Let’s Hear From Some Volunteers – Ataxia

Let's hear from some volunteers

Let's hear from some volunteers

Phillip Clark - Coordinator of Bristol Support Group
"I have been working with Ataxia UK for a while now and found them as a result of my daughter having the condition. Knowing first hand what support one may need I felt I would like to see if I could contribute, but just did not know how. Ataxia UK and the people that work there are kind, friendly, efficient and so positive; offering the tools, guidance and framework for anyone with energy to input such in the correct manner. They have helped me reap the reward of providing some support for local people, and I love volunteering as I see that through a little care and effort one can offer support which matters."

Phillip Clark - Coordinator of Bristol Support Group

Patsy Riggs - Coordinator of Ipswich & Colchester Support Group
"I co-ordinate the Ipswich & Colchester Support Group and looking forward to the return of our meetings. When I was diagnosed with cerebellar ataxia in 2002, I searched the internet for information and found the Ataxia UK website. Their helpline was invaluable to me and although when first invited to start a local support group, I didn't feel confident or able to do it, their encouragement persuaded me otherwise.

Running this group, has from the start and still is, the main focus of my life. It is so rewarding and indeed therapeutic, I really enjoy the communication with people who understand my own challenges.

Covid-19 is preventing us from physical meetings but I write a monthly newsletter with snippets of news from everyone. The words of appreciation are really rewarding and although I suffer with anxiety, it is very worthwhile. Keeping things informal means that we support each other."

Patsy Riggs - Coordinator of Ipswich & Colchester Support Group

Derek Wood - Coordinator of Farnham Support Group and Ataxia Centre Volunteer
"I was diagnosed in 2009 with idiopathic spinocerebellar syndrome, and for all but the last six months I have managed with a walking stick. However, after a series of falls last year I now use a four-wheeled rollator.

I was asked by John Chapman three years ago to volunteer at the Hospital for Neurological Diseases in Queens Square London. My role is to talk to patients about their appointment and make them aware of Ataxia UK and the type of help the Charity can provide.

However the most significant thing I can ‘Bring To The Party’ is to try to encourage the patients I see, many of whom have never before met anyone else with the condition. Now and again I’ll be pre-warned that a patient I’m about to see is angry with everything and everybody, so I see it as my job to cheer them up before they leave. Thankfully I’ve been fairly successful in that and offered them advice or recounted stories of my own problems with ataxia. When I tell them about struggling to insert a key into a keyhole, or pick up a coin or something small from the floor, they realise I do know a bit.

It is by some distance the most rewarding thing I've done in my life and I really have missed my once a month trip to Queens Square because of the lockdown."

Derek Wood - Coordinator of Farnham Support Group and Ataxia Centre volunteer

Derek Taylor - Chair of West Of Scotland Branch
"I’m currently Chair of the West of Scotland Branch, having been treasurer of the Branch for about 10 years before this. I want to ‘give something back’ to our community and to use my skills and share experiences to help and offer support to my fellow Ataxians. As well as being affected by ataxia, I think Ataxia UK 'punches above its weight' in the support it can provide via support groups as well as the helpline and research."

Derek Taylor - Chair of West Of Scotland Branch

Rebecca Downing
"I volunteer for Ataxia UK because I make a positive difference to the lives of those affected by ataxia in many ways!"

Rebecca Downing - Volunteer at Ataxia UK


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