Kim, 41 years old who suffers from Friedreich’s Ataxia (FA). Kim was diagnosed at the age of 25 years old. She began showing symptoms of her disease in high school. On several occasions people thought she was drunk because of ability to walk. Kim was embarrassed and did not want anyone to know so she suffered in silence for a very long time. Since Friedreich’s Ataxia was hard to diagnose prior to 1996, Kim did not know what was causing her coordination to decline for a very long time. Kim was seen by 4 neurologists before she was diagnosed. By the time Kim turn 26, she had begun to use a walker and at the age of 31 years old, Kim had to start using a wheelchair. Shortly after Kim began using a wheelchair, she had to also give up driving. As the progression of the FA, Kim has had to give up a lot of independence. There are a lot of things we take for granted and most of these things we really never think about. We do not think the height of toilet is a big deal. For a disa bled person, one or two inches in the height of a toilet can make a difference in whether someone will need assistance going to the toilet or not. The bathroom for a disabled person is such an important part of their life. Handrail, adaptable toilet facilities, roll in shower, roll under vanities, reachable light switches and water facets that can be turned on and off easily and reachable. Kim progressed to the point that she could no longer prepare meals for her family. Wow!!!! How does life go on if you cannot always care for yourself and cook for your family? If you could not do these things, what would you do? Kim has worked through her challenges by attending Ataxia Support Group Meetings, National Annual Ataxia Conferences and staying in contact with the Wishes 4 Me Foundation. Through the Support Group meetings, Kim became aware of the Wishes 4 Me Foundation. By having these contacts, Kim has become aware of programs available for her to assist with her independence. The pro grams do not solve all issues. The programs are also time consuming and sometimes exhausting to get started and to manage.
Through the Wishes 4 Me Foundation, Kim found out about the Medicaid Waiver programs offered in the State of Georgia. The foundation assisted Kim in applying for the waiver program which best fits Kim’s needs. The foundation assisted in providing support as much as possible which gave Kim hope through a divorce and other life changing events. Kim, also, has a sister with the same disease. Kim’s sister has further progressed with FA than Kim. Kim has had to watch her sister be placed in a nursing home because of the many physical issues. Kim states, “The Wishes 4 Me Foundation has been committed to assist me in becoming more independent and assisted in finding solutions to keep me as independent as possible. I do not want to live in a nursing home. I want to live in the community and around my family and friends which I love. I want to stay in my home as long as I possible can.”