Living at Risk

To Live 'As If' - My Story Chapter VIII:The Long and Winding Road Comes to an End

I had not seen my sister since Christmas 1997 and here it was February 1998 already. Deb had been off work for a year now and was home all day. I was also at home now, raising my 2-year-old grandson full-time. Deb and I connected by phone many mornings and our conversations were mostly very pleasant. She had taken quite a fancy to my young grandson and he to her, so she would ask me to put him on the phone and, when she didn’t I ‘used’ him to fill those awkward conversational g


To Live 'As If' - My Story<br>Chapter VI:The Second Year <i>Fear Factors</i>

1996 was the final year we lived in the land of pretend, my sister and I. I took her side, always when she called to rant and rave about what her estranged-husband was now ‘accusing her of’ or demanding she do. In return, she made regular visits with her son, my delightful nephew who had just turned 14. I had always felt that my nephew and I shared a special connection. Where Deb and other members of the family, chose defense mechanisms of extreme silence for shutting out painful eve

To Live 'As If' - My Story<br>Chapter VII: I'm Okay, You're Not

1997 was my third year of living ‘at risk’, while dealing with my sister who had Huntington’s. Why, I wonder now, as I lived those years and even when I initially looked back, did it seem such a long time? The only answer I can summon is that time was compacted. We had no more than a minute to digest the information and implications of my sister’s having Huntington’s, than began a series of issues, crises and events that were pathway to the downward progression of h

To Live 'As If' - My Story<br>Part IX:Happy Birthday to Me

When you come to awareness of the risk of Huntington’s Disease a bit later in life, the Birthday business takes on new meaning and import. Huntington’s was not a fact of my life until I stared down its most obvious symptoms as they manifested in my older sister. She was 41 at the time and I was 38. I played a numbers game with the next few years, our next few birthdays. Each time she added another candle to her cake, I was subtracting instead, watching her closely as she waved the cu

Ray's Story: From One At Risk

First, A brief history: Huntington's Disease runs very near 100% in my family from the maternal side. I have researched seven generations and have not found one person who does not have HD. I have known what I was up against from early childhood. I have seen HD from JHD in a 15-year-old cousin to late onset in an uncle that was near 80 when symptoms began. My mother died at the age of 42, I have a sister that was diagnosed at 25 and still in a nursing home, and another sister who was diagnose ...


How to Have Hope Today, Even If You&#8217;re At-Risk for HD!

In 1992 Nancy S. Wexler wrote “The Tiresias Complex: Huntington's disease as a paradigm of testing for late-onset disorders” from a purely medical and personally predisposed perspective. She begins this paper with: “The Blind Seer Tiresias Confronted Oedipus with the quintessential dilemma of modern genetics: ‘It is but sorrow to be wise when wisdom profits not.’ (“Oedipus Rex” by Sophocles) How ironic that Sophocles would make the blind seer Tires
Phil Hardt

To Live 'As If' - My Story<br>Chapter V: The First Year is the Hardest

If you have not gathered by now, dear readers, the fact that I am so far from saintly (as I have been depicted in my other writings about my sister?s battle with HD), I suppose this next installment of my story, the first year that I lived with HD, will strip me naked and expose the real ?me?. Toward the end of 1995, we were aligning, taking positions within the immediate family, where my sister was concerned. With three children, plus one grandchild in my care, my position carried weight, I

To Live 'As If' - My Story<br>Chapter IV: A New Arrival Very At Risk

The birth of my grandson in August 1995 was less than a blessed event for me. While my 17 year old daughter basked in the attention of laboring and birthing new life (with myself and 9 of her friends in attendance), and then the visits, presents and adoration of her son in those early post-partum days, my emotions were being tossed as though through a cement mixer. I wanted to love and embrace my grandson, wanted to congratulate my daughter as I passed the torch of motherhood her way. The proble

To Live 'As If' - My Story<br>Chapter III: Home is where the Heart Breaks

The minute we were home and unpacked from that July 1995 vacation, where I first realized that my sister almost certainly had Huntington?s Disease, I hit the phones. My sister had split off from our party at her East Bay Area home, taking her son who was to spend the following few weeks with his father. I placed my first call to his father, my brother-in law. He and my sister did not live together, for reasons best kept private, but he cared deeply for and about her, and shared custody of their

Mom, I have Huntington Disease; I am sure.

I knew, even without the test, that my husband, Tony, had Huntington?s Disease. But for whatever reason I never considered the possibility that our sons, Jason and Eric, could have the disease even though I knew they were at the typical age of onset. It was a thought that I could not face, I suppose. Denial can be a healthy thing, protecting the heart from the hurt that the knowledge would bring. As I sat in Jason?s office one day, he turned his chair and faced me. ?Mom, I have Huntingt
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