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.

Allison's Clinical Trial

Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.

Howard

Still Coping with my Test Results a Year Later

I had known since I was a kid that Grandma had had HD, and that I had a 25% chance of getting it, but felt that as long as my Mom was healthy, we were all safe. I never worried about it until the day that someone outside my family said "Do you think your Mom might have what your Grandma had?". I instantly realized they were right, and from that day I could not get it out of my head.

smiling sara

The Effects of Huntington's

Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present. The fact that I am very easily confused add a lot

Early Pre-Huntington's Symptoms?

The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others. I

Family

Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud. %TR% My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu

Managing Medications from a Caregiver's Perspective

Medications are one of the most difficult issues facing Huntington’s Disease (HD) caregivers and patients (pHD). What medications do we need? Who should prescribe medications? What dosage? Why do doctors prescribe one medication for a patient and other doctors prescribe another drug? Are medications really needed? Why is my pHD taking so many medications? What are the short- and long-term side effects? What happens if I stop the medications? Can I change the dosage or change the t
Dave Kendall

Using Your Words

Learning how to use your words can take a lifetime to learn. Learning to verbalize what we want or need from those around us can be a scary thing. Some people just are not good at expressing themselves. It is an art that takes a lot of practice, and it all begins with the realization that the people around us are NOT mind readers. No one but you knows what is inside your head at any given time. Peoples needs often go unmet for the sake of just expressing them. When people understand exactly
Kelly B.

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 7

Town Meetings Before leaving Colombia we would hold a town meeting for everyone who had HD or who was at-risk for it. We gave presentations, answered questions, handed out all of the information we had brought on HD and fed everyone. We also passed out clothes that I took down that were donated by a support group of the Hereditary Neurological Disease Centre and also donated by local Catholic school children here in Mesa. Hundreds attended each of our meetings. I had to pay extra for ea
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 6

Jos? Ontoniel Jos? was confined to the “jail” cell in his own home until right after we arrived at his home to visit. When I asked his spouse if she was still using her “jail” she said “no” but when I asked to use the restroom (to see for myself) she refused and said she needed to clean it first. She disappeared for about 10 minutes before returning with her husband all cleaned up and told me it was now okay for me to use the restroom. I could tell fr
Phil Hardt