Name: Brenda Dixon
Where do you call home? Vancouver, BC
Who do you live with? I live alone, with my cat.
What is a typical day for you? It varies- exercise, work online, physiotherapy
How long have you known you are living with FA? 54yrs. I was diagnosed at 10. My parents noticed I had difficulty going down stairs.
Are there others in your family with FA? No.
Describe an adaptation and/or transition you have had to take due to living with FA. My friends watched me go from "drunkenly" walking around, to a walker, then scooter, manual wheelchair, until finally, a power wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? Standing exercises and stretching exercise at home and physiotherapy and I use a Locomat (a robotic machine) at physiotherapy.
Do you have any hobbies or special interests? I’m interested in computer apps programming (Excel).
What is a good trick to make daily life easier? Stay active. If you don’t use it, you lose it.
When FA gets you down, what do you think/do to feel better? There are people worse off than me. Potential treatments may be coming soon and I am hopeful for those.
What is one way living with FA has POSITIVELY affected your life? At events, I go to the head of the line.
What is a favorite motivational quote of yours? "Life is what you make it."
What is the best advice YOU could give to a person who has been newly diagnosed with FA? When the time comes for any mobility aid, get it. It will make your life so much easier and safer. You will be able to go out and do things.
What is the first thing you want to do when a cure/treatment to FA is found? I would like to go to the bathroom using only grab bars. In the past year I have been using a voice controlled lift.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I think that statement is easy to say when a person with FA is young (because they haven’t progressed that much) . But I think FA does have me now. I’m 64 and progressing rapidly. Right now I’m living my life with the hope that treatments gets approved soon and hopefully will slow the progression.
Tell us a little more about yourself... I was born in Montreal, Quebec. At the age of 10, I was diagnosed clinically with FA. My father worked for the airlines and he was transferred to Vancouver BC. I was just starting my FA progression so it was nice to move out west where there is no snow. My parents have both died now and my younger brother has also died (he did not have FA) and I just have another younger brother who lives in Edmonton, Alberta with his family. My parents were very good with my FA, they always let me do things to a point. If it was dangerous for me, then they would say not to. At that time there were not many people FA, so it was not well known and a lot of kids would make fun of the way I walked. I worked at a credit union for 28 years, the last five being a programmer, and that really interested me. I moved out into an apartment when I was 19 and then I moved back for a short time with my parents when I had scoliosis surgery, then I moved out on my own again to a few more places. I go out less and less now because of my FA progression. I do enjoy flying, so after this COVID is over, maybe I can resume that. But I really do have good days and bad days. FARA is doing a wonderful job getting the whole worldwide FA community together, either on Zoom, or in person and they're giving people so much hope, especially the younger ones.