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FARAFARA Cure FA

Alex Merriam

AlexMerriam1Name: Alex Merriam

Age: 41

Where do you call home? Born and raised in the San Joaquin Valley, Central California.

Education (degree(s): Bachelors of Arts in criminal justice in 1999, and a Juris Doctorate in 2004.

How does FA affect your career? So far, FA has had no effect on my career goals other than to make me more driven to success. I am the managing attorney of the local law office of a statewide law firm.

What is your relationship status? I married my high school sweetheart. We met when we were both 17 years old. We will celebrate our 20th anniversary in June. Do you have children? Yes, I have three amazing children ages 6, 8, and 10.

What's a typical day for you? I am a typical attorney who some may call a workaholic. I get up at about 5 AM so I can be to work by 6:30 AM, and then I leave work 12 hours later at approximately 6:30 PM. I certainly enjoy my work or I would not spend so much of my time doing it. The law is an excellent profession for anyone living with FA. I have been able to complete and, in fact excel in my position as an attorney. Since this is a profession of the mind and not the body, the playing field has been leveled.

How long have you known you are living with FA? I was diagnosed by DNA test when I was 24 years old. Therefore, I have been living with FA for about 16 years. I did not show any symptoms until I was 22 years old in law school, when I first started noticing that I had to concentrate in order to walk straight down a hallway or walk on a sidewalk curb. It was so slight that I thought it was all in my head. I then started feeling dizzy and off balance so I thought it was an inner ear problem. I went to many doctors and had many different tests performed. I finally visited a neurologist in Loma Linda, CA who knew right away that I had some sort of ataxia. He then ordered the DNA test. I was diagnosed in 2002. I was able to continue to participate in my usual activities until approximately 5 years ago. I then started falling which led to multiple serious injuries requiring multiple surgeries. 

Are there any others with FA in your family? No, I am the only one. I do have two brothers and two sisters so the odds were good that one of my siblings could have also received the recessive gene.

Describe your transition from walking to walker/wheelchair. I walked on my own until 2012 when I had bad fall and tore a ligament in my thumb leading to surgery. I then started using a cane (not very helpful, but better than nothing.) In 2016 I bought a rollator. This was a lot more helpful then the cane but I felt extremely self-conscious using it so it collected dust in my garage. I continued on with my cane until September 2017 when I fell and broke my ankle. At that point, I had no choice but to use a wheelchair since my leg and foot was in a cast. I have to say, I believe my broken ankle was a blessing in disguise. I had been having a very difficult time walking for the past 18 months or so. The wheelchair alleviates all of the stress and anxiety associated with physically moving from one place to another. I should have used the wheelchair much sooner but I did not want to give up on walking. I realize now that I couldn’t have “given up” on walking because continuing to walk was not really a choice for me. The wheelchair has turned out to be an amazing tool that allows me much more freedom than I previously had. I can now look people in the face when I’m talking to them rather than staring at the ground trying to keep my balance. I only use my wheelchair outside my home. While at home, I use my rollater. The cane collects dust in the garage.

AlexMerriam2What do you like to do to stay active and what type of exercises work for you to stay strong? I have been extremely lacking in this area. Now that I’m using a wheelchair, one of my goals is to participate in a regular exercise program. I think I will explore riding a stationary bicycle and then eventually moving outside to a Catrike.

Do you have any hobbies or special interests? I am an avid motorcycle rider. I obtained my motorcycle license on my 16th birthday. I love going on long cross-country trips. There is no better way to experience the countryside than the open air of a motorcycle. I now ride a Can Am Spyder which is a three wheeled motorcycle that I can strap my rollater to.

What is a good trick to make daily life easier? Get up early and give yourself extra time to complete activities because FA causes you to be a lot slower at things than you think. The extra time will reduce stress and anxiety.

When FA gets you down, what do you think/do to feel better? I think about my children. They never knew me before FA so they think that this is just the way I am and treat me like everyone else. If they can accept me with FA as “normal”, then so can I.

What is one way living with FA has POSITIVELY affected your life? FA has taught me patience and humility which I probably would not have learned without FA. I also have empathy for others with disabilities which I may not have fully understood. Finally, I think living with FA has motivated me to be driven and successful.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? The diagnosis is not as bad as it sounds on the Internet. You can certainly live a full and productive life. I have been able to accomplish everything I have set out to accomplish. I just won’t put tight rope walking or unicycle riding on my bucket list.

What is the first thing you want to do when a cure/treatment to FA is found? I have already made a deal with my wife that if a cure is discovered, I can go straight to my local Harley-Davidson dealer and buy a brand-new motorcycle.

"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? The brain is an amazing thing. I get busy living my life and accomplishing what I set out to accomplish and I can literally forget that I have FA. You just have to make sure that your goals are realistic. I am never going to be a marathon runner or tap dancer, but I can be good of my profession, a kind and loving husband, a fun father, and a good friend to others.

Tell us a little more about you…My father is an almond farmer. I had a Commercial Drivers License and drove a semi truck hauling almonds during law school. I have never actually met anyone else with FA in person.

 StephanieMagness mtcsig 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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