We have it and we have to live with it – a story by Ataxia UK’s Friend Christine - Ataxia UK

We have it and we have to live with it – a story by Ataxia UK’s Friend Christine

Post Published: February 3, 2023

Hey everyone! You may remember me from my previous blog. I’m back and would love to tell you more about myself!

I am blessed to have two wonderful children and three adorable grandchildren who are very dear to me. Throughout my life, I have always enjoyed crafting and participating in fairs. Up until 2015, my friend and I would always go away for one holiday a year, and now I am so glad we did.

Five years ago, I demanded to be referred to a neurologist. I had every test, scan you could think of under the direction of my consultant, who knew that something was wrong. I was eventually diagnosed with late onset FA. The condition has gradually gotten worse, without any medication to help. I am unable to walk without my four-wheeled walker. My hands shake awfully when I am doing things (like spreading bread, etc.) and I look like a clown when I am trying to put makeup on, particularly mascara.

There is slurring in my speech. There are certain foods that I have difficulty swallowing. There have been a few times when I have fallen. My writing is shocking. One good thing at the moment is that I can still drive that’s because I am sitting down, but I am looking for an automatic vehicle.

The process of adapting is very challenging. I have a cleaner who visits once a month to give my house a deep clean. Pushing the hoover a bit and knocking off dust is all I can manage. I have a hairdresser for my hair (I have always managed my own hair) but cannot manage to dry it properly. My shopping is delivered.

As much as I can, I try to walk, but I get very tired after a while. Currently, I am struggling with my dog. It would have been impossible for me to keep a pet if I had known I would develop FA. But HAY HO I love him very much. I have had him since he was 8 weeks old. He’s nearly 8 years old now. I have a grabber to pick things off the floor as I either fall forward or backward.

There is one thing I would be lost without: my wonderful family. Whenever I have to go to the ataxia clinic in Sheffield, my daughter escorts me.

To those living with ataxia, I say: We have it and we have to live with it. There are some days when I weep and get very angry. It’s then that I need to check myself

back into reality. Take advantage of all the help you can get. Do something if you are able instead of sitting and doing nothing. You can get your aids through Occy health/therapy. I try and make situations a bit easier for myself. Don’t be embarrassed as I was at first.

Best wishes to you all x

Christine Pygall

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