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.

Does lifestyle affect the condition of a person with HD?

Does Lifestyle Matter? Lifestyle matters but this area is just beginning to be researched. Because identical twins with the HD gene have been known to have different ages of onset, clearly factors are involved beyond genetics. What these factors might be are not clear, however. In his talk at the Guthrie Center in August, 2001, Dr. Wally Deckel suggested that exercise may play a part in delaying onset and slowing progression. Dr. Deckel explained that BDNF (brain derived neurotrophic
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It?s a Wonderfully Different Life

It is Thanksgiving evening and I find myself uncomfortably full and lounging in my home. My family, including my wife of 21 years and our 2 children, are scattered around the house in various stages of tryptophan comas (that drug that turkeys contain), either sound asleep or fast on their way there. I am relaxed, but not tired. My mind is reeling with so many thoughts, so many things to be thankful for, that I am too overwhelmed to sleep. You see, my life to-date has been full of harsh chall
Carlos A. Urrutia
Carlos.Urrutia@jpmchase.com

First Annual Huntington?s Outreach Project for Education at Stanford (HOPES) Conference

On May 11, we attended the one year evaluation and celebration of the HOPES project. It was a special occasion that gave us an opportunity to greet old friends and to meet the most talented, dedicated, and hard working group of students anywhere. Just one year ago, the HDAC team (Cristy, Steve, and Marsha) flew out to meet with Stanford University faculty and benefactors to discuss the development of a new Web site to provide up to date scientific information about Huntington?s Disease. Sta
Marsha and Steve
m.miller2001@comcast.net

There Once Was a Man

It was sometime in the mid 1980's that I came to know Harold. Living on the same block of a local nursing home, my teenage twin daughters and I would wander down there a few times a week to visit the patients we had come to know. Those who were ambulatory, went to the church across the street, where we attended. There was Patricia, in her 40's with Down Syndrome...Gregarious, always laughing, full of joy and eager to be a part of a "normal world." There was Mrs. King, who came to be my "litt
Allison Chambers Coxsey
goddess001@cableone.net

Here she comes... Miss America!

Let me introduce you to two families touched by Huntington's Disease that I've met in the last six months. A mobile home in a trailer park. Could be anywhere in the United States. But this one is in the suburbs of a small city in the Northeast. End to end on the couch lies a woman with her head and feet propped up with large pillows. All but her face is covered by a quilt. Her husband rocks in a recliner close by holding her hand under the quilt. The house is very orderly. It's also very
Jim Pollard
jjpollard@MEDIAONE.NET

What about counseling?

Get counseling! I personally believe that professional counseling by either a genetics counselor, or a psychiatrist well versed in all aspects of HD, should be pursued by all individuals who are considering testing, regardless of our individual knowledge or experience in dealing with HD. We may know the disease, but how many of us are really prepared to hear our future pronounced with irreversible finality, and I am speaking of both a positive or negative result. Provided by Ron C., E-mail: ro
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What should I expect from my doctor and what will my doctor expect from me?

What should I expect from my doctor? You should expect the following. Knowledge of HD or at least a willingness to learn about HD. (In that case you should provide them with the phone number to get a free copy of "A Physicians Guide to the Management of HD" at HDSA 1-800-345-4372) Honesty Patience in listening to my concerns and not with a "holier than tho" attitude. Accessability An upbeat attitude and outlook A willingness not to give up on me Compassion and willingness to work as a
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How do I find a doctor who is knowledgeable about HD?

Take charge! Ask questions or make phone calls to all the professional medical groups in your area. Check to see if you live within a reasonable traveling distance to a "Center Of Excellence". Get on the internet, talk to support groups in your area. If you live in a area far from the beaten path, then talk to your local doctors, even if he or she doesn't have hands on experience - are they receptive to learning? If so, you have a wealth of info available for them from such sources as HDSA, HDAC
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What do I do about dating and marriage?

Be Honest I would have to say, pursue relationships just as any other person would do, only let your creedo be Honesty above all else, make sure you and your Partner understand the possible risks involved,then work together to have a happy and full life,just be honest and willing to make the necessary adjustments,and this includes your chosen Partner. Provided by Ron C., E-mail: ronndi@SALMONINTERNET.COM Live life to its fullest We were given this life in order to live it to its fullest. That
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Who do I tell?

Go slow! This really depends a great deal on the person and their level of comfort. Here is my approach. The first thing I did was to tell only my closest family members and friends. I really need them for support. After that, I did not tell anyone for awhile. I needed time to figure out what this meant to me and my life and did not want to make any decision in case it was a bad one. After a few months, I finally started telling a few people on a need to know basis. Now... I do no
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