My name is Linda, and I have been dealing with SCA3 for 17 years. I worked in the medical field for over 20 years before retiring in 2015. The progressive nature of Ataxia made it too difficult to continue working. It certainly presents challenges daily, but I try to maintain a positive attitude and count my many blessings.
First and foremost, my faith in God is what fuels my fire. Although my Ataxia has progressed over the years, I have learned to be content and to make the best of whatever situation I am in and trust totally in God for guidance.
In 2003, I received a diagnosis of Spinocerebellar Ataxia type 3. At the time, with the exception of occasionally feeling off balance, I was asymptomatic. By then, I knew my mother’s medical history which made it clear that I had inherited SCA3 from her side of the family. In our family, I had an older sister and two brothers; I am the youngest sibling. My oldest brother passed away early from other causes in 1987.
Ataxia was first noted in my mother. After years of trying to seek out a medical reason for her lack of balance and numerous falls, she was finally diagnosed with SCA3 in her late 40’s. As her condition progressed, my dad and I cared for her at home. Mom passed away in 2008 at the age of 74.
My sister was diagnosed with Ataxia around 2001. She eventually relocated and moved in with dad. Dad and I would help care for her as much as we could. In 2014, my brother, who was also diagnosed with Ataxia, moved in with dad and my sister. I lived close by and at the time, the condition of my health was still good, so I was able to help out.
As my sister’s condition progressed and severely limited her functional abilities, she moved into an assisted living facility. After a couple of years, she would move to a full-skilled nursing home. It was in the local area, so I was able to visit her often. She passed away in 2018 due to aspiration pneumonia, a common complication of Ataxia. She was the mother of two sons, and grandmother of three grandchildren, who miss her dearly. Shortly, thereafter, my father’s health deteriorated, and he also passed away that same year, just 8 months following my sister.
I currently live with my husband, and my brother. We have come to enjoy living together and contributing in every way to make the best of our living arrangement. My husband and I have two adult children with families, who live nearby. Fortunately, they are all very supportive and help out whenever needed.
I am a member of two awesome Ataxia support groups, which I found through the National Ataxia Foundation website. The NAF website keeps me up to date with the latest Ataxia research and clinical trials as well as a host of other helpful information. It’s good to be able to share tips, activities, and news with others who have similar conditions.
Several of my relatives are also struggling with SCA3. It is my prayer that eventually an effective treatment or cure will be found, if not in my lifetime, in the lifetime of my children or grandchildren.