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Huntington's Disease Story

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  • Susie
    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
    Message 1 of 3 , Feb 1, 2004
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      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
    • scarfaceclawau
      -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
      Message 2 of 3 , Feb 1, 2004
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        -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
      • jeff_bobrofsky
        ... efforts. ... He ... of ... OF ... United ... make ... of ... chance ... to ... need ... results ... method ... Excellance. ... comes ... is ... his ... my
        Message 3 of 3 , Feb 2, 2004
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          --- 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
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