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.

Feeding Tubes

First, I'm sad to say that I lost my daughter Kelly to complications from Hungtington's Disease on November 15, 1998, a few months shy of her 31st birthday. Kelly was able to enjoy several more years of LIFE because of her decision to have a feeding tube. Here are a few more things we learned, from experience, after having the tube inserted. Importance of Getting Information On The Type Of Tube Make sure the hospital or surgeon give you all the information on the type of tube they insert
Jean Miller
jemiller@tampabay.rr.com

A Tribute to My Parents

My parents would have been married for 47 years this past Christmas Eve, but my mother died 17 years ago. I think about all the times we went to see my mother and the times that she was home. I think about how her eyes lit up seeing my father walk into the room; even when she couldn't talk anymore, her eyes did it for her. I think about how she would reach her arms to him for a hug, and she was moving so much from chorea, and it was an effort for her to make that concentrated movement to g
Debbie Hart
bbwlady@yahoo.com

A Letter to the President

January 27, 2001 Dear President Bush: I want to welcome you to your new position and wish you luck. President Bush, upon attaining this noble and powerful office of "President of the United States," you stated that you wanted to be president of "all the people". I think you should have qualified that statement as "all the right wing extremist people." So far, the only people you have represented is the radical right. Mr. President, you wish privacy for your two beautiful daug
Regina L. Silver-Koplo

When the Running Stops

What began simply enough with a phone call would forever change a number of lives. It is the same thing that countless others across this great big world of ours face on an increasing basis. For some the news comes with the ring of the phone, the word of a doctor, a piece of paper, a family member on some far away island. What brings us together is the emotions that come with it. What makes us alike and human is that we all "feel". While those emotions are never exactly alike I can

Julie Sando
res057cl@verizon.ne

HD Sucks

Mommy and Daddy are fighting Over some silly late, late show. My Daddy threw some glasses at my mommy As she was packing his clothes. My brothers and my sisters are crying 'Cause Mommy is down on the floor. My brothers and my sisters went to their rooms Because they didn't want to see any more. Mommy and Daddy, stop fighting We all know what HD can do. Mommy, go find a new friend. You sure can do with a good day, too. The police, they took away Daddy. He's been threatening
Gerry

I don't want a cure! <g>

I found myself in deep meditation the other day wondering what life would be like if a cure really DID happen. The first thought that came to my mind was about how hard it would be to get my drivers license back. Almost five years ago I turned in mine after I started having problems rear-ending people and running red lights without caring. It had an expiration date of 2025! That's right, 25 years because of my excellent driving record. I just dropped it off at the Motor Vehi
Phil Hardt

Story of a Caregiver

His face is care-worn. Deep worry lines speak of the sadness he harbors. His back is bent under the weight of the burden he bears. His life, his love, his soul mate. His responsibility. He feeds her, bathes her, dresses her. He makes sure she gets her medications when she needs them, makes sure she gets to the bathroom when she needs to go. Sometimes, when she's lost in the fog of her far away world, she just "goes" wherever she sits. He gently and patiently cleans her. He cleans
Vicky Pratt
gpeech30@yahoo.com

Huntington's Disease ~ A Metamorphosis of Life

Huntington's has made my life a strange metamorphosis from a child, youth, adult, wife, homemaker, mother, teacher, then....curling up again into my protective cocoon. Shrinking into the hard case of a chrysalis forming round me, protecting my inner self from the critics, confusion and careless thoughts. Many days have past since the real me became trapped inside, hoping to escape the depression, suicidal thoughts, loss of worth and independence, and the other confused feelings a
Ardith Newbold
beaknbill@aol.com

The Last Generation

The American Heritage dictionary defines generation as "a group of individuals born and living about the same time." Generations have recently been given catchy names such as "Baby Boomers, Baby Busters, and Generation X. In his 1998 book, NBC news anchor Tom Brokaw chronicles what he calls "The Greatest Generation." In this collection of stories from veterans and others from the WWII era, Brokaw "salutes those whose sacrifices changed the course of American history." As inspiring as these
Carmen Leal
Carmen@writerspeaker.com

How Does It Persist?: Huntington's Disease as a Case Study in Population Genetics

Everyone whose life has been turned upside down by Huntington's Disease has to wonder why such a horrific disease should burden so many people. Students of philosophy may well conclude that the question is one that we cannot answer. Students of genetics, however, are not content with that conclusion. Evolution has shaped the distribution of our genes, and some evolutionary process must have led to the current situation in which as many as 1 in 10,000 persons carries the gene for HD. What
Ken Pidcock