I saw this link recently and I found the ideas interesting. I'm probably coming in very late and you folks may have seen this a long time ago. I'm very interested to hear what you think.
Different take on PD?: I saw this link... - Cure Parkinson's
Different take on PD?
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LeuraPark
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That is the way that I am leaning as an explanation of Parkinson's
I have read Incurable Me by KP Stoller MD. He touches on Parkinsons however he talks a lot about Lyme disease and Alzheimer's and spirochetes. I guess that Alzheimer patients that had an autopsy on their brain all had live spirochetes in their brain. So, Alzheimer's is a parasitic disease. He gives specific recommendations for Lyme disease and Alzheimer's and how to eradicate it. There are was a Lyme disease thread before and this book could be invaluable to someone suffering from it.
I love his summing up
As a society we have a long way to go before we can consider ourselves conscious and conscientious. We put poisons in our drinking water and our soft drinks, we radiate our food, and still tolerate Big Tobacco and their insanity and allow ourselves to be experimented on without batting an eyebrow. We have put our trust in people who do not have our best interests at heart and are only concerned about money, power and twisted agendas. So, being human, being a sick human ,is a very high risk situation in the world we have created for ourselves.
Food for thought, but I'm not sure about the premises. In particular, some apparently serious work (and peer reviewed publications) conclude that L-Dopa just does not diminish natural dopamine neurons population.
Dr Gershom Zajicek is a rather controversial thinker. I almost fell over backwards (not because of PD) when I read his ideas about cancer!
This seems like it's another of the many PD controversies: whether L-dopa is toxic and actually accelerates neuronal degeneration (see link below). Very disheartening when you have to wade through fake news and alternative facts, specially when it's coming from your doctors!
onlinelibrary.wiley.com/doi...
LeuraPark
i cant get your link to work so unforunately i dont understand your post because i am not sure who you are referring to.
Hi Hikoi
Do you mean this one?
onlinelibrary.wiley.com/doi...
Yes and that one didnt work either. :(. Dont know if you are copying the url link from the actual open page on your computer. I find thats the only way links work. If i copy a link given by someone on a pageit doesnt work for me.
That's got me! I did copy it from the actual open page.
Here it is again, third time lucky, direct from the open page.
In any case it was just an abstract anyway. Not conclusive.
A very interesting approach which spookily I have already worked out for myself!When my Specialist suggested I start Madopar 100/25 TDS I decided only to take one in the morning . As the day progresses I'm usually at home and the slowing down and smaller steps isn't an issue or a problem. If I'm going out and need to be firing on all 4 cylinders I take another one.
Still taking Premipexole and Azelect (and CBD at night. )Along with cycling tennis and power walking I feel in control of PD .I am mindful, live in the moment and still enjoying life to the full.
6 yrs diagnosed, 69 in September and better than I was 6 yrs ago.
I can't change my diagnosis ,I can't stop the progression,but I won't let PD change me, and I'm doing everything I can to slow the progression.
I love life and I love living (even with PD)
Wow Bazillion... in the 2hr pause between your posts you switched channels from the grim scenario of poisoned drinking water, irradiated food, a thriving 'Big Tobacco' industry, human guinea pigs, and self-serving leaders concerned only with money, power, and twisted agendas to... the 'It's a Wonderful Life' scenario of how you're better now than at time of diagnosis (6yrs prior), and how much you love life and love living. Just a hunch but I'm betting you're more fun to be around while you're in your "on" mode. 
If you had bothered to read Parkie13s post you would have seen the first post was a reply to that post on Dr KP Stoller.I quoted the summing up by Dr KPStoller from his article 'incurable me' which Is very mindful and think along the same lines.My second post is in reply to the article by Parkin 13 re
Professor gershom zajiceks approach to treating Parkinsons.
Visiting the European Parkinsons therapy centre in Italy empowered me to take control of PD .PD is living with me ,I'm no longer living with PD.
I really am better than I was 6 years ago when I was living with PD. I could barely ride 25 kms on my bike,only play an hours tennis and having to give up mountain walking, I had extreme fatigue to the point of exhaustion , had to nap every day and depressed with suicidal thoughts.
Since taking control I can ride 50 km twice a week ,play tennis 2 hrs twice a week and power walk In between.Im still able to ski albeit for 2-3 days not6-7. I am no longer depressed and rarely nap.
You referred to on mode?I don't have on /off mode ,,I have normal mode and takes a little longer mode.!
Life's too short to dwell on the past or think of the future ,I am mindful and live in the moment,I live every day as if my last .That way there's no 'if only '
Parkinsons is my inconvenience, and yes I have a wonderful life-which I am thankful for every waking moment.
Can you give us more information on how the European Parkinson's center has changed your outlook on your PD?
The centre uses the 4 pillars approach combining Medical, Physical, Life style and Motivational therapy
The focus of the ReGen Program is to increase mobility, ease symptoms and show you how to slow the disease and adapt to living with Parkinson’s whilst maintaining your quality of life. Sessions are one to one with dedicated therapists. Each patient undergoes an evaluation to help focus the therapy on individual need.
The philosophy of the centre is simple; to empower through knowledge and to show through therapy how to stay better physically and mentally
Now I know John Pepper is always going on about making your conscious mind do what your subconscious does but he's actually right .Its called neuroplasticity and you can learn to do it. It takes time and dedication but it really does work.
You get owt for nowt in this life,you have to put the effort in to see results.
There is no cure,no magic wand ,but accepting PD ,not looking back at what you used to do,not looking forwards as to what might happen,being mindful,living in the moment is the key.
Surround yourself with positive people, negative people drain you and drag you down.
Remember the glass is not half empty or half full it's ready for filling!
BAZILLION: Did you ever take Sinemet? My neuro is recommending I start on low dosages of Sinemet. Age 76, senior male athlete. New to PD
No I haven't taken Sinemet.
I have been on Premipexole and Azelect for nearly 6 years which had been marvellous. in January after 3 weeks in the UK doing b........all(I spend the winter in Spain) I had slowed down a bit. The Specialist suggested I try taking Madopar100/25 3 times a day(which is Levodopa.)
Rather than go down the 3 times a day route I decided to experiment with just one in the morning an hour before my bike ride or tennis .It does make a difference and when it wears off by mid afternoon It's not generally a problem .If I need to be firing on all 4 cylinders for a social evening I do take another one before I go out but if I'm staying at home generally don't need it. I also take CBD before bed about 11pm and if I wake at 4-5 am with pain and /or pins and needles in my arm ,I have more CBD .
As PD is not a one size fits all, I think we as PWP must listen to our bodies and fine tune the meds to suit us. We are not all at the same stage of the inconvienience ,we are not all the same size/weight, some of us exercise ,some don't ,some have other medical conditions,,some have to take other medications,some are on Azelect/Premipexole some are put straight onto Levodopa.
Taking all these factors into account I believe our medication needs must differ.
I'm still out on the 'Levodopa isn't toxic ' advice. When I was diagnosed I was told about 20% of PWP got dyskinesia. Most articles now say most People get them with long term use.
I'm going to stick to doing as much as I can ,for as long as I can ,with as little meds As possible to give me a good quality of life.
Maybe if I was 48 not 68 I would feel differently.
It is a very sad and disturbing situation that we have come to when millions perhaps Billions of dollars spent and thousands perhaps millions of man hours devoted to the study of the cause of PD with absolutely nothing to show for it. No answer , no known cause, not even an indication of the correct direction to look and this theory is as good as any other. Many of us here decided to forget about the cause and instead search for anything that would improve the quality of life for PD patients and many in the medical profession and PD Society did similar. However in our heart we know that real improvement will not come until we find and treat the cause. It is obvious that the existing research system does not work. It is hindered incompetent by bias and accepted established hierarchy and it is time to think outside the box. Money, establishment , and entrenched institutional control over what and who will be funded permeates even Michael J Fox organization and he personally agrees . We must do something different .
Yes exercise is important, agreed , it is not a cure, and it may take many years once we know the cause to find a cure. Here we stand at ground zero, alone with our peers while all the medical establishment and experts seem to have failed and slunk away. It is the way the world works .
Thank you for this post
Try to be happy, you can be happy if you have a mind to.
It may be the only thing you have control over.
Bazillion in reply to
think you might be interested in this article it sums up your feelings and finally doctors are realising they need to take notice of PWP the key to the 'cure' lies with them.
Hikoi in reply to
Gymbag that first paragraph is a bit pessimistic. I think a huge amount of progress has been made in the last 10-20 years.
I take heart when I think of cancer research and treatment which has improved alot in the last few years yet do we know the cause of cancer? Not really because there is no one cause and the cause will be different for each type of CA and each person. Similarly I dont believe there is just one cause of pd nor one type.
Does cancer get cured? I say yes and no. What is a cure anyway, will it be a remission or will it be a total and permanent reversal of symptoms.
But im ever an optomist. That doesnt mean I have to believe in miracle cures or that i will be cured. It just means that overall I feel positive.
Iam ever the optimist but totally agree with gymbag .
Medical science has made a global investment of $23 billion in therapies with the promise to slow down the progression of Parkinson's disease, and the 17 completed phase III clinical trials have yielded little more than disappointment. We need to ask whether the growing number of failed trials might be explained by our single-target and single-disease approach to drug development
Read more at
medicalxpress.com/news/2017...
.I have taken part in several research projects and have been bitterly disappointed.They nearly all involved the same boxticking exercise, the same questionnaires,the same neurological tests and examinations, blood tests ,The people doing the research aren't interested in me ,all they are interested in is whether all the boxes are ticked .
Why can't all this data be held somewhere so time and money isnt spent duplicating it over and over.
Yes from 'research' we know PWP smell( different!), perhaps that because from research we know we loose our sense of smell.!
Research tells us we have unexplained pain,we don't sleep well,we have anxiety,our writing gets smaller,exercise helps, but did millions need to be spentall over the world to tell us what we PWP already know.?
I am reluctant to partake in anymore research as I feel most of the time it's more for their kudos than for PWP.
I am living well with PD because I have taken control of it and hope until they find the cause/cure(I'm not holding my breath!) I can continue to do so,
Yes i can agree its not enough progress and not quick enough.
This article makes bold statements but it is not new knowledge. I heard these ideas a nuumber of years ago. Im sure i have written on personalised tx here in the past.
I wonder how much is spent on cancer research which must be easier than pd. can only really study our brains when we are dead.
It has been unfortunate but Parkinson's has been politicized years and years. Up to about 10 years ago those institutions dealing with Parkinson's would not share information with each other because of their charities. The walls are starting to come down now.
You referring just US or international?
Sorry, the U.S. as far as I know.
Great link, thanks for sharing! I'm just starting with Chi Kung and this info is a welcome boost to my commitment
Interesting, but hard to buy his premise that "medicine does not try to understand PD". One thing easier to agree with is his point that research continues to focus on the "usual suspects" of genetic mutation, autoimmunity, and misfolding plaque - each with their own valid arguments. And the research continues...
Yeah that got me thinking too. I just took it to mean that medicine does not really try to understand a disease without having a point-of-view or (heaven forbid) an agenda. You know what they say... if your only tool is a hammer, all problems look like nails. Or words to that effect.
This video makes perfect sense to me - a year ago I was diagnosed with Lyme and this year with PD - thought there was a connection.... Just wish that Dr. Zajicek provided suggestions for treatment of pathogenic bugs.
Starts by stating PD is caused by a virus and encourages qui gong as treatment because they get good results in China. It ends with telling us to find additional ideas on how to treat Parkinsons in his presentation on Multiple Sclerosis. Id like to see some references and what he bases his beliefs on.
Hmmm
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