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Thank you Kristin Davis

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  • ginnie grimm
    Hi this is Ginnie. Your parents were wise to adopt, but in retrospec even that is devastating as the disease developes. You asked about current treatments?Her
    Message 1 of 2 , Sep 1, 2002
      Hi this is Ginnie. Your parents were wise to adopt,
      but in retrospec even that is devastating as the
      disease developes. You asked about current
      treatments?Her is the little I can share for all. The
      study we are involved in will be studying Co-enzyme Q
      10, Creatine and other antioxidants. Antidepressants
      and other meds can control obsessive compulsiveness.
      The theary is that Huntingtons is a protein that once
      inside a cell detroys it. That is what causes the
      brain to desinigrate in places. This study will follow
      how certain antioxidants can help block that protein
      from entering the cell. If it proves positive, people
      with HD would take these supplements-life long
      starting at childhood possible to prevent progression
      of the disease. It will not change the genes of
      course, but will alter progression. Thsi does not
      leave hope for those already ill, but for our
      children. This may allow for early detection of the
      gene in at risk kids to prevent onset. It is not
      conclusive yet but it is the biggest ray of hope we
      have found so far. Technology has really helped this
      disease and so has education. I feel alone so often
      because my husband can not "feed" me emotiionally
      anymore-I must be there for him and our boys. It is a
      hard and heavy load, but HD has become my mission and
      I will never give up this fight. The best thing we can
      all do is seek out "Centers of excellence" these are
      clinics centered around movement disorders and genetic
      illness-they are the only doctors who know and care
      and try to help HD victims. Volunteer for studies,
      join support groups, surf the web. STudy, study,
      STUDY!! We are blessed with the ability to reach each
      other-this is one chain we don't want broken. Okay
      loved ones this letter is full of typo-s so sorry-my
      hand does not keep up with my head. I love you all-I
      know your pain - Lets fight this thing!!
      --- "Davis, Kristin S." <kdavis@...> wrote:
      > I do not have Huntington's Disease, but my mother
      > died of this disease a few
      > years ago. Luckily, when my parents realized the
      > risk (my grandmother, and
      > 2 of my uncles also had the disease) they decided to
      > adopt children to break
      > the chain.
      >
      > We were very involved in CCHD (the Committee to
      > Combat Huntington's Disease)
      > when I was a child and I know what this devastating
      > disease can do. I am
      > now 33, and research and treatment has come a long
      > way since I was a child.
      > My cousin has recently been diagnosed and he has
      > three children of his own
      > as well. Will the cycle ever stop?
      >
      > I am very astounded at all the positive messages in
      > the below emails, I
      > think you all are WONDERFUL, BRAVE, people for
      > keeping the hope for
      > yourselves and your families alive like you do. I
      > noticed a few of you have
      > mentioned treatment options, and if you wouldn't
      > mind, what are those? When
      > my mother had the disease, there was no treatment at
      > all - at least none
      > that she did that I know of. The doctor just gave
      > her Valium. And she WAS
      > an HD monster - very abusive and it tore my dad
      > apart watching her change
      > before his very eyes. I HATE THIS DISEASE! It
      > robbed me of my mother, and
      > in a sense, a father when I was growing up.
      >
      > I am from Columbus, Ohio and I have been hearing on
      > the radio that there is
      > to be a convention on Huntington's Disease at The
      > Hyatt Regency Hotel and I
      > am so glad that the public awareness for this awful
      > disease has grown so
      > much. When I was a kid, it was relatively unknown.
      >
      > Ginnie, I will keep you in my thoughts - I have two
      > boys and a wonderful
      > husband of my own and I cannot even imagine what you
      > are going through. You
      > all sound so strong and positive - KEEP IT UP! To
      > all of you with this
      > disease, or who have family with this disease, I
      > will keep my FINGERS
      > CROSSED that they find a cure - SOON
      >
      > Kristin
      >
      >
      > -----Original Message-----
      > From: ginnie grimm [mailto:ggmama2002@...]
      > Sent: Tuesday, August 27, 2002 8:16 PM
      > To: huntingtonsdiseasethemonster@yahoogroups.com
      > Subject: Re: [Huntington's Disease The Monster] Re:
      > I'm New, please help me
      >
      >
      > Hi anyone who will answer. I do not have HD, my
      > husband of 16 years does, as does his mom,aunt and
      > his
      > deceased grandmother. Our 3 beautiful sons are at
      > risk. It is so strange how my husband has changed.
      > It
      > is scary. The most ironic thing is he is so talented
      > and handsome. The perfect dad. I get angry at the
      > waste of this precious mans life and I lay in fear
      > for
      > my wonderful kids. We have good days and bad. Some
      > days Scott, my hubby, is himself. Other days he is
      > the
      > HD monster. But we are pulling through. We found a
      > center that treats and studies this disease. I have
      > attended seminars and we will participate as a
      > couple
      > in some studies to help find a cure. We are excited
      > about that-what if the scientist and doctors find a
      > cure during our study?? Wouldn't that be great?? I
      > read so much on internet about exciting things going
      > on so keep the faith everybody. Maybe it will all
      > work
      > out.
      > --- Erin Rogers <eburpsalot@...> wrote:
      > >
      > > Betsyjp---
      > > I aam certainly glad you replyed! If I may ask,
      > > what made you decide to get tesetd if you weren't
      > > showing signs? BLESS YOU FOR BEING TESTED!!!
      > > How old were you when yyou got tested? I have
      > > chosen to call Cedar Rapids my home--it is ssuch a
      > > wannabe small town! I pretty was raised in Iowa
      > > City--still have alot of friends --family--- I
      > > attend an awesome support group once a month at
      > the
      > > University. I have been in the area since I
      > was19(:
      > > Had a good idea to have a "TIME OUT'' to figure
      > out
      > > WHO I am--I choose the quad cities---and now I am
      > > back enjoying my independnt single life while I
      > can.
      > > It is thee whole future of hd and what will do
      > too
      > > me next i try not to think about it it is
      > still
      > > there in the back of my mind (: PEACE erin
      > > betsyjp wrote:Hi Erin,
      > >
      > > My name is Betsy and I tested positive in January.
      >
      > > I don't have any
      > > symptoms. My mom is in the end stages of hd.
      > Some
      > > of the things you
      > > said really struck a chord within me. Everyone
      > > wonders why I'm ok
      > > with my hd status. I think that the thing that
      > > keeps me from
      > > depression is not having symptoms. I also have
      > good
      > > and bad days.
      > > I'm sorry to hear about your struggles. I keep
      > > praying that they
      > > will find a cure very soon. What a coincidence,
      > my
      > > relatives live in
      > > Cedar Rapids!
      > >
      > > Take care, Betsy
      > >
      > > --- In huntingtonsdiseasethemonster@y..., Erin
      > > Rogers
      > > <eburpsalot@y...> wrote:
      > > >
      > > > GOOD AFTERNOON LISA,
      > > > THANK YOU FOR REPLYING! MY BABY SISTER WAS A
      > > TODDLER WHEN SHE WAS
      > > DIAGONOSED. ME? I WAS DIAGNOSED LAST YEAR AFTER
      > > SEVERAL OTHER
      > > DIAGNOSES WERE PROVEN WRONG IT IS BASICALLY IN MY
      > > HANDS, RIGHT NOW,
      > > I HAVE NOT PUT A CURLING IRON TO MY HEAD FOR OVER
      > A
      > > YEAR. I HAVE
      > > SCARS ON MY BACK FROM WHEN MY HANDS FAIL PUTTING A
      > > BRA ON! UNLOCKING
      > > AND LOCKING CAR DOORS, TYPING IS BOTHERING ME --I
      > > NOTICED THINGS
      > > WEREN'T RIGHT WHEN MY I WENT TO CHANGE MY NEPHEWS
      > > DIAPER AND MY HANDS
      > > FROZE UP!
      > > > I DO NOT WANT PITY FOR THIS DISEASE--I WANT
      > > UNDERSTANDING,LIKE
      > > ANYTHING ELSE IN ONES LIFE YOU HAVE GOOD DAYS AND
      > > YOU HAVE YOUR SHARE
      > > OF BAD DAYS TOO! WHEN I HAVE A BAD DAY, I LOOK
      > AT
      > > THE SUN AAND
      > > CURSE AT MY GRANDFATHER FOR GIVIVV ME THIS
      > > DISEASE--I EAT A BUNCH OF
      > > HOT TAMALES,,,,,,,ON GOOD DAYS I LOOK AT THE SUN
      > > PERFERABLY FROM MY
      > > BICYCLE AND THANK MY DAD FOR GIVING ME THE
      > STRENGTH
      > > TO BE WHO I AM
      > > AND TO EAT LOTS OF HOT TAMALES(:
      > > > I LIVE IN CEDAR RAPIDS, IOWA. I HAVE BEEN JOB
      > > BOUNCING FOR THE
      > > LAST YEAR AND HALF, I WORK UNTIL MY HANDS CAN NOT
      > > TAKE ANYMORE. I AM
      > > A SINGLE MOM OF A 12 YEAR OLD HEALTHY CAT, KITTY.
      >
      > > > THANK YOU AGAIN FOR TAKING THE TIME TO REPLY!
      > MY
      > > PRAYERS ARE WITH
      > > YOU-- E
      > > > lilmama312000
      > > > wrote:hi E.
      > > >
      > > > i am sorry to hear about your diagnosis i have
      > > been diagnosed for 4
      > > > years i just signed up for this group becuase i
      > > too feel like
      > > > huntingtons is a damn monster.
      > > > i am 32 years old and i am going through many
      > > symptoms of
      > > huntingtons
      > > > too!! i know what you are going through and if
      > > you need to talk
      > > let
      > > > me know. i am very clumsy myslef and the
      > > frustartion of losing my
      > > > mind and my body is making me so mad sometimes!!
      > > >
      >
      === message truncated ===


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