HD Family Life

Hope Springs Eternal

Most people would struggle with having this brutal illness called Huntington’s disease. Most people see it being horrible. I don’t. The trick is seeing Huntington’s for what it is, a blessing in disguise as something horrible. It is a blessing to me. Tragedy can bring families closer together; in ways only illness can affect. Many people will not ever have that close bond. They will take each other for granted. My husband and I will never take each other for granted. Nobod
Heather Dugdale

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 ...


EHDN and World HD Congress

Dresden,Germany. September 2007. I was looking forward to the meeting in Germany this year as I had never been to Germany before. It was more exciting for me as JHD had a much bigger part in this years agenda. It was also the chance to meet up with old friends and make some new ones. The Friday and Saturday were the meetings of the European Huntington's Disease Network. On the Friday we had presentations on "Weight loss in HD", "RNA therapeutics-a cure for HD or a dream without a future?"
Gordon Robertson

Fear of Being a Burden

Fear of the future is of huge concern to people who have HD and their caregivers and family members and friends. There is no crystal ball to see what the future holds for any of us whose lives are affected by Huntington's Disease. I have heard a fair amount of horror stories from friends of mine who also have HD. There are so many different sides to each and every facet of HD. Some mates leave and some mates stay for the long haul. I think it comes down to some people being the caregiver typ

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

Living life to the fullest

One of lives enormous tragedies is having a child diagnosed with JHD -- no cure,no hope,no chance. I consider that wrong. What the diagnosis produces is the ability to realise what life is all about, what we should be doing instead of mourning the inevitable is living it. I found it really tough for the 1st year. I cried over and over again; what could be worse than this? No warning is worse, no idea that your child could ba taken away through some kind of disaster. We never know what tomor
Gordon Robertson

Family and Friends

One of the blessings that come with Huntington’s Disease in the family is that you will, if you do not already, come to treasure the family and friends who offer continued support and friendship as well the new friends who will become your extended family. We live in a society that glorifies youth, beauty, and health, devalues the elderly, and denies the reality of death. This pretty much guarantees that there will be family and friends who will be unable to offer the support we need
Marsha L. Miller, Ph.D.
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