Name: Tony Henri
Age: 28
Where do you call home? St Georges des Groseillers in France.
Education/Career: Diplômé national du brevet (niveau collège) national diploma of the patent.
Who do you live with? With my darling and my soon to be three year old son
What is a typical day for you? I wake up then tend to Lucas (make him breakfast, wash him, dress him up), do dishes, prepare lunch for Lucas, more dishes, take care of the laundry, clear the table, put Lucas down for a nap…
How long have you known you are living with FA? Summer 2012, August 2012 precisely. My physiotherapist thought I had a strange gait. He advised me to go see a neurologist in Evreux who sent me directly to the Hospital of the Salpetrière in Paris to see Dr. Alexandra Durr.
Are there any others in your family with FA? No one to my knowledge.
What do you like to do to stay active and what type of exercises work for you to stay strong? I liked doing weight training indoors, I used to do six hours a week before, now that the disease has evolved I do not have enough hours of daily help to allow me to resume my old routine. I would like to resume as I really need it. To have the help we need we have to fight for months, it’s exhausting with our disease that we must already tame.
Do you have any hobbies or special interests? Music and bodybuilding.
What is a good trick to make daily life easier? Not to dwell on daily tasks and keep a healthy pace of life; sleep well and get good rest as soon as needed. Engage in physical activity and limit daily excesses (alcohol, tobacco, etc.)
When FA gets you down, what do you think/do to feel better? I would like to listen to music, heavy breathing and stretching, bodybuilding.
What is one way living with FA has POSITIVELY affected your life? Seeing life differently and learning to take the time to think carefully before speaking.
What is a favorite motivational quote of yours “No pain, no gain.”
What piece of advice that someone with FA has given you that encourages and inspires you? Everything is a matter of perspective. -C.D.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Only one thing to keep in mind, think of yourself and then of the others, not the other way around.
What is the first thing you want to do when a cure/treatment to FA is found? Take care of my son, my darling; Strength training more often; And especially providing for the needs of my family.
“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 would like to say I have FA but FA will not only have me, the disease evolves and, for me right now, it is really difficult at the moment.
Tell us a little more about you… I like sports, music and I like to breathe (rest, spend time relaxing) and having family moments without thinking about who will do the housework, the dishes, the laundry or mow the lawn. I like to take care of me and my partner who only has 24 hours to do everything for me.
Interview by
Xhesika Peza