Name: Tricia Herman-MaulAge: 43
Where do you call home? Western New York
Education: Administrative Assistant, A. S., Zoology, B. S., Registered Tax Preparer- work remotely during the tax season
Who do you live with? I live with my husband of 19 years, Christopher and 3 teenage children Amelia, Calvin, and Justin. We have two dogs, a cat, sheep, rabbits, and chickens on our hobby farm.
What's a typical day for you? On a typical day, I wake up early and transport my kids to school, then work for five hours and pick my kids up from school. Evenings are dinner, homework, and farm chores to maintain our hobby farm. Of course, there are sports and extracurricular activities, so my days vary a lot.
How long have you known you are living with FA I have known I had FA since 1997 when my sister was diagnosed. I received confirmation of FA in 2009 with genetic testing at the age of 29.
Are there any others with FA in your family: My sister, Tara
Describe your transition from walking to walker/wheelchair. In my early 30's, I would hold onto my husband or children for assistance. As FA progressed, I began using a walker, then purchased a scooter to use for longer distances. I have been using walkers for six years and am fighting to continue walking.What do you like to do to stay active and what type of exercises work for you to stay strong? My family and farm keep me active. I also have an indoor and outdoor recumbent bike, inversion table, do yoga, stretch daily, and get regular chiropractic adjustments.
Do you have any hobbies or special interests: I enjoy gardening, nature, sunsets, and bonfires. I also enjoy baking, cooking, and playing games with my family. Contributing to FA research and helping newly diagnosed families cope keep me hopeful.
What is a good trick to make daily life easier: Keeping a schedule and learning to rest when my body requires it. To humble myself and ask for help because communication is crucial with those around us.
When FA gets you down, what do you think/do to feel better: Life with FA and three teenagers can be very overwhelming. I love to be outside and taking in the sights and sounds of nature. It also helps me to workout, do yoga, and be around animals.
What is one way living with FA has POSITIVELY affected your life: FA has made me live in the moment. I try to appreciate every opportunity life gives me and live with a ‘how can I’ mindset instead of ‘I can’t’.
What is a favorite motivational quote of yours: “What have you done today to make you feel proud?” If I can’t answer this, my day is not done.
What piece of advice that someone with FA has given you that encourages and inspires you? Kyle Bryant said something on a podcast that has stuck with me, “It’s not about how you get from point A to point B, it’s that you get there.” During this time, I was resistant to using a walker, and he made me realize how much life I could miss due to my stubbornness and mental hurdles.
What is the best advice YOU could give to a person who has been newly diagnosed with FA: To be your own advocate. You are the expert on how you feel, and you have the power to speak up!What is the first thing you want to do when a cure/treatment for FA is found? Walk down the beach holding my husband’s hand.
"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? Through the years, I have learned to use FA as a tool. I may not have full use of my body, but I make up for it with my mind and voice. I don’t let FA be an excuse or hinder me, I have actually learned to have a stronger voice and determination because of it.
Tell us a little more about you: I was diagnosed 14 years ago and have actively participated in four drug trials, three biomarker studies and many surveys and FA events. I feel like it’s my duty to participate because I was given this rare opportunity to make a difference.
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