bad drug interaction which has left him with increased PD symptoms and terrible fatigue. Once he gets some more energy back I will suggest this to him again! Thanks for your help.
He was doing a fitness regimen through Lifewaves when first diagnosed in 2012. He did that for a couple of years on a committed basis and then sort of intermittent the next couple of years - it was a program he found out about through the PD group in Greenville SC. The thing that concerned me is that he always tremored more after the exercise (bike - intermittent with a chest monitor for heart rate ...) and would have to lay down. He didn't go on Sinemet until Dec 2016 when he fell and wound up in hospital. They immediately put him on a higher dosage than his neurologist had recommended. Personally, I don't think it helps him as he tremors almost all the time, sometimes pretty badly. It doesn't seem to matter whether he takes a higher or lower dose. He may be one of those pwp's who doesn't respond. Anyway, we are trying something which will hopefully get his energy back enough to get back to some more serious exercise.
Long story that should have been a short answer :-(.
You HAVE TO ACCEPT that there is no Pd medication designed to SLOW DOWN THE PROGRESSION OF PD! Therefore, expecting medication to make him feel better is barking up the wrong tree.
I don't know if what I am about to tell you will work for him but it is worth me telling you what it is, FREE OF CHARGE! I know that something that costs nothing is not worth anything, so it is said, but you have to make that call, not me.
Contact me on my website - www,reverseparkinsons.net and I will send you all the information you need to make the decision of whether you think it will help him or not. What have you got to lose?
When patients start trusting retired print shop operators to (mis)interpret science for them, to prescribe dubious solutions, and to propose nonsensical studies based upon naive and ill-founded conclusions (i.e., a single subjective, undocumented, unreplicated, entirely anecdotal case of "reversal" of "some of the symptoms") we're all doomed.
A couple Amazon reviews of JohnPepper's 2002 literary farce, 'Reverse Parkinson's Disease', accurately describe the fundamental problems with JP's credibility. Unless/until he is able to address these concerns, he has none (still waiting 15+ years after publication):
"Do NOT expect genuine 'reversal' by any contemporary sense of the word... The author has yet to provide credible evidence of both an actual Parkinson's diagnosis and - most importantly - whether he's actually accomplished anything beyond the general improvement of symptoms experienced by anyone who follows a regular program of vigorous exercise. The fact that - 15 years since original edition - not a single neurologist backs his claims of disease "reversal" should provide a clue: this book belongs in the 'fiction' section." 'W.D.'
"I do not doubt the sincerity of John Pepper and in the importance of exercise for people with Parkinsons. I do doubt his diagnosis as do some doctors, he freely admits this as well as describing his tremor as an action tremor not the resting tremor of Parkinsons and that sinemet made no difference to his symptoms. A positive response to sinemet is a common way to diagnose Parkinsons as opposed to other similar conditions. It is interesting that in all the years John Pepper has been advocating this method he cannot point to one person who has had the ongoing good results he claims..." 'rochfort'
Let me address this so-called PDCONSCIENCE. It is clear that he has an ulterior motive in his constant attacks on me and my book.
1. I did not know I had to have special qualifications to become a Pd patient. Maybe his conscience has something to do with that.
2. There are far more good reviews of my book than the one he has chosen. Perhaps that is why he has a conscience.
3. He purposely ignores the fact that Dr Norman Doidge came all the way from Canada to check into my claim, "To have overcome many of my movement symptoms of Pd" by examining all my medical records of my GP and two of my Neurologists. Maybe his guilty conscience relates to his ignorance of these FACTS or his failure to take note of them!
4. The diagnosis has been confirmed by 4 neurologists, Can they all be wrong? Can his personal diagnosis, without ever knowing me or examining me, be better than theirs? Maybe that's why he has this guilty conscience!
5. His ignorance about various types of tremors that occur with Pd is amazing. He is trying to influence others against my story because it does not suit his objectives. I would also have a guilty conscience if I tried to mislead others the way he does.
6. As for the statement that "I cannot point to one person who has had the ongoing good results I claim" is almost correct. I know of at least two people who have had the same results as I have and both have been active in telling the world about it. I would have to get their approval before bringing them into this childish exercise. It took me 8 years to get where I am still today, 16 years later.
I note that despite having 16 years to produce a single scrap of evidence for your farcical PD "reversal" claims, you remain unable to produce anything but a perpetually secret, never-seen PD diagnosis... supposedly confirmed by the ever-elusive, unnamed "4 neurologists", along with vague allusions to "at least two people who have had the same results" (perpetually unnamed). Like your book, your obsessive claims of PD "reversal" constitute a weak hodgepodge of pure fiction.
*N.Doidge is a psychiatrist who needed a good tale for a book he was writing. NOWHERE in the entirely anecdotal section about you does he ever endorse your claims of PD "reversal".
You are on a mission! Your assertions are ridiculous. How can I give you people's names on a forum like this without their permission? You would, I am sure, but I will not. If you read about people who have reversed their symptoms, because they have both done so, but you have never looked for that, and if you found them you would say they were false.
Why don't you come and see me, I promise I will not do you any bodily harm. If you want to talk to all my medical people and people I have helped you can do it first hand. You are a chancer, intent on destroying anything positive about Pd recovery.
I am sure that Dr Doidge, who is only a psychiatrist, will be believed before YOU are. His reputation is too valuable for him to write absolute rubbish without seeing the evidence himself. The specialists he spoke to, gave him their records to check, but your would not believe that would you?
Clearly a raging messiah complex tends to warp one's sense of reality. Only through the tangled mental circuitry of a committed charlatan can the temporary "reversal" of "some of the symptoms" be interpreted as genuine disease "reversal", however, and ultimately result in a farcical work of fiction like, 'Reverse Parkinson's Disease'. Unfortunately, JP is forever since committed to living the lie
Why don't you put your money where your BIG mouth is? Why not get off your backside and satisfy your suspicions, once and for all, by coming to see me and talking to my neurologists, who know first hand everything about me?
Everything you say is your WARPED OPINION! Nothing less. My Pd history is FACT!
Guys, so much verbal chest bumping here. If each of you would dare to take a risk - and sincerely pray for your enemy's well-being for three days in a row (your "enemy" in this case, being each other), you would break through to a new and incredible experience. And the person who risked doing it would be the winner.
Another thread highjacked so back to the topic. Thats a dense article which I find difficult to absorb. It's focus is alpha-synuclein and degeneration of pharyngeal nerves . I'm not sure I get your reference to subtypes, does it relate to the varying density of a-synuclein found in PD ?
I find it rather sobering to read that Approximately 50% to 80% of people with PD develop dysphagia and 60% to 90% of PD patients exhibit speech and voice disorders and that the mechanisms of these disorders in PD remains unclear.
Every time I have to take my medication I am aware of swallowing problems and wonder how to avoid aspiration. Maybe singing in a choir will at least address speech and voice problems but what can we do about dysphagia? Fast walking??
"I find it rather sobering to read that Approximately 50% to 80% of people with PD develop dysphagia and 60% to 90% of PD patients exhibit speech and voice disorders and that the mechanisms of these disorders in PD remains unclear."
For me, when there are pwp having a certain trait (eg dysphagia) and pwp not having that trait, then dysphagia provides a simple subtype. The matter is more complex because many pwp without dysphagia develop it, evev as some may not.
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Methylphenidate for \"Parkinson's\"
Dihexa peptide shows potential for PD and ALZ and (I believe) is currently available 
Hence forth, things I shall ignore.
