About Lisa Hetherington, 2013 Canadian Ataxia Conference Homage Recipient:

Lisa Hetherington is one of the 2013 Canadian Ataxia Conference Homage Recipents. A documentary video about her inspiring life and battles with Ataxia will be played on the Wolf Performance Hall's movie screen as a part of the "Limitless with Limitations" show begining at 5pm on Saturday October 12th 2013.

Lisa Hetherington has an undiagnosed type of Spinocerebellar ataxia (SCA) and epilepsy. She is the Mother of 2 beautiful daughters, ages 19 and 21, who are both in college and thriving. Lisa and her husband Gerry will be celebrating their 24th wedding anniversary in December of 2013.

"I had known for a long time that there was something wrong. I have always had poor balance, was uncoordinated and had double vision. Most of these symptoms really started to make their presence known when I was in my late teens. There have been misdiagnoses of MS and Dandy walker’s Syndrome in our family. Finally at some point, my father received a diagnosis of Spinocerebellar ataxia (SCA). My father’s father (and all of my dad’s paternal uncles) had/have SCA as well. One of my father’s cousins has SCA and then there’s me. As far as we know, I am the only one in my generation that has it and my daughters seem to be fine. Praise God!"

Lisa wasn't officially diagnosed with SCA until the year 2000. Upon diagnosis she was told the she would probably be in a wheelchair in 5 years, that prediction by the neuro-geneticist did not come to fruition thankfully.

She began walking with a cane in 2001, at first she had a difficult time getting used to having to use a cane. The cane was emotionally uncomfortable to accept.

" I didn't want to be 35 and needing a cane!! I got over that hurdle when I found myself having to explain to my best friend`s young son why I was using a cane. The words that came out were, “It helps me walk, just like my glasses help me see”. He just shrugged his shoulders and said “Oh”. That made perfect sense to him and his reaction helped ME accept the cane in the same way as this young boy did."

In 2007 Lisa slipped and fell on black ice, the fall broke her right leg. As a result of the fall she required surgery and hardware implantation. The years following the fall were very hard on Lisa. The Ataxia progressed and Lisa became frightened that she would fall terribly again, she became clinically depressed as a result losing of hope. However in 2010 she was referred an Occupational Therapist (OT) that changed her life forever.

The OT assessed Lisa and recommended a number of things that would restore a quality of life for Lisa, including a walker. The walker gave Lisa her mobility and freedom back. She became inspired to live again and defy the disease.

With the walker, Lisa began to take small to lengthy walks outside for exercise. These small to lengthy walks soon became daily long-distance walks of 5kms. In November of 2011 Lisa entered her first 5K race with a friend and daughter. She finished with a time of 51m37s, Lisa was thrilled with her result and focused on tackling more goals in the future.

In the winter months Lisa is unable to walk outdoors. The snow and ice present an unsafe environment for her and her walker. Not being able to walk outdoors during the frigid season doesn't halter Lisa's spirit in the slightest. She has adapted to the annual winter months concentrating on indoor physiotherapy and exercises. She pushes herself to achieve as many goals with indoor excises as she does with summer's outdoor walks.

Ataxia has also been rough on Lisa's family as they see her symptoms progress. Her SCA deterioration presents adjustments for everyone, however the Hetheringtons have tackled these adjustments as a united loving family. The support Lisa has had from her husband, daughters, family, and friends have be amazing.

Gerry has heroically been there for his wife throughout all the challenges Ataxia has presented to her. He does whatever he can to make sure that Lisa is safe and supported. He helps her to overcome the limitations that arise from SCA and with daily activities. Living with a deteriorating disability also presents financial challenges. These challenges have been difficult but both Lisa and Gerry solve the issues of assistive devices and accessibility costs together as a team.

" I believe in “use it or lose it” so I am trying to be as active as I can. My independence can lead me to being prideful and not asking for help when I should, though. I’m working on finding the balance between doing as much as I can for myself and gratefully accepting the help that is out there, be it friends or family or community/government programs. I have my good days and bad days, just like everyone else. My days just involve SCA and epilepsy, that’s all."