Mary Sheetz: My Life With SCA8

Mary lives in Portland, Oregon. 12 years ago, she was diagnosed with Spinocerebellar Ataxia type 8. However, if we look back to the 1980s, that’s when the process that would lead to her eventual diagnosis seemed to begin. At first, Mary started experiencing food allergies. Just a few years later, she developed prisms in her eyes. Sometime around the year 2000, Mary noticed that her left knee had become stiff. She would often fall when stepping off a curb or going downstairs.

     Mary consulted a Chiropractor…but after trying for several years to follow their advice, and finding little relief, she turned to an Orthopedic surgeon in 2008. The doctor saw something unusual and immediately sent her to see a neurologist. Upon the initial exam, the neurologist diagnosed Mary with Multiple Sclerosis. After doing an MRI and bloodwork, Mary’s diagnosis was changed to SCA8.

     Currently, Mary likes to stay active and attends an exercise program called Rebel Fitness twice a week. It is a program that has mostly been set up for patients who have Parkinson’s Disease but, they will work with anyone that has mobility issues. Through the activity of boxing, they focus on movement and balance. They also offer classes that concentrate on vocal skills. Among these two, are classes that focus on dancing, nutrition, yoga, Thai Chi, and golfing techniques. Mary also enjoyed attending a water aerobics class for a season. She moved into this form of exercise when her loss of balance no longer enabled her to attend the workout class that she had previously been doing. Eventually, she needed to stop attending this class, as well, when the dressing room, walking on the slick deck and no longer feeling comfortable in deep water became issues for her.

     Mary also really appreciates being able to attend an Ataxia Support Group. She feels that a group that she can attend – with people who really understand what she experiences and goes through on a daily basis – is a precious thing!

     Mary has learned to refrain from being so hard on herself. We can quite often make our situation worse, so this thought is ALWAYS a good reminder. We need to practice patience. Not just with ourselves, but with those we come into contact with that act in negative ways – who, more-often-than-not, possess no knowledge concerning Ataxia. If, after educating someone, they still choose to see you as faking to gain attention, or as a hypochondriac, then, as Mary says that’s their problem.

     Mary would like to leave us with one more thought:  we all need to find someone, or someones, to talk to. Having people, such as through a support group or the many Facebook groups, is a very valuable thing!