So you'd rather trust these guys, eh? http://worldtruth.tv/big-pharma-crim...public-record/

Yeah, there sure are people making money, mainly big pharma and lawyers.

Regarding two recoverees - the neuro of one just thinks it's an inexplicable miracle. The neuro of the other wants to try and study his patient's methods but it's going to take a while to raise funding as there is no pharma involved.

please don't put words in my mouth, i have never posted anything praising big pharma.
i have tried numerous alternative treatments including IV GLUTATHIONE, CHELATION, THERAPY, probably more than you have. i just find it incredulous that anyone wouldn't bend over backwards to document a recovery. Attacking me and changing the subject isn't an argument for this organization imho.

I would be cautious in the extreme about any treatment, either mainstream or complementary, that involves ingesting a substance, either synthetic or natural. Lots of 'natural' things can kill you naturally. And I'm very wary of chelation therapies. But practices such as qigong, tai chi, yoga, meditation are very safe indeed. They are also relatively cheap and effective. The problem lies in learning to develop the self discipline to stick with them when benefits are slow to accrue, ESP if your physiology and biochemistry is compromised by meds. Because these methods are slow to work your life circumstances need to be stable to make the most of them. Many people are pressurised into taking meds because everyone around them wants them to function now. But there is a big price to be paid for functioning now, without due regard that you might have to pass 20 or 30 yrs from point of dx.

Muireann, I am very interested in the lady who does Chi Kung. I learned and practiced Tai Chi Chuan from 1981 onwards, only becoming unable to practice because of balance issues in around 2006. Chi Kung was an integral part of classes, as were a fantastic set of warm-up exercises. At one time I attended 3 taught sessions a week, and for many years practiced indoors and outdoors on a daily basis, and incorporated many of the moves into daily living.

I can still do a complete 360 turn in two moves if I think 'tai chi', and it is one reason that I did not progress fast, I was able to function reasonably till relatively recently. I also practiced a yoga until that too became impossible because of creeping rigidity. And other Chi exercises, diet, and chinese herbalism.

This did not prevent me developing the early symptoms of PD. Within 3 years I was no longer able to sit cross legged, I fell backwards. A wall was a useful prop, but I was getting less and less mobile and nothing that I was doing made a bit of difference. I had acupuncture weekly prior to diagnosis, it would last about four days then wear off. The only time I would take western medicine was if I got a migraine.

For a while Tibetan medicine helped in a limited way. The best advice that I was never able to follow came from my Tibetan doctor, who told me I needed to walk slowly, every day for at least five hours. Given the 18 hour working days I was putting in nearly everyday of the week, and bringing up a child on my own, this was not possible, but may have been the best 'alternative'.

I underwent a whole bombardment of tests for all sorts of things between 1996 and 2003. Reluctantly I tried a few muscle relaxants, no result, and eventually a doctor decided I had fibromyalgia. A treatment for this at the time was a low dose of amitryptilline. It nearly killed me.

The only thing, western or otherwise, that made any difference at all was a small oval pill, sinemet 50/12.5, given to me as a trial, which I took with little real hope of it doing anything at all. By the time I saw the doctor a second time two weeks later I was so grateful I could have kissed him.

I understand all the problems with PD medications, and why and how people are looking for something better, but the face I wake up with is unfrozen by sinemet, and underneath the PA I have also developed, the slowness and rigidity is also very much helped.

I have not been able to square any of this with my own natural inclinations to self care like Tai Chi and Chi Kung. The fact is though that they have not protected me from either of my conditions, nor did the mindful way I was leading my life.

Today, with increasing impairments I am less picky. I use what works, and do what I am able to do, which is relatively little, and hope that I can wangle my B12 jabs a week or two early, because it looks like they work too, if I can get them often enough.

I watch the video with the lady who is doing chi kung, and know that I wish I still believed it would help me. I started a course of chi kung around two years ago, and was completely unable to sustain it.

Maybe these things are very useful to people who have not encountered them before, and who are perhaps not particularly body aware. I know they are designed to work that way. For instance Tai Chi was designed for older people, to help maintain flexibility, and health.

I loved watching clips of people in the parks in China practicing, and once thought that would be me in old age, doing the same here in England. I still think it is brilliant for maintaining general health and flexibility, but do not believe it will bring recovery or a cure. I wonder how many people there are in China who look out of their windows and wish they could do the same things, but cannot because of degenerative conditions that neither western or eastern modalities yet have answers for.

Lindy

Soccertese and others,

I just posted my trip report from the Robert Rodgers 3rd annual Parkinson's Recovery Summit in Santa Fe. He's an awesome guy and not in this to make money! Perhaps "recovery" is too strong a word, but he definitely has catalogued many tools and practices that can reduce PD symptoms. His weekly internet radio show is free and archived for download. His new 2013 edition of the "Road to Recovery" is 368 pages choc full of useful info from the many guests he has interviewed. His mother had Parkinson’s and his passion is to help persons with Parkinson’s feel better using approaches that are natural and have no side effects. It's great to know there are alternatives and complementary practices to traditional western medecine.

-Brian

Lindy,

I hear what you're saying, loud and clear. But as my TCM practitioner said to me recently, "nothing I do in here - acupuncture or tuina - is going to work, ultimately, if you're b12 deficient". That seems to apply to you and me both Lindy.

Secondly, the two people I know who recovered through qigong practiced different types. It may transpire that people need to have individually designed programmes rather than all do the same thing. This means any scientific investigation would need to address this issue.

Thirdly, working an 18 hour day and being a single mom is exactly the kind of 'overwhelmed' circumstance that does not allow for slow working treatments to be explored. The solution is a more creative approach by the State to social support for those going through an illness crisis. Bianca Molle acknowledges her good fortune in being a retired schoolteacher living near the Chi Center. Howard Shifke acknowledges the unstinting support of his wife. These are not negligible factors but differences that make a difference. Both Howard and Bianca recovered thru qigong.

i'm sure that many useful tips to reduce pd symptoms were presented, i imagine anyne would feel better from tai chi, etc. yes, i resent the use of the term "recovery", i think taking sinemet, containing naturally occurring l-dopa is "natural". glad you enjoyed the get together. i also doubt they invited anyone who had no success with the "treatments" you mentioned and i ask again, how many of the presenters are making a living off their pd and have fully documented their diagnosis and improvement? the placebo affect in pd is huge but transient.
always the skeptic. i wonder how many at the get together are seeing neuros and have rx's for pd meds?
why does having his mother die of pd and "caring" make him qualified to give pd advice or sell a book?
the first thing i was asked at any clinical trial i applied for was to document when i was first diagnosed and who my GP was. any independent verification of pd is conspiculously absent by the speakers.

Hi Muireann,
Yes I am B12 deficient now, but I do not believe that I was when I first developed PD symptoms, as I had plenty of energy, and continued to be that way for many years. My first symptoms came when my son was a pre-schooler and I was at university studying art, and really enjoying what I was doing. By that time I had already been doing Chi Kung and Tai Chi for 12 years! And meditation too. It was almost like a puzzle I was trying to solve, why could I not go down stairs easily when going up stairs was a doddle! All the health conditions I knew of at the time said it should be the other way round. Though I know B12 issues come on slowly I am firmly of the belief that they are much more recent, they feel functionally different to the symptoms of PD.

I met someone else who followed the same school of Tai Chi as I did, and who also really loved it, who had PD. She found, as I did, that with the onset of symptoms there came a strange flatness to practice. I only met her three years ago and was quite surprised at how similar our experience had been.

I do believe that there is a place for such therapies, but I would never think of them as recovery/ cure or ask anyone else to. If people do recover through great effort and special circumstance, then I am more than happy for them. As with forced exercise, there are some remarkable stories. That they are going to work for all is another matter. I sort of have difficulties with things that say if you put immense effort in then you will get amazing results, and if you don't and there is some failure because you are not actually doing it right, or not putting enough into it. It comes a little too close to saying you got PD because you were getting things wrong, and now you are keeping it because you are doing things wrong, and I just do not think that PD is about that. There are plenty of voices that encourage people to do all sorts of things, and many of them, by their nature, do make people feel better about themselves, and the way they live their lives. Whether they will prevent the progression of PD is another matter, though they could well put off that progression for several years. They are worth doing, because they are good for maintaining health anyway.

Even though I was a presenter at the Summit in Cinci in June...I do not consider myself "Cured" ..my symptoms are there in stressful situations (and if I get sick or have pain or get low on the natural l-dopa that I extract from the fava plants). Alot of the presenters still had some symptoms also, but they are able to live normal lives without pharmas like me. The chi gong does have merit...watching what they do I found that my body has taught me to stretch in certain ways to relieve symptoms, and the moves are very similar to what they do. Alot of the problem that this solves is a blocked energy flow. (which I do not fully understand, but know that it is a real thing in our bodies) If my left arm stops swinging and I notice it right away (because I feel off balance) I can stretch it across my body ...grabbing the left wrist with my other hand and pulling it firmly into the longest stretch possible and hold there. In seconds, it seems like, it is swinging again and I am straightened up and walking better. Can't explain it though...but it works.

Lindy,

All I can say is that Howard Shifke and his family used tcm all their lives and he too was a long term practitioner of qigong before dx with pd. But he had to research and train himself up in new forms of qigong to effect recovery. Then there are others who have recovered by different means again, the common component seems to have been finding a way to remove anxiety. Needless to say, the further into a dx of pd, the bigger the challenge.

Soccertese, to paraphrase Dr Joe Dispenza, if you're waiting for science to give you permission to try something new, then you've turned science into a religion.