Fifteen year old Rylee is her mother's caregiver. She wrote this remarkable poem and allowed us to post it here. I think it's wonderful - Marsha
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.
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.
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
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
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