Name: Leah Alstin
Age: 43
Where do you call home? Australia 🇦🇺
What is your education [degree(s)]? What is a current goal you have with your education? How will FA add to your future [career]? I have a bachelor of primary school teaching. I have worked as a teacher and am now a part time teacher assistant. I love being able to expose children to disability and help them realise that it’s ok to be different.
Who do you live with? (i.e. parents, siblings, roommates, pets, spouse, children, etc…) I live with my husband Joel and two children, Milla (17) and Chad (15). Also our two dogs, Olly and Frankie.
What’s a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) I drop my children at school in the morning. I then go to Physio or the gym. On Wednesday, I work all day and some other days I work as well so it depends on the day.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed with FA 25 years ago. I was 17.
Are there any others with FA in your family? I have a couple of distant cousins with FA .
Describe your transition from walking to walker/wheelchair. -OR- Describe an adaptation and/or transition you have had to take due to living with FA. Wow! That’s a big question! I walked unassisted until about 30. I probably needed a Walker prior to this but I used to rely on my kids arms for balance. Then, when I was about 35, I started using a scooter every now and then just because it was easier and faster. Now I use a wheelchair when I’m at home because I get jobs done a lot quicker and safer. I still walk with a walking frame sometimes and I still use my scooter sometimes so I kind of mix between all three.
What do you like to do to stay active and what type of exercises work for you to stay strong? I try to do something physical every day. I have done this since I was first diagnosed. Whether it be sit to stands at the kitchen bench or just stand balanced at the bench. I go to Physio three days a week. I’ve done hydrotherapy in the past. I’ve done swimming, I’ve done yoga and Pilates. I’ve tried pretty much everything! I think doing incidental exercise is really good for function. Things like getting in the car, doing the dishes, doing the washing, making the beds, cleaning up the house, folding washing… It all helps.
Do you have any hobbies or special interests? I love shopping. I love reading. Hanging out with friends is really special. Going for coffee or lunch or breakfast. Spending time with my family. Watching my kids play sports. I enjoy a wine or two. I love going on holidays. I like crocheting.
What is a good trick to make daily life easier? Never be afraid to ask for help.
When FA gets you down, what do you think/do to feel better? I go shopping LOL. Shopping always makes me feel better. Hang out with some of my best friends. Explain the way I’m feeling to my husband and kids and they always know how to make me feel better.
What is one way living with FA has POSITIVELY affected your life? I’m very empathetic, understanding, and patient. I have also met some pretty amazing people. I feel like I’ve taught a lot of people that it’s okay to be different.
What is a favorite motivational quote of yours? “Be kind always. You never know what someone else is going through”
What is a piece of advice that someone with FA has given you that encourages and inspires you? Keep moving, do not stop!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Every FA diagnosis is so different. Do not compare yourself to others. Just keep doing you.
What is the first thing you want to do when a cure/treatment to FA is found? Go for a walk with my husband and kids
“I have FA but FA doesn’t have me.” What does this statement mean to you? To me it means that yes, I have FA and probably always will, but I will never let it stop me from doing what I want to do.
How do you live your life in the face of adversity? I won’t lie, some days it’s really hard, but the majority of the time I try to look at it as how can I help other people in the world? Because I do live with adversity, I do have something very different from others. I try to use it to my benefit as if it’s my place in the world. I have FA because I can do something good with it.
Are the healthcare providers in your town familiar with FA? Yes, some of them are, however I feel like I have done a lot of work around this. I’ve created a lot more awareness in my local town so, yes, many people have heard of FA.
Is there support available from the healthcare system? Yes. I am very lucky to live in Australia. We have something called the NDIS (national disability insurance scheme) and this provides funding to those who have a disability. It allows us to purchase things like wheelchairs and other mobility aids and it also helps pay for therapies and care within the home.
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? I would firstly say that Australia is very accessible. I have travelled to a few different countries and Australia is definitely the best for accessibility. I would encourage you to go to our capital cities like Melbourne and Sydney. Also, tell you to visit some of our beaches. Maybe take a drive along the Great Ocean Road. Go to see an AFL football game in Melbourne at the MCG. Australia is a beautiful country so no matter what you do, you can’t go wrong.
Do you know anyone else in your country with FA? If so, have you ever met them? Yes I know quite a few people in my country who have FA. I love them all. We have something very special in common that not many people can share. We just know how each other can feel sometimes.
Did your diagnosis impact your friendships and relationships? If so, in what way? No it didn’t. My friends were very understanding. My boyfriend and his family at the time were great.
What do you wish the general public understood about FA or disabilities? I wish that people understood that FA does not affect your cognitive ability even though your speech may be affected. It doesn’t mean that you don’t understand what is going on or what is being said. I feel like this is the case for many disabilities, not just FA. I also wish people understood that we have feelings too.
Has FA had an influence on your course of study or work? If so, in what way? Yes it definitely has. I do some public speaking in my hometown. It’s normally to school aged children, secondary school age, teaching them about FA and disability. I’ve also been the MC and guest speaker at a few disability events.
Are there any modifications that have made it easier for you to pursue your education or work in your job? I wouldn’t say modifications that have been made just for me but, yes, modifications which improve accessibility in general. For example, many of the schools I work at or speak at are very accessible with wide doorways, lift access and ramps. Just making the world more accessible makes it easier to pursue education and employment.
What is your favorite part of your education or work/career? Working with children and answering all their interesting questions.
What is your favorite part of being a parent? I love everything about being a parent. I love every age, every stage and every memory that is made. I love being able to care for them and make them feel safe. I love being able to chat with them and as they get older and have a little best friend who is around all of the time. I love being able to show them that disability is a normal part of life and you can make the most out of anything.
Did you know you had FA when you became a parent? Yes
What’s one piece of advice you’d give to other (or soon-to-be) parents with FA? Do what works for you! You are unique but that is a good thing. Not a bad thing. Try not to follow parenting trends…make your own trends. You are raising a child or children who are going to be very empathetic and special in this world. The world needs more children raised by parents who have FA or any disability.
What is your favorite movie or book? My favourite movie is Dirty Dancing. I love the soundtrack.
If you could live anywhere in the world, where would it be and why? Australia 🇦🇺 it’s safe and accessible.
Are you a night owl or an early bird (do you prefer staying up late or waking up early)? Early bird, I don’t like the dark.
Interview by
Jamie Plourde
Edited by
Carrie Bolinger