You people on this site seem to constantly find new ways to blow my mind.
Hey, it could be just a statistical thing; one out of every 53,126 Parkies gets cured somehow, just by being at the edge of a statistical chart. The rest of us should not get our hopes up too easily.
BUT, then again, I have witnessed PWP get up out of wheelchairs and dance. And Alex Kerten in Israel (military combat engineer, martial arts expert, and unconventional anti-Parkinson's prophet in the desert) -
says 4 hours a day - did everybody hear that? 4 hours a day of exercise, dancing, acting, karoake, martial arts... whatever... all intensely done, and all HERE and NOW - no thinking about the disease or about politics or about what people think about you - 4 hours day for years and years, like you were training for the Olympics or for a concert at Carnegie Hall... that is the kind of dedication it takes; and even then, he is not suggesting longer life; he is suggesting better life while it lasts.. I would vote for that.
Again and again I hear it said that the group hug on Thursday night at 7 p.m. in the basement of the Unitarian Church is very valuable; but if all you do other than that is take your pills, you are toast.
Alex says you have to spend 4 hours a day making yourself into a different shape, physically mentally and spiritually or whatever dimensions you function in. Four hours a day, except the Sabbath. God was completely right about doing something totally different every seventh day. Provided you really do something different, the Sabbath thing is excellent advice, for your mental health, energy, creativity, and not being stuck on the same tune: make sure that every 7th day is special. The other 6 days, if you do not put in 4 hours of happy and joyous effort, you are unlikely to be able to climb Mt. Everest or play the violin on your European tour.
Olie Westheimer and the Morris dancers prove it daily: Remember Olie's commandment: "focus on the dance, not the disease."
I find great relief in cross-country ski-ing, and on cutting down very large maple trees and chopping them up for firewood, even though they say "Do not operate dangerous machinery." Believe me, when you have the Stihl chainsaw roaring at full speed, and the enormous tree is beginning to crack loudly as it begins its fall -- in the right direction you hope - there is no place for any Parkinson's symptoms, and there are none. And you start to feel stronger. And you start to walk better. And in my case, you start to write nasty letters to pharma companies.
How come there was never a clinical study to have 50,000 Parkies devote 4 hours a day of deliberate activity, 6 days a week for three years? Or five years? And see what becomes of them.. We've got Parkies up dancing the tango - one of the most complicated things the brain can ask the muscles to do. Errr, whassup, doc? Amgen got your tongue?

1 out of 53,000 Works for me.
 

Hi Bob,
Thank you for your comments. I agree with you.
I like the odds: "one out of every 53,126 Parkies gets cured somehow" It sure beats the lottery and definitely better than INCURABLE. I never met anyone 100% cured from PD, but there are other pd'ers out there who managed to greatly improved their condition and continue to enjoy life. I think when someone does manage to cure themself completely, their doctor will probably say: "Well obviously, you must not of had PD, because PD is incurable."
It's amazing how "Deliberate activity" positively affects the body. When I go kayaking along the coast, I can go for hours without any problems. I believe when we're active in doing something we love, even if it's just catching ball with our grandkids, our bodies forget we have PD and releases natural dopamine or some other chemical into our system so we can operate so much better.

Namaste,
MAX
P.S. You're in Quebec. I was born in Matane, Quebec and just love it up there.

You're on the path. Like the saying: "You are what you eat", their should be a saying: "You are what you think".
One man who encouraged me to think recovery is possible is Adam. His latest book called "Intention Heals" is quite amazing. I've been to two of his workshops here in Western Canada. You can find out more about him at his website: http://www.dreamhealer.com/

Enjoy life,
Max

Hi Ron,
Thank you for your comments. I’ve always enjoyed your posts. You’re doing incredibly well after having PD for 18 years. I wonder if all your exposure to chemicals caused you to get PD in the first place. Maybe after all these years, your body has gradually been able to released some of the toxins in your body. Do you do anything to detox your body?
Keeping your meds to a minimum (and reducing them) will aid in your body to recover. The more dependent one gets on meds the harder it becomes to create your own. What we’re doing isn’t a cure, it’s trying assorted ways of recovery. Everyone is different.

Enjoy life.
Max

Matane !
 

MAX
P.S. You're in Quebec. I was born in Matane, Quebec and just love it up there.[/QUOTE]

Matane ! Don't often meet someone from Matane. I lived for a few years in Sept-Iles (Seven Islands) on the North Shore; a wild and amazing area.

Hi Joe,
Welcome to this forum. You’re find the members here are quite supportive and loaded with tons of info and experience.
Your change towards a positive attitude will make a huge difference in how you’ll cope with this. I agree that STRESS is huge in affecting your symptoms. I still have problems coping when I get stressed. By now I understand why so I calm myself down and talk slowly.
If your body gets worse in the next coming months / years, don’t get discouraged. Whatever you did, or was exposed to, etc. it will continue to slow down your body. It will take time for your body to repair the damage and reverse the damage. Believe this is possible.
Do what feels right in repairing the damage, work on eliminating any possible causes. Make taking care of yourself your top priority.

It couldn’t hurt.
Max

Joining the conversation
 

Greetings All,
What a wonderful community this is! First time to post here, but I've been following this thread, the one on Mucunas and on Permanent Ear Acupuncture. Sorry this is going to be a long posting!

Quick introduction: My dear pal Jan is 61. She spend 20 years as a professor in China but now has a show-stopping neuro-motor disfunction. I am writing for her, while she is staying off the computer. She has never been given a clear diagnosis of Parkinson's, for whatever that's worth!

Visiting the U.S. in 2000, Jan was tagged by a chiropractor and Rolfer when stiffness and loss of balance kicked in. Then Jan found she was carrying off-the-chart heavy metals and 3rd world pesticide load. Since then, she’s devoted herself to healing and is doing that -- but now faces being dragged down by Sinemet.

Jan had six years of intense healing work sans drugs (by removing mercery fillings, infusions to detox, all kinds of body work, hyperbaric oxygen, Chinese herbs & acupuncture...), then in 2006, seeking to name her condition, did a three month "trial" of Sinemet to check if things would improve. She quit it during a concentrated period of Classical Chinese medicine/acupuncture in Beijing, but crashed and burned after six months. She left China, checked into an assisted living center and, back on Sinemet, she came to live with our family in Portland.

All along, her healing has been remarkable, consistently surprising everyone with regained flexibility and mobility. There's lots of good news in this story. However, in April (2009) the Sinemet started to bite back and the down plunges have become frequent and signs of toxicity alarming.

These past two weeks, after substituting Mucunas Pruriens for 1/2 of her daily dosage of Sinemet, Jan is doing better. We've recently found the NeuroAssist regime and are sharpening attention to amino acids.
Word of caution, though: in switching to the NeuroAssist program this past weekend, she had an allergic reaction to their brand of Mucunas and went into crisis.

We keep learning that the key here is bio-individuality in what helps or doesn't. Jan's using a variety of methods to test remedies but there's more to achieve on this. It is surprising how selective is the body and how often it is necessary to vary brands of herbs and vitamins to find what works for now.

Right now, we're trying to patch together a custom amino acid/Mucunas blend based on which products her body wants. But this is all to stabilize her. Jan's goal is to get off levadopa supplementation, and is headed to Werth's clinic in mid-October for the permanent ear implants. Her neurologist, doctors of Chinese medicine and naturopathy are all intrigued by Werth's strategy and support her choice to try it. They have each offered to track her according to their modalities, to see what changes can be attributed to it.

We are hoping to connect with others of you who have the Werth implants or are considering this technique. Also, since the tricky thing about amino acids is achieving balance, we are quite interested in learning if you've found a general rule of thumb about amino acid balancing and dosage relative to "Parkinson's."

Jan's healing practice includes Rolfing, an osteopathic modality called Jones Strain/Counter Strain, three types of acupuncture, Classicial Chinese herbs, homoepathy, vitamins, Qigong, TaiChi, Eurythmy, good food and lots and lots of walking, etc.

Many many thanks for your posts -- giving us the courage to work with Mucunas and, in general, with dosages on a personal trial and error basis. Hail to Fiona, she's been great in sharing information about the Werth treatment. You all are so inspiring! Surely, where there's a will, there's a way...

Warm Regards,
Trisha

Mixed feelings on reading this thread - relief and reality
 

Hi. I'm a newcomer, to the diagnosis and to this group. Guess I'm still in a bit of denial, in the pink cloud stage. I am able to work out, still run marathons. Only started exercising in 2005 at 58yo after an adult life of sedentary, high stress and overwork. Diagnosed first in 2013, the year I completed an Ironman triathlon. I live in the Vancouver area, British Columbia and am hungrily devouring all the information about delaying progression of PD (exercise, rest, caffeine, nicotine patches, glutathione). Thrilled to discover this valuable group.

Hello Max,
Thank you for sharing your PD experience on this forum. It is great that you have improved so much. It gives us all hope. I also believe that lifestyle changes can affect PD progression and even recovery. I think in my case it was stress that did me in. I was single mother with two children, no family (they are all in Europe) and no support from my ex-husband. I was working full time in a stressful job, taking courses by correspondence, cutting sleep, etc. I was diagnosed with PD four years ago at 58 when I couldn't do much with my left hand anymore (hand tremor started five years before that). Since than my left leg also became stiffer so I started C/L 18 months ago and I am trying to function on 3x25/100 C/L a day mostly because I am still working full time in a stressful office job. I take one at 6:30 am when I am getting ready for work and couple more at work to get me through to 4:30. I try not to take any after that unless I am going out. On weekends I try to take only two. I am experiencing the same problems that you did when the medication slowly takes longer to kick in, not lasting as long or not working as well. My doctor, of course, is telling me to increase my medication. Instead I am changing my diet and notice that after increasing my intake of greens to 3 cups a day my bowl movement normalized and after cutting most of the glutton I am not bloated any more. I try to walk most days at least 1.5hr (not always easy), try to get more sleep but I would also like to try mucuna. Do you order it on line or is it from The Ayurveda Healthcare Centre? Sadly, I couldn’t find mucuna in any of the Vancouver Island’s stores.
Bo

Just saw your post-I'm with you-been doing hot yoga for some time at Corepower yoga in Colorado Springs. Similar to Bikram. Actually used to do vinyasa style with heat but at the moment don't have flexibility or balance. Diagnosed in 2012, I'm 62, went through really bad phase and I have to credit hit yoga for getting me on a better track. Sinemet helps but I think I could reduce over time. Attitude and motivation were never a problem for me but have become more and more. Can't seem to keep it up at home but once I get of my relaxalounger, get to the studio, I know I'm going to do 60or 90 minutes of yoga so all I have to do is get there and I'm committed. I'm finally believing, which you confirmed, that through persistent yoga and other other adjusting my belief system that I could reduce sinemet. I like the yoga also because there is an introspective aspect which allows me to live a more a spiritual way of life. Good and bad days but I have to have the courage to really believe what you articulated so well, that I do have some control over this thing. I'm getting to know this thing pretty well and movement and attitude are the keys to a better condition. More later but just wanted to check in with another "hottie" as we call ourselves down here. Good luck!


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