I am the only Pd patient, that I know of, who has managed to reverse many of his/her movement symptoms. I am also the only patient, that I know of, who has not had to take any Pd medication anymore. For the past 11 years I have not needed to take any medication for my Pd. I had been taking Eldepryl for over 10 years, up to 2002. Other than taking that medication, I gave up my highly stressful job, immediately after diagnosis. At that time, I was feeling very sorry for myself and was beginning to enjoy the sympathy and support I was getting from my family and friends. That was NOT a good thing! There has to be a time for adjustment to our new situation, but feeling sorry for ourselves is not a good idea.
There has to be something to my unusual experience, that is worth taking note! Firstly, I only took one type of medication, for those ten years. That was unusual! I don't know of anybody else who was prescribed only one medication for ten years. Secondly, I had been doing regular energetic exercise, both in the gym and on the road for over twenty years, before being diagnosed, although my first symptom began in 1963, 29 years before diagnosis. Both of these factors could have a very significant bearing on my improved health. Neurologists appear to be more inclined to prescribe levodopa medication than MAO-b inhibitors, of which eldepryl is one. However, for the first two years, after diagnosis, my condition appeared to still be getting worse. That situation changed, when I gave up going to the gym and started to do regular hard walking, on the road. I am therefore quite convinced that the right kind of exercise, combined with the right kind of medication and the lack of harmful stress, is the right formula for reversing Pd.
You have to BELIEVE that this is possible, before you can commit yourself to doing lots of exercise. I don't look down on those who are not prepared to try the exercise, with total commitment. It is not easy! YOU HAVE TO BELIEVE IN WHAT YOU ARE DOING!
Two years after I had been diagnosed, when I had been taking eldepryl for those two years, my condition had continued to still get worse! I then started walking, as fast as I could, initially for only 20 minutes. Every second week I increased the time by an additional 5 minutes. After only 4 months, when I reached one hour per walking session, my times for walking each kilometre had come down from well over 10 minutes to well under 9 minutes.
That was the first time in many years that anything had IMPROVED in my life.
You cannot believe what this did for me!
4 years later, friends I had not seen for a long time, told me I was LOOKING SO WELL! They made me aware, for the first time that I was, in fact, looking a lot better. My family had not noticed it, and neither had I. We saw each other almost every day, and you don't notice slow change taking place. But others, who don't see you that often, do notice. They thought that I had been telling lies! They thought that I had told everybody I had Pd, in order to get rid of all my responsibilities at work! Giving up my job was the best thing I ever did. It got rid of a great deal of stress in my life, and that alone must have helped with the Pd.
There is so much to learn from what happened to me, but it can only make sense if you can read the whole story.
I can thank Norton for helping me to get back onto the HU website and to be able to tell people my GOOD NEWS!
John
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i have psp and was always v keen on exercise = swimming / walking/ aerobics a the gym etc
now i can no longer swim and the changing rooms are too dangerous as my balance dis v e poor too and i should have multiple falls there
but i continue to do tai chi once a week at a va good class and at PARKINSON'S MEETINGS locally i do some good exercises with people who are pwp and non=parkinsons alike
but i cannot walk anywhere on my own now as my balance is so poor and once i start falling i cannot stop and so i am limited
i agree with you that exercise is v beneficial whatever type one undertakes and perhaps explains why i am still here upright most of the time as i have always been keen to keep fit and healthy
lol Jill
i am v pleased that your walking is so good and that tit has lkept your symptoms at bay
Hi Jillian. I do understand that many people are unable to walk, mainly because of balance problems, and I commiserate with them. I am trying to reach the people who are newly diagnosed, hoping to persuade them to do exercise, so that they never get to the point where you now are!
There is another aspect associated with balance problems. The problem is caused by Pd, and until the symptoms of Pd can be reversed, that aspect cannot be overcome. The other aspect is muscular strength, or rather the lack of it. We can always exercise our legs and arms, while sitting or laying down. I would highly recommend that you try doing this. Your physiotherapist or health professional can advise you about what those exercises are. When muscles are strong they react much quicker to messages from the brain, which prevent us from falling. Talk to your health professionals about this. DON'T GIVE UP!
Hi Anthonyian. I cannot answer your question, as a layman. I would certainly try doing so because no Pd medication has any effect on the progression of Pd. So whether you take it or not, the Pd still continues to get worse at the same rate. At least, that is what I am led to believe. There are no scientific double-blind tests to prove otherwise.
If you want to try weaning yourself off medication try doing it for one medication only, to start off with and cut it down by a half tablet a day for a whole week. See what the effect of doing that is. Then if you have no ill effect then try taking off the other half tablet for a week and see what effect that has. Many people have found that their condition improved when they did that.
Then try reducing the other medication by a half tablet in the same way. Let your body tell you what happens.
If you are doing fast walking, which can and does increase the amount of dopamine in the brain, while you are reducing the medication, you may well find that it all works very well.
Let your body tell you what is right and what is wrong.
Hola John: I was diagnoses with Parkinson 2 years ago and all the time some hours a day feel very bad. I have therapy for balance, yoga and since a month ago, swiming.
I swim all my life and stop to do 15 years ago I can't remember why. But now only with a month my parkinson has different condition. Really the exercise is an excelent option for PD
Hi gmunsot. Whatever exercise you are able to do, then do it. Don't do the same exercise every day, because it damages the muscles. Do it every second day. If you are able to walk, then do so!
Yes research at NYU many clinical trials show that exercise is the ONLY thing shown to be neuroprotective, e.g, slow the progression of PD. No drug, no procedure. I'm sure the literature is available. I have somewhere. Non-PD people needed for more clinical trials. Be a PD advocate.
Hi PatV. If we are convinced, and I am not, that medication is the best way of dealing with Pd, then by all means, take the risks involved, and volunteer for clinical trials. I would like to be in the position to do trials on exactly what I have done to get the results I have. That would be a very interesting trial. It will not work for lots of people but it will work for some, and that would be very worthwhile!
walking? not diet? not cinnamon? I am not surprised "...exercise is the ONLY thing shown to be neuroprotective, e.g, slow the progression of PD. No drug, no procedure."
Hi RoyProp. You're right on the button. But as much as I am against taking mind-altering drugs, which do nothing to slow down the progression of Pd, I must say that the only type of drug that does help Pd is any of the MAO-b inhibitors, such as Eldepryl (Selegiline), Azilect (Rasagiline) and Parkilyne (Selegiline) generic. They help because they enable you to make use of more of the dopamine you already have in your brain and avoid having to take levodopa, which does nasty things to you.
Not just any type of exercise helps to reverse Parkinson's but fast walking is the only one that has been tested to reverse Pd.
There is more to all of this: We need to stimulate our brains by doing brain exercises and we must adopt a positive attitude and avoid harmful stress.
I am not trying to sell my book but there is no quicker way of learning how to go about reversing your Pd.
If you are serious about wanting to reverse your Pd then go to my website - reverseparkinsons.net - and see all the information I have put on there for your benefit and if you are serious about your Pd then order the book and I will personally send it to you immediately. I will also personally answer any questions you may have about your Pd.
I am not a doctor but I have had Pd for a long time and have been able to stop taking any form of Pd medication for the past twelve years and nobody would ever know that I still have Pd. I am now 80 years of age and am able to live a good healthy life now.
I am really pleased to see your posts today. It is such a relief to read some positive news from someone with PD.
I was initially diagnosed last November and had confirmation in January this year. I have read lots of posts etc and decided to make some changes in my life to help myself.
I no longer have such a stressful job ( I was a freelance IT contractor for 17 years ) - now I work as an employee from home. I don't think it is a coincidence that last year I had an incredibly stressful time at work and also started to display PD symptoms with balance problems etc.
I bought myself an electric mountain bike which means that I still have to pedal but I can go further and do more off-road stuff. I have started going to a weekly drop-in Dru Yoga class.
My PD has been steadily improving over the last few months to the point where I find myself forgetting that I have it sometimes. I still take 1mg Azilect every day which probably helps too.
Like gmunsot above I used to do a lot of rigorous exercise but have gradually stopped most of it apart from walking and that was infrequent. My observations on exercising for the first time has been as follows - right afterwards I was left completely knackered (Yoga makes me feel a bit dizzy/nauseous because of lying down), however the next day I found that my balance was almost completely back to normal, this lasted for a few days afterwards before gradually wearing off. This happened with both the yoga and the cycling first time.
My balance has been improving all the time.
The only other strategy which I would like to pursue is to see what effect CBDs from Medical Marijuana have. From what you are saying though it sounds like the exercise should be enough.
Hi Steve. Try to include ENERGETIC WALKING in your routine, but remember, you must never exercise the same set of muscles every day, they need time to recover, otherwise you pick up injuries and the muscles eat themselves up.
Good Morning, Exercise and meds. have kept me going for 7 years. I belong to a gym devoted to PD and we work on the quality of life We are engaged in a boxing-exercise program and I am there 3 days per week.The exercise and the friendship among other PD cannot be measured.We believe in our program and can see the results in others PLEASE consider exercise it really helps We call our program Rock Steady Boxing
Up until 3 months ago I was in total agreement about exercise and PD. However, within the last three months my husband, 60 this year and diagnosed over 11 years ago) has had a dramatic downturn, especially cognitively. Now, any physical exertion absolutely exhausts him, causing an increase in his cognitive problems (confusion, anxiety, hallucinations, violently vivid dreams, etc.). He finds this frustrating and distressing, gets even more tired and the vicious cycle continues.
Enjoy what you can, while you can and while it is beneficial.
Hi Ceebs. As you may know, I am not a doctor, only a Pd patient who has got better. I am aware that we are not all alike and therefore what works for me does not necessarily work for everybody. I am aiming at newly diagnosed patients who are not hooked on Pd drugs yet.
Did anything happen three months ago? Did his medication change? Did he have a fall? Was there something that could have brought about this change?
Thank you for taking the time to reply. I do fully appreciate all that you say and wish you continued good health.
I do believe there was a reason for my husband's catastrophic deterioration but cannot/dare not say more for the time being. No time to write more as my hallucinatory self apparently wants to talk to me. Life is definitely not dull!
Thanks Ceebs. I like your sense of humour. I would be very interested if, one day, you could tell me more about it. If you want to talk to me privately, you may email me at johnpepper@telkomsa.net.
Hi Powerfemale. Walking has been proven, in genuine scientific studies to be the best way of producing GDNF (Glial Derived Neurotrophic Factor) in the brain. This repairs the damaged brain cells and reverses the Pd symptoms. It does not cure Pd, but it can and does reverse it.
Hi John, my neurologist told me exercise was the best thing I could do for PD. I was having some balance problems and had a few falls but have gotten better with the help of a physical therapist. I wanted to try and ride my bike again, but my husband is worried about falls and wants me to stay on a stationary bike. I hope to get to riding back outdoors though. I appreciate your positive energy and motivation. Thx D
I know that your question is directed towards John, but if neither of you mind, I'll chip in with this point of view.
I have a friend who has DBS (clearly you have not! but stay with me) and wanted to go cycling. I went with him to buy the bike and he looked quite safe cycling around a large, empty, car park. So, he said "I'll take the bike please."
Next day we went for a cycle ride into town and he fell off his bike, twice with the bike finishing on top of him both times. Luckily, he was not run over by a car (what was I doing letting him get on his bike again after the first fall?)
I told him that was it and I would only accompany him and his bike for short rides along a promenade where there were no cars, but there were pedestrians. In the six times we have ridden there, he has fallen off his bike two more times. His steering of the bike was erratic to say the least!
Quite why you fall or the nature of them, you don't say. Presumably, it's not through 'blacking out', otherwise that is a complete 'no,no'. If you are insistent on cycling and believe you will not fall off your bike, why not play safe and get and electric trike. In the UK they cost about £1200 new and have a large shopping basket at the back of them. It could give you a new lease of life. You do not always have to cycle with the 'power on', so you can still get fit under pedal power.
I fully understand your husband's concerns. Why not get your exercise by walking briskly in the countryside amongst nature? As a human, it's your natural 'home'.
Whatever you do, I hope you enjoy yourself. You sound like a spirited lady.
Thank you Norton, I love to be outside and am going to walk first. We have lots of hills where I live in Texas. The electric bike sounds cool. Here in Austin everyone bikes. I havent had dbs, just dx almost three years ago and finding my way. I really appreciate your reply and this board. Has gotten me through some questions I needed anwsered about living with this thing. D
Hi Everybody. I have been re-reading the responses to this article. I must say that I am very excited about hearing others tell me about what exercise has done for them. But I still feel that I am not getting the message across properly. I am not an exercise freak! I do not do exercise, just for the sake of it. I have been led to understand that the production of GDNF, Glial Derived Neurotrophic Factor, in the brain is the result of the, 'FIGHT OR FLIGHT SYNDROME'. If we are faced with a threat to our lives, we have the option of running away from, or standing up to and fighting the cause of that threat, In both cases, we stand a good chance of getting injured. We would not have survived as a species, if we were not able to repair our injuries, which do not only happen to the bones and muscles but to the brain as well. The body produces various forms of trophic factor, which means, in layman's terms, REPAIR KIT! This GDNF repairs the damaged brain cells, which is the cause of our Pd. It does not cure Pd, because the Pd carries on damaging the brain cells, while exercise continues to repair that damage. That. I think, is why I have been able to live for over 51 years, since my first Pd symptom appeared. There is no mystery about all this. Scientists have known about GDNF since the 90's and have been able to manufacture artificial GDNF, but have not successfully found a way yet of getting it into the damaged area of the brain. I often wonder why our doctors don;t tell us about fast walking, which avoids the need to take medication? I suppose that there are a lot of patients who are unable to walk, or possibly unwilling to walk, and to whom the thought of taking medication is preferable.
For those who are willing and able to walk, what are you waiting for? You must not think that walking the dog every day will produce GDNF in your brain, it won't! There has to be an element of urgency in the exercise, to bring about this Fight or Flight Syndrome.
If we were to understand that no medication has been proven to slow down or even stop the progression of Pd, then we would think twice before taking any medication. In fact, if you took no Pd medication at all you would be in exactly the same stage, at any time, as you would have been in, had you taken some Pd medication. The big difference is that you would NOT have been suffering from any of the serious side effects of Pd medication, if you have NOT taken any medication. You would therefore be a lot better off without it. I must say that MAO-b inhibitors have the ability to help the patient to make better use of the dopamine already in the body and brain, thus not needing to take any levodopa medication, which has serious side effects. I took an MAO-b inhibitor for ten years, at which stage I was able to stop taking it any more, and have been off any Pd medication for a further 12 years since then, leading a normal life, albeit, still having Pd. We are not all alike and my determination may be different to that of others. My pain threshold may also be different to yous, but pain is not the major problem experienced with Pd. If you would like to know more about medication and exercise, and many more subjects relating to Pd, then go to my website: reverseparkinsons.net.
Hi Lazyrideruk. I recently, towards the beginning of this year, went to see the top neurologist in Cape Town to get his diagnosis of whether I do or don't have Pd.. He did his normal series of tests and he said that he has no doubt that I do still have Pd. He said that my Pd is not idiopathic Pd. What that means I do not know, because idiopathic means cause unknown. That would mean that we know the cause of my Pd, which of course we don't. You get my meaning.
Dr Norman Doidge came all the way from Toronto to Johannesburg to check into my whole story. He spoke to my GP and my 2 neurologists and they all confirmed my diagnosis and showed him my files. He then went with me all over South Africa to speak to patients I have helped. his story relating all of this is in chapter 2 of his book, The Brain's Way of Healing". If you are still skeptical then there is nothing I can do about it.
I am 9 years into my PD I have taken many different meds and have had many side affects
the only things my PD does to me is stiffness in my right arm. It was the first sign it would not hang down by my side it was folded across my chest
then i started to freeze and had slow gate andd small hand writing
all my meds caused me to twitch and shake I thought this was progression of my PD did not know it was side affects
just traded PD for side affects
i now take azilet and carbidopa-levodopa 25/100 as i see fit not as my doctor says he is only guessing
i started Crossfit 3 to 5 times a week 9 months ago
I can dead lift 365 lbs
back squat 265 lbs
run about 1 mile
front squat 195 lbs
CrossFit is constantly varied, functional movements executed at high intensity. Ok, now that you are saying “What the *@$&”, let’s break that statement down. A functional movement is a movement that incorporates multiple joints and can move a large amount of weight over great distances in a short amount of time. By constantly varied we mean that we do not repeat specific movements regularly as part of the main workout. High intensity means that we do these movements as fast as possible as part of a timed work out in order to move as much weight over a long distance in as short amount of time as possible. Why do we do things this way in CrossFit? Well, we are trying to increase your power output (Power= (Weight*Distance)/Time) across broad, time and modal domains. CrossFit is designed for this singular purpose. We want to turn each and everyone of our athletes into a race horse, not a show horse, aesthetics are purely a by-product.
Fitness is most easily described through the 10 general physical skills: cardiovascular/respiratory endurance, stamina, strength, flexibility, power, agility, speed, coordination, balance, and accuracy. In CrossFit, we believe that you are only as fit as you are competent in each of those skills, which requires a wide variety of exercises and workouts. This type of fitness breeds general physical preparedness, which simply means that you are not a master of one skill, but are prepared for all of them. Fitness also includes eating healthy, which is as simple as eating lean meats, fruits and vegetables, and some nuts. Being fit is not merely being healthy, it is a higher standard and harder to achieve.
this was friday's wod (work out of the day]
Iwas able to do three rounds in
2001m Row on rowing machine just once takes about 9 minutes at a good pace
30 min AMRAP (as many reps as possible in 30 minutes)
9 deadlifts, i used a 90 pound barbell for these
11 burpees google it
9 hang power cleans from floor to shouders
11 box jumps, 24/20 jump up on a wood box
9 front squats hold barbell across shoulders in front
11 KB Swings, 1.5/1.0 lift and swing 45 pound weight above head
9 push press press barbell from shoulders to over head
Hi Bailey. What you are telling me here is wonderful, but it does not meet the needs of the majority of Pd. patients. They either do not live near a gym or more often, cannot afford to join gyms. What I am encouraging people to do is WALK FAST. In that way their brains produce a substance called GDNF (Glial Derived Neurtrophic Factor). This GDNF repairs the damaged brain cells.
If you contact me at johnpepper@telkomsa.net I will send you all the details about the production of GDNF.
Many Pd. patients are unable to afford to go to gyms as you do. They are generally unemployed and unemployable. The cost of medication is a heavy burden to them. FAST WALKING can be done by anybody, but they first have to be able to walk properly, which I am able to teach them. I don't charge them for doing this, but it costs me a lot of money to get to them. You may wonder why I don't just make a video of what I do and they can follow that. But that has not proved successful. I have to physically show them.
That is why I am embarking on a trip all over the world to show people how to control their movements by using their conscious brain. I am hoping that people will help me financially with this effort by clicking on: life.indiegogo.com/fundrais...
and making a donation towards my travelling expenses. Whether people do help me or not, I am still going to do it. I leave today on my first trip to LONDON and AMSTERDAM. Then I plan to go to the USA and Canada and then on to Australia and New Zealand. I will be 81 years old when I go to those countries and that is not easy.
So why not help me do this and get people all over the world to REVERSE THEIR PARKINSON'S DISEASE!
Hi Ampiantoni. Yes! I will certainly include Portland in my itinerary if you or someone else is willing to organise the meeting. I have had wonderful results so far from my trip to England, where I gave 4 talks, attended by nearly 300 people. I showed at least 20 patients how to walk and all of them were able to do it properly. 2 of those patients were in wheelchairs and had been in them for some time. They managed to walk normally. here is what one of them wrote to the lady who organised the meeting:
A woman who was at the Ashford event with her husband in a wheelchair, has posted on the chat room site 'HealthUnlocked' that she has been walking with him eight minutes each day since the event. They were inspired by the talk.
Hi too dangerous because of crime or is it the weather? If it is crime, as it is here in South Africa, then you have t look for a safe place to do the exercise. If it is weather you have to find an indoor facility, which is normally very expensive. But it is terribly important!.
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