Unshaken Voices, a platform where  real people with ataxia share their inspiring journeys—through written narratives, videos, blogs and more. 

 

Follow one of our longtime members story on her blog at 

https://friedreichsataxiajourney.wordpress.com/

 

 

 Media Library - Ciaran The Scenic Route By Ciaran McLarnon

           

 I was diagnosed with Cerebellar Ataxia in 2007, although I  was given a more precise diagnosis of SCA (Spinocerebellar Ataxia) type 10 in 2017. In 2007 I couldn’t walk in a straight line, had very poor handwriting, and spilt most drinks I carried. The untreatable condition only gets worse; in 2025 I can’t walk at all without an aid (I’ve recently started using a wheelchair), using a pen is impossible, and haven’t carried a drink since 2012! But I’ve been lucky, most people living with Ataxia experience a much more rapid decline in their physical health.

I’ve seen and heard Ataxia described as a life-limiting condition, I think most of the people worldwide who have any of the 200 or so types of Ataxia would agree with that. I’ve mentioned a few, but the list of limitations is long. Some, I can’t swim or ride a bike, are avoidable and easier to accept. But some others, such as the constant threat of falling down, the inability to do anything fast, or working up a sweat tying shoelaces, are frustrating reminders of those limitations every day. I hold a rail to brush my teeth, if I ever switch hands and am holding onto nothing for just one second, I'll fall backwards. People often ask me if Ataxia is painful; it isn't, unless you hit something hard on your way down.

            AFI and organisations like it offer ways to make the multitude of limitations easier to bear. Research, establishing effective and recognised treatments, could reduce the impact of limitations or remove them, as can offering assistance in buying medical equipment. But treatments are hard to find, medical equipment is never quite right. The aspect of the charity’s work that I know best is the social events and respite that it organises.

The most effective treatment for Ataxia, as is the case for many conditions, is a positive attitude. AFI encourages this attitude in its members, and gives them a chance to escape the challenges of Ataxia, and this is the aspect of AFI’s work that I know best. I’ve attended many AFI social events, and enjoyed their respite weeks in each of the past three years. One popular event that occurs every year is a visit to Dublin Zoo. It’s a fun day out for families with young children, Ataxia affects young and old alike, but a slice of the fun goes to the adults too. The adults still hope for good weather, want to see as many animals as they can and have their favourites too, but maybe the human animals are a little bit more important then. The typical day is blinding sunshine followed by torrential rain, weather as unpredictable as any Irish summer day; but seeing so many familiar faces in a relaxed atmosphere is more important. People chat about the therapies they use, talk about the problems they must deal with, and most importantly the details of how they live their life. Everyone does it differently, and  AFI allows members the chance to see that other people deal with these challenges, so they can too.

 

 

 

My Journey by Brona Kearney

 

My journey with Friedreich’s Ataxia (FA ) began when I was diagnosed at 10 years old, which is 23 years ago. At first, the diagnosis didn’t really mean much to me because I didn’t understand it. FA is progressive, meaning what you can do, keeps changing so when you think you have gotten to understand FA, something  new happens.

 

My symptom of “scoliosis” lead to my diagnoses, although I had some symptoms like dropping things, balance issues, falls, and trouble running, I didn’t realise were connected.

 

When diagnosed, I could still run short distances, I'm now a full-time wheelchair user, and although people often think the wheelchair is the biggest change, it’s not. You can adapt a wheelchair as it becomes just another tool to get around. The real challenge is that FA doesn’t stop at the legs. It affects my upper limbs, my speech, my hearing, my eyesight and it touches every part of my independence.

 

Losing my speech and my hearing has had a huge impact on my mental health. Walking into a crowded room and realising I can neither hear properly nor speak clearly is incredibly isolating. In my daily life I have become increasingly dependent, I can’t cut my food, transfer between seats, go to the bathroom without help or get out of bed without help. It’s a level of vulnerability that's hard to put into words.

 

At the same time, technology has given me a lifeline. I work four days a week, using adapted computers and assistive tech. I’ve found small victories in things like screen readers or mouse and keyboard alternatives that allow me to stay connected and independent in ways that weren’t possible before.

 

Mental health remains a daily battle, but I've found strength through purpose. I’ve started documenting the barriers I face, hoping that by sharing them, I can help others avoid the same pitfalls. Whether it’s accessing adaptive technologies or pushing for new treatments, I want my experiences to make things a little easier for the next person.

 

Community has been essential too for my mental health. When I started a FA registry in Ireland, it helped give me a purpose and feel less alone. It reminded me that, as isolated as FA can make you feel, we're not alone, and when we advocate together, especially as new therapies emerge, our voices are stronger together.

 

A quote I find such inspiration in is “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!” (Ron Barteck, FARA)

 

Even now, stigma and misunderstanding can be exhausting. I remember when I first needed to use lifts or disabled parking spaces, people made comments because I “looked healthy.” You feel judged just for trying to exist. Over time, I had to accept that I couldn’t live up to other people’s expectations. I needed to build a life based on what worked for me, not what others assumed.

 

Things like hydrotherapy, riding my trike and horse riding still give me a sense of freedom. They're my escape. Without them, I honestly think I’d feel trapped inside the house, and inside myself.

 

I won't pretend it’s easy, losing the ability to do basic things, drifting away from friends who move on with life milestones, seeing my sister also living with FA and knowing what’s coming next. But finding purpose, staying connected to the community, and having a strong support system have been the anchors that keep me going.

 

At the end of the day, what helps my mental health most is turning the hard parts of my journey into something useful for others, making sure no one else has to face the same battles alone.

 

 

AFI Getting to Know You Questions:

 

Media Library - Anita and Emmet Anita and Emmet

 

AFI Getting to Know You Questions:

Read Anita's answers  

  1. Name: Anita Gracey
  2. Born 1971 – the year Ireland and the United Kingdom both switched to decimal currency.

The Eurovision Song Contest was held in Dublin. It was the first colour television broadcast by RTE.

Members of the Irish Women's Liberation Movement returned to Dublin bringing contraceptives from Belfast on the so-called "Contraceptive Train" to protest against the law banning their importation.

Internment without trial was introduced in Northern Ireland. 

 

  1. Who do you live with? My cat Rosie, and sometimes a lodger.
  2. What's a typical day for you? 

I employ a Personal Assistant through a UK-wide government scheme called Direct Payments. Every morning she/he would support me by assisting me out of bed, showering, light exercise, preparing meals, household chores and attending appointments. I try not to eat after 6pm or snack in a bid to monitor my weight. Sometimes I need a power nap during the afternoon. I fill my time with hobbies.

 

I write poetry, I a run a book club, I enjoy art galleries, theatre, reading, Sudoku, eating out, cinema, and I’m a lifelong fan of Bruce Springsteen.

 

Once a week, I would do online grocery shopping; I attend classes in poetry writing, yoga, as well as zoom classes in dance exercise and meditation.

 

Monthly, I write to my pen friend in Texas death row. I attend Ataxia Foundation Ireland meetings as a trustee.

 

  1. How long have you know you are living with FA? When and how were you diagnosed?

I’m the youngest of seven. My sister was the first to show symptoms. It took a while to diagnose, and other conditions were considered before Friedreich's Ataxia was confirmed. Subsequently two brothers were diagnosed with FA. One brother is a carrier of the gene. I suspected that I did too from 12 years old. My co-ordination at handball was the first giveaway. No matter how much I practiced I just couldn’t get beyond three-ball, unlike my peers. I remember a blur of rainbow colours when they played against walls. Also, a second cousin was diagnosed when she was seven, and is active with FARA.

 

I grew up in an era where you didn’t talk about the ‘elephant in the room’. So we didn’t talk about it as a family, I guess it was too enormous to confront. The enormity of it didn’t hit me for years, Because my siblings developed it first and I knew you just dealt with it, as best you can. It was very slow to develop. During my teens, most people didn't notice anything, but I did, because I wasn't good at running and skills like cycling fell to the wayside (literally). People thought it was because I was smaller.

 

Towards the end of my school years, a teacher noticed I was particularly slow at taking things down from the board - it affects handwriting. After my writing, my walking was affected. It makes you unsteady on your feet, so I was sometimes accused of being drunk when I was sober.

 I wasn’t formally diagnosed until I was 17 years old.

As is common, I was diagnosed, given the FA label and left to my own devices. There wasn’t even Google in those days, and I got very little information from my own research. I know I could have benefited from counselling, a dietician, and early prevention physiotherapy.

Diagnosis means a fear for the future. Some people with FA will limit themselves as they don’t want to ‘put anyone out’. Others will wrap themselves in cotton wool and become institutionalised in their own home. I’ve felt both at times. Nights out have been denied me, as people don’t want to assist me on the toilet. Holidays I’m not invited on, as people see me as an inconvenience. I can’t buy tickets in advance, as countless times, there is no accessible transport available.

I don’t think too far ahead, that is overwhelming. I think about life in baby steps.

  1. Describe your transition from walking to walker/wheelchair. 

I was using a rollator for a few years when I had the flu; I was in bed when someone phoned to tell of the Twin Towers collapsing. I couldn’t take-in the horror, so used the wheelchair to get to a TV. It was the first time I used the wheelchair in the house and so 9/11 is my ominous date. Using the chair made it much easier for me to get around and helped me stay on top of things, as I was a lone parent and employed. Looking back, I had a three wheeled rollator, I’m sure if I had one with four wheels, I would’ve stayed on my feet longer. Now I must use the wheelchair all the time.

  1. How do you find the health service?

The National Health Service NHS was once lauded the best health service worldwide. But it has been run into the ground by successive budget cuts and lack of investment. I’m on a waiting list for an accessible dentist, to have two teeth removed. I'm on a waiting list for bladder stones surgery.

Every day I must fit in with ‘normal’ life. I remember having to meet with a teacher in a storeroom, whilst other parents met in an upstairs classroom. I was employed in a responsible job about which someone once said, “sure it gets you out of the house”. So, yes, I face barriers in this mainstream world with peoples’ attitude towards me being the most difficult to overcome. I remember being with my six year old son for his dental medical appointment, and the medical staff bombarding me with intrusive questions about FA. I didn’t want to answer them (but I did), I wanted to focus on my son’s healthcare.

I used to carry a booklet to medical appointments with me, to help bridge the gap in their comprehension. It’s improving.

  1. What do you like to do to stay active and what type of exercises work for you to stay strong?

I attend chair yoga. AFI facilitate chair dance class on zoom I have dumbbells as well, but to be honest, they collect dust most of the year. Daily I exercise to relieve aches and stretch unused muscles. I find it benefits my mental health too.

 

  1. What is a good trick to make daily life easier?

Set yourself achievable goals. Even small things count – could be cleaning out your fridge, doing a crossword, or exercising.

 

  1. What is your favorite aid/ adaption in house?

Lap tray – I use it all day, everyday.

Tipping kettle is also useful for me.

 

  1. When FA gets you down, what do you think/do to feel better?

Play Bruce LOUD, drown out those negative thoughts!

Finding someone to talk to, whether they are family, friends, or a professional is good.

AFI have a telephone support line, and facilitate a peer support zoom.

 

  1. What is one way living with FA has POSITIVELY affected your life?

I think that having FA has given me more opportunities. I went to university in my 20s, which I'd probably never have done. If I'd been able-bodied, I would have left school, got a job, and got married. Instead, I discovered that higher education was something I could do - and would love to do. And I think I enjoyed university more because I was that bit older than a school leaver.

 

  1. What is a piece of advice that someone with FA has given you that encourages and inspires you?

Recently someone said to me, “Love yourself”. I play that in my head all the time. It’s so important to keep positive.

 

  1. What is the best advice YOU could give to a person who has been newly diagnosed with FA?

In life to take risks! You’re going to mess up sometimes, but that’s okay. Sometimes it’ll pay off in abundance.

Also, your brain is a muscle too, keep it busy.

 

  1. What is the first thing you want to do when a cure/treatment to FA is found?

Go to an outdoor music concert and dance and sing and dance some more! I am grateful that this offer of treatment is on the market. But I do ask, will this opportunity ever come to Ireland? If it does, will I be seen as too old.

  1. Tell us a little more about you….

I am a lone parent, and my beautiful son had a daughter in June 2024. The next chapter of my life is going to be amazing. I’ve been lucky to see Bruce in concert more than 20 times. I’ve been published over 50 times in poetry anthologies.

 

  1. If I were traveling to your area to visit, what tips would you give me about your favorite attractions, activities, etc?

Belfast is small and easy to get around and see the sights. Attractions include the Black Taxi Tour, the Titanic Museum, theatres and the Ulster Museum. Bring a raincoat and sunglasses!

 

  1. Do you know anyone else in your country with FA? If so, have you ever met them?

I live in Northern Ireland so have the benefit of being able to attend services in Ireland and the UK. Through Ataxia Foundation Ireland and Ataxia UK I have made many friends of my peers. It is a rare condition, and therefore isolating. As life evolves, people may just want someone talk to, while at other times may need more practical solutions. Having pursued help and support, I would encourage others to do the same.

 

Parents

 

What is your favorite part of being a parent?

Our wee chats, especially on weekend mornings, when we could take our time.

 

Did you know you had FA when you became a parent?

Yes, I was walking, but not steady. My then boyfriend was tested to make sure he wasn't a carrier of the defective gene. Thankfully he wasn't. Actually, when my son was learning to walk, he copied my gait, he thought this ‘normal’.

 

What’s one piece of advice you’d give to other (or soon to be) parents with FA?

For expectant mothers I would say eat healthy while pregnant, as it’ll help with weight gain. Also, breastfeeding is easier than having to sterilise/ make-up bottles. A third piece of advice is get access to a car; it makes life so much easier.

 

Fun Questions

 

How long have you had your hobby/special interest? How did it start? Why is it important to you?

Since taking early retirement from work I enrolled in a creative writing class and found a new love. So much of disability is what you can’t do, well this is something I can do. It would be a dream to have a collection published. 

             

What are your favorite book/ movie/ play?

‘The Butcher Boy’ by Pat Mc Cabe is my favorite book.

‘Being Alive’ is a great poetry anthology.

‘12 Angry Men’ is my favorite film.

‘Trainspotting’ based on the book by Irvine Welsh is my favorite play.

 

 

If you could live anywhere in the world, real or imagined, where would it be and why?

My mother grew up beside Emy Lake in Monaghan and has many positive memories. The people are so welcoming.

A fictional place is The Shire with Bilbo Baggins – I love the circular architecture of his cosy home and the laid-back lifestyle, with several meals a day.

 

Are you a night owl or an early bird (do you prefer staying up late or waking up early)?

Bit of both, I guess. Sometimes in the morning I wake-up with a poem ready to be written down, as if I’ve been dreaming about it in my sleep.