Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.

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

Insights into Huntington's

After years of wondering just what my "problem" was, I do admit that I am relieved that my problem finally has a name. I have always been very different from others and had a really hard time fitting in with those people around me. And I knew many years ago that there was something wrong with me because of my very odd feelings and behaviors. My "quirks" if you will. Imagine my surprise to see each one of my unexplained quirks listed under the emotional and cognitive symptoms of Huntington's w

Coping with Loss as a Caregiver

Taking care of a loved one with Huntington's Disease is never easy no matter whether it is a parent, a spouse, a child, or a friend. All along the journey there are triumphs and grace periods and lots of love, but there are also losses to be grieved. We lose our plans for the future, we watch our loved ones lose the ability to do things that once came naturally, and often we appear to lose the people they once were as the disease takes over. And sadly, we may be caring for more than one perso

Marsha L. Miller
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