 |
 |
Many thanks for following in Stan Houston's footsteps in this ordeal - grandiose letter to Oprah except for last line - a little mushy. You have my deepest affection in tending to this drive to eliminate Parkinson. Regards. Fleurette At 12:07 PM 9/4/98 -0500, you wrote: >Helen Mason suggested that I post a copy of the following letter I sent >to Oprah. It was also her suggestion that I send a copy of the PSA >tapes. The letter includes a new BIO for me as well. > > >Dear Oprah, > >In looking at your topics, my suggestion is for a show on the issues >involved concerning people with Parkinson's Disease would encompass most >of them: Healing Yourself, Making Dreams Come True, the Enormous Debt >caused by PD, a cure would certainly Bring me Happiness, a cure would >Change Life by the Yr. 2000, and I would like the Financial Freedom >from medical expenses and the fear of nursing home costs, and so forth! > >A program about people with Parkinson's Disease would provide a dynamic >show. It has: > 1. Strong visuals. > 2. Stories of heroic struggles. > 3. People taking charge of their own lives despite hardships. > 4. A tremendous economic toll both personal and to the taxpayers. > 5. A community that is reputed to be the most informed about their >disease. > 6. Hope for the future because a cure is in sight with sufficient >funding. > >My story is only one of millions. When I was 44 years old I was >diagnosed with Parkinson's disease and my family has watched as the >disease has progressed over the past 12 years. Parkinson's is a >progressive neurological disorder that destroys the brain cells >controlling motor function. The available treatment only partially >alleviates the resulting stiffness, tremor and slowness of movement that >can eventually leave its victims unable to walk, to talk, even to move. >For the past 12 years I've been Vice-President of the Parkinson >Foundation of Harris County. Among other things, I write a monthly >newsletter that is distributed to over 1700 families. I've chaired >several fund-raisers--the last being the "Knock-out Parkinson's with >Mohammed Ali" Gala which netted over $125,000 and is being used for >research and community outreach. I am enclosing a video tape that was >one of the results from this endeavor, with a letter that was posted on >a Parkinson Internet site. > >I want to be able to continue to contribute to my community, but I've >seen my co-workers robbed of their ability to work because of the >progression of their disease. I know that without a cure I and millions >of others will join my co-workers in total disability. > >Until recently, my medications (which cost $500 a month) have allowed me >to live an "almost" normal life. But now the disease has progressed to >the point where the medications don't always work. Today I can feed and >dress myself, but the time to find a cure is running out for me. A day >doesn't pass that allows me to forget that I have Parkinson's disease >and that I don't know what tomorrow will bring. I spent a year >recovering from a ten-hour back fusion caused in part by my Parkinson's >gait. Then due to the Parkinson's, I fell and fractured a kneecap. > >My grandson just celebrated his 5th birthday while I watched the party >from the sidelines, because it was an "off" day. The medications didn't >work and I couldn't move. There are times I can't hold my two year old >granddaughter for fear I might fall with her or drop her. I want to be >able to play with my grandchildren. I don't want them to remember that >their Grandma couldn't move, or talk or smile. > >In addition to the human suffering it causes, Parkinson's is financially >crippling our nation. According to a study done at Duke University, the >US economy loses about 25 billion dollars a year (that is more than >$68,000,000.00 a day) to maintain about one million Americans who have >Parkinson's disease. The majority of the expense comes in the later >years of the disease. Our U.S. Government pays out a substantial part >of that from our taxes--a conservative estimate might be 20% of it, or >five billion dollars a year ($13,600,000.00 a day). > >Parkinson's stands to affect millions more than the 1-2 million people >in the United States today when the Baby Boomers, now age 51, reach 57, >the average age of diagnosis. This aging Baby Boomer generation will >greatly increase that toll, putting additional stress on the Medicaid, >Medicare and Social Security Disability systems. And 60,000 new cases >are diagnosed each year=85one every nine minutes. The public needs to >know. > >Four long years ago, Parkinsonians and their caregivers launched a >valiant grass roots effort to pass the Morris K. Udall Bill for >Parkinson's Research and Education. In November 1997, the Bill was >finally enacted as an amendment to a larger appropriations measure. The >Parkinson's community rejoiced, thinking that at long last the $100 >million approved for research would soon be granted, but we are still >struggling with Congress to appropriate the funding so that the benefits >of that research can become a reality. > >This past June I joined with others affected by Parkinson's in >Washington, DC to participate in the Parkinson's Action Network's fifth >annual Public Policy Forum. We "Parkinson's Activists" heard about the >latest research and learned how to approach Members of Congress. Until >recently, we have been invisible. We are not paid lobbyists, but we >cared enough to make our voices heard. We suffer with this disease >daily. So many of us have bravely labored to see the Morris K. Udall >Parkinson's Research bill passed, because scientists have told us that >with enough funding they anticipate finding a cure within 3 to 5 years! > >This battle could be quite a story and could also be part of a larger >story on how the National Institute of Health is not stepping up to the >neurological diseases associated with advancing age which will become >the scourge of the Baby Boomers. There is a window of opportunity now >that will not be there as Parkinson's and the other neurodegenerative >diseases become more prevalent. > >I can only imagine the number of decisions you must make regarding the >selection for a show, but my life as well as the lives of millions who >may have already lost the ability to write or speak out in their own >behalf could be helped by the exposure a show on PD could provide. >YOU hold my life and the lives of millions like me, in your hands. YOU >have the power to help find a cure for Parkinson's by increasing public >awareness and helping us put pressure on Congress to fund the Udall >bill. > >PLEASE, Oprah, help us get our lives back! >Thank you. > >Sincerely, > >Nina Proler Brown > >-- >Nina P. Brown >Phone: 713.729.1544 >Fax: 713.610.8662 >