--- In huntingtonsatrisk@yahoogroups.com, scarfaceclawau
<no_reply@y...> wrote:
> -Well done Scott, you have certainly done a lot of work with this
> report. I agree with your Mum, she must be very proud of your
efforts.
>
> Keep it up. :)
>
> Debbie (Australia)
>
> -- In huntingtonsatrisk@yahoogroups.com, "Susie" <angelrose@c...>
> wrote:
> > I asked Scott if I could share his Health report with everyone.
He
> > said I could or you wouldn't be reading it here. I am VERY PROUD
of
> > how Scott's report turned out and of him. So much information for
> him
> > to go through. There are also personal thoughts about his ordeal
> > through a life with his Dad. Even though it was as short as he
> could
> > make it I see a lot of his feelings in it. Scott, I am so PROUD
OF
> > YOU! Mom
> >
> > Huntington's Disease Story
> >
> >
> > In 1872 an American called George Huntington wrote about an
> > illness that he called "an heirloom from generation". His was not
> the
> > first to describe the disorder. One of its earliest names was
> > Chorea, which as in Choreography is the Greek word for dance
> because
> > people who have this disorder moves and jerks a lot. In the
United
> > States alone, about 30,000 people have Huntington's Disease
> estimates
> > of its prevalence are about 1 in every 10,000 persons. At least
> > 150,000 others have a 50% chance of getting the disease. And
> > thousands of there relatives live with the possibility that they
> too
> > will have Huntington's Disease like there mother or father.
> > Huntington's Disease result from genetically programmed
> degeneration
> > of the brain. Huntington's makes the brain cells die down and
make
> > you live a very bad life with a lot of suffering. The other part
of
> > the brain that is affected is the out side of the brain or the
> cortex
> > that controls thought, perception, and memory. Huntington's
> > Disease is found in every country of the world it does not
> > discriminate. With Huntington's Disease if your dad or mom had it
> you
> > have a 50% chance of having it too and you have another 50%
chance
> of
> > not having it.
> >
> > Early signs of the disease vary greatly from person to person. If
> > they have Huntington's Disease they may stumble or appear
> > uncoordinated. They most likely have a very bad temper and
> stumbling.
> > Most sages of Huntington's Disease is uncontrollable it could be
> when
> > your 1 year old or maybe 83. But its just sometimes you can't
> > control.
> >
> > How do they diagnose you with Huntington's Disease? You have got
to
> > be 18 or older to be tested or you have got to have very good
> > symptoms of Huntington's Disease if you are under 18. All they
need
> > is a blood sample which takes 4 weeks or longer to get the
results
> > back.
> >
> > What is presymptomatic testing? Presymptomatic testing is a
method
> > for identifying persons carrying the Huntington's Disease gene
> before
> > symptoms appear. How does a person decide whether to be tested or
> > not. It is something you have to think long and hard on. Then if
> you
> > think you want to do it, you have to go to a Center of
Excellance.
> Go
> > through all their appointments with nurses, social workers,
> > phycologist, physiatrist and a neurologist. The anxiety that
comes
> > from living with a 50% risk for Huntington's Disease can be
> > overwhelming. Is there a treatment for Huntington's Disease yes,
> but
> > there is no cure or nothing to slow it down. There are
> > meds they can give for the symptoms.
> >
> > How is it to live with a person who has Huntington's Disease? It
is
> > very hard to sit there and watch your dad die of this disease
> because
> > he was just setting there suffering not getting nothing out of
his
> > life. So one day he goes to the hospital and I have to stay with
my
> > grandparents, that night I wish dad dead so he could finally be
> > happy and that very next day he died Jan 7, 2000. So before you
go
> > saying your life is bad think of mine.
> >
> > By Scott Adams


Hi Scott,

My name is Mary and I am 45. My Mum is also from Australia,
Brisbane. I talk to Ian (oonied)quite often. My entire paternal
family died of HD and now I have it.

I saw my grandfather pass on, my Dad and all three of his brothers.
I have four brother who haven't been tested, whom are at risk.
Several cousins and one second cousin have it. One commited suicide.

My Mum found out when a social worker from the University of Michigan
came to her house in the 60's and told her that HD was in the
family. By that time (being the good Catholic family who doesn't
believe in birth control, lol), they had five children. She must
have been terrified!

She took care of my Dad for 20 years and now she is in poor health.
My Dad was in the VA hospital for seven years and had dementia so bad
he lost all track of time. Finally he'd succumb to a sepsis
infection that took over his entire body. I prayed to end his
suffering and he died that very night at 4:00 a.m. We got the call.
He was 68 years old. We signed a document for no extreme measures.

I started with symtoms young, in my twenties, with depression, rages,
mood swings. Now I am fatigued and in a lot of pain because I also
have Rheumatoid Arthritis, sciatica and discs out in my neck from
injuries on the job. I've been on Social Security Disability for
five years now. A lot of my family and friends don't understand.
That makes it a daily struggle.

I am terrified because I don't want to go into a nursing home and
deplete all of our assets. I feel like such a liability on my
husband Jeff, even though he has been my rock, literally. I just
hope and pray for a cure.

We have been very active in the HD Association. When I lived in Ft.
Wayne,Indiana. We had to drive two hours to the closed support group
meeting in Indianapolis. I thought it was rediculous because Ft.
Wayne is a city of 250,000 people. So I helped start a group in Ft.
Wayne and it took off like gang busters. I am writing a book
entitled "Hiding Out With Huntigton's" and we were both interviewed
at a local television station. The video's are shown at support
group meetings and they've helped a lot of people. If you go to
google.com and type in (Mary Bobrofsky), you'll see part of the
journal I keep. It was presented at the 2001, National HD
Convention, where Phil Hardt was the keynote speaker. I engaged him
in conversation for about a half an hour, he's a cool guy and very
articulate. He is my age and was an engineer and had to quit his
job. He spoke on depression and the enormous suicide rate (7 to 8
times the national average. He called it "Being in the Trenches,"
and losing your capabilities, watching them slowing fading away. And
about preparation for the inevitable.

Anyway, I'll stop rambling here.

Please email me. You have my permission

email: JBobrofsky@...

I would love hearing from you.

God bless you Scott Adams. Your Dad is with mine now and no longer
suffering. I miss my Dad but I have a lot of good memories. Some
make me laugh and some make me cry.

Sincerely,

Mary Bobrofsky