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.

What about Advance Directives?

Disclaimer The information provided here is NOT a substitute for legal or medical advice. Web sites are notorious for being out of date, especially in respect to legal advice since state and federal laws change constantly. We are not lawyers nor medical professionals therefore we cannot be responsible for obsolete or outdated material provided by the sites to which we link. We strongly recommend that you review this information with legal counsel or medical professionals before making any d
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Predictive testing: method, options and issues.

A Personal Decision I feel VERY strongly that to test or not is a personal decision and can ONLY be made by the at risk individual. However, as a formerly at risk individual who entered and completed the standard HDSA protocol through University of Virginia, and tested negative thank God, I have to say in their defense that many good things came out of following that protocol for me. I started out angry at them for making me feel as though I couldn't make my own decisions and that I
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How do I cope with the uncertainty about myself and my children?

Some Suggestions from the Field My mother had HD. I was tested (negative) about five years ago. I've never regretted being tested, although some people with negative outcomes do have problems (survivor's guilt, etc.). If you don't have the defective gene, then neither will any of your children. Looking at it another way, you have a 50% chance of having inherited the gene from your hd parent, and, if you did, your children would have a 50% chance of inheriting it from you. The experts w
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How do we talk to the children about HD

Available Resources I have often heard experienced parents say that telling a child about Huntington's Disease is a lot like telling them about sex -- you answer their questions honestly with age-appropriate information. As with the birds and the bees, you want to be your child's primary source of accurate information, but that may not be the case. If you tell your children the name of the disease that is affecting their parent while hoping to postpone the issue of their at risk status until
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There was no known history of HD in our family. How do we tell other family members?

A Personal Experience Since there was no known family history of HD the first thing we did was check the death certificates of our grandparents. Turns out that at the time of death my grandfather was misdiagnosed with Parkinson's. Back then very little was known about HD. So, the first thing is to check family history, then start calling any siblings of the Phd to let them know chances are that one or some may be having the same symptoms and not gone to a Dr. or been told that there is
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What are the symptoms and stages of HD?

Total Functional Capacity Scale Clinicians and Researchers commonly use Ira Shoulson's TFC scale to judge progression. DomainLevel of FunctioningScore OccupationNormal3  Reduced capacity for usual job2  Marginal work only1  Unable0 FinancesNormal3  Slight assistance2  Major assistance1  Unable0 Domestic ChoresNormal2  Impaired1  Unable0 Activities of Daily LivingNormal3  Minimal impairment2  Gross tasks only1  Total Care0
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When should chorea be treated?

Treating Chorea - A Caregiver Dear friends, There has been something of a debate on here [hunt-dis] recently concerning the treating of involuntary movements, particularly chorea. Jerry was kind enough to post the URL for an article about some research into chorea. I will repeat it here and urge anyone who has not yet read this article to do so. http://hdlighthouse.org/see/index.html?/see/care/chorea.htm. One of the doctors involved in the above research, Dr Crauford, is my wife's HD
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How can we inspire an unmotivated Phd?

Understanding the Problem Editor's Notes: When people with Huntington's Disease begin to decrease their activities, their families and friends often assume that they are unmotivated. This is not true. There are symptoms caused by Huntington's Disease which can affect behavior in this way. First, apathy can be caused by depression which can be treated through medication. Second, the disease affects one's ability to initiate and sequence tasks. In the article below, Lou Wilkinson, a wife,
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Is there any way to enhance multi-tasking skills?

Not Yet There doesn't appear to be any way at this time to enhance multi-tasking skills. Apparently, habitual actions are normally controlled by the basal ganglia in the brain, freeing up the cortex to direct actions that require more thought. When we do a task that we are familiar with, say, folding the clothes, we can go ahead and do something more involving as well, say, watching TV or holding a conversation. With the damage to the basal ganglia caused by the progression of Huntingto
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Disclaimer

Disclaimer

Just like most Web sites and any publication that offers information to the general public, we too must provide a disclaimer.

The HDLF site is designed for educational purposes only and does not engage in rendering medical advice or professional services. The information provided through HDLF should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If you have or suspect you may have HD or any other neurological health problem, you should consult your physician or a neurologist.

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