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Living with Ataxia: Simon



Simon, who has Ataxia, is 53 years old, and lives in North London with his wife Lisa, daughter Millie and their recently adopted Jack Russell mix, Alfie. His other daughter is currently at university in Birmingham.

Ataxia Facts

Number of patients in the UK: Approx. 10,000
Cause: Mostly genetic, but can be acquired via serious head trauma or intoxication.
Description: A degenerative disease of a part of the brain called the cerebellum, which is responsible for coordinating movement via the nervous system. The name 'ataxia' is an umbrella term for various subtypes of the disease; the most common genetic variant is Friedreich's ataxia.
Symptoms: Many symptoms can mimic those of being drunk – slurred speech, stumbling, falling, and uncoordinated movement. Complications from the disease are serious, often debilitating, and can be life-shortening.
Treatment: Medication, physiotherapy, speech therapy and occupational therapy are available to alleviate the symptoms where possible, but there is no known cure.
Sources: www.ataxia.org / www.ataxia.org.uk

Simon was diagnosed with ataxia when he was nine years old but the doctors still aren't sure which type it is. He's taking part in an upcoming study in Sheffield to try and find out more about his condition.

I spent time with Simon in his home with his family; out walking Alfie; and also at the charity shop where he volunteers. This was his typical Sunday.


"We moved to this house after I couldn't navigate the stairs in our old home any more."






"Millie got that Victorian apple peeler off Ebay for herself, but Alfie has now developed quite a taste for apples as well"




"At my old job at one point I was told that they can't have me sounding like I'm drunk on the phone, because of my speech."


"I worked in IT customer support for fifteen years, until our jobs got outsourced. I haven't been able to find employment since; we are lucky that we can get by on my wife's salary for now. I'm currently a volunteer at North London Hospice, at this shop or the other one near my house."






"There aren't really things ataxia stops me doing entirely in my daily life, I just have to make adjustments. For example, I don't have fine motor control in my hands."





"We get all sorts of donations in the shop, I've seen it all. The things people bring in sometimes... "


"I first got the walking stick to make people more aware of me really, I didn't need it at the time, although I've now come to rely on it more over the years. I avoid travelling during rush hour though, to avoid problems with people pushing me by accident."

   
"We got Alfie because we all wanted a dog, but personally for me it's a good reason to get me out of the house and moving around."


"The scars on my head are from the time I fell over outside our house, before the ramp was built."


"Alfie's pretty strong actually, I have to be careful. You wouldn't expect it from such a little dog! Walking him is quite hard work for me, to keep up and not let him pull me to the ground, but it's also good exercise. He needs two or three walks a day."




"And he likes to keep our hands warm at all times!"


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If you've enjoyed this glimpse into Simon's life, and want to spread awareness of Ataxia and rare diseases in general, it's really easy to show your support by sharing this article simply by clicking one of the social buttons below!

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Donations are also very welcome both to Findacure and Ataxia UK to support their efforts.

Donate to Findacure | Donate to Ataxia UK

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