Name: Kiara Lynch–Owen
Age: 39
Where do you call home? The North Midlands in Ireland
Education: A pass degree in software engineering, and I’ve spent six years as a disability writer.
Who do you live with? My husband
What’s a typical day for you? My routine changes quite regularly as my husband is at home during the weekends, and I also have a lot of hospital/consultant appointments which will force me to change around my routine. However, on an average day, my PA (personal assistant) comes at 8:30 AM, she gets me up, helps me eat my breakfast, brush my teeth, use the bathroom and get dressed by 10 AM. I usually do some physiotherapy then on my Moto (med bike). By 11 AM, I am usually checking my email, my PA comes back at 11:30 AM to help me use the bathroom. Then from midday until 1:30 pm I generally spend replying to email (this can be a time-consuming frustrating task as my dexterity and coordination have deteriorated to the point where I can no longer use a keyboard so I am only able to use dictation software, and my voice is more slurred now than it used to be. This means I spend at least an hour correcting my dictation. My mam heats up my dinner at 1:30 PM, and I will usually read the newspaper online and work on my blog until my PA comes back to help me use the bathroom at 3 PM. I keep working on my blog posts or online errands that I need to take care of. My PA comes back to help me to the bathroom at 5:30 PM and she heats/toasts a sandwich up for me. Usually I will listen to my audiobook or a podcast while eating, then I watch TV and relax for a half hour when my husband arrives home and we generally do some more physiotherapy – either I stand up on my tilt table or sometimes I do arm stretches and weights. It is usually 8 PM by now and I sit down in an armchair and put on my hand braces for one and a half hours. Then I have a snack and head to bed about 9:45 – 10:15 PM.
Are there any others with FA in your family: My older brother, Liam.
Describe your transition from walking to walker/wheelchair. My 1st reaction to using a wheelchair was “wow, the freedom!” I had gone from constantly having to hold onto someone’s arm to try and steady myself as I walked, and constant falls twisting my ankle/knee having bruises everywhere to the absolute freedom of going wherever I wanted, whenever I wanted. However, as I got further into the progression of Friedreich’s ataxia, I soon realized I should have fought harder to stay mobile as things became much more difficult much quicker than they would have done ever I if I had stayed more mobile for another year or two.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do physiotherapy every day for 40 minutes on my more moto (med bike). I do arm stretches and weights four days a week. I use a tilt table three to four times a week for 25 minutes, hand braces for as long as possible (maximum I am meant to wear them for is two hours a day which is 14 hours per week). I spend 15 minutes per day using my hand gripper and my physio bar. I also enjoy swimming and going for long walks/wheel. I find exercise is a great way to keep my mind active, it makes me feel like I am keeping some hope alive for when medication/treatment for Friedreichs ataxia becomes a reality.
What is a good trick to make daily life easier: I do my best to avoid dwelling on my Friedreichs ataxia, it does not help me. It is much better to concentrate on the present and do what you can.
When FA gets you down, what do you think/do to feel better: Try not to do dwell on what I can’t do and just get on with it.
What is one way living with FA has POSITIVELY affected your life: Having Friedreichs ataxia means I can see things from a lot of different perspectives.
What is a favorite motivational quote of yours: I don’t really have any. I just feel like this is the hand I was dealt, and I can either choose to play it or sit this game out. You only get one chance at life.
What piece of advice that someone with FA has given you that encourages and inspires you? My brother, Liam, never let anything stand in his way of living the life he wanted.
What is the best advice YOU could give to a person who has been newly diagnosed with FA: Don’t give up – keep trying. I know how difficult it is, but you have to try to keep living because you will not get another chance.
What is the first thing you want to do when a cure/treatment for FA is found? GET IT !!
“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? Friedreichs ataxia is something that I have, but it is not ME. YOU get to choose where your life goes.
How do you live your life in the face of adversity? There is no other choice. You just must keep going and trying to make things better for the next generation of people with disabilities.
Tell us a little more about you: I am just me, I am married for 11 fantastic years, I love travelling (seeing new things and having new experiences). I have travelled the world with my best friend over the last 15 years. I have tried paragliding, scuba diving, snorkeling, ziplining and skydiving. I have an amazing support network of my fantastic husband, my amazing family and friends whom support me.
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? It all depends on where you are going.
Do you know anyone else in your country with FA? If so, have you ever met them? Yes and yes.
Did your diagnosis impact your friendships and relationships? If so, in what way? Not really. If anything, it made my friendships stronger.
What do you wish the general public understood about FA or disabilities? That I am just same as them (obviously I need more help and the more time to do the same things as them, but I still want to do and try everything).
Has FA had an influence on your course of study or work? If so, in what way? I don’t know as the only life I have lived is one with Friedreichs ataxia. Maybe I have stayed close to my family because of my dependence upon them.
Are there any modifications that have made it easier for you to pursue your education or work in your job? No.
What is your favorite part of your education or work/career? I loved the social aspect of college, I enjoyed working as a writer for the Irish Wheelchair Association (IWA) because I got to meet a lot of different people from a lot of different backgrounds and they all had an interesting story.
How long have you had your hobby/special interest? How did it start? Why is it important to you? I enjoy reading (now I listen to audiobooks) and writing (now I use dictation software).
What is your favorite movie or book? My favorite film is the Shawshank Redemption; I loved Matilda by Roald Dahl as a young child.
If you could live anywhere in the world, where would it be and why? Maui, Hawaii because it is so relaxed and that the people are so helpful and genuine.
Are you a night owl or an early bird? I know I need to get at least eight hours of solid sleep.