Community

Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.

We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.

A Life Decision

I'm very glad that you found the Hunt-Dis discussion group. These folks carry a wealth of experience dealing with HD. And if you deal with HD, they are the finest source of support. But your greatest need right now is not for support. You need time alone to think through your circumstances, and to do so in the most hard-minded way possible. You mention marriage. If [she] is, in fact, symptomatic for HD, please consider the following: Your love had better be entirely selfless. You cannot
Ken Pidcock

Make-a-Wish U.K. Charity

Hello Everyone, Just thought you would like to hear what we have been up to recently. Myself and Marc, who has JHD, took part in a sponsored bike ride to help raise funds for the Make-a-Wish UK charity. As you can see we were lucky enough to use a special bike call a Duet. It is a bike with a wheelchair attached to the front. It is very easy to use as I found out. On the day of the ride of five and a half miles I almost passed out. I guess it was the excitement and stress of it all, and t
Angela Boomer
angela-boomer@lineone.net

The Caregiving Experience

Caregiving is not a job for everyone. I have said it takes a special person to give care day in and day out. Some can do it, some can't. But if you are one who can't, don't feel badly if you have to place your loved one in a care facility. You still give them care! You have to make sure they are well taken care of in the facility. And there are several reasons why you may not be able to keep your loved one at home. We all do what we can to help our loved ones with HD live a full, productive lif

Susie
sue@cameron.net

Reasons for Hope

This millenium year is clearly a breakthrough year for HD research. Researchers have discovered three new ways to help the HD mice -- creatine, CoQ10, and minocycline -- in addition to the caspace inhibitors which were successfully tested on mice in 1999. Although this is wonderful news, it will be awhile before we know if any of these will delay onset or slow progress in people with HD. The results of a clinical trial with CoQ10 will be available in the first half of 2001; clinical trial
Marsha L. Miller, Ph.D.

Preparing to go out on Disability Retirement

Once I had gotten back my "positive" blood test results I didn't know whether or not I should tell them at work. I was already experiencing symptoms such as lack of coordination, losing my balance frequently, walking tilted over to one side, and forgetfulness. I had read the horror stories about those who were demoted because they couldn't handle their current job responsibilities and then, when they finally went out on disability, they went out at the new, lower pay scale, not the original on
Phil Hardt

de Redfish and Susie

Susie and de Redfish met in the winter of 1993-1994. Susie had been divorced for 7 years and working at her profession as a nurse for a home health care facility. Redfish had been retired for 2 years, having taken early retirement from a major pharmaceutical company where he had been Director of Quality Control/Quality Assurance. A year earlier, Redfish had lost his wife of 30+ years after she had put up a valiant battle against lymphatic cancer for seven years. At the time they met, Susie was
Delbert T. Jeter (de Redfish)
redfish1@hiline.net

Positive Living with Huntington's Disease

Good morning. My name is Phil Hardt. I'm going to talk a little about "Men Dealing With HD." Three years ago, when I first began experiencing enough repetitive problems that I was forced to admit that I might have something the matter with me, I was still working full time at AlliedSignal Aerospace, teaching part time at a local community college three to four evenings a week, serving as a youth counselor at my church, and in my spare time I was a husband and father to my eight children
Phil Hardt

Please tell me how to cope!

This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!! My heart and soul died several times every day in the last few years of Kelly's care and especially the last 6 months of her life since she went downhill so very quickly. To have to tell your child that it is okay to let go, i
Jean Miller
jemiller@tampabay.rr.com

HD, Marriages and Relationships

Some observations I've been making over the last couple of months regarding the impact of HD on marriages and relationships: HD is hard on marriages because since our spouses have known us for many, many years, and since we look the same physically, they also presume that we're the same person they've grown to know both emotionally and cognitively. However, in the early stages of HD there are mostly mental, cognitive, and emotional disturbances that begin so subtle that one never associates the
Phil Hardt