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hi all At 22:35 1999/07/16 -0500, nina wrote: >Thought I would share the following message that will appear in the >Parkinson Foundation of Harris County's August newsletter. Following >that is a short talk I gave at our monthly meeting today to vent my >frustration. > >My husband, Joe, and I returned from a tiring, but I hope successful >trip to Washington, D.C. where we attended the 1999 Public Policy Forum >presented by the Parkinson's Action Network (PAN). From Invisible No >More, the focus changed to Raising Our Voices for a Cure. We practiced >advocacy skills, heard political and research presentations and knocked >on doors. > >In 1997, after four years of advocacy efforts, the Morris K. Udall >Parkinson's Research Act was signed into law authorizing the National >Institutes of Health (NIH) to fund up to $100 million in “research >focused on Parkinson's disease.” As of this date, the Act has not been >funded and much of the research has not been “focused.” > >In an attempt to rectify this, we personally met with Senators >Hutchinson and Gramm's offices. In addition to various Congressmen and >women, we visited with the chief of staff to the Chair of the >Appropriations Committee in the House and the domestic policy advisor >for Vice-President Gore. > >We heard from scientists all over the country on the latest research. >The experts continue to tell us they could find a cure if they had the >necessary funds. As in the past, we left feeling optimistic although >with somewhat heavy hearts, full of frustration with the knowledge that >if we had a hurricane or other natural disaster, our government would >find the money to offer relief. Why isn’t it considered a disaster that >every nine minutes another person is diagnosed with this devastating, >debilitating disease?! With the estimated costs of Medicare, >disability, lost wages, etc. to our country, there is not a more >compassionate, more compelling, more economical way to spend our tax >dollars. > >That’s why it is so important to raise your voice for a cure! Please >call me if you would like more information to help convey your message >when you write, call and visit your representatives. > Nina Brown (713-218-8888) > >************* >If you don’t know me, my name is Nina Brown. I write the newsletter and >am a positive, upbeat person. I spoke with someone yesterday who had >been diagnosed within the last 3 years. He told me he could handle >having Parkinson’s and didn’t want to think about the future. The good >news is that Parkinson’s usually progresses slowly. The bad news is >that, by definition, it’s a progressive, debilitating disease. > >I don’t want to frighten those of you who are recently diagnosed. I was >diagnosed 12 years ago. I could handle it then and I can handle it now, >but it’s more difficult now and I know it will be more difficult later. > >For many years, Morris K Udall was a prisoner within his own body…no >different than people with polio who lived their lives in iron lungs. >They could handle it because they had to. The public was more >frightened of polio because it usually affected the young rather than >the elderly. When we were in Washington we met a beautiful young girl, >engaged to be married, who had been diagnosed with Parkinson’s disease >at 24 years old and she was already wearing a deep brain stimulator. >Research was allowing her to function. Watching the ravages of polio, >the public demanded a cure. Now, iron lungs are a thing of the past. >Parkinson’s is the most curable of the neurological diseases. >Scientists tell us with enough funding; Parkinson’s can also be a thing >of the past. > >But it won’t happen if you don’t want to think about it and don’t help >make it happen. To those of you who can function almost normally now, >this is the time to put forth an effort to help find a cure. To those >of you whose days are more difficult, you can still make a phone call to >your representatives in Congress, take a Pennies for Parkinson’s can to >your doctor or drug store or convince someone who cares about you to >help in the search to find a cure for you or your grandchildren. > >*************** imho an excellent article bravo! >WHY IS IT SO HARD TO MOTIVATE PEOPLE TO HELP THEMSELVES? imho fear. denial. fear. janet janet paterson 52 now / 41 dx / 37 onset snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada website: a new voice <http://www.geocities.com/SoHo/Village/6263/> e-mail: <[log in to unmask]>