Letter from Estelle McIlrath
October 2002.A Journey of Self-discovery and Conquest
I am privileged to call John my “FRIEND”. John joined my Art Class, two years ago. A victim of Pd, he was very insecure about his ability to hold a drawing implement steady – his choice of medium was the pencil crayon, which was easier to hold; his format size was small, as was his lack of confidence in his ability to execute what he saw and intellectually interpreted. He was very aware of his “handicap”.
The first art class John attended, was held at the Zoo. John battled with a shaky hand, preventing him from drawing any recognizable lines on paper. He became very stressed, not only with the hand tremor, but also with the reality that animals would not stand still. Somehow, he managed to find a method of drawing the animals in a way that left the observer with no doubt about the subjects.
John is enthusiastic, has a wonderful sense of humor and is able to laugh at himself. He is also stubborn and tenacious. This book celebrates John’s journey from victim to victor! John rose to every challenge I posed, in my perceptually based art lessons. I expected him to give of his best and he excelled himself. He dismissed no problem as impossible to solve.
It has been such a pleasure watching John evolve into a confident Artist, where his ability to execute fine detail in both two and three dimensional artwork is impressive, - which is hardly surprising as the man himself is impressive, showing courage, determination and willpower, which has taken him far beyond the confines of his “handicap”.
John has not only proved to himself, but to all of us, that with motivation, dedication, belief in himself and willpower, you can conquer your fears, limitations and handicaps. I believe that the greatest gift you can give students is to show them that you believe in them. Thank you John for proving that there is no limit to your ability to succeed, when you believe in yourself! It has been a privilege, as your teacher, to share your journey of self-discovery and conquest!
Estelle McIlrath – Art Teacher.
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Blog from Roland Weber on the HealthUnlocked Website
Hi I met John in 2011 after a friend of a friend gave me his contact no. I have had Parkinson\'s disease for approximately 16 years. At the time, we both lived in Johannesburg (South Africa) and after I phoned John to ask for advice, he came to visit me at my home. Only later did I find out that his wife Shirley had passed away 2 days prior to his visit. John is not only very inspirational speaker but also translates knowledge into practical advice due to his own struggle with this brutal condition. I have known John for 4 years now and would recommend that if any one who suffers with Parkinson\'s disease does have the opportunity to meet him, they should!
John is a remarkable human being who has tirelessly and stoically advocated an integrated approach to the management of Parkinson\'s disease. John, I have been one of the fortunate few to have met you and seen for myself what your approach can achieve. I wish you well on your tour - may GOD\'S grace be with you. Roland Weber
Email#1 from Dr Michael W. Jakowec PhD
In the midst of cleaning up my computer email list I came across your letter. It was lost in a file with several thousand other emails. So please excuse this rather dramatic delay.
I read your letter with great interest. In our lab we continue to pursue the role of intensive exercise in influencing brain function. In this case we are interested in both the symptomatic and possible disease modifying ability of treadmill running in PD. A component we are beginning to better understand is the importance of engagement, attention, and learning in drawing benefits from the exercise paradigms we use. We use both the mouse model as well as patients with PD. In the last year we have published new findings in both subjects. Also, we are about to publish other findings including the fact that using a very novel PET imaging ligand called Fallypride we are able to demonstrate that intensive treadmill exercise in patients with PD actually elevates their levels of the dopamine D2 receptor. We are now trying to figure out what is the mechanisms for this and its molecular relevance. I would be happy to send you some of these articles if you are interested. Also, I would be very intrigues to read your book.
I often talk with patients and scientist about the role of exercise in PD and recognize the importance of real-life situations that help drive our studies in the lab. I am happy to pay for it or send you something else in exchange (an Obama t-shirt?).
I hope you are in good health and I look forward to hearing form you. I shall reply much faster next time.
Michael W. Jakowec, PhD
Department of Neurology
University of Southern California
Keck School of Medicine
1333 San Pablo St., MCA-241
Los Angeles, CA, 90033
(323) 442-1057 Lab Office
(323) 442-1055 Fax
(626) 445-8694 Cell
Email #2 from Dr Michael W. Jakowec PhD
you are not alone in trying to convince the medical field of seeing new paradigms in brian function. in fact, it took several years of grant submissions to get much of our exercise and neuroplasticity studies funded since many believed the adult brain especially in the context of disease did not possibly possess the ability to change. I chall look forward to reading your book. My address is below.
With Warmest regards, Michael
Michael W. Jakowec, PhD
Department of Neurology
University of Southern California
Keck School of Medicine
1333 San Pablo St., MCA-241
Los Angeles, CA, 90033
Email from Atomic64 on the HealthUnlocked Blog
Hi John, Thank you for your message. I have been reading your website for a couple of weeks now. I am completely convinced by the method you describe. I have been noticing that I can control my walk (this is before I knew I had PD) if I do what i called a \"deliberate walk\" with swinging arms. I do look as if I am about to conquer a country, especially if I am in boots, but who cares. Before i knew what i had i thought \'why do i need to think about how i walk\'... well, now that i know why it\'s actually easier. Simpler to think that the brain doesn\'t get engaged so I am helping with deliberate action as it cannot be automatic. I am walking far better with sticks, i.e. nordic walking as it keeps my posture up and i don\'t really limp. I am keeping a journal of exercises to see what feels the best. Swimming is great, as is yoga, as is boxing. The only piece of advice of yours (that i have read on your website) I will have trouble with is reducing stress, in this case at work. I have a job which i cannot walk away from yet as i have kids who will need some support for a few more years. On the other hand, doing research for my PhD on the side gives me the relaxation i need and intellectual stimulus you also mention as required. Best, Alex
Email From Danny Loney – Jerusalem
I live in Jerusalem, Israel. It is a fantastic book. I just started reading it and am in Chapter 1. I can't put it down. I don't want to rush through the book, but take my time and understand it fully. Many of the solutions that you have come up with dovetail very nicely with the program that I have developed for myself.
After I finish reading your book, I will write more in detail. By the way, Teva, the company that developed Rasagiline (azillect) is located just a few kilometers from my house. I have been taking it for quite a few years and was one of the first people in the country to start taking it, even before it was approved by the Ministry of Health.
eMail from Daphne in Dorset
30th June 2015
I\'m very grateful for your reply. Once again I\'ve printed it off to re read when my confidence flags! Yes, I\'m walking speeds and distances I couldn\'t have dreamt of at Christmas! In 45 mins I cover 2.75 miles now. On several occasions my voice has surprised me by sounding unusually strong too! And when my brother visited recently he said \'gosh you do look well, no you really look well\'!
Thanks again for the time you take to inspire and encourage.
Very best wishes
Daphne from Dorset
eMail from Fred "John" Gold [firstname.lastname@example.org]
13th October 2011
I purchased the Kindle version of your book and gave my first book review at Amazon.com giving it five stars, it reads as follows:
This review is from: Reverse Parkinson's Disease (Kindle Edition)
Having struggled with PD now in my 7th year, I found a very frank man in John Pepper... telling his struggle, and his findings. His findings resonate with my experience. If I had listened blindly to my neurologists, way back when, I would be struggling with the side-effects of various toxic medications. Doing a bit of homework I took a chance on what seemed to hold out a good benefit (the delay of progression) with what appeared to have side-effects compared to the placebo effect. The drug John uses is Selegiline. I started with Azilect. Both are MAOB inhibitors. That combined with a defined exercise program has given John a reversing of symptoms. I have taken azilect consistently for over 5 years--one month before being legal to purchase domestically. I dabbled with sinemet as well as mucuna pruriens (an herbal source of levodopa) and believe that the best medicine is love, exercise, a wise and healthy lifestyle with, dare I say, a faith in a higher healing power, and for my present use of the MAOB-inhibitor. John appears to represent such qualities...such thirst for healing truth. And wow!...his symptoms arising 45 years ago!
Please excuse my lack of skill in editing this review. I've read many books and a few from those who make great claims. This is my first review of a book that rings soundly of integrity,and I'm greatful to be his first reviewer. Thank you John for the willingness to speak your truth despite how stressors can easily hurt. As my dyslexic friend would say, doG Bless you!
ps the book could have been better formatted in kindle version...but the content deserves 5 stars and two thumbs up.
Letter from Grace Ravno
I belong to the Durban Support Group in Westville. A while back, you came to our meeting and gave a very interesting talk to us. I was interested particularly in hearing you say that if one concentrates completely on one thing, you can actually do it without shaking. You gave a few examples like carrying a very full glass of water and not spilling it, etc.
I was diagnosed with Pd 6 years ago, and although I am not too shaky, I have been getting worse. So I tried the concentration thing, and was thrilled to be able to pick up and carry a full glass of water across a room! I'm also a pretty dab hand serving drinks, when I am on "Bar Duty" at our bowls club. Then I decided to try this in another way. We all know how small our handwriting gets, and also how illegible.
Well, I have been doing Calligraphy for many years, but had virtually packed my pens and paper away because I saw no future there. Until one day I focused totally on my pen, the style I wrote it in, and I shut out all outside noises - and voila! My Calligraphy was as good as ever!
I have been asked to do various writings in various styles and as long as I am completely focused and don't speak to anyone, I am coping very well again. The first project I did, once I got started, was for a dear friend who had forgotten I had Pd. Her expectations were very high, and because of her confidence in my ability, I found I had risen to the challenge with no problem!
So, thank you for encouraging us to overcome our short-comings, and for giving us an extra prop to accomplish our goals. If you ever meet me at a cocktail party and you see how full my wine glass is, I would suggest you don't come and talk to me, because once my focus is taken off the glass, you could be the recipient of a shower of wine!
I am enclosing herewith a copy of "Be thou my vision....." all long verses of it, which I did a few weeks ago. Thank you again for your help in finding a way to overcome "the shakes".
Endorsement from Greg Maier
Email from Greg Maier
Dear Mr. Pepper,
I don't know who this message was intended for; it went out to a number of people, many of whom must surely have your book and, like my wife and I, have read and re-read it and have found great hope and strength in your story.
My beloved has PD, and she was "succumbing," depressed, but I made it my mission to be her biggest "cheerleader,"
her "coach," helper --rather than bog down in the known, quotidian and depressing "realities" one often sees so much of, part of my quest was to find inspirational books by PwP that told of success. Two in particular --John Ball's "Running Hard" and yours-- have made a world of difference!! My Love has been riding her bicycle like crazy, doing Pilates and a little work with weights, and in months she has improved so much!! She frequently tells me that even on hard days she simply recalls your advice to just think about what she is doing, and that when she focuses she has --on these days-- no limp, no trouble using her left hand or, at least, not so much as she might...
"Thank you" doesn't seem to be enough, Mr. Pepper...I've only scratched the surface, but your words and willingness to share your experiences and advice and thoughts has really helped make a WORLD of difference for my wife, for us, and has fueled new determination, hope and optimism. I may one day be her caretaker if I live so long (she was diagnosed at 40 but had symptoms since her mid-30s), but until then I am her yoga and Feldenkrais partner and supporter :) It isn't always easy, but she's gotten much stronger and, so far, has surprised her neurologist. I won't yet claim she has rolled back her symptoms but I think she is getting there because she has indubitably stalled them!! That is, she is not getting worse.
I wish I had another copy of your book because I would post it to you and humbly request your signature and/or a little inscription, it is that important to us and has been such a boon in the "wilderness" --but my Love reads from it every day, certain passages she has marked, and she doesn't like being without it LOL
We're in California and I know you're in South Africa; I don't know about your desire for privacy, but if I purchased another copy of your wonderful book, would you have any reservations about inscribing it to my wife --or even just signing it? It sure would mean a lot.
In any case, we think you are great, a true triumph, and we are pleased to be on your e-mail list and to have your wisdom in our lives with PD which, as the saying goes, my wife may have --but it does not have her ;-)
Very best regards to you and RSA!
Letter from Heather Dos Reis
Dear fellow PWP’s, I have had Parkinson’s just short of 4 years. I took L-Dopa medication for the first 6 months and hated every minute of it. Fortunately I found a Neurologist who took me off the L-Dopa and put me onto an MOA-B inhibitor, active ingredient Selegiline. Then I was fortunate to meet John Pepper, at a talk given by Dr. Norman Doidge. I bought John’s book and totally agree with his theory for more than one reason.
I have an older sister, who has Parkinson’s. She has taken L-Dopa from diagnosis till now; that’s 12 years. Her PD tremors have greatly increased, plus she now has dyskinesia very badly, and a whole lot of other problems – I have convinced myself that these are caused by ever increasing doses of medication, plus inactivity (a total lack of exercise). I am very heart-sore when I compare her to myself, after 4 years and how she was at 4 years - because truly, there is no comparison. Yes, my right hand shakes but I can control it, thanks to John. Yes, I drag my one foot slightly when I am very tired, but that has all but disappeared, since I have taken up walking, three times a week. I have only got to walking 2 km’s (don’t tell John). I am aiming to walk 5 km’s each time, I’ll get there soon, I hope. I do yoga twice a week, on the days I don’t walk.
Now, I have recently had an unrelated health problem, which has kept me from both yoga and walking, since not exercising at all, and eating all the Silly Season food. I am shaking much more and I'm depressed, I don’t sleep well, my intestines don’t work like they should; too much info I know but it’s a fact. This is another reason why I agree with John’s theory. No Exercise, symptoms worsen.
I started walking again and am back at yoga and can’t believe, in the two months of inactivity, just how much I have regressed! But I am going to follow John’s advice, and 30 years down the line, I too am going to have to prove to people that I have, or had, Parkinson’s.
I recommend John’s book to all the new PWP’s I meet.
Heather dos Reis (South Africa)
(This letter was written to the leader of the port Shepstone Support Group.)
Letter from Jules Klette
6 September 2002
You asked about my reaction to John Pepper’s talk (demonstration really) at our Parkinson’s meeting in June?
While cursing my affliction roundly and often, I have to admit to being one of the better-off sufferers; due mostly to a care giver and a family who have not allowed me to capitulate. Also, I have been fortunate enough to have access to doctors, drugs, physiotherapist, and occupational therapists and vitamin supplements aplenty. All this, and yet, suddenly we have John Pepper in our midst, showing us how much more can be done on our own to get on top of this disorder. How to walk, how to talk, how to manipulate eating utensils? Most of us have read casually about these things, perhaps even tried out one or two of the ‘control’ suggestions; but what an inspiration it was to have the example of John right here with us. The impact was tremendous. Apart from being able to identify and work at several of my own needs I was able to witness the walking lessons given to Yvonne. She was made to heel toe, heel toe, lift her feet, swing her arms…………..the results were extraordinary. In the short space of time of approximately twenty minutes she was transformed from a serious shuffler to a walker. She had found it exhausting but was resolved to keep it up.
So if anyone wants to know whether I thought John Pepper’s visit was a success, the answer is a resounding YES.
When I was diagnosed with P D three years ago I wasn\'t shocked because my mother had also had Pd and I had suspected for sometime that I was displaying PD symptoms. But I was very upset and worried about the implications for the future, particularly the impact it would have on my family, my dear husband, Dermot, and my two sons and their families. However, now that it was official and out in the open, I realised I would have to deal with it in the most proactive way I could.
I had known John through Rotary when we were living in Springs and I knew he had written a book about his own experiences in dealing with PD so I contacted him. As luck would have it he was about to pay a visit to Plettenberg Bay within the next few weeks. Seeing John as a living example of how one could take charge of one\'s condition was my first point of inspiration.
After reading his book on how to \'Reverse Parkinson Disease\' I became committed to a comprehensive regime of walking. I was also lucky enough to see a neurologist who insists on biokinetics for his PD patients, so I added this to my exercise regime. I also focus specifically on improving my balance and co-ordination while performing my daily activities. For example, standing on one leg while cleaning my teeth or waiting in queues, typing with my left hand (my left side is my weaker side) when playing bridge on the computer; using my left hand when working in the garden or going about household chores, exercising my voice and my facial muscles while driving, walking on the white line when on the road. Here I must add that I live in a nature reserve so there is very little traffic. I try to eat healthily and take frequent short rests whenever possible in order to maintain my energy levels. I also try to improve my concentration by playing bridge, painting and doing Sudoku. So my \'therapy\' has become a way of life and not a separate entity.
According to my neurologist I have not deteriorated in any way since I first saw him three years ago. In fact I have gained more control in some areas of movement The second time I saw him he was very excited, making me repeat some of the tests over and over again because I had improved so much. The third time he merely said that whatever I was doing, to keep at it, as it was working so well.
A number of my friends remark on the fact that I look perfectly normal to them and Dermot agrees with me that I don\'t appear to have deteriorated. My left side, particularly my hand still shakes, especially when I\'m under emotional pressure or I\'ve indulged in a cup of coffee e.g. but I simply tuck it away.
At times I find it difficult to stay focussed and committed, but then I think about what I’ve achieved and what the alternative could be, so I reassess and press on. Through all this I count my blessings.
I live in a beautiful part of the world. I have the unstinting support of a patient and generous husband and family. And I am extremely fortunate to have John’s support. All these factors combined have given me the courage to take charge of my future.
Email from Pat Hoar #2
Email from Shelley Hultberg
To my amazement my first contact with you was two years ago. I was already set up for exercise since I’d started on Strong Women Stay Young a couple of years before that to help with my ‘lack of balance’. Then the tremor showed up and I was referred to you by Mally Macarty and I read your book—all the way through. The most astonishing thing for me was the list of many things attributable to Mr P (as I call my formidable opponent). I also added Pilates to my regimen and found a grand Pilates trainer in Malmesbury (one who doesn’t think Pilates is the only thing to do.)
And you should see me now. My previous physical therapist is astonished and says I walk like a normal person five years younger. My husband says I am graceful (I like that better). I think my body looks a bit like Madonna with a little less muscle and a little more plump and a lot more sag (I’m 75). I set a goal to maintain what I had but instead I have actually improved. I have taken your advice and been immensely pleased.
And you are right. The neurologists (I’ve been to three) Just are not interested in the exercise aspects. I don’t know why but perhaps we are still dealing with a bunch of doctors who were trained in the no movement period.
I cannot imagine what it must be like for you these last weeks/months. Your sadness (depression sounds so permanent) is palpable. What may I do to help? For one thing I am taking your book down to Louise Coetzee, my Pilates instructor. Can’t think why I didn’t do so before. I wonder if she might have some thoughts about exercise especially for you. So if you hear from her you will know from whence she comes.
Let me hear from you.
Email from Simone Guest
29th July 2012
Thank you for your latest collection of articles.
Interesting that the first concerns treating inflammation.
Recently, I've been doing a good deal of reading around the topic of sugar in our diets. This includes carbs which are broken down into sugar. Sugar ingestion is responsible for increasing our inflammatory response. Think of all the consequences of diabetes - ulcers, effects on vision, and an increased rate of Alzheimers in diabetics.
Googling for sugar + parkinsons disease brings up quite a lot of info. One post on a blog from a man with PD found that his symptoms reduced very significantly when he reduced his intake of sugar and carbs.
I know protein is meant to be the difficult dietary component regarding levadopa. But if you stop to think about the greatly increased consumption of sugar since it was brought to our tables some 400 - 500 years ago . Initially and for a very long time few people would have had access to it but in recent years sugar is in so much of our food (hidden or obvious) and we then add it as well. It is highly addictive (we all love sweet things).
An American called Robert Lustig has a very comprehensive (somewhat long) talk on YouTube on this topic.
Corn syrup is a particularly addictive form of sugar which the americans developed some time back and which is hidden in many processed foods.
I feel that this sugar link needs to be investigated. In the most recent copy of the magazine we receive from Parkinson's UK , Page 7 in the section called Progress, there is a paragraph called
Clues from Diabetes
"There is evidence that people with diabetes have an increased risk of Parkinson's. It turns out that diabetes drugs may also be useful for treating Parkinson's.
One example is exenatide - a drug already used by 6 million people with diabetes worldwide. Lab studies funded by Parkinson's UK helped to show that exenatide could improve symptoms and even rescue dying cells in different animal models of Parkinson's. Now exenatide is being tested in a small phase 2 study of 40 people with Parkinson's at University College London Hospital."
From Amazon I bought this book which I have found very interesting. Diet and sugar intake are a main part of it.
Stop Alzheimer's Now!: How to Prevent & Reverse Dementia, Parkinson's, ALS, Multiple Sclerosis & Other Neurodegenerative Disorders by Russell L. Blaylock and Bruce Fife (1 Feb 2011)
All the best
By all means add my email to your website.
Very interesting that you limit your carbs but still miss sweets and chox. Again, I feel that draws attention to the sugar link.
Gary Taubes (American) has written a couple of books re diet. "Why We Get Fat" is one of them. The Amazon reviews are very favourable, some from overweight people who have never lost weight successfully before finding that the weight just peels away without effort. Some of his articles can be found on Google and are worth looking at. He writes very well.
I remain convinced that the clue to many cases of Parkinson's is not via a microscope or more medication but probably from very basic origins.
Another aspect is adrenal exhaustion which of course also involves food metabolism. Lifestyle is usually a major player here. So many people with PD have experienced significant and lengthy stress before diagnosis. Significantly raised cortisol levels for long periods don't do any of us any good. Most of us experience significant stress at times in our lives and we all have different ways of manifesting what it's doing to us. Some people would develop eczema or irritable bowel syndrome, for others the way of manifestation is much more destructive.
Do the high cortisol levels and the insulin resistance destroy the dopamine producing cells in some people?
Anyway, just my ideas.
y Email from Vivian Branschofsky
Letter from Wilna Jeffery
P.O.Box 650413, Benmore, 2011 South Africa.
09 May 2008
Your book inspired me so much that I joined ‘Walk for Life’ back in 2003, due to the emphasis you placed on the importance of exercise. I still do my Walk for Life, and I still play regular golf, although, at the time of first meeting you, I was going to give it up, because of the shocking way I was playing.
Your inspiration made me take a hard look at my lifestyle and I have not looked back since. I still take only three Stalevo pills per day, and am still able to play my golf, play regular bridge with my friends, and live a perfectly normal life.
So, after being face to face with you, on three separate occasions, my whole attitude towards Pd has changed into something very positive. My family and friends have all remarked on my improvement, since my first meeting with you. You have given me the courage to live a perfectly normal life, despite Parkinson’s, and the confidence to face this condition head-on and not let it get the better of me.
You shared your experiences with me, and in doing so, I found that the tremor in the hand, the aching muscles and the dragging foot, which tripped over the smallest obstacles, were no reason to give up on life! I have searched very hard to see these symptoms in you, but have failed. You have fought and won the battle, and it has given me such hope to do the same.
You taught me two vital lessons. The first was how to walk properly, in order to prevent the dragging foot. The second was how to hold a glass with confidence, without spilling its contents, not that I am a great drinker. You are extremely approachable and natural, and I have felt very comfortable asking you many of my unanswered questions, to which you have given very knowledgeable, yet heartfelt answers, as you have truly experienced what I am going through.
Not only has my physical being improved tremendously, but my mind is that much more alert too. Thank you John Pepper!
Email from Zoe Hall
13th October 2011
I am sorry to bombard you with e-mails every day, but I really have to tell you my news, especially as I think you have played a part in helping me to get this far!!!
I went to see Dr Gardiner yesterday who is my neurologist and I see him every 6 months. He was so pleased with me that I could not resist bombarding you with yet another e-mail.
Just about everything about me has improved since I last saw him. I have put on weight ( very good in my case as I have been painfully thin at times ) my blood pressure is the perfect blood pressure ( very good as it has been way too low) I am generally much better. And wait for this, "MY WALKING IS LOOKING BETTER!!"
He said that I must keep up walking and doing Pilates and tai Chi. I really feel that Tai Chi is helping me too, so this comes highly recommended by me. I think they have adapted the normal program for me, as they see that my problems are a bit different from the standard problems.
I am really having a lot of fun Doing it and please don't make me mad in the future as I can pack a mean punch!