Phil is 67 from Winkleigh, Devon. He’s a grandfather and husband who took retirement early due to having episodic ataxia: a type of ataxia which can attack at any time. He took part in our summer Exeter campaign.
Phil welcomes us into his house as Penny, his wife, prepares Devon cream teas. Photos of Phil sailing and his grandchildren adorn the walls, and the colour of the trees and shrubs from his back garden peak through the conservatory doors. “I used to enjoy sailing,” he tells us, but with the risk of an ataxic attack he knows it’s unsafe to continue. The fatigue from his ataxia also restricts what he’s able to do in the garden, which has been another loss.
Phil is walking well today, I note, as we leave the house for the short walk to the village: he’s left his Nordic poles behind. Sometimes, his ataxic symptoms aren’t visible – at others, they take away his mobility, or give the impression of him being drunk. This is the unpredictable nature of episodic ataxia. It’s a genetic condition, as Phil’s father and siblings also suffered from unsteady gait and other symptoms to varying degrees, though never sought a diagnosis.
Phil often uses his Nordic poles for extra support while walking, and gets a few “stupid comments” from the public when in town. He keeps his responses light and humorous, but says to us that “if you find a stick or Nordic poles help, then go for them! No use being proud.”
Getting a Diagnosis
More than the public’s reactions to his ataxia, Phil has found the lack of awareness in the medical world problematic. In 2002, he was becoming increasingly unsteady. His speech began to slur, and his involuntary eye movements had worsened considerably. These worrying symptoms increased when he was tired in the mornings or evenings, lessening his productivity at work. Eventually they led to early retirement.
It took years of appointments with his GP, tests and neurologist visits before he was given a diagnosis. When they did finally diagnose him, a doctor said: “Oh well that’s it, nothing we can do; no cure for that.”
Not wanting to accept the diagnosis passively, Phil and Penny undertook some detective work into ataxia themselves. Was the initial bleak analysis from the doctor correct, or were there treatments on the horizon?
With help from his GP and making an appeal for funding, he eventually spent four nights at Frenchay Hospital Neurology department at Bristol, and subsequently underwent five nights of observation at the National Hospital for Neurology and Neurosurgery. It was the first time they had ever seen someone with Phil’s type of ataxia.
Research and improvements in healthcare
It was in this way that Phil and Penny discovered Ataxia UK. Our accredited Specialist Ataxia Centres have top neurologists from all over Europe, who conduct research into the condition and hope to develop treatments and cures whilst caring for their patients. Phil also discovered our support network and got involved with the South West Branch, eventually becoming a Trustee for the charity itself.
We don’t believe it should have taken Phil and Penny this long to understand Phil’s condition; nor should they have had to discover for themselves what the future of ataxia can look like. With our healthcare professionals medical registry, we try to challenge this lack of awareness in the medical world. Our Ataxia Training day in Exeter is part of this campaign, and took place on 7 July 2017 at the Met Office, who generously hosted the event for free.
Thank you to the Met Office and everyone who supported this campaign, and improving the lives of people with ataxia in the South West.