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  • Rustey Meyer
    First, I am so grateful for this group. I ve lost my dad, sister, 2 nieces to HD and my oldest brother who has been through all of the caretaking since being
    Message 1 of 49 , Oct 7, 2012
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      First, I am so grateful for this group.  I've lost my dad, sister, 2 nieces to HD and my oldest brother who has been through all of the caretaking since being in his teens has been diagnosed with PTSD, caused directly from HD.  I sympathize with you all who've lost a family member and/or a friend from HD.

      My dad was also adopted, raised by people who knew nothing about HD.  When my dad was diagnosed with HD, his family claimed that Johns Hopkins was wrong & that his job as the officer in charge of the electronics on the first nuclear powered cruiser of the world (USS Long Beach) was the cause of his problems.  We'd love to find our relatives, now that we have found help for our HD family members.  But because of the adoptive family's denial, we can't even find my dad's birth father's birth certificate.

      Ancestry.com has been helpful in nailing the area(s) where the man who would've been my grandfather was born and from.  Perhaps that site could help others, too, if you're interested in investigating family history; yes, even HD history.

      Does anyone out there know of a David Leslie Todd family ?  He was born in and/or lived in one of these states:  MN or ND or WI? 
      ~ Rustey

      On Oct 6, 2012, at 11:17 AM, urlilangel96 wrote:


      I also found out that my brother's father was adopted so it makes things even more difficult to investigate.

      --- In huntingtonsdiseasesupportclub@yahoogroups.com, "Dave Hodgson" <SpikeTDog@...> wrote:
      > Ally, can you give us more information about his mom and what she died of? Did she die with confirmed Huntington's disease? The test for HD is very reliable. But you must take the test in order for it to be confirmed HD (or NOT HD). No knowledgible doctor would tell you that you "have trace amounts of this desease..." You're right about the prognosis for HD. It usually appears between the ages of 30 to 50, gets progressively worse, until the person must have help to do everything for them. Generally speaking it can last from 10 to 25 years and there is no treatment or cure. If one has the mutated form of the gene, one will die with HD. You don't die from HD; you die from the complications caused by HD. Where do you live? I'm near Chicago in the States and lost my mother-in-law, my wife, and two of her siblings with HD. I remarried my current bride who also lost her husband to HD. We take care of her 39 years old son who tested positive for the mutated gene in 2002. My oldest, a son, tested positive for HD in February of this year.
      > Best regards
      > Dave Hodgson
      > Illinois Chapter TEAM HOPE-Walk For A Cure
      > http://www.HDWalk.org
      > Ill. Chapter-HDSA Web Page
      > http://www.hdsa.org/il
      > Sponsor Dave & Susie's Walk
      > http://www.firstgiving.com/fundraiser/david-hodgson/daveandsusie
      > ----- Original Message -----
      > From: Allison K
      > To: huntingtonsdiseasesupportclub@yahoogroups.com
      > Sent: Sunday, September 30, 2012 11:57 PM
      > Subject: [Huntingtons Disease Support Club] Hello
      > My name is Ally and I have a half-brother who will be 38 at the end of October who may have this disease. My half-brother, who is also an alcoholic, had an issue a few weeks back where he was sitting at the kitchen table and his hand started shaking. Then he fell on the floor and was having what he & my half-sister called a seizure. My brother went to the walk in clinic by my dads(he has no job/insurance) and they told him he has trace amounts of this disease in his blood. From my understanding of reading things online this disease is not curable & progresses more quickly in those who are substance abusers. From onset it is said the person has 10-20 years before death. My brother has been drinking heavily since my mom's mom and her brother passed away roughly 11 years ago. He's been to AA, court ordered rehab, jail & nothing seems to keep him from going back to drinking. He exhibits many of the signs/symptoms of the disease including hallucinations. He woke my dad up at 3 in the morning to tell him his sister and her niece were there. Obviously not true. Any advice, information, suggestions, etc you could offer would be appreciated thank you!

    • Jen
      It s been awhile since I have posted here. I just wanted to say hello and send my prayers out to anyone who may need them. XOXO
      Message 49 of 49 , Jan 20, 2013
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        It's been awhile since I have posted here. I just wanted to say hello and send my prayers out to anyone who may need them. XOXO
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