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FDOPA PET SCANS AS AN AID FOR PARKINSON'S DIAGNOSIS By Tom Berdine Most of us think of service dogs being utilized by the blind. The "seeing eye dog" conjures up the picture of a blind person walking down the side- walk of a busy city clutching the harness in one hand, and his red-tipped white cane in the other, pedes-trians parting like the Red Sea. Things have changed dramatically in the business of service dogs over the last twenty years. People with varied disabilities are finding that a dog can be their best friend. Now, for the first time in the seventy-five year history of training dogs to assist disabled people, dogs are being trained to help Parkinson’s disease patients. A joint study conducted in 1997 by Independence Dogs, Inc., the University of Pennsylvania’s Park-inson’s Disease and Movement Disorders Center and SmithKline Beecham Pharmaceuticals, set out to see if dogs could make a difference in a person with Parkinson’s (PWP) quality of life. The main target of interest was the common Parkinsonian complaint of "freezing". Dogs were trained to become the patient’s legs. When the patient freezes, the dog taps the top of the patients foot. If the patient falls, the dog helps him up. The dogs also serve in other ways. They are trained to turn on light switches, open doors, pick up dropped items, and pull wheelchairs. It costs $12,000 to train a service dog. The patient pays only $200, which covers the cost of the har-ness. For additional information on this subject, check out the links below: PD...Going To The Dogs By Greg Sterling Parkinson’s Prayer of Promise by Amy Marie Goodwin Life used to be so easy...aah what we used to take for granted! How could we ever know all the struggles we would be handed? Simple efforts...threading needles, walking, tying our shoelaces Unsteady balance, muscle spasms, tremors, staring of our own faces? With each rise and fall, medications and never-ending fears, We learn to conquer each burden with determination and tears! This prayer is for all the heroes who have tried their best to see That God has his reasons, we unselfishly don’t ask "why ME? A prayer for a soon-found cure is what our hearts strive to find; Until then we live each day fully, no matter how hopeless or kind So here are some words of accomplishment my dear Parkinson friend, NEVER give up, always be strong, let your faith guide you ‘til the end! A positive attitude, humor, and smile are an absolute must, Through each and every difficult journey we must trust That there will be a day in our lifetime and we’ll trust That there WILL come a joyous day in our own lifetime and we’ll see A magical moment for all, a miracle! Cure! For all the heroes you and me! The term "clinical trials" conjures up different images for each of us. For me, as for many others that have participated in a clinical trial, the experience was quite an exciting one. Due to FDA requirements, before a drug or surgical procedure is “FDA approved”, it must go through 4 phases. The following website is a great one for giving you an overview of what exactly the FDA requires: (www.clinicaltrials.gov/ct/whatis#/whatis) Some of these trials will pay you for your participation, but some will not, so check before you decide. It is interesting to keep track of the clinical trials that are being done, as it helps you to stay abreast of what’s going on in the research world. Knowledge is power! For a state by state overview of clinical trials: (www.centerwatch.com/patientstudies/cat#117.html) The National Parkinson Foundation is another great site to get an overview of studies: (www.parkinson.org/) Before signing up, be sure to check with your doctor, as many trials have very strict require-ments, or they may require you to be off certain medications. Look at the trials, talk with your doctor, then decide if you wish to participate. Clinical Trials: Are They Right For You? From the Parkinson Library: Book Review by Kathy Webster When Parkinson’s Strikes Early: Voices, Choices, Resources, and Treatments" Barbara Blake-Krebs, M.A. And Linda Herman, M.L.S., Hunter House Inc. Publishers This is an inspiring book, especially for the newly diagnosed. It is a compilation of stories of many young onset Parkinson’s disease (YOPD) patients. This is a book that begins with on overview of what precisely Parkinson’s Disease is for those who may not quite understand the disease. The format of this book is what I like best. The table of contents allows you to “jump around” to a specific topic of concern for you, although reading it straight through, gives you and understanding of how the progression of this disease affects the patient. This book allows you to relate to real people who are facing the same challenges that you may be facing, or have already conquered. There are poems, as well as cartoons, throughout the book, which adds to its readability. This book is a must-have for all YOPD patients! Please visit (www.youngparkinsons.com/amazon.htm) to purchase this book and others. Between 5-15% of your purchases will be donated to the Young Onset Parkinson’s Association. National Parkinson’s Foundation 1st Annual Young Onset Parkinson’s Conference June 27-29, 2003: You are cordially invited to join the NPF in Atlanta, Georgia for this unique and informative conference held at the Perimeter Center Marriott. This weekend will be filled with educa-tional and interactive workshops, as well fun to be enjoyed by PWP, children, spouses, fam-ily members, and caregivers. Below you will find the conference itinerary. The registration fee is $100 per adult, $50 per child under 18. This fee includes 2 nights (Friday and Saturday) at the Marriott, meals (breakfast, lunch, dinner on Saturday and breakfast on Sunday), en-tertainment, workshops, and conference materials. Friday: Registration PD Artisans Showcase Appetizers Cocktail Bar Saturday: Welcome Speech" (various speakers)Coping with Diagnosis & Living with PD—Dr. Laura Marsh Caregivers Concern Panel—Dr. Gladys Gonzalez Ramos Neuromuscular Massage Therapy—-Anna Svircev A Chat With the Neurologist—Dr. Jill Marjama-Lyons, Tom Berdine Alternative Therapy Panel—Dr J. Juncos, DR. C. Epstein We know that all who attend will benefit greatly from nor only the speakers and facilitators, but from each other as we all make new friends. Please join us. If you have any questions about the conference. Please contact Pam Milton, conference coor-dinator at [log in to unmask] or 770-503--0442. If you would like to register for the conference, please contact Claudia Vera, National Parkinson Foundation, at 1-800-327-4545. Parkinson’s Events If you do not have access to a computer, but would like to receive a copy of future issues, please complete the form below and mail to the above address. The cost is $12 a year. Make payment to: Young Onset Parkinson’s Association, PO Box 50936, Albuquerque, NM 87181 The Young Onset Parkinson’s Association (YOPA) is a non-profit corporation with headquarters in Albuquerque, New Mexico. YOPA understands the diverse issues that affect the young onset Parkinson’s patient because we are patients ourselves. If you need any help with any PD issue, please contact us. Family Relationships Stress Management Financial & Career Issues YOPA strives to raise public awareness on the complexities, struggles, and triumphs of the young onset patient and their families, utilizing any and all media forums. We work hand-in-hand with all PD groups to raise critical funds for Parkinson’s research. YOPA’s current awareness campaigns include a ten minute advocacy film and an upcoming documentary. We have also begun a global Young Onset Registry which will be utilized in future projects. Our State Representatives program provides YOPA with a national reach. Our mission is simple: Provide support, raise awareness, and promote fundraising efforts. Hard Facts about Parkinson’s: - Over 1 million Americans have Parkinson’s disease, and that number is growing! - 60,000 new cases annually. - Young onset cases are increasing, with tens of thousands under age 40! - PD costs the U.S. taxpayer over $25 billion annually in healthcare, social secu-rity, and lost wages. Yes, please mail the newsletter to my home! Enclosed you will find a check or money order made out to the Young Onset Parkinson’s Association in the amount of $12 for a one year subscription. Name: __________________________________________________ Address: __________________________________________________ City: _______________________ State__________ Zip _______ Board of Directors President: Tom Berdine Vice: James McCumber Secretary: Marcie Gru-enwald Treasurer: Gaylund Bowling Volunteer Staff: Editor: Kathy Webster Campaign Manager: Ron Moore YOPA www.yopa.org Young Onset Parkinson’s Association PO Box 50936 Albuquerque, NM 87181 1-505-275-YOPA THE YOUNG ONSET PARKINSON’S ASSOCIATION IS A 501C(3) CORPORATION AS DESCRIBED IN SECTION 501(A)(1) OF THE IRS CODE. ------------------------------------------------- janet paterson: an akinetic rigid subtype, albeit primarily perky, parky pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask] my newsletter: http://groups.yahoo.com/group/newvoicenews/ my website: http://www.geocities.com/janet313/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn