Category Archives: Multiple Sclerosis

Life as a young carer

Sarah Thomas, 18, started looking after her mother, who has MS, from a very early age, and later became her dad’s carer too.

But she isn’t remotely bitter about missing out on the parts of growing up that others take for granted

Sarah Thomas

Sarah Thomas with her parents, Carole and Ray: ‘I’ve never met a young carer who hasn’t been bullied – we stand out.’ Photograph: David Sillitoe for the Guardian

Ray Thomas chuckles as he recalls the sight of bread appearing to butter itself on the kitchen counter back when his daughter was at preschool. “Sarah couldn’t reach the counter to make sandwiches, so all you’d see is the bread and knife looking as though they were doing it themselves,” he says.

Sarah has been a carer for her mother, Carole, who has multiple sclerosis, since she was small. Then, when she became an adolescent and her father was diagnosed with degenerative bone disease and fibromyalgia, she had to become his carer too. “I’ve never known anything else,” says Sarah, who is now 18 and who continues to do everything from general household chores to helping with medication, providing physical assistance, filling in forms and many other day-to-day jobs.

“One of my earliest memories was being amazed to see my friend’s mum walking. I thought all mums were disabled and all dads worked long hours,” she says, as I talk to her and her parents at their terraced home in Shrewsbury. “But I can’t say I was disappointed when I found out that my mum was different,” she adds, thoughtfully. “It has meant she’s always been around and although it’s hard to say what I’d have been like if I hadn’t cared for her from a young age, I do know I’m very independent – far more so than most of my friends.”

Sundance: Vancouver filmmaker bravely, honestly documents life with multiple sclerosis

Jason DaSilva’s When I Walk makes its debut this week at the 2013 Sundance Film Festival.

By Katherine Monk, Postmedia News January 21, 2013

Sundance: Vancouver filmmaker bravely, honestly documents life with multiple sclerosis

Jason DaSilva’s When I Walk makes its debut this week at the 2013 Sundance Film Festival.

PARK CITY, UTAH — Jason DaSilva always wanted to come back to the Sundance Film Festival, but he never thought he’d do it in a wheelchair.

A graduate of Vancouver’s Emily Carr University and a veteran director of short films, including Olivia’s Puzzle, which was invited to Sundance in 2003, DaSilva’s life took a turn for the tragic when he was diagnosed with primary progressive multiple sclerosis in 2006.

“I was on holiday with my family and I couldn’t get up.”

We actually see this moment in the sand in his film, When I Walk, which will screen at Sundance as part of the documentary premieres section.

At the time, DaSilva was a 25-year-old man in the prime of his life. He had a string of pretty girlfriends, a promising career in movies and a cool apartment in Vancouver’s West Village.

But everything in his life changed. Very quickly.

MS sufferer fights attempts to put her in nursing home

19 December 2012 Last updated at 17:05

MS sufferer fights attempts to put her in nursing home

Elaine Kennedy said if she was moved to a nursing home her daughter would be left homeless

A 42-year-old MS sufferer has said she is shocked at attempts by her health trust to put her into a nursing home.

Elaine Kennedy needs a significant amount of care in her home, but the agency that provides it says they can no longer do it.

Until last week the Bluebird Care agency – based in Coleraine – supplied carers four times a day.

When Elaine tried to get the time they spent with her increased they cancelled altogether.

Elaine said the Northern Health Trust – which has overall responsibility for her care – then suggested she go into a nursing home.