Janet fights back after ‘heartbreak’
SHE’S HITTING OUT FOLLOWING
A WOMAN is fighting back against the impact on her day-to-day life of being diagnosed with Parkinson’s disease when she was just 47.
Janet Barnes, now 49, was “heartbroken” when she found out she had the neurological condition and said there were symptoms that were hard for other people to notice.
She said some people might feel “shame” for having the disease but explained “you just have to adapt”.
Mrs Barnes, of Canal Side, Beeston, said: “It’s relatively rare to be diagnosed below 50.
“Especially being female as well. “You’re told when you’re diagnosed, it hits you very hard obviously, that there’s medicine that you’ll be taking for the rest of your life – 50 percent medicine and 50 percent exercise is the way to maintain and manage the condition.
“You’re told very early on a positive attitude and exercise are really key.
“I’d had symptoms for a while and most people when they’re diagnosed have had symptoms for a good while.
“I was getting slower, my movements were getting slower, I was doing a bit of running but I was getting cramp in my toes, my handwriting was getting very bad, I had a little bit of a tremor that I was noticing.
“Just really small changes in the way you behave that are hard for anybody else to recognise but you see it yourself.
“My speech was getting quieter.” The charity worker and artist said she thought her life was “over” when she was diagnosed – but added: “You just have to adapt and do other things and do what you can do.”
On how her life is affected, Mrs Barnes, who is married to Simon, 53, said: “I get very tired, I am on medication throughout the day. I have insomnia, I have slowness of movement, I am doing loads of exercise and loads of boxing training.
“But I get pains and aches I can’t describe that are ongoing. There are speech issues – when I’m tired I can’t speak loudly or define words.
“I must stress it’s different for everybody. There’s a range of symptoms, about 50 symptoms registered, but everybody has different
DISEASE DIAGNOSIS BLOW AT 47
ones and different combinations. For me it’s aches, pains, slowness of movement – they’re the main things.
“It’s a matter of managing and doing the best you can to slow things dow. There’s some evidence that exercise really helps with that as well as taking the right medicines.
“It’s a progressive illness. It’s about slowing it down, doing everything you can to manage it.”
Since she was diagnosed she has raised more than £10,000 for charity through various challenges, including a bike ride from London to Paris.
She wants to “change perceptions” and raise money for a cure and better medicines.
Her latest idea is to box for 12 hours with her friend Caroline Bate, who lives in Yorkshire, with the support of Maxine and Christian Smith from the Resurrection Mixed Martial Arts Academy in Sutton-in-ashfield.
Mrs Barnes, who is raising money for Parkinson’s UK, said: “We are going to take it in turns to do boxing on the pads with Christian and Maxine.
“They’re going to be holding the pads and shouting to us and we’re going to be boxing in the ring against them.
“We are going to go into shadow boxing and box with people on Zoom so people can join for the 12 hours and join us for as long as they want. We are going to rotate with little breaks in between to refuel and rest.”
It will take place when coronavirus restrictions allow.
Ann Rowe, head of regional fundraising at Parkinson’s UK, said: “With more than 40 potential symptoms, Parkinson’s can devastate lives.
“We’ve made huge breakthroughs in the last 50 years, but there is still no cure and current treatments are not good enough.
“The money raised will help us drive forward the groundbreaking research we need to transform the lives of people affected by the condition.”
You can donate at justgiving. com/fundraising/janet-barnes10