the usual story is always the same. You are diagnosed PD and then you take artidficial dopamine ? When it wors you can enjoy a honeymoon lasting a fzw months or a few years and then eveythiing worsens until you lose mobility andfall down in dementia . I agrée it's a pessimisitic view but it seems that altenative treatments are not taken seriously ( for commercial issues ?) Whatever the reasons , I wonder whether a list of alternative treatments could be built up on this forum emphasizing what has "worked" or is working . Could we iput together our expérience and create a list of successful products ; J
JUST questionsH :How??
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The vast majority of those with Parkinson's take the tried, tested and true mediations which have been proved to work.Yes,like all meds , there are side effects, but only for some people. The risk/benefit ratio is very good.
I am in this group and take no supplements of any kind.
As a disease, the symptoms can vary hour by hour, day by day and year by year, but it is progressive, The dose of meds can only be increased so much, until the side effects become too much.
Some people, and you will meet a lot of them on this website, are so frustrated that they will try supplements and will convince themselves that they are improved . Whether the improvement is due to the supplement, the placebo effect or happened to occur naturally required a huge study. Individual impressions are not reliable .
A fervent belief in something is not proof. Putting the word” natural” in front of something does not make it better. Putting the word “artificial” in front does not make it worse.
So —— what to do? It depends on the sort of person you are. If you wish to experiment, good luck to you. Some on this site are taking over 30 supplements a day. They are convinced that they are better.
So, stay with the tested mediations with known side effects, or go for the untested supplements with unknown effects and side effects.
The below story is what could happen with the tried "tested and true" pharmaceutical medications.
There's absolutely nothing wrong with combining a holistic alternative route to help heal the body systemically. B1 therapy is one of them and I highly endorse it.
This could be the story of a very unfortunate person and we do not have access to the actual consultations or medical records. We do not even know if it is a real person or a made up article. We do know where it is coming from and we do know that it is concluded with a request for donations!
Do not take everything you read online as Gospel truth!!
“Do not take everything you read online as Gospel truth!!”
I concur, or you’d be a gullible fool.
Unfortunately I’ve seen too many evidences of medical incompetence in my lifetime. The system is broken and you do need to question everything if not to be used as guinea pigs by the pharmaceutical industry that skew the stats for profit.
There is incompetence in all walks of life - including internet forums. As a researcher, I also take no notice of the many stories and comments that paint nothing to do with pharmaceutical companies as good.
I said "nothing to do with pharmaceutical companies as good" and not that no drug R & D, production and promotion is ever bad. A world of difference. I personally take both branded and generic drugs, that are all the result of pharma company research etc, to no ill effect.
I hope you do realize someone's good intention doesn't always equate to good outcome, especially when all for-profit entities must report to their shareholders. I am certainly glad for you that your paradigm is intact and obviously escaped harm thus far - and I hope your luck continues. : )
I would've been stuck in the same view had I not seen so much suffering and lost a few loved ones. Yes, I have a low tolerance for incompetence in general, but medical incompetence cost lives and bankrupt livelihood, rarely held accountable.
This video may be enlightening (?) - two MDs suffering unexplained chronic syndromes turning to functional medicine. btw, I recognize the symptoms - thiamine deficiency.
Are you in the USA? That would explain medical bankruptcy. I have seen little evidence of rampant medical incompetency here in the UK but that is not to say that mistakes never happen. Most of us just trundle along with our creaky NHS and get better outcomes than our former colony!!
Condor I agree, if I was 84 years old and diagnosed at 82 you do exactly as you say, unfortunately I am 57 years old diagnosed at 52 and even if a cure is discovered today it will take 10 years before it is on the market then slowing down the course of PD is vital and therefore
physical exercise,
good nutrition,
antioxidant minerals and vitamins, ldopa,
few strictly necessary medicine,
no street and over-the-counter drugs to maintain a good lucidity and motivation in life.
Once again the context and the situation in which we live makes the difference.
Thanks John, it's always a good idea to listen to a wise seaman like you.
To each of us his own adventure
I really appreciate the writers who take the stories to tell from the adventures of their lives.
A writer is first of all an adventurer and knows the aspects of real life.
With life as a sailor and doctor, and let me say it, a little "pirate and vagabond", I'm sure it will be fun and exciting to read this story in your book "Sailing in Stitches".
My Father was diagnosed in his early fifties and took whatever medication was prescribed to him. He had a good life - fishing or supervising fishing to the end. He never took supplements and lived to 82. An aortic aneurism took him in the end - nothing to do with his PD or meds. The day of his death was the first day he got up first and made my step-mum breakfast. Too much exercise!!!
No. His PD certainly got worse but never to the stage where he was housebound. He did survive bladder cancer however. His sister was diagnosed with PD at about 60 and only lasted 7 years - dying from complications of PD
Coconut oil, it was the big thing . Royprop was promoting it also an it was all the buzz . Started by a women with a web site who was experimenting on her husband. After he died she admitted that it did not do anything and the buzz stopped . Many people found relief according to the posts or not .
There are bona fide therapeutic values to MCT and Ketones backed by science. Look up Dr. Dom D'agostino and watch a few of his videos on youtube. However simply adding coconut oil to a poor diet won't achieve anything unless you drastically alter the diet, which most people are adamant to.
I’m taking both prescription meds and some supplements and have had minimal (but definite) worsening in the past 4 years. In the beginning I took so many supplements under the direction of an integrative GP that my whole life revolved around them!
Just hoping it will continue like this or if I’ll hit the end of the 5 year honeymoon period and find it all gets suddenly worse.
I take azilect, madapor, NAC, mannitol (speech and brain clarity) PEA (stiffness), magnesium (sleep and curling toes) and recently b1 (dystonia). Who knows if they work! (Actually the PEA works - you can tell when it runs out).
Also play tennis, read novels, work part time and try not to waste time predicting my PD future.
What I have heard over and over again and research shows that exercise "helps." I have been regularly exercising 6-7days a week--swimming, hiking, stationary bike, weights etc. I have a HR monitor and raise my HR over 70% for at least 25 mins.
There is no particular exercise for all. The point is to do something you enjoy and it is comprehensive. Others have benefited from boxing, dancing, etc.
Did it helped me? I can't say. If it slowed the progress there is no way to tell. Although I was diagnosed in 2013 and I have tremor in my right hand that is slightly showing in my left hand. Also have some rigidity on the upper right side of the body.
I can say for sure that it hasn't cause harm and has helped me in other ways if not reduction of PD.
I have a list of all the supplements my husband is taking on my profile. He was early stages 18 months ago, is only taking 1/2 a sinemet per day now and is feeling better than he has for about 5 years.
It’s hard to know what is helping most but it’s most important to exercise, change diet eliminating all additives, gluten, seed oils (use only olive, coconut, butter) eat organic. Less meat and dairy, some fish ( we do meat night, vege, fish, vege, meat.... )
Most noticeable change in symptoms to date in a short time (3 days) has been Hardy’s daily essential nutrients and recently icariin from horny goat weed. The improvement with these 2 supplements was very noticeable. Of course they come on top of all the other supplements and diet, exercise changes which may be synergistic.
I would say the key thing is getting to an ideal weight and getting your gut working properly.
Agree - exercise, eat clean/healthy, and supplement to find/fill the nutritional gap, and if you're in the USA, do not drink tap water unless meticulously filtered. We're surrounded by environmental toxins, especially glyphosate that's found everywhere especially in food and water.
This is the reason why supplements are needed today to stay healthy while exposed to the growing number of pharmaceutical drugs and antibiotics causing mitochondrial damage and foods are devoid of important nutrients and even toxic compared to the good old days.
The only alternate treatment I know that helps Pd is FAST WALKING, but that usually meets up with the response that it has not been scientifically tested. Who is going to pay for a scientific study on fast walking if it will prove that it reverses the movement symptoms and the patient no longer needs to take any medication?
Why wait to do the fast walking if it can reverses your symptoms. What have you got to lose? Nothing else works, so get out there and start walking as fast as you can, every second day; even if you can only walk fast for a couple of minutes.
For more information, look at my website - reverseparkinsons.net and contact me, it costs nothing!
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