[The following blog is written with grateful thanks in memory of Tony – surname unknown – a remarkable individual who lived with FA until the age of 80]
For far too long I have been fixated on the fact that the median age of death for people with Friedreich’s Ataxia is just 35 years of age. This is particularly concerning for myself as I recently celebrated my 45th birthday. Every day is now a bonus and I try my best to live every day with love and respect for those who have lost their lives prematurely to this cruel disease.
Yesterday, I was given hope for the future by my Mum. Although I am a member of Ataxia UK and receive their quarterly magazine, I rarely read it. I keep any editions that I receive for my Mother who I know will tell me about anything I need to know. Yesterday, I gave her a copy of the Ataxia Magazine from summer 2021 and she drew my attention to the following article that I have copied below.
The article is about someone who lived with FA until the ripe old age of 80. As you can see below, he lived an active and fulfilling life, and this is what I am trying to mirror as I head towards my fifth decade. The words of Ataxia nurse, Suzanne Booth, from the London Ataxia Centre, which can be read below are encouraging.
So it’s good news for me, bad news for everyone else…
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Tony lived a fulfilling life with Friedreich’s Ataxia (FA) until 80 years old. His nephew Darren wants to spread hope for others.
Uncle Tony was formally diagnosed with FA at 19 years old and in a wheelchair full time by 21. In his mid-teens he had a loss of co-ordination, a wobbly walk and speech problems. He loved football matches and lived life to the full. He was a wonderful and kind man with many friends and will leave a massive gap in our family.
Although his diagnosis was a difficult period for his family, he was very accepting, and proceeded to embrace life with all he had. He decided not to marry but saw my family like his own. My father also had FA and lived a fulfilling life with his family.
Tony worked in accounts for Rolls Royce until his retirement in his 50’s after 25+ years. Afterwards, he travelled the world; Israel, the Mediterranean and Europe were on his list. Throughout his life he visited America five times. He even did abseiling!
He lived with his parents until it became too challenging for them to take care of him and then moved to a nursing home. However, after his parents passed away, Tony wanted independence and stood up for his rights and was able to move back to his family home with full-time carers. He seemed happy and the muscle spasms became less as he lived at home with everything around him. This seemed to significantly help his mental wellbeing.
Tony was involved with Ataxia UK (called Friedreich’s Ataxia Group at the time), raising awareness in Derby, and his friend even ran the London Marathon. He looked forward to what he could do and was always smiling with a cheeky comment! I think it’s partly the reason he lived so long. He was inspirational and a hero to me and the kindest guy I have ever known.
Suzanne Booth, Ataxia Nurse at London Ataxia Centre, said: “The rate of progression and life expectancy varies widely. Individual prognosis depends on factors, including the age of disease onset, severity of symptoms, other illnesses, and lifestyle factors e.g. exercise and weight management. Some with less severe symptoms of FA live until sixties, seventies or eighties, however significant heart disease can reduce life expectancy. Although FA cannot currently be cured, in our ataxia clinics we focus on symptomatic treatments to help reduce the severity of the complications associated with ataxia, and subsequently extend our patients’ life span.”
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