Name: Matthew Jordan Penman
Age: 35
Where do you call home? Calgary, Alberta. Canada.
Education degree(s): I have a diploma in Professional Counseling, Certificate in Addiction Work and I am currently working on my Masters in Counseling.
Who do you live with? I am living with my wife, my father, who lives with us, and our fur babies, Fergus (Husky/German Shepherd), and Charli (Purebred Boxer).
What’s a typical day for you? Currently, I am working in a harm reduction facility for seniors and working on my portfolio for my RPL to get into a master’s program. We are trying to buy a house right now, and it’s our first, so it’s very time-consuming.
How long have you known you are living with FA? 19 years.
Are there any others with FA in your family? No, everyone got tested.
Describe your transition from walking to walker/wheelchair. I am fulltime in a wheelchair now for about eight years. When diagnosed at 19, I went from walking to a cane within a year, then a cane to a walker, then I broke my hip and was not able to walk since.
What do you like to do to stay active and what type of exercises work for you to stay strong? I am not very good at this, but I do work fulltime jobs and stay active that way.
Do you have any hobbies or special interests? I love spending time with family and friends, play XBOX One, and cook BBQ/smoke meats.
What is a good trick to make daily life easier? Never give up, I have too much to lose.
When FA gets you down, what do you think/do to feel better? I think about my wife and family and our future. I pray, and I get counseling to keep me going.
What is one way living with FA has POSITIVELY affected your life? It saved my life. I was doing drugs, drinking, and was extremely depressed and suicidal, living on the streets. I am now almost 12 years sober.
What is a piece of advice that someone with FA has given you that encourages and inspires you? You have to take one day at a time, hour by hour.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do not be defined by which you can’t control.
What is the first thing you want to do when a cure/treatment to FA is found? Run, walk, go to the bathroom without being scared to fall. Ride my bike, play sports, mow the lawn, shovel the snow SO MANY THINGS!
“I have FA, but FA doesn’t have me.” What does this statement mean to you? I am a person, not a disability. I fight every day and will until my time is up.
Tell us a little more about you… I live to love and serve!
Interview by
Christin Haun