Gwen Walter is a real doer: she has always been very active, doing sports like aerobic dancing, ballet, and even acrobatics. Gwen started having balance problems in her 50’s and was diagnosed with CANVAS in her 70’s.
I grew up in southern Indiana. I was always active and studied
ballet, tap, and acrobatics. I continued taking aerobic dancing, yoga,
Pilates, Zumba, karate, swimming, and later senior center exercise
I began noticing that I was losing my balance, stumbling, and falling
occasionally when I was in my 50’s. I broke my foot for the first time while dog walking. I subsequently had two additional fractures in
I started signing up for ‘fear of falling’ classes. I mentioned these
symptoms to my PCP, and she tested my balance and reflexes, then
referred me to a neurologist. The neurologist told my doctor that I
just stood up too fast and needed to slow down. My PCP still felt
something was wrong and ordered an MRI which was inconclusive.
Eventually, I scheduled an appointment with a neurologist at the
University of Michigan Balance Clinic. I had an MRI, 42 blood tests,
and then an EMG.
In 2016 the neurologist diagnosed me with CANVAS (cerebellar
ataxia with neuropathy and vestibular areflexia syndrome) and said
he didn’t need to see me again since there was no cure and no
treatments. I asked how many CANVAS patients he had treated, and
he said, “one.” I didn’t think to ask if I was the one. I mentioned that
I had been reading about the syndrome, and the life expectancy was
10 to 14 years. He said that might be, but I was fairly healthy, the
condition was progressing slowly, and that, “In ten years you will be
80 anyway.” His resident and I exchanged glances, and I saw him
periodically until he left the U of M. He referred me to Dr. Peter
Todd, another neurologist.
Dr. Todd has stayed up to date with the latest CANVAS research and
has provided excellent care. Each visit involves a consultation with a
physical therapist, a social worker, and a speech therapist, as well as
a personal review of my symptoms, my progress, and suggested
steps for the future. He had the University of Chicago run genetic
tests and I am positive for RFC1.
Over the past five years, I’ve taken balance classes, completed
several physical therapy sessions, practiced balance exercises at
home, and participated in virtual exercise classes. I also ride a
stationary bike daily.
As my balance worsened, I began using a cane and now I use an
Upwalker Lite when I need to walk distances. I make a conscious
effort to be careful when moving, but I have repeated falls. Using
stairs is now “thrilling.” There is not a bright future for Ataxians.
Another problem I’ve had for over 20 years is a chronic cough. I’ve
been treated for allergies, asthma, and even had surgery for reflux.
Nothing ever helped. Recent research in the United Kingdom has
discovered that a chronic cough is one of the first symptoms of
I think I can sum up my feelings on Ataxia as ‘loss’. We lose our
balance and ability to walk, our fluidity, fine motor control, and our
ability to drive. Later ataxia often leads to visual difficulties and
interferes with speech and communication. It is exhausting just
trying to move.
I was always a doer, and now I must rely on my spouse for many
duties, chores, and activities. I feel like a burden and an
embarrassment to my husband.
I can still count my blessings. It just doesn’t take as long! Actually,
the only thing we can control is our attitude. Support from our HFA group is invaluable as we work through our fear, anger, and
Thank you for sharing your story Gwen and we hope to see you soon again during a support group meeting!
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