All About Ataxia: Gemma Sheen - Ataxia UK

All About Ataxia: Gemma Sheen

Post Published: February 21, 2022

As Gemma continues her search for her exact ataxia type, she volunteers at our All About Ataxia sessions.

I have a form of spinocerebellar ataxia but I am still undergoing genetic testing to determine the exact genetic type. The main issues for me are pain, fatigue and difficulty with walking. I use a walking stick as an aid when out and about and ‘furniture walk’ when at home. I can only walk short distances and that could be due to either pain in my legs stopping me or exhaustion due to trying to keep upright! Even the slightest uneven surface can have me toppling over.

I found out about Ataxia UK through the internet, although I would like to say that at my first appointment my neurologist gave me a leaflet about them for information, even though I had already found out about the charity.

I then joined the charity and started following it on social media. It was through social media that I found out about All About Ataxia (AAA) and decided to complete the two days, in October 2020. During the two days I heard about all the opportunities to volunteer and when I approached the office they thought I would suit being a facilitator on the AAA.

I think AAA offers the opportunity to receive clear and honest information from various health professionals, resources to gain further information, and the opportunity to meet others with a similar condition. We also discuss helpful tips about how to be referred to a neurologist with a specialist interest in ataxia or to one of the specialist ataxia centres in the country, and most importantly we gain friendship.

Despite being a facilitator on a number of AAA sessions, I never stop learning about the condition and always take away something new. It gives me an opportunity to meet others, pick up useful information from other participants and meet some lovely people.


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