Hard life- Living with a life limiting disease
As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
This is Harry's personal account of living with a life limiting disease:
Where do I start... My progressive ataxia was diagnosed 6/7 years ago at the same time my partner was diagnosed with dementia. Although I looked after her for many months at home I became very concerned, not just for my health, but do I continue caring for her on my own or seek help. Which I did.
I had a carer come in twice a day, it was helpful but eventually my own health started to suffer as I began walking unevenly, almost like a drunken state. I began to lose my temper with my partner and it was a bad sign.
My mother at this time, was already in a nursing home due dementia so I had a double hit within the family. Nevertheless, a family member stayed with her whilst I saw a GP, then a neurologist who after blood tests and CT scan confirmed I had ataxia. It was a progressive type which had rapidly impacted my walking as it became more of a shuffle with falls and trips. To think I used to walk for miles with such ease now I use 1 or 2 sticks and or mobility scooter.
My life since I retired has changed so much. I use to love to travel, drive my car even shopping but these now all leave me very tired and weary. I now wake up with pains in my legs and I also have problems getting out and about. But I'm sure my ataxia was due to stress.
I have since lost 2 of the most important woman in my life and feeling of sadness on a daily basis.
On behalf of Ataxia and Me, I would like to thank Harry for sharing his story with Ataxia. Once again it is important #SpeakUp as there are more than just physical effects in suffering with Ataxia or another life limiting diseases. Nevertheless, I wish all the best for Harry in the future and hope he gets all the support he needs!
If you would also like to get involved and share your experience with Ataxia or other rare condition, please get into contact with us through our social media linked below:
> Beth Soden - Media Coordinator for Ataxia and Me