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Please accept my condolences on the death of your brother. I appreciate the way you are honoring his memory by searching for answers to how he came to get this disease. I found this article about HD from the Mayo Clinic website, http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431. You might also find some articles about this by searching, googlescholar. The articles on googlescholar are not as easy to understand, however, as the Mayo Clinic article.
I have a feeling that you would be a good support for others who are dealing with family members who have HD. I did find a listing of support groups for this disease at this website, http://hdsa.org/about-hdsa/support-groups/ Have you considered attending a support group?
Teresa
Replies to "@sisterlove Please accept my condolences on the death of your brother. I appreciate the way you..."
Dear Dee @sisterlove,
We will certainly keep you in mind if we hear of anyone who is dealing with Huntington's, you have a great deal of experience, but more importantly compassion. How wonderful that your brother had you close by to advocate for him! I'm sure that you miss him.
Please feel free to share with our Caregivers Discussion group. I would like to introduce you to @IndianaScott, who is the volunteer mentor for that group. He lost his wife last year after a prolonged battle with cancer and he will understand your grief and appreciate the support that you gave your brother, as Scott was also a strong advocate and caregiver for his wife. I'm sure if he hears of anyone in his group who is dealing with Huntington's Disease he will certainly bring you into that discussion.
Peace and comfort to you Dee,
Teresa
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Hi Teresa, Thank You for your kind words. I will check the web sites that you suggested. I am still very heartbroken, lost and angry at the horrible end stage of my brothers life. I was a devoted sister and his only advocate and spent countless hours with him every day. His illness began 18 yrs before he passed, so it has been a long and sad journey. I did post a few cries for "help" on the mayo web site, when he was alive, but didn't get any responses. It would have helped greatly to have been able to talk with someone, with this disease, or a caregiver. I surely would be more than happy to offer any help or my experiences with dealing and coping with a loved one with this horrible illness. Again.....Thank You for responding to my post. Dee (Sisterlove)