The more I look at this site, the more I see alternative / complimentary / etc. therapies.
Am I alone playing the game straight? Synthetic not natural? Is it a cultural or country thing? What am I missing?
I'm a Brit, has that something to do with it?
Expectation, the game of choice.Some serious ideas injected with humour
youtube.com/watch?v=VO6XEQI...
This guys good, feelings of empathy.
Hello, fellow Brit here! You're not alone. I'm content to use mainstream drugs provided (free of charge) by our NHS. Alternatives seems rather alarming, although I make good use of excercise, good food etc, and treat myself to an occasional 'feel good' massage.
hi grey....to be honest i dont know where people get the motivation or energy to look for alternative products. i drag myself up in the morning, breakfast, shower, dress, tidy round as much as i can,have lunch,try fit in a walk or if not send emails, pay bills etc, dinner , the whole day is at half speed, by then its time for bed where i probably wont sleep or wake up early and so on.... i wouldnt have the energy to study these things....so i take mainstream drugs but im wondering is there a wonder pill out there that i dont know of as some people are really on the ball where it comes to these things. i think they are all wonderful and i wish i could do the same but i cant...
Hi, I live in good olde england and I too only take what is provided for by the N.H.S, I too try and exercise on my bike at least 5 days a week and eat a fairly healthy diet.
Hi. Yet another Brit here. I, too, rely on the NHS for my drugs. I have not the time or the energy to research alternative treatments. I suppose my attitude would be different if I lived in an area where I did not have such good access to Consultant, Parkinsons Nurse and my own GP. I also have regular appointments with a Parkinsons Physiotherapist. I try to eat healthily and believe that exercise is a must.
Though I am not always able to do as much as I would like.
Hi Grey. I was born a Brit, but left England in 1952 at the age of 17. I don't think you and I think the same, so it cannot be because we are Brits.
I am a person who never accepts standard practice if it does not work. So far, standard practice for the treatment of Pd does not work. It fills the coffers of the drug companies but does nothing for us, other than making it worse.
I did not carry out the studies on exercise, but when I put this news out there, people who are married to standard practice do whatever they can to pooh pooh it. I don't know why, there is so much anecdotal evidence out there that tells us that various forms of exercise, including boxing, dancing and cycling, have helped to slow down and even reverse the symptoms of Pd. Should we all not be doing something to enhance this news?
I am very aware that drug companies stand to lose a lot of money if patients start getting better, as I have. I don't hold this against them, it is their right to oppose this move. We just have to recognize that right but not to give in to it.
Don't for one minute think that they would not go all out to bury this news? On that score, have you noticed that we can no longer download the "Conscious Brain" thread. All I get is "Oops. Looks like that page no longer exists!", when I try to reply to your posts. Why would that be? Am I becoming a nuisance?
John
What do you do if you can't exercise? After DBS my husband's walking has really suffered and now his Parkinsons has gone to both sides its even harder. We go abroad a lot because my husband gets more exercise there. He has to walk to the restaurant or bar. I do agree with you about the drugs companies though. There probably is a medication that is almost a cure but we won't hear about it.
I'd love to know the ages of a lot of people on this website. Have they had Parkinskons for 21 years like my husband? You look at every possibility if you have.
Hi Jeanie,
I'm 62, diagnosed 10 years ago.
You say that walking has suffered since DBS. Has this been referred to your husband's medics? Does walking or balance improve if the DBS is turned off?
As for execise, do you have access to physiotherapy? They are obviously experts in this area and can supervise exercise, draw up plans, possible advise on local organisations who run suitable classes.
My local support group organises Pilates classes. We have patients at various stages, but all are catered for. If they can't stand, they sit and join in best they can. Basically any extra movement is beneficial.
What country are you from and does your husband use any alternative therapy?
Jeanie,
Also, take a look at these sites
From the UK:
parkinsons.org.uk/content/k...
From the USA:
parkinson.org/Parkinson-s-D...
Hope this helps.
Grey.
His walking is better when his stimulator is turned off but he can't do this for long. We went back to see the consultant who did it and he said it was one of those things. He babbled on about not being able to replace Acetyl Choline artificially but his walking was fine until he had the op done. I saw another lady on the website had difficulty walking too after DBS . My husband had the op done in Bristol in the UK in 2005 and his walking has got progressively worse. I have today bought him a mini exercise bike that he can use sitting down.
As for alternative therapy, he has used Mucuna Pruriens which does work but the last lot we got was hard to get the dosage correct and he kept becoming dyskenesic.
Jeanie, I hope someone with DBS comes along and helps you with your DBS problem.
The exercise bike is a good idea, especially in the winter, I'm feeling guilty, must set mine up and use it!
I'm interested in use of Mucana pruriens and wonder if you could answer a few questions I have:-
What are the advantages of using MP over synthetic levodopa?
How do you determine the strength and quality of the product?
Sinemet has carbidopa mixed with levodopa and madopar has benserazide mixed with levodopa. These are added to slow down absorption by the body, which reduces side effects and increase concentration of levodopa getting to brain. Is there an equivalent additive for Mucana pruriens?
My husband uses it instead of Madopar as a quick fix. Mucuna works quicker and is natural dopamine. We found one particular brand was better that others we have used. Its from Hybrid Herbs, online in the UK. He wets the end of his finger and puts it in the Mucuna. Start small first because it does act like Madopar which is l-dopa I think. If you are from the States I know you can get it there. It has be used in Indian Ayurvedic medicine for Parkinsons for more than a hundred years. You still will need synthetic dopamine too but it is a quick fix.
I assume you man Levodopa rather than Dopamine because Dopamine does not pass the blood brain barrier and so would be completly useless.
Madopar is Levodopa + Benseraside and
Sinemet is Levodopa + Carbidopa.
Both Benseraside and Carbidopa do the same job.
Hi all, thanks for interesting response so far, any non-Brits (whoops almost said foreigners) out there? Alternative / complementary consumers?
At the moment I am completely mainstream with synthesised drugs. I don't have a problem with herbal or alternative therapies providing that those herbal / natural treatments are tested as rigorously and with the same degree of discipline using the same recognised testing methods (that is double blind trials and so on) as the drug companies are expected to use with their products. Hey folks lets have a "level playing field".
I'm from the UK.
Pete, are these herbal / natural treatments patentable? If not, where is the incentive to develop such products?
I don't have any idea regarding the opportunity to patent natural treatments but it would seem that, at least for new products, they could perhaps be patented. I would guess that some of these really old Chinese herbal treatments would not qualify but who knows
The important thing from my perspective is that synthesised and natural equivalents should all undergo similar testing for efficacy and safety.
I am from the US and I use both naturopathic and allopathic means to help myself-why not? and John Pepper a lot of our thoughts and methods are now mainstream and evidence based in the US!
Movinngroovin,
Ah, a foreigner at last! And with alternative products gone mainstream? Can you give example product(s) and shed light on how they become mainstream products.
You refer to thoughts going mainstream, can you explain?
Thanks, Grey
By this I mean the validation of exercise as the key to PD maximizing functioning (see John Pepper). I also always do research myself on products--I've had this thing for nearly 20 years and I believe that my use of alternative avenues has slowed down my progression. DBS in Nov. was the best thing ever though...I also take a low dose of Naltrexone nightly which was a previously approved drug for Heroin addiction recovery(See the book Honest Medicine). It also slows the progression. I always think of the UK as ahead of the curve on naturopathics. What happened with you (just jokin')
All the best..
Hi. You have us really interested in your Naltrexone. I think it is available in the UK for MS. We have a very good young doctor who is looking into this for us but he isn't sure of the dose. What dose do you take moovingroovin? Has it improve your PD?
I HAVE TAKEN IT FOR A YEAR NOW-IT IS TO SLOW DOWN PROGRESSION-I AM AT YEAR 18 NOT SURE WHAT OF THE NATUROPATHICS WOULD BE THE BEST FOR SLOWING PROGRESSION SO I JUST KNOW THAT I WOULD NOT STOP TAKING LDN. SEE THE BOOK CALLED "HONEST MEDICINE" IT IS VERY THOROUGH. IF YOU WANT I COULD EMAIL YOU SOME INFO. THE DOSAGE FOR PD IS 4.5 MGM, WHICH YOU WORK UP TO INCREMENTALLY-SOME FOLKS ARE ON 3 MGM. THE MOST IMPORTANT THING IS THAT THE COMPOUNDING PHARMACIST KNOW WHAT THEY ARE DOING.
Maybe it's because the pharmaceutical world doesn't have much to offer that doesn't have terrible side effects.
Pretty well everything has side effects under appropriate conditions. Take water for instance, drinking too much risks kidney failure. Mind you, you'd have to work very hard to drink enough.
well I've almost never had side effects from alternative treatments. Your answer is pretty irrellevant.
Well of course the example with water is only meant to illustrate the point that most things will react with something under the appropriate conditions. I recall very few side effects from synthesised treatments also.
The following was taken from the first relevant website. No difficult searching for rare examples.
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Natural remedies have been explored all throughout history.
These remedies have been used to provide a natural boost to the immune system, heal injuries, and even cure many painful conditions experienced by the individual. Many have found that these natural substances provide a high level of energy, and improve the overall health in general. However, scientists and medical professionals who have studied these natural remedies for years have stated that there is still a lot of research to be done in order to conclude whether or not these remedies hold true relevance when it comes to the overall health of an individual, or if there are side effects that can be potentially harmful overall to an individual.
Still, there are many who have made some amazing discoveries when it comes to natural remedies. It has been found that substances that were once believed to be effective and helpful to an individual may actually be quite harmful to the body and the health as a whole. Let's take a look at some of the most popular herbal remedies available to individuals today. These include that of Ephedra, glucosamine, chondroitin, and enchinacea. Chances are, you have probably heard of at least one of these natural substances. Well, did you know that each of these remedies have the potential to produce adverse side effects that can prove to be harmful?
1. Ephedra - This is a common natural remedy that was once used as a weight loss supplement. In addition to assisting with complications in excess weight, it has been found to provide effective relief to those that suffer from complications with their energy levels, and breathing. However, after thoroughly researching the overall effects of this substance, the Federal Drug Administration felt is was best to ban this substance for use in the United States. Many experienced severe complications like high levels in blood pressure, strokes, and even heart attacks which proved to be fatal after consuming this product which was once believed to be "safe".
2. Glucosamine - This product has been used by many as a natural remedy to joint health. Unfortunately, many individuals who consumed this product were also diabetics. This substance was found to deliver the same properties as insulin. The body of those who took this product thought that this was insulin and reacted inappropriately. As a result, it caused many problems.
3. Chondroitin - This product has been used in many arthritis patients. Unfortunately, many of these individuals were taking blood thinners at the same time they took this product. As a result, many complications associated with free bleeding and other bleeding disorders were experienced.
4. Enchinacea - This product has been used all throughout history in treating infections of various types. The downfall to taking this substance is that it impacts the immune system as a whole. The individual who takes this will notice that they heal slowly and inappropriately.
Conclusion
There are many dangerous side effects associated with natural remedies - even the most common ones. If you want to experiment with the "natural", it is essential that you ensure that you know exactly what you are up against. If you do, you may be prone to more complications than you bargained for.
- See more at: disabled-world.com/artman/p...
You have a point. I was taking Milk Thistle as an experiment to reduce my cholesterol. After a couple of months I realised I was unusually having a lot of problems with my stomach. My doctor gave me tests for H-pylori that came back fine. Then it came to me that the problems had started about the time I had started the Milk Thistle. I researched the side affects and stomach problems were named.
Here is a link to what seems to be an interesting website regarding problems with natural treatments.
How to decrease levodopa to half pills per dose 
Sleeping pills
Voice recognition software -- better than any pill.
A Report of 10 cases of Parkinson's Disease cured by Xifengzhizhan pills and Xifengzhizhan capsules
Breakthrough Pill for Parkinson’s - Daily Mail
