A once fit-and-active man says he cannot hug his family and has lost his freedom after being diagnosed with the same rare illness as singer Celine Dion.
Dominic Alderson used to play golf, coach football and work out at the gym five or six times a week before being diagnosed with Stiff Person Syndrome (SPS), a condition that affects one-in-a-million people.
But the 49-year-old now needs a stick just to get around his own home and is unable to do simple everyday tasks like driving, cooking and walking the family dog.
He says he has to avoid entering shops as the artificial lighting in some retail stores can spark an attack of bodily spasms.
Million-selling artist Celine Dion announced earlier this month that she suffers from SPS.
The rare, progressive neurological disorder causes stiff muscles in the torso, arms, and legs.
It can also lead to a higher sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.
The syndrome caused the Canadian singer to postpone dates for her European tour next year.
Father-of-two Dominic said the condition was likely to make it “very hard” for the My Heart Will Go On singer to perform live.
The battery operator said he thought it was "great" that a household name like Dion had opened up about the syndrome and helped to raise the profile of sufferers.
"I was reading about Celine Dion and how bad it must be for her, especially her being a performer,” he said.
"We all know performing live will be very, very hard for her.
"I am sure with the hard-working woman she is that she will be back in the studio recording when she gets familiar with the condition."
Dominic’s own journey to being diagnosed started in April last year when he started suffering from "horrific" spasms.
Before his diagnosis, the Devon resident lived a "normal, healthy life" with his wife, Leann, 45, a social worker, and two children - Rebecah, 16, and Harry, 15.
He initially put the uncontrollable spasms down to not being able to attend the gym during the coronavirus lockdowns.
But after a horrible episode where his muscles would not stop reverberating when he got into bed after a night shift, he decided to book in to see his doctor.
The West Country man feared it was Covid at first, but his GP sent him straight for tests at North Devon District Hospital in Barnstaple, Devon.
Despite its rarity, the patient was lucky that the neurologist who saw him had seen a similar case before during their career, meaning Dominic had an early diagnosis of SPS.
The disease has completely changed his life, meaning he can no longer do the daily activities he was used to doing beforehand.
He said there are good days but that, during his worst episodes, he is “spasming all day”.
"I have fallen down the stairs, fallen in the kitchen. It is not just the spasms — there is a rigidity that comes with it,” Dominic said.
"My legs lock, my top thighs will be trying to push outwards, and my calf will be trying to push inwards.
"I am at a higher risk of falling over and there is a 40% chance of me being in a wheelchair.
"I already use a stick around the house, I use a pole to go outside too and that helps.
"I can't go into shops because of the artificial lighting, any artificial lighting will set me up in spasms.
"I can't hug my wife or children, even if someone brushes against me - I start to spasm.
"I have lost all my freedoms. It is my wife that gets it all in the neck, she does a lot for me and so do my kids."
After a second episode during which he was hospitalised in Exeter, doctors put Dominic on medications, including muscle relaxants, steroids and immunosuppressants, to help stop his uncontrollable spasming.
Dominic said: "I am married with kids. For me, what was going through my head, I thought I was going into hospital with something, and they would cure me.
"I was a fit person. I would walk my dogs, go to the gym, and I used to play golf.
"I was a football coach. I was very active. It was a shock.”
