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Peggy thank you for the reply and I have been doing what I can with my life being so hectic right now. If it was up to me I would quit my job and raise awareness full time. I have TEAM YOUNGPARKINSONS.com in place and have managed a few members on short notice and am doing the email fundraising. We wont come close to the $40,000k we managed last year but that is fine. There is a slight chance that I will make it. Walmart may be sponsoring Mark Comes and myself (cross your fingers). I don't need to lose any weight, cant afford to! I have to fight to keep my weight at 130. Lately at night though I have noticed increased dyskensia in my left leg. Drives me nuts! Guess the 5 years of SINEMET and current intake of 1500mg+ a day is catching up on me. So far I am able to still work full time at the Dept of Energy facility here in Albuquerque as an IT Technician. Each day I get up and think "will this be the last day". Then I stumble out of bed, down a SINEMET 25/100 and a CR 50/200 with a COMTAN and an AMANTADINE chaser, wait about an hour, climb into my truck, barely able to turn the steering wheel and hoping the guards at the gates on base wont stop me. They did once and said I looked shaky. My days are long but I love the job. The federal agents I work for treat me no different and they are patient when I can not speak. I hope to be there for a long time. Since I left the Young Onset Parkinson's Association (YOPA), which was a hard thing for me to do, I have had time to recharge my batteries and think about our plight. And I always come to the same conclusion: The world still perceives Michael J Fox as the sole young onset! We must change this. Two years ago I co-produced a PSA for YOPA (it can be viewed at www.youngparkinsons.com/psa.htm It came out very good and got some airplay on TV stations across the nation. Unfortunately we did not have the expertise to get it out to a mass market. Today I am working on a film with my filmmaker friend Tim Costello. It has been in my head for 3 years and I have to get it out (not much room in there). We are in need of funding. I emailed the various PD organizations but received no reply. Which surprised me as I have done quite a bit for them. I will be sending them packets in the mail with samples of Tims's past work and an overview of the project. Maybe that will interest them. The film will not be for profit and will be shown at the Santa Fe Film Festival. I plan on offering it free as an awareness and understanding's piece to the community, doctors, anyone. We anticipate a low dollar figure of $10,000 and my good friend and your Patti Lightners family has got us going with a gift of $1,000. Thank you Patti. I am thinking of posting a website about the project and adding a donation page in hopes that the PD Community will come together and make this a reality. SEE BELOW: "OFF" Young Onset Parkinson's Disease We plan on entering it into this years Santa Fe Film Festival and after that we will be sending it to cable access nationwide, PBS, and the national affiliates, neurologists, PDF, NPF, APDA, FOX, etc. The film will be a combination of Parkinson's through my eyes and through the eyes of others I come in touch with. I want to touch on on the basics (tremor, rigidity, bradykeneis, masked face, slurred speech, etc) but also want to bring out the things like sex and gambling addictions. I can have Dr Jill Marajama-Lyons do a brief explanation of the disease at the start, or during the film as symptoms occur. We want to show the good, the bad, and the humorous side of Parkinson's and let both current and future Parkinsonians know that life exists after diagnosis. We will film me in bed with my feet going nuts, sleeping, night walking, showering, grooming, dressing, cooking, eating, driving, etc etc.. The film will also have photos of the thousands of young onset worldwide. And hopefully an appearance by my mentor, hero, and best friend Russ "Lightning" Ahlstrom who has furthered the work of the great Sydney Dorros. "Accommodation without Surrender" is their battle cry! We will show the challenges we face daily and how to "Accommodation Without Surrender". As Russ Ahlstrom and Sydney Dorros would say. We are putting packets together for potential sponsors. The packets will contain some of Tims short films, the YPOA Commercial, and an overview of the project. So far Patti Lightner has given us $1,000 to start, but we will need about $10,000 for the project. Tom Berdine Founder; YoungParkinsons.com CoFounder, Young Onset Parkinson's Association President, YOPA, 2002-2004 Diagnosed with Young Onset Parkinson's Disease in 2001 "I don't suffer from Parkinson's.I thrive on it." -Tom Berdine -----Original Message----- From: Peggy Willocks [mailto:[log in to unmask]] Sent: Thursday, March 17, 2005 3:49 AM Subject: Re: Please support the cause... Tom I understand your need to take a rest from participation in the Unity Walk. After your 3 years of hard work and raising so much awareness and money, you deserve a break! But the beauty of the Unity Walk is its simplicity in how to participate. If you an type a few names from your email and push "Send." you can raise funding for research - and right from your home! What I love about the Parkinsosn Unity Walk is that it divides its money up evenly between major PD organizations and goes SPECIFICALLY to research. I hope you stay as an active participant (I'm sure you will). If others reading want to know more, visit www.unitywalk.org (you can search for a particular walker once at the site and donate your funds that way - I'm there!) Best to you Tom! And by the way, I lost 20 lbs earlier to dyskinesias, but boy, did I ever need to! LOL Peggy Willocks -------------- Original message -------------- > This is my last year doing this so lets make it count! > > Parkinson's, > > Each year thousands of patients, their families and friends gather in > New York's Central Park for a two-mile walk to raise awareness of > Parkinson's disease and funds for research. I am supporting the > Parkinson's Unity Walk and hope you will join me by walking with me > and my team. Help us raise funds towards my team's goal. When you > click on the link provided you will be forwarded to my Personal > Donation Page. Please, take action with me to find a cure for Parkinson's disease. > > > > Recently I was approached about leading a team for the 3rd year, or is > it the 4th year, for the 2005 Unity Walk in New York. Having proudly > managed a great group of friends over the past few years as the team > captain for Team Yopa (and coordinating the teams raising of over > $100,000), I understand the hard work all of you put into this effort in the past. > > > > Unfortunately I have not been doing so well as of late. The last 6 > months have brought many changes into my life. First and foremost I > reluctantly resigned as the President of YOPA (but will always remain one of the orignal founders). > Healthwise it has been a rough year. I am at the 5 year mark and have > been on SINEMET since day one (take an excess of 1300mg a day, SINEMET > 25/100 and 50/200 CR 4x daily, with COMTAN and AMANTADINE. > > > > My speech as many of you are aware has degraded rapidly. Although > still strong most of the day it is reduced to a stuttering, low, > mumble for an hour in the afternoon and for the whole night (6 to 10pm). > > > > Weight loss is taking its toll as well. Having lost 20pds in the last > year it is now mostly loss of muscle weight. > > > > I still work full time as an IT Specialist for the Department of > Energy, it is a struggle but I will not let PD beat me. And as many of > you are aware I medically retired at 80% disabilty from the US Air > Force in 2002 after 16 year of honorable duty in the Intelligence career field. > > > > Enough about my sob story, time to get down to business. > > > > I have set a lofty goal of 100k and 100 walkers. We can do this > together, I know many of you and many of you know me. I have been > there for many of you over the years and plan on being here for you for years to come. > > > > Know I need you. I need you to join this team of friends and family. > Bring your spouse, parents, children, friends, and your dogs! > > > > Join us in raising crucial money for pD research but more importantly > help us raise awareness. > > > > Keep a close eye on the old www.youngparkinsons.com website as fellow > PWP Jim McCumber brings it back to life. We offer the best daily, non > biased PD related news items and plan on bringing you a lot of new > interactive functions over the next few months. We want to make this > your site, you have a voice in it. If you would like to help please > email us at [log in to unmask] or [log in to unmask] > > > > This is not an attempt to compete with any other organization or team, > it is an effort to get friends back together and to have a great time > in New York as we have done in the past. > > > > We will be coordinating a team dinner, giving free team tshirts and > other free PD awareness items. We will also be providing discounted > hotel and aifare. We hope to get the majority of the team in the same hotel. > > > > So, if you have walked with us in the past you know what a great time > we have there. If you havent visit the message board at > www.youngparkinsons.com and look at the photos from past walks. > > > > And I can guarantee that our own celebrity, a 41 year veteran of > Parkinson's, Mr Russ Ahlstrom, will be there once again to lead our > efforts! For more info on Russ email me to purchase his book: It's All > In Your Head, Dealing & Living With Parkinson's. > > > > On a final note I would like to announce a new project I am working > on, a documentary entitled "A Day In The Life Of A Young Onset > Parkinsons Disease Patient", or "Parkinson's: Not Just For Grandma Anymore.". > > > > This film will show the daily struggles, leaving nothing out. From > restless sleep, to getting up 5 times a night, showering, grooming, > dressing, driving, trying to maintain a job, and much more. More > importantly it will show the good side of PD as well (yes pD has a > good side). THat is the people, the friends, the closeness of our > community. It will also show that parkinson's can be tolerated and > accepted, it does not have to be a life ender. We dont have to "wait > for a cure", we can live life and have fun (although maybe a bit more > shaky or rigid then before). It will be shown at the Santa Fe Film > Festival in > 2005 and hopefully be broadcast on PBS or public television across the nation. > More on the film in the coming months. > > > > As you can see I am a bit pumped up. I am rested and ready to roll, > are you ready to roll with me? Lets do it! > > > > TOGETHER WE CAN WIN! > > > > Each year thousands of People Living with Parkinson's Disease(PLWP's), > their families and friends gather in New York's Central Park for a > gentle two-mile walk to raise awareness of Parkinson's disease and funds for research. > > > > Please, support the Parkinson's Unity Walk by making a donation that > will go directly to research to find the cause and cure of Parkinson's disease. > > Login to visit my personal web page and help me in my efforts to > support Parkinson's Unity Walk > > ********************************************************************** > ******** Some email systems do not support the use of links and > therefore this link may not appear to work. If so, copy and paste the > following into your browser: > http://puw.kintera.org/faf/r.asp?t=4 <http://puw.kintera.org/faf/r.asp?t=4&i=64467&u=64467-65981153&e=251683> &i=64467&u=64467-65981153&e=251683 > 769 > ********************************************************************** > ******** > > Thomas Berdine > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn