Hi all,
You won't all like my take on this, but I felt it needed saying. I also
don't relish sharing painful accounts of my personal experiences with
PD, but I simply don't know what else to do. I am beside myself with
feeling had once again. It is so easy for them to look and walk right
past us. I want to rebel. --Charlotte
-------- Original Message --------
Subject: Fwd: "Three Generations of Parkinson's: A Crisis of Faith"
Date: Sat, 30 Sep 2000 00:56:47 -0700
From: Charlotte Mancuso <[log in to unmask]>
To: [log in to unmask],[log in to unmask],
[log in to unmask],[log in to unmask],
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[log in to unmask]
Honorable Member of the Senate,
Please take the time to read the following message, and try to
understand that those of us with PD, that anyone afflicted with
virtually any disease group, and that the Nation cannot be put off any
longer. Please don't allow those few members of Congress curtail
vitally needed stem-cell research. It is abundantly clear to a majority
of the American people that this issue is, largely, not a religious one
or one of conscience. It is simply a political one. Some, if not most
members of this small, extreme group, care neither for the lives of the
unborn nor those of us who are afflicted with devastating illnesses.
They care only for their political lives.
With respect, do the right thing and vote on the stem-cell research bill
by Senators' Specter and Harkin, and keep the agreement made since this
time last year between Senator Lott and Senator Spector--an agreement
made also with the American people. We have waited--we have been
patient--we cannot wait any longer. Please do not allow the few hold
the health of millions and the health of the Nation hostage. Please let
this responsible research move forward, so that millions of us can
literally move forward with our lives.
Respectfully,
Charlotte A. Mancuso
668 Channing Avenue
Palo Alto, CA 94301-2812
Advocate, Michael J. Fox Foundation for Parkinson's Research
Member, Young Parkinson's Support Group, Palo Alto, CA
Board Member, Peninsula Parkinson's Support Group, Sunnyvale, CA
-------- Original Message --------
Subject: Revised--THREE GENERATIONS OF PARKINSON'S DISEASE: A CRISIS OF
FAITH
Date: Fri, 29 Sep 2000 23:56:53 -0700
From: Charlotte Mancuso <[log in to unmask]>
Reply-To: [log in to unmask]
To: [log in to unmask]
The Honorable Senator Specter:
I must express my deep, deep disappointment over the decision not to
invoke cloture, and to postpone the vote on your stem-cell bill.
Indeed, according to the record, it seems that we can only hope for a
vote early next year. To help you understand that the Parkinson's
community can't wait any longer, I urge you to read my personal account
with my experiences with PD as a patient, but first as a caregiver when
growing up.
Please do not put us off any longer.
Respectfully,
Charlotte A. Mancuso
668 Channing Avenue
Palo Alto, CA 94301-2812
Advocate, Michael J. Fox Foundation for Parkinson's Research
Member, Young Parkinson's Support Group, Palo Alto, CA
Board Member, Peninsula Parkinson's Support Group, Sunnyvale, CA
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; my mother, Anna, and her siblings Laurie, Nellie,
Peggy with Alzheimer's, and now her daughter, Charlotte. We have all
suffered from PD, a devastating neurological disorder that destroys
brain cells affects the body's motor function, cognition, 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. Her disease progressed rapidly, and when I was in grade
school, she required 24-hour care, which we alone provided. My Dad
carried the largest burden, especially at first, but all three of us
pitched in, stuck together, and carried the load for 24 years. When I
was to start kindergarten, I instead had 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, who later in life died of Alzheimer's, and Uncle Tony; my brother
would go to his God Parents, my father's sister Mary, who now has
Alzheimer's and her husband Frank. 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. 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.
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, finish making
my dress she 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 sibling living 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, in time, did something for the first time in almost 2
decades--turned over in bed, 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. 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; she died slowly,
painfully, and miserably in 1972 at 67 years old, when she could no
longer move, recognize anyone, speak, or swallow. Her death occurred
just seven months after my son was born, who she could see, but could
not comprehend.
I'm 55 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 should we wait for the possibility of a vote on Senator's
Specter's stem-cell bill until next year, after the election.
* Why must the development of better treatments be curtailed by a
handful of extremists holding both sides of the aisle hostage?
Since, for all the new therapies that exist now, people like Mo
Udall are still dying in nursing homes in the late nineties just
exactly as my mother did in the sixties; and
* Why is party politics more important than advancing therapies for
millions of our Nation's people?
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 and a myriad of
other diseases to be wiped out.
Charlotte A. Mancuso
668 Channing Avenue
Palo Alto, CA 94301-2812
Advocate, Michael J. Fox Foundation for Parkinson's Research
Member, Young Parkinson's Support Group, Palo Alto, CA
Board Member, Peninsula Parkinson's Support Group, Sunnyvale, CA
