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FARAFARA Cure FA

Adam Griffies

AdamGriffies1Name: Adam Griffies

Age: 23

Where do you call home?  Born and bred in Liverpool, UK.

Education (degree(s)); What is a current goal you have with your education? Until my FA diagnosis I achieved good grades in school, then when my A Levels started my focus evaporated as my thoughts were elsewhere. Since then, I have done a few courses, in particular a Social Sciences Access To Higher Education course which I passed with a Distinction in May 2016. I then went on to study Sociology and Criminology (BA) at Liverpool Hope University, but after finishing my first year there I decided my fatigue was making it too difficult for me. I am currently looking at Open University courses which should suit me better as they are done from home.

What is your relationship status? Do you have children? Where do you live? I am currently single and don’t have kids but I’d love this to change in the future. I live in a really nice flat alone, which I am extremely lucky to have. I also have family and friends nearby.

What's a typical day for you? I like to get up early, have oats for breakfast and normally listen to a podcast to set me up for the day. Then I get to the gym for an hour so. After that I’ll have lunch, either with a friend or my mum and get a few things done like odd jobs, shopping etc. In the evenings I like to relax by watching TV or reading a good book, and reflect on my day before bed.

How long have you known you are living with FA? (When and how were you diagnosed?) I was told I have FA in February 2010. I had a number of tests and then it was confirmed by bloods. My parents were actually told a couple of months before to help prepare for when I found out, which I understand. As strange as it sounds, my diagnosis was a slight relief (as well as being shocking and upsetting) because I finally had an explanation for why I’d been struggling with my main love – playing sports – for a few years. 

Are there any others with FA in your family? No. We don’t know where the gene originates. 

Describe your transition from walking to walker/wheelchair. Obviously walking became increasingly difficult after my diagnosis. I struggled on until I was about 20, only using a walking frame indoors. I hardly went out. Transitioning to now being pretty much a full-time wheelchair user has opened my life up so much. In hindsight, I should have used a wheelchair outdoors earlier. Why should we let a condition stop us going out?!

AdamGriffies2What do you like to do to stay active and what type of exercises work for you to stay strong? This is definitely a big one for me. Strength work has replaced playing sports as my main hobby. I get to the gym as often as I can, and with some adaptations, there aren’t many things there I can’t do. My fitness work is driven by a determination to disprove doubters and inspire people.

Do you have any hobbies or special interests? Like I said, fitness is my main hobby. I also like to listen to good music, read and chill by practicing mindfulness. I’m interested in psychology so listening to podcasts or watching videos about how humans think interests me too.

What is a good trick to make daily life easier? Knowing your limits and resting when you need to is definitely important. I’ve only just started to get this! In general, just be kind to yourself. Set yourself small goals and reward yourself when you accomplish them.

When FA gets you down, what do you think/do to feel better? I’ll normally go to the notes section on my phone, where I’ve written down loads of inspiring/motivational sayings. I also remind myself of my purpose, how far I have come and things I have to look forward to. Time to myself is important at these times too, so a good book/TV show/film to get lost in with a cup of tea and some chocolate.

What is one way living with FA has POSITIVELY affected your life? I’ve met inspiring people who I wouldn’t have normally and I’ve become tougher mentally and a more rounded person I think.

What is a favorite motivational quote of yours? I’m not sure who said it but I remember hearing on a podcast ‘if you’re having a rough time just take small steps to stay in the game.’ It’s similar to ‘progress not perfection’.

What is a piece of advice that someone with FA has given you that encourages and inspires you? My friend Michelle told me she never gets embarrassed by things FA makes her do now. I liked this, because it means there’s less chance of FA holding you back then. Just do your best. I also heard Kyle Bryant say ‘it doesn’t matter how long it takes; just get it done’.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I think fundamentally it doesn’t just mean your life hits a wall, as I first thought. Living with FA can be so fulfilling. Acceptance is key.

What is the first thing you want to do when a cure/treatment to FA is found? Kick a football against a wall for three hours.

"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 think it means not letting yourself be controlled by your diagnosis. Yes, we have a serious condition, but we are still in control of how we think.

MaryNadonScott mtcsig 17


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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