Simple tasks such as talking on the phone or booking a hotel room prove difficult for Brenda Dixon. But this isnt because she suffers from ataxia, a degenerative neurological genetic disorder. Its because of the judgment cast by those on the other line.
People dont know what it is and they often assume Im drunk or something, said the 55-year-old, who uses a motorized wheelchair to get around. I love it when people ask if theres something wrong. I would prefer it if they didnt just come to their own conclusions.
To lessen the frequency of these occurrences, Dixon is out to raise awareness about the disorder. As president of the western branch of the Canadian Association of Familial Ataxias (CAFA), Dixon organizes fundraising initiatives and attends annual conferences with researchers from around the world.
This Saturday marks the second annual Walk to Fight Familial Ataxias at Garry Point Park in Richmond. International Ataxia Awareness Day then lands on the following Tuesday, Sept. 25.
I hope the money goes towards finding a treatment, she said. I want them to find out how to make it stop. And then once thats figured out, they can work on bringing you back to the way you were before. But the first goal is to stop ataxia from progressing.
Different types of the disorder can appear in children, most commonly as Friedreichs ataxia, which is what Dixon has, and in adults, which is spino-cerebellar ataxia. It can affect walking, coordination, speech, and fine motor controls, causing the affected person to eventually need a wheelchair.
Although research about the disorder has advanced considerably, there still exists a great regional divide across the country.
The first CAFA office was established in Montreal. Consequently, knowledge about ataxia still remains more prominent east of Manitoba.
I was in Toronto in August and everyone knew what it was back east, said Dixon. Im trying to raise more awareness here, but one person cant do it all.
Compared to south of the border, however, Canada as a whole pales. The National Ataxia Foundation holds an annual three-day conference in the states, which Dixon has attended every year since 1997. This Oct. 20, Canada hosts its first conference in London, Ontario.
Its a big deal, said Dixon. Itll be a lot more accessible to Canadians. I love going to the conferences because everyone there is the same. Nobody judges you, or wonders why you speak funny, or why your hands funny.
When Dixon was nine years old, her parents started noticing she was having difficulty with balance and going down stairs. After a hospital stay, she was diagnosed with Friedreichs ataxia at the age of 10. The disorder is hereditary as both her parent had the recessive gene, however, her two younger brothers were unaffected.
A year later, due to her fathers job, her family moved from their Montreal home to Richmond. It wasnt until high school, that people started questioning Dixon as her speech and movements began to deteriorate, making an already awkward stage worse. Fellow teenagers would taunt her, while teachers were at a loss of what to do.
Through the negative experiences, Dixon found some relief in a perceptive gym teacher and a balance beam. Recognizing she was struggling, but not wanting to single her out, the teacher lowered the beam.
I was so relieved when I walked into gym class and saw the lowered beam, said Dixon. Even though she didnt know anything about ataxia, she saw that I was struggling.
From high school, she enjoyed a successful career in finances as a bank programmer. Since 2004, Dixon has been on long-term disability and continues to actively raise awareness for ataxia.
She has been able to keep her own apartment with caregivers visiting her in the mornings and evenings.
Last year, the inaugural ataxia walk at Garry Point Park raised close to $3,000 with 45 participants. Dixon expects more attendees this year and cites the park as a great place to attract and educate passersby.
Mayor Malcolm Brodie opens the walk and the Richmond Fire Department will also join. Refreshments and prizes will be served.
For more information, or to register, visit www.bcataxiawalk.com or west.lacaf.org.
