We waited ten years before two more tests were carried out. Why? Thise tests proved totally ineffective. Why? What is going on here?
Why is nobody wondering why GDNF has disa... - Cure Parkinson's
Why is nobody wondering why GDNF has disappeared off the face of the eath. The first trial in 1993 proved highly effective on all 7 people?
Written by
JohnPepper
To view profiles and participate in discussions please or .
84 Replies
•
I don't even know who they are or what they were doing? Could you explain? Thanks!
Blessings,
Carol
I presume you mean GDNF? Glial Derived Neurotrophic Factor! This is produced in the brain, when we do certain energetic exercise. In layman's language, it is a repair kit for Glial cells. Glail cells are brain cells, which produce dopamine! Not all of our glial cells work properly, hence the shortage of dopamine.
As many people wth Parkinson's disease (PWP's) are not either able or willing to do energetic exercise, Amgen, an American Pharmaceutical conmpany, produce synthetic GDNF, which was used in trial at Bristol University in 1993 on 7 subjects. The results after a year were very encouraging for all 7. This is all from memory and I apologise to anybody if the facts are in any way incorrect. If you Google GDNF you will get all the information.
Having had such good results, it is amazing that the only tests done on this same substance, took place in 2003, ten years later. Although they must have known how the GDNF was administered into the brains of the patients, the second and third tests proved totally useless. What happenned? Did they not know how the 1st test was carried out and improve upon it? Is an assumtion that, seeing that it took ten years to do the 2nd and 3rd tests, they were not all that keen on doing so? Perhaps it is not in the financial interests of the pharmaceutical industry to have a cure for Pd?
I, as a patient am amazed!
My Pd started in 1963. I was only diagnosed in 1992 and after taking an MAO-b inhibitor for ten years and continuing to do strenuous walking, for eight of those years, nobody would ever know that I still had Pd in 2003. Why? Why did it take so long to diagnose?
Today, twenty one years after diagnosis, at the age of 78, I am as fit as most people of my age, but still have Pd and still do my walking. Is anybody really interested? No!
Hi John
Phase one of any clinical trials is very very limited in size it's more to see if the drug is safe for human consumption and to look for any unwanted side effects. It may be that in the much larger studies phase 2 they found that GDNF overall did not produce the positive effect that they had hoped for and thus pulled it before phase 3 trials which is very common in the pharm industry or in the larger studies the drug produce unwanted side effects and pulled it..
Hi mistydog1
You may be right. On the other hand, you may be wrong! How are we mortals ever going to know the truth?
John
I question your claims. I thought GDNF was first identified in 1993 and the first Bristol trial was 2001.
Do you think that PD is just one condition or many different ones with the same symptoms . For instance can you say my Parkinsons is the same as yours?
Hi Hikoi
I seem to be out of step with your questions. I am sure that the Bristol trials took place in 1993.
I am not a medical person. I do a lot of work with Pd support groups and come across all kinds of people with many different types of symptoms.
I do not have a resting tremour, but I do have an essential tremour. I have found that I am unable to help those people with the resting tremour. I must assume that their Pd is therefore very different to mine,
I have been able to help a lot of people with walking problems, and freezing problems. I must therfore assume that we have something in common. However! Those who have a walking problem and a resting tremour I have not been able to help. How do you understand that?
I don't know what your symptoms are! How can we discuss this on this website?
John
The Bristol trial results were published in 2003, i can't find reference to the exact trial date. The trial was for about 18 months I think but certainly not 7 years.
I think Parkinsons is a number of conditions rather than one so i think different treatments will be required, just as we have different breast cancers all requiring slightly different treatments though they are all called breast cancer. My symptoms include resting tremor and walking problems.
Hi Hikoi, there were two trials around that time one in the US and one in the UK. The trials were pulled suddenly after a problem was discovered with the delivery system. Currently there is a trial in the UK and in the US another is about to start, they use different delivery systems, to my knowledge than the ones in 2003, and the one in the US is a Phase 1 trial. I have no idea what Phase the UK trial is. The original monkey trials may have commenced earlier than 2003, that in no way would necessarily have led to human trials unless there was some potential for improvement derived from them. 
Hi Lindylanker
I am very keen to hear a positive result to these trials. But! Why would anybody prefer to have a hole drilled into their head and have a catheter inserted into their brain and a pump installed in their chest in order to produce GDNF in their substantia nigra, when all they have to do is some regular meaningful exercise, which causes the btrain to produce the same GDNF in exactly the same spot?
John
hi im new at this im from sweden cant spell .sorry
i have had pd since 1996 my age is 59 60 this autum .now i have hard to walk in the mornings and on off symtoms the rest of the day .im curius of thes exercise you are talking about ( excuse my spelling hope you can understand at least some of it
pygg
Hi pygg
I admire people who can speak more than one language. I only speak English and my spelling is attrocious. Thank goodness for Spellcheck.
I can give you a long answer, which would take forever. go on the internet to my website reverseparkinsons.net to read all about what I have done. You can order my book on the website to get the full story or look in Amazon.com for the book 'Reverse Parkinson's Disease'.
You can also look on this website under GDNF, Exercise and MAO-b Inhibitors for some of the info.
John
;0) Thank you very mutch
Hi John hope its OK to but in but I'm seeing Dr on wed to consider using MOA-B inhibitor. At moment on sinemet. I've read your book but would you recommend taking MOA-B. Thanks trusam2913
I can only tell you what happened to me. I cannot give you medical advice! I took levodopa medication for the 1st 2 years after diagnosis. Then my neurologist took me off the levodopa and put me onto the MAO-b inhibitor, and at the same time I started to do the fast walking. Which one of those two actions was responsible for me getting better I cannot say.
When my neurologist took me off the levodopa he did say that the manufacturers of the MAO-b inhibitor claimed that it had been tested and it was found that it CAN SLOW DOWN the progression of Pd. I have seen this same information several times since then from other sources.
Very interesting John.
You stopped levadopa, when you stopped going to the gym and started walking and started selegiline around the same time.
Did walking improve your condition or just as likely was it the change of meds from ldopa to selegiline.
What a strange thing to stop levadopa if it really worked. Selegiline is used as an antidepressant.
Yes! I do believe that the walking and the selegiline were both responsible for my improved condition.
As the neurologist asked me If I wanted to make that change and the medical rep claimed that tests had shown that it could possibly slow down the progression of Pd. I obviously said YES!!!
There was a stage when it was thought selegiline may slow symptoms ( very difficult to prove with placebo effect). Then it lost favour because it caused heart disease now neither is clear. It makes my tremor much worse.
Have you tried the fast walking? It's the only wayI know of getting better!
Well i think its a load of codswollop that i can get better just by walking. But i tell you what, I will reconsider that when one person with the type of parkinsons i have gets better. i have a resting tremor and idiopathic pd. You can cut and paste your testimony for ever but it will never convince me, your condition is totally different from mine you have an action tremor and do not have idiopathic type of pd.
I didnt see any mention of fast walking in this recent comprehensive article. It looks at various types of exercise for pd. BETH FISHER is one of the authors.
exercisepd.com/uploads/3/5/...
You do not believe anything. That is your choice. Exercise of any sort can only make you more healthy. And if you are as lucky as I was, you may also get better. Who knows? It is a win-win situation.
I will email you the name of another man who has got better. He is a retired psychologist in the USA and he is keen to talk to anybody wanting to help themselves.
I find it offensive that you say I dont believe anything just because i dont believe your method would work to reverse my pd symptoms. I would consider myself foolish and guillable if i believed you (or anyone elses claim) without convincing evidence.
Of course exercise is good, i have NEVER said it was not.
I presume the psychiatrist is the one in Colorado who made about 2 posts here then disappeared. I dont believe he is better. He would be keen to talk as his business is mentoring people with pd and it doesnt come cheap.
I 'm sorry that I did not add "that I say". If you consider that it costs you nothing to do the walking and it will do you good, without any "Proof", then your decision not to do so is misguided.
So i must walk as you instruct or I am misguided? Really ?
Who said I am guiding you? I just tell everybody my story and how I got to where I am and leave it to them to decide if they want to try it. What have they got to lose? They have everything to gain!
I dont understand this answer. It does not relate to what I wrote.
I was referring to the word, "Misguided".
• in reply toJohnPepper
"I have found that I am unable to help those people with the resting tremour."
I have resting tremor. Tremor dominant Parkinson's. So do I take from your statement that my fast walking will not help?
JohnPepper• in reply to
Hi RoyProp. If you are able to reverse your symptoms, via the Fast Walking or any other exercise you think will do the job, then the tremors should reduce a well.
I have resting tremor also, if unmedicated. Resting tremor is typical of Parkinson's and essential tremor is a different indication entirely.
Hi Park_Bear and Royprop. I have just come back home after a 10 week tour of the USA and Canada. On that tour I was able to show a fairly large number of people with serious walking problems, 'How to use their conscious brain to control their movements'. This sounds like pie in the sky, but it is very simple and it really works.
Why am I telling you this? Well! We would all like to get better, as I have. But how can we get better by doing Fast Walking, if we are unable to walk properly? That problem is easily solved. But the next problem is getting them, and everybody else to give the Fast Walking a chance.
What have we all got to lose by starting to do Fast Walking? Absolutely nothing to lose and everything to gain. Your overall health will improve, you will stand a good chance of avoiding such problems as diabetes, heart and lung problems, bone density problems and many others.
So, what have we all got to lose by slowly starting to do Fast Walking?
That's great, John, and blessings for the good work you do.
That said, fact is that resting tremor is the trademark symptom of Parkinson's. That's why Parkinson himself called it the "shaking palsy".
Hi Park_Bear. Have you noticed that when you clench your fist the tremor stops? If you extend your fingers as far open as you can the tremor also stops. Therefore, if you hold our hand against you thigh with the fingers splayed wide open you should be able to hide the tremor quite successfully.
Thanks for your thoughts. I do not have tremor at this point for the most part, thanks to meds, NAC and glutathione.
Hi park_bear. Are you going to wait until those meds no longer work before you decide to try to reverse your symptoms?
You have no idea who you are talking to. Come on over to my place and we'll see if you can keep up with me rock scrambling.
Not to mention you just said you were unable to help people with resting tremor. You change your mind all of a sudden?
You are talking about FITNESS, while I am talking about REVERSING PD SYMPTOMS! Not all exercise reverses Pd symptoms.
I don't think I said am unable to help people with resting tremor I say that f you reverse your symptoms the tremors will get better.
Take at look near the top of this thread, John:
" I have found that I am unable to help those people with the resting tremour. "
Hi park_bear. I assume you mean this item "I have resting tremor also, if unmedicated. Resting tremor is typical of Parkinson's and essential tremor is a different indication entirely."
Essential tremor was the term used by my neurologist, when he diagnosed my PD. It is also called by other names. It is very common in people suffering with Pd and is not exclusive.
No, I was referring to what YOU, JOHN PEPPER WROTE. GO TO THE TOP OF THE PAGE AND READ DOWN FROM THERE:
"JohnPepper
Hi Hikoi
I do not have a resting tremour, but I do have an essential tremour. I have found that I am unable to help those people with the resting tremour. I must assume that their Pd is therefore very different to mine"
YOU WROTE THAT.
YOU WROTE: " I am unable to help those people with the resting tremour."
GET IT?
Hi park_bear. Yes I am at long last with you. It took me 4 years before most of my symptoms disappeared. It takes a few minutes to overcome the bad walking.
As I said in my last post, "I am unable to help those people with the resting tremor." I meant immediately. Whether those people I help to walk properly do go on to do the fast walking and overcome many of their symptoms or not, I don't know. My guess is that all the visible symptoms get better with the walking, as mine have. I assume that the area of my brain that has been improved is the same area that causes the resting tremor, but because I don't have a resting tremor I would not know that.
Sorry for the confusion.
Right.
Here's another thing you need to be sorry for:
"Hi park_bear. Are you going to wait until those meds no longer work before you decide to try to reverse your symptoms?"
Independent observers have confirmed my condition has improved with my current regimen. Moreover, here is a controlled study that demonstrates the same regimen improves the underlying condition in Parkinson's patients in general:
journals.plos.org/plosone/a...
It is inappropriate and reprehensible for you to say what you said, to me or any other Parkinson's patient, under any circumstance. The reason for that is the placebo response is very powerful in Parkinson's. Positive expectations regarding the outcome of treatment cause the release of dopamine, which is not just feel good, but *therapeutic* in PD. Likewise making negative suggestions regarding a person's treatment is bound to have the opposite effect.
By the way, that same effect comes into play when someone who might be regarded as a miracle worker arrives in town. The positive effects you see arising from your efforts may very well be due to the placebo effect. All the more so because you admit you don't really know if your method helps Parkinson's patients long term or not.
So please recognize that your methods are not the only potentially effective way to improve the underlying condition, especially since NAC has been proven in a *placebo-controlled* trial.
Oops! I have no desire whatsoever to make you feel that I am being derogatory about whatever you are doing to deal with your problems. I apologize if what I said hurt your feelings. That is not my objective.
You are free to do whatever you want to fight your Pd and I genuinely wish you luck!
I don't know for certain that what I am doing has had any long-lasting effect of the cause of my Pd. I do know that when I stop doing the walking my Pd soon starts to com back again. That is not hard to understand because I have done nothig to stop Pd attacking my brain. I have obviously increased the supply of dopamine the substantia nigra, and when I stop doing the walking I would expect the Pd to take over again. It has never got as bad as it was in 1994, when it was at its worst.
I only meant to ask the question, "have you tried Fast Walking?'
It takes six weeks for your symptoms to reappear John. It takes 2 hrs for many of us.
You have not read my book. Let me respond to your statement.
In the beginning, it took six weeks of no exercise before I needed to go back onto the medication.
After 8 years, I was able to come off the medication, as long as I continue to walk.
There has been one instance since I came off the medication, where I was injured for 5 and a half months, and I still did not need to go back onto the medication.
What medication did you have to go back on John?
Eldepryl
What strength did you take John and is it the same for others?
I presume you took it because symptoms had returned, i wonder what those symptoms were.
There is only one strength and patients have to take 1 tablet twice a day.
From memory, my coordination, tremors , insomnia, constipation, and speech all got worse.
A link to a YouTube clip of the before and after results of the Bristol study.
youtube.com/watch?v=gnDHMve...
If there was even a ten percent chance of one of us responding this well to GDNF, would we not want the option?
iive seen this to ;0)
Hi reveret. In that study the GDNF was pumped directly into the brain, which was done by major invasive brain surgery. Your brain produces GDNF naturally, so would it not be easier and a hell of a lot cheaper to start doing fast walking in order to produce more GDNF and reverse the symptoms?
I am interested. What type of exercises did you do and for how long i.e. half hour, one hour per day?
Hi Cactus1
Walking has been found to be the most effective way for us Pd sufferers. By walking, I don't mean taking the dog for a stroll or ambling along the street with headphones on, listening to music.
I am not a doctor, I am a Pd patient! From what I have gathered over the years, when our brain thinks we are in danger, it produces, what we non-medical people call, a growth factor, all over the body, including the brain. This growth factor helps to repair damaged cells, As we have damaged brain cells, which are the cause of our Pd, that growth factor, called GDNF (Glial Derived Neurotrophic Factor) repairs the damaged Glial cells, hence we get better.
We have all heard of the 'Fight or Flight' syndrome. Well, if we did not manage to repair damaged cells, we would not have lasted for so long as a species.
I walk as hard as I can for 1 hour, every second day. It is dangerous for us to execise every day, as our muscles need one day to recover from any energetic exercise.
I hope this helps you!
John
No proof walking is best. Only belief.
That's why I am trying to motivate a study to get the proof.
Hello John,
An apparent ten year delay between trials is a long time to wait especially if you have Parkinson's and had your hopes raised by the initial success. Could it be that pharmaceutical companies have different priorities?
Norton
Yes! It does appear that way. It is not in their interest to find a cure for any health problem. That is not illegal! As some Pd Associations get financial backing from the Pharma industry, does this affect what we are doing to find a cure for Pd?
You could also ask does pharma backing affect trial results?
Hi Hikoi
I don't know, but I would assume so! They are in business to make money. They are not a charity! We can expect them to do anything to sell their products, because that is what business people do! It is therefore not in their interests to find cures for any illnesses. Why should they?
We, on the other hand, have every reason to find a cure and we should back any organisation, which is not linked to Pharma, and give them our full support.
I am going to be controversial here. My local National Parkinson's Association receives considerable finacial support for their work, from Pharma. I have to ask, bearing in mind what I have already said about Pharma, "Are these Associations able to further our Cause?"
I do not want to embarrass them with this question but it stands to reason that if a lot of their funding comes from Pharma, how independent are they?
John
John i asked the question because of your comment elsewhere which was "The research I have seen, produced by Teva does show that it (azilect) can slow down the progression."
This research was carried out by the drug company who actually make the drug, so do you trust the results or do you think "they could do anything to sell their product"?
I am sure you are motivated by a desire to help, it is your facts I am questioning not your motivation.
Hi Hikoi
Although I have had Pd for many years, I am new at this Forum debate business. I checked back on my original information, and you are correct. It was done by Teva and there is no approval mentioned by FDA. Put it doen to my lack of knowledge on these things.
We seem to be on a hiding to nothng here. If Pharma don't want us to get a cure they, could pretty well achieve their goals very easily!
John
John
There has been some recent studies, here is an overview, a little out of date now. The cogane study results are published, they were disappointing, the study in Bristol has begun.
I have read this report on pdpipeline.org/2011/GDN and am impressed by certain company's determination to follow this through, but whay has it taken over twenty years?
On the other hand, why are Parkinson's patients not willing to start walking, in order to produce this magic GDNF inside their own brain, as I have been able to do, very successfully? The only cost involved has been the purchase of several pairs of suitable walking shoes. That is not much, when compared to the cost of having catheter placed inside the brain and a pump inserted into the chest.
Hi John, I believe that it took time for the original company to disengage and new players to come on bord. As it was the delivery mechanism that failed the trialing and research had to go back to the beginning, and a new delivery mechanism had to be developed. All this has taken time, and many in the PD community are now watching for results of the new trials which hopefully at some point will deliver a treatment that works for some of us.
Your walking information is very interesting, I was a great walker before PD, and even afterwards loved it, but more recently, now close to twenty years after very first symptoms, and 10 after diagnosis am have a lot of problems walking, that only really appeared around 4 years ago, and are also probably related to B12 deficiency. Which means huge fatigue, after only very short distances. I have been unable to unravel the two conditions, and attempts to do a little and often have not helped. I was never a fast walker (short leg syndrome!) but had stamina. Will watch your posts on this, as I need to make up some of the lost ground. I am not sure that walking is making GDNF though, there is a very complex set of neurochemical reactions going on, and it maybe that some people are more responsive to different chemicals than others. I do, on the other hand, believe in neuroplasticity and that it can be exploited so that we can function better.
Hi Lindylanker
It is difficult to tell others what to do. Especially as a non-medical person. I can only tell you what I was able to do.
I was lucky, in that I was in the habit of doing regular energetic exercise when I was diagnosed, because of a serious back problem going back to 1961.
I got into the habit of doing serious exercise when I found that it was the only way I could function properly. When I stopped doing exercise, my back problems got worse. I am lazy! I don't enjoy exercise! However! I had to strengthen my core muscles, in order to support my back better.
After my diagnosis with Pd, I increased my exercise to 90 minutes per day in the gym, doing aerobic exercises for an hour and muscle toning exercises for 30 minutes. That did me more harm than good. So much so, that two years after diagbosis, my symptoms were worse than at the time of diagnosis. What is new? You may well ask. I was persuaded to join my wife's walking group, instead of going to the gym. As the gym was not working, I reluctantly agreed to joining her group. Guss what? After only four months, my symptoms started to improve! I started to get better! I was only taking Eldepryl and doing exercise and I was getting better! Wow!
This changed my whole attitude to a more positive one! I slowly increased my walking time from twenty minutes every second day to one hour, every second day. That is the optimal time for energetic walking.
If you want to start walking, in order to produce GDNF inside the brain, you have to go at it very slowly. Begin with ten minutes at your maximum effort level, minus a little bit. Don't walk so fast that you can't talk properly. Walk at a level that you are still able to talk, but only just.
Only walk every second day. Muscles need a day to recover from the exercise.
Increase the time by no more than 5 minutes, every second week, until you reach one hour. Then work on increasing your speed, Bingo! You will then be producing GDNF in your brain at a sufficient rate to improve your symptoms.
I repeat! I am not a doctor! I am only telling you what I did!
I have not taken any Pd medication for the past ten years and am now 78 years of age and living a normal life.
What are you waiting for?
John
there i go this was the information i needed bye for now i m out walking ;0)
Hi John,
decided to stay awake and follow through some of your blog contributions. Having a medical degree, is not extremely helpful for doctors with PD as the general concepts can be understood by most lay people.
Your knowledge and experience are an inspiration to all of us!!!
Michael J Fox foundation is well known in the US for encouraging and supporting independent studies.
Using a recumbent bike may be of use to those who have difficulty walking..
Finally,the Parkinson's disease Association
has available on its website both theoretical as well as practical discussions on PD which are available to anyone who registers and is free of charge,Their website is
I have always said the reason there will never be cures for any major disease is that the pharmaceutical companies would lose hundreds of millions.
After saying that I walked regularly for years but now although the mind is willing the body is weak.
I have to find less strenuous pastimes.
How old are you? When you say walking, do you mean strolling or pushing it? If you push it, you actually build muscle and are able to overcome the tendency to get weaker with age! Try to push yourself through that barrier. Remember to talk to your doctor to see that you are fit enough to exercise hard. Good luck!
I do lots of walking and qi gong every day and try to keep moving and shaking, bouncing to keep the body cells and circulation going;;;;fine on some things but finger and finer movements have not improved -i do hand exercises;;;??? im 67.
Hilary. You must not exercise the same muscle groups every day! They must have time to recover from the exercise. One day is sufficient to recover properly and grow stronger. Don't overdo it. I made the mistake of going to the gym for 90 minutes six days of the week. That resulted in my Pd getting worse and not better. When I started walking hard every second day, I started to reverse many of my Pd symptoms. After eight years, nobody would ever have known that I still had Pd. That was ten years ago and I am still walking every second day and am now 78 years old and doing well.
I copied this from the Web this morning - it seems there is still work to do AND the effect of the GDNF seems to wane over time - that's a layman's reading of the following mind you
How it Works:
GDNF works so well because it is a biological molecule designed to enable neuron survival. As all of the neurotrophic factors, GDNF is responsible for the growth and survival of neurons in the brain. In fact, that is what "neurotrophic" means; it is derived from the Greek "neuro" meaning nerve, and "troph", meaning nourish. GDNF is a natural substance used during development and to maintain adult neurons. Neurotrophic factors such as GDNF offer exciting possibilities to the field of nerve regrowth; they have actually been able to cause damaged neurons to regrow their processes in test tubes. The research on this kind of chemical for use in Parkinson's disease has a potential for substantially reducing the suffering of patients.
Unfortunately, GDNF can cause problems in cells when administered alone, as a pure drug. However, research has found GDNF to be most effective when it is administered directly to the substantia nigra in the brain (the dopamine producing part of the brain) inside of a virus. More specifically, a viral vector was created for GDNF (basically, GDNF-synthesizing genetic material was placed in a virus), injected directly into the brain, and the virus infects cells in the substantia nigra and continuously produces GDNF growth factor. This is why it is considered gene therapy; the actual DNA of the cells in the brain changes.
The virus used in many recent studies is an adeno-virus, which is an adenosine antagonist. In the research, rats are injected with both the GDNF-producing virus and with fluorogold (for retrograde labeling of metabolic function in the brain), and then allowed to recover. Some cells are then tested in order to make sure the infection and production of GDNF has occurred. Seven days later, the rats are given either MPTP (1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine, a street drug that induces Parkinsonian symptoms), or 6-OHDA (striatal 6-hydroxydopamine, which also causes progressively degenerating Parkinson's symptoms). The rats are then killed, and compared to both a group of rats infected with a mutant form of GDNF and to a control group. The human form of GDNF-infected rats turned out to have the most promising results: significantly more dopamine-producing cells were found in the human-GDNF group (many cells were prevented from dying), and the tissue where the human-GDNF adenovirus was injected were still producing the growth factor. In this way, the GDNF factor protects neurons from dying, and may allow Parkinson's patients hope if their symptoms are diagnosed early on in the onset of the disease
Our bodies produce GDNF, when we do energetic exercise, like walking. We therefore do not need to take artificial GDNF, all we have to do is walk regularly.
What type of exercise is best, in order to produce GDNF in the brain? Fast walking is the answer to that question. How often? Three times a week! Why not every day? If we don't allow our muscles to rest after strenuous exercise they tend to eat themselves up, and thus become smaller and less efficient. If we allow them to rest for a day, they tend to grow larger and more efficient.
Hello John,
All this GDNF production under your own effort is interesting and is clearly an alternative to increasing the amounts of medication taken as your body gets used to doses. BTW, I was reading a book called ' Reversing Parkinson's Disease' recently by someone of the same name as you. May I ask, are you the same John Pepper?
Yes! I think you have used the wrong title. The only book I have written, which is available on the internet is "Reverse Parkinson's Disease'.
John, Before i was diagnosed with Parkinson's I walked on an average of 5 miles usually 4-5 times a week. I was able to continue walking for about 5 years after the diagnoses, but now I can hardly walk at all. I've had PD for almost 16 years. Any suggestions how to get started again. Thanks.
Hi Maryalice
I am not a doctor, nor a trained health specialist; I am only another Pd sufferer. However, I have learned, through hard experience that too much exercise is worse than not enough! After I was dagnosed in 1992, I decided to go to the gym for 90 minutes a day, six days of the week. My condition continued to get worse! Then I joined an organisation called, 'Run/Walk for LIFE'. They would not allow me to walk for more than 15 minutes, three times a week. After two weeks, they allowed me to walk for another five minutes. Everey second week, after that, they allowed me to walk another five minutes, until I was walking for one hour. Then I stayed at that level, but continued to walk further and further in that hour.
The muscles have to have time to recover, otherwise they eat themselves up,
I only ever took a single medication, namely Eldepryl, which is an MAO-b inhibitor. That, and the walking, have helped me to reverse my Pd symptoms, I think!
John
Thank you so much for sharing your information. I will try to start walking again and take it very slow. I'll be fortunate to be able to walk for 5 minutes, but I'll give it a try. Blessings.
Hi maryalice
Don't be put off by only being able to walk for only five minutes!
I want to remind you that I am not a medically trained person. I can only tell you what has happened to me!
Remember the rules: Walking only helps if we walk as fast as we are able, while not overdoing it; Establish the maximum time you are able to keep up that level of walking; Don't start off doing more than 10 minutes, if you are not very fit; Only walk EVERY SECOND DAY; increase the time by no more than five minutes, every second week; Don't increase by five minutes, if you feel you can't do it, increase by much less; If you have to stop walking for more than two weeks, because of other health problems, then go back to a much lower level and start again from there.
Good luck!
John
Hi maryalice
I am going over this old blog and wondered how you are doing? Are you still walking and do you feel any better?
Kind regards
John
Not what you're looking for?
You may also like...
What's with this 'leaning thing,' that has plagued me in two areas of my life. First there was my leaning to the left on my computer chair.
A few times i leaned so far that my forehead had a rugburn on it. And then there was yesterday; I...
PM WEBINAR 4 "GUT FEELINGS"
PARKINSON'S MOVEMENT
WEBINAR 4
GUT FEELINGS
What does a movement disorder have to do with...
A flying SPARK?
Full day clinic visit today. 11 blood samples, all the paper and physical tests, a urine test I...
A better way of testing
I just went through off-on testing at Mohammad Ali research center in Phoenix. It is an impressive...
Gut bacteria tests are BOGUS according to major review - experts say the $200 tests are 'exploiting customers' and give 'misleading' results
Blood Tests
Specific gut bacteria may reduce severity of Parkinson's disease 
Not parkinsons, but what?
The truth about Flu Shots 
