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 disability options are available in the US (state and federal programs), and other countries?

The Medically Needy and Miller Trusts In the United States, individuals whose incomes are too high to qualify for SSI but not high enough to pay for needed nursing home care may still be able to qualify for it under their states' programs for the 'medically needy.' Some states put a dollar cap on income in determining who can be considered medically needed. In those states, it may still be possible for someone to qualify by the use of a Miller Trust. Programs vary by states and
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How will this affect my employment?

Some Things to Consider As Huntington's Disease progresses, it will become increasing difficult for an individual to perform his job duties. There are many employment issues to consider. This information is no substitute for legal, medical, and financial advice by qualified experts but instead is intended to be a helpful (but not comprehensive) review of some of the employment issues that Phds and family members have encountered. Choosing the right insurance package. It is very importan
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Preparing for disability

A Personal Experience with Short Term and Long Term Disability Insurance 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 d
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Making the tough decisions.

A Caregiver's 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 li
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What are the possible sexual problems caused by HD, and what can be done about them?

From the perspective of a caregiving wife. First let me say how difficult it is to write about this painful time in our lives. However since I had no one to talk to at the time, my hopes are that this may help someone. Some people may be offended; I hope not. This is not meant to offend at all but it is a very difficult subject to read about... First of all let me explain that we only found out about HD in the family just a few years ago. The story I'm about to tell you really started way
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What are some effective methods to calm an aggressive or violent Phd?

A Personal Experience Is there any real way to cope with behavioral problems? I guess it depends on you and your situation, as everyone's is different. Frank was a very nice, gentle soul who never had a bad word to say about anyone. He was always willing to help wherever and however he could. He was taken from his family at the age of 12 and was raised by an aunt and uncle with three daughters. It was my family and I that taught Frank what a family was like. He adored my parents and brothers.
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What are the different behavior problems that can accompany HD and how can the person with HD and family members cope?

Publications The best available guide to understanding and managing behavior problems in HD is Understanding Behavior in Huntington's Disease by Jane S. Paulsen, Ph.D. This 46 page book is a 'must have' for HD families. It's available from the Huntington's Disease Society of America at www.hdsa.org . Click on Education and then Publications. Dr. Paulsen explains how behavior is affected by the brain, the environment, individual factors, and other health factors. She suggests approaches for
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How do I handle incontinence?

Facing the Loss of Bladder Control Many of the following ideas, experiences, and suggestions discussed here came from the many members of the HUNT-DIS community and I'd like to thank them for their selfless commitment to supporting those who have just learned that this terrible disease has affected their lives and are now searching for help. - Steve Ireland Most people at some stage of HD will be faced with the problem of incontinence (the loss of bladder control). Unfortunately t
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What causes HD?

HD Biology for Dummies Patterns of Inheritance Genes determine biological traits. The nature of the gene determines the nature of the trait. A mutant gene, such as the gene for HD, produces an aberrant trait. You have two copies of every human gene, one copy inherited from each of your parents. (Except for the genes on the X and Y chromosomes if you're male.) The mutant gene for HD is said to be "dominant" because you only need to have inherited one copy from one parent to produce the d
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A Spiritual Connection

A former pastor and I had been meeting for lunch about once a month, usually discussing the latest developments with HD and it's effects on my wife, Libby, and our three children. The conversation would wind around to how I was coping, or not, and he would always give words of hope and encouragement. When we met last week, he offered some words of advice that really made sense regarding my efforts to continue to communicate in a positive way with Libby. Physically, she is only receptive to
Jim Keating