There is still a good life out there – a story by Ataxia UK’s Friend Hannah - Ataxia UK

There is still a good life out there – a story by Ataxia UK’s Friend Hannah

Post Published: February 1, 2023

Phoebe is 12 years old and has Friedreich’s Ataxia, she is a part-time wheelchair user. She lives in Devon with her younger sister. She is fun and outgoing with a wicked sense of humour. Phoebe loves weightlifting and disabled strength sports and goes to the gym 2-3 times a week. She shows great strength and determination and has had some wonderful opportunities, being invited to deadlift at Britain’s Disabled Strongman competition and the Arnolds Sport and Fitness Festival. Phoebe has also taken part in the International All round Weightlifting Association competitions (IAWA) and currently holds 3 world records in her age category. In her spare time, Phoebe likes going out to the cinema, shopping, eating out and VR gaming.

Phoebe was 6 when we noticed that she seemed clumsier and falling over more often, she would complain of her legs hurting when we were walking, and then she developed a hand tremor when lifting her drink to her mouth and started having trouble with writing. As a nurse, I noticed that her movements were becoming more uncoordinated, and the shape of her foot was changing. Initially, I thought she may have had a brain tumour and took her to our GP. She was seen in the dyspraxia clinic and offered physio, but it was clear during the first physio consultation that they felt this was more than dyspraxia. She was referred to a paediatrician and diagnosed with Charcot-Marie-tooth disease. However, we were then referred to a paediatric neurologist who diagnosed Friedreich’s Ataxia which was confirmed on blood tests. It took about a year from going to the GP to get a diagnosis of FA.

Phoebe has been having regular personal training sessions with Brydie Bruce and Jakki Floyd for over three years. She trains once a week with Brydie, her strength and conditioning coach, Brydie coaches Phoebe’s weightlifting, which has had such a positive impact on her physical and mental health and how she is able to manage her FA diagnoses.

Once a week, she has PT with Jakki focusing on incorporating Phoebe’s physio exercises and making them fun to music and supporting her weightlifting goals. Phoebe’s sessions with Jakki work on core, leg strength, balance, stability, and lots of stretching. These sessions help Phoebe work on essential movements that help her day-to-day movement and support her in maintaining her independence.

Jakki has been so passionate about helping Phoebe and has always wanted to run the London Marathon, so they applied and were successful in getting one of the Ataxia UK marathons places Jakki says ‘Phoebe’s strength, determination and sheer positive outlook on life and disabilities hit my heart hard. To represent Phoebe in the London Marathon and support a charity that supports her means the world to me” Phoebe has been helping Jakki with her fundraising, including supporting a bake sale and completing a deadlift challenge every day in December, helping Jakki raise over £650 towards her target.

It can feel overwhelming at the beginning, and the first few months or years can be difficult. Take your time to process, there is no one way to deal with it, and nothing will change instantly overnight. It is important to remember that being diagnosed with FA is not the end although life will be very different to what you may have had planned, there is still a good life out there. Do not sit around waiting for a cure, keep active the best way you can and connect with the Ataxia community. Many children and adults live daily with FA, achieving so much and offering so much advice.

We have found Ataxia UK really helpful as a source of information and advice especially attending the online conference. It has been particularly useful to keep to date with the latest research and clinical trial information and as a good way to connect to local people through regional branch meetings and events.

Phoebes’ advice is, “although sometimes it can be really difficult, don’t let it stop you from doing what you want to achieve. Reaching those goals that you set is way more rewarding when you know you have overcome a rare condition. On days you do not feel like doing anything, it is important to try and do something each day and also take a rest if you need it. Using a wheelchair does not define you in any way, and it is just a better, cooler away to go out and enjoy life.”

Phoebe Ames

Photo Credit:  PGRPhotography

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