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FARAFARA Cure FA

Megan McIntyre

MeganMcIntyre1Name: Megan McIntyre

Age: 35

Where do you call home? I live in Southern Ontario, Canada near Hamilton.

Education: I have a Bachelor of Arts Degree in Psychology, from Brock University.

How will FA add to your future? A friend told me to write what I know, so I began to compose my memoir. I’m now in the process of writing a children’s book about my life and experiences.

What is your relationship status? I am currently single and do not have children. I live with my parents.

What's a typical day for you? I sleep until late morning, eat brunch, have a shower, do some writing, shopping or get together with a friend, have dinner and watch some of my favourite television shows.

How long have you known you are living with FA? I have known that I have FA since I was fourteen years old. A few months before I was diagnosed, the blood test for FA became available to doctors. I had a slightly awkward gait, scoliosis and swayed if I shut my eyes, so my neurologist did a blood test to check for FA.

Are there any others with FA in your family? My two older brothers do not have FA. There isn’t any sign of the neurological symptoms associated with FA in my extended family.

Describe your transition from walking to walker/wheelchair. In my early twenties, I reluctantly transitioned to using a wheelchair. I soon realized that a wheelchair was my key to the outside world. In my late twenties, my parents and I moved from a four level side-split, into a one level unit in a high-rise condominium. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I do leg stretches to keep my legs from cramping.

Do you have any hobbies or special interests? I enjoy spending time with my nieces and nephews. I love to write about my life and fictional tales. I like to hang out with my friends and simply chat or catch a movie.

What is a good trick to make daily life easier? To avoid getting dizzy while being pushed in my wheelchair, I find a spot to focus on in the distance. I follow lights that are in a row or the grout of a tile floor. If the tile is set on an angle, I abort the mission. When I was on my feet, I used my purse and shopping bags to balance myself.

When FA gets you down, what do you think/do to feel better? My family and close friends bring me great pleasure when I am having a rough day. Although FA isn’t something I wished to have, I don’t let a disability stop me from doing the activities I love to do. I distract myself from my thoughts and am grateful for the abilities I do have. Life is what you make of it, so always reach for the stars.

MeganMcIntyre2What is one way living with FA has POSITIVELY affected your life? I have been treated by many doctors and medical staff and without me having FA, I wouldn’t know them. I have always been Meg to them and never viewed as a number. Some of the medical staff have grown into some of my best friends.

What is a favorite motivational quote of yours? “You just can’t beat the person who never gives up!” – Babe Ruth

I find this quote motivating because I’m reminded to keep trying and never lose hope. Babe Ruth was a baseball player and no pro ever takes the field not thinking about going to the World Series. When I was a little kid, I played softball. Now I am a huge Toronto Blue Jays fan and never lose optimism that they will win the championship for a third time!

What is piece of advice that someone with FA has given you that encourages and inspires you? I have never met another person with FA. When I was younger, I didn’t want to meet someone who was doing better than me because I’d feel badly about myself. I didn’t want to see someone who was worse off than me because I would feel like I was headed down a scary path. I know now that every FA patient doesn’t necessarily follow the same itinerary.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? My advice to a newly diagnosed FA patient would be to not look up statistics related to your disease. Your doctor will give you current information that you need to know. Consider the source of any information you do read. I would also encourage patients to not let FA takeover your thoughts. Laughter can get you through some tough times and help you maintain a positive attitude. Remember that your happiness is dependent on you and only you. Don’t let FA control your level of cheer!

What is the first thing you want to do when a cure/treatment to FA is found? When a cure or treatment for FA is found I want to run barefoot along a beach shoreline with my flip flops in hand. I’d prefer a warm climate, but any beach will do!

"I have FA but FA doesn't have me." What does this statement mean to you? I happen to have FA, but I will never let it dictate who I am as a person! How do you live your life in the face of adversity? I make the most of the abilities I do possess. I knew that a typical forty hour work week would not be possible for me. I’m a published author, which has allowed me to have a flexible schedule.

Tell us a little more about you…I wrote a non-fiction book entitled Suck It Up Sunshine Living Through Chronic Disease. My book is available through Chapters Indigo and Amazon within Canada and Amazon in the United States.

ChristinHaun mtc sig 16


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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