I Am A Rose %CRY% I'm 51 years old, and five years ago I was diagnosed as being in the early stages of Huntington's Disease. This was not an easy time for me. I was dealing with both the practical loss of not being able to do everything I have always been able to do, but also dealing with emotional grief as well, because I was going through a true grieving experience, grieving the loss of me. It was a scary time as well, feeling that the future was scary. My grief was very real, as it should h
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We signed up to be HDSA’s advocates a few years ago. We sent in our letters to elected officials some of the time when we would receive our HDSA advocacy alert emails. We recruited friends and family to contact their legislators regarding GINA (Genetic Nondiscrimination Act) and were delighted when it finally passed. When the HDSA advocacy team made H.R. 678, the Huntington’s Disease Parity of Act of 2009 a priority last year (original name, but H.R. 6259 in 110th Congress), w
written April 1998 I had grown up with the knowledge that Huntington’s Disease ran in my Father’s family. It was never a secret. My parents divorced when I was three. I did not see my Father again until I was nineteen. I was raised by my Mother and new Dad. Thousands of miles away from my Father, two older sisters, and the effects of Huntington’s Disease. The word held little meaning in my life until recently. When I was a child I was told HD was something I would neve
There are many things in life that happen over which we have absolutely no control. Huntington's Disease is a very good example of that. None of us would ever choose this path which life has sprung on us. One of the lessons that I have learned in this life time is that a little bit of faith can go a long way. We all have faith in different things and to varing degrees. The opposite of faith is worrying about all the things that have or could go wrong. A certain amount of worry is a healthy t
This tribute to my best friend Lorna is way overdue. She is one of the kindest, most amazing people I have ever met. To know Lorna is to love Lorna; one just can not help it. I first met Lorna at the BC Lions Camp Squamish at a Huntington's camp years ago. We were instant friends and as we shared our hearts and souls with each other, we discovered we had matching baggage when it came to our past experiences. %TR% The fact Lorna also has HD gave us an amazing inner understanding of living wit
%BL%Over the last seven years I have had the privilege of assisting hundreds of person’s with Huntington’s Disease (Phds) get the Social Security Disability (SSD) and Long-Term Disability (LTD) benefits they deserved after being initially denied; helping those who were “wrongfully” arrested, accused or crimes, and even kicked out of grade school because of Huntington’s Disease (HD) and Juvenile Huntington’s Disease (JHD); and helping family members understand