Because I look as if I don't have Pd, the doctors think I am claiming to be cured. I am not cured but I have lived a normal life for overgtwenty years now. When I stop fast walking, I start to get worse again!
Have you ever been told by your Doctor th... - Cure Parkinson's
Have you ever been told by your Doctor that I do not have PD?
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JohnPepper
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Will this help with anxiety and depression?
I am not a doctor, but my experience tells me that my mental state, when I was diagnosed, was exactly as you describe. That all changed when I started the Fast Walking, with my wife. She got only got a lot better, but she also lost 14 kilograms in weight and came off her blood pressure and antidepressant pills that she had been on for over 20 years. Being married to me is enough to drive any woman into suffering those problems.
My doctor wouldn't have a clue who you are.
What has that got to do with anything?
Well you did ask "Have you ever been told by your Doctor that I do not have PD?"
Why did youy say your doctor would not have a clue who I am? What has tnhat got to do with doctors telling their patients that I don't have Pd?
oh really John!!!
You did not answer my question!
The way you worked it. He's being a wise ass. "Have you ever been told by your Doctor that I do not have PD?" Not "Have you ever been told by your Doctor that you do not have PD?"
How would your doct know whether I have Pd or not unl;ess he has examined me? I would not claim to have Pd if it were not true. What would I gain from that?
Read your post. I read it the same way!
“Because I look as if I don't have Pd, the doctors think I am claiming to be cured.” JP
I think ‘the doctors’ are more likely to diagnose a rampant messiah complex before anything else…
No wonder you have a conscience relating to Pd. You are the most negative person I have come across on this platform. Grow up!
My doctor said she met you and examined you and confirmed you had PD. Dr. Laurie Mischley,
Thanks for your help and support. It might just convince some of the non medical people but generally, the medica; people don't want other people to believe that I have Pd. I wonder why?
Interesting. So now we have naturopathic doctors who focus on nutrition diagnosing Parkinsons.
Where did you get that from?
So these doctors reason that because symptoms are suppressed, a patient whose symptoms are suppressed necessarily must be claiming a cure? That's pretty preposterous for someone to reason, and worse for a doctor to reason thus, actually it would be pretty unprofessional and stupid. Unless of course you told them that you believed you had been cured. Seems unlikely you would do that, is it possible perhaps they just misunderstood or didn't listen very well or the way you said it suggested such? You must know some pretty low rent doctors.
Let me first correct your response. I don't suppress my symptoms, I reverse them, which is proved by the fact that when I unfortunately have to stop the walking, my symptoms slow ly return to previous levels. I have not spoken to any doctor who has expressed the opinion that I do not have Pd. My information about what doctors tell their patients, comes from other Pd patients from all over the world. It never varies. I have also been told that if I look better then I did not have Pd because there is no cure for Pd and if I don't look as if I have Pd then I never had it in the first place.
You make whatever you want to make out of this information.
How do you define the difference between reversal of symptoms and suppression of symptoms? That is not clear from what you are saying. What's the difference?
I am not suppressing anything. THe symptoms are not being somehow prevented from happening. My barin produces nore dopamine, as a result of the exercise, that extra dopamine gives me more movement and therefoe lower symptom levels. If I continue to exercise and I continue to produce more dopamine and continue to have lower levels of symptoms, ai have reversed the direction of the Pd. It is getting better =, which is the opposite of getting worse.
Revolutionary concept: regular exercise is good for you. 😴zzzz
Yes. But does it do anything to revere Pd symptoms?
John - I seem to remember you once said on this forum that one neurologist who examined you said you didn't have idiopathic PD. Am I remembering correctly?
Yes! He is here in Cape Town. He said that I do have Pd but it is not idiopathic. Idiopathic means for wich there is no known cause. I have yet to hear of anybody who knows for certain what vcaused their Pd!
John
That is a very revealing and helpful reply, assuming you have not mis-reported what your doctor said to you. Most of us understand this, but let me explain it for you.
It's why we all say you don't have (idiopathic) Parkinsons disease
The term Parkinsons disease does tend to get used a bit sloppily sometimes. Strictly, most of us are using it to mean idiopathic Parkinsons disease. What you have is another form of "Parkinsonism". Symptoms commonly found with Parkinsons disease - for which there is some explanation (brain damage, tumours, drug induced, others)
Drug induced parkinsonism might refer to symptoms of tremor, bradykinesia and rigidity which manifest as a side effect of a pharmaceutical. Calcium channel blockers, which are used to control high blood pressure, like Flunarizine or Cinnarazine would be examples, but there are lots.
The presentation of a parkinsonism, is initially the same as for idiopathic Parkinsons, disease, but it doesn't have the underlying mystery disease process, and, critically, doesn't progress.
So its not the same at all. By confirming you don't have idiopathic Parkinsons disease, you have confirmed you don't have Parkinsons disease. You have a parkinsonism , symptoms identical to early stage parkinsons disease, caused by a known factor
I had seen 3 other neurologists before I saw the 4th one, many years later. I saw him in 2012, which is 10 years ago. If they had all said I have idiopathic Pd then I would understand you thinking it is peculiar.When I was first diagnosed in 1992 I had been noticing more and more symptoms since 1963, when I was aware that I could no longer throw a ball or a dart properly.. Each time I tried, the object went miles away from where I was aiming.
In 1963 I was a very fit and healthy young man and I have never taken drugs, I never drank then and I had given up smoking in 1961 when My daughter was born.
Exactly my point WtP ( but it will not make an ounce of difference ), I have been saying this for about 6 years. Another sign is that JP says it takes 6-8 weeks for his symptoms to return when he stops fast walking. Also he got no relief from Levadopa medication so the only 'Parkinson' medication he stopped was selegiline.
You forget that I took Sinemat and Symetrel for the first two years.
John, have you ever had a DATScan? I respond well to daily intensive exercise, so my docs suspected I didn't REALLY have PD.
He hasn't. He has confirmed that he would have one if others would pay for it.
Of course, if the scan came back glowing with D neurons then the explanation would likely be that fast walking has either regrown or preserved them in the fashion he is convinced occurs.
What are D neurons?
I am guessing dopamine
Dopamine is a chemical not a nerve cell
No! Do I need to?
John, I think it would help answer critics who say you never had PD.
I am not pleading poverty but in South Africa it costs a lot of money to have a Dat Scan. I dig my heels in when beinng made to spend so much money to please people who are only trying to make others believe that I dont have Pd. If any of my neurologists were to have been in any doubt whatsoever, then I would have had that dat scan'done. If anybody wnts to pay for one to be done I would do so with pleasure. I have nothing to hide, hence I use my name on this site and don't hide behind a nom-de-plum.
Well then I hate to say it, but it sounds like as far as the academic importance or value of diagnostic arguments, your opinion is just that, and not better than any other opinion 7 billion people might have.
The association between your exercise and whatever you want to call it, "reversal" (however you would define that and I'm hoping waiting to hear), on the other hand, seems more useful and concrete, and without regard to whether you have PD or do not have pd. And thus, people can simply take it with a grain of salt until there are more actual facts to go on that arguing about diagnosis needs to have in order to be of any use.
Have you tread the Mayo Clinic Controlled study on the effect of Aerobic exercise on Pd?
I'll have a look.
This manJP is living proof of how PD is still a disease unknown to medical science, no valid scientific argument against his theories. If there was scientific knowledge there would be no discussion. Here are words versus words, no cure versus no cure. Very worrying. We Pwps have always known this and we live in hope and we are with those who give hope , certainly not with those who cancel it … why? because it is better.😄
Greetings from Italy
Gio
Como lake Italy
Thanks! There definitely are Scientific Arguments proving that what I have been saying for over 20 years now is perfectly true!When we do High intensity Aerobic exercise and maintain it for an hour, it produces GDNF and BDNF in the substantia Nigra. That repairs the damaged brain cells and that results in more dopamine, More dopamine means less symptoms.
With all due respect JP but this GDNF which is now CDNF in my opinion does not work. I tell you this because my wife has Retinitis Pigmentosa, a neuro degenerative disease of the eyes that afflicts the cells of the retina where scientific research has tried to use this type of substances and they have not worked. I would like to point out that the eye is an organ that is easily reachable by these substances in large quantities, an eye drop is enough. It did not work! So in my opinion drop this theory of GDNF, BDNF now CDNF, you don't need it.
I was told by a so called neurologist that my tremor pain lack of balance and gait were nothing but anxiety. To "go home and put that foot down"( the shaking one). I had paid him for 3 visits (no cheap)2 MRIs, 1 Lumbar puncture. He had to ring his secretary to get sent a copy of my results as he didnt have it ready on my last visit...It was the beginning of covid and couldnt get rid of me fast enough. Thank goodness i found this forum, started exercice, HDT,B1 and a year later i found a neurologist who saw me online and diagnosed me. He insisted to keep, walking, dancing and trying my best to enjoy...
Hi. The secret of getting exercise to help us get better is to CONSCIOUSLY MOVE OUR LIMBS. Concentrating on moveing each leg forward, while pushing forward with the other leg is good for the whole body. Consciously walking as fast as we can reverses our symptomes, according to the Mayo Clinic Report. It is what I have been doing since 1994 and at 87 I am still enjoying my life. I am becoming very forhgetful and have, what they call, CRAFT! Can't Remember a Flipping Thing!
Yup, John . Focus focus focus.
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