Let’s talk about diagnosis… with Chris – Ataxia

Let’s talk about diagnosis… with Chris

Let’s talk about diagnosis… with Chris

Post Published: September 23, 2020

After being told she had anxiety for years, Chris knew it was something more and pushed for a second opinion, then she was diagnosed with late onset Friedreich’s ataxia.

Hi my name is Chris, 73 years young and three years ago was diagnosed with late onset of Friedreich’s ataxia.

As you may know, FA normally starts in adolescence. I had been very fit and active throughout my adolescence and adult life up to the age of 50 years old and having two children. Then I started to get an unbalanced feeling in my legs and feet. I was walking very stiff legged and swaying as though I was drunk at times. Even my children used to laugh and say “Mum stop walking stiff legged”. 

I worked at a large hospital in Nottingham, where I live as a ward receptionist, until I retired at 65. It was embarrassing people looking at me and I used to try and laugh it off when the staff used to say I walk as though I am drunk.

I eventually went to see my GP who told me it was anxiety; hence I was put on tablets.

Time carried on and I started to sometimes have trouble pronouncing certain words.

Still kept going back to the docs; still saying it was anxiety. 

I couldn’t carry any drinks as I used to spill them.

After 20 years of being told it was anxiety, I asked to be referred to see someone else as I knew it wasn’t just that. I saw a neuro consultant who said there was something, and I had all the tests and scans you can imagine. He put me in front of 40 neuro consultants and registrars in a meeting. My goodness it was scary!

After two weeks they told me it was Iate onset FA, which they found in my second gene; the last test I could have had.

I am now under the care of the Ataxia Clinic at the Royal Hallamshire Hospital in Sheffield. All the staff are so helpful and good.

My walking has got a lot worse and am now walking with a rollator. My hands shake a lot when I am doing things and, sometimes, I get muddled with saying the odd word. I get very frustrated and never thought I would end up like this.

I am very young at heart. I live on my own but have a six-year-old French bulldog called Norman. He is my best friend and have had him since he was eight weeks old. He has to have a dog walker every day now as I cannot manage walking him, which hurts me so much as I used to love walking him. We used to go out for hours on the country park with friends and their dogs every day.

I am very lucky I live in a bungalow so there’s no stairs to contend with.

Thank you for reading my story.

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