Can Growth Factors Cure Parkinson’s D... - Parkinson's Movement

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Can Growth Factors Cure Parkinson’s Disease?

iqbaliqbal
iqbaliqbal

cell.com/trends/pharmacolog...

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Am I wrong in thinking that growth Factors, like GDNF and BDNF are produced naturally in the brain? If so, why are we wanting to produce artificial GF's to make up for the shortage of those GFs in our brains?

Surely it is better to get the brain to produce more of those GFs!

I know it does not put money into the pockets of the medical profession or Big Pharma, but it is in the patient's interest to be told how he/she can produce more of these natural GFs?

I am sure that my body produces more GDNF by doing high-intensity walking, which has enabled me to live the past eighteen years without any Pd medication because my fast walking is obviously producing more GDNF.

The very name Glial Derived Neurotrophic factor tells us what it does, it repairs or replaces Glial cells.

If what I am saying is not correct then how did I get better?

ChrisWF
ChrisWF in reply to JohnPepper

"but it is in the patient's interest to be told how he/she can produce more of these natural GFs?"

Not when you have made it up to suit your story, no.

JohnPepper
JohnPepper in reply to ChrisWF

And who do you know has been told by his/her neuro has told them they can reverse their Pd by doing energetic exercise? Have you ever heard anybody at conferences and information-days talk about GDNF? I haven't.

The name tells us that GDNF repairs damaged glial cells. It is the glial cells that manage the production of dopamine, which is in short supply.

I have been able to reverse my Pd symptoms by doing fast walking. So I assume that my body must be producing more GDNF, hence the improvement in my condition. What else could cause my condition to improve?

I suggested in 2003 that somebody should find out how to get our brains to produce more GDNF but nobody is interested in something that makes us better! It is a conflict of interests here that will never change, Why would anybody go to any expense to find something to make us better. when we spend huge sums of money on medication, because the medical world wants us to live as long as possible, taking medication.

Have you ever wondered why we can find vaccines to stop us dying from terminal illnesses?, but nobody is even looking for vaccines to stop us getting Pd , or Alzheimer's?

I know companies say they have been looking for a cur for Pd but with no success. We don't know if they are looking for a cure or another way of treating these conditions. I know where my money would go on that one!

Patrickk
Patrickk in reply to JohnPepper

Bydureon, a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to Bydureon.

scienceofparkinsons.com/201...

cureparkinsons.org.uk/news/...

* * * * * *

I have found some symptom relief (don’t have very bad case) with Tumeric & black pepper (pepper makes it bioavailable) — recommended by a doctor.

* * * * * *

I just got off B6 (100mcg) -- which seems to be about the only dose available. Boy did it make a big difference. I ran into the post below on "Journey With Parkinson's. Had to read it four-five times -- by a biochemist.

MarionP
MarionP in reply to Patrickk

Biochemist? Let's try to get Sharon onto this one and see what she says.

JohnPepper
JohnPepper in reply to Patrickk

If the medical world was REALLY INTERESTED in finding a cure for Pd, or even a way of reversing the symptoms, then they would have investigated my story, for the fraction of the cost of finding a cure.

It would take no longer than 6 months to prove or disprove it.

I had been doing serious exercise for 28 years, one hour every day, except Sundays, and increasing it to 90 minutes for the last 2 years, during which my Pd symptoms had only progressed very slowly. My first symptom started in 1963 and I was only diagnosed in 1992. After increasing the time to 90 minutes, my symptoms got worse much quicker.

So, I stopped going to the gym and within 3 months I started doing the fast walking, and within 4 months my symptoms started to get better! Why?

My feeling about it is that although exercise is good treatment for Pd, the fast walking does something that all the other exercises I was doing, had not been able to do. Why did I start getting better when starting to do the fast walking? My take on it is that when we push ourselves to the limit and maintain the level as long as possible, our brains think we are in trouble and it goes into the 'Fight or Flight' mode, when It produces all forms of 'Growth Factors' to repair damage to cells. The name of the growth factor that repairs the 'Glial' cells is called GDNF.

Why does nobody ever talk about GDNF?

I'm very glad you have found a way to reverse your symptoms. I have read other anecdotal reports of exercise reversing symptoms and there is a clinical study showing it can [stop] progression [edit: almost stop; see clarification and link to study below]. You are right that doctors should tell their patients about exercise. Unfortunately, I also have noted examples of people with PD and MSA who exercise a lot and still have progression or even succumb to their illness - and of course there are athletes who develop PD and MSA. So while I think exercise will help most people, the extent to which it helps them will vary and some - possibly most - will still need medical interventions.

Interestingly enough, vaccines for PD (anti- alpha synuclein vaccines) are under development. They are meant to be therapeutic, though, and presumably would be given in early stages of disease, not prior to diagnosis.

It's great that you share your story and advocate for the value of exercise. It is possible, however, to do so without being so negative about the value of research.

ChrisWF
ChrisWF in reply to Rhyothemis

"there is a clinical study showing it can stop progression."

Really? Have you got a link?

Rhyothemis
Rhyothemis in reply to ChrisWF

Sorry, not quite stops, but slows down a lot:

"The mean change in Unified Parkinson’s Disease Rating Scale motor

score in the high-intensity group was 0.3 (95% CI, −1.7 to 2.3) compared

with 3.2 (95% CI, 1.4 to 5.1) in the usual care group (P = .03)."

jamanetwork.com/journals/ja...

The study was only over a 6 month period.

ChrisWF
ChrisWF in reply to Rhyothemis

Ah yes, thanks. I've seen that before and it's encouraging.

I can't find it right now, but I've seen images thst purport to represent the PD brain during exercise (against a PD brain normally and a normal brain). It's not an fMRI image or anything (I suspect an fMRI image was the inspiration), but assuming its legit, it shows that a whole load of bits in the PD brain (and not simply the SNPC) are much closer, during exercise, to a normal brain.

I suspect exercise (high intensity, at least) is doing a bunch of good stuff that isn't well understood yet.

MarionP
MarionP in reply to ChrisWF

Indeed that study is intriguing.

Hi Rhyoththemis.

I am certainly not against research. Where would we be without I?

Look at this:

foundmyfitness.com/episodes...

I can understand the medical profession and particularly Big Pharma not wanting to find cures for illnesses that don't kill us. They make fortunes on treatment for long periods of time, whereas a cure is only a once-off happening.

All the studies I have looked at, since diagnosis have been specifically aimed at finding something else that can be treated and which will probably lead to a better understanding of Pd.

I am amazed at the speed at which vaccines are being developed for the Covid-19 curse, but that is because it kills us! I would lay a bet that if Pd killed us there would have been a cure or a vaccine for it long ago.

"if PD killed us"

People die of PD. Please consider the feelings of people on this board who have lost loved ones to PD & those who know they are in dire straits. MSA and LBD definitely kill and if it weren't for PD research there would be no hope for people with MSA and LBD.

Your message would go a lot further if you changed your tone.

Sorry to have offended you. Death is not caused by Pd, we die WITH Pd.

I guess you have never heard of SUDPAR or aspiration pneumonia caused by PD. Your credibility decreases with every ignorant post you make.

That is an indirect cause of death. Sorry that I offend you!

ChrisWF
ChrisWF in reply to JohnPepper

"And who do you know has been told by his/her neuro has told them they can reverse their Pd by doing energetic exercise? "

No one, and thank goodness for that. There's so such thing as "reversing" PD. It is a term you made up to sell your book.

Exercise can:

- provide symptom relief;

- improve your general wellbeing:

- slow disease progression (probably).

It has not been shown to reverse or stop the course of the underlying disease.

"I have been able to reverse my Pd symptoms by doing fast walking. So I assume that my body must be producing more GDNF, hence the improvement in my condition. What else could cause my condition to improve?"

If we assume that you have PD, then the answer your final question is: how can we possibly know? The brain is a complicated thing and that you have concluded with no real evidence that fast walking produces GDNF which heals parts of the brain damaged by PD is solely a consequence of you looking for some science to fit your story.

I'll ask you this: if FW produces GDNF that repairs parts of the brain damaged by PD, why has literally no one else on earth been able to make it happen? Yes, you report that people give you good feedback but you still dont know of a single case that has stopped meds for an extended period post dx and you have never reported a long term follow up of someone whose progression has stopped. Surely if the FW>GDNF>Brain healing>PD reversed mechanism works as you say it does, other people will be able to replicate it???

These people that wrote you letters more than a decade ago: have you followed up with them to see how their PD is going? If not, why not?

You continue to sell your books and solicit donations on your website, and you mock commercial research into PD treatments, and you complain that the establishment wont take you seriously, yet you won't take simple steps to legitimise your research.

Some basic steps to improve your research:

- have a DAT scan. Surely the condition of your brain in this respect is of extreme interest to you? How can it not be?

- contact some of the people that have written to you and ask them some follow up questions. Be specific. It's not helpful for us to hear that you have turned someone's life around because it's an anecdote, not data. Gather some actual data.

Questions like:

What was your UDPRS score before you starting FW and what is it now?

What medications were you using And how much, and how much are you taking now?

Anyone that you have helped will be more than happy to respond to a survey about their condition.

If you want to be taken seriously, the first step is to act seriously. Continuing to spread anti pharma conspiracy theories and rant about how useless medication is just makes you look like a crazy uncle.

I know what your response will be: I'm too old and tired now. Well, none of what I have suggested will take any more energy than posting on healthunlocked.

GioCas
GioCas in reply to ChrisWF

it seems to me that you two are only looking for visibility for your purposes.

ChrisWF
ChrisWF in reply to GioCas

And it seems to me that you are a sandwich short of a picnic.

GioCas
GioCas in reply to ChrisWF

When you are done with the offenses and to constantly change the answers let me know.

ChrisWF
ChrisWF in reply to GioCas

You are the one that follows me around, weirdo.

GioCas
GioCas in reply to ChrisWF

visibility is your job isn't it? Isn't that why you and JP always argue about the same things? it seems so to me. Can I tell?

ChrisWF
ChrisWF in reply to GioCas

Another pointless argument started by you where you contribute absolutely nothing to the actual topic 🙄

GioCas
GioCas in reply to ChrisWF

You're wrong, what I think is true is therefore not useless.

JohnPepper
JohnPepper in reply to ChrisWF

There is too much to respond to in your uninformed list of accusations and conclusions.

If you want to read an article, one of many, that backs up my exercise claims then here it is:

foundmyfitness.com/episodes...

There are many more!

ChrisWF
ChrisWF in reply to JohnPepper

Nothing in that article supports any claims of yours that i have disputed.

She even goes to the trouble to explain why exercise won't replace medicine.

You have been shown this before, but notably, she references the study that says "80% to 85% and 60% to 65% exercise intensities are safe and feasible. Furthermore, high-intensity treadmill exercise is nonfutile; therefore, an efficacy trial is warranted for high- but not moderate-intensity exercise"

I.e It needs to be *high intensity*. That's running, not fast walking.

If you agree with her and the study she references, and you are genuinely interested in promoting the benefits of exercise, why don't you pivot to promoting what the studies demonstrate is effective rather than only "fast walking"?

JohnPepper
JohnPepper in reply to ChrisWF

To answer your last question first, Fast walking is 'High Intensity' exercise! I am unable to go any faster, when I walk, Fast walking is not natural, whereas running is. that, in my opinion puts the brain into 'Fight or Flight' mode, where it produces growth factors to repair possible injuries.

Why did I not get better when I was doing Treatdmill, cycling, step climbing, rowing and other weightbearing exercises for 90 minutes a day? Why did it only take 4 months for the Pd to start getting better? Stop closing your eyes to the FACTs and querying my motives and start to learn something different!

ChrisWF
ChrisWF in reply to JohnPepper

"Fast walking is not natural, whereas running is. that, in my opinion puts the brain into 'Fight or Flight' mode, where it produces growth factors to repair possible injuries."

This is just more stuff you have made up, but I'll play along: surely in fight or flight mode, you would run, and not walk.

The videos of people in Manhattan on September 11, 2001 didn't show anyone "fast walking", they were running.

"Why did I not get better when I was doing Treatdmill, cycling, step climbing, rowing and other weightbearing exercises for 90 minutes a day? Why did it only take 4 months for the Pd to start getting better? Stop closing your eyes to the FACTs and querying my motives and start to learn something different!"

I have no idea about what happened. The degree to which you are willing to change your story to make a point, and even more frequently change the topic when you dont have answers, makes it difficult to believe what you say. But the simplest explanation for pretty much everything is that you were misdiagnosed. In your very own book you acknowledge the 25% misdiagnosis rate yet refuse to consider it may have happened to you.

JohnPepper
JohnPepper in reply to ChrisWF

When you run you come out of the fight or flight mode!

I don't know what video you are talking about?

Be specific. What story have I changed?

ChrisWF
ChrisWF in reply to JohnPepper

"When you run you come out of the fight or flight mode!"

Okay John 😂

JohnPepper
JohnPepper in reply to ChrisWF

Walking fast is not natural, whereas running is!

ChrisWF
ChrisWF in reply to JohnPepper

You made up the "fight or flight" aspect. You literally made it up. NOTHING about choosing to fast walk has ANYTHING WHATSOEVER to do with the fight or flight response. Nothing.

Mimer
Mimer in reply to JohnPepper

John,

"Why did I not get better when I was doing Treatdmill, cycling, step climbing, rowing and other weightbearing exercises for 90 minutes a day? "

It is an interesting question indeed. One possible explaination might be that you had too little time for recovery. As I have understood it, you do fast walking every second day and the earlier excersise regimen almost daily.

Another possible explanation could be excersise intensity. I think you have mentioned that you in the beginning just did 20 minutes of fast walking and increased the time up to 1 hour as your capacity increased. Would you say that the fast walking is done with higher intensity than your previous excersice regimen?

A third factor could be speed of movement. Could it be that you make faster movements with fast walking than with the earlier excersice regimen? For example high cadance bicycling has been shown to be more effective compared to medium cadance at the same aerobic intensity.

A fourth factor, related to the third, could be that fast walking in itself is neuroplasticty training. Except the fast movements you also train e.g. balance in another way than you do in a stationary bicycle, step or rowing machine.

I have been thinking of the possibility that training of neuroplasticity might be more effective during e.g. the release of different growth factors. So I try to do them combined or add neuroplasticity training directly after cardio.

Another factor that also comes into play is your medication. Did you start your monotherapy with Selegeline at the same time as you started do fast walking?

JohnPepper
JohnPepper in reply to Mimer

Very interesting questions and possible answers. First, let me say that Every answer I personally came up with was my own guess as to what I think is happening and has happened to me, That is not scientific, but as nobody else appears to have done all this and as others have managed to do the same, it is the best answer so far,

The biggest difference I have experienced between high-intensity exercise on machines kin the gym and my fast walking is that with walking outdoors on uneven surfaces my brain is working very hard, whereas on a treadmill at maximum pace I am able to watch TV. That is how much brain work is needed on the treadmill. I would think the same goes for all the other machines.

I took Selegiline for at least three months before starting the fast walking.

ChrisWF
ChrisWF in reply to JohnPepper

"others have managed to do the same"

You can't point to anyone else that has done the same. This is the biggest issue with your supposed discovery. It hasn't been replicated.

JohnPepper
JohnPepper in reply to ChrisWF

Your ignorance and negative war on my efforts to change the Pd scene are laughable.

You have not read my books which contain letters from a number of people who have successfully followed my lead.

Whatever I tell everybody is trashed by you with your wild statements and accusations.

I am no longer going to answer your responses, as it is giving you some sort of credibility, which you do not have!

ChrisWF
ChrisWF in reply to JohnPepper

No one has successfully followed your lead in so far as coming off meds (by your own admission) or making long term changes to their disease progression. Yeah, you have some testimonials from people that report symptom relief or improved general wellbeing from walking. Big deal. I get the same from playing golf but I haven't had the hubris to write a book about it.

Hikoi
Hikoi in reply to Mimer

Mimer, you miss the most likely factor, John has Essential Tremor (a parkinsonism) not Parkinsons. That is why the medical profession do not take him seriously.

Mimer
Mimer in reply to ChrisWF

It is an interesting and promising study. But I would be careful to make the claim:

"80% to 85% and 60% to 65% exercise intensities are safe and feasible. Furthermore, high-intensity treadmill exercise is nonfutile; therefore, an efficacy trial is warranted for high- but not moderate-intensity exercise"

"I.e It needs to be *high intensity*. That's running, not fast walking."

The first reason is that they only compare 3 x 30 minutes at high intensity ~80% compared to 3 x 30 minutes of moderate ~60%. Anyone with some knowledge about aerobic exercise could easily see that the training effect of the first group is much higher than in the second. That was also shown in the study where VO2 max increased in the high-intensity group, but not in the moderate-intensity group. The moderate-intensity training should have been a minimum of 3 x 60 minutes to be comparable. To be able to say anything of the best way to train for PwP the VO2 max increase should have been equal in both groups. Otherwise, I would say it is more likely to be correct to claim that the more you increase your VO2 max, the more effective you would be stopping the progression of PD. Especially as the study itself showed a decline of VO2 max in the non-training reference group.

For example, most top aerobic top athletes spend over 80% of their training time in the moderate zone. Another thing to take into consideration is that a previous study referenced in this study indicate decreased progression at 70%.

Another factor is that speed of movements might be more important than the cardio training zone. It might be the fact that the high-intensity group did faster movements than the moderate-intensity group. Studies of high-cadence bicycling indicate that, which is also mentioned in the study as a possible cause of the result.

Exercise is important for the body and brain, especially for PwP. Every kind of exercise is better than none. We still know very little about how to best optimise the training regimen. Don't be afraid of high intensity or high-speed exercises, it may be the most beneficial to our current knowledge. But if you don't can or like, do low- or medium-intensity exercise. Anything is much better than nothing.

Mimer
Mimer in reply to ChrisWF

It is an interesting and promising study. But I would be careful to make the claim:

"80% to 85% and 60% to 65% exercise intensities are safe and feasible. Furthermore, high-intensity treadmill exercise is nonfutile; therefore, an efficacy trial is warranted for high- but not moderate-intensity exercise"

"I.e It needs to be *high intensity*. That's running, not fast walking."

The first reason is that they only compare 3 x 30 minutes at high intensity ~80% compared to 3 x 30 minutes of moderate ~60%. Anyone with some knowledge about aerobic exercise could easily see that the training effect of the first group is much higher than in the second. That was also shown in the study where VO2 max increased in the high-intensity group, but not in the moderate-intensity group. The moderate-intensity training should have been a minimum of 3 x 60 minutes to be comparable. To be able to say anything of the best way to train for PwP the VO2 max increase should have been equal in both groups. Otherwise, I would say it is more likely to be correct to claim that the more you increase your VO2 max, the more effective you would be stopping the progression of PD. Especially as the study itself showed a decline of VO2 max in the non-training reference group.

For example, most top aerobic top athletes spend over 80% of their training time in the moderate zone. Another thing to take into consideration is that a previous study referenced in this study indicate decreased progression at 70%.

Another factor is that speed of movements might be more important than the cardio training zone. It might be the fact that the high-intensity group did faster movements than the moderate-intensity group. Studies of high-cadence bicycling indicate that, which is also mentioned in the study as a possible cause of the result.

Exercise is important for the body and brain, especially for PwP. Every kind of exercise is better than none. We still know very little about how to best optimise the training regimen. Don't be afraid of high intensity or high-speed exercises, it may be the most beneficial to our current knowledge. But if you don't can or like, do low- or medium-intensity exercise. Anything is much better than nothing.

ChrisWF
ChrisWF in reply to Mimer

I was simply copying an extract from a paper that was referenced in an article that john linked to.

I don't claim to have all the answers. I suspect a variety of exercises have the potential to be beneficial and I have said this before.

It's John that claims that fast walking has a unique GDNF generating (which he says then heals dopaminergic neurons) effect that makes it superior to ALL other forms of exercise.

Mimer
Mimer in reply to ChrisWF

My intention was primarily to point out that this particular study doesn't have as solid proof to back up the advice that PwP should train at least at 80% of ones maximum heart rate as people who reference it (which I have seen more than once) or even the study itself claims.

My problem with that is that for a large portion of the PwP, it is extreme advice and hard to follow.

The study shows that if you are newly diagnosed and yet have not started to take any medications, running on a treadmill for half an hour at least 3 times per week on an average of 80% of your maximum heart rate would give you a fair chance to still have the same UDPRS score six months later without any medication.

Quite impressive and hope-giving in my opinion. The study also shows that if you spend the same amount of time on the treadmill with just around 60-65% intensity, you are not as likely to achieve the same result. But you still have a good chance to at least have a lower score compared to doing nothing.

I have no big issue myself with the advice John Pepper is giving. Especially when given to people with no exercise background or experience of neuroplasticity training. And I think his intentions are to help rather than to make any profit from it.

But I agree with your point that the theory to back it up is not always solid. Especially when it comes to claiming that one single part of his program is superior to all other possible options e.g. fast walking compared to all other types of exercise. I think he would gain avoiding that route.

With that said, I am giving it a try with Selegiline monotherapy myself and have chosen to wait with levodopa for now.

ChrisWF
ChrisWF in reply to Mimer

I'd have no problem with John if he simply stuck to the facts. I.e his story. What happened, what he did, when it all happened etc. People could then assess it and draw their own conclusions.

But his obsession with incorporating made up science as if it is fact is what puts many of us offside. Clearly, we could let it go, but he's also prone to latching on to new members here who aren't at all wise to his game, and some of us would prefer new members (new PWP) skip the time we all wasted sorting the wheat from the chaff.

I think you are being charitable about his motives. If helping people was really his top priority, I think he'd more open to promoting other forms of exercise that have been demonstrated (in a more structured setting that one man's anecdote) as beneficial in PD, and not merely his own brand.

There are ways of achieving personal gain that don't necessarily require financial profit.

I am talking about natural GDNF, not artificial GDNF. It is created in the brain and does not have to pass the BBB.

WE are able to measure the levels of GDNF in the train so why not measure my levels of GDNF before and after fast walking?

ChrisWF
ChrisWF in reply to JohnPepper

1. Stop walking for 3 months (or however long you say it takes for symptoms to return).

2. Have a DAT scan.

3. Recommence walking.

4. When you feel like you are back to where you were before you stopped, have another DAT scan.

5. Compare the DAT scans.

JohnPepper
JohnPepper in reply to ChrisWF

I said Start to return. They don't just suddenly return to where they were in 1994.

In 2013, Dr Norman Doidge came all the way from Toronto, in Canada, together with a film crew, to see me and make a movie. He then went around SA and we spoke to hundreds of people, many of whom had been shown by me how to walk normally, without me being present. He spoke to everybody about NEUROPLASTICITY.

He has written two books on the subject. He dedicated 70 odd pages in the second book on my story.

He did not do this because I am telling lies. He did it because he believes in what I am doing,

You obviously have a hidden agenda and your sole purpose is to discourage Pd patients from trying to do what I do. Are you proud of yourself?

ChrisWF
ChrisWF in reply to JohnPepper

You change the topic whenever you dont have answers.

My agenda is transparent. It's to prevent people from being misled. Sadly, you are one of the biggest offenders.

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