Dear Mr. Stossel:
Thank you sincerely for exposing the outrageous disparities in funding
research, and the politically correct way in which the process operates.
It's been a long time coming.
Is there any possibility of a follow up? Perhaps one in which the members
of the subcommitte are asked why they weren't at the hearing on 9/28. It was
outrageous that only Chairman Spector and Senator Cochran were present.
I have included my personal assessment of the system's betrayal in a
piece I wrote about my family's long history with PD, which I had
attached to an e-mail I sent various members of Congress. I urge you to
please read it.
Much appreciation,
Charlotte Mancuso
(650-329-0967)
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THREE GENERATIONS OF PARKINSON'S DISEASE:
A CRISIS OF FAITH
Every generation of my mother's family for as far back as
I've known, has suffered the devastation of Parkinson's
Disease (PD): My Grandfather Barone; his children, my
mother, Anna, Uncle Laurie, Aunt Nellie, and now me,
Charlotte, his granddaughter. We have all suffered from
PD, a devastating neurological disorder that destroys brain
cells controlling the body’s motor function, and many
involuntary functions of the body.
When my mother was diagnosed with PD, she was 43, my
brother was 7 and I was 3. By the time I was in grade
school, she required 24-hour care from us, which we alone
provided. My Dad carried the largest burden, especially at
first, but all 3 of us pitched in, stuck together, and carried the
load for 24 years. For example, when I wanted to start
kindergarten and go to school like my brother John, I was
told it was necessary for me to stay home in case my mother
needed help, since Dad was working and my brother was at
school. Later, my father worked at night when John and I
were in school. We endured on very little sleep for 24 years.
I'll spare you the details of the bloody falls, trips to the
emergency room, and the pain she endured before she
finally died of PD.
We stuck together, but in the early times, serious
consideration was given to splitting up the family: I would go
to my God Parents---Aunt Peggy, my mother's sister who
later in life died of Alzheimer's, and Uncle Tony, who
happened to be my father's brother (they had no children of
their own); my brother would go to his God Parents---my
father's sister Mary and her husband Frank (they had only
one child and could have no more). You can imagine the
anxiety we felt at the prospect of not only being removed
from daily life with our parents, but from each other as well; I
wondered when and if this would occur. For all the pain and
suffering we endured, and it is a test of endurance to care
for someone with advanced PD, I am forever grateful to my
Dad for keeping us together. I found out later that my father
had said to the family: Look, if they were your children,
would you give them away? It was never spoken of again.
As a young child, I had questions and prayers; questions
and prayers that still have not been answered: How did she
get sick; would the rest of us get sick; would she ever get
well; when will doctor's find a cure like they did for polio; or
will she die and when? I saw a faith healer on TV during the
fifties; shouldn't we take her there to be cured like people
who got up from wheel chairs and walked away? I was told
it was a hoax. Then there was, Why?...
Why can't Mom take me to school, go to open
school night, make me a sandwich, fix my hair,
finish that dress she had started making for me
and then had to abandon?
Why was God punishing her? What sin had she
committed? Since there was no medical rhyme
or reason for getting sick, she must have done
something wrong. I prayed every night during my
very young years, and asked my parents, again,
Why? Why wasn't God hearing me and helping
her, when she was just getting worse and worse,
and our lives were getting more and more
difficult. My mother told me she had not
committed a sin for which God was punishing
her; she said, "people cannot question the ways
of God." What and who can I believe in?
I have a son; a brother with a son, daughter, and
granddaughter; and a cousin (daughter of the only Barone
living sibling of 5, who hasn't been felled by a neurological
condition.) Who and how many more will be diagnosed? My
son asks me if it he will get PD, and I decide to have my
DNA tested. My cousin is worried about strange symptoms
that she is experiencing, much like the ones I experienced in
1996; I'm not sure what to say to her. She has two sons,
ages 6 and 14: will they ask the same questions I asked my
parents?
In 1967, I was able to enroll my mother in a double-blinded
drug study for L-Dopa at Columbia Presbyterian Hospital in
New York, where we're from. She returned home without
improvement, but with a supply of pills to continue taking.
She became very severely nauseous and ill for some time;
but she did something else as well: she turned over in bed
for the first time in almost 2 decades, and then one day, she
got up out of bed for the first time in as many years, and was
able to walk a little. I even have a picture of her "putting up
her hair!" These things had been impossible for her. But it
was not to last for very long. She was too advanced when
science developed L-Dopa; it was too late for her.
My mother was diagnosed in 1948, and died slowly,
painfully, and miserably in 1972, when she could no longer
move, recognize anyone, speak, or swallow, at 67 years
old--7 months after my son was born, who she saw, but
could not comprehend. I'm 54 now, and was afflicted with
PD in my forties, close to my mother's age of diagnosis. I,
like my mother, was in a double-blinded drug trial. There
has been promising research for PD reported in the media,
but realistically, PD treatment has not advanced
substantially, and sooner or later my fate will be the same as
my mother’s.
I was told that mortals shouldn't question the ways of God;
but mortals can question other mortals: why don't we know
the causes of PD, why can't we have better treatment than
we have, since for all the new therapies, people like Mo
Udall are still dying in nursing homes in the late nineties just
exactly as my mother did; and why is the Udall Act still not
fully funded? For God's Sake! For my family's sake, for Mo
Udall's family's sake, and for the sake of the nation: WHY?
Is the current generation of my family going to suffer the
same crisis of faith in God and Country? Let's all work for
success in speeding up a cure. My family and the nation
can't wait any longer for the calamity of PD to be wiped out.
It is time to act!
Charlotte Mancuso
Young Parkinson's Support Group
668 Channing Avenue
Palo Alto, CA 94301
