Promoting Excellence : Huntington's Disease Recommendations to the Field : Case Study #1: Jack

Jack led a full and vibrant life. He earned his Ph.D. and two Master's Degrees at a major university and, as a professor, enjoyed influencing the lives of young and old alike with his vibrant, upbeat personality.

Jack's life changed dramatically after his HD diagnosis. Jack felt the loss keenly when he could no longer safely drive his car to work every day or manage the complicated demands of his position. With his autonomy and independence dramatically affected, he fell into a deep depression. With the help of an understanding wife, as well as a qualified and sensitive occupational therapist, Jack learned to utilize public transportation. This adaptation allowed him to maintain his connection with co-workers and continue working in a newly established office arranged by his department for his use.

Returning home from work one day, Jack began to cross the street, but with his slowed gait and poor judgment he did not reach the other side before the light changed, and he was hit by an oncoming car. Although his injuries were minor, he and his family were again faced with changes in his life and lifestyle due to HD.

Jack eventually agreed to attend a local day care center, although he maintained that he did not need anyone watching over him, while his wife worked. His outgoing personality and positive attitude quickly endeared him to the staff and residents, however, and Jack soon became a staff assistant rather than a resident. He helps others with activities and chats with residents and staff. Encouraging and
supporting others allows him to maintain his dignity and independence to the
greatest extent possible.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.

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