Dear Nina,
What a beautiful letter! You and I are so alike; we were diagnosed at the same age and are experiencing the same difficulties in coping with our grandchildren and our lives. I hope you're successful in getting Oprah's attention.
Yesterday I took my 2 year old grandson to Open House at his pre-pre-school, and afterwards we stopped at a nearby lake to play with the ducks. He ran too close to the water, and I ran after him but had trouble keeping up. Already he can outrun me! We both slipped on some rocks and I fell on top of him, pushing his face into the rock. Neither of us was seriously hurt, but we were both pretty shaken up, and of course I felt terrible. I began to feel I might not be competent to take care of the children by myself.
On a happier note, isn't that great news about the Senate voting our bill out of committee? I visited with my Congressional rep Thursday, who said, "Don't worry about this bill. In an election year, no one is going to vote against Parkinson's disease." I sure hope he's right.
I e-mailed our friend Dick Gephardt, requesting an appointment while he was home for the recess. I immediately got a computerized reply (he was in Pennsylvania at the time, running for president) which said, in effect, that if I wasn't one of his constituents (I'm not) I shouldn't bother trying to speak to him. I'm sure fundraisers are exempt from that, so if Joe wants to remind him of our cause, I'd be grateful.
Wouldn't it be great if the next time we saw each other we were "normal" again? I guess it won't happen that quickly, but we can dream can't we?
Regards,
Pat
On Fri, 4 Sep 1998 12:07:51 Nina P. Brown 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 mos=
>t
>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 tha=
>t
>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 million=
>s
>of others will join my co-workers in total disability.
>
>Until recently, my medications (which cost $500 a month) have allowed m=
>e
>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 an=
>d
>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 financiall=
>y
>crippling our nation. According to a study done at Duke University, th=
>e
>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. Th=
>e
>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 benefit=
>s
>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
>
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