Why is the medical profession, generally, not telling us about this?
How many Pd patients know that energetic ... - Cure Parkinson's
How many Pd patients know that energetic walking can REVERSE PARKINSON'S DISEASE? Refer to 1st World Parkinson's Congress held in Washington
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JohnPepper
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Firstly one has to have the energy to do energetic walking.
I used to walk miles every day but now cannot.
If there is a secret to it please let me know
JohnPepper in reply to
Hi Oldtyke
The question is, Why is the medical profession generally not telling us to do energetic walking?
You are raising the problem of finding the energy to walk. Let me use an analogy here. Many mothers of young children can be dead on their feet, after a tiring day of looking after children, running a home, feeding a family and tending to a tired husband's needs; yet, when her baby cries, in the middle of the night, or even before she has gone to sleep. she finds the energy to get up and attend to that child?
I am also a Pd patient. I also often feel absolutely fatigued, but if there is a reason to be fatigued I take a nap. However! If, as is often the case, I feel too fatigued to walk, and I have just got out of bed, I just knuckle down to doing what I know is essential to my wellbeing! I don't dive in to the feeling of tiredness. I find, after ten minutes or a bit mor, I lose the lethargy and my walking gets back to normal. Don't give in to it!
John
I agree, Often when I push myself to get walking,the energy comes after a few minutes
THANK YOU FOR THE REMINDER! I need that! Sorry about getting excited when I began this reply.~~~Dennis
Hi John, this is regarding an old post you wrote to Oldtyke about finding the energy to walk. Unlike his problem, my feet just won't go for most of the day......no matter how much I want them to. That is why reading your book when a person is FIRST diagnosed is important. I think it's too late for me after 27 yrs. I still force myself to move even when it's difficult, but I can't get much done in a day and for the first time in 27 yrs, I am beginning to get depressed. I'm fighting it tooth and nail, though.
Hi Jocee. Do you mean that your legs Freeze? If so, have you read the bit about taking conscious control of your walking, instead of 'willing' your feet to move. To put this in another way; If you wanted to lift your knee up in the air, you would be doing that consciously. So! If you are freezing, then stop trying to will your body to walk. Relax, get your balance, and then put your weight onto one leg and then lift the knee up on the other leg and start moving the body forwards and place the heel onto the ground purposefully. In that way, you completed the first movement of the walk. Then follow it by consciously placing the weight of your body onto that front foot and lifting the back leg off the ground and bringing it forwards and placing that heel on the ground in front of you. If you concentrate on the lifting of the one leg up and placing THE HEEL ON THE GROUND, you will maintain that conscious control. Try it, it has worked for every single patient I have ever worked with.
Good luck!
John
I will try this for when I freeze, but I wasn't talking about freezing. I can inch forward at a snails pace, not actually frozen to spot, but almost as bad. It happens when I eat protein, get stressed and for most of the day now. When I am in this state, even a walker doesn't help. For many yrs after I was diagnosed I would walk the high school track. I could not do that now. It's just not possible most days......I gave up driving because I don't want to put anyone else at risk of an accident.
Hi Jocee. I am saying that whatever the movement problem is, it is caused by the subconscious brain not being able to communicate with the muscles in your body. The good news is that your conscious brain does not have this problem. If you do something, which is not done subconsciously, such as lifting your knee up in the air or lifting one of your legs up in front of you; you will find that you are able to do this, because you are doing it consciously. Now, back to the walking. You never walked slowly before you started with Pd. shuffling is caused by the Pd, but if you consciously take over control of your legs and arms then you will find that you can walk properly. NOBODY HAS EVER BEEN UNABLE TO DO THIS, while I am holding their arm, for safety purposes, and me prompting them what to do. They do everything, but in that situation they were doing it all consciously. Everybody is able to do this. Try it.
John.
Hi Jocee. I am saying that whatever the movement problem is, it is caused by the subconscious brain not being able to communicate with the muscles in your body. The good news is that your conscious brain does not have this problem. If you do something, which is not done subconsciously, such as lifting your knee up in the air or lifting one of your legs up in front of you; you will find that you are able to do this, because you are doing it consciously. Now, back to the walking. You never walked slowly before you started with Pd. shuffling is caused by the Pd, but if you consciously take over control of your legs and arms then you will find that you can walk properly. NOBODY HAS EVER BEEN UNABLE TO DO THIS, while I am holding their arm, for safety purposes, and me prompting them what to do. They do everything, but in that situation they were doing it all consciously. Everybody is able to do this. Try it.
John.
to JohnPepper: You are right! It does work. My husband tells me to STOP! Then he says take a big step. It works every time. I was never told about the sub-conscious /conscious brain difference before!!
Hi Cabbagepatch. Not being a doctor, I had to work this out for myself. It all began when I wondered why I was not swinging both my arms. I could do it, when I concentrated on doing so, but the moment I stopped thinking about it, my right arm stopped swinging. I had to assume that my subconscious brain was controlling my walking movements, because I never gave them a thought until I got Pd. Only after I had been walking at speed for several years, and damaged a disc between two vertebrae, necessitating the removal of the disc. That was caused by my bad posture, and the fast walking. After the laminectomy, I started to walk again, and because I could not walk very fast, after the operation, I had time to think about what was causing my posture to be so bad and why i was walking with a sort of a limp and only taking short steps. I found that I could take much longer steps and I could stand up straight, if I concentrated on doing so. I wondered why my conscious brain was able to control the movements properly, while the subconscious was not able to? This is all my own thinking and was not worked out by a doctor or any other medical person. Having Pd is probably the best way of finding what we can do to help oursselves, providing we have an open mind.
John
and me
I have been told by my neurologist that the best way to slow down Parkinson's is to get vigorous aerobic exercise - but not that it can reverse it. I race-walk and run a total of 26 to 30 miles per week (depending on the mix of workouts) and it does help, but the disease is still progressing. I can still participate in 5ks (though it takes longer to warm up than to do the 5k) and find this easier than walking in a grocery store. However, I also require fairly large doses of meds (10 tabs of Sinemet 25/100 during the day and 2 of the extended release 50/200 at night plus Mirapex. Without these meds, the rigidity in my muscles is almost too intense to workout.
I have also been running and race-walking for many years, so it is part of my life. This makes it much easier to do than to start doing an exercise you have not done in the past when you are in your sixties or higher and have little or no energy. I move at a fairly quick pace when race-walking (11 minute miles doing 5 and 10 kilometer races, 11:30 miles in practices doing distance workouts and faster doing speed workouts. The typical "fast walker" is not getting this level of aerobic workout.
That said, I would encourage anyone who is still able to increase gradually their aerobic workouts with their doctors ok. yes, it gets me tired easily, but I get far more tired when I do not do them.
Hi rch21
I am so pleased to hear your answer! Yes exercise has meny good affects on Pd. I must warn you that I found that doing too much exercise is worse than doing none. You would have to read my book to learn more about this phenomenon, which would take for ever to put into this answer.
I have not taken anything other than a monotherapy of an MAO-b inhibitor, aothe than for three months, when I also took sinamet. I cannot comment on your activities, because your medication was so kuch differen to mine. I am not a doctor, just a simple Pd patient.
John
in reply to rch21
Hi. I read your reply with interest, as I am planning a 5k walk in June. I take sinemet 4x daily and wonder how it will be effected by run/walking a 5k. Guess I am scared of getting half way through and needing my cane. I walked a 5k a couple years ago, but pushed my 6 month old granddaughter in a stroller which helped my balance. any thoughts?
Thanks,
JohnPepper in reply to
Hi VLRoark
I have only ever taken sinamet for three months, when I stopped taking it. Therefore, I cannot answer your question, based on my experience.
I can suggest that you start practicing for a short time, say ten minutes, at just short of your maximum level, Then increase this time by fivee minutes, every second week. You will then be far better able to do the 5k than if you had not done any training. You should try to continue walking, after the 5k race, and do it until you are no longer able. I still walk for one hour, three times a week, and have been doing it since 1994.
John
Emily1957 in reply to
Vigorous exercise forces the brain to produce dopamine. Don't worry that exercise will make you need more sinemet; it'll probably make you need less.
do you use magnesium for your cramps ? very helpful and essential for normal body function.
rch21, Congratulations and keep on telling people about it. 11 minute miles in racewalking is awsome. That's what I did at my almost best and now it's closer to 15 which I call crawling but I still do the miles, about 4 to 6 a day and it's a great help. I suspect I'm older than you are, 74, so that's a factor but you are doing well by anyone's measure.
racerCP, yes, you are older than me - I'm only 60 - but the main thing is to keep up the cardio exercise and keep making the brain work to build new pathways and even new neurons. The progression of my illness has flattened out, and I keep on putting in the miles as you do. I also still compete in local races just to help push me to maintain turnover. Also, the closest I feel to "normal" is when I am 4-5 miles into a workout or race and am really working hard - so there is an additional payoff. Keep it up and thanks for the encouragement.
Hi rch21. It does me a power of good to read your's, and racerCP's articles. I have been where you both are, but I am now nearly 80. You will pick up injuries doing hard exercise every day. Be warned! Do it every second day, it is better for you. However! Whatever you do, don't stop!
John
John - I am very aware of not overworking muscles by doing hard exercise every day. My regime is generally something like this:
1, long race walk on Monday (5-6 miles at an 11 min pace)
2. interval work race walking (2-4 miles) and running (1 to 3 miles) and core/strength work)
3. recovery run/race walk - 1.5 mile run at 10 min pace and 3 mile race walk at 13 min pace
4. repeat Monday
5. speed workout, almost all race walking, (1 to 2 miles) and core/strength work)
6. recovery race walk - 3 miles at 13 to 14 min pace.
7. off
This varies depending on how I am doing, race participation, etc. warm up, cool down, stretching, balance exercises are every day. Thanks for your interest and support. Rich Higgins
Hi Rich. I don't want to sound like an old woman, and I have to be careful of even saying that, with respect to old women. I don't want to be held responsible for encouraging people to exercise and then they get injured and blame me!
Keep up this good work, it will pay you dividends in time to come.
Kind regards
John
Excercise doesn't have to be in the aerobic form. There are a lot of excecises that can be just as beneficial even if you are confined to a wheelchair or have trouble standing for long periods. The key is you have to be consistant in doing them. I went to a seminar recently where this point was driven home. There are books and tapes geared toward the PD parient with some great excercises you can be doing. After a while I think if your consistant you will find yourself becoming more energenic as i have.
Hi mistydog
Not being confined to a wheelchair, I am ignorant of this info. I am pleased to hear that this does work, when we do other forms of exercise. I would like to know how vigorous the exercise is, which has positive affects on the patient?
John
There is a book recommended by the APDA that demostrates different excercises which help . You can get the free copy by calling Boston university at 888-606-1688 or email rehab@bu.edu or go to the website by.edu/dargent and type Parkinson under search.
Excecise dosen't need to be vigourous to be helpful just work help keep flexibility. One the more fun and popular ways people here in NH with trhe different PD groups is ballroom dancing ! It's fun and yet it's good for you. There is a cd out called Benefits of Music and Movement in Parkinson Disease which is inspirational you can go check it out at wwwParkinsons-Health.com
Hi mistydog
I don't know that I agree that exercise doesn't need to be vigorous to be helpful. The results of the study on exercise, presented at the 1st World Parkinson's Congress, held in Washington, by DRs Beth Fisher and Michael Zigmond, they stressed that the high level of exercise was the most effective. I don't remember if it was in their report that this was the result of the natural 'fight or flight syndrome', but I have read this somewhere and it makes sense. Something has to trigger the production of GDNF in the brain, and that makes the most sense.
John
My neuro DOES KNOW this. He's a research doctor and started an exercise class here in NYC, Two years in a row I was convinced I was housebound forever and was recruited into a walking class to prepare for Parkinson's Unity walk. I can walk 2 miles with company. He went to 3 countries, very poor, where rigorous physical therapy is prescribed once PD is diagnosed. THE RATE OF PROGRESSION IS VERY MUCH LOWER THAN THE U.S.
Hi PatV
I am so pleased to hear this from someone else. Keep up the good work!
Tell others about this!
John
Hi mistydog
Why walking is so good for Pd is nothing really due to its aerobic nature. There is something, of which we have all heard; the 'fight or flight' syndrome! When we are in danger, our bodies produce something we call growth factor, all over the body. In our case, what interests us is that our brains produce a special growth factor, which repairs the damaged brain cells, which in turn, reverses our Pd symptoms. For more information on this you can go to my website reverseparkinsons.net, where you will find all the information. Alternatively, look at GDNF on this website. When we walk hard, or run, the body seems to think that we are under attack, and are either running away from danger of fighting it.
At the 2006 1st World Parkinson's Congress, held in Washington, Drs Beth Fisher and Michael Zigmond told the audiencs about this phenomenon.
I have been doing energetic exercise since 1970, which is probably the reason why it took so long for my Pd to be diagnosed in 1992.
John
Thanks for your advice about the differentw muscle groups. I am now concentrating on walking a lot one day , weights and resistance. Then qi gong the next day which is more gentle. Is that right..? What is your book called. .? Best wishes
Hi hilarypeta
Don't forget that your muscles need time to recover from all forms of exercise, so bear that in mind.
I don't know if I am allowed to tell you the name of my book, but here goes: 'Reverse Parkinson's Disease'
You can visit my website for over 250 back-up pieces of information:
John
hi there thankyou for sharing this information .. i was wondering if there is a Pdf version of your book..i am 48 and have had PD since i was 25 and have missed out of alot of things with my nw grown children and grnkids ... my meds are no longer working as well as they did and having dificulty in getting the dosage right with my madopar and amantadine so in fact im lucky to get a on day or even half an on day once in 2 weeks... am awaiting an appointment with my neurologist to see what the next step is..id love to read your book but sadly 33 American dollars is way out of my reach as im on A invalids benefit here in New ZEALAND.....
Hi liljulez
I have personally never never been in your situation. I have been able to avoid taking any other medication than Eldepryl, which is an MAO-b inhibitor, different to any other Pd meds. You can look at this on another blog on this website.
You could try to see what exercise can do for you!
I would be happy to send you a book, free of charge, if I were able to get your details, but that is not allowed on this website.
John
hi again...so how do we give out our email adresses then>
I am lucky in that I live in a place that is 80's in the day adn 70's at night all year long! Therefore, I can do water aerobics in the pool. I just run vigourously and jog in the pool 3x a week.. Less chance of breaking a bone from a fall - like what just happened to me while walking the dog for my "slow" walk. Fractured my tibia on the cement side walk in front of the house! Now, I have to wait for a month before going to the pool. But, I certainly can state that it really helps with PD both with motor and non-motor issues. I have had PD for 11 years+. However, cannot get azilect here in Colombia.
JohnPepper in reply to
Hi allnatural
I must tell you that water aerobics is not weight-bearing exercise, and does not do your bones a lot of good. I don't know if any studies have been done on water aerobics and their effect on Pd symptoms.
All the studies I have read have used walking as the ideal exercise.
I am not a doctor and what I say does not necessarily apply to everybody.
John
Well............darn - I've always hated weights and weight bearing exercises! But, I do need to strengthen my bones - I only weigh 100 lbs. and am Asian. Thanks for your comment, I'll just have to be more careful on my walks - maybe I'll take up, rather, try to take up jumping rope on my patio?
JohnPepper in reply to
Hi allnatural
Be careful when starting any new exercise. Start slowly. Do it under supervision of a trained and qualified instructor. If you don't you could do yourself a mischief.
Good lick!
John
Does anyone know of studies that show using an exercise bike is as effective as walking? I'm thinking it might be a safer alternative where there is the risk of falling when walking alone.
Hi Joanne_Joyce
Yes there have been studies done on this subject. NO! It is not as good as walking on an uneven surface, because it does not exercise the brain as much. The brain has to do far more work, while walking on an uneven surface. However! If you do not feel comfortable walking on an uneven surface then using an exercise bike, or a treadmill is better than not doing anything!
Remember! Our problem resides in the BRAIN. Exercising the body is very commendable, but exercising the barin is even more important!
Cycling is not as good as walking, because it is not weight-bearing!
Let me remind you that I am not a medical person. nor a fitness trainer!
John
Hi joanne ,Have you come across HIT High intensity training.There are several big studies worldwide including one at Nottingham uk.That study involved exercise bike riding 3x per week for 20 seconds.
It is a commonly held perception that getting in shape and staying there requires hard work and hours upon hours of training. Now, new research shows the opposite – just four minutes of vigorous activity three times per week is enough to make previously inactive men fitter and more healthy.
dailymail.co.uk/health/arti...
I've incorporated the HIT in my daily exercise bike routine and am enjoying it thoroughly. I look forward to increasing my speed each day and am quite proud of myself. But my legs have been acheing so I decided to do my other exercises every other day for a while. I'd love to hear from others about their experiences.
thanks john, im reading all of the accounts of people who have reversed pd naturally;;hoping to inspire me to keep positive. I had a set back in the summer zhen i tripped over uneven tarmac, my mouth hit a metal grid;;ended up with 4 new capped teeth and stitches;;its had an effect but i am up walking fast now but still more cautious on stairs;;
Hi Hilarypeta
I admire your courage! When you had that fall, were you concentrating on what you were doing or was your mind on other things? I just want to remind you that everybody is prone to falling, as they get older. It is not limited to us Parkies. Keep at it, and concentrate on what you are doing; you know the consequences of not doing so. If you were concentrating on your walking, I will offer my humble apologies for assuming that you weren't.
John
The car park was evenly tarmaced.the hole wasnt evident and i was hurrying to the car.my partner is sporty and much younger than me so it makes me walk quicker. The shoe got stuck in the hole and catapulted me ..my shoulders were not strong enough to hold my head up..i had 2 frozen shoulders. Prior to pd. peta
Hi hilarypeta
Thanks for sharing this with us all. Accidents do happen to all of us, and are often very hard to avoid. Hurrying seems to be a NO! NO! for us Parkies! Let us all learn from this. BETTER LATE THAN NEVER!
John
Difficult to change personality but i feel we must learn its ok to be laid back a bitmore. Couldnt get your book from amazon as not delivered to
Paris/france..bought it on the kindle.
Any quick tips for a fluid problemm...mouth, nose, eyes, and wees..my whole body seems like its crying!..esp mornings..thanks
Hi hilarypeta
I am sorry it has taken so long to come back to you.
I have two conflicting salivating problems. The first is that I appear to salivate too much, which results in me drooling. I find that I have to consciously swllow the saliva at regular intervals, thus geting rid of the unwanted saliva. Normally, we swallow the saliva naturally, but with Pd this does not work. Secondly I get a dry mouth, quite often. When thinking this through, I came to the realization that this only happened when I was under a lot of stress. ie, When trying to access words, while on the telephone to an important aller. What happens to the saliva, which is normally in abundance, I do not know.
My eyes water a lot, invariably when I am reading, It is as if I am crying! This is often accompanied by yawning! Don't ask me why this happens, I have been unable to do anything about this!
As far as urination us concerned, my laundry tells a very sad story. I leak a lot and I cannot control it, as I don't know when it is happening. I get sudden urges to urinate, and when I finally get to the toilet I cannot urinate. I also get sudden urges to urinate, but if I take no notice of them, I wet my pants. So! I have to take each urge seriously, regardless of which variety it is.
You ladies may have better control of your waterworks than us men do, but I am sure you have the same problem!
'Normal' people become aware that they will soon need to urinate, but that is not an urgent need. We only get the final messaage, when it is absolutely urgent. Why? I suppose it is the Pd!
John
Thanks for being so honest...i think we generally have trouble with fluid production..either too dry or too wet! I wonder if acupuncture might help? It usually means fluids relate to stress in chinese medicine.. It seems our whole system is on alert...too hot, too cold andtoo noisy ,too light, or is that just the aging process?
Hi hilarypeta
I apologise for the time it has taken to respond to you. AS Pd is a brain problem and any form of communication between the brain and the body or inside the brain itself is obviously a problem, we can expect all sorts of communication problems. What is new?
John
To me it's common sense. PD is a neurological disease so muscles retain their potential to move, UNLESS NOT USED. Then they start to lose it. SO MOVE IT, MOVE IT, MOVE IT (mindfully, of course) and have fun 
Hi PatV
We should all have a big notice on the fridge door, and on the bedroom ceiling - IF YOU DON"T USE IT, YOU LOSE IT!
I said the bedroom ceiling, because it is probably the first thing you see, when you wake up! There was no intention of suggesting anything else!
John
Following John's discussion here I found 16 articles that quote the research of Dr Beth Fisher including this one (2011) which reviewed all the literature and research to date. It supports much of what john says (though does not go as far as claiming reversal of symptoms but possible slowing progression). It also makes a few other interesting observations. I have just included a small amount of the summary here.
The article is headed:
"Does vigorous exercise have a neuroprotective effect in Parkinson disease"
By J. Eric Ahlskog, PhD, MD
From the Department of Neurology, Mayo Clinic, Rochester, MN.
A recent meta-analysis of studies confirmed the association of diminished PD risk with moderate to vigorous activities in preceding years. To put this into perspective, the risk reduction documented ...... was of a similar order of magnitude to the PD risk reductions previously noted with caffeine consumption or smoking, although presumably by quite different mechanisms.
if exercise reduces PD risk, it might also slow the progression of PD. ... findings do not prove that exercise slows PD progression, but a neuroprotective effect is certainly plausible, if not compelling. Ideally, this would be assessed in a prospective clinical trial, ......
The overall body of evidence suggests that vigorous exercise should be accorded a central place in our treatment of PD. It should be encouraged and emphasized as potential strategy for a more favorable disease course.
There are 2 fundamental components to this strategy.
First, clinicians should specifically counsel patients with PD to engage in regular exercise, ......The choice of exercise should not only be tailored to the patient's capabilities, but also their interests, .......In recent years, a variety of exercise routines have been publicized, such as bicycling/tandem bicycling or vigorous dancing. The literature does not endorse any one specific type of exercise, but rather vigorous exercise in general. Any routine ultimately leading to physical fitness should be beneficial.
Second, clinicians must facilitate exercise by appropriately aggressive use of PD drugs. Over the last 2 decades, very conservative symptomatic medical treatment has often been advised, “saving” the best PD treatments for later.....this approach may translate into lost opportunities. A reasonable goal when prescribing PD medications is to maximize patients' capabilities to engage in physical activities and potentially achieve the best level of physical fitness possible.
Full article at :
ncbi.nlm.nih.gov/pmc/articl...
Hi Hikoi
I have had problems with my hard drive and am unable, at present to respond to the above information as it is contrary to mine. I will respond as soon as I can get up and running again.
John
Hi Hikoi
This subject appears to be waining but there is still a lot I need to say about the choice of abdicating our control of our Pd to medication or using some appropriate medication while doing tried and tested exercise, to help the brain cope with the Pd.
Nobody seems to talk about the terrible side effects of LDopa medication, and other forms of Pd medication. Why is that? Does it not matter to anybody that after a period of time, the side effect of developing dyskinesia is both unsightly and debilitating, to say the least. Many people think that dyskinesia is a symptom of Pd but to the best of my knowledge IT IS NOT! I Believe it is a side effect of LDopa medication!
There are many other side effects, which patients have to suffer. Why go through this if there is a better approach?
Is exercise so difficult? Or is it that we get lazy, as we get older? Is taking pills a lot easier than exercising? Even though we all know what happens if we don't exercise and we do take more and more pills!
John
Hi John
That report is a review of all the research on exercise including what was presented at WPC and the Dr (from the Mayo Clinic) has summarised the findings. It is better to read the document .
At the risk of being boring here are two more links i found, the first you will probably have and the second has lots of interesting and relevant links. .
this first link I believe is the research report used by Dr Fisher as the basis of the talk at the first WPC . It is very long but reading the conclusions at the end is interesting ncbi.nlm.nih.gov/pmc/articl...
Second link is to a conference report booklet solely focused on PD and exercise. It contains excellent information including a report of the presentation by Prof Zigmond. Also one I havent read yet on vibration exercise.
Hi Hikoi
I tried very hard to read through Dr Beth Fisher's lengthy report but the medicalese was too much for me. I skimmed through to the results, which were also too technical for guys like me. But it was perfectly clear that intensive exercise is good for people with Pd and their symptoms were definitely reduced in severity.
What amazes me is that I have been rattling on for the past ten years to every Parkinson's organisations I could get hold of ,and none of them seemed interested in trying to find out why and how I managed to reverse my Pd. I realize that they are not doctors or scientists but surely, they are in the position to motivate the scientists to investigate my case?
Why test poor little rats and mice and other PwP's when they can see the results of what I am doing, on a daily basis, to overcome the affects of Pd!
I only ever received negative responses from local doctors in South Africa, with the exception of those who know me personally, and I am too naiive to understand that it is not in their general interest for patients to get better! I know this sounds foolish, but I am forced to come to that conclusion!
It certainly is not in the interests of the pharmceutical industry for people to not need any medication for their Pd. I am sure that they are also capable of influencing the medical profession to ignore my story!
Why doesn't someone come forward to investigate my Patkinson's experience?
John
John I don't think you say you are cured but that you have stopped and reversed PD, Is that correct? If so your brain must still show signs of PD.
Just because one neurologist diagnoses PD doesnt mean all neurologist would agree with the diagnosis. Misdiagnosis of PD is often said to be as high as 20% and more.
I expect for a person to claim they have arrested their Parkinsons they first need to give proof they have it and the best way available is to have a DAT scan. With a positive DAT scan you would have proof that couldnt easily be disputed. I think it would then be very difficult to ignore your experience and you would get quite different responses. I certainly would hope so.
Hi Hikoi
I have not heard of a DAT Scan, which might show my ignorance or maybe we don't have it here in South Africa. I doubr that!
I will go into it with my neurologist.
John
Hi Hikoi
I have spoken to my neurologist about this and if I want to take the very real risk of having radiation problems, then we can go ahead with this. After discussion with several people I have decided that, although it would be nice to have doctors agree that I have Pd, it would still not serve any real purpose.
There has been an international scientist, who has come a long way to see me and to talk to my medical people. I also took him all over South Africa to meet people I have been working with. He is absolutely convinced that I do indeed have Pd. He has followed up on this by going into scientific records and has satisfied himself that it is not only possible for this to happen to me but in similar circumstances it could easily happen to others.
He was quick to point out that we are not all the same. We are not all as driven as I am and we are not all as open-minded as I am.
Having said that, he also said that if anybody looked at all y symptoms (37) he/she could find it hard to come up with anything other than Pd.
My detractors, and there are many of them, will continue to find reasons to not believe what I have achieved and there is no way of fighting them!
John
Hi John
I understand your reasons and as well as the reasons you give it is an expensive procedure and not available everywhere. I am surprised that your neuro seems to think there is a very real risk of radiation problems, but of course all investigations do carry some risk.
ema.europa.eu/docs/en_GB/do...
Best wishes with your endeavours for the Parkinson community.
Thanks Hikoi
There are caring doctors and others, who don't have time to really look into new methods. I will continue to ask around!
John
I don't know John but thank you for telling us! Cheers
Thanks John, and yes you have demonstrated the value of that by reversing your own Parkinson's which is why I am here to learn from you but I have yet to get a copy of your book. I am drug free now except for vitamins, aspirin and super bio cur cumin and my RBD has improved to a degree. Yes energetic exercise does help as you say along with changes I am sure you also made, such as diet and reducing stress. Thanks I am, along with everyone else or we wouldn't be here, eternally grateful to you for providing support, hope and a possible cure. Cheers
Hi Bitsy
For some reason
John Pepper can not communicate on this website and we have asked the HU tech team to find out why. In the meantime John has asked me to reply to you on his behalf. You say that you are wanting to obtain a copy of his book which sets out how he reversed some of his symptoms. You can buy a copy from Amazon.com. The book is called 'Reverse Parkinson's disease'. Alternatively, you can buy a copy from his own website at reverseparkinsons.net.
Hopefully, John will be back on board soon.
Regards
Norton on behalf of John Pepper
Thanks John - elated appreciation. Has anyone mentioned High Intensity Training (HIT). You might be interested in a book by Dr Michael Mosley titled 'fast exercise' as well as his other book titled 'fast diet' on exercise and fasting in the generation of new cells. Cheers
I would like to tell about my experience with water. Since I was a girl I love swim but i didn't practice often by the last 10 years. One month ago I started to swim not vigorous because I'm not in condition. Now I'm swiming almost daily and the changes is spectacular. Some days looks without parkinson and other only little. Half hour of swim is equal an one hour of any aerobic exercise.
Water is very friendly with people with PD. Try it and let me know.
Regards.
Guadalupe.
Hi gmunsot
All vigorous exercise is good for Pd. However! For the best results, it has been found that weight-bearing exercise is better for the body and also for the Pd patient. When I say better, I mean that it produces the most GDNF, which is the chemical that reverses the barin damage. GDNF is Glial Derived Neurotrophic Factor.
I think the answer to your question is ONE, you. Everybody else talks about slowing disease progression and reducing symptoms. These are not the same things as reversing Parkinson's.
I understand you are questioning REVERSING parkinsons Soup. I agree it should be questioned in two respects.
I do not believe the doctor said this at the first congress, she would have said something like it may slow progress.
Secondly not questioning your particular experience John but you tell us you do not know anyone else who has done this through your regime.
Hi Soup. I don't know if you are questioning my claim to have reversed my Pd? If you are, and you are entitled to question it, I have to pose a question to you, in return.
What would you call it if many of your symptoms got a better? What would you call it if you had begun to feel a lot better? To begin with, I was tempted to say that I had managed to cure my Pd, but that soon became obviously wrong. Several years ago, I had to stop walking because of a torn ligament in my foot. I was unable to walk for five months, during which time, my symptoms had already started to return. I had started to shuffle and dribble again, and my clumsiness became very debilitating. It was obvious to me that the Pd was still damaging my brain cells. I had to also assume that the walking was the only thing that had changed during that period and must have been the cause of the reversal of that damage, otherwise, what else could I think? I am in the same situation as everybody else. I can either sit back and do nothing about it or carry on walking, dealing with my stress levels, eating properly and being positive.
John
I have PD, I feel better now than I did five years ago.
You do keep saying that you've reversed damage.I respect your argument,staying positive and stress avoidance are essential,unforunatley living does not always give us that option,but yes on this I am with you.
You are not however reversing the process.You doing a great job at supporting your illness with all the positive things you do.You Have problems driving,dystonia in your foot,and the dreaded,dribbles from a dopamine deficient, parkie bladder as do I when,I feel so good,I forget or delay taking meds
I have excellent control of my symptoms most of the time and this gives me great confidence in managing my illness.Indeed I have no tremor whatsoever and it was so bad I couldnt write and eating out was an embaressment.I would never claim reversal,because it plainly isnt but there is value is in sharing your strategies,I have for the moment regained control of some things,but PD is there and it may well return tremor to me.
I don't think we need to debate whether or not "reverse" is the correct term to describe what happened if someone had symptoms and then doesn't have them anymore. What is wonderful is for everyone to share that they did that made them better so we can all give it a try.
One other point. There are exercises that we all need to just increase our flexibility because PD tends to make us stiff and there are exercises that appear to help produce dopamine, e.g. the energetic type. We need to do both types.
Yes you are quite right joanne .Im posting that link for the HIT training.
dailymail.co.uk/health/arti...
This is fascinating. Are you aware of any studies on its effect on PD?
I find it fascinating,I know of studies including trials done with nearly 5,000 patients who have a previous history of heart attacks and strokes.
You can get a dose of HIT while walking or even from climbing the stairs.
The benefits greatly outweigh the risks.
It would seem logical that it could be of major benefit to many PD sufferers as it is already proven by measured scientific evidence that;
Just 3 x 20 second episodes a week of HIT for a period of one month can significantly improve SLEEP ENERGY MOOD and FITNESS.
Rowing machine Exercise bike or Nintendo Wii Its grapple-able and graspable for most of us.
HIT makes your muscles produce new and more efficient mitochondria, the tiny power-plants in your cells that convert glucose into usable energy.
Joanne I would recommend you watch this, and will be interested to know what you thoughts are after doing so.
Thanks
Hi Soup. You are correct! Dr Beth Fisher did not use those words. This is part of what she is reported to have said:
For exercise-testing of patients, use was made of a treadmill with an overhead bodyweight-support suspension harness to allow high-intensity exercise without any danger of falling or injury. Patients were divided into three groups: a high-intensity exercise group with MET 3.5 and above, a low-intensity group with MET below 3.0 and a no-exercise control group (1 MET=1kcal/kg, h). Testing was carried out in 24 sessions, each of 60 minutes duration, over a period of 8 weeks.
The outcomes of the exercise were measured in terms of changes in disease severity, functional performance (stair climbing, stand/sit movements) and brain function testing. This latter test, carried out using Trans-cranial Magnetic Stimulation (TMS) techniques, provided the most significant indications of the benefits of exercise. At various levels of stimulation, TMS was used to provide a Motor Evoked Potential (MEP) response, with peak-to-peak maximum amplitude and cortical-spinal rest time (Silent Period Duration, SPD) being measured independently in both brain hemispheres. This enabled a comparison to be made between the more the less affected sides in Pd patients and between Pd patients and healthy controls. SPD tends to be shortened and MEP shows higher peak-to-peak rest values (hyper excitability) in Pd.
Comparison between pre- and post-exercise readings showed that exercise led to a convergence to normal values in Pd patients, with the higher intensity exercises having the greatest effect.
With my experience of exercising at a high level, I have to assume that, "Convergence to normal" means getting better. I have got a great deal better, but I am not cured. I am able to live a normal life, providing that I continue to exercise.
I can understand doctors and the pharmaceutical industry carrying on about exercise not making us any better, but when patients decry it, it can only be because they have not tried it.
John
I don't think I said anywhere that exercise does not make you function better. I, like you, believe that you can alter the rate of progression of the symptoms by exercise and probably by other methods but of course proper studies need to be carried out.
At the WPC in Montreal, boxercise, dancing, aerobic exercise and weight lifting type exercises were all reported to have had improved symptoms as measured against one scale or another. There were probably some that I didn't catch but then it was only 4 days long and there is a limit to what one can absorb. None of these provided evidence of brain scans to show neurorestoration of neurorprotection and it is at this level I have concerns about the use of terms such as "Reverses Parkinson's."
I agree that we have more to lose by ignoring these results than by getting out there and exercising but I don't think that we are well served by inaccurate terminology. Let's say what we mean and mean what we say.
Your regime worked for you, it has slowed your symptoms progression and long may it last. In our house we haven't waited for the scientific evidence to back up the claims for the effectiveness of exercise but now we need large, properly conducted studies to find out exactly what is going on to convince the lethargic members of the community and indeed the medical commissioning boards in the UK who fund physiotherapists and community exercise programmes.
Hi Soup. I am sitting in th Kruger National Park and am viewing this site for the 1st time in 5 days. Sorry for the delay.
I use the term 'reversed' because the symptoms are better than they were. I also say everywhere in the book that if I stop exercising, the symptoms get worse, so I am definitely not cured.
John
Hi Hikoi. We might differ on this one, but we are both on the same side. There is no doubt whatsoever that my symptoms are much better than they were, 22 years ago, when I was diagnosed. Although I still have Pd, I am able to live a normal life, providing I do my regular walking. My Pd case has been investigated by a professional research scientist and everything I claim in my book, 'Reverse Parkinson's Disease' is as I claim it to be. This will one day be in the public domain, but when and in what I cannot say at this stage. All I can continue to do is to encourage Pwp's to exercise, and exercise and exercise. Oh! By the way, I forgot to mention exercise!
Kind regards
John
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