Helen Kearney Name: Helen Kearney

Age: 32

Where do you call home? Dunlavin, a small village in Ireland.

Education: Commerce Hons degree from University College Dublin

What is your relationship status? Do you have any children? Single; living alone, but close to my hometown.

What is a typical day for you? I get up myself, make breakfast and get dressed. I’m a para-equestrian dressage athlete, so each morning I try to do something with the horses; generally riding and a little bit yard work. I return home and my carer then comes in and helps me with housework and helps with my lunch. Then, I relax for the afternoon and possibly do some computer work, if needed.

How long have you known you are living with FA? I was diagnosed when I was 13; I am 32 now so I have been living with the FA for 19 years.

Helen Kearney Describe an adaptation and/or transition you have had to take due to living with FA. I managed to walk during secondary school. In college when I was 19, I got my first wheelchair but I did not use it much, I used my wheelchair and scooter and walked a bit during college. Then, when I was 23, I started using it more. My transition to wheelchair was very gradual and I only started using a chair for bits and pieces, so when I came to need it all the time I was more used to it.

What do you like to do to stay active and what type of exercises work for you to stay strong? I really enjoy the horse-riding. It seems to be really beneficial because it does not work your body too hard but it does work every part a little bit. I like using a recumbent trike because it’s different and very casual for me. It can be nice to get out in the fresh air and going downhill is quite fun. I try to walk approximately 200 meters every day with the help of a posterior forearm supported walking frame because it helps me keep the ability to stand.

Do you have any hobbies or special interests? I love cooking and eating, so food and finding new recipes is definitely a hobby. I also like to make sourdough bread. My carer is really helpful that way and we devote a lot of our time to food.

What is a good trick to make daily life easier? Using floor to ceiling poles; I have one beside my bed and one beside my couch and they make transfers easy and safe. I really like cooking, but it is very easy to get burnt in the kitchen and I find it really helpful to have a lap tray on my knee so I can put a hotpot on it. I find laces difficult, so I buy elastic no tie laces. I use Alexa and smart bulbs because lights hard to switch on, particularly at night time when my room is dark. My feet get really cold and I use foot warmers a lot and they are really great because are used to get bad chilblains. I don’t like doing a lot of typing and I use Siri on my phone and laptop to help me. It is also good for my speech.

When FA gets you down, what do you think/do to feel better? I let myself cry. FAers losing abilities is a continuous process and I have realized it will continue to get me down and I try to give myself permission to be upset. When I have had a cry, I try and focus on what I am upset over and what I can do differently to help myself.

What is one way living with FA has POSITIVELY affected your life? I definitely would not have got the opportunity to ride horses every day if it was not for FA.

What is a favorite motivational quote of yours? "The harder I work, the luckier I get."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Pursue what makes you happy, even if you think it will be something you can’t do when you get worse. Small changes can make a big difference and prolong how long you can do it.

What is the first thing you want to do when a cure/treatment to FA is found? Groom and care for my horses. While I am resourceful and I can find ways to do different things, I would love to be able to do more.

Helen Kearney "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 am a victim of circumstance and definitely FA has impacted my life positively and negatively. It is not all that I am and I can say I am happy and I have found a way to have a good life. I definitely have to live my life unconventionally but I am actually quite proud that I can be resourceful when coming up with a new way to do things in the face of FA.

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