A Closer Look at Huntington’s Disease

After meeting Occupational Therapists and staff from the Huntington’s Disease Society of America (HDSA) for the past two years at the AOTA conference, Abram’s Nation was happy to be able to attend the HDSA convention this month.  As with attending any event for the first time, I was curious to know more about the disease, how are company could help the families and what the reception would be to our offerings at the convention.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. Symptoms primarily appear as an adult and include:

• Personality changes, mood swings & depression
• Slurred speech, difficulty in swallowing & significant weight loss
• Forgetfulness & impaired judgment
• Unsteady gait & involuntary movements (chorea)

Because chorea and impaired judgement can make individuals with HD a fall risk and cause hospitalization in some instances, caregivers are concerned with night time routines and maintaining a safe environment. One family at the conference had these concerns while staying in the hotel. Their loved one, even laying on the floor, moved enough that they were worried he would get hurt on the furniture or manage to get out of the room while the other family members enjoyed some free time. We were happy to be able to assist this family by loaning The Safety Sleeper we had with us.  When we informed the family, the relief and gratitude on their faces made us more determined to find a way to help this community by finding funding sources and getting The Safety Sleeper in their homes!

After one night of using the bed, the family we assisted reached out to us with the following feedback:

“This has been a lifesaver!! We went to the Gala and my husband couldn’t even walk at this point so I felt comfortable leaving him (in The Safety Sleeper). He really likes it. We are at the Queen Mary and he wanted to get into it and go to bed. He said he feels safe in it.”

Needless to say, I was overwhelmed by this community.  The dedication of the HDSA staff and the social workers in attendance; the care and support of the families; the positive and hopeful faces who are participating in the research… all of these faces who we met this past weekend inspire us to continue to find ways we can solve the issues of families with various disabilities and needs.

We learned that this unique group of individuals value hope and family.  Without the support of family, social workers, HDSA and the centers of excellence across the country; the struggles they face would seem insurmountable.  Abram’s Nation looks forward to partnering with HDSA to find ways we can help those facing HD maintain hope and provide them with products that maintain their quality of life.

If you are interested in learning more or have questions about Huntington’s Disease,  go to their website: http://hdsa.org/what-is-hd/