Huntington's Disease Society of America
We adopted our son, Lacy, when he was three; he is now 34 years old. All of his life, Lacy has struggled to overcome challenges. He is autistic and developmentally delayed. For the past 15 years, Lacy has lived independently in a group home.
Because of a family history of HD, we knew to ask for a referral to a neurologist for testing when we noticed marked behavior changes. Sadly, our fears were confirmed when he was diagnosed In July of 2011. Since he is developmentally delayed, Lacy’s ability to understand what is happening to him is very limited. This makes our journey with HD even more heartbreaking. Fortunately, we have the expertise of a doctor very familiar with Huntington’s disease, and have connected with other families through an HD support group. The HDSA website and Facebook page have been rich resources. We requested and received a copy of The Physician’s Guide for ourselves and Lacy’s family doctor. The book has helped us understand what we need to do to advocate for Lacy. We, and the staff at Lacy’s group home, have listened to many of the webinars in the Caregivers Corner. We’re so thankful for HDSA and the support we have received through the HD Community.
For Lacy, paranoia and delusional thinking have been the most problematic symptoms, prompting an extended hospitalization. The group home where our son lives has been incredibly supportive during the last year and a half. They have been willing to make drastic changes in Lacy’s living arrangements. Together we have instituted a set schedule, with the same caregivers for the same shifts, and Lacy now has 24 hour one-on-one staffing. This has made him much happier overall, and lessens the severity of his paranoia. His behavior is so unpredictable that he can no longer take trips out to eat or shopping with other members of his community. He no longer wishes to leave his apartment for any reason, so we take holidays to him, sharing precious moments with Lacy and his caregivers.
Because he has begun to have marked mobility issues, we moved Lacy into a one bedroom handicapped accessible apartment. He is receiving more help with personal care needs, shopping, and laundry.
Our family is so blessed to have the support we do have for our son. We especially thankful for HDSA and the invaluable information we have received.