HD Family Life

Odds and Ends

Having Huntingtons Disease can be incredibly challenging for both the person with HD and the people who surround them. There are so many different HD symptoms that a lot of people are not really aware of. This adds a lot of stress to those relationships on both sides. Take something as simple as a smile. Logic would dictate that if someone is happy then they smile, and if they are unhappy then they do not smile. This is not so with Huntington's Disease. We can feel completely happy on the ins

Recommended Books and Movies for HD Families

A Beautiful Mind, (1998 book by Sylvia Nasar,movie,2001) starring Russell Crowe Story of John Forbes Nash. The movie gives a clear picture of a mind in the grip of realistic hallucinations, and how a Nobel Prize winner overcame the disability to finish his brilliant work. Awakenings, (1990) starring Robert De Niro, Robin Williams, Julie Kavner A true story of normal kids turned by a flu virus into mute, neglected, stiff, long term mental patients, and a Dr. who discovered L-dopa would he
J. Appleseed

Bill at the Polls

Last week the VA in Hampton Virginia came and put in a lift to take care of the electric wheel chair that would be coming soon for my 51 yr old son Bill. This week the new chair came. Bill was anxious to get "his jazzy wheels." He picked out the color, shiny black,and told me if I keep it clean for him, he will pay for my hair cut. Cool! The joy stick on the chair is very sensative, so the chair was geared at the lowest speed, to make it as easy as possible for him to steer. Tuesday
Ruth Hargrave

Organic Denial

I have often puzzled over why some people can see their own symptoms and others can not. I know this is a question many people have asked. How can my loved one with HD not know that they have HD when they have chorea? They think that on some level the person must know, after all denial is part of HD. But it is not in the way you may think. I have recently learned that there are two types of denial with HD. There is the standard psychological denial we are all familar with. That is when you be

Living Positively with Huntington's Disease

Good afternoon, my name is Phil Hardt. I am the HDSA 2001 Person of the Year and have been the current Chief Volunteer Officer for the Arizona Affiliate and Director of their Annual HD and JHD Retreat for the last 6 years. I had the privilege of testifying about HD in front of the NIH?s committee on Genetic Discrimination in 2004. Two months ago I had the bitter-sweet experience of traveling to Colombia, South America, to the city of Juan de Acosta to help impoverished families strugglin

Phil Hardt
phardt1@cox.net

Self-Advocacy, Part Two: Documenting Disability

Documenting a disability like Huntington’s Disease can be difficult because there are a multiplicity of problems that combine to prevent an individual from working. If it was just mood problems, they could be treated. If it was just involuntary movements (assuming that they aren’t extreme), the job could be redesigned around them. If it was just memory problems, there might be some ways to compensate. But it’s not – it’s all of those things plus deficits in exe
Marsha L. Miller, Ph.D.

Life's Regrets

Time becomes very important to someone with an incurable disease like Huntington's. There is no time to waste when it comes to living life and letting people know how much you care about them because there is no way of knowing when that time will run out. While it is difficult, we can not let yesterday or tommorrow use up too much of today. There is no time to waste on petty things that just do not matter in the big scheme of things. Now is the time to mend fences and work things out with lov

Family Education Day, Greater New York Region

Sunday, April 30 1:00 - 4:00 PM Family Education Day, Greater New York Region Columbia University New York State Psychiatric Institute 1st Floor Conference Room 1051 Riverside Drive @ 167th Street New York, NY Speakers will discuss the following subjects: Research update on HD Predicting HD Talking to children of all ages and current thinking on what not to do Long Term Financial planning Registration is $10.00 per person and pre registration is required PRE REGIST
Fran Kravitz

Life

Life can be such a strange thing sometimes. You are cruising along and everything is going great, and then out of nowhere life nails you. Bad things happen to good people all the time, leaving us with the choice to either sink or swim. And while swimming is tiring, sinking is not an option. I know back in 1997 when I found out I was at-risk and then tested positive for HD the Drs told me it was unfortunate that I had not been raised with my HD family, because I would have had people to mir

Genetic Testing for Huntington's Disease: How Is the Decision Taken?

Research on genetic decision-making normally constructs the decision as an opportunity for choice. However, minimal research investigates how these decisions are taken and whether those who live with genetic risk perceive the test as an opportunity for choice. Employing semistructured interviews with at-risk persons, this study explored decisions about genetic testing for Huntington's disease (HD)-a fatal genetic disorder. A primary aim was to understand how test decisions were perceived. Qualit
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