Pd only affects the movements that are controlled by our SUBCONSCIOUS brain. When I say, "Only", most of our movements are controlled by our subconscious brain. We drive our cars, subconsciously! We don't consciously think about how we are driving we just have to think about where we are driving and at what speed and when we must stop. The same goes for walking and writing and most other things.
What I have found is that when we consciously control any movement, including walking, Parkinson's does not interfere. Yes! We don't freeze when we walk consciously. So we don't need medication to stop us from FREEZING!
We don't need medication to help us to put food into our mouth!
If we don't take medication, we will never have DYSKINESIA!
Come on everybody, we can all overcome Pd by simply USING OUR CONSCIOUS BRAIN TO CONTROL OUR MOVEMENTS!
WE DON"T NEED MEDICATION!
Written by
JohnPepper
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We have 4165 PD specialists here. You were probably hoping that a Neuroligist specializing in movement disorders might be around. I think there probably are some but they mostly just read and learn or comment without defining their qualifications.
Hi GymBag. It had never occurred to me that doctors would be reading articles on this site. My experience with neurologists is that they don't take any notice of what patients have to say about health problems. What do patients know?
I gave five neurologists a copy of my book, after it was first published, and not one of them came back to me to discuss it. But they did go public with the statement that, "He does not have Pd, therefore he never had Pd, because there is no cure for pd". They did that without even taking the trouble to examine me themselves!
Does that sound professional to you? If I were a neurologist I would want to know whether this man really does have Pd or not.
As a result of that experience, I think that what has happened to me is not in the interests of the medical profession, and they do not want people to believe it. This is very sad, but that is life!
The conscious mind tends to focus on 1 thing at a time. So while concentrating on consciously walking you can't do anything else, like watching some wildlife or looking at your watch etc.
Anyway its not true that I won't freeze when walking consciously. I freeze any time even sometimes when my medication is at its peak, that is when I approach being normal.
Hi Pete. Yes it is true, but obviously we have to maintain our concentration. When my mind wanders, while doing my bi-daily walking, I immediately feel and hear that I am not concentrating, because my right foot drags along the ground and makes a scuffing noise and I tend to trip. I have been using my conscious brain to walk since 1998, That is 16 years. In that time, I have fallen a few times, but not with any serious injury. My condition, as you know, is as if I never had Pd, but I still do have it and I still do occasionally trip or fall. I would rather be like this than hooked on medication.
Agree with Pete-1. When I see the neurologist, I perform tasks much better than usual cause I'm focusing on them. If my brain is active doing something else like speaking or typing this post I have tremors. Therefore it is difficult to focus on my movements and still enjoy doing other things. Has any one tried hypnosis or meditation, where you might be able to train your subconscious to focus on reducing tremors?
Many of the folks I have talked to experience the same ability to perform better in the doctor's office. My neuro and I think it is the result of an adrenaline rush. I have often had similar experiences when stressed. It was great when taking college admissions tests, etc. i consistently scored better than I would have. Expected in a less stressful setting.
Hi DeanGreen. I am very wary of hypnosis. I could never allow another person to take over the control of my body. If you try it, let us know if it works,
Hi DeanGreen. I have not heard of anyone achieving this. However, I do know of many people learning to use their conscious brain to control movement, with great success. Purposely try it, you might be very amazed at the results. I know that something that costs nothing, probably isn't worth anything. I hope that my advice in this matter is worth a great deal!
Hi Pete, I am with you in that I have been using my conscious brain to move my frozen arm and lift that foot that would drag if I didn't control it. I racewalk about 4 to 6 miles a day plus other exercises but...but....PD affects each person differently and affects the same person differently at different times so I have respect for all who use medications. I am sure they use them responsibly and as sparingly as possible. I have some issues swallowing and there I use my conscious brain rigorously, also with loudness of voice. But my doctor tells me I am early stage and if and when I need meds I will take it under consideration. Nine months ago diagnosed, 10 years of foot drag and arm stiffness which was probably also PD and 1 year 8 months since tremor. Still fighting the good fight. The one thing I have trouble with is stress and fulfilling obligations of wife and grandma, otherwise I can keep the stess at bay.
Congratulations to you racerCP! Fighting the good good fight without meds! Me, three years on meds, regrets, trying to reduce not an easy fight for me.
Hi Puddlejumper. You can still do fats walking, even if you are on medication, just don't put too much reliance on the medication and try to reduce it as you get fitter.
Hi RacerCP. Please think carefully about walking every day. I am assured by health professionals that muscles need a day to recover from hard exercise and if we exercise them every day, they eat themselves up and get smaller. That is counterproductive. I have injured myself doing the same thing and it really isn't worth it!
Hi John, again thank you for your advice. I have been racewalking daily except for Mondays for about 20+ years. Racewalking is what I do from 6:30 to about 8 a.m., what I consider dead time when everyone is asleep and not willing to put up with me. In a way I don't consider racewalking 'exercise' more like how I start my day because I live next to beautiful Central Park in Manhattan and before starting my many years of busy days shoving and scrambling for a space I could relax. My big concern was that PD would interfere with that meditative time and so far it has not, although I am a bit slower, which I blame my age, and maybe I shouldn't. What I consider 'exercise' is the other things I do like my Zumba class or bootcamp class or anything else. I have had the tremor for about a year and a half and was diagnosed 8 months ago by a fairly reputable movement specialist at Mt Sinai who said to take a wait and see approach and return in 6 months. My tremor has on and off days, some days barely there and others may be noticeable to others, although rarely. Looking back I had a stiff right shoulder which I was kind of holding while walkig and a slight drag foot on right side for about 10 or 11 years before tremor, which did not prevent me from doing a NYC marathon in 4 hours and 20 minutes which is not terrible for a walker.
I love what you said about the conscious mind trying to inform our autonomic nervous system as to what to do..."I am boss". I find that comforting and have been practicing that as well. Here's hoping I can stay off meds and manage, hopefully as well as you have. (I also mentioned an MAOB inhibitor benefits to my neuro but he didn't think I should start yet. Keep on contributing to this website.
Hi Racer. I did not see this post of yours. Thanks for your input. I do not recall trying to take control of my autonomic nervous system. I don't think that is possible. I do think that exercise, generally, does help the autonomic nervous system, like with constipation and keeping the chest clear, but in both cases I intervene with the odd dose of laxative for the constipation and physically expressing the phlegm out of my chest by forcing air out of my lungs, either bypassing the larynx or via the larynx. If I don't do this, I pick up infections and have to take antibiotics, which I hate having to do.
Perhaps I used the wrong words for trying to control things like swallowing, which I never gave a second thought to, or my posture in space, not to lean back but remain upright in space. All this is so mild that just being conscious of it makes me do it. I agree about the constipation, I massage my belly at night right to left and that helps but I'm all right there and insomnia, I don't 'naturally' fall asleep but have to talk to myself which many times works. These are all conversations I never had with myself. That's fine with me because I'm getting to know myself better and I enjoy the feeling of control or imposing my will on this mind and body.
Hi Racer. Yes, there are so many things we have to now be conscious of. I have a built-in alarm clock, commonly called 'Wife', but I prefer to refer to her as 'Sweetheart' She tells me when I am leaning forwards and my shoulder are hunched and my head is pointing to the ground, those sort of things. I tell her to mind her own business and she gives me a loving kick in the shins. We make a game of this interaction, otherwise it would become monotonous.
I don't know if you have seen my posts about constipation. I find that I cannot get my sphincter muscles to relax, when I need to defecate. So I take a few sheets of toilet paper and gently massage the anus with two fingers. This relaxes the muscles and I immediately feel the motion coming down. Sorry to be so graphic but we are all over 21.
Keeping the chest clear is a very annoying thing for my wife. I have to keep it clear by forcing air out of my lungs with sharp contractions of the chest muscles. I have to do it both direct, without going through the larynx and also going through the larynx. This is most important.
Thank you for the practical advice. I really appreciate it because swallowing is a conscious thing I do now. Bob, a fellow knowledgeable participant suggested I put my head down when I swallow liquids and that has been foolproof.
Best Luck and hope your shins are not too bruised.
Hi Racer. My shins will survive but my sanity is still questionable.
I have spoken to many people about swallowing and many of them believe that we should throw our heads back, when we swallow. That is about the worst thing we can possibly do! It almost throws the contents of our mouth into the windpipe, hence some of the choking. I'm not joking!
I have not heard of putting my head down, but I will try it.
I have found that when I am not concentrating on what I am doing, when I am eating, then I often try to talk, whilst eating, and if that is at the time when I am about to swallow, then guess what?
It seems impossible to think that we might try to speak as we are about to swallow, but at the dinner table, when you are with your family or friends and you hear something that makes you want to respond, then anything can happen.
So there is another instance where it pays to remain conscious of what we are doing!
Thanks again for the advice few doctors can offer. If you are in USA a great Thanksgiving. Hopefully I won't swallow more than I can fit into my frame.
RacerCP speaking of sleep, I once read an article about insomnia that stated if you count in your mind while vlsualizing each number in color, your mind can't wander as it will be too occupied with the visualization and mental counting. Supposedly it occupies your mind so you won't have other thoughts intruding. I guess this works best for people who have 'a lot on their mind' but I have tried this and it does make you relax and fall asleep.
Hi Racer & Marion. Whatever works, when you are doing something to get you to sleep, stick to it. Who knows why it works? But if it works, go for it. I have tried counting backwards from 10,000 down to 1, that sometimes worked, but not always.
I found that when my mind had a nagging problem, sitting there in the background, that would not go away, I had to ask myself, "If I don't sleep tonight, will it help this problem?" the answer was always, "NO". I then reasoned with myself, "Can I possibly come up with a solution, here in bed, that will make this problem go away?" The answer was always , "No". So why was I wasting my time allowing those thoughts into my mind? Somehow this reasoning enabled me to over-ride those negative thoughts and concentrate on whatever method I was using to get me to sleep!
Why don't you do some online research on the difference between smooth muscle and striated muscle. The former runs our inside organs and runs automatically (our intestines, etc.) Striated muscle we have control over. There's a marked difference between the two and the connections to the nervous system.
Hi quirkytime. I guess the answer to this is that I am not an academic and have never heard of striated muscles. I can only tell you how I overcame my walking and other movement problems. I had not yet learned how to use the internet, when all this was happening. Whatever woo-woo means, I assume it means a load of codswallop, it is real and it works. If you do have a walking problem and you analyse that problem you will then be able to address each individual problem in turn and rectify each one.
My husband has overcome his walking problems with the encouragement of his PT at Boston University. His shuffle turned into solid, fast paced walking. It was still all in there from his past. His brain had to find alternative pathways to activate his muscles to move him that fast. It's like a reserve. Tap into it. Striated muscles are under one's conscious control. Those muscles, in our internal organs, for example, are not under conscious control. This is part of the autonomic nervous system. So to say 'unconscious' is not correct, medically. It's just a way of describing our movements.
We've been able to find a 'work around' for many things. Eating was a problem, shaving, grooming, getting dressed. All have improved markedly now that he's on the right medication regimen. It's like going back in time. Yesterday he saw his PCP who saw him walk into the office and he had said to himself 'that doesn't look like Will'. It's very heartening for us!! But it takes effort. Use it or lose it. Walking briskly every day. The right meds, diet, wellness thinking, being in a PD group, engaging with friends, a stress free environment here. It's our new life now and it's a good life. He's on a plateau and we're trying to keep him there by dealing with small changes that come up.
Never tell me that someone with PD can't regain ground, because he has!! But it takes diligence and perseverance, a trusted medical team, hope, the full suite of all those things that help. Exercise, stretching, being active during the day (not sitting too much) are THE key. I lead a PD group and some people are using a theracycle. We can't afford that kind of money but we can afford walking shoes!!!!
Hi, JohnPepper, I always enjoy your posts. There is, for me, a huge difference between not being able to walk and freezing. Altho I get freezing episodes, more often I just simply cannot walk. I then concentrate and try (1) marching (like in a parade), (2) putting my heel down on the floor first like you recommend, or (3) just saying to myself, right, left, right, left as I move my feet. Sometimes I feel like the more I concentrate, the worse it is. If I can't walk at all, my husband says to me: STOP, RELAX. Now take a big step. This seems to work almost every time. I would do anything to stop dyskinesia! I HATE it. But I seriously cannot stop my meds because they help my walking and so much more. Without meds I would be so weak that I would not be able to get out of bed. My toes on my right foot curl or do some crazy thing that could send me to an insane asylum. The fatigue I feel sometimes would keep me from doing anything outside of this house. I have good days and bad days. On the bad days I cannot move. If I take my pills and eat protein at the same time, I may as well just throw the pills out the window. They don't work. On good days, I can walk about 3 hrs out of the day. I take as little of the meds that I possibly can. When I can''t walk, I slide my feet along the floor. I actually shop for shoes to wear in my home that allow me to do this. No rubber soles, instead, shoes that have plastic soles so I can slide my feet along the wood floor. Doesn't work on carpet.
Anyone diagnosed with PD should try your methods first. The least amount of meds we can get away with, and the more exercize we do, the better off we are.
Hi Jocee. I hear where you are coming from. I spoke to a patient last week and he is taking 8 sinemet every day. he gets serious dyskinesia from doing this, so his doctor gave him 3 pexola pills a day, which cause him to have serious hallucinations. I suggested that he turns the clock back and stop the pexola and take enough sinemet to avoid the hallucinations. He is now talking to his neurologist about it.
He was able to walk around the hall with me, so fast, that his wife could not believe it. He had such bad dyskinesia that he could not hold his head still, until he started to walk. Strange!
Eva G, When I am unable to pick up my feet and walk, most of the time I can slide my feet as though I am skiing. It works best with slippers, (no rubber soles) and a wood floor. I use this method a lot.
I bought your book for my husband and I to read when he first was diagnosed with Parkinson's. He does not have your fervor to connect mind, body and spirit but I will once again try to work with him on it. He also does not refer to the book of illustrated exercises for Parkinson's that I ordered, so noiw we are beginning another round of physical therapy as "inspiration." Half of my day is thinking about and preparing meals that he can manage, the other half is monitoring and convincing him to move around more and to take an interest in his progress. He's got the pill schedule down pretty well lol. But thank you for the reminder...sometimes I'm the one who needs a push!
Hi Redread. I have an idea that your husband is in denial. He does not appear to want to do anything about the Pd. Taking pills is easy, but a waste of money and time.
Dear John, I always look forward to your posts...I love your positive energy! I was diagnosed in 9/2013 and I'm staying away from meds and preferring exercise instead. I firmly believe that exercise with a whole foods plant based diet is the way to go. There are different types of PD but I'm not an MD so I can't explain but they affect different people differently. Positivity is very important. My husband told me to act as if I didn't have PD so I try to 'fake it til I make it'. Keep your encouragement coming! BTW your book was one of the first that I read when first diagnosed. Much thanks!
Dear John, I always look forward to your posts...I love your positive energy! I was diagnosed in 9/2013 and I'm staying away from meds and preferring exercise instead. I firmly believe that exercise with a whole foods plant based diet is the way to go. There are different types of PD but I'm not an MD so I can't explain but they affect different people differently. Positivity is very important. My husband told me to act as if I didn't have PD so I try to 'fake it til I make it'. Keep your encouragement coming! BTW your book was one of the first that I read when first diagnosed. Much thanks!
Hi Nourilo. Thanks for your encouragement! Keep up the positivity. What exercise do you do? I hope it is fast walking! When we walk fats, we produce this GDNF in the brain and we start to repair the damaged brain cells.
Good council.........mind over matter. The only thing is " easier said than done ". I have overcome freezing at doorways by "sizing it up as I approach it" an think about stepping through it. Keep up the advice
Hi Ray. When it comes to movement problems, Pd is very simple to understand for the layman. In a small part of the brain, which acts as a telephone exchange for messages being sent from the subconscious brain to the body, there is a shortage of electricity. This means that not all the messages get through to the target. We don't consciously tell our legs to move, we will them to move, while the subconscious brain does all the work telling which muscles to work and in what order. So when you get to a doorway, the messages stop arriving at the feet and legs.
If you consciously take over the action of walking, you bypass this small area of the brain and the message gets through all the time. At least, that is my experience.
I have personally walked with hundreds of Pd patients with a walking problem. There has not been one single person, male or female, who has not been able to do this, immediately. I have taken people out of wheelchairs, and in one instance, out of bed, and within a minute they have been walking around a hall at a fair pace, not only surprising themselves but everybody watching them. It is so easy! Why is this? I hold their arm, while doing it. In this way, they are no longer worrying about falling, which is the biggest problem. While I tell them to just think about planting the one heel at a time, firmly onto the floor in front of them, they are able to concentrate on what they are doing and it woks like a charm. I cannot do this to everybody in the world, not this year anyway, so I have written it all down in my book and hope they will all read it.
When you are sizing up what you are going to do in the doorway, you are, I think, concentrating on the movement, instead of willing yourself to walk.
Kind regards
John
Why did you not tell us this before, why keep it a secret?
Kidding
Now seriously John. You may be 100% correct for your situation, your PD. You are correct only partially for mine, but probably ,more than I have given your theory credit or applied it. I can walk fast in short bursts of say 100 yards if I really concentrate, but I must rest in between to build something up ( not sure what that something is ) and I am frozen leaning on my cane , until ready to go again for another burst. If I can build up enough stamina to do this for an hour then I can barley move afterwards but a few hours later I feel better and the next day the PD is less severe. But some days I just can not make one burst of speed no matter how hard I concentrate. I suspect proper training would greatly increase my ability and I am trying stationary bike. I do not have Dyskinesia . I am slow , freeze, have very poor balance. and hand eye coordination, have some tremor at rest only and get tired very easily. I think we could all exercise much more to our great benefit, but we can not all as some great man once said pick up our beds and walk.
SOME OF US DO NEED MEDS. Anyone thinking about going off your meds. contact your Neuro first and if still determined go off then do it very very slowly and have some one else monitor you.
Hi GymBag. You obviously have not read my book. I have no intention of trying to persuade everybody to buy my book, but I have tried to pose questions to other patients, which bring to light all the factors that have, together, changed my life around. In my book I tell everybody how I went about turning my life around. In this story I tell everybody to start doing walking for a maximum of 10 minutes. If you are unable to do it for 10 minutes then do what you can. Don't do it every day, because the muscles need a day to recover. Do that time every second day for the first two weeks, then increase that time by no more that five minutes for the next two weeks. Then every second week, add on another five minutes. After 22 weeks, you will be doing one hour, at YOUR FASTEST RATE. Don't lose heart if you can only walk one mile in 20 minutes. It will improve, as you get stronger. Don't compare yourself to anybody else. You are YOU!
The most important thing is to record every walk you take. Write it down in a book with the time and distance covered. When you see how your performance has improved, and it will, your confidence will star to come back, and that is the best thing coming out of all this!
It took me 10 years to get to the point where i am now.
As far as medication is concerned, just remember that it does nothing to slow down the progression of your Pd. If you know that the medication you took from the start, immediately helped you, then continue taking it until you don't need it anymore. If you, like others, have been taking more and more medication, just to achieve the same effect, or you have been given more medication to overcome the side effects of the first medication, then stop and take a look at what you are doing. I agree that you should not just suddenly stop, you have to do it slowly. I know many people who have reduced their meds successfully and some who have come off completely. As your body gets stronger and you are able to start producing GDNF in the brain, you will start to reverse your Pd. That is my experience, which is backed up by Dr Beth Fisher's report given at the 1st World Parkinson's Congress held in Washington DC in 2006.
You can read all this in my book, and a great deal more.
Hi cshamb. Have you noticed that when you clench the fist of the hand with the tremor, the tremor stops immediately? clenching your fist is a conscious action. You might find that you drop your conscious attention, while clenching your fist and the tremor returns. That returning tremor is different to the normal tremor because it affects the arm and not the hand.
The easiest way to know you are using your conscious brain is when you are walking, and you can see that one of your arms is not swinging; all you have to do is consciously swing that arm right up into then air in front of you. It is so easy. You will find, as I did, that when you know what you are not doing properly; you can consciously intervene and do it properly.
Try it!
John
John and Pete
I don't know what the capacity of the conscious brain is but I do know that when I walk consciously I have to concentrate on my feet, on swinging my arms, on looking out for uneven patches of roadway, on keepig my shoulders straight on traffic or other roadusers.
I have been using Transcental Meditation daily for many years ( remember the 60s the Beatles the Maharishi). This form of meditation doesn't require concentration on one fixed image or idea but asks you to let your mind float freely while the mantra goes on in the background.
My main problem is a left side tremor. If I lie down and relax my whole body I can get some relief, but you can't live in a horizontal position.
Hi Grey-stones. I have not tried Transcental Meditation, but I have tried to meditate, when trying to get to sleep. I just cannot persuade myself that chanting some mantra isn't a load of hogwash. It just goes to show how different minds work. I have tried listening to the sound of my breathing and concentrating on that sound, and I invariably go to sleep while doing this, but it does not always work. If my mind is overpowered by some worrying problem, then nothing works except pure exhaustion.
A bit of confusion here. There is no chanting in Transcendentaal Meditation (TM). There is a mantra right enough and one leaves the mind open to allow the mantra to drift in. It's simply a sound that pulses away in the background while your mind wanders where it will. The chanting you're talking about reminds me of the Hare Krishna devotees who shuffle along Oxford St in London belting it out and ringing bells.
I'm not suggesting TM as a cure for Parkinson's or even a means of alleviating symptoms. I'm merely offering a piece of personal experience of a once quite popular practice for relaxing the mind.
As for hogwash, well, I'm sure many of us are guilty of a bit this from time to time.
Hi Grey-stones. Sorry if I offended you calling it hogwash, but I have not ever been able to chant a mantra and not felt very self-conscious about being hooked in onto this idea. Maybe I don't understand anything about mantras and chanting. As I said I do this listening to my breathing and it works very well. I got it from a book written by a Buddhist monk. I know these Eastern guys are very different to us Westerners, they are far more laid-back and relaxed than we are (generalizing). Why don't you try and explain it to me please, I must be a bit 'thick'
I'll leave the chanting to you John. Transcendental Meditation (TM) was developed by an Indian gentleman, the Maharishi, as a way of inducing calmnesss of mind. I don't think he was a Buddhist but followed a teacher called Guru Dev. TM was taken up by people of all professions and ways of life including many celebrities in the 50s in India and later in the west. There is a spiritual side to it but this doesn't interest me at all. The practice must be presented by a qualified teacher who will give you your mantra. This is a word but it is never vocalised. One student I knew printed it on a plastic strip and stuck it to his dashboard. Obviously he had to be given a new one. While you pracise TM the mantra just runs along in the background while the mind wanders where it will, unhampered by any particular focus or point of concentration, but is never vocalised. The Mahirishi believed that the more people pracised TM the more peaceful the world would become, not a bad aim I'm sure you'll agree.
It's got no application to any illness that I know of apart from the stresses and strains of life. So, no need to be alarmed.
Hi Grey-stones. I am not sure what you mean by 'never vocalized'. I assume you mean not ever spoken out loud? I am not sure that I am able think a mantra like, 'Mary had a little lamb' over and over, while thinking about fixing my car or what I need at the shops. It does not gel with me. Perhaps I am on the wrong track. What other thoughts are you referring to?
We used to have a prime minister in this country called John Major and during prime minister's questions he often resorted to the phrase 'I shall refer the honourable member to the answer to my last question.' In a way it took the fun out of a good show. I'll just say, 'Mary had a little lamb' is a very long word.
Hi Grey. I missed the fact that a mantra is a single word. Sorry about that. You suggest that repeating one word like "Sleep" allows your mind to wander into a reverie of past holidays or pleasant past events?
Thanks Grey. I have tried last night, while going to sleep, to repeat a word and try to picture in my mind, sailing my boat on a clear summer day etc. But I could not do both at the same time. I got to sleep alright but the mantra?
You are truly having me on. One big rule of TM is Don't try this at home. If you want to take it any further find yourself a certified teacher. Now there's a queue of people wanting to talk to you.
Hi Grey. You mean that I did not try to keep repeating one word and at the same time think of a pleasant experience. I did, but it did not work. Believe me!
John
John, are you able to keep control over more things by concentration the more that you do it? Does the ability to concentrate increase with practice? I can not find anywhere that you discuss concentrating on multiple things.
Are you saying that the meds are interfering with that ability?
By the way , the very best piano players played by practicing and then when they played they let the brain take over and it runs most of the show on auto pilot,well a bit more complicated than that. They do not play as well if they have to think about what note is next.
Also I was very impressed by an answer to my last post by LAGLAG about Rock Steady Boxing training as a treatment for PD. My first thought was that it very much supported what you have been saying. The photo at the web site showed people with PD but they were actually really fully smiling , no mask.
Hi Gymbag. I am not sure that I understand your question. I can only concentrate on one thing at a time. When I started to address my walking problems I had to concentrate firstly on pushing up on the left foot, when transferring my weight to the right foot. After a couple of months doing this, I was able to then concentrate on straightening my right knee, before the heel hit the ground, immediately after having pushed upwards with the left foot. After many months I got that all right. Then I concentrated on my shoulders, which were hunched forwards, while still vaguely concentrating on the left foot and the right foot, in the background. Finally, the easiest part was to concentrate on swinging my arms. All this is done consciously, but now I do it like the piano player you mentioned. I am not concentrating on one thing but all five things, one after the other. When I lose concentration, which happens regularly, I immediately feel and hear it. My subconscious still refuses to push up on the left foot and the right foot scrapes the ground and my shoulders hunch forwards and my right arm ceases to swing. I seem to do a routine check on all the movements, including placing the weight of my body on the inside of the right foot, because I get pains on the outside of my right knee, if I don't place my weight on the inside of the foot.
It all sound very complicated but it works!
When Pd patients do boxing, they do not do it with an opponent, they do it alone. They have to concentrate on the moves.
Smiling is an automatic action, which is triggered by the brain. It is very difficult, if not impossible to do consciously. When we hear something funny or do something enjoyable, we are able to smile.
Dancing is something else that works with Pd patients. Many have found that they have no problem dancing. Look at my website for articles on dancing and cycling.
Exellent suggestion. I have been off medicines for 9 out of 12 years that I have been diagnoised for PD. Only ontrolling my diet and exercises have helped me. I think I am doing all these consciously. understand the reason now. Thanks for sharing your experiene.
Well it still irks me that you are telling people that they do not need their meds. and I do not agree with your conspiracy to sell drugs theory. However I also realize that you are correct that exercise is extremely important in treating PD and you make a better argument in this post than in others. I know you can't do this even in your own post so I will once . Johns website where he further explains this is reverseparkinsons.net./
At the website you will have the opportunity to purchase his book on this subject. I guess I will buy a copy , I have tried almost every thing else that I have come across so far. My search for the answers continues . I hope this book has some humor in it.
I have read John Pepper's book & even contacted him because I thought the boxing was along the same lines. I think his book is an excellent read. I'm not sure I could go completely off my meds, but maybe I'm using them as a crutch? I do know I haven't had to increase my meds for several years. I am glad GymBag noticed that most people on the website for boxing are smiling. Everyone is feeling better than they have in a long time. They enjoy the companionship & the support of others that know how they are feeling & they are fighting together & feeling better. I live in a place where I can't walk everday so the boxing helps me & going there keeps me motivated.
What is wrong with a crutch?.........or a prompt, cue, med or placebo?.........or exercise (if it works for you).......or anything else that is of benefit at any given time?
Why not give ourselves a break?
There are no absolutes, there is no definitive cure.
What we can do is live our own lives to the full, share the highs & lows & not make value judgements about the experiences of others.
Hi GymBag. Thanks for the plug! I also hope you get something out of the book. I have not ever had one minute's training in order to write my book. I just had to sit down and write it. It was all there, in my mind, and I just had to sit down and put it on paper. It is not the work of a genius, it is just the experience of one man, who has managed to turn his Pd around. I know I can be a pain in the ass, but if it helps others to get better then I don't give a damn!
You may not believe me when I say that I have nothing against taking medication! Since I came to the realization that no Pd medication has any proven positive effect on the progression of the Pd then I had to ask myself why we take such medication. I have stated many times that if you feel any immediate benefit from the medication, then carry on taking it. However, if there is no immediate benefit then stop taking it. There is no cumulative positive benefit from taking it, at least, not to my knowledge.
Often, I hear of people having taken Pd medication, without receiving any benefit but having had some very serious side effects, for which they have been prescribed further medication. This seems to me to be quite criminal! If there are no cumulative positive effects from taking a medication and it does not do anything to slow down the progression in any way, then why take other medication to deal with those side effects? We do have the right to refuse to take medication that does not agree with us or does not have any positive effects.
I firmly believe that the pharmaceutical companies are in business to make money. That is not a crime. In order to make their money, they have to have a product that does what it is claimed to do. The problem is that that does not always happen and we patients are not aware that we can refuse to take medication if it does not work!
As I've said to you many times before, I wish I had met you before IK was "hooked" on a cocktail of PD meds. I empathise totally with your concept of controlling my PD symptoms with conscious thought control and I can do so for a limited amount of time but cannot sustain it. Have you any advice?
Hi froggatt. It is nice talking to you again. Like everything, the more you practice something, the better you get at doing it!
Having said that; I know it is most off-putting to only be able to perform something quite simple, for a limited amount of time. We immediately think we are wasting our time, but WE ARE NOT!
I can quote many cliches on this subject but just hang in there and keep doing what you can and you will be surprised how soon that amount of time improves and how soon your condition will improve!
Thanks again John for your positive experiences and sharing what you've learned. I've been practicing only wish I had known about all this 3 years ago. But got to carry on from where I am right now.
Hi Michaela. Good thinking. It is no use wishing this or that. We have to take it as it is. Make a game out of it, enjoy doing it to your best. Your best may not be very good some days, but it is still your best. Keep a record of what you achieve and see it getting better. There is nothing better than evidence of getting better.
Kind regards
John
You can get a laser walking stick imported from the USA. It projects a red line on the ground in front of you. You step over this line. I almost bought one. But then I found you could get a laser on eBay that produces a line for £5. I got a 5mW one which is OK for indoors but not powerful enough for outdoors. You needs battery pack for 3 AA BATTERIES, a switch and a walking stick £3. 50 from Amazon. You need some way of attaching laser battery and switch to walking stick. I just used odds and end from my store of "keep for the future - may be useful" items. Then within an hour with some soldering and black tape I had my "home made" laser walking stick. DO NOT LOOK DIRECTLY AT LASER AT ANY TIME AND MAKE SURE YOU DO NOT POINT IT AT ANYONE ELSES EYES.
It is true that concentration helps but even with this laser and all the consciousness will and concentration in the world I find it very very difficult to walk an move without medication. I am waiting for a DBS operation. I have passed all the tests and had my MRI Scan. Operation possibly January 2015 - and I cannot get it done too soon.
Hi Parkibill. I cannot see why anybody would want to have a hole drilled in their head rather than learn how to consciously control their movements. I know it sounds like pie in the sky but it is very easy. I have not come across anybody who could not do it, even someone who was bed-ridden. I say it is a case of mind over matter and if you don't mind it doesn't matter. In essence it all comes down to belief. If you believe you cannot learn how o do it, then you will never learn, so it does not matter.
I am under the impression that even with DBS, the Pd still continues to get worse. So, does having a hole in your head improve your situation? I don't think so!
Reliance on medication and radical surgery are not the answer. They are illusions! Once you are on that path, there is no getting off!
Yes the holes in your head vastly improve the situation. I will be free of the dyskinesia and it may reduce the drugs I have to take. I have tried consciously to walk when I freeze and no matter how hard I concentrate I cannot move. I agree that the subconscious brain gets confused and that having something like paving stones with pointing between the slabs helps walking but I think you are not a typical Parkinsons patient.
You may be able to do this but how many others have you managed to persuade to follow your example or how many others can follow your example. Have you done any trials with a group of Parkinsons patients?
I have had Parkinson's for nearly 15 years and I have only suffered waking difficulties an freezing in the last 6 months. How long have you had Parkinson's? I think I have been very lucky to last this long on drugs alone. I support the standard medical treatment of Parkinson's but that does not mean that everyone needs to agree. But I object to your premise that everyone just needs to concentrate.
Hi Parkibill. Let me deal with one thing at a time. I assume that you are aware that dyskinesia is not a symptom of Pd? It is a side effect of medication. Too much dopamine in the brain causes dyskinesia. Hey! Pd is caused by too little dopamine in the brain, so how come we have too much dopamine in the brain? I am not a scientist, or an 'academic' so I cannot answer that question but let me look at it logically. Dyskinesia only happens when we take a lot of levodopa medication. Why do we have to take more and more levodopa medication? My understanding of this matter is that our bodies build up a resistance to any toxins that we ingest and in order to get the benefits from the levodopa we have to take more of it. That produces more dopamine, which overcomes one or two of the symptoms, but the side effects of the levodopa also increase, which causes the dyskinesias. I have spoken to many patients with dyskinesia and have suggested that they reduce their intake of the levodopa pills. Some of them did this and their dyskinesias disappeared. So they stayed on the lower levels or changed their medication.
There are better ways of increasing dopamine levels in the brain, one of which is to take an MAO-b inhibitor, which allows you to stop the natural breakdown of dopamine in the brain, thereby increasing the amount of available dopamine.
If you do fast walking, which has been scientifically proven to produce GDNF in the brain, then you have more dopamine producing cells and therefore more dopamine.
Has it occurred to you that you might not be concentrating properly? I have worked with hundreds of people with walking problems. NOT ONE OF THESE PATIENTS HAS BEEN UNABLE TO WALK PROPERLY, AFTER I HAVE SHOWN THEM HOW! That is not a lie or an exaggeration. So why can't you do it? Are you concentrating on willing yourself to walk? Or are you concentrating on lifting one leg up at a time and moving it forwards and placing it on the ground in front of you, then lifting the other one up and doing the same?
Let me ask you to do something much easier. If your arms don't swing, when you walk, then concentrate on swinging the arms. That is much easier than concentrating on moving the legs. If you are able to swing your arms, then you certainly can move your legs. Try it!
If you have read my book or some of my other posts you will have read that my first Pd symptom started in 1963, which is 51 years ago. So how long have I had Pd? I was only diagnosed in 1992. I therefore have been diagnosed for twenty-two years (2014).
Open your mind to the 'Possible' and don't criticize anything until you have tried it.
Concentration on our actual movements is a 'must do' for all Pd patients. If the subconscious brain is unable to communicate with the limbs then we have to take over that function by using the conscious brain.
You have not questioned the ability of the conscious brain to be able to bypass the substantia nigra. That is merely an assumption of mine, based on my experience. I had to ask myself why I can swing my arms, consciously, when I am unable to do so in the normal fashion? The answer has to be that the conscious thoughts get through to the limbs and can only do so if they bypass the substantia nigra.
As far as carrying out a scientific study of using the conscious brain I am not equipped to do this. I am eighty years of age. The patients I have worked with live all over South Africa, which is quite a large country. I cannot get them together in one place at the same time. I could not monitor what they are doing and how often they do it. I have tried to persuade other organisations to take this on, but with no success. I am only one person!
John
I have read more of the posts and replies on this matter. You say you are not an academic. That is very clear. I am an academic with a vey high intelligence. You seem to have never been medical,y diagnosed with Parkinson's. There are many diseases and viruses that produce Parkinson's like symptoms including some STD's. So how do we know you really have Parkinson's
Some of the other people you claim have had success including the bedridden may not have been suffering from Parkinson's either. I think everyone reading your blog here or your book should be vary wary. Non academics, with no knowledge of the different types of muscle in the body, and I presume no knowledge of neurology, or which part of the brain is involved can be misleading.
For example are you aware that the part of the brain involved has evolved from the brains of dinosaurs who also had to walk. It is such an old part of the brain deep in the center close to the spinal cord. The conscious brain of which dinosaurs had very little is concentrated towards the front of the brain near the forehead. These are too far apart to effectively communicate. But visual messages also are dealt with in the older dinosaurs brains since they had to see with their eyes too so these may be able to stimulate the movement centres more effectively.
It is well established that a shortage of dopamine in the brain caused by dopamine production cells dying off in the brain. But dopamine is also soaked up by stiff muscles. Most people feel good after a massage because of the dopamine that has been released. I find I wake up stiff and one of the best ways to unfreeze is to get my stiff muscles unstiffened. The release of dopamine reduces the freezing.
Parkinson's is a very complicated disease, so complicated that the medical profession and drug companies have no good long term answers. The discovery of levodopa was a huge breakthrough but with the side effects of dyskinesia after 5 years. Deep Brain Stimulation has been another great success. People are able to lead normal lives afterwards with almost no signs of dyskinesia. It continues to work for thr rest of you life, and there is evidence it can extend your life. It has been used on hundreds of thousands of patients and is now becoming a fast and relatively safe procedure.
I encourage people to enquire a it it.
• in reply to
Dear highly intelligent academic. There is no part of our mammalian brain that has evolved from reptilian dinosaurs . We may have evolved from apes that evolved from a mouse like mammal who evolved from a water dwelling creature, but not insects and not dinosaurs.
• in reply to
The dinosaur brain is a common term for the basal ganglia which contains the substania Negra the Globus Pallidus and the subthalmic nucleus. These are very old parts of the brain. It does not imply. We are decended from the dinosaurs. Just that this part of the brain evolved millions of years ago. The rest of our brains developed much more recently. Excuse my typos and excuse my use of the wrong terms. But as all Parkinson's pateients who are over 63 will know and who have Parkinson's for over 15 years and who also suffer from bipolar disorder my brain is no longer what it used to be. I would like to know how many suffer from this double affliction. I have suffered bipolar since I was a teenager and had many near suicidal depressions. Despite this I have held down an academic career at Oxford university, started a massive reseach program in Nuclear Physics, supported a famlly of two and wrote a famous nuclear structure. Programme after I retired in 2000.
This seems to be a very aggressive forum led by John Pepper whom I simply cannot agree with.
• in reply to
That is too bad. Keep up the good fight.
I on the other hand am a British secret agent living in Canada who has been assigned to fight the evil genius "The Brain" who with his partner Pinky are trying to take over the world . You see the problem with these forums?
• in reply to
I don't think you are what you say you. But I tell the.truth. I agree with your introduction. Everyone should have a neurologist beford taking any advice from here. I also agree that there may well be 4000+ so called experts on here and none are neurologists
Really a forum like this should have a moderator who is a neurologist or a specialist Parkinsons nurse. At the hospital where I am having my DBS operation there are 3 Parkinsons nurses. I have learned more about Parkinson from my male Parkinsons nurse who is extremely knowledgable and much more approachable than the surgeons and neurologists.
I would advise people to find out the names of the specialist Parkinsons nurses and cultivate one as a friend. He will answer your questions more quickly and if you are waiting for stage 1 or stage 2 of your operation she will have provisional dates. These nurses also do the programming.
I would take Pepper with a pinch of salt. Consider that the improvement in symptoms when taking coconut oil was not caused by the oil but rather the brain concussion when the coconut fell on their head.
I will confirm that concentration can help with freezing. My Parkinsons nurse told me about the laser walking stick that produces a red line on the ground in front of you. Using concentation you step over the red line and I was surprised to see myself walk easily but if I switch off the laser I freeze again.
I made my first attempt last week. It is a bit of a bodge. I am making my second model. I found on eBay that you can buy a torch which uses LED's and has red spot low power laser attached to it. It has a circular clamp which was designed to fit on the barrel of a gun. But if you Imagine your slim aluminium walking stick as a gun then in use the laser will point down to the ground.
This uses a spot laser. To turn it into a line laser you need to buy a diffraction grating also available on eBay. The only way I could do this is to buy the cheapest line laser on eBay with a grating and detachable lens. Before using the laser unscrew the lens cap and insert the diffraction grating which must match the wave length of the laser about 650nm. The lines on the grating should be aligned with your forward direction of travel. If the lines are perpendicular to your line of motion the laser line will be along your direction of motion (wrong).
The laser is low power and once spread by the diffraction grating the power is spread too. So this will be completely safe.
The professionally made laser walking stick costs £170 while you can make a crude one for £11. The rifle site version costs £13 plus costs incurred in getting a grating and walking stick. But it will be less than £25.
Hi Parkibill. What part of what I say I am don't you believe.
1. I am a retired businessman aged 80.
2. I was diagnosed with Pd in 1992.
3. My Pd symptoms started in 1963.
4. After 10 years taking eldepryl and doing regular fast walking my condition had improved so much that I no longer needed to take the medication.
5. I use my conscious brain to control my walking.
6. I use my conscious brain to bring food to my mouth.
7. I keep my chest clear of infection by regularly getting rid of the phlegm in my chest.
Perhaps you can tell me which ones you don't believe?
John
• in reply to
"Consider that the improvement in symptoms when taking coconut oil was not caused by the oil but rather the brain concussion when the coconut fell on their head."
Yes! Your statement is very funny.
• in reply to
I don't think you are what you say you. But I tell the.truth. I agree with your introduction. Everyone should have a neurologist beford taking any advice from here. I also agree that there may well be 4000+ so called experts on here and none are neurologists
Really a forum like this should have a moderator who is a neurologist or a specialist Parkinsons nurse. At the hospital where I am having my DBS operation there are 3 Parkinsons nurses. I have learned more about Parkinson from my male Parkinsons nurse who is extremely knowledgable and much more approachable than the surgeons and neurologists.
I would advise people to find out the names of the specialist Parkinsons nurses and cultivate one as a friend. He will answer your questions more quickly and if you are waiting for stage 1 or stage 2 of your operation she will have provisional dates. These nurses also do the programming.
I would take Pepper with a pinch of salt. Consider that the improvement in symptoms when taking coconut oil was not caused by the oil but rather the brain concussion when the coconut fell on their head.
I will confirm that concentration can help with freezing. My Parkinsons nurse told me about the laser walking stick that produces a red line on the ground in front of you. Using concentation you step over the red line and I was surprised to see myself walk easily but if I switch off the laser I freeze again.
I made my first attempt last week. It is a bit of a bodge. I am making my second model. I found on eBay that you can buy a torch which uses LED's and has red spot low power laser attached to it. It has a circular clamp which was designed to fit on the barrel of a gun. But if you Imagine your slim aluminium walking stick as a gun then in use the laser will point down to the ground.
This uses a spot laser. To turn it into a line laser you need to buy a diffraction grating also available on eBay. The only way I could do this is to buy the cheapest line laser on eBay with a grating and detachable lens. Before using the laser unscrew the lens cap and insert the diffraction grating which must match the wave length of the laser about 650nm. The lines on the grating should be aligned with your forward direction of travel. If the lines are perpendicular to your line of motion the laser line will be along your direction of motion (wrong).
The laser is low power and once spread by the diffraction grating the power is spread too. So this will be completely safe.
The professionally made laser walking stick costs £170 while you can make a crude one for £11. The rifle site version costs £13 plus costs incurred in getting a grating and walking stick. But it will be less than £25.
Hi Parkibill. First let me put your mind at rest. I have gone to great lengths to ascertain that I really do have Parkinson's disease (Pd). The first neurologist, who examined me thoroughly, and made that awful diagnosis, left South Africa three years later, which left me with no option but to see another neurologist. This one, after a thorough examination, confirmed that I do have Pd and continued to treat me. After seven years with him, my condition had improved so much that I was able to stop taking any Pd medication. I then wrote my book, because I felt that If I could do this, then so could others. I sent a copy of this book to a world renowned investigative scientist, who immediately came all the way to SA from North America to see me, at his own expense. He interrogated me and also interrogated my GP and the second neurologist. He also interrogated another neurologist, whom I had consulted since writing my book. I then took him to several Parkinson's Support Groups throughout SA to talk to patients I have worked with. He spoke to patients I had been able to help and to some whom I had been unable to help. He went back home and proceeded to investigate the scientific evidence supporting my Pd history. He is absolutely sure that what has happened to me is genuine and deserves to be investigated further. He has written a book on the subject, which is due to be published in January 2015. When this has happened I will post it on this website for all to see.
As far as my not being an academic, I am not a fool. I am very cognizant of how Pd affects the brain and the body. I am fully aware of the substantia nigra and the workings of the mitochondria. That does not make me an academic. I prefer not to use medical terms and the nitty-gritty of all the articles I read and pass on, because it goes over the heads of many of the readers and achieves nothing. I have no desire to impress people with my knowledge or my life's achievements. I have been very successful in business, both here and internationally. My late wife and I started a business in 1970, which became a publicly listed company on the stock exchange in 1987, and when I retired, due to Pd in 1992, our company was employing over 1600 people. That did not happen because I was an academic, it happened because we were not fools. I did not go to university because I had to help support my family, because my father was unable to continue working. We don't have to go to university to succeed in life!
I disagree with many of the common practices with Pd, because of my experience, not for academic reasons. For instance, I question the statement, which is often made by 'academics' that Pd 'Kills' certain brain cells! It is often stated by other 'academics' that the damaged brain cells are incapacitated. That makes sense to me, because GDNF is reputed to be able to regenerate those damaged brain cells. You cannot repair dead brain cells, so what are these 'academics' talking about when they say those cells are 'killed'?
Let me ask you some questions: Are you a doctor or a scientist? Do you feel threatened by what I say on this website? Do you have any scientific evidence that what I say is not correct?
This is a forum and we 'non-academics' have the right to express out opinions and you 'academics' have the right to disagree with what we say. I will be the first to apologize for anything I say that is not true. I want to genuinely help patients get better. I am not here to make money from anything I say or do. What are your motives for being here?
I really think you should be stopped from posting your ideas, theories or whatever you call them. I fear this pedaling of false hope should have been muted a long time ago. I was going to say before it does any harm but I suspect it already has?
You ask Parkbill to produce "scientific evidences that what I say is not correct?" I think normal practice requires you to produce evidence to back up a clearly stated theory before asking such questions. Judging by what I read here and in the much mentioned book, I doubt this evidence exists. Yes, I've read your book, I can't recall why, but it lived up to my expectation that it would be same as here. Ideas plucked out the air and facts molded to support the idea.
I've noticed you tend to ignore evidence that doesn't suit your purpose or requires effort on your part to understand.
Let me give a couple of examples:
GDNF' you state "I disagree with many of the common practices with Pd, because of my experience, not for academic reasons. For instance, I question the statement, which is often made by 'academics' that Pd 'Kills' certain brain cells! It is often stated by other 'academics' that the damaged brain cells are incapacitated. That makes sense to me, because GDNF is reputed to be able to regenerate those damaged brain cells. You cannot repair dead brain cells, so what are these 'academics' talking about when they say those cells are 'killed'?"
My non-academic response: it is probable that neurons can exist in three broad states: Healthy, dying and dead. If GDNF is applied to these neurons, healthy cells would be protected from degeneration, effectively halting Pd, dying cells would have the opportunity to be repaired and become healthy cells thus reversing some of the damage. Dead cells would remain dead.
I'm not a scientist, but I think the second version is plausible and your statement has not been thought through. Ergo any conclusions you draw from your version are founded on incomplete research.
Hi Grey. Yes! I would like you to go on. It can only do good to all concerned.
I must start off by saying that you are entitled to your opinion, which I am sure is shared by many other people.
You say you have read my book. In that book I mention the address given by Dr Beth Fisher at the 1st World Parkinson's Congress held in Washington DC. In her address she gave all the facts and figures about the results of various forms of exercise carried out by Patients with Pd. Those figures clearly showed that:
"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.". Those are not my words they are hers.
The words "Convergence to normal" can only mean that the patients were getting better. 'Normal', I assume is the performance of a person without Pd. Have any other studies been carried out by any other scientists? I don't know the answer to that question. If they have not, I would have to ask the question, "Why not". I know it costs a lot of money to carry out scientific studies, and that could be the only reason why not. It is very important to be absolutely sure that certain types of exercise are able to reverse our Pd symptoms.
If there are three states of cell life, namely, Living; Dying; and Dead; then yes, you may be correct. I apologize for not having thought that one through. But I still feel that the many scientists who make the statement that Pd "Kills" certain cells is not correct. Perhaps it would be more correct to say, "Eventually kills". I get the distinct impression that some people do not want patients to get better, they want them to believe that there is nothing that can be done about Pd, other than to continually take palliative medication until that medication no longer serves any function. That makes good business sense but it is not in the best interests of the patient.
You were going to give a couple of examples, but I only see one.
Tell me Grey, what would you do if you were me? Would you keep your mouth shut and not tell anybody that you had got better? Would you be ashamed to tell the world that you had got better? Would you keep it to yourself, just in case even 50% of other patients could not do exercise and would feel very disappointed that they were unable to do so?
If only 25% of existing patients were able to get the benefit from doing what I suggest in my book, then that equates to well over one million people. I think that is worth all my efforts, don't you?
I have spent tens of thousands of dollars getting my message out to Pd patients all over the world and have not received back a tenth of that amount in book sales. I am only interested in getting that message out there, via my website and my book. Unfortunately both those activities cost money and I don't have an unlimited supply of that commodity. Otherwise I would make the book freely available to all and sundry.
I know in my own mind that if I could get to every newly diagnosed Pd patient in this world and they were to do exactly what I advise, then the figure of 25% would be greatly increased. There is more than one type of Pd, but just how many types there are is not known.
You say, "Ideas plucked out the air and facts molded to support the idea". Do you mean that you think I have invented the story of what happened to me? Or do you think that 'fast walking' is a figment of my imagination? What exactly do you think is a figment of my imagination?
Dr Beth Fisher at the 1st World Parkinson's Congress held in Washington DC....
I need to research her before I can make useful comment.
If there are three states of cell life...
I really have to rely on scientists regarding the dead cell question. I am aware that whilst the majority opinion is death, some believe that cells are in some sort of dormant state, alive but unable to produce dopamine.
You were going to give a couple of examples, but I only see one.....
Example 1 above GDNF issue
Example 2 - Dyskinesia Question separate post below (added when I realised I had only supplied a single example)
Tell me Grey, what would you do if you were me? ....
I have no evidence of this project apart from what you tell me. I've stated my doubts about the way you operate and that certainly does not give me confidence. Without evidence how on earth can I begin to answer such questions?
Hi Grey. You said you have read my book so I assume that you think it is a load of hogwash. You are entitled to that opinion of course. However! I was not sure myself whether I genuinely had Pd or not, even after having written the book. I sent a copy of my book to an investigative scientist, who had written a book on a similar subject. He contacted me and he came over from North America to see me and investigate my Pd history. He has now written a book about it, and some other similar subjects. This book is due to be printed now and will be on the market in January. As soon as it becomes available, I will let you know.
There is nobody out there who makes a scientific claim that there is a medication that 'cures' or stops the progression of PD. So therefore there is no compelling reason to take medication except to deal with specific symptoms. That leads to the inevitable conclusion that each PwP needs to deal with whatever resources they personally have to deal with this diagnosis and manifestation of the disease as an individual. John's message is clear, move as much as you can, do for yourself and minimize medications or giving yourself over completely to 'experts'. There is nothing specifically wrong with our bodies resulting from PD, only that they don't automatically do what we're used to them doing. So John's participation and encouragement is very much appreciated. Personally I don't care whether he has, had or will have PD, the point is he is encouraging appropriate action and empowering the individual. Much has been published regarding the power of the placebo effect, which is if you think it your brain can make it a reality. All consistent with false or real hope, it's having hope that matters.
So I will accept the encouraging messages and example of John who, as an 80-year old man with or without PD is active and contributing to our community.
Hi Racer. Thank you for this sensible approach to what I am saying. Yes! There is a remote possibility that I do not have Pd. But experience has told me that I have been able to show EVERY person with walking problems, with writing problems and with voice volume problems that they are able to do what I have done. Not one of them has been unable to do so!
That means that maybe none of them have Pd? If they are able to do what I have done, then if I don't have Pd then maybe they don't either.
There is a very big difference between me and many of those people i have helped to walk properly and write properly. I have continued to persevere with the conscious control of my movements, but many of them haven't.
Whether it is because they are not convinced that it is worth trying to learn new ways of dealing with the symptoms or that they would rather pop a pill, I don't know! We all have the right to follow our own chosen ways. and I don't argue with that.
You wrote, "I assume that you are aware that dyskinesia is not a symptom of Pd? It is a side effect of medication. Too much dopamine in the brain causes dyskinesia. Hey! Pd is caused by too little dopamine in the brain, so how come we have too much dopamine in the brain?"
John? Anyone? Spot the error, the false statement?
No, I accept that dyskinesia is the result of medication for the majority of Pwp who go on to develop the condition. But dopamine is not the culprit because as you say, there's a shortage.
Hi Grey. I tried to download this website but was told that this page was not available. I have only ever read that too much dopamine causes the dyskinesia, but don't ask me where.
When I asked a neurologist what would have happened if I did not in fact have Pd but took an MAO-b inhibitor for 10 years? His answer was, "Nothing". I cannot believe that answer because he was telling everybody that I do not have Pd and I was responding with the claim that if I did not have a shortage of dopamine (not having Pd) then I would have serious dyskinesias as a result of inhibiting the natural breakdown of dopamine in my brain.
Do you think he was correct? If so, what do you think would have been the result, if I did not have Pd but took an MAO-b inhibitor for 10 years?
No, I accept that dyskinesia is the result of medication for the majority of Pwp who go on to develop the condition. But dopamine is not the culprit because as you say, there's a shortage.
Hi Grey. I think it might level the playing field a little if you would tell us all whether you are a doctor or in any way connected to the medical profession or the pharmaceutical industry. If you are reluctant to divulge this information then we will all have to assume that you have a financial interest in this subject and your views can be assessed accordingly.
Not doctor, no connections with medical profession or pharmaceutical industry. Apart from being a consumer or their services and products. And have volunteered for drugs trials.
Have on several occasions been asked if I'm journalist - never understood why - No
No financial interests. Worked in Engineering and IT 'till I chucked in the towel due to PD.
Know a bit about PD, interested in neurological aspects. Expert in neither, will never Know more than a small fraction of these subjects, welcome useful comment and corrections.
Hi Grey. Thanks for putting my mind at rest. I don't mind discussing this subject with doctors, but I do need to know who is asking the questions or making the statements.
I have endured twelve years of opposition from neurologists, who are adamant that I do not have Pd, because there is no cure for Pd. I have never claimed to be cured! I cannot accept a diagnosis from any doctor who has not examined me. I can only assume that when that happens, the doctor concerned has a hidden agenda and that agenda is not worthy of being held by a doctor.
Hi Grey. I have pondered this one but I am unable to come up with an answer.
I have not come across anybody who has dyskinesia who is not taking levodopa medication! Someone, I thought it was you Grey, said that dyskinesia is caused by levodopa!
That makes sense, bu then we come to the person who took an MAO-b inhibitor and sinemet and gave up the MAO-b inhibitor in order to overcome the dyskinesia. I think I can explain that! The MAO-b inhibitor helps the brain retain more of the dopamine that is already in the brain, but now we have a problem, is the dyskinesia caused by too much dopamine or too much levodopa?
Hence the quandary! I know what I would have given up! It would not have been the MAO-b inhibitor.
Yes, John, I did say in a post above here Levadopa is the culprit. That was a one word answer to a rather complex scenario. Reading the literature available to me, it suggests that the actual mechanism causing the movements we are familiar with are not fully understood. It has a name - Levadopa Induced Dyskinesia (LID).
The problem is thought to result from the way levadopa is administered, which is intermittent doses. This results in damage to an area of the brain called the striatum. I should add that dopamine agonists are believed to cause same problem.
The striatum is in the basil ganglia (BG). It is the primary input to the BG. It also co-ordinates motivation with body movement.
It is believed that the damaged striatum produces “abnormal motor outputs” which result in the involuntary movements associated with dyskinesia.
Still awake?
LID has been known about for a long time and was first reported Cotzias who led the team credited with the first successful use of levadopa in PD treatment.
It is interesting to note that areas of the striatum are sites for some of DBS operations and the current GDNF trials at Bristol.
So we have a damaged striatum, which emits abnormal signals causing the dyskinetic movement. What triggers this?
Concentration of levadopa in blood!
It normally occurs at peak concentration (PDD - peak dose dyskinesia). As the disease progresses, it changes to when there is rise and fall in concentration (DD - dysphasic dyskinesia).
Your final question, John, I think I can answer with simple logic.
The patient doesn't have enough dopamine to function.
MAO-b saves some of dopamine from the garbage can.
Some of not enough is less than not enough
Therefore patient needs more.
And that's why she takes the God dammed awful shit which damages her striatum which sends out signals to move and she moves when her concentration of levacrap is at a level depending on what stage she's at, whether she likes it or not, and a point that seems to be missed is that she wouldn't be able to walk because, like me, she can only shuffle if she doesn't have enough l-dopa to form dopamine to transmit a signal across a synaptic gap or two million.
Hi Grey. Thanks for this info. I am hopeless at understanding how to do things differently on HU. I merely respond to other people's responses. I do my best to create new topics for discussion but do not know how to look or where to look for other people's topics, which I might find very interesting or maybe disturbing.
I think conscious movement is what is commonly known as exercise, a know treatment that slows PD and results in higher quality of life. But, the disease progress just as aging progresses. The both end in the same way. Eventually the human body gets so tired that the mind relaxes and lets it go. This is kind of like what many people refer to as mindfulness. I find it worthwhile to improve our own quality of life keeping in mind that we do not have complete control.
Hi Cbauer. We are capable of doing exercise, like walking, without concentrating on what we are doing. many people walk on a treadmill, while listening to music or watching TV. That walking is controlled by the subconscious brain. None of us, other than people with Pd, have to think about HOW we walk, we only have to think about where we are walking and how fast we are walking. Conscious control of movement is when we consciously take over that control from the subconscious. This is not easy to do because we don't know which part of the brain is doing what. I have said that the one part of our walking, which is often not working properly is the swinging of both arms. If you have this problem, you can easily take over the swinging of the errant arm or both arms by consciously swinging them. The same goes for the feet and the legs, but it is more difficult to know how to do it.
Yes the disease does progress all the time. However, I believe that if we do fast walking for one hour, three times a week, missing every second day, we produce enough GDNF in the brain to repair enough brain cells in order to keep ahead of the Pd. If that were not true then I would not be in the condition that I am. I have had many instances where I have not been able to walk, due to injury or other health problems. In each case, when this happened, I started to notice the worsening of my symptoms after about six weeks. I also noticed the same effect each time I came off the medication, which was twice. The last time I came off the medication permanently, I went through a period of six months, doing my walking and making notes of all the changes taking place. I assume that there was some reaction in my body after permanently ceasing taking the Eldepryl. It came right within a year and has stayed that way ever since.
I have had PD for 'only' 7 years. I noticed that in the morning when I start my walk to the gym, my steps are typical for PD but as soon as I correct it a few times it goes ok. Only occasionally I need to correct it again.
Right arm swinging it difficult though even with 1 kg weight in it.
Perhaps I don't need to switch conschious brain all the time because I am not in the progressed stage yet?
On a treadmill the walking is correct without intervention of my mind.
AS I understand and please correct me if I am wrong, the walking helps to maintain symptoms but not halt progress, It just makes the PD course milder.
I do walking for 15 years and have PD for 7 years. Without medication except Azilect.
In last year I progressed to stage 2 (bilateral tremor) and three (balance) but all symptoms are still mild.
So does your program stop progression or helps to maintain good quality of life in spite PD?
If I am in the kitchen doing the washing up when I come to dry and put away I am constantly consciously walking. Every time I walk to the particular cupboard to put away the next item I have to plan what I am consciously going to do next, which way to turn, go backwards or whatever the point is that every movement requires planning and unfreezing before movement can begin.
Indeed I am completely unable to allow my sub-conscious to take charge of movement. I am walking consciously but freeze all the time.
Another example, drooling. Some say that we PD people have problem with over production of saliva. This not strictly true. Normally, as a PD person or not, we have an accumulation of saliva which is "discarded" by an automatic swallow to get rid of that accumulation. Now due to PD, that automatic movement is not fully functional so sometimes an accumulation is not swallowed and too much saliva remains in the mouth and that excess results in a dribble. If one realises there has been a build up before a dribble happens one can make a conscious movement to swallow the latest load. But if one is engaged in another activity then even conscious movements may not occur.
Normally the sub-conscious controls a myriad of systems to do with the optimal functioning of the body, from digestion to body temperature, sleep patterns to fight or flight incidents. So the conscious mind can only handle a hand full of tasks simultaneously but the sub-conscious probably controls hundreds if not thousands of activites. PD does interfere in examples above but also peristalsis, gastric dysmotility, all sorts of things to do with vision. Voice control, volume , tone and correct access to a sub-consciously stored and retrieved vocabulary.
I suppose there are three types of movement control:
1. conscious only e.g. creating a piece of art, painting or whatever.
2, conscious and sub-conscious, e,g. walking and
3. sub-conscious only - hundreds of examples (probably more than you can shake a stick at.) some of which may be interred with by PD
Many sub-conscious control systems do not normally have a conscious component so where that is true if PD interferes it can only interfere with sub-conscious stuff.
I think your first paragraph describes exactly what lack of dopamine in the basil ganglia is doing to you.
In the past you have learned how to navigate round the kitchen (get from hob to sink, leave kitchen etc) and deal with unplanned events (pan boiling over, frying pan bursts into flames, trip over cat whilst carrying overfilled pan containing scalding water etc.).
These events are stored in distinct areas of your brain and the basil ganglia has the task of choosing which of the many ways to achieve a given task is going to be used and initiates the task.
It also has the task of dealing with the unexpected, and when the cat darts across your planned route, the Basil Ganglia runs through similar experience, chooses the best match and initiates the the changes required.
Running out of dopamine in critical area of Basil Ganglia cuts off access to this acquired knowledge and a basic service is all that's left. For me, it's a short shuffle. Dealing with change requires concious effort and often results in error. I just returned from toilet and all went well till a tuppaware container full of small bits had to be crossed. I was concious of effort to lift foot high enough to clear it, foot then forward to clear horizontally then lower foot to ground. Error - heal caught edge sent container in flight and me wrestling with settee in order to keep from fallling over.
------------------------
Need meds and deal with dystonia about to happen. ttfn.
John & Pete. I have a problem with your concept of conscious and subconscious movement. Are we ever fully aware of our movements? In my previous post here I described my worn off battle with the Tupperware box.
I was aware of my shuffle but have to say I wasn't by any means controlling it in a conscious manner until I thought about it, and was able to apply thought to it and turn in tight places and negotiate obstacles by applying thought to it. I was still operating at a high level and was oblivious to the complexity of muscle movement, balance etc.
I run into a major problem with your basic design. You open this thread with, "Pd only affects the movements that are controlled by our SUBCONSCIOUS brain."
This surely implies that PD of the conscious brain is impossible?
I try to extract change from my pocket using my right hand which has major PD issues. It's a difficult task, at times impossible. I try various tricks I have learnt from numerous similar experiences. I am very much aware of the limited movement I have available. PD of the concious brain?
The way I'm familiar with to classify movement is Voluntary, Autonomic and Reflex. Voluntary can be conscious and subconscious, whereas Autonomic and Reflex subconscious only (although some people claim to be able to control heart rate by voluntary means and we can to an extent control our lungs, so limited conscious Autonomic movements appear to be possible).
I now have a model in which the concious and sub concious are not two well defined mutually exclusive entities, rather it is one entity - voluntary movement - and your concious self is capable of dipping in and out of it. This is, I understand, concentration.
I suspect you may have picked up a now deleted post from "grey" or at least from a mischievous friend of his. I don't know what it is too which you refer either.
Hi Grey. I cannot claim that the conscious brain is not affected by Pd. I can say that, 'nobody I have been able to show how to walk properly' has ever not been able to do so. This must apply to well over two hundred people over the past twelve years. What is clear to me is that the hands are more easily controlled by the conscious brain.
When I say to patients, "Stop trying to will your legs to move, when you freeze, just think of putting your weight onto your left leg and then lifting your right knee up in the air, then straighten your right leg out in front of you, then PLANT that right heel onto the ground".
When they do this, it works immediately. Some have a lot more trouble than others, but they eventually do it. Then, as we walk together around the hall, they are able to walk as fast as I do, and as they are walking faster, just concentrating on planting each heel onto the ground, they are amazed at what they are doing.
I am going to ask some of the patients who have done this lately, to write an email to me, confirming what I have just said. I will forward those emails on to one of my HU contacts and he/she can pass them onto HU.
I joke with patients that I just wish I could twist my ear, in order to get into 'manual' gear and out of automatic.
It has taken me since 1998 to get more used to consciously controlling my walking, but I still lose concentration and revert back to my shuffle. I find that I shuffle often indoors, because my conscious brain is thinking of other things. I can take control immediately, but I cannot overcome this tendency indoors.
Hi Grey. Who am I to claim that the conscious brain is a separate entity to the subconscious brain. I used to say to patients at meetings that they are two separate areas of the brain, but was put right on that one very quickly. I am a patient, like all other patients, but my condition has improved and I have had to ask myself WHY?
If we think back to our early childhood, or more easily to our children's growing up, we soon realize that they spend fairly short periods of time learning to crawl and then to walk and then to bring a spoon to the mouth etc. That knowledge is then stored somewhere in the brain and can be easily accessed every time they want to perform any of these functions. The same goes for learning language. We can access words at will, that is if we don't have Pd, and we can do it at lightning speed.
BUT WE STILL HAVE THAT CONSCIOUS BRAIN THAT INITIATES EVERY SKILL. Maybe we don't use that conscious brain that often and as such, find it very difficult.
I paint pictures and sing songs to entertain people, write articles and make models. I am always trying to think up new ideas. This maybe makes my conscious brain a lot easier to use.
Hi Grey. You are very in-tune with both your body and your Pd. Those things happen to me as well, even though I regard myself as leading a 'normal life'. My reaction to these accidents is to laugh at myself and get on with my life. It does make ineresting reading.
Hi Pete. You have put this all much better than I could ever have done. I do mention all these things in my book, but not as clearly and concisely as you have here. I am not too sure of your last statement. I assume you mean such things as peristalsis. We cannot consciously control peristalsis.
Swallowing we can control. Voice quality we can control. walking we can control.
You mentioned temperature control. I have this problem that I am not aware that my body temperature has gone down too low until I start to shiver in the core muscles. Only then am I aware that I am cold. The same goes for being too hot. I can be sitting working in a room, where the temperature is way above normal, but I don't notice it. My late wife used to come home from shopping on a hot day and come into my study, which had a concrete slab roof. That slab got very hot in the summer, so I installed an air conditioner, which did not turn itself on. I was unaware that it was so warm in the study, but when she made me aware of the heat, I could not believe that I had not noticed it. I was not sweating, which I should have been. That would have been the normal reaction to that situation. I could consciously control the heat of the room but I was not able to will my body to perspire.
Another interesting phenomenon of mine is that I cannot immediately determine left and right. I often say turn left, when I mean turn right. What has this got to do with conscious control? I would turn in the right direction, when driving, which I think is a subconscious action, because I don't consciously turn the steering wheel. But if someone tells me to turn left, I turn right. Without the outside input from another person, I know where I want to go and I drive in that direction. This problem only happens when someone else tells me to turn left or right.
You describe a type of temperature control problems and differentiating left from right problems that I would say have never before been attributed to Parkinson's.
As to exercise The effect of PD on my autonomic system includes cardiac denervation which has lowered my exercise tolerance considerably. How do I regenerate cardiac nerves?
Hi Hikoi; Nice talking to you again. I, as a layman, assume that the brain regulates our body temperature and it also activates various measures to bring the temperature down or raise it up. I can only assume that Pd is the culprit, but I am sure that it would need to be nailed down by the professionals. I have come across other Pd patients with temperature control problems, so I am not alone.
I am sure you are asking the second question with your tongue in cheek. I would hazard a guess that all muscles improve in tone, when used and with that they should improve in performance, but that is only a guess and is probably not worth the paper it is written on.
Yes we have temperature control problems but they are not like you describe. We have hot flushes and drenching sweats.
And I was being somewhat serious though there is no answer.
Most people with Parkinson disease have loss of the sympathetic nerves of the heart that does not appear related to the duration, severity, or treatment of the disease. I have loss of nerve supply and it is known as cardiac denervation. I notice my pulse can rise on simple movement ( like getting up in the morning) from 80 to 120 plus.
Hi Hikoi. I have not had the hot flushes, I thought they only happened to ladies going through menopause. My late wife suffered terribly with them for over twenty years. The drenching sweats I get quite often. It is peculiar, as when I do my walk I don't perspire as much as I do performing silly little tasks, especially when I feel stressed.
Will you please tell me more about the sympathetic nerves of the heart. I have not heard about them.
Speaking to doctor friends I am under the impression that the best thing to do for heart problems is to do exercise. That has to be done under supervision and carefully. But cutting a long story short, you have to build up the exercise very slowly until you reach your maximum effort levels.
I am unable to raise my pulse levels much above 100. My resting level is around 50 a minute. I have what is known as an ectopic heart condition. That means that my heart sort of misses a beat and then puts in two quick ones immediately afterwards. It is not a problem.
As you have said we are all very different. What works for me does not necessarily work for everybody else.
John, you mention something interesting and which I have noticed in myself for many, many years, I cannot get my heart rate over 100. My resting heartrate is 46 to 50 as well. I wonder if that is a PD symptom or just being in good shape which others have told me and I was not convinced. We often walk around with PD for 10 or so years before being diagnosed until an obvious symptom appears like tremor. I also, in the past have not tired as easily as others and still seem to have more reserves of energy than most seniors. As to the left/right issue, could that be relatd to loss of sense of direction, also something I have always had, bad sense of direction.
Off this topic does anyone have any trick for falling asleep apart from meds?? This has been one of my most annoying problems since diagnosis....never, never before.
Hi Racer. I have been unable to access this thread for the past week or longer. Having successfully complained I cab now access it again.
I know I sound like a big KNOW-ALL and don't mean to come over that way, but I will try to answer the question about insomnia: It is now 5 o'clock in the morning. I have been up since 3am. I therefore should not be telling you that I have conquered this problem. What I have been able to do is find a way to get at least 6 hours sleep a day.
I don't let it worry me if I can't sleep! I get to sleep okay but can't get more than four hours of sleep before I wake up and can't go back to sleep. So when I know that I am not able to get back to sleep, I either turn on the light and read a book until I feel sleepy again, which can be up to two hours later. Then I am able to sleep again, even if it is only another two hours.
The secret is to not get anxious about it!
If my wife can't sleep with my light on, I get up and go through to another room and read there. More often than not, I turn on my computer and answer all my emails and HU replies. In that way I tire myself out and can go back to sleep again.
With the heart rate question, I also have a slow heartbeat when resting. It averages around the 52 level. For me to try to get it over 100 is an increase of nearly 100%. That is asking a great deal. If my resting pulse rate were 75 it is only a 50% increase to take it to well over 110.
John, interesting you brought up the left vs right issue. In my boxing classes when we do our stretching, many of the PwP's will get them mixed up. I never thought of that as being a symptom of PD, but maybe so? Also, we do laps around the gym & the trainers are always telling us to swing our arms with exaggerated motion & it does help us to walk with more balance & faster.
I have to mention the left/right phenomena--Last year on vacation with my son driving the rental car, I nearly drove him nuts with directions to "turn left", or "turn right" while pointing in the opposite direction. I have found that I, also, say the opposite of what I mean when giving directions.
Hi Marion. Yes! This is a peculiar happening. It happens a lot more often than we are aware. Not just with People with Parkinson's but to 'normal' people as well. I always feel such a fool when I do it, but it happens in an instant, and it is always too late to change it!
Hi Laglag. I can't say for certain that this is due to Pd, but I have no doubt in my mind that it is. I never had this problem before having Pd but that is no proof. I am sure there are quite a few problems that some of us have that are not known to be a part of Pd.
Yes! Swinging your arms in an exaggerated way means that you are consciously controlling that part of your walking. If you were to concentrate on stepping out as far forward as you are able and planting your heel firmly on the ground in front of you, you will then also be using your conscious brain to control your legs.
The more difficult part of the walking to control consciously is the pushing up on the back toes, before the foot lifts off the ground. In that way, you support the full weight of your body on the toes of the back foot until the heel of the right foot hits the ground. When you do that consciously you will find the walk becomes very smoooooooth and you don't trip over uneven surfaces, because your body weight is always being supported by one foot or the other. If we are not supported on the back foot, while the front foot is in the air, we start to fall forwards, which means that when the front foot hits the ground we are actually falling onto the ground, which is clumsy and looks as if we are limping.
John you are a motivated man,who lives well with Parkinsons Disease and youve written a book.
Where it crumbles for me,is your criticism of neurologists and your attitude to medication.I feel that you undermine what you see may threaten your theories.Walking has been great therapy for you and kept you fit but GDNF has unknown significance and I ask myself are you trying to inject its science for your own purpose.You have controlled your symptoms very well` but we all have the power to do that with encouragement and understanding ultimately it comes from ourselves. Knit ,ride a donkey whatever makes you happy.,Dont fear PD question everything information is good medicine
Your walking technique from what you describe uses concious thought to place the foot appropriately and send the message out from your brain to initiate the movement. OUT
Sensory feedback then activates from the stimulus of the foot ground to heel and ground to toes.This sends an inbound message to complete the step. IN
I think this pattern you describe,I call it think walking could help people stay on there feet,as important as the exercise aspect
Hi Balderdash. Thank you for this assessment. I am sorry that I come over this way, I don't mean to intimate that all neurologists are guilty of prescribing too much medication or of prescribing more medication to deal with the side effects of the medication already being taken, instead of taking the patient off the medication that is causing the side effects. I am sure that there are far more caring and better informed neurologists out there than the ones who can't be bothered to do their jobs properly.
My attitude to neurologists is strongly tainted by my treatment received from many of the neurologists in my own country, who slammed my book, when it was first published and, without bothering to speak to me or examine me, passed on the opinion that, "I do not have Pd and therefore never had Pd." That, you must admit , is very unprofessional! They have tried very hard to put their patients off reading my book and learning what they can do to make their lives a lot easier. If they had bothered to investigate my history, as one scientist already has, then we would really start to make a difference to the way we deal with Pd in the future. They are interested only in protecting their business interests and are not acting in a professional way.
Our local Parkinson's Association has been torn apart by all this animosity that has been generated by their opposition to what I am saying to patients. On the one hand, many of the patients I speak to are getting a lot of benefit from what they have learned. Nothing that I say in my book is detrimental to patient's health. Doing exercise and questioning all medication is not harmful to patients!
I make the point that it is not in the business interests of the pharmaceutical industry for us to get better. Those business interests are understandable! But doctors have a duty to look after the best interest of their patients and even if patients do get better and that is not in their business interest, they have to put the patient's interests first!
The question is, "Are they doing that?"
Balderdash. I desperately want patients to realize that what I am telling them is actual FACT. It is not me trying to sell my book it is me trying very hard to change the way we think about Pd and the way we can change the way we deal with it!
I am aware that there are so many different types of Pd and so many different ways that patients are affected by Pd. Nothing is lost by examining these facts. You might not like what I am telling you! You might not like being told that fast walking CAN help your body to reverse Pd, but that is a FACT. Nothing can change that fact. Many people with hidden agendas try very hard to deny that fact, but it still remains a fact.
At 80 years of age, I am running out of time to get this message across, before it gets lost and we all plunge back into darkness with no HOPE in sight for an improvement in the way we deal with Pd.
I say SORRY to everybody I am upsetting by preaching this message, but we have to face up to the FACTS!
Hi Balderdash. You have no reason to apologize. What you said is true. I am over-enthusiastic in my endeavors. I don't want to offend anybody but never cease to rise to the bait. I am genuinely sorry that I offend many people, but I know no other way of getting this important message across.
Keep up you responses. I am a big boy now and don't mind criticism, it does us all good!
John, as explained somewhere above, a lot has happened on this thread, including several posts from yourself. As things hav moved on a bit, I think it would achieve little to go over them, but if there are specific points you would like me to respond to, then bring them to my attention.
I am in complete agreement about trying to avoid meds. it is difficult to generalize because it seems every person has their own PD and is at a different stage and has different symptoms at the same stage. Of course if you have symptoms that make you uncomfortable or cause pain you should use all available means to get relief.
Hi Racer. I am not against medication! I have certain reservations about Pd medication. Because none of them has any affect on the progression of Pd and because they all have varying degrees of serious side effects I want patients to know that, "If the medication does nothing to alleviate any of the symptoms, then they are gaining no benefit from that medication. So they should stop taking it". If they don't get any benefit from that medication and they feel that they need to take something to alleviate certain symptoms then they should work with their neurologist to find a medication that works for them.
Pd is a peculiar condition. No two patients are alike. No two patients react the same to any of the medications. So we all have to go through a trial and error stage of finding the right meds. We can be lucky, as I was, in finding the right one for us.
The key, in my opinion, is to try to get to the situation where we are able to do exercise. Not just any exercise, but fast walking exercise. That is the goal, because fast walking produces GDNF in the brain and GDNF repairs the damaged brain cells and THAT REVERSES THE PD!
Hi Everybody. Today is the day that Dr Norman Doidge is doing the launch of his new book, "The Brain's Way of Healing". I spoke to him a few days ago and everything was on schedule. Since then the weather has turned nasty and there is snow and ice everywhere in North America. In fact there was no traffic being allowed into New York today!
Incredibly; while writing this thread, I received an email from Dr Doidge telling me that the book was launched at the end of last week in Toronto. How lucky can he be to have missed this bad weather in New York today!
I have not been receiving this blog for quite a while again. That makes it very difficult for me to react to various questions and statements. It is not me ignoring you all, it is what is happening at present.
For those who don't know who Dr Norman Doidge is, he is a research scientist living in Toronto. He wrote a book titled, "The Brain That Changes Itself". it proved that the brain is 'Plastic', meaning that it is constantly changing. It caused quite a stir in medical circles.
He came all the way to South Africa to investigate my Pd history and he has written a whole section of this new book on his findings. I was supposed to get an advance copy of his book some time ago but it has not arrived as yet. What he has said may not be what I am expecting to read but time will tell!
I look forward to reading what he has said and reacting to it accordingly.
Hi Everybody. Yesterday, I went to see a new neurologist, having recently moved to Cape Town to live. I had to do that because I want to have a DATscan to get final proof that I do have Pd.
He said to me that it costs a fortune (More than 2 months of my pension) and having examined me, he does not need any more evidence of the fact that I have Pd. So why am I looking to spend 2 month's pension money to prove to some doubting Thomas that I have Pd?
He also said that a DATscan cannot positively prove that I have Pd. He said that he would not know how to interpret that scan, seeing that I have had Pd for such a long time (51 years). So there we have it.
Either people believe that I have Pd and treat what I say in that light, or they don't. In which case, they must just ignore me and everything i say.
I have not read Dr Doidge's article on my case in his new book, "The Brain's Way of Healing" because my copy has not arrived as yet.
This link takes you to a video of an interview of the good Doctor talking about his book.
Hamlet: And therefore as a stranger give it welcome.
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
Mind wide open, VERY interesting. The brain repairs itself , modifies and Rejuvenates itself even in old age and all it needs is to be forced/ challenged to take on more work and it will enable itself to do that work with direction from us. Much more to it than that. very interesting.
LAGLAG talked about experiencing some of this in Boxing training /exercise specifically for PD.
Before everybody thinks I am in support of John. I agree that exercise both physical and mental is of extreme importance to the health and well being of Parkys, but I do not agree with his recommendations to discontinue medication and I believe that advice to be dangerous.
After reading the negative comments in this thread, I want to point out that John is not alone. Keep spreading the exercise recommendation, John.
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"After six months, the researchers found, there was no clear benefit for the study group as a whole. The picture looked different, however, when they focused on the 122 patients with milder Parkinson's symptoms.
Among those patients, 52 percent of exercisers had a fall over six months. That compared with 76 percent of those who did not exercise.
"This large effect was achieved with only 13 percent of exercise sessions supervised by a physical therapist," Canning said. "The results of our study suggest that early intervention for people with Parkinson's disease should be extended to include minimally supervised balance and strengthening exercises as a falls-prevention strategy."
"Early" is the key word, according to Canning. "We should not be waiting until the person has already fallen," she said.
Only an association was found between exercise and risk of falling among Parkinson's patients; the study did not prove cause and effect."
This is the 1st time for ages that I have been back on this 'thread'. I think it has exceeded it's sell-by date.
The good news is that Dr Doidge's book, "The Brain's Way of Healing" is making quite a name for itself. His story about my Pd history is very complementary. I have read through the book twice and still need to read it again, to try to remember the full story.
I hope that the book will put to bed many fears that some participants have expressed about my Pd history.
I wish you all well and hope to be able to create another thread of interest to Pd sufferers.
Hi Eva. I hope you really get involved in taking charge of your own health situation. Don't expect immediate changes in your life, it is a gradual change that will take place, if you start doing MEANINGFUL EXERCISE! Don't make a half-hearted attempt at doing it for a week or two and then give up because you feel no benefit.
The problem with your ideas comes when we are doing something so complex that we cannot think of all the details of the movements involved! You are correct in one way - I have learned that if I think intentionally as i move, things go much better. However, some of the more complex activities I do are impossible. I give you playing the pipe organ for example. I have a performance degree in this and i had to give it up several years ago. To play well, the performer MUST rely on muscle memory - there simply is too much going on during a piece of music to think of every detailed movement! Swimming is similar: I have been a strong swimmer for most of my life, but I can no longer coordinate some of the strokes - cannot think my way through the coordination.
So I am "reduced" to thinking my way through every day movements, such as getting in and out of a car, or climbing a set of stairs. Yes, I can think intentionally about those movements, but the process is exhausting, and if I am distracted by anything or anyone, the results are sometimes less than ideal. We don't live in a vacuum - I believe interaction with other people and with a less-than-predictable environment is important enough to warrant at least the occasional dose of meds!
Hi Vivace. I have not said that learning how to take conscious control of our movements is easy. IT IS NOT! It takes time, lots of it. For everyone who has tried to take conscious control, they will all agree, not necessarily here, that some of their efforts were successful. They just have to build on this.
What I was able to do was think of only one aspect of my walking problem at a time. I cannot remember exactly how long I had to just think about pushing up on my left toes, but I am sure it was over a month.
At that critical point, I was then able to think primarily of straightening up my right leg, while I was pushing upwards and forwards on my left foot. This I did for at least another month.
Then, when I was feeling a bit more confident about that aspect of my walk, I did the easiest part of the walking, that was swinging both arms properly, while still keeping an eye on the left foot and right leg.
After all that, I then began to deal with my posture. I knew that I could not think about my posture while I was walking so badly. I had to first sort out the problems I had with the walk itself. Then before I started to walk, I stood up as straight as I was able to; which was not 100% straight. I then pulled my shoulders back and my head up straight. Then I pulled my chin back, so that it did not stick out in front of my chest. Then I started walking, and found that my posture kept returning to the bad posture position and I had to keep checking it out. As time went by, I was able to maintain a reasonable posture, but it took months before i got it where I want it.
Today, I stand fairly upright, when thinking about it, and slouch when not thinking.
In practice, my mind still has to do a regular check on each of these aspects like a pilot does pre-flight checks. He/she knows the routine backwards and checks every aspect of the plane's parts. My mind goes through the circuit of: Left foot; right leg; arms; posture.
Those were the main problems associated with my walking. The next problem I had was my supinating (Favouring the right side of my right foot, when placing it on the ground in front of me). This causes me to get pains in the right side of my knee and the right side of my buttocks. I can consciously place my weight on the inside of the foot, feeling the weight on my big toe at the right foot is pushing up and forward. Within minutes the pain in my knee and buttocks disappears. This helps to strengthen the muscles on the inside of my right calf.
After 17 years of walking in this way, I still have to do the checklist and it will never stop.
Which would you rather do? learn to walk properly , therefore faster, and produce GDNF in the brain, which repairs the damaged brain cells, or take medication and slowly watch your condition getting worse? This is what I think I am doing. It is up to the scientists who WANT TO TEST WHAT I AM DOING!
I can see that this will not happen for a long time, but it has taken me 13 years to get this far, so what is another 10 years? Just think of all the Pd pills being taken throughout the world over the next 10 years and what it would cost to do a double blind trial on my walking solution. I don't have to express why this situation will continue ad infinitum?
Doing a lot of things consciously,takes A LOT OF FOCUS!!
That is really the real work, because once we focus intensly on one thing, the body follows suit.
The complexity you are talkilking about Vivian, all I want to say to you in the deepest of respect is, take on movement at a time, and focus on it until you have it done, like John saidl
True confession time:
I have been doing my walking like I should, or so I thought.
Then I realized I was meadering on my walks, looking at this and that and litterally smelling the flowers and taking pictures of them.
Then I remember the word vigorous!!!! Oh my, I had ignored that word!! How convenient!!
So last night, with the combination of the word vigorous and powerwalk, I powerwalked for15 min!!!
I felt great ,slept better, and had a great morning!!
I plan on powerwalking first, and then doing a 'smell the flowers" walk in the evening.
I walk best indoors in the summer. I go to a great Senior Center, and we have lots of places to walk inside.
So my beloved friends, remember what John says, focus and vigorous and it takes practice, and you will do well.
I would rather have that going than sitting and feeling sorry for myself. I have been known to do that some, and I really don't like feeling that way.
So, that is my story for today.
Adopt an optimistic attitude, and you will feel so much better.
Hi Eva. It is so nice to see this post of yours. It is human nature at its best. I know how difficult it is to walk fast, especially in the beginning. We all have to start at the beginning. We have to start small and slowly grow till we are managing to do 1 hour of fast walking. That might take 4 months it might take 1 year, but however long it takes the result will be the same - liberation from the shackles that bind us.
Keep it up Eva and tell us all how well you are doing.
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