The Decision to Take Medication or Change your Lifestyle?

When patients are diagnosed with Parkinson's disease (Pd), they are faced with possibly the most important decision of their life. Do they start taking medication which, unbeknown to them, has not yet been proved capable of reversing the Pd, but of only hiding a small number of its symptoms, albeit temporarily? If they do decide to take medication, do they know and understand the serious side effects of that medication? Or do they start doing regular serious exercise; manage their stress levels; adopt a positive attitude and stimulate their brains? This is a very serious decision!

86 Replies

oldestnewest
  • "Or do they start doing regular serious exercise; manage their stress levels; adopt a positive attitude and stimulate their brains" I wish that had worked for me John !! - Unfortunately it did not, and I suspect it didn't work for folk like Mohamed Ali either.

    I can see your alternative working for those who have PD symptoms from perhaps too much dopimine in their system and burning some off would then indeed be useful.

    I take your point upon the real fear of trying medications that may not work or bring future problems - but living each day I think my neurologist's advice rings true when he said "My job is to keep you on the lowest possible medicinal therapy and your job is to stay as active as possible on the lowest dose possible."

  • Hi beauxreflets. I doubt if Mohamed Ali read my book or received such advice. The problem with all medication, regardless of what reason we take it, is that the body adjusts to that medication and in order to get any benefit from it, we have to increase the dosage as time goes by. Then we have to continue increasing the dosage every now and again until we are unable to get any benefit from it at all.

    All medication is toxic to the body and the body has to cope with that toxicity. With Pd medication, it would be acceptable if the medication did anything positive to slow down the Pd. But none of them does that. I have heard that neurologists advise that 10 to 15 years is the maximum time period during which levodopa medication will work before it gets to the stage where further additional medication has no effect. This information has been gained from speaking to patients and not having asked any neurologist personally.

    Where does a patient go from there? Do they take the risk of having DBS, if they are accepted, or do they become bedridden and incapable of movement?

    I, myself, with he benefit of having lived for over 50 years with Pd symptoms, would do anything, within reason, to avoid such an outcome. Improving our lifestyle seems to me to be the obvious choice before doing anything else.

    I am recommending doing serious walking, reducing serious stress, improving our attitude towards life and using our brains more. None of this can be harmful to anyone. Of course, suddenly trying to walk fast for one hour, three times a week, is not even vaguely possible for most people. I have never recommended that. In fact I recommend starting for ten minutes, three times a week, and slowly building it up over six months to one hour each session. I don't expect anybody to be able to walk at even eight minutes a kilometre, or nearly 12 minutes per mile, until a couple of years has passed. It is walking at nearly your fastest that brings about the required results, in my opinion.

    There is the other aspect of this advice. If you don't take any medication for two or three years after diagnosis, do you lose any benefit you might have gained had you started taking medication from the start? Again, in my opinion, No! You might have been able to temporarily overcome one or two symptoms, mainly tremors and rigidity, but that has not made any of those symptoms worse.

    Give this some thought before you start taking medication!

    John

  • Hi John,

    Perhaps Mohammed Ali has read your book and or received such advice; my point being that many who get PD are regular exercisers in the first place! There is no given criteria for who or why folk end up with these debilitating illnesses under the umbrella of Parkinson's Disease; it just creeps in!

    Looking back at my life there were a few very early indicators that my nervous system was not functioning 'normally' sufficiently to say that when I met a bed ridden sufferer where DBS had most probably sped things up, I commented then that I thought I had early signs of PD and putting that to the back of my mind got on with life, until PD kicked in with some vengeance following bodily injuries.

    Once diagnosed, I searched for possible cures etc., tried various diet and herbal remedies (including some of my own which have not had sufficient long term benefit to withstand any scrutiny to Market), and I continue to research and seek the illusive cure (while at the same time tending to avoid books and web sites that make claims sounding too good to be true).

    I feel sure that Parkinson's develops in totally different ways and in varying degrees, rates in progression for each individual, regardless of currently available PD medication and or regimes (which is why finding a cure for All may well come in many a disguise).

    Accordingly, I recognise the middle ground - combining your either or in this thread; Gladly receiving the benefit from PD Medication, correcting Physiotherapy and decompression of the spine, plus other changes in my lifestyle, which include taking Coconut oil (in moderation!) and other Natural foods and plant oils, as well as keeping as active as possible as best I can.

    Regards

    Andy

  • Hi Andy. I have never implied that doing exercise prevents anyone from getting Pd, if that is what you inferred in your first paragraph. I have been doing very serious exercise since 1970, long before I was diagnosed but after my first Pd symptoms started in 1963. That exercise was probably the cause of my Pd only being diagnosed in 1992. Only when I started to shuffle did my doctor send me to a neurologist, who diagnosed the Pd. 29 years from the time I noticed that I had no eye/body coordination. That is a long time. Usually Pd develops much quicker than that. From this I have to assume that all exercise helps to stave off Pd. But nothing we know of can cure Pd.

    I have not taken any Pd medication since 2002, which has been 12 years now. I continue to do my fast walking for one hour every second day and have stayed stable all that time. That still does not mean that I am cured. If I stop the walking, due to injury or other health problems, the symptoms start to get worse, so I still have Pd.

    There is no one form of Pd. I have seen articles where it has been described as having up to six different types. My guess is that there are as many different types as there are patients, because the position of the affected brain cells in each patient are not the same. If each brain cell has a specific function, which I assume it has, then each one of us will have different combinations of symptoms.

    John

  • Like metacognito, I am only implying that the 'either or' aspect to your post does not seemingly ring true.

    Yes, it is good to share information and experiences that may assist others who are suffering. Without the physiotherapy and the exercises I regularly do to decompress the spine I would have needed invasive surgery to relieve the trapped sciatic nerves that were affecting my ability to walk or sit without horrific pain.

  • Hi Beauxreflets. I have personally had two discs removed from my lower back and know exactly what sciatic nerve pain is. I had to live for 17 years before doctors were prepared to remove the first one in 1977. I had a second one removed in 1998, due to walking with a bad posture.

    Patients can do both; take medication and change their lifestyle. It is easier to help patients who do not take any medication than those that do. The problem with taking medication is the side effects. No medication means no side effects. The lifestyle change I refer to is starting to do regular energetic exercise. This should be done under supervision and slowly to begin with. I have covered this point many times in other posts.

    Pd is a movement disorder and the more we get our bodies to move the better I think it would be. I walk for one hour three times a week on alternate days. I was in the habit of walking 24 kilometres in that time. As I am a lot older and can only cover 21 kilometres in that same time. to begin with I was only walking for 20 minutes and covered less than 2 kilometres in that time. It took me over 2 years to get down to 8 k's in 1 hour.

    John

  • Hi beauxreflets. I have never claimed that I don't need to see a physiotherapist. I often injure myself, overdoing the walking, and I often need help from professionals.

    Here I am making the statement that we should not go straight onto medication, which has such serious side effects, but consider doing serious walking, getting rid of serious stress and adopting a positive attitude. These actions apply to everybody, not just Pd patients. We all need to follow this regime as it is a healthy approach to keeping ourselves well.

    There is one other aspect that I have just touched upon, and that is 'Loss of confidence'. I am going to write a new post on this subject.

    John

  • Surely you're not implying that an optimistic, stress free attitude together with regular exercise will spare people from the progression of PD... and, further, from the need to heed their practitioner's advice regarding potentially helpful meds & supplementation everafter(?!?). A positive, stress free attitude and exercise are widely recognized as helpful for minimizing effects and, in some cases delaying onset of symptoms, but implying it all boils down to a simple 'either-or' is a "serious" distortion of the established science.

  • Hi metacognito. Let me explain where I am coming from. I was diagnosed with Pd in 1992. With the subsequent knowledge gained I realized that my first symptom had started in 1963, when I opened my new printing business. In 1994, I was prescribed a monotherapy of eldepryl, an MAO-b inhibitor. I have done fast walking for one hour, three times a week since 1994. In 2002, my condition had improved so much that I was able to stop taking the medication and have not had to take any ever since. I live a fairly normal life and nobody would ever know that I still have Pd. I wrote a book about my experiences in 2002 and it tells how I went about doing it. I know I am the first to have this happen. But should I keep quiet about it?

    After all, how many patients were very bodily fit when they were diagnosed? how many patients only took an MAO-b inhibitor? Just those 2 facts make my case rather unusual. These two facts plus having given up my high-powered, highly paid job in order to lower my stress levels and adopting a positive attitude have all been responsible for my improved condition.

    Would you not tell everybody about this if it were you?

    John

  • I get so tired of John promoting his book. This is a post biased toward his recommendations, which may or may not work. It seems to be John's little hobby.

    I have no doubt he's nice guy but as for me and my husband (who has PD), we will stick

    with the recommended treatment and trust our doctors before something I read on a post on HealthUnlocked.

  • Hi quirkyme. You are entitled to ignore what I say, but have you tried doing any of it? I have helped a large number of people to improve their quality of life and many of them are on the road to recovery. It took me ten years of exercising and all the other things I have mentioned here before I got to the stage where nobody would ever know that I have Pd. Would you not tell everybody else that this has happened to you? I am not trying to sell you any product, which may or may not work, I am only telling everybody what has happened to me. If you were to read my book it would make it easier for you to understand how I got to where I am. I know no other way to do this.

    I spend many hours every day on HU and answering individual emails. It is a labor of love, which I hope helps other people. The book sales are not worth the effort put into them, but judging by the letters I receive from other patients, I have helped a lot of them to deal with their Pd much better.

    One lady who, with her husband, has been a friend of mine for over thirty years, phoned me over four years ago and told me about her symptoms and asked me if I thought it was Pd. I suggested that she go and see a good neurologist, whom I knew, but who is not a supporter of what I do to keep healthy. He examined her and told her that she does have Pd and he prescribed medication, but did not tell her to do any exercise of any sort. He fortunately made a record of all her UPDRS scores.

    She started doing fast walking immediately and has embarked on several other ways of improving her physical and mental health since then. She has been back to him every six months since then and he has measured her UPDRS scores every time since then. Every time she has been there her scores have improved and he is 'mystified'. I saw her two weeks ago, on a trip up the coast to all the Pd support Groups in that area. She told me about this and I can honestly say, that after three years, I would never know that she has Pd. She and her husband are over the moon. She is a very attractive lady and when she was diagnosed, she had lost all her confidence and had become a bit of a recluse. Now she is all bubbly again and she said I have given her her life back again.

    That is why I carry on visiting the Support Groups and doing all this work on HU and the emails.

    But you carry on with your way of doing things, it is your decision.

    Kind regards

    John

  • John, I read your book after I was first diagnosed and it lifted me from depression and gave me hope. I have followed your advice for 2 1/2 years now and my neurologist is pretty impressed with the results. He Keeps checking my file to make sure I was properly diagnosed since I don't seem to be getting any worse. You are a pioneer and a hero in my book. I no longer am afraid and feel I am i'm going to be fine. God bless you

  • I exercise. I do not see results nor do I share your opinion

  • Hi Royprop. There is exercise and there is exercise. I am genuinely interested in what you have been doing and just how much you are putting into the exercise. Won't you email me.

    John

  • JohnPepper "It took me ten years of exercising and all the other things I have mentioned here before I got to the stage where nobody would ever know that I have Pd."

    Rscott "I have followed your advice for 2 1/2 years now and my neurologist is pretty impressed with the results. ...No one can tell that I have PD."

  • No one could tell I had pd when I was diagnosed either. My point is that it has not gotten worse.

  • Hi Rscott. I have had a wonderful day so far, it is not yet 8 o'clock in the morning and I have been reading of so many people who are now exercising and getting better. I hope that many others will start to do exercise and feel the benefits as well.

    Would you mind sending me an email with your experience and I can send that to lots of people all over the world who need to know that others have benefited by doing exercise. Tell me exactly what exercise you are doing now? My email address is johnpepper@tekomas.net

    Kind regards

    John

  • John, I will be happy to email you with specifics, but I will report here that I just got out of a high-intensity spinning class this morning. I am fortunate that my neurologist started a spinning for Parkinson's class at the YMCA in my town. (It is now being taken around the country due to its success). I quickly graduated from that and am in regular spinning classes now. That is just one of the things that I am doing but it is a mainstay.

  • Jon I tried to email this to you but got bounced back.

    Hi John. Per your request on healthunlocked this is the exercise program

    that I have been on for a couple of years. As I mentioned in my post my

    neurologist started a spinning program at the YMCA for Parkinson's which is

    now expanding out around the country. Because I am pretty young and in

    decent shape I have moved beyond that to a regular hi intensity spinning

    class three times per week. The goal is usually to get my heart rate

    between 85 and 95% maximum. On the days that I'm not in spinning class I do

    a more moderate aerobic exercise like jogging or an elliptical machine. I

    am also lifting weights strenuously 3times per week. I don't always get all

    of my workouts in but that's the objective. I rest on Sundays. The benefit

    I feel has kept my symptoms pretty much the same for the last 2 1/2 years

    since diagnosis. I have more energy and a better frame of mind. I am also

    taking Azilect and on a modified Ketogenic diet.

    Oh yes, and my wife and I walk vigorously once or twice per day for 1 1/2

    miles.

    Thank you for your inspiration and willingness to share your experiences.

    Your book gave me hope and lifted me out of a dark place after I was

    diagnosed.

    Rscott

  • I do not feel that John is promoting his book through this page - he is promoting information about his personal experiences - especially with applying principles of neuro-plasticity - that has helped him increase his bodily activity, and consequently reduce his need for PD meds.! I attended one of John's 2 hour sessions a month ago (in Australia). His talk was impressive but his work with 2 attendees - with PD "paralysis" - was awesome. These 2 people were walking in 15 minutes; and one is walking so fast now, his wife is worried about him falling! I am doing fast walking and making gradual changes to my meds.

  • Hi Mondoug. Were you at the meeting in Sydney? If so, you may lke to hear that the one man wrote to the bank manage to thank him for the donation he made towards my trip to Australia, because he was so moved after the meeting that he and his wife were in tears, after his friend gave him his walking stick as he left the building and walked across the parking lot, unaided, and waved as he entered his car and drove off.

    I have had many exeriences similar to this everywhere I have been. It only takes a change of attitude to accept that our minds are far more powerful than we understand and our Parkinson's journey is not as bad as we once thought!

    I am nearly finished my two-month jouney through Australia and New Zealand and will be back in South Africa on 1st April. I am busy planning my trip to the USA and Canada in July, August and September but still need people to organise these talks in many of the cities I intend visiting. If only they could see how easy it is to get people with walking problems to be able to get rid of their walkers and sticks and walk normally again.

    John

  • Thanks John! We attended the Maroochydore presentation!  A number of people from our Caloundra support group attended and ENJOYED!!  I have just returned from a 50 minute fairly fast walk - am improving! Had read about your program in Doidge's first book! I have been a marathon, half-marathon, triathlon athlete and everyday surfer. Lost most of this since PD diagnosis 3yrs ago.  GETTING IT BACK!!  Thank you!! Am off to a yoga group with an 80yr old master!! Enjoy USA & Canada!!

  • Thanks Mondoug. PLease do not do too much walking too quickly! It can lead to serious injury, even if you hav edone much more in the past.

    Kind regards

    John

  • Yes, yes - I KNOW where your 'coming from' (you post your story every couple weeks on here). The fact that you regularly post your story with the implication being that, because it works so well for you... it will work for EVERYONE is becoming tedious - it WON'T and thinking people understand this. Many formerly happy, stress-free, athletes have not been spared the effects of PD (and reading your book would not have changed things).

    At this point it's tough to understand whether you're doggedly determined to sell your book, or whether you simply can't resist the urge to gloat.

  • Hi Metacognito. I'm afraid I did not see this post of yours until this morning. I can't help feeling that you really don't like me and what I am trying very hard to do.

    I have never said that what I am doing will help EVERYONE. I know it won't.

    I have also said many times that it will possibly only help 30% of patients, but that is still an large number of people.

    I accept your point about other athletes, but at no time have I claimed that what I do will stop people from getting Pd. What I do will definitely help people to live healthier lives!

    As far as my book is concerned I only talk about it because it is a lot easier to read the book in order to understand how I got to the point where I no longer need to take medication.

    I talk to a large number of people each year, mainly at support group meetings. Every single one of those people with walking problems has been able to walk properly, when I have shown them how. Now how can I possibly talk to every Pd patient in this world? The only way I can do it it to write a book about it and hope that others will be able to get some benefit from it.

    Here we have a chicken and egg situation. How can patients do fast walking for one hour, three times a week, when they can only shuffle? If I can manage to get them walking properly again, then they can embark upon the next step, which is building up their walking exercise sessions to the one hour mark. Only then can they start to get the benefit of the GDNF, which repairs the damaged brain cells. Then and only then will they start to reverse their Pd.

    When people talk about exercise, they can be talking abut hundreds of different forms of exercise.

    The only type of exercise that has been scientifically proven to produce GDNF in reasonable quantities in the brain is FAST WALKING. Most older people I know hate walking. They ask me regularly if there is any other form of exercise that produces GDNF and the answer is always NO!

    If I was only in this to sell books I am wasting my time. I might sell an average of 5 or 6 books a month. That does not even warrant all the time I spend writing these articles and answering the questions.

    My object is to teach EVERY PD PATIENT that there IS SOMETHING THEY CAN ALL DO TO IMPROVE THEIR QUALITY OF LIFE!

    Kind regards

    John

  • Hi Dayedist. Thanks for your remarks on the book. I don't know if you have noticed that I have now offered my book at cost price on the website - reverseparkinsons.net - not only is it at the latest cost price but I printed twice the quantity and passed that saving on as well.

    I am seeing what effect this has on sales of books, not that I get anything out of it, but the message is getting to more people this way. If it does not sell better I will either stop or go back to the normal price.

    Thanks for your support.

    John

  • Hi Metacognito. You are a very unhappy person. You are entitled to feel that all I want to do is sell books, but you are wrong. I have given away almost as many books as I have sold. I just want to get the message out there that THERE IS SOMETHING WE CAN ALL DO TO OVERCOME THE EFFECTS OF PD!

    Now you say that I think "because it works so well for you... it will work for EVERYONE!". Well, I have been doing this for 14 years now. I have personally spoken to hundreds, if not thousands of people and I have yet to meet one single person who has a walking problem, who has not been able to walk properly, after I have shown them how! So yes, I KNOW IT WILL WORK FOR EVERYBODY WHO HAS A WALKING PROBLEM!

    Having said that, I know that the greater majority of those people have done nothing about practicing walking properly after having learned how to walk properly. Why would that be? The only thing I can think is that they are either too lazy to do the exercise or they are not really interested in doing anything to help themselves.

    Where do you live? Are you really interested in helping yourself or are you just venting your spleen?

    Good luck

    John

  • Me..unhappy? Wrong. I'm doing perfectly fine thank you. I do, however, have some concern for someone who has nothing better to do than root through old messages to revive a rant already spewed months earlier. You're basically recycling the same drivel about 'teaching' people to walk - something most of us humanoids mastered at about 3-4 years of age. Your apparent notion that 'teaching' that it be done increasingly faster as conditioning improves equates to some sort of scientific breakthrough on your part, however, is delusional. It may be tough to slip a dose of reality past that messianic complex but - fortunately - most hominoids won't require a John Pepper book to conclude the fact that walking briskly and regularly is healthier than parking on a sofa. Now, if you invent a cure for the motivation factor in that anti sofa-dweller equation, that may actually merit a book - cheers.

  • Hi Metacognito. This morning I got a response which came in the middle of the thread, and underneath that was your blog which I had not seen before, so I answered it.

    You seem to be a bit confused with my teaching people how to walk properly. You obviously did not notice that I said, " I have yet to meet one single person who has a walking problem, who has not been able to walk properly, after I have shown them how! That means that they were unable any more to walk properly, which is common among Pd patients. They tend to shuffle and think that there is nothing they can do about it.

    You are obviously well-educated, but you don't appear to know the difference between walking and shuffling. The reason for the shuffling is not because they don't know how to walk properly it is because their subconscious brain is unable to communicate the instructions to the legs and arms, as it has always done in the past. None of us has to think about how we walk, as adults, and we just will ourselves to walk and it happens.

    With Pd, that does not work anymore. That part of the brain is unable to communicate properly with the body. Hence, all the movements that we make without having to think about them are suddenly suspect and troublesome. With me it was my writing, bringing food to my mouth, walking, throwing a ball or a dart and playing golf or tennis. Even 10-pin bowling was impossible. Most of those activities I am able to do consciously, but I still cannot throw a ball or dart and certainly cannot deliver a 10-pin bowl.

    That is because I cannot consciously let go of the object at precisely the right moment in time. With writing and walking I can do it all consciously, that is, thinking of every movement as I do it.

    Now go and do your homework properly and see how that one works!

    John

  • John Pepper, the 'managing stress' part is the most difficult. I have to change my personality which I'm working on doing. One year and a half still med free.

  • racerCP, For me, two years since first Dx and still med free. That is a bright spot in my condition. My goal, to see in the next 3 - 5 years that I have Tremor Dominant Park and not PIGD.

  • Hi RoyProp. I am not acquainted with PIGD. What is it?

    Is yours a resting tremor or an essential tremor. If it is a resting tremor, have you noticed that if you clench your fist the tremor stops?

    John

  • Postural Instability Gait Disorder

    Tremor does not stop when I clinch my fist

  • Hi Racer. I gave up my high-powered job to get rid of most of my stress. That was a serious change in my life but it has paid off, in my opinion. Stress does not cause health problems, in my opinion, but it sure does trigger all sorts of health problems by weakening the immune system.

    Many people tell themselves that there is nothing they can do about certain types of stress, that normally involve family. I say to patients, "What would happen if you died, would the problem go away?" The answer is usually "No". Then I ask, "What would you or anybody else gain by your death?" The answer is always, "Nothing". So my next question is, "Then why not do something about it, now?" The answer to that is usually, "How can I stop supporting my son or daughter, who cannot find a job?" Again, I have to ask, "Then what happens when you have no money left to pay the child. You will then both be broke and the problem is still not fixed!"

    We have to solve problems by being creative. Here in South Africa the unemployment rate is around 40% and probably a lot higher. But those 'unemployed ' people are doing things, other than stealing other people's property. They clean cars in parking garages, they make trinkets and sell them at robots (Traffic Lights) etc. We tend to allow our children to expect to continue living in the manner to which they have been accustomed, but when circumstances change, as they have over the whole world, then our attitude towards problems such as unemployment have also got to change. If the parents have enough money to keep the children for the rest of their lives then they would not be stressed. When people are made to face up to their problems, no longer being able to rely on their parents to support them, you would be amazed how motivated they become.

    I know there are many problems that seem absolutely insoluble, but there are many that can be solved, if handled the right way.

    Don't ignore stress, it is a killer!

    John

  • Well said, John. Now to follow that advice. Of course if I can no longer care for myself then they will have double problems, so it's the "put on your oxygen mask first then help the child." Or something like that.

    Keep truckin.

  • Well-done Racer. I admire people who take charge of their own lives!

    Good Luck.

    John

  • I appreciate your call for selfdirection and knowing you have done it and are doing it is inspiring. a fan.

  • Hi Racer. I need fans like you. Not that I am not used to disagreeable doctors, or should I say dealing with doctors who disagree with me. They seem to be defending their turf, but surely the interests of their patients should be in the forefront of their minds.

    Long before I contracted Pd, I have always fought against taking pain pills, sleeping pills and anti-depressants, among others. However, I would be lying if I said that I have never taken any of the above. However, with sleeping pills for instance, if they did not do the trick for more than a couple of weeks then I changed pills. I would not increase the dosage. The body gets used to any pill and in order to get any benefit after it has got used to the pill we have to increase the dosage. That is where the problems come in.

    There has to be a way of fighting illness, other than taking any form of medication.

    Good luck

    John

  • JohnPepper, it should be some consolation knowing that Parkinson's authorities do now agree that vigorous walking does improve parkinson's symptoms--something you've been promoting for years. Even this article by the Parkinson's Disease Foundation supports everything you say and more: pdf.org/en/parkinson_exerci...

    It explains the changes which occur in the brain with vigorous exercise. Personally I wouldn't want to leave the house and go out in public with my tremors uncontrolled by

    sinemet. So for me it's a combination of both exercise and medication.

    I'd love to see a PET scan of your brain to see how abnormally low your brain's neurons may be, as exercise DOESN'T increase the number, but rather increases the efficiency of those remaining (according to this article).

    But one thing I can tell without a PET or DAT scan--you're as persistent in your efforts to help the rest of us as a man lowering his head and ramming it into a wall over and over hoping to get his point across! I don't think selling your book is your only motivation. Thanks.

  • Hi Marion. THANK YOU! If you lived close to me I'd come and give you a big kiss. Of course Marion could be a man's name and I would be in trouble with my newly-wed wife.

    Seriously, I wish I had hold of this article many years ago, I have quoted the results of Dr Beth Fisher's studies in my book, so they have been well-known for nearly ten years.

    My big worry is that if neurologists know this then why have they not been telling their patients? The only evidence I am picking up now is that some neurologists, and certainly not all, are telling their patients to 'exercise' but not telling them what type of exercise to do. That is as good as telling them to suck eggs. That is exercise! You'd be amazed how many patients try to get me to agree that riding an exercise bicycle indoors for 15 or 20 minutes should do the trick. The exercise has got to be intensive, like walking fast and the studies found that the optimum exercise time was one hour, three times a week. That is the figure that I learned in the 1990's, long before this report came out in 2006 at the 1st World Parkinson's Congress.

    I get no pleasure in saying, "I told you so", but I do get pleasure in thinking that the doubting Thomas' might now agree to doing the right exercise.

    Alleluia!

    John

  • Mr. Pepper

    It appears to me that you certainly do enjoy saying, "I told you so".  Your articles are more than annoying.  Neurologists have consistently recommended intense exercise as useful in controlling PD symptoms for at least a decade here in the US.  Perhaps you should read the literature, beyond your anecdotal description in your book.  The research is very available if you are sincerely interested in educating yourself.  There are many types,of exercise available.  Your method is not the one and only method.  

    I think the most annoying thing about your writing is your attitude of superiority.  You have so often told people that they are not really trying or do not really want to get better.  The evidence is that they do not choose your particular method.  Or more to the point, they do not massage your ego.  

    My suggestion to you, educate yourself and try to just be nice.  It is not necessary to insult people.  In fact, you may notice that the result of insulting others is often resistance.  Perhaps you could add a bit of psychological study while you are reading about the exciting research on PD exercise.

    My hope for you is that you might find some rewards in life that do no harm.  Perhaps developing meaningful personal relationships would help calm you .  Writing these repetitive articles seems to only upset you more.

    Best wishes 

  • Hi Cbauer. I don't know where to start to answer this post. Where have I ever said, "I told you so?". Where have I been rude to others? When you talk about neurologists telling their patients to do 'exercise', that could mean anyhthing from weightifting to running 100 metres. Dr Beth Fisher's report on the affect of  exercise on the progression of Pd shows quite clearly that FAST WALKING produces the best results, and if they aren't saying that then they might just as well be saying nothing.

    Do you consider any of this rude or demeaning?

    John

  •  Cbauer 

    When I read  John's posts I see he is still talking about  10 years back when he attended his first Congress.

    It doesn't  matter how you try to kindly suggest there may be equally legitimate alternative views you will be told otherwise for apparently the only type of exercise that has been scientifically proven to produce GDNF in reasonable quantities in the brain is FAST WALKING. If it is scientifically proven where is the reference? ( see link below)   but it doesn't seem to matter.  People believe not because they are convinced by the facts but for other reasons.  If it is because they want or maybe even need to believe,  so be it.  

    But Just reading this thread should sound alarm bells in people, john had one medication, Eldepryl also used for depression.  He tried sinemet for 3 months but it had no effect so he stopped it.   He takes no medication now after 50 years of PD, his tremor is called Essential tremor and he doesn't have a resting tremor, he has promoted this method for over ten years but has no one else that has reversed symptoms long term.  Last year he reports the neurologist said he does not have idiopathic Parkinsons.   It takes six weeks for his symptoms to reappear when he stops exercise. 

    He certainly doesn't have the sort of Parkinsons I have or that those I know have but all that aside its the continual repeat posting that just becomes tiresome.  

    Scientific references

    ncbi.nlm.nih.gov/pmc/articl...

    This is the paper by Beth Fisher that she presented  At.the World Parkinson  Congress, February 22–26, 2006, Washington, DC;.  And is what  John refers to.  

    Could NOT find one mention of GDNF the results support exercise but do not prove what John claims.  

    The Effect of Exercise Training in Improving Motor Performance and Corticomotor Excitability in Persons With Early Parkinson's Disease

    Beth E. Fisher, PhD, Allan D. Wu, MD, [...], and Giselle Petzinger, 

    Objectives

    To obtain preliminary data on the effects of high-intensity exercise on functional performance in people with Parkinson's disease (PD) relative to exercise at low and no intensity; and to determine whether improved performance is accompanied by alterations in corticomotor excitability as measured through transcranial magnetic stimulation (TMS)

    Participants

    Thirty people with PD, 3 years or more since diagnosis, with Hoehn and Yahr stage 1 or 2.

    Interventions

    Subjects were randomized to high-intensity exercise using body weight–supported treadmill training, low-intensity exercise, or a zero-intensity education group. Subjects completed 24 exercise sessions over 8 weeks and had 5 education classes over 8 weeks.

    Results

    A small improvement in total and motor UPDRS was observed in all groups. High-intensity group subjects demonstrated postexercise increases in gait speed, step and stride length, and hip and ankle joint excursion during self-selected and fast gait and improved weight distribution during sit-to-stand. Improvements in gait and sit-to-stand measures were not consistently observed in low- and zero-intensity groups. Importantly, the high-intensity group demonstrated lengthening in CSP.

    Conclusions

    The findings suggest the dose-dependent benefits of exercise and that high-intensity exercise can normalize corticomotor excitability in early PD 

  • Hi Hikoi. May I correct some errors please?

    I did not attend the 1st WPC in Washington. I clearly state in my book that the information gained on Dr Beth Fisher's address at the  WPC1 was gained from the SPRING Newsletter, written by Michael Kelly, who attended that congress.

    As I have said to you before,the reference to GDNF being involved in the fast walking came for a SPRING Newsletter. I have not kept my copies of those newsletters with all  the moves I have made over the last 10 years. GDNF is not something I created myself and I have searched high and low for the reference you so keenly want.

    I was prescribed Sinemet and Symetrel in 1992, when first diagnosed and was taken off both these meds in 1994, when my neurologist put me onto Eldepryl. I was later put onto Sinemet again by another neurologist in 1991 or 1992, which I stopped taking 3 months later.

    It took me 8 years, doing fast walking and taking Eldepryl before I realised how my condition had improved. I would therefore expect others to take about that time to get to where I am now. I have many people who have been doing the fast walking formore than 4 years and who have testified to their improved condition. One of these paople has UPDRS tests done every 6 months and all have shown an improvement each time. In other words, this lady's condition has improved all the time since diagnosis, practicing what I am telling everybody.

    My repeat postings may be tiresome to you and many others but every time I repeat this news is in different threads and different people read them. Good news will  always be good news, no matter how many tmes you read it.

    You keep saying that I have a different type of Pd to you and many others, but how many types of Pd are there? If you have read my book, which hopefully you have, did you ever try to do any of the recommended things in my book? If you did, tell me what did not work for you. If you didn't then surely you cannot criticise what I have told everybody.

    I don't believe in this theory about different types of Pd. If you accept that the substantia nigra probably contains over 1 billion cells and the chances of any two people having exactly the same cells affeced by Pd are minute. Hence we will all have different symptoms and different intensity of symptoms, or am I being stupid?

    My guess is that many other conditions caused by damage to the substantia nigra can be explained in the above paragraph,

    If your objections to what I am telling people are based on your understanding of Pd and not on having tried to do what I suggest then you have no basis for your criticism.

    If I have a cold and someone suggests that I use a certain medication and I use it and it does not work then I have grounds for questioning the efficacy of that claim, if not, I should not pass any comments.

    Why do you, and some others try to get other patients to disbelieve what  am telling them? Do you have some hidden agenda? Or are you merely protecting other patients from something that cannot harm them, providing that they don't have any impediment that would prevent them from exercising?

    May I ask you a simple question, "What is your gripe?"

    John

  • John

    My gripe as you call it is not about the benefits of exercise, I can't think of anyone who has ever disagreed on that.  It is simply your claims which are untrue  or not proven and the inability to discuss this or have a different perspective from you without you implying that we are wrong.  

    The Spring newsletter does NOT mention GDNF and it is dishonest to claim it does now you have seen it again.

    Beth Fisher did not claim that only fast walking produces GDNF and you have her research paper now so again it would be dishonest to say she did.  

    You write "I Don't believe in this theory about different types of Pd." But In a post above you write "there is no one form of Pd. I have seen articles where it has been described as having up to six different types...."  This is changing your story to suit you!

    May I ask why you imply that people who question or disagree with your claims (note not with the benefits of exercise ) have either a hidden agenda or are unhappy?  Maybe as a diversion

  • Hi Hikoi. I have been up since 2:30am this morning, just to get up to date with my emails. This one is the most important to me. I have looked up the article in SPRING, which was my source of information, and not the report you quote, which came out a lot later.

    It appears that I owe you, and everybody else, an apology. I seem to be doing this quite regularly these days. In the report in SPRING Times No 40. Page 14-16. Dr Haas, a researcher in the Institute of Sport Medicine in Frankfurt University, has reported on tests showing that exercise/movement of a particular type can lead to nerve growth factors (NGF) being released by nerve cells (through activation of muscle sensors referred to as spindles). NGF initiates a cycle leading to enhanced formation of proteins, thereby assisting in neuron survival and growth. Increased physical activity is thus found to protect nerves but NGF release is dependent on the type and range of movement. Exercise carried out while standing have little or no effect on NGF, swimming has a small effect and treadmill exercises give good results. To achieve the best results, exercises should meet the following criteria:

    It was therefore not Dr Beth Fisher who connected the improvement in the patient's condition to GDNF it was Professor Haas. I later found the name of that nerve growth factor (NGF) somewhere else, which I am unable to find at this stage.

    Do you deny that GDNF is associated with the benefit that fast walking has on Pd? Or are you merely pointing out my inaccuracy?

    I am not a scientist or a doctor and I make no claim to be a researcher either. I have Pd and I have managed to overcome many of the movement problems associated with my Pd. I wrote the book in good faith, so that others could get the same benefit.

    It appears that some people don't want others to believe my story and are sewing seeds of doubt as to the truth of my story.

    I am quite sure that the production of GDNF in my brain, when I do HIGH INTENSITY EXERCISE is the reason why my brain has managed to get better. If you don't believe this, then perhaps you can give us all the reasons why.

    John

  • Thankyou for replying John but I can't see why you say I quote a different report.  Athe top It clearly states Spring 40: pages 14-16 which is what you quote and it has the report you quote from, about Dr Hass

    omgaanmetparkinson.nl/wp-co...

    I can't see any mention of GDNF by Dr Hass though you write it is "not Dr Beth Fisher who connected improvement in the patient's condition to GDNF it was Professor Haas".  Prof Hass wrote about NGF, the two terms are not interchangeable are they?

    I wasn't talking about  GDNF production in your brain so wonder why you ask me that question.  

     

  • Hi Hikoi. NGF, I think, is a general term, while GDNF is a specifoc type of NGF. Am I wrong?

    Whenever I talk about GDNF I am talking about Parkinson's disease, which is a brain problem, not a body problem. So the question still stands.

    I apologised for having stated that Dr Beth Fisher used the term GDNF, when it was Dr Haas who used the term and I have subsequently changed that to the specific growth factor, GDNF.

    John

  • Parkinson's affects everybody differently. One of the greatest testimonies I have for intense exercise was when I was taking a spinning class. I worked two jobs and I had spinning class between the two. I had forgotten to bring enough meds for the evening, tremors and weakness had set in. I decided to go to spinning anyway. I found the strength to spin for 50 mins. The tremors ceased and the weakness went away. I went to my 2nd job and it was as if nothing were wrong with me. I was amazed.

  • Hi Chak. Well Done !!!

    I have also been telling patients this, but they have to find it out for themselves!

    John

  • Thanks John. I also belong to a walking club at my job. We used to power-walk through a hilly area three days a week on our lunch hour. Every Mon., Wed we'd walk for about 30 mins. Fridays was called "Step it up Friday." We walked at a faster rate for 45 mins and the path included steeper hills. Our biggest challenge is a hill that leads to a lovely park called Mt. Storm Park. Our club is still active; unfortunately, none of us have the flexible lunch schedule of the past, so we don't walk together any more. Being in a group like that automatically inspired me to keep it going. I walked and spinned for three years. I had begun to notice a significant amount of weight-loss so I stopped spinning. I allowed our conflicting schedules to become an excuse and I stopped walking. I really see a difference in the way I feel. A co -worker said to me one day, "You stopped walking, right? And you stopped spinning?" "Yes," I replied. He paused and said, "I can tell a difference in the way you move." And then he walked away from me. That hit me hard. My PCP said to continue to exercise but just eat more.

    So, tonight I will put together some good music, good food, and hit the Hills of Clifton tomorrow.

  • Hi Chack. How did the walking go?

    John

  • Hi Chak. I remeber reading that post and I think I responded to it. It just goes to show that the lethargy is not because we don't have the strength to perform normal function we just lack the willpower to perform those functions. You obviously are a strong-mided person, just what is needed to oovercome that problem. Well done!!!!

    John

  • Folks I've been reading with interest all your points of view. On the point on exercise, I am a great advocate of this practice. I've always been active but not as much as I am now. The benefits are enormous. Aside from feeling good, the release of endorphins and the proven fact that regular exercise is good for your well being, there are other factors to consider. If you want to be able to look after yourself from a physical standpoint, you need to keep fit. Unused muscles waste and with PD the tendency is to use the more efficient parts of your body particularly arms and legs and you tend not to use the less efficient parts. You need to build upper body strength and the same goes for your legs. Recently a friend of mine (with PD) fell whilst in the toilet and could not pull herself up and her husband couldn't help her get up either and so had to call in the ambulance. The same applies to things like holding your knives and forks, pulling up your clothes, taking them off. I am not saying exercise halts the progress of PD but it certainly keeps you going for a far longer time than if you didn't exercise.

  • Hi Bigmama. You have hit the nail right on the head. Nobody really wants to do exercise. It is a habit that we should all cultivate, in order to make our own lives more enjoyable. Although I have never liked doing exercise, I have to admit that I do feel very good after doing it. I can't imagine what my life would be like if Had had not cultivated the habit of walking every second day.

    Thanks for this input!

    John

  • Exercise doesn't have to be boring or tedious given the choices we have today. You don't even have to leave your house. I play sport on the Wii in the comfort of my living room. Or I learn how to salsa/zoomba, etc logging onto UTube or follow all kinds of exercise regimes which are for free. However I do agree the hardest thing is to be determined and motivated to do something. What gets me going is remembering my mother being bed-ridden for two years before she passed away.

  • Hi bigmama. You are so right. There are many ways to do enjoyable exercise. However, Some type of exercise is more effective for Pd. That is fast walking. Fast walking produces GDNF in the brain and GDNF repairs the damaged brain cells. That is what does most for Pd patients. Getting Pd patients to do fast walking is almost like trying to jump over the Eifel tower. But when we can see what it can do for us, and when we are all aware of what happens if we don't do it, there really is no choice.

    Wii is very good for the brain, but why I do not know.

    As it happens, I am absolutely useless at playing golf on Wii. My scores are atrocious. I have very poor hand/eye coordination, but I manage to live a very good life, considering that I still do have Pd.

    John

  • Hi again John,

    Having PD and from researching more upon GDNF , I am obviously very intrigued by your statement "Fast walking produces GDNF in the brain and GDNF repairs the damaged brain cells."

    Is the first part of your phrase a medically proven situation in fact or an assumption?

    There is a serious reasoning within my research upon to asking this question.

    In furthering my PD Research work, am also interested in any pointers you may have or wish to share (privately by email if so wished) upon the main constituents within GDNF proteins .

    Regards

    Andy

  • Hi Andy. I got my information about GDNF from the quarterly SPRING journal. SPRING stands for The Special Parkinson's Research Group. It was in an article reporting the Address given by Doctors Beth Fisher, Michael Zigmond and John Argue, at the 1st World Parkinson's Congress held in Washington DC in 2006. I have tried to subsequently find the full details of Dr Fisher's address on Google. I think I did find what I was looking for when I searched, "Dr Beth Fisher, GDNF". Try it!

    John

  • Here is the SPRING article but where is GDNF mentioned? 

    It is obviously your writing on here after the Spring report so why have you removed this from your web page?   

    omgaanmetparkinson.nl/wp-co...

  • Hi Hikoi. I have read through this article quickly and if you search you will find several mentions of GDNF in the Story Surrounding GDNF

    I am not aware that this has been removed from my websit.

    John

  • That appears to me to be rather a glib answer John.

    For a moment you had me believing your theory had merit, possibly backed up by science.

  • THE SPRING REPORT - this was once on John's GDNF page. 

     The second talk with the somewhat unwieldy title: The effect of high-intensity exercise using body-weight supported treadmill training on neuroplasticity and functional recovery in individuals with Pd was given by Dr Beth Fisher from the University of Southern California. Dr Fisher has been involved for some years in translating over animal movement research for use in human applications. She spoke about the re-modeling that the brain is capable of, pointing out that, in recent years, a much greater degree of plasticity has been found to exist than was formerly thought to be the case. This applies not only to animal models but also to stroke and spinal injury models.

    Dr Fisher reported on studies of mice using MPTP (a neurotoxin, causing immediate damage to dopaminergic neurons) in which one group receiving MPTP was exercised intensively for 30 days, a second group receiving MPTP did no exercise and a third group exercised without receiving MPTP. It was found that the MPTP group, which was forced to exercise, caught up with the non-MPTP exercise group and, in terms of speed and endurance, could match them after 30 days. This provides powerful evidence of the benefits of exercise in an animal model.

    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.

    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

  • Hi Hikoi. I have just returned from Australia and New Zealand and have got a mountain g emails to respond to. I have looked at my website for the first time this year and must admit that it is not easily found, but as soona s can have a close look I will find it. It ahs not been removed, at least, not by me.

    John

  • Hi Andy. Why did you think I was being glib? The report I quoted came from the British Parkinson's Association in the SPRING Journal. It was a report on the findings of a whole series of studies done by Dr Michael Zigmond and DR Beth Fisher. Dr Zigmond and his team did studies on animals and Dr Fisher then did the same studies on Parkinson's patients. They found that the best way to produce GDNF in the brain was by fast walking, the harder the better. They gave all the results for various types of exercise and the period over which the studies took place. The derails were too voluminous to put here on this blog. I have seen it and have seen the same conclusion printed in the SPRING Journal.

    Why did this seem to be glib?

    My 'theory' does have merit as I have many patients putting it to the test. My problem is that I cannot claim that I am doing tests on the GDNF. I am encouraging patients to do hard walking for 1 hour, 3 times a week and to keep records of their walks. How fast they walk and how far they walk I do not know, as I don't watch them do it. They are ordinary human beings, as we are and if they want to get better and are willing to do the walking, then good for them.

    This past month I have been on a 1000 kilometre trip along the South Coast of South Africa, visiting all the support groups and several individuals. Among them I had the news from one lady, who has known me for over 30 years. She had phoned me 4 years ago and told me that she thought she had Pd. She knew that I have Pd and that I have been able to overcome most of the movement problems. I put her onto a neurologist in Johannesburg, who tested her using the UPDRS scale and recorded all her test results. She has been back to him every six months since then and has been tested each time using the same UPDRS scale. Each time her test results improved, not once did they stay the same or go down. When I saw her I would never know that she still has Pd.

    Would you like to speak to her by email? I don't know if she would be interested in talking to a stranger but if you would then I will ask her.

    Before I left on that trip I had news from another old lady of 88, in Howick, Natal. I saw her and her late husband twice during the period 2003 -2009. On each occasion she had been very positive about her improved condition. In this latest email, she told me that she is now no longer on any medication and she is doing well. Howick is 1300 kilometres from me here in Cape Town. I did visit that support group this year but I did not see her and her husband, I thought they must have passed on. As it happens, her husband has passed on and she did not know about my visit, as the lady who organised it did not know about her.

    I have regular emails from people, from all over SA, who are getting better and are doing well.

    As I have no control over what people do with what I tell them it has no scientific value, but it is very interesting to know that people are using my suggested method of successfully dealing with their Pd.

    I hope this puts your mind to rest.

    Kind regards

    John

  • Hi John,

    I am not doubting your sincerity upon wanting to help folk with PD and Exercise is good for all. I just felt that your reply without direction to specific Articles / Internet pages to back up what you are saying with a scientific edge to them (having searched and only found reference to medical trial with synthetic GDNF and SPRING that appear to be no longer running) appeared more like a slick rehearsed sales pitch grounded upon your individual opinion.

    I would dearly love to read up more upon GDNF occurring naturally within the human body as it may shed some light upon some of my experiences with various attempts to find the illusive key.

    Remembering that some are unable to walk etc., with their particular type and level in PD and will feel as frustrated as I do having to rely upon various medications

    Regards

    Andy

  • Hi Andy. I did all my research on GDNF back in 2006. I put all that info onto my website - reverseparkinsons.net. You will find what you are looking for in 'GDNF'. You may care to also look at MAO-b inhibitors and 'Walking'.

    Try the following websites relating to Dr Beth Fisher:

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    spring.parkinsons.org.uk/im...

    Kind regards

    John

  • My other half had had parkinsons for nearly 4 years, the last year dementia as well, with all the side effects, the shaking, pains in stomach, head pains, breathlessness etc etc, now undergoing testa for his heart. If I were to tell him what you suggested, how do you think he would react. we have to think positive about the medication, that it helps, what with the parkinsons pills, brain pills, anti-depressant pills, how the hell is he surposed to take serious excersise, its all I can do to get him, to make a cup of tea, we walk, yes with an aided walker, slowly!!!!!!!! have you got parkingsons ?? or heart problems let alone brain problems, if you have then I sympathise with you carer.

  • Hi Skirtybertie. Yes I do have Pd. The whole point of my taking part in this website is that I have been able to overcome most of the movement problems associated with Pd. I sympathize with you and understand your bitterness with what hand life has dealt you. I would never expect your 'better half' to do the exercise I am trying so hard to encourage others to do. You personally might think about doing exercise for your own future, it can't do you any harm, unless of course you also have health problems that prevent you from doing so. I wish you both well.

    John

  • Thank you John, and no sorry I am not bitter, life is to short for that. My 1st husband died when he was only 47 and the children were 16 and 12, so yes life deals bitter blows. My partner's wife died fron cancer so we are 2nd time around. He is 72 now, I on the other hand am 67 I work voluntery in our local hospice shop 1 day a week, my me time, when I can relax and chat. I have arthritus and have just had my knee replaced but I am up and about again, and I can drive again wonderful.

    Yes at times I feel angry that it all against me but I try to stay positive, whereas my other half does not his cup is always half empty, and his daughters arn't much help.

    My cup is definately full, I love aqua-fit which I am going to after christmas again, gardening is a great passion, and we are going to try and go away once a month for a few days, because that is when he is alot more positive. His shakes are definately worse, but if we gets stares which happens especially the nudging - i just say no problem it's just parkinsons. There alot of people out there who do not know what it is.

    So sorry if you thought I was a little bit off, but at times its easier to put pen to paper so to speak, and get it off your chest.

    We used to go to our local parkinsons group, but he began to imagine that I was having affairs with the men there, another side effect so that is very hard to deal with. Had to look for frogs the other day is his room, at least I managed to make him laugh about it.

    so happy christmas and keep taking the pills

    sue

  • Hi Sue. You're on the right track! Make the most of life, it has a lot to offer. The old cliche is true, what you put in is what you get back out. If you put nothing into life you get nothing back out!

    It sounds as if your husband is hallucinating. If so, it could be the side effect of medication. Your doctor should be able to tell you which one. If your husband takes any medication that does not have any positive effects or has bad side effects then stop taking it, in consultation with your doctor. No Pd medication does anything to stop the progression of Pd, so if they don't mask any of the symptoms then they are not doing anything to help your husband.

    Getting quality time together is a good plan. Try everything you can to avoid STRESS!

    Kind regards

    John

  • Hello john, been off line for awhile, my husband now been off all pd meds since 12-2012 after being on them for eighteen years. Won't go into details as have posted previousl, I had to make the decision with no regrets, for us it came down to me having to use my own head in this decision, in doing so with a lot of prayers. Kind regards, patti

  • Wow Patti. I would like to hear more about this from you. If you don't want to put it on this website then email me at johnpepper@telkomsa.net. I am sure that lots of other patients would like to hear about someone coming off meds after so long on them.

    John

  • John, I walked about 15,000 miles over a fifteen year period but still came down with PD and resisted taking the meds and when I did I refused to take the quantity my doctor wanted. As a result I never could get back into an exercise routine or program that was doable due to my failing health. That all changed with my last large increase in meds two years ago. I knew this would be my last opportunity to get serious about exercises. While I wish I could have done this without the meds I couldn't. So far I'm still maintaining an exercise program and for my walking regular strenuous walking as you recommended is extremely valuable.

  • Hi Coblrman. I don't know if you have read my book or not. In it I said that my 1st symptoms started in 1963 and I was only diagnosed in 1992. I asked the question, "Why did it take so long to be diagnosed?" During that time I did a lot of exercise including jogging, regular Gym, swimming and plenty of brain work. But that did not stop the Pd from progressing, although it obviously slowed that progression down.

    Then in 1992, after the diagnosis, I gave up the high-powered job and increased my gym workout to 90 minutes every day. The rest of the time I sat in my chair listening to music and sleeping.

    over the next two years my Pd continued to get worse, as I watched the piles of weights on those machines getting smaller and the settings on the treadmill and bicycle getting lower. Then I stopped going to the gym and accepted the fact that I had this progressive disease that was going to make me so rigid that I would not be able to get out of bed.

    Then my wife persuaded me to join an organization here called Run/Walk for LIFE. I started doing fast walking for 20 minutes every 2nd day and slowly built up to 1 hour every 2nd day. After 4 months, I my times had improved from Over 10.5 minutes a kilometre to under 9 minutes a kilometre.

    That was the 1st time I had experienced an improvement in my condition since that 1st symptom started in 1963.

    I carried on with the Run/Walk for life and in 2002, my condition had improved so much that I was able to stop taking the Eldepryl medication. it has stayed that way ever since and at the age of 80 I still live a perfectly 'Normal' life, free of any Pd movement symptoms.

    I gave my ideas in the book on why I thought this had happened to me and came up with the following conclusions: 1. The fast walking had obviously had a major influence on that outcome; 2. The Eldepryl, which was the only medication I took during the time I did the walking and which was a major factor in this; 3. I had given up the major cause of STRESS in my life by leaving my job; 4. I occupied my mind with writing computer programs reading interesting books and doing difficult Su Doku puzzles, which kept my brain very busy; 5 I adopted a positive attitude towards my health issues.

    More than that is anybody's guess.

    John

  • John, two years into this disease and I made the decision to change lifestyle and consciously live. I exercise at least two hours most days, walk about 30 miles a week, five miles weekdays and more weekends and my tremor is about the same but not noticeable in social situations unless I am stressed, which I am learning to manage. I still have to work on my concentration and project completion but I am confident I can do it. I am now reading Norman Doidge's book, THE BRAIN'S WAY OF HEALING, in which he has a chapter on John Pepper... haven't gotten to it yet. Bless you for your message.

    I hope your book has gotten all the attention it deserves. A Fan

  • Hi Racer. I am criticized by some very learned and knowledgeable person for thinking that "one size fits all". I don't think and have never said that. I am well aware that we are not all the same, otherwise he would have got off his butt and started doing fast walking long ago. But he is different, and good luck to him. For the rest of us, we are free to take advice or leave it, not knock it.

    I want to emphasize that most people need to rest for a day, after doing meaningful exercise. It is not a given that we all need to do that.

    I have personally injured my feet and leg muscles on more than one occasion, even though I am fairly fit, and have had to stop walking for up to 4 months at a time, each time that has happened. On each of those occasions, my Pd symptoms started to return to previous levels.

    So that does not mean you have to listen to me. Make your own choices.

    Good luck

    John

  • John I asked a question about your return of symptoms when you stopped exercising. It got lost somehow but I thankyoufor your message. I think others would like to read your reply too so maybe you could post here.

  • I have looked in this thread twice from top to bottom but cannot see your question in it.

    Let me answer your question here:

    I have had to stop walking several times over the past 20 years or more and every time it happens I get the same chain of events:

    1.At around 6 weeks I start to become more clumsy than usual. I bump into doorways and kick the foot of the bed, knock glasses over etc.

    2.My constipation becomes much more apparent. I am sure that doing no exercise is responsible for that.

    3.My sleeping gets worse. I only normally sleep for plus minus 5 hours a night. At this stage of non-walking it gets down to as little as 2 hours a night.

    4.My speech becomes confused. I say words that are not words at all but a jumble of other words. It also becomes slurred, more often than not when I am under stress. Talking of which my stress levels increase quite dramatically, probably due to the lack of sleep.

    5.I become very cross, at the drop of a hat, for no real acceptable reason. I call that mood swings. I am normally a very calm person, hyper active but not highly excitable.

    6.I lose my facial expressions, and take on the Pd mask, without being aware of it.

    7.My swallowing problems become more frequent and I have to concentrate hard on my eating.

    8.I walk badly, mainly indoors, dragging my feet and tripping over my shoes, (especially running shoes)

    Does this answer your question?

    Kind regards

    John

  • John, you are certainly correct, one-size does not fit all and PD especially manifests in different forms in different people and it may not all be the same disease. I am a creature of habit and whatever I do each day I continue to do. When I miss a day, which I do once a week, it is a bit more difficult to get back. So I've been daily walking 5 or 6 miles with my buddies who have done the same for 20+ years. Having PD so far has not interfered except I am a bit slower but then again I'm a bit older. It is comforting to know of people with your view about meds and a blessing to be able to do without meds yet. Not everyone is in that blessed situation. Meanwhile I will do movement for my movement disorder condition as long as I'm able.

  • Hi Racer. Although I admire your walking habits, it rather scares me! I have been taught, and it has been my experience, that walking hard every day is not good for our foot and leg muscles. But if you are so fit that you can do it still without injuring yourself you will not get the same GDNF benefit as you would if your on;y walked every 2nd day. I am not a fitness expert, so if anybody who is wants to give her/his opinion here I would appreciate it.

    On the other hand, if you are not walking at your absolute maximum, less a little bit, so that you can still speak, but only with difficulty, then you definitely won't get the GDNF benefit and that is what you are exercising for.

    Good li[uck!

    John

  • John, I have previously written to you about my exercise schedule of fast walking 5 or 6 days a week at the rate of 5 miles per hour. I know you questioned the wisdom of frequency of fast walking preferring a 3-day a week schedule at heart rate level of over 100. I recently used a heart rate monitor and find it is difficult for me to get to 100+ or even 100, I would say only 20% of my walk is over 90. My resting HR is 46 and while exercising it's about 70 or 80. Would you suggest I reduce the mileage and concentrate on intensity to get maximum GDNF benefit or because I start out with so low a HR it is understandable that I have such difficulty getting to 100?

  • Hi Racer. I have been unable to respond to any posts for over a week. I don't know why this happens every now and then.

    I will try to answer your questions to the best of my ability.

    Like you, my resting pulse rate is in the low 50's and I struggle to get my pulse rate over 100. I don't try to do that as we are not all alike and can't all get there. I am not a PT instructor nor a medical person, so cannot give you a professional answer, but as someone like you, I have been able to get the desired effect by walking at just short of my maximum level.

    My understanding of the GDNF is that 1 hour at just short of our maximum, every 2nd day is the ideal amount of exercise every week. Sundays are rest days.

    Kind regards

    John

  • Thanks for your quick response. I am reducing number of days fast walking to four a week and participating in group exercise classes. My target HR is 80 to 125 based on age so I will work towards intensity. HR doesn't go more than 90 in group aerobic activities. I will buy your book soon. Currently reading Doidge's book, THE HEART'S WAY OF HEALING, amazing stuff and written with an active view towards disabilities or diseases. Since he spends a chapter on your alternative 'cure' I'm sure you have read it. I would like to explore the electrical alternatives being worked on in Wisconsin with the PoNs machines and will have to do the research on how to connect and be considered. Right now my big issue is insomnia and the concomitant fuzzy daytimes. Oddly I am not too tired to exercise but too fuzzy to concentrate.

    Thank you again.

  • Individuals treat their and perceive health differently. There is also a bit of experimentation and seeing the results or outcome of decisions. Educating oneself through solid reliable sources, good medical advice and guidance, a support system that can also provide feedback, willingness to make changes as you adapt, and following your gut instincts can guide one to the best combination of treatment options as the years progress with this condition. Best wishes.

  • Hi Everybody. I appear to be guilty of being short on scientific proof and long on assumptions. Nevertheless, the proof of the pudding is in the eating, as they say. I spend all my available time talking to people about Pd, writing to people about Pd and thinking about Pd. I get up most days at around 5am and get stuck into my emails, which are quite numerous. Sometimes I get up as early as 1:30am and don't get back to bed before 11pm, mainly because of Pd work. I have to admit that after 9pm I am a bit ragged and have to do things over again.

    Maybe, sombody else will investigate my claim that fast walking creates GDNF in my brain when I do the fast walking, because there is no other reason, that I can think of, which has changed my whole life around.

    I don't need someone who wants to disprove my 'theory'  I want someone who wants find proof of my theory.

    If it only happened to me, I would be prepared to accept that I might be wrong, but as it works for everybody who is prepared to put in the effort into doing the walking, I feel much more confident that I am right in my assumptions.

    I can understand that many people in vaious walks of life would stand to lose a lot of money if what I am suggesting becomes the standard way of dealing with Pd, and they will put every effort into disproving my theories, but we have to accept this as part of life.

    We all have to make our own decision about whether to believe what I am 'preaching' or treat it as codswallop!

    John

You may also like...