HDSA submission

Here's my submission for the Huntington's Disease Society of America website.  

We adopted our son, Lacy, when he was three; he is now 33 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 realized when he was diagnosed last July.

Because 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 a 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 navigate the health care maze.   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 have received through the HD Community.

For Lacy, paranoia and delusional thinking have been the most problematic symptoms, prompting an extended hospitalization this last fall.  The group home where our son lives has been incredibly supportive during the last year.  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 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.  We take Lacy home with us as often as we can for short visits and for family gatherings.

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.

I began writing a blog about our journey.   It is my hope that those that read it will learn something about HD and the impact it has on the lives of everyone in the family and community.


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