Living with ataxia and sharing awareness

Armstrong woman lives with a rare disease that has no known cure

In just a few years, Josee Bull has gone from a life filled with daily activity to one where a trip to the grocery store is a major undertaking.

Now living with degenerative cerebellar ataxia, Bull has a disease she had never heard of until a few years ago.

“There is not a sure diagnosis because the only way for a definite diagnosis is through autopsy,” said Bull, 52. “I was diagnosed three years ago with ataxia, which has  no known cure or treatment.”

According to the National Ataxia Foundation, the word “ataxia” comes from the Greek word, “a taxis” meaning “without order.” People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech and eye movements.

“My movement, balance and coordination were all off for about a year before I went to see my doctor. I finally got to see a neurologist when I was visiting Alberta and he told me I had ataxia, diagnosed through an MRI.”

Before being diagnosed with this rare disease, Bull owned and operated the UPS store in downtown Vernon for five years. After she sold the store, she and her partner, Sean, ran a resort at the Douglas Lake Ranch before moving to Armstrong a year ago.

“Working at the resort we had a lot of guests every day and we lived there and we miss that part,” she said. “I used to work out every day. I was very active, I was a runner, also a motorcycle enthusiast all my life since I was 18. But I was noticing my balance was off, and I didn’t think it was anything too serious at first.

“They say the causes are probably environmental or genetic. They did genetic testing but I don’t have a genetic cause.”

The form of ataxia Bull has means that the cerebellum — the bottom portion of the brain — is affected. The affected area is shrinking and will continue to shrink.

“The cerebellum atrophy causes the ataxia. Everybody has ataxia; when you get older, you get ataxia because of brain degeneration. But for me, because it’s happening at an early age, it’s faster and earlier than everybody else.

“I will die from choking because I have a hard time swallowing and breathing, but this affects everybody differently.

“For me it’s speech and urinary — all small things you don’t think about until you are having difficulty with them.”

Originally from Montreal, Bull has an adult daughter and two grandchildren and said Sean, her partner of more than a decade, is an enormous support to her. But she added that the disease has taken a toll on their relationship because it’s affected her ability to enjoy the activities she used to take for granted, from simple things like going to the grocery store to dinner at a friend’s house.

“If Sean goes to Askew’s, I might go for the ride, but it’s been hard on our relationship,” she said. “It has got worse over the years. The only time I get out is to go do the groceries or something.

“Aside from that, I do exercises from the time I wake up: breathing and speech exercises and small motor exercises for my hands; I have a putty ball for my hands that I squeeze; I do balance exercises.

“I don’t know if it helps slow the progress, but it helps me to deal with this. If I didn’t do as much movement, I would watch TV all day and I don’t want to watch TV during the day.”

Bull now uses a walker to get around but said a wheelchair is in her future.

“Before, I used to be able to walk down the street but I can’t do it anymore. I started in September at a geriatric day care in Enderby and that helps, but it’s all older people.

“My daughter is in Calgary and has her family, my sister and my brother are in Montreal, so it’s difficult.”

While Bull’s boxer, Ty, keeps her company, Bull finds support through the social media groups she belongs to, all to do with ataxia.

Bull is hoping to spend Christmas in Calgary with her daughter and grandchildren, but it may not be possible to make the long journey.

“My daughter wants me to go for Christmas. I don’t know if I can but we have the mini van that has a washroom inside so it might be possible.

“The grandchildren are only seven and nine and they know that I am ill — they ride on my walker and they get me stuff.

“But my daughter says ‘that’s not my mother,’ because she knows me as a very strong person.”

Bull is not looking for sympathy, rather what she hopes to see is awareness of the disease that affects 25,000 people in Canada. But its rarity means there are no support groups for her in the North Okanagan.

While there is much awareness around diseases such as Parkinson’s and Alzheimer’s, Bull said little is known about ataxia.

“Mostly what I would like is a lot of awareness for the disease and for the National Ataxia Foundation.

“But it would help if I knew more people with it.”

For more information on ataxia, please see www.ataxia.org

 

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