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hi all f.y.i. below is a plain text replica in HTML (size = 20kb) of the latest newsletter from YOPA (the original is in PDF format size = 2,500kb) at http://youngparkinsons.com/june2003-5.pdf janet ------------------------------------------------- What’s New at YOPA? Issue 2 June 19, 2003 Young Parkinson’s Monthly Inside this issue: - Member Profile - Coping & Personality Change - FDOPA PET As An Aid To Diagnosis - PD...Going To The Dogs - Parkinson’s Prayer of Promise - Clinical Trials: Are They Right For You? - Book Review 9 - Parkinson’s Events First we wish to congratulate and thank Kathy Webster and Ron Moore for their work on getting out a quality newsletter for YOPA on a monthly basis, the volunteer hours they put forth does great credit to the Parkinson’s community. Over the next few weeks YOPA will be an-nouncing two new members to our Board of Both these individuals will bring great energy to our organization and aid in getting YOPA to the next level in the world of non-profit organizations. We are also currently looking to revamp and restart our state representative program. If you are interested in becoming a YOPA rep for your state please email us at direc-tors@ yopa.org. State reps are highly moti-vated individuals who are willing to start young onset support groups, plan and exe-cute statewide YOPA fundraisers & aware-ness events, speak at public forums, write for local media, and be interviewed by news af-filiates in regards to young onset Parkinson's disease. YOPA has begun work on the 2nd Annual Parkinson’s Disease Symposium and Young Onset Awareness Walk. These events will be held in Albuquerque, New Mexico (YOPA from October 10-12, 2003. We have reserved rooms and conference room space (includes breakfast & lunch) at the Holiday Inn Mountain View Hotel. To reserve one of the rooms (rooms at this rate are limited) please call the Hotel reservations department at 505-884-2511. To receive the contract rates, please identify the group as Young Onset Parkinson's Association. All reservations should be made by 09/18/03 12:00:00 AM. The room rate is $78, which at first may seem a bit high but the Albuquer-que International Balloon Fiesta will be here at the same time (rooms typically run $140 and up during this event). More information on the Balloon Fiesta, which attracts over 700 hot air balloons, may be found online at ( http://www.aibf.org/). We have plans to raffle off a hot air balloon ride to one lucky participant! We will be posting conference information, speaker line up, walk information, dinner plans, and other related events on (www.yopa.org/conference2003.htm) over the next few weeks. You will also be able to register and pay your conference fee online as well as raise funds to help promote awareness in our online walk sponsorship area. During this event we will be filming a Public Service Announcement Commercial (PSA) which we hope you will donate your face and voice to. It is our hopes to get this PSA shown nationally. Please support us by making plans to join us here in Albuquerque and make this the biggest collection of young onset ever seen. The Young Onset Parkinson’s Association gave a top notch conference and walk last year and we plan on doing even better this year! Thank you for your support and friendship, Young Onset Parkinson’s Association Board of Directors Whats New At YOPA Cont. An Overview Painting by Ron Moore 35 Year Old Young Onset "Maybe I just need a vacation," I thought, "No!, I just need to slow down a bit What other reason is there for my constant fatigue?" These were the thoughts I was having throughout the year prior to when Parkinson’s reared its ugly head. I was 31 years old, was an Autism Specialist, a wife, and the very involved mother of a very active child. I did not have time for this. I had no idea that my life was to be turned inside out and backwards. It is one of those moments that will remain with me the rest of my life. I can smell the antiseptic smells of the doctor’s office, see the despair on his face, and remember the tone of his voice as he re-entered the examination room and said those life altering words -"I believe you have young onset Parkinson’s Disease. "Little did I know at that time, that within a few short years, that monster would be renamed as Multiple System Atrophy. It began to rain... Living in a small rural town in Tennessee, with YOPD, is like being dropped into some tribal village in the Amazon with no interpreter. I saw the way people looked at me, tried to be nice, but slowly the well wishes dwindled, the calls for outings grew silent. I became reclu-sive. I saw that this monster attacks not only you, but those around you. My marriage fell apart, my daughter grew angry. I was forced to retire from my job. Now I know how Noah felt! In June, 2002, I received one of those forever moments again. The monster had changed its name to Multiple System Atrophy, and this time it was going to kill me. The depression and despair that hit was beyond words. I continued to withdraw from everyone and everything. I remember talking to the monster, telling it to be over with, take me soon. I did not want to live. I was DYING!! In July, I received an e-mail from Michael J. Church, a single father with YOPD, from Flor-ida. He had seen my postings on several PD websites, and wanted to start an online support group, and asked if I would help him with it. It took me a month to respond, but I finally decided that I would help him. Our group grew quickly. We connected with people from all over the country. People like me, all going through the same things I was going through. The only thing missing was meeting all these people face to face. I had never met anyone else with YOPD. Michael and I met in November, along with two other friends from our group, and decided we wanted as many of our “groupies” to have a get-together. This small gathering turned into what is now the Atlanta Conference. On a warm January evening, we decided that the conference wasn’t enough, there needed to be something more...it was the that the Movers &7 Shakers Young Onset National Support Group was born! As with any small child, the Movers and Shakers has fallen down, learned a few life lessons, but got back up and continues to work towards empowerment, support and education for the young onset community and others involved. Finding a cure is a MUST! Lobbying for changes in legislation is greatly needed. However, how can I ask anyone to think that far into the future when the world is crumbling around them now? Today, I live in Florida. The climb back took courage, support from friends in the YOPD community, and a renewed faith in God. I would be telling a lie if I did not say that some mornings the monster wins. Most of the time, however, I win. Am I still waiting around for that 7-10 year life expectancy...NO WAY!!!! I have too many things to do. As the song says…”Bring on the rain, cause I’m thirsty any way!" Besides, I found my umbrella... Member Profile: Gretchen Garie ------------------------------------------------- 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