I'm new here, but already signed up with the 'heart' section after having 2 new valves, an atriclip and a CABG in February this year.I had a stroke in 2016!Whatever next! Parkinsons is the answer - and I'm determined to fight that too with your help - what a wonderful brother/sisterhood you are.
Typing is difficult so I don't post much at all but I've read alot that has helped me so thank you all.
Hi ramotswe;😊 Welcome to this group!I have found a lot of help and friendship here. I hope you do too!
Enjoy 😊 your day!
With kindness, Rev. Eva Gabrielle
That most of the supplements are expensive and a waste of money 💰
My advice is to read up on the effect that energetic exercise has on the progression and/or reversal of your Pd.
My first Pd symptom started in 1963, but because I had been going to the gym for one hour, six days a week, it took 29 years before my Pd was eventually diagnosed. Then I increased the time in the gym to 90 minutes a day and then my Pd started to progressively get worse, much faster than it had been doing. I then gave up going to the gym, because I thought it was not doing me any good.
Then my late wife persuaded me to join her Run/Walk for LIFE exercise organization. Four months later, my Pd symptoms started to improve (Reverse) and four years later most of my movement symptoms had almost disappeared.
I then started to learn how to overcome my shuffle and my freezing and was able to show other Pd patients how to do the same, even though their symptoms were as bad as mine had been.
I was then able to concentrate on many of my movements and bring food to my mouth without spilling it and I was able to write legibly again.
Medication does none of these things, Pd medication only temporarily hides symptoms for a short while, and then you have to take more medication to get the same effect. When you take too much medication, in order to get the same results, you will find you can have very serious side effects for which you may need to take other medication.
My late wife did not have Pd but after two years of doing the fast walking she lost 14 Kgs in weight and gave up needing to take her blood pressure pills and her antidepressant tablets, which she had been taking for many years. So, fast walking helps us to become a lot healthier.
My goodness your anti medication crusade is tiring. The fact that you think it's even close to feasible for long term PWP to exist with some quality of life without medication (irrespective of how much walking they do and at what speed) just further reinforces the view that you are not a PWP.
I am not against medication! I am trying to hammer home the fact that medication ALONE will not reverse the symptoms of Pd!
If a patient wants to reverse his or her symptoms then they can still start exercising and, while doing that, they will know when or if they can start to slowly come off the medication, because if I am correct, which I feel sure I am, he/she will not need as much medication the more they carry on doing the exercise.
Who, in their right mind would want to continue taking medication, with no hope of improvement, only continued decline?
No one WANTS to take medication but the reality for PWP past a certain disease duration is that they NEED it to simply function.
"I am not against medication!"
You are extremely negative about medication in 90+ percent of your posts.
"I am trying to hammer home the fact that medication ALONE will not reverse the symptoms of Pd!"
Why? When was the last time you came across someone that actually thought that medication alone was the best treatment for PD? Why do you need to constantly hammer something home when literally no one (definitely no one on HU) thinks the thing you are supposedly arguing against?
You say that fast walking "reverses" your symtoms but medication merely "hides" them. Yet some people literally need medication before they can walk (nevermind fast walk).
I appear to be the ONLY ONE trying to persuade Pd patients to try the fast walking route before taking any medication! That is when they are being advised to take medication. I have not come across anybody yet who has been advised to try doing the fast walking.
Every day, several people are diagnosed with Pd, and every day the only place they will see warnings from me about that choice. Is it a sin to make people aware of this choice?
I think it's a sin to mislead people. You consistently represent that if people do the fast walking, they'll be able to avoid medication forever or come off medication permanently if they have already started. You do this by mentioning, without fail, that you no longer take any PD meds and that you were able to leave them behind thanks to fast walking. Youve done it again here, suggesting that PWP have a choice between fast walking and medication.
But it is incorrect. No one credibly diagnosed with PD will be able to avoid medication. The simplest way of proving this to you is that 17 years after your book was first published, what I assume is thousands of book sales, what must be thousands of forum posts and by your own claim, thousands of people around the world "doing the walking", you are unable to identify a single other PWP that has been able to abstain from using PD meds for more than 10 years after dx thanks to fast walking. What are the odds? Honestly, John, if people were out there repeating your success, they wouldnt just be telling you about it, theyd be sending you gold bars in the mail.
What about this: you are surely aware of the trials that suggest that other types of exercise have a progression slowing benefit. Why are you unwilling to promote these and ONLY willing to promote "fast walking"?
Hi ChisWF. Your statements are completely inaccurate.
I do not claim " if people do the fast walking, they'll be able to avoid medication forever or come off medication permanently if they have already started." I do say that "If they do fast walking they stand the chance of being able to reduce their medication and even to come off it, as I have after ten years.
Show me any of my posts where I have made the above claim.
Not all Pd patients are able to walk fast! Not all Pd patients are even prepared to do fast walking for one reason or another.
To make the statement, "No one credibly diagnosed with PD will be able to avoid medication. " is utterly false. Are you claiming that I was not diagnosed with Pd? Do you claim that I did not come off all my Pd medication?
Yes! I have sold thousands of books, close to twenty, of which I am very proud. Have you not seen letters, quoted in those books from people who have turned their lives around? I regularly get emails from very happy people who have turned their lives around. I am sure there are many more who have done so.
I have, with the permission of all those people mentioned in my books, to publish them in my books, together with their names. There are many people who don't want their names mentioned, for whatever reason, which I honour.
I don't know where you live and what your beef is, but I most certainly have done everything I have claimed to have done.
There have been many trials done by scientists that have proven to reverse many of the Pd symptoms, which I believe does not go well with people with vested interests in others having to take Pd medication.
It is perfectly true that every Pd patient has a choice, at the time of diagnosis, whether to take Pd medication or to start living a healthier lifestyle by doing fast walking.
I doubt very much if I have done more than a couple of hundred forum posts. Yes! I have answered hundreds of posts, mainly doing what you have done, but never to mislead patients, but rather make them aware of what is POSSIBLE!
I never ask patients if they have completely come off their medication, because that is not the purpose of my posts. I encourage people to avoid starting to take Pd medication, for obvious reasons. I encourage them to reduce their medication as far as possible. I am sure that others out there have come off their medication and if so, I would like them all to tell us about it,
"Have you not seen letters, quoted in those books from people who have turned their lives around? I regularly get emails from very happy people who have turned their lives around. I am sure there are many more who have done so."
So you regularly get emails, but never one from someone that has been able to discontinue medication? Says it all, really.
So what PD meds did John take! What strength and for how long? He always alludes to stopping PD meds but never says what. I think he was only on eldepryl. He wrote:
“I took Selegiline for ten years. I have no longer needed to take any Pd medication for the past twelve years! In my mind, Selegiline is the only way to go. But I can be wrong! Maybe Azilect (Rasagiline) is the best way for you. Parkilyne is a generic of Eldepryl, and that might also work for you.
You must not just look to take drugs to help you with your Pd! Fast walking is the only known way of reversing Pd. NO FOOD OR MEDICATION OR SUPPLEMENTS HAVE EVER BEEN TESTED AND PROVEN TO REVERSE PD!
So go for the only known way of reversing your Pd. If you are serious about wanting to help yourself then get my book, 'Reverse Parkinson's Disease' from my website. I am not on this website to sell my book but it is the quickest and cheapest way of tackling this terrible problem.”
Some unsubstantiated claims made here too.
Hikoi! You either have a short memory or you are being opportunist. Any opportunity you get you make accusations. All we have to ask ourselves is why do you do this?
The answer is you want to sow seeds of doubt in other patient's minds as to whether or not I have Pd?
Let me refresh your aging memory!
For the 1st two years after diagnosis, I took sinemet and symmetrel. Then my neuro took me off them, at my request, and put me onto the Selegiline, which I took from 1994 to 2002. Altogether I was on medication for ten years.
You are right John, i dont believe you have PD.
I have never read that you took amantadine before! How your story changes!! This is what you constantly repeated a while ago.
“I took selegiline for ten years, with no other Pd meds, other than in 2002, when my neurologist advised me that I will be needing to take sinamet, as I had been on selegiline for a long time, and would be needing the sinamet. I took it for three months and becuase it did nothing for me, I stopped taking it.
“
On the contrary, my story has never changed. What is in my book and what is in every post on HU has been what I wrote here.
People like you think I am claiming to be cured! I have never claimed to be cured. I have been diagnosed by four different neurologists over a period of12 years, because nobody believed that Pd can be reversed, therefore I did not have Pd!
That might have been the case in 1992, when I was diagnosed. But that is no longer true. The study carried out at Frenchay Hospital in 2003 proved that GDNF placed into the Substantial Nigra considerably improved the condition of 6 patients. The problem is that it is too difficult to get into the brain, because it cannot pass the BBB.
The fact that nothing has been heard about GDNF since that Study tells me that the result did not go well with the medical profession, who appear to not want cures for chronic illnesses, which put enormous sums of money in their pockets, and it is money that counts, not human suffering.
Isn't it incredible? Covid-19 has been with us for less than a year and there are a number of vaccines being tested to stop people from dying. But people don't die from Pd and Alzheimers, so why find a vaccine for them when they can treat the symptoms for many years. Nobody makes money when somebody dies.
I sincerely believe that my brain produces more GDNFas a result of doing fast walking, which is not natural. So far it has stayed my belief, but two things point in that direction. My first symptom started in 1963, but I was only diagnosed with Pd in 1992, 29 years later. That may because of all the exercise I had been doing during those 29 years. Then I increased the amount of exercise I was doing, but my symptoms got worse over the next two years, That is when I stopped going to the gym and started doing fast walking. Within four months, some of my movement symptoms started to get better and continued to do so until they almost disappeared.
In addition, when I stop the fast walking those movement symptoms start to get worse.
I rest my case!
I never said you claimed a cure. You are incorrect about GDNF. And yes we have heard about GDNF since 1992. What about the recent GDNF trial in UK. There was even a TV programme on it.
Not being able to throw a ball is not a PD symptom.
In what way am I incorrect about m GFDNF? Which trial are you referring to?
Not being able to throw a ball is a coordination problem, which is part of Pd, the same as walking problems.
This trial
youtube.com/watch?v=XDawNrR...
Interesting. Thank you.
There are no dates indicated. Is it currently still running?
If fast walking produced GDNF that then "reversed" Parkinsons in the way you claim it does, you would be able to point to at least one other PWP that has replicated your result (20k book sales and 17 years is more than enough trial participants and time). You cant, so it pretty clearly doesnt.
Read all you can and know your new companion. Make informed decisions. Medicines will not save you only aid you to live your life as fully as is possible for you.
Exercise n more exercise- use it or lose it. I take B1-thiamine and mannitol.
Read this websites informative pages.
Do you take any other meds - tell about your experience. I am not taking anything yet, apart from an anticoagulant for my atrial fibrillation.
I take madopar controlled release am and early noon (so 2 a day).
Azilect
Mannitol
Thiamine -B1
Tumeric
Cuq10
I in summer swim 50 lengths of pool every other day- out of swim season i run 2-3 times a week. I practice yoga and am about to start Qigong.
I gave up work and moved to rural france getting away fromstresses of work. I live with my two dogs and exercise them twice a day. I also hv huge garden and grow my own fruit and veg i alsogave up eating meat.
I have a gd simple life and keeping stress away and how you live is as important as popping the pills, they won't save you alone- you need to work at it.
My life occupies me all day i dont have time to go to work- i am active all day.
Gd luck get your balance right and accept your diagnosis and be at peace with it- it makes it easier if you dont fight.
Thank you. Your regime and approach seem exemplary to me. I'm trying to be as focussed on clearing out anything that isn't important - tai chi and meditation help. Did you have walking difficulties at all? I was very active before I had my successful heart op but now feel as though I'm learning to walk all over again. I have other things to say but must rest my arm!
I hope you're well
I was diagnosed at 53 so at an active age. I wouldnt worryabout what before etc it all about now. Time to get moving and get fitter the more you exercise theeasier it gets.
Thanks - I'll embrace PD and I'll keep moving. Maybe I'll overtake some of those symptoms!
I would say research and read all about PD, take advice from your movement disorder specialist or NeurologIst and then take a while to digest what you have been told before starting with medication. It seems that the meds you are initially given are the specialists preference and not enough time is given to see if they really are the right ones for the individual with PD.
At the time of diagnosis you are still under shock and need time to digest information and don’t ask enough about the condition.
Exercise definitely wasn’t what we were advised by our Neurologist initially and we know it is really vital.
This website has been enormously helpful and I am really grateful for all I have learned here.
Wish I had immediately been told about LSVT BIG and Rock Steady Boxing. I found out about them about a year into my dx and feel learning about them earlier could have helped tremendously. Ditto Gluten-free, Sugar-free, and Lactose-free diet. Helped so much but only started it well into my dx.
It took me a year to mourn my old dreams. Now, I understand that you can pivot. Also, everyone is unique in self, body type, size, genetics and therefore disease. Some people are purely naturopathic and some rely entirely on medical advice. I am a mix and that’s because I am looking for anything that works for me. Exercise has definitely worked. I take conventional meds, I am on a special diet and I am looking into a new protocol talked about on this forum.
Hide my illness and get ready for abandonment.
Make sure you have a neurologist that knows a lot about movement disorders. I have problems typing and use dictation for almost everything I write. The biggest problem I have found is when I complain about a symptom, my friends all say, “oh, I have that also.” It really doesn’t help.
I hear you. It’s kind of funny and she doesn’t mean it, but my elderly mother does that. And of course she does have similar symptoms: stiffness fatigue etc. because she’s extremely elderly! So sometimes I have to tell her this isn’t common for my age. I think for people with Parkinson’s we have the weight of knowing That it’s not going to go away. And I think people say stuff like that because they’re trying to be sympathetic or maybe make you feel a little better like oh it’s not that bad because I have it too, but of course it doesn’t.
Prayers coming
I don't know why are people bashing JP. At least he is motivating people for a physical activity! Some people are after him as if he is inciting pwp for suicidal activities
When did you tell your adult children?
Neurologist says probably Parkinsons, no medication as yet, what to do now!!
For those of you who have stopped progression, what are you doing? 
What are your thoughts on B1? Have you tried it?
