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Connecticut Parkinson's Working Group NewsletterSpecial Edition October 2003 ===================================================================Support for this newsletter comes from Pfizer Corporation and the donors to CPWG.
Editor: Stan Wertheimer stan.wertheimeratgmail.comInterview Editor: Jeff Lincoln =================================================================== This special edition of the newsletter contains items that we felt needed immediate action, or items whose place is not usually in the newsletter. The item that takes up most of the edition is an index of thenewsletters through August 2003. It was compiled by Dave C. He has volunteered to maintain this index asnew issues of the newsletter are published. His willingness to do the initial job and provide maintenance is yetanother example of a person willing to take on an important job simply because it needed to be done.
I have listed some other jobs that need to be done; they, as yet, have no one to do them. We hope people step forward, as Dave has done. There is also a short note on donations to CPWG and what we use our fundsfor. We depend on donations exclusively.
Several members have bought subscriptions for friends and relatives, as well as medical people in their lives. I explain what it means to subscribe and included a number to call, another example of a volunteer (JudyIovanna) doing a necessary job.
Finally, I discuss Gunilla Norris’s willingness to conduct meditation sessions before meetings for those Our newsletter mailing list is now about 200. Included are members (those who participate by coming to meetings), other PWP, relatives and friends of members, selected doctors, medical people, support groupleaders, and others who have requested that they be on our list. The newsletter is free to all but those thatmembers have selected to send it to; they are subscription holders. Some reasons cited are: to let children knowa little more about PD and how it affects their parents; to inform health care professionals associated with aPWP about PD; to inform friends about PD.
A subscription has been $3 per year. Due to increased costs and more frequent editions subscriptions will be $5 for the coming year, which just about covers our cost. Sending a subscription has the effect ofinforming someone, and usually more than one, due to passing the newsletter around. One of our chief aims isdissemination of information about PD. Hence, giving a subscription is very much in keeping with our reasonfor being. Consider it.
To enter a subscription contact: Judy I. at 203.237.4368 Meditation Before Meetings With Gunilla Norris Starting in November, Gunilla will conduct meditation groups at 9:15 a.m. on meeting days. Sessions will last 30 minutes. Everyone is welcome to attend. You are not expected to know anything about meditation,and you need not come to previous sessions to attend subsequent ones. Gunilla has been doing thisprofessionally for decades; here is a chance to center yourself before a meeting with a well known practitionerat no cost.
Acupuncture, alternative medicine, Jan '01 p2Addictive behavior and Parkinson's, Aug '03 p1Agonists, dopamine, initial treatment, Jul '01 p6Agonists, dopamine, initial treatment, Mar '01 p8Alcohol and Parkinson's, Aug '03 p1Alpha-synuclein, Jul '02 p5Alpha-synuclein, reaction with dopamine, Jul '02 p3Alternative treatments, Oct '01 p3-5Apomorphine, personal experience, Feb '03 p2Automatic body functions, Apr '02 p1-3 Bee sting, beneficial effect, Oct '01 p5Blood pressure, automatic body functions, Apr '02 p1-3Blood test to detect Parkinson's, Jan '01 p10Bone marrow, conversion to nerve cells, Oct '00 p8Book review: Family Matters, Dec '02 p5Book review: Helping Yourself Help Others: A Book for Caregivers, Jan '01 p6Book review: Parkinson's Disease - 300 Tips for Making Life Easier, Feb '03 p8Book review: Shaking Up Parkinson Disease: Fighting Like a Tiger, Thinking Like a Book review: The Correstions, Dec '02 p5Book review: When Parkinson's Strikes Early: Voices, Choices, Resources and Botulinum Toxin Type A for drooling, Aug '03 p2Bowel movement, automatic body functions, Apr '02 p1-3Brain stimulation, FDA warning, Feb '03 p9Brain stimulation, medicare coverage, Feb '03 p12Brain stimulation, personal experience, Feb '03 p4Briggs, Roger, interview, Jan '02 p2-4Briggs, Roger, interview, Oct '02 p1-5BTX see Botulinum Toxin Caffeine with Hormone Replacement therapy, Jun '03 p6Caffeine, preventing Parkinson's, Jul '00 p7Carbidopa + Levodopa + Entacapone - Stalevo, Aug '03 p2-3Care giving, personal experience, Oct '00 p4-6Care Web Pages, Jul '00 p6CDS, Rotigotine patch, personal experience, Feb '03 p2Chronic stress and Parkinson's, Aug '03 p4Clinical research trials, benefits, Jan '01 p1Clinical research trials, personal experience, Jul '00 p1Clinical research, humor, Oct '00 p7Clinical trials, Oct '00 p3Clinical trials at Institute for Neurodegenerative Diseases, Jul '02 p6Communication, CPWG, Jun '03 p6-7COMT inhibitors (Comtan and Tasmar), Oct '00 p1Comtan and Tasmar (COMT), Oct '00 p1Congress and Parkinson's research funding, Feb '03 p13Constipation, Jan '02 p7Continuous delivery system, Rotigotine patch, personal experience, Feb '03 p2Copper and Parkinson's, Aug '03 p3-4 CoQ10, Oct '02 p7CPWG history, Jul '00 p3CPWG history, Jul '02 p3CPWG history, Oct '02 p13CPWG information folder, Feb '03 p10CPWG library, Jul '02 p3-4CPWG mission statement, Jul '02 p2CPWG workshop experience, Jul '02 p1CPWG, information dissemination, Jun '03 p6-7CPWG, name, Jun '03 p2CPWG, Videos of meetings, Jun '03 p4 DaTSCAN, neuroimaging, Oct '00 p8DBS see Deep brain stimulationDeep brain stimulation, FDA warning, Feb '03 p9Deep brain stimulation, Medicare coverage, Feb '03 p12Deep brain stimulation, personal experience, Feb '03 p4Deep brain stimulation, personal experience, Jun '03 p1-2Deep brain stimulation, personal experience, Oct '02 p1-5Dehydaration, nutrition, Jun '03 p2-3Diathermy, FDA warning, deep brain stimulation, Feb '03 p9Digestion, automatic body functions, Apr '02 p1-3Donations, medical equipment, Oct '02 p7Dopamine agonists, initial treatment, Jul '01 p6Dopamine agonists, initial treatment, Mar '01 p8Dorwin, Jackie, interview, Oct '01 p1-2Double blind, description, Jul '00 p1Drooling reduction with by Botulinum Toxin Type A, Aug '03 p2Drooling, automatic body functions, Apr '02 p1-3Dyskinesia, induced by levodopa, Jul '00 p7Dyskinesia, Viagra (sildenafil), Jul '00 p7 Early-onset Parkinson's, parkin gene mutations, Jul '00 p8Eating guidelines, Jun '03 p2-3Embryonic stem cell research see Stem cell researchEntacapone + Carbidopa + Levodopa - Stalevo, Aug '03 p2-3Environmental agent research funding, Feb '03 p13Environmental triggers, Oct '02 p9Enzymes, effect on heavy metals, Aug '03 p3-4Estrogen, Jan '01 p9-10Estrogen with caffeine, Jun '03 p6Exercise, personal experience, Oct '02 p8Exercise, Yoga, Feb '03 p3 FDA warning, deep brain stimulation, Feb '03 p9Fetal tissue research see Stem cell researchFlexAble, MSM with Glucosamine, Dec '02 p3-4Flynn, Kevin, interview, Apr '02 p3-4Folic acid deficiency, Jun '03 p3-4Folic acid, vitamins, Oct '02 p7Frenchay trials, Glial derived neurotrophic factor, Aug '03 p7Funding, Parkinson's research, Feb '03 p13Fungicides with Herbicides, Jun '03 p4-5 GDNF see Glial derived neurotrophic factorGifts, medical equipment, Oct '02 p7Glial derived neurotrophic factor, Aug '03 p7 Glial derived neurotrophic factor, Jul '02 p4Glial derived neurotrophic factor, Jun '03 p1Glial derived neurotrophic factor, Oct '02 p10Growth factor, Glial, Parkinson's treatment, Oct '02 p10 Hallucinations, sleep disturbances, Jul '02 p7Heart disease, homocysteine, Jul '01 p6Heart disease, linked to Levodopa, Feb '03 p8Heart disease, Pergolide, Dec '02 p10Heart nerve cells, related to Parkinson's, Oct '00 p8Heavy metals and Parkinson's, Aug '03 p3-4Herbicides with fungicides, Jun '03 p4-5Homeopathy, alternative medicine, Jan '01 p2Homocysteine, folic acid deficiency, Jun '03 p3-4Homocysteine, heart disease risk factor, Jul '01 p6Hormone replacement therapy and caffeine, Jun '03 p6Hospitalization considerations, Jan '02 p7HRT see Hormone replacement therapyHumor, Jan '01 p2Humor, for clinical research, Oct '00 p7Hydrocarbon solvent exposure, Mar '01 p6Hydrocarbon solvent exposure, Oct '00 p9 IL6 see Interlukin-6Impotence, Apr '02 p1-3IND see Institute for Neurodegenerative DiseasesInformation dissemination, CPWG, Jun '03 p6-7Institute for Neurodegenerative Diseases, Jul '01 p5Institute for Neurodegenerative Diseases, Clinical trials, Jul '02 p6Institute for Neurodegenerative Diseases, Research Vision award, Jun '03 p2Interlukin-6 and Parkinson's, Aug '03 p4Interview, Jackie Dorwin, Oct '01 p1-2Interview, Kevin Flynn, Apr '02 p3-4Interview, Roger Briggs, Jan '02 p2-4Interview, Roger Briggs, Oct '02 p1-5Iron and Parkinson's, Aug '03 p3-4IRS Tax exemption, CPWG, Feb '03 p1 Keyboard therapy for Parkinsonians, Oct '00 p6 L_Dopa, slowing Parkinson's progression, Feb '03 p12Levodopa + Entacapone + Carbidopa - Stalevo, Aug '03 p2-3Levodopa, induced dyskinesia, Jul '00 p7Levodopa, linked to heart disease, Feb '03 p9Library, CPWG, Jul '02 p3-4Lipitor, related to Parkinson's, Jul '02 p6 Maneb fungicide with Paraquat herbicide, Jun '03 p4-5Manganese and Parkinson's, Aug '03 p3-4Massage therapy, alternative medicine, Jan '01 p2Medical equipment donations, Oct '02 p7Medicare coverage, deep brain stimulation, Feb '03 p12Medication meeting video, Jun '03 p4Meditation/Tai Chai before CPWG meetings, Jun '03 p7 Meeting videos, Jun '03 p4Methylsulfonylmethane, Oct '01 p6Methylsulfonylmethane, personal experience, Dec '02 p3-4Mevacor, related to Parkinson's, Jul '02 p6Mirapex, related to sleep disturbances, Jul '02 p7Mission statement, CPWG, Jul '02 p2Movers and Shakers of New England, Jul '00 p2MSM see Methylsulfonylmethane Naturopathy, alternative medicine, Jan '01 p2NeoTherapeutics Inc., netrofin, Oct '02 p11Nerve Growth Factor, Aug '03 p7Netrofin, Oct '02 p11NETRP funding, Feb '03 p13Neuroimaging, Oct '00 p3Neuroimaging, clinical research trials, Jan '01 p1Neuroimaging, DaTSCAN, Oct '00 p8Neuron death, Jul '02 p5Neurotoxin Exposure Treatment Research Program, Feb '03 p13Newly diagnosed, personal experience, Jul '00 p4Newsletter subscriptions, Feb '03 p11NIH funding for Parkinson's research, Feb '03 p13Novartis, Stalevo, Aug '03 p2-3Nutrition, excess Iron, Aug '03 p4Nutrition, guest speaker, Feb '03 p11Nutrition, meeting video, Jun '03 p4Nutritional guidelines, Jun '03 p2-3 Occupational risk, solvent exposure, Mar '01 p6 Pallidotomy, Jul '00 p7Pallidotomy, personal experience, Feb '03 p4-6Paraquat herbicide with fungicide Maneb, Jun '03 p4-5Parkin gene mutations, Jul '00 p8Parkinson's 'personality' predisposition, Aug '03 p1Parkinson's Study Group, Oct '00 p1Patch, Rotigotine CDS, personal experience, Feb '03 p2PD see Parkinson's diseasePergolide, valvular heart disease, Dec '02 p10Perlman, violin article, Jul '01 p2Permax, related to sleep disturbances, Jul '02 p7Personality traits, Parkinsonians, Jan '02 p4-6Pesticide exposure, Jul '00 p7Pesticide exposure, Jun '03 p4-5Pesticide study, Jan '01 p9Pesticides, Mar '01 p7Phase I, II, III clinical trials, description, Jul '00 p1Phone tree, Feb '03 p10Piano playing with Parkinson's, Oct '00 p6Pig embryonic cell transplant, Jul '00 p6Placebo effect, Feb '03 p7Placebo effect, Oct '02 p5Pramipexole, inhibiting cell death, Jul '01 p8Pravachol, related to Parkinson's, Jul '02 p6PSG, Oct '00 p1 REM, sleep disturbances, Jul '02 p7Remacemide, Jul '00 p6Requip, related to sleep disturbances, Jul '02 p7Research funding, Feb '03 p13Research Vision award from Institute for Neurodegenerative Diseases, Jun '03 p2Research Walk, Institute for Neurodegenerative Diseases, Aug '03 p1-2Rotenone, pesticide, Jan '01 p9 Salivation, automatic body functions, Apr '02 p1-3Salivation, automatic body functions, Aug '03 p2Selegiline, death rate, Mar '01 p7Sex, Men vs Women with Parkinson's, Jan '01 p9-10Sexual activity, Apr '02 p1-3Shallow water exercise for Parkinson's, Aug '03 p5Sildenafil, effect on dyskinesia, Jul '00 p7Sinemet and eating, Jun '03 p2-3Sinemet, slowing Parkinson's progression, Feb '03 p12Sleep disturbances in Parkinson's, Jul '02 p7Smell, inability of Parkinsonians, Jul '01 p7SOD see superoxide dismutaseSolvent exposure, Mar '01 p6Solvent exposure, Oct '00 p9SPECT imaging, clinical research trials, Jan '01 p1SPECT immaging, Oct '00 p3Stalevo, FDA approval, Aug '03 p2-3Statins, related to Parkinson's, Jul '02 p6Stem cell research, Jan '01 p10Stem cell research, Jul '00 p6Stem cell research, Jul '01 p6Stem cell research, Oct '00 p3Stem cell research, Oct '02 p12Stem cell research funding, Feb '03 p13Stem cell research, religion, Oct '00 p8Stem cell transplantation, lack of benefit, Dec '02 p1-2Stress and Parkinson's, Aug '03 p4Subscription, newsletter, Feb '03 p11Subthalamic neucleus stimulation implants, Jul '00 p7Superoxide dismutase and Parkinson's, Aug '03 p3-4Support group, benefits, Jul '01 p3Swallowing, automatic body functions, Apr '02 p1-3Sweating, automatic body functions, Apr '02 p1-3Tai Chai/meditation before CPWG meetings, Jun '03 p7 Tax exemption, CPWG, Feb '03 p1TCH346, Jan '01 p11TCH346, Jul '00 p5TCH346, Mar '01 p6Telephone tree, Feb '03 p10 University of Kentucky, Jul '02 p4Urination, automatic body functions, Apr '02 p1-3 Valvular heart disease, Pergolide, Dec '02 p10Viagra, dyskinesia, Jul '00 p7Viagra, sexual function, Jul '00 p7Videos of CPWG meetings, Jun '03 p4 Vitaline, vitamins, Oct '02 p7Vitamins, Oct '02 p7Vitamins, folic acid, Jun '03 p3-4Vitamins, nutrition, Jun '03 p2-3 Walk, Research, Institute for Neurodegenerative Diseases, Aug '03 p1-2Water exercise for Parkinson's, Aug '03 p5 Yale Movement Disorders Center, Oct '00 p3Yoga, alternative medicine, Jan '01 p2Yoga, personal experience, Feb '03 p3 Your Dream Job Awaits ! ! Stan Wertheimer Here is a list of some jobs that as yet have no one to do them. If you are interested contact the appropriate person, or Jackie or me . Many functions of the group are being covered by the membership; thesepeople seem to enjoy what they are doing.
By participating you get a feeling of contributing to a great cause, meet up with some equally great folk, help advance the goals of CPWG and hence those of the greater PD community, and get a warm feeling fromothers who appreciate what you are doing. There is never any pressure from others - NEVER. If for somereason you have to slow down a bit, then do so, with the blessings and concern for your welfare by others in thegroup. It will be a positive experience if you choose to accept one of these terrific jobs.
Construct a website - this is not for everyone; if you have the expertise please consider it. Having a website is more than it appears on the surface. With a website we can send some people the newsletterelectronically thereby saving about a dollar per copy; similarly for the newsletter index. We can makeourselves known to others outside (and even inside) the state with possible positive fiscal ramifications (grants,donations, …). We can set up a place for people to leave messages for the group or a specific subgroup andhave online conversations. It would be a starting place for your searches of the internet since we would have allthe important links. This job has high priority.
Contact local health care facilities to suggest discussing pd - Jackie Dorwin and I have done this three times in recent months; it is a perfect use of our time and energy. The audiences have been enthusiastic;they tell us that they will be able to use what they have learned immediately in their work with PWP. Contacteither one of us for more information about how you can do this in your locale.
Deliver pd information to doctors’ offices - this has already been organized by Marge Krawcyznski. I am listing a reminder that she needs people to actually get the job done. It should not take much time; if severalof us do it, there will be a sizeable impact on newly diagnosed PWP in Connecticut. Contact Marge 860-793-8944 Organize a pd film festival - a long term project, but potentially lots of fun and a great way to spread information as well as a possible source of funding for the CPWG. The final result could go many ways; itcould be a short experience or one spread out over several days. The emphasis could be historical, clinical,social, or a mixture of several approaches.
Produce a report on pd-neurologists in ct/ri/ma/ny - any newly diagnosed person would find this invaluable. How many of us are still with the person who first diagnosed us? It would also be a source forthose who move, want another opinion, or are not happy with her/his MD.
Produce a comprehensive report on research on pd in ct - would involve speaking with those groups doing research in the state, such as IND, Dr. Murphy in Danbury and Dr. DeMarcaida in Hartford. One couldalso contact the pharmaceutical companies in the state.
Survey the membership about interest in nutritional supplement buying club Survey the membership for interest in buying drugs from canadaSurvey the membership about carpooling to meetingsInvestigate the plausibility of a cpwg crafts fair and crafts catalog - many of the members are talented in craft work or one of the arts. A craft fair would be a great way of sharing the wealth and also anexcellent fundraiser. A catalog could be disributed to those who might support our efforts thereby providing anoutlet for the craft/art person, funding for CPWG, and a source of pleasure for those using the catalog. Contactme (860.572.9965), or Jim B. (860-274-8844).
Connecticut Parkinson's Working Group132 Highwoods DriveGuilford CT 06437 DISCLAIMER: Articles in this newsletter are for information only.
Any questions of treatment should be discussed with your physician.
WRITE! your representatives in congress.


The nightmare headache- a look at migrain

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