Neuro Note 3: From High School to Nursing Home

   For this neuro note, I wanted to become more familiar with Huntington's Disease (HD). I read an article posted in the Sioux City Journal about Desiree Buettner, a 20 year old who was diagnosed with HD at only 18 years of age and is now living at Careage Hills Rehabilitation and Healthcare facility in Cherokee, Iowa. A little background about Huntington's Diseases -- it is degenerative, neurological disease that causes a breakdown of nerve cells in the brain. It is a disease that is typically inherited (Desiree's mother and grandmother also fell victim to this disease) and has no cure. Symptoms of stiff or awkward walking, increased clumsiness, and changes in speech usually appear between the ages of 30-50, but in 10% of cases, HD affects children and teens. Young people are only expected to live 10-15 years after the onset of symptoms. Once admitted to the skilled nursing facility, Desiree became depressed, as she was by far the youngest patient there. The staff and family members of patients try to make Desiree's experience at the facility as fun as possible. Additionally, because no one knows how much time Desiree has, they recommended that she make a bucket list and are working hard at checking everything off! The staff has become like her family and tries to make it the best home it can be for her.
   With this degenerative disease, it is important to do what you can while you can. I think the bucket list idea was great for Desiree. She has had many "firsts" and experiences that she never thought she would have, and she now really enjoys where she lives. The patient/ client's happiness is so important during this time. My takeaway as a future occupational therapy practitioner is to make this client as comfortable and happy as possible. Make bucket lists. Let the client enjoy life while they can, no matter what age they are!



Reference:

Butz, D. (2018, March 29). From high school to nursing home: 20-year-old learns to cope with fatal disease. Sioux City Journal. https://siouxcityjournal.com/lifestyles/health-med-fit/from-high-  school-to-nursing-home-20-year-old-learns-to-cope-with-fatal-disease/article_06dd5b66-dd55-52ee-864d-c54b7be8d324.html#comments