Tuesday, 24 November 2020

Ataxia UK - It Works For Me - Video

The first lockdown was particularly difficult for me to get my head around but I managed to find different things that helped me slowly move forward.

As a result I now have/use a few different activities, online shops and services that ordinarily I would not have tried.

One thing that really helped me is the activity group provided every Friday by Ataxia UK. It gave me purpose every week by watching the film or reading the book that they were going to discuss and it allowed me to meet new people, even if it is not in person. Volunteers and the service that they provide may be small but it is invaluable tome and I cannot praise them enough.

When I was approached by a member of their team who explained that they were still going to have an Ataxia UK conference this year but entirely virtually using zoom and would I be involved, I was happy. Having a virtual conference meant that I could attend.

They asked me if I would produce a video for them to show at the conference of how I cope with my ataxia on a daily basis. Initially I was unsure whether I could do it, mainly because I do not like sound my voice but after having thought about it for a while I decided to go ahead.

It did keep me occupied. I had to learn how to use the video functions and how to add the audio and put everything together, as well as writing the script and and picking everything that I wanted in the video and editing. Very different than blogging!

It took me awhile but I produced a video that is just over 7 minutes long. Unfortunately, I was not at the conference when they showed the video but I understand that it went down pretty well. The most surprising thing was that when I posted it on Facebook with a button to donate to ataxia UK it raised £150 in 24-hours that is the power of volunteering right there!

So without out further ado here it is:


  1. Thankyou so much Emma! I am 34 and also have Friedreich's ataxia, diagnosed when I was about 11. You're video really touched me as I have quite a lot of similarities with you, particularly with the things that help you cope, life is definitely a bit of a struggle for us and not really many people understand. But I hear you sister!!😁much love, Jade Marshall xxx

    1. Thank you Jade, I'm glad you liked it, I hope you are staying well xx