Before I begin my 'bleat' I have uto admit that at some point, I realised that if there WERE any answers, I'd already got them after spending about a bilion hours researching the crappy disease. You can shout at the moon for as long as you like but it's probably not going to alter much! But there's something else, and this 'something else' carrys a warning: about 6 months ago I observed that a poster was celebrating the efficacy of B1 whilst ingesting copious amounts of C/L, I remarked that it was rather obvious that if you took 800mg of CL a day guess what..............you're PD symptoms might, just might, improve, I can only assume that this persons sensitivies were slightly disturbed and that he took his complaint to the playground supervisor as subsequently every time I try to comment or post I get a lecture on how I should behave on the site. Well actually I get it twice: a real bonus, but enough to deter me from wishing to continue.
So my 'warning' is this: be careful about moaning to the fascists that run this site. Once they have your name they really go totown on you and there's no adjudication or sense of awareness that they assumed the complaint might be in the wrong. He got in first, so he must be right. Right?
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HI Jeeves, I always enjoyed reading your posts (not this one!) and am sorry the CP administrators have unleashed the nanny state on you. Perhaps its an AI bot, not a real person? I still take B1 but I agree totally that when assessing supplement benefits, which can only be perceived symptomatically, that increasing meds dosage muddies the waters hugely.
i just posted the loss of friendship thing because i thought it might help others with similar experiences....your right posting is useless on these social websites. no matter what you post you either do it wrong or someone gets pissed.
Yes but their assumption that I was guilty based on snitch and tell was and is very concerning. But that’s the age we live in. Free speech is being shut down chronically because someone’s feelings are hurt. I’m not promoting aggressive behaviour but where does it end? My sensibilities are offended every time I see One Direction on the TV. So what? Get over it. When a teacher gets an approach from a child the first thing they do is say ‘let’s go and see what the child you’re accusing has to say about the charge’. So really the administration here hasn’t even reached this basic protocol!
As far as I know, this was the first occasion that I was complained after about 500,000 posts, and look what happens? God save those that have numerous complaints. Healthunlocked would probably lobby for them to be publicly flogged.
Sorry to hear this, jeeves, I must have missed whatever drama transpired that someone felt they needed to complain about what you wrote. I like what I have seen that you have written and you always seem to keep it real. Stick around, your input is needed.
Thank you all for your kind words. I will pop up once in a while as the site is too good to ignore given all your inputs and inspiration. Very worthwhile. But even in writing this response I'm given the lecture page about how I should behave and offered advice on which topics might be deemed 'insenitive'. Have a good Christmas all and I wish you the best in 2022 in your valiant attempts to combat this disease.
I am with you all the way, it really makes me furious at my age to be told what I can and cant read or see. The founding principle is free speech, we have a brain and can decide to accept or reject things, we do not need big tech or anyone telling us otherwise.. So wound up writing this my tremor is severe..
Well Jeeves you're not wrong. But I've always liked your spirit and pluck. Maybe I should have given you more heads up or thumbs up or whatever approval would keep you in visibility. I'm glad you have learned a few things but I still like your spirit and pluck and your efforts and would definitely care to see them continue, perhaps the scars of experience will have some use after all. Cheers in any case but I still hope to see you around. Truly. I only spent a brief time in England, some brief 18 months for college, but during that time I learned a word that seems to describe our tormentors, although it seems to be a bit of a colloquialism so I can't claim to be entirely accurate in the use of the term, think of me perhaps as the "ugly American" or actually just "American" since the term by itself seems to serve without qualification, but I do remember it and it seems to have some cultural meaning. Perhaps the human problem to overcome is to learn how to recast one's terminology, the "rag" that wipes one's arse recast as artisanal embroidery, if you know what I mean. Anyway, as to the term of art, or d'art I guess, describing our gentile ministerial helpers, does "wankers" ring any kind of bell?
Marion. Thanks for taking the time to write such a generous and warm response. It must have taken you some time to knock all of that out which is very thoughtful considering you’ve never met me! Take it easy and I’d better not use the W word as the Thought Police might be watching over my shoulder 😫
JeevesI am surprised this has happened to you of all people. I have always thought of you as a model poster with affirming and encouraging words for everyone. I’m afraid I get too annoyed by posts such as you mention where a person attributes miracles to the wrong thing and I get rather short with them. You were an example to me of responding constructively.
Is the “lecture page” specific to you or could it be the one I got for a while, comes and goes. Could it have been a blanket post to everyone?
Hello Hikoi. Thanks for that and sorry I’ve been a bit late in replying. Your encouraging words were most welcome. I think it’s some generic ‘do’s and don’ts’ guidelines. It’s annoying because every time I write anything it comes up informing me ‘how excited’ they are to be promoting my views but then they seem to want to lecture me on how to behave. 🙄. I’ve written to the moderator and am waiting on a reply. Time will. All the best ‘down under’ 😊
Keep posting jeeves i always read your input. My obvious untechy thought is change your sign in. Its becoming a war with the robots. Bllody control freaks do they really hv nowt better to do. Keep ur spirits up x
Hi Jeeves, nice to hear from you. I am still rattling on about fast walking, but it has had marvellous results, so it has nbeen worthwhile!
Did you read the Mayo Clinics report on the established fact that GDNF and BDNF are both produces by maintaining a high level of exercise over a reasonable period of time. It also reminds us that GDNF repairs the damaged Glial cells, which manage the eproduction of dopamine. So we have more dopamimne and less symptoms! Magic!
I have been saying this for the past 17 years, but who listens to a fool who lives in the backwoods and has nothing to do but pester Pd patients to take up fast walking and actually getting better! but who wants that? Certainly not the pharmaceutical industry and maybe the more business-minded neurologists!
I can RATTLE ON, but the effect has been very gratifying, with people getting better all over the world!
You obviously have not seen the Mayo Clinic reort in 2018 that completely backs up what I am telling everybody. Maybe you are not interested in thisngs that don't agree with your backward thinking!
I have read the report. I'm willing to bet that you have not read it, however, since:
- you rarely bother to read even the posts you are responding to
- nowhere does the report say anythinglike this "GDNF repairs the damaged Glial cells, which manage the eproduction of dopamine. So we have more dopamimne and less symptoms! Magic!"
- nowhere does the report talk about "getting better"
- it does talk about how the GDNF did not succeed in a clinical trial (which of course you ignore)
Whether or not elevated levels of BDNF and/or GDNF are the mechanism by which PD progression may be slowed by exercise in humans remains to be seen.
Why is JohnPepper the whipping boy here? I want to know the root cause of PD. What causes low levels of dopamine in the brain? What causes elevated levels of dopamine in the brain? I've tried a shit-load of remedies from B1 to meditation. Never saw improvement from any of them. I take Rytary and Memantine. That combo seems to help me but I still want to know what the root problem is. JohnPepper says fast walking works for him. I assume others have tried it and it didn't work for them. I don't know whether it helps me but I add it to my daily regimen. Right now I'm wondering if my brain is not making enough dopamine or if dopamine is leaking out through the BBB. Years ago I had an MRI that showed leakage of something but not what was leaking.
If you know what GDNF stahnds for, you would see how ignorant you response is. It satnds for GLIAL DERIVER NEUROTROPHIC FACTOR! Neurotrophic means nerve repair/replace. THe glial cells sre the cells which manage the dopamkine producing cells. Therefore the more Glial cells the motre dopamine.I am not sure if the date was 1993 or 2003, Ithink it was the former, a trial was held in the Frenchay hospital in Bristol, England, in which 6 well advanced Pd patients received a staedy dose of artifical GDNF pumped ot of a container in the abdomen, rgrough a tube into the substantia nigra area of the brain and after 6 months every patient's condition had improved by +- 60%.
I would have assume that this fantastic result would have been followed iup by other studies looking for ways of producing natural GDNF in the brain, but to the best ofm my knowledge, nothing was done in that direction.
To me, this news of GDNF was wonderful because aaaaai had just started to do my fast walking and i had also started to feel better. I tried everywhere I could to find out if it were possible that My brain was producing more GDNF because of the 'Fight or Flight' effect might have on the brain when walking flat-out. Aftee all, walkimng flat-out for an hour is not natural. If I were in a hurry I would run.
I tried to motivate a study via the British Pd organization called Spring Times, but they were not in the position to do such a study.
I got the impression, and still have it, that the medical world is not interested in finf=ding cures for health conditions that don;t kilol us. That includes Pd, Alzheimers and dementia. Why cue a condition that yields hoge sums of money from dealing with the symptoms and not the cause. Just imagine how much money big pharma would lose if we has a cure for those three helth problems?
I call it a clash of interests! We patients want a cure, while the medical world does not. Plain and simple.
I have not needed to see a neurologist or take any Pd medictaiomn since 2003. That can't be good news fpr thje medical world!
Wake ip and realize what id going on. The Mayo Clinic findings agree with the Frenchay folpital findings, only 18 years later.
What would he have to do with whether Pd paytients should take what type of medication, which does nothing or fast walking which does a lot? My guess is he would go for the thing that does you no harm!
The "mayo clinic findings" literally call out the failed GDNF trial that you have been told about 1,000 times and have ignored every time.
If what you say is correct about GDNF dopamine flight or fight blah blah blah blah blah, there would be thousands if not tens of thousands if not hundreds of thousands of PwP walking around more than a decade post Dx and completely off PD meds. But you have never been able to point to one person in this category, and have previously admitted that you don't know of anyone in this category. The best you have ever been able to do is vague references to unidentified emailers that have told you that they like walking and it makes them feel good.
John. I've seen the report. It doesn't say that. Glial cells don't produce dopamine. You have no idea what you're talking about. Stick to encouraging exercise and a positive attitude and you get my support. Talking drivel about subjects you clearly don't understand makes you look a bit sad
I understand the appeal of conciliation, but the only circumstances in which John "encourages exercise" is when doing so operates as a lead-in to the promotion of him and his story. He is, in fact, quite negative about any and all other forms of exercise because they all go into the same bucket as his "the gym made me get worse" anecdote. Nevermind that theres no evidence of him ever trying most of the other forms of exercise that get mentioned. Never did cycling, never did boxing. Still though, he dismisses them because they don't heal the damaged neurons in the same fairytale fashion that fast walking does. Because of gdnf, flight or fight mode, unnatural stuff, whatever.
The wholesale misleading of the uninitiated and desperate (in other words, the newly diagnosed, or probably just as often, spouses of the newly diagnosed) should not be forgiven so readily simply because there is *some* overlap between what he advocates and what might actually be good for you.
My conclusion after many years considering exercise in relation to Parkinson’s is simple: the goal is 80% of maximum heartbeat and how this is achieved is immaterial. And actually, I was never able to reach this state via walking 🚶♂️. I monitored it.
Too cryptic for me over breakfast Winnie.🤔😂. If you’re inviting me to move into a dilapidated chateau down the road then I’m your man ( but my wife would need some persuasion sadly).
My max heart rate is 170. 80% of max is 136. On a treadmill that's fast walking at 5% incline. But I think I'm coming down with a cold--shivering and congested--so I don't know whether I want to try it today.
I take the dogs for walks in the mountains nearly every day. One of the routes takes me down into the valley of the Ruisseau de Granes, past the old water mill (le moulin) and back up what may be the steepest minor road I know. I have worn a heart rate monitor whilst doing that walk, and without breaking into a jog but pushing it, I can hit 130+ with ease (I'm 60, so 130 is plenty).
That said, if you're ever in the Eastern Pyrennees, when the world returns to normal, and fancy testing the theory for yourself, then give me a call
Hi John, Most of us here knows that high intensity exercises are very beneficial for the PD and it’s progression. I have read your book and really liked it.My understanding is that you offer your advice to PwPD on how to do the fast walk. Knowing that all of us here are PWPD and need to exercise and you offer your advice for free subject to receiving someone email, why don’t you create a post and describe your fast walk method there once and for all to avoid friction with other members.
In how many posts you have kindly offered your advice and people objected to that(no matter right or wrong). Please correct me if I’m wrong.
I cannot help thinking that my detractors are not Pd patients but people who make a living out of the sufferings of others, and don't want to encourage others to get better, it would be bad for bnusiness!
I have a website that I am not allowed to post here. All the material and videos together are a great deal of information and too big to put in a dozen posts. I am 87 anf incapable of using all the modern ways of communication.
Everybody has their own questions that worry them and they need answers they understand.
When patients say they are not getting the requires results from this or that medication, I don't think I am out of line by suggesting they look at somethng that really can reverse Pd symptoms. After all, everybody is looking for ways of overecoming their Pd!
"I cannot help thinking that my detractors are not Pd patients but people who make a living out of the sufferings of others, and don't want to encourage others to get better, it would be bad for business!" Agree 100%
They never post, hijack the conversation and spew vitriol in their comments - they really should be banned. Just watch
Thanks for the reminder. I have been posting positive posts since I started on this platform. I cannot go on repeating myself. I have genuinely been able to turn the tables on PD and I encourage everybody else to do the same.
When any product is advertised that does not and cannot reverse the symptms of PD, here on this platform, I should be able to offer an alernative that actually reverses the symptoms of PD. I don't make a cent out of doing all this work.
For those readers who really want to turn their lives around, I think that discussion is all about pro's and con's, not about making claims that cannot be proved. I can prove all my claims by giving a long list of other people who have listened to my advice and are now living normal lives again. Isn't that what discussion is all about?
For Christ’s sake John.,Read the title of the post- any post - and try to respond accordingly and with relevance. You need to stop these insufferable if well meant intrusions.
There is no evidence of PD in it at all, as far as I can see. Yes, he has an intermittent action tremor (which is not a cardinal PD symptom). There's no evidence of bradykinesia. No masked face. His posture is no worse than the typical 80something. He walks at least as well as a typical 80something. And this is 24 years post diagnosis! He's able to paint tiny little lines on a painting for god's sake. 24 years post Dx, and according to him, 53 years after the appearance of symptoms. All thanks to walking? Cmon.
This isn't what 24 years post dx PwP look like when they are able to "manage their symptoms pretty well". It's what 'not having PD' looks like.
My dad had atypical Parkinson's. Not everyone looks the same. I don't care to argue. Haters gonna hate. I'm so tired of criticism, judgement, anger, hate spewing out from everyone. Don't fast walk then.
And I'm tired of people being mislead and sold false hope based on false pretence. Im tired of the deliberate misrepresentation of science and fantasy masquerading as fact. I'm tired of the relentless spam. Often times in threads where it isn't the least bit relevant. In this very thread, the opening poster made it very clear he was not interested in John's evangelising, yet John wouldn't honour the request to go away
If someone came here and relentlessly misrepresented a drug (that they happened to have a book for sale detailing the use of) in the fashion that JP does 'fast walking', there would be a lynching.
And no one is forcing you to participate in the discussion.
Freedom of speech! What a joke! My parents grew up in a communist country and they were told daily about the freedom of speech and the people's democracy in socialism compared with the pseudo-democracy in the western countries. Now, using my experience and my parents experience , I can say the freedom of speech is limited to whatever the masters want to hear, no matter the place. The internet is full of "little dictators" who are admins of the forums or FB groups who enforce the rules established based on their sensitivity. I never liked the communists but I have no choice and agree with their evaluation of so called western democracies. And the covid 19 is the latest proof.
Personally I respect everybody's opinion no matter I agree or disagree with it, I don't feel offended if someone is contradicting me and I think the unjustified sensitivities should be for the kindergarten kids.
Hey Jeeves! Don't stop posting because Big Brother is watching- You have fantastic posts that enrich and inspire the majority on this site.. I remember that post u commented on- and it makes sense- Levodopa is the gold standard for pd and dose is increased to negate symptoms...
It is a shame that one must be so politically correct nowadays, or risk getting axed..
You can change your settings in your profile so that it's only members who see your posts. I'm aware that what I write is public and I'm okay with it - you never know who needs to see the message. Really early on in my research, I came across a post from a man who put his plea for help out into the realm of the internet - he had ALS and was dying. He said, "I've been poisoned, can anyone help me?" It rocked me to the core. I write on purpose - so that whoever needs to follow my breadcrumbs after I'm gone, is able to.
Please keep posting. I really have enjoyed your input. I had a few negative comments at first that discouraged me but then others came to my defence and encouraged me. Saying that, I truly like different opinions. I like to understand the pros and cons, so that I can decide for myself. I truly like and value your opinion, so please feel supported by so many of us.
Palm. Check your private messages would you? I must have writ you twice over the last year but never heard back. Looking forward to hearing from you. Thanks
Not all things work for everyone. I found out I don't have PD after multiple neurologists. MRI showed Cervical Myelopathy that can look like Parkinson's.... (shuffling walk, tremor, etc.) From this site I got on B1 and a few other supplements I'm still on...many for sleep aids. Subsequently the MS site and a great book on it gave me some supplement ideas as acute CM is a spinal compression and MS is spinal lesions.
Swallowing pills is another story but I would be in much worse shape. I am 70, Covid hit, Saskatchewan CA health care is in trouble as are many provinces and I doubt surgery is in the near future. Some days I am hanging on by a thread but I have the help of B1, multiple B's including B12, known to increase stamina in spinal cord injuries. I had bad ataxia but with B1 it is almost non existent. The neuro didn't test me for any of those deficiencies which can cause ataxia. (He was a dud)
I was at first sceptical but after trials and errors I know they work... possibly blockage in CFS causes loss of nutrients and cleansing of the brain and B's replenish something in there like NERVES!! Whose nerves aren't affected by these diseases never mind Covid, disasters and typhoons. If we aren't nervous wrecks at times we're made of steel.
B's also seem to block the insistent (when I stop swallowing pills for awhile) ear ringing. It had gotten to the point of constant and now only comes back when I stubbornly stop swallowing pills. B's can't hurt anyone in modest amounts, advantage known only by ourselves. We are all unique as you are too! I think of your past posts fondly as you are modest and more humble than some others....wonderful qualities in my book. I haven't been posting either but you made me....🤣 😍 I hope this helps your view point. 🏞🏕
Jeeves and other CP members: Since I am a resent ‘lurker’ this site may have covered this before…may I suggest you pull up and look at Dale Bredesen and his ReCODE 2.0 Protocol. It is not a program specifically for Parkinson’s, it is treatment for SBI (Subjective Cognitive Impairment) and MCI (MIld Cognitive Impairment). BUT…the report denotes YOUR specific brain inefficiencies and helps define your toxic overload leading to the causes of cognitive decline. And of course that is what Parkinson’s is, bottom line it is a neuronal disease, neurons are not functioning properly. Take a look…search key word Dale Bredesen, MD and apollohealthco.com and even me, JanetRichPittman.com. I am a Bredesen ReCODE (Reversing COgnitive DEcline) 2.0 practitioner and health coach specializing in dementia prevention and dementia reversal. I don't receive a commission or have financial affiliation with him, his protocol works. Helping with your options, uncovering tools for your toolbox…Janet
Janet. You’re very kind to have alerted us to this. Thanks. I have been aware of Dr Bredesrns work for several years but if I’m being brutally honest, I don’t have the self discipline to apply his protocol nor Terri Wahls for that matter. Hard to admit to but true 😕. In addition, I had full blood 🩸 test last week and every organ is apparently working perfectly, low cholesterol, healthy blood sugar and all vitamins good too. Like I said to my doctor: how can somebody so sick be so healthy? The brain is sadly a mystery and is not always in step with overall general health I feel.
Good to hear all your blood work is good, low cholesterol and more. My hubby's neurologist didn't promote vitamins or HB1. I do though. He's doing the best he can with his PD and this site is very valuable to me and all the people like yourself who post with credible information.
Keep me in the loop if you ever establish this Winnie. Cheers for the kind compliment. I did just think about a WhatsApp group but then it’s just a continuous dialogue stream without topic headings. At least these facilities are all freely available on Healthunlocked.
Yes. A forum would take some work - but maybe we could have a team of moderators. I have seen and participated in break-away Hi-Fi forums (fora - for the latin bugs). I need to get past the 31 January tax return deadline, and then migrate my practice to new software I have identified, but might look at setting one up after that.
This thread is a great example of the poor (non-existant) moderation with John Pepper once again trampelling all over it and making it about him. Any decent moderation would tell him to stay on topic, and either delete his posts (and responses to them) with a note explaining why, or move them to a new topic called something like "The vanity of John Pepper" or "Shit and drivel about GDNF"
Of course, the way this forum is moderated, I might just have cost you your entire thread
"with John Pepper once again trampelling all over it and making it about him" Why do you feel compelled to comment on what JP writes - it seems like you are reflecting and making it all about you.
Oh, no! I’m so sorry. You’re a truly valuable member of this site. You’re always willing to share knowledge and insights. Good grief. Or should I say good heavens? I hope you don’t leave the forum. I suppose since we don’t see each other when we all post, there is also the risk of either misunderstanding or being misunderstood. But that’s no reason to assume you meant harm rather than just expressing your thoughts.
I’m Team Jeeves! I hope you decide to stay, A. Like I said, you’ve been a good friend to all of us. We will never learn from all of each other if we don’t sometimes disagree.
Thats a lovely thing to have said. Thanks for your kind words. No. I won't leave and thankfully the 'lecture' seems to have been removed but im unsure why. Glad its gone though. Happy New Year to you!
It’s when someone lies to convince someone else of a false narrative. She is not using it correctly. Usually it is applied in abusive situations. Given the fact that she is responding to a Six month old post, it smacks of a desperate need for attention.
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