[Shake 'Em Up]

Being a newby to this site, but not to Parkinson's, I thought I'd share a little about myself via my speech, given this past Sunday in Manhattan at a one day program on Integrative Medicine and Parkinson's. Hope you enjoy it.... Shake Em Up

What to do While Waiting for the Cure

Good morning, my name is Cyndy Gilbertson. I am a patient of Dr. DiRocco - so, I listen to him most of the time. I was diagnosed with Parkinson’s Disease on April 26, 1988, more than 20 years ago. When I was first diagnosed the general consensus in the Parkinson’s community was that there would be a cure within 10 years. But ten years later, there was no cure, and the estimated waiting time still hovered around ten years. Now, twenty years later, we are still waiting for the cure that was supposed to have been found ten years ago. That’s why my topic for this morning’s presentation is, “What to do While Waiting for the Cure.

As a patient, my perspective is very different from that of the research scientist. I’m looking for something that is going to help now, not in ten years. The research scientist must take the time to be certain, to prove unequivocally in placebo controlled double -blind studies that a recommended treatment is both safe and offers statistically significant results. I am looking for a chance that something may help, and I am willing to take risks, to expand some safety margins and to spend money on what may turn out to be a fruitless endeavor, or may provide some relief. My goal is to gain time, an extra hour, an extra day, an extra year or five or ten until there is a cure. There is no way for me to know what has worked for me, nor to conclude that it will work for you. One thing is certain, if you take a chance you may lose, but you may succeed.

I must stress that while waiting for the cure, it is important that you do more than wait - empower yourself by taking action! Join a support group, do your own research about Parkinson’s on the internet, lobby Washington and Albany for more research funding, listen to music that increases your alpha waves, try a guided imagery tape, or drink more water. The more responsibility you take for your own health process, emotional as well as physical, the better you will feel. And many interesting world’s will open to you in the process.

There are so many different types of alternative treatments available that it is difficult to know where to begin. This is my story. At the time of my diagnosis, I already had an advantage. because I was familiar with some alternative approaches. I was studying Chinese medicine, taking workshops in Polarity massage, and using homeopathic remedies. I wasn’t frightened or intimidated by the concept of medicine outside the box and I had an idea where to begin. I had a special additional weapon, Fred Zeiss. Fred was a fellow patient I had met at a support group who was ahead of his time. He used something I hadn’t yet heard about, the internet, to scan scores of magazines, professional journals and news items for the latest research on Parkinson’s. He supplied me and many others with a weekly supply of research material that kept my mind open and hopeful.

Many of the press clippings and articles Fred sent me kept making connections between environmental toxins, especially pesticides, and Parkinson’s. The Greater Boston Physicians for Social Responsibility has just published a book, “Environmental Threats to Healthy Aging” in which they state that “the body of evidence linking pesticide exposure to Parkinson’s disease fulfills generally accepted criteria for establishing causation.” This is the first official statement by medical practitioners I’ve seen that directly links Parkinson’s and pesticides. Twenty years ago, concluding that pesticides and environmental toxins trigger Parkinson’s, I developed my own four step protocol: Step #1 - Avoid further exposure to suspicious toxins, Step #2 - Detoxify the body, Step #3 - Rebuild the body, and Step #4 - Revitalize and restore dopamine producing neurons in the brain.

I began with a consultation with a nutritionist recommended by a reputable health food store in Manhattan. On his advice I installed a water filter and began a regimen of antioxidants and amino acids in the dopaminergic chain. I went to see a doctor who specialized in detecting parasites, discovered I had amoebas, giardia, pin worms and a tapeworm, all of which were robbing my vital nutrients. I learned that there was a connection between heavy metals and parasites, so I removed my mercury fillings. I purchased air filters and sought sources for organic vegetables and fruit. This was all part of Step #1 - Avoiding Toxins.

Step #2 for me, Detoxifying the Body, meant finding ways to remove toxins I had already accumulated. I used chelation therapy for metals, cilantro and spirulina for the same purpose, intestinal cleanses and Bio-Resonance. I stayed at the Ann Wigmore Center in Puerto Rico twice where I learned about wheat grass juice, a raw foods diet, purslane, and coffee enemas, all while sorting sunflower sprouts in lounge chairs facing the Caribbean Sea. I left with the mantra, greens, raw greens and more greens, organic, of course!

Step #3 - Rebuilding the Body includes anything from exercise to sudoku. Move and stretch, never stagnate. Feed your physical body with greens, filtered water, recommended supplements, and foods. Healthy doesn’t have to mean tasteless tofu. Add ginger for digestion, garlic for chelation and protection from vampires, with a dash of lemon zest for vitamin C, and, “Voila!”, you’ll be surprised how good tofu can taste, organic of course!
Exercise builds muscle, improves balance, and helps the body to be more efficient. There are free exercise classes offered here during the week for Parkinson’s patients, the Brooklyn Parkinson’s Group offers dance and singing classes, and there is presently a qi gong study at Beth Israel that is indicating very positive results. Feed your mind with guided imagery, meditation and good friendships.

The last step, Step #4 - Restoring the Dopamine Producing Neurons is a more difficult problem, one for the research scientists to resolve. Neurotropic factors, especially GDNF (glial derived neurotropic factor) holdout a promise for success in that area. I find it helpful to keep in mind the image of a polluted stream being restocked with fish, but all the fish continually die. The same goes for our brains. If they are compromised by exposure to environmental toxins, new cells cannot survive in this inhospitable atmosphere. We have to clean up the rivers in our brains before we restock the dopamine producing neurons, if we expect them to survive.

My current protocol consists of regular exercise, weekly acupuncture treatments, a flower remedy, psychotherapy combined with massage, and Ayurvedic herbs sent directly from a farm in India, organic of course! You can develop your own approach to integrating alternative treatments and standard western medicine by trial and error. Take a chance. Do your best to remain alert and open to what makes sense and resonates with you. Maintain you body in the best condition you are able, so that you can take full advantage of that breakthrough whenever it comes - the cure. There are plenty of places for you to start while waiting: I am taking this occasion to recommit myself to drink more filtered water, eat more fresh greens, organic of course, continue to exercise throughout the winter, and to keep myself surrounded by positive, loving friends and family. Please join me in keeping hope alive.
Yes We Can!
Hopefully, soon we will be saying, Yes We Did!

[lou_lou]

dear one,
you have done many of the things that I have done!

your attitude is similiar to mine yet uniquely inspiring!
- if you wish to go into more detail.
I am all ears... as I believe nutrtion (organic foods) not sprayed with toxic chemicals - is a great help, I also take a few Ayurvedic herbs -
ashwaganda, trphala, etc. have you tried aromatherapy?
Such as;
frankincense & myrrh and lavender essential oils, bring life giving nutrients
& calming to the brain as well.


Cyndy are these your links?
http://www.shakeemup.org/downloads/P...mupbrocure.pdf
http://www.pdf.org/var/proyectos/Gil...the%20Cell.pdf

thank you!

[Ronhutton]

Hi Shake 'Em Up,
I have had PD for 18 years now, and have done many of the things you mention. You have had PD a liittle longer, 20 years. What I would be most interested in therefore, is what is your current status, what are you like in the morning, unmedicated. What level of levodopa are you on?
Do you still drive, how badly or otherwise are your movements rigid or restricted? What is your worst feature?
To give you something to compare with, I list my own status
below.
* Currently on 150 to 300mg per day of Levodopa. (But suffer some off time, 3 to 5 hours.
* Can shower and dress unmedicated in the mornings.
* Worst time, evenings, when sometimes I can hardly move.
* Still drive, no accidents for over 25 years.
* Worst function, walking, freezing of gait, ( I can't push through crowds).
* Still holiday regularly, went to Tahiti last year, (40 hours flying time), and booked Orient Express next year to Venice. (Expect to fall in a few canals)
* Sense of balance is bad, had several bad falls. Have a permanently damaged shoulder and elbow.
* Have to use a cane to walk when off.

Hope this helps, will be interested in seeing your comparison.
Ron

[leonore]

Yes, Cyndy was awesome with her opening speech at the all-day "Integrative Medicine and PD" conference on Sunday, the "baby" of our doctor. She and I and another Parkie in our clinical trial exercise class followed up her speech by being on a panel to lead 2 consecutive workshops called, "Information-Swaps" where we presented our own integrative medicine regimens and asked others to share. We both plugged "Neurotalk" and it was wonderful-the room was overflowing with people for the first one, and they were so appreciative. One woman we'd invited demonstrated the goggles, bought from Israel, that help her husband walk better, and which he trains with 10 minutes each day to retrain his brain and help with balance.So here's my hand-out that I used at my part of presentation.
Leonore Gordon, LCSW
130 8th Ave #3A
Bklyn., NY 11215
(718) 783 1986
leonore1234@aol.com
My Personal “Beat-PD” Integrative Treatment Regimen

 Western med’s: Stalevo (carbo-levadopa plus Comtan); Namenda to help dyskinesias; Remeron to help me sleep, and I do.
 CoQ10: 600 mg. daily; turmeric pills (this curry spice, new research shows) helps PD symptoms; Vit. C; garlic capsules, and a multi-vitamin.
 Acupuncture weekly for dyskinesias, and general aches and pains: 3 needles in each of my ears greatly reduces my own dyskinesias; an idea my chiropractor/acupuncturist of 15 years adapted from an article he read about a technique used in Spain. He’s in Brooklyn, in Park Slope, and his name is Dr. John Iozzio, at 718 788 5003.
 I travel to far-off lands on my recumbent exercise bike- 3-4 miles almost every day, and I also do stretches and crunches most mornings.
 PD Dance class weekly, and it’s free! Where? At Mark Morris Dance Studio every Wednesday. 2-3:15, at Two Lafayette Ave. just off of Flatbush Ave. nr. BAM. Sponsored by Brooklyn PD Group. Last class of 2008 is 12/17.
 Exercise class: twice weekly clinical trial at LIU in Brooklyn; trial is still open for next round in January. Call Dr. Becky States or Dr. David Spierer to be evaluated. Email: Rebecca.States@liu.edu or call 718-780-4149
 Qi Gong for Beginners: I watch video (DVD) by Lee Holden, Order at www.exercisetoheal.com. JCC also has Qi Gong classes for PD folks.
 Use of support systems: lots of lunches and phone calls with friends.
 Laugh a lot: watch old re-runs of Seinfeld and a dose of Jon Stewart daily. Laughter boosts immune system. (true)
 Stay creative, and learn new things whenever possible. I write poetry, but you pick your own medium. Any activity of this kind keeps new synapses forming. For artistic inspiration, go to PDf.org. Look at menu on right top, called, “Living with Parkinson’s.” Scroll down to Creativity and Parkinson’s -It is a pretty amazing web site, from a huge juried exhibit/performances at gallery by artists, poets, musicians, sculptors, photographers, etc. (.all with PD), shown at the 5-day 2006 World Parkinson's Congress in DC, Scroll through whole site as you find the time, and click on gallery to see incredible art, and read artists’ stories/bios. Many artists are from other countries. (Note: I have poems about PD on site if you click on my name, under "Gallery.")
 Activism makes me feel more energetic and gives me longer “on” times and fewer “off’s” (while I’m involved in it, anyway.): Through joining Parkinson’s Action Network, http://www.parkinsonsaction.org, you can do political advocacy work to fight for federal research funding to find a cure. I also annually do fundraising for, and participate in New York City’s annual Parkinson’s Unity Walk. This year’s Unity Walk, the 15th, will be on April 25, 2009. You can create a team and begin fundraising now. Contact them by e-mail at staciem@unitywalk.org, or go to Unitywalk.org, or call 866-PUW-WALK (866-789-9255)
 I listen to music, esp. old music I love. Research shows that listening to old favorite music stimulates dopamine production.
 I read a lot, and try to reduce stress by not pressuring myself to do more than I can, which is hard to assess because I bite off more than I can chew every morning, forgetting daily how I fizzle out in the late afternoons. I cancel plans and stay home if that’s what I need. Stress makes our symptoms way worse.
 I try to stay on top of infections if I see my PD symptoms suddenly deteriorating. Sinus or urinary or any other type of infection can inhibit our med’s from getting absorbed. H-Pylori almost did me in this past summer until it was discovered, and treated. Two rounds of antibiotics failed, but turmeric killed it off, finally.
 Staying warm in winter, and carrying around icepacks in summer. PD (reduced dopamine), makes it hard for our bodies’ internal thermostats to self-regulate.

Self-educating about PD: learning from our peers from books, and through use of the Internet

 National Parkinson Foundation's Discussion Corner Forums (http://www.parkinson.org/NETCOMMUNIT....aspx?&pid=467)
 Neurotalk: a website information exchange for PD folks: Click on http:// neurotalk.psychcentral.com..Once on site, look for Parkinson’s thread.
 A new site, designed by someone with PD: www.Parkinsonsonline.org
 A really interesting webcast (among others,) from PDF.org (Parkinson's Disease Foundation), is called, "Mind, Mood and Non-Motor Symptoms of Parkinson's". Worth listening to. to: http://event.netbriefings.com/event/...ives/nonmotor/
 CLOGNITION at http://www.clognition.org/community.htm. It's a must read-a really educational, and, at times, funny, site about cognitive, executive function challenges to those of us with PD
 Superb e-newsletter about international and national news on Parkinson's out of Seattle is: http://www.nwpf.org/AboutUs.aspx. Write to bbell@nwpf.org to subscribe. Phone Toll-free 1.877.980.7500
 Collaborative on Health and the Environment : Parkinson's Working Group .http://www.healthandenvironment.org/...ups/parkinsons
This is an incredibly important group to receive informational e-mail news from. PD Working group's leader, Jackie Christensen, is a friend of mine from Minneapolis, and a dynamic woman in her 40's with PD, who wrote important book: Amazon.com: The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed: Jackie Hunt Christensen,
 Another excellent book, Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease: John Ball: written by a friend in LA, John Ball, who is 62, has PD for 35 years and is still running the entire LA Marathon John and wife, Edna, run charity for LA Marathon, called “TeamParkinson's.”
 And, another book: 100 Questions & Answers About Parkinson Disease (100 Questions & Answers about; by Abraham Lieberman.
 Stay on top of clinical trials! Go to PDtrials.org. or call (800) 457-6676 PDTrials - Parkinson's Disease Clinical Trials
 Get newsletters by snail mail or e-mail, and go to conferences offered by national Parkinson’s organizations:
PDF -Parkinson's Disease Foundation
NPF: National Parkinson’s Foundation: www.parkinson.org, or Toll Free 1-800-327-4545
The National Parkinson Foundation has a wonderful annual early onset-PD conference, called YOPN. It’s a great for families living with PD to meet people and attend workshops, including separate ones for caregivers. Every year it's in a different city.
Michael J Fox Foundation:http://michaeljfox.org/
Mohammed Ali Foundation: http://www.maprc.com/home/default.aspx

[paula_w]

Great work both of you and kudos to your doctor. Thanks too for promoting Neurotalk. It's here 24 hours a day with folks feelings and lives in realtime. The transformation from snotty, competitive attitudes and posts as the Internet took hold ten years ago to what this forum is today is phenomenal. People have a place to go where they feel safe with their thoughts, and don't have to be "up" all of the time.

Cyndy and Lenore, you are hitting all the right topics. We are a handful, and don't like it, but that's the way it is.

Integrative medicine indeed! Right on....

paula

[Shake 'Em Up]

Tena-
Thanks for all the support offered in neurotalk. Yes, those are my sites.
Would love to share more.
Cyndy

Originally Posted by CTenaLouise

dear one,
you have done many of the things that I have done!

your attitude is similiar to mine yet uniquely inspiring!
- if you wish to go into more detail.
I am all ears... as I believe nutrtion (organic foods) not sprayed with toxic chemicals - is a great help, I also take a few Ayurvedic herbs -
ashwaganda, trphala, etc. have you tried aromatherapy?
Such as;
frankincense & myrrh and lavender essential oils, bring life giving nutrients
& calming to the brain as well.


Cyndy are these your links?
http://www.shakeemup.org/downloads/P...mupbrocure.pdf
http://www.pdf.org/var/proyectos/Gil...the%20Cell.pdf

thank you!

[leonore]

appreciate it, Paula! Leonore

Originally Posted by paula_w

Great work both of you and kudos to your doctor. Thanks too for promoting Neurotalk. It's here 24 hours a day with folks feelings and lives in realtime. The transformation from snotty, competitive attitudes and posts as the Internet took hold ten years ago to what this forum is today is phenomenal. People have a place to go where they feel safe with their thoughts, and don't have to be "up" all of the time.

Cyndy and Lenore, you are hitting all the right topics. We are a handful, and don't like it, but that's the way it is.

Integrative medicine indeed! Right on....

paula

[Fiona]

Cyndy and Leonore, you guys are so awesome! Thank you for all your hard work, incredible research, and generosity in sharing. I'll be in touch soon - my dad's back in the hospital so had to fly up here again...

[Damsee]

Hello all, and many thanks for sharing all your experience's.

I'm kind of new on PD and this website, but can only applause the approach taken by you all.

I am Belgian, 37 and was diagnosed PD 1.5 years ago.

The 3 first neurologist's I've met obviously proposed different flavour's of agonist's, which I was not very willing to commit to. I therefore do the following.

I do swim 3 times a week and cardio in a gym (mostly Moon walker which appears to be very beneficial) 2-3 times a week. Focusing therefore on synched sports. Cycling is also a delight as I don't feel any PD effect while doing so which is the most releaving.

I do meditation at night and in the morning (basicaly singing a boudhist mantra and wishing good for the all human kind in general and my friends in particular - trying not to forget myself either) to keep the mood up and the voice exercised.

I love my girlfriend and my friends as well as human kind as much as possible (and it does me lot's of good)

I get acupuncture once or twice a week and actually got implanted recently 15 permanent implants in the ear. regular acupuncture is very beneficial for me for the muscle stiffness, but also for the strength of the signal on my right side (the affected one so far), (allowing full blast on my beloved bycicle). Permanent implants seem to do the job of the regular one's on the stiffness side (including facial) and also seem to reduce the tremor a bit but not yet much improvement's on the signal strength. More might come from those permanent though (who knows and it was done only 6 weeks ago).

I started the cleaning process (I'm right in the middle of some Georgian herbal (my girl is Georgian from Georgia, this little agricultural country sadly on the road of the giant's pipes) dedicated at cleaning the body (supposed to purge Intestin's, Lever and kidney's).

All in all, I can say that I actually do better than a year ago symptom wise, but I don't know for how long obviously.

So far, I kept my regular job (computer freak in Financial monster), but I might consider going toward something more physical and oriented to nature to reduce the stress and keep the physical activity at it's max.

I'd like to know: Have you tried to avoid the chemical medication's for long at the beginning?
Was it sustainable or did you have to go for it eventually - even though you were doing alternatives? Have you gone for it with reduced quantities?

Have anyone of you tried the permanent implant's? To what level (how many of them)? Would you recommend putting a maximum of them?

Thanks again to you all for being there.
Keep it up

Damsee