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‘The support has been overwhelming’: What it’s like to live with MND in the Outer Hebrides

"When I was first given my diagnosis, it was totally devastating," Ani says. "It was like, that’s it, my life is over."

A woman using an electric wheelchair smiles in a garden with a loch in the background.
Theresa 'Ani' George has worked to raise money to help other people in Scotland living with MND. Photo supplied by: MND Scotland.

Theresa ‘Ani’ George, who lives on North Uist, reflects on the way MND has affected her life.

Ani moved to Uist from the American state of Maine 20 years ago to live with her partner.

Island life suited her perfectly. A keen photographer, she used to love being outdoors; “going to the beach, hiking, and exploring nature”.

But a couple of years ago she began noticing worrying symptoms.

“The first time I really felt something was wrong was when I could not wriggle my toes on my left foot,” she says.

This progressed to a limp, and then a loss of balance. At first, she says, “it was thought I may have had a stroke”.

But after a doctor arranged an appointment with a neurologist, Ani was diagnosed with Motor Neurone Disease (MND).

MND is a progressive neurological illness that stops signals from the brain from reaching the muscles.

It’s a terminal illness, with an average life expectancy of just 18 months from diagnosis.

‘Totally devastating’

“When I was first given my diagnosis, it was totally devastating,” Ani says. “It was like, that’s it, my life is over.

“Me and my partner both went four days without eating or sleeping.”

Suddenly, she could no longer do many of the things she loved.

“I can’t access the beaches or go on hikes anymore, which is obviously really frustrating,” she says.

Living in Uist also leads to extra challenges for those with MND.

For instance, using a wheelchair on single track roads can be “really scary”, Ani says.

“There’s hardly any pavements and although I love it here, it’s hard to find a place where I can get out and about in my wheelchair.”

Two smiling women wearing 'MND Scotland' shirts hold a check from a fundraising event.
Ani and Chrissie raised over £20,000 for MND Scotland earlier this year. Photo provided by: Theresa ‘Ani’ George

Ani’s family has set up a GoFundMe for an all-terrain wheelchair that would allow her more freedom to visit her favourite places on the island.

The fundraiser has already raised almost £5,000. And it’s not the first time Uist’s community has come together to support Ani and others living with MND.

Ani and her friend Chrissie Laing, who also has MND, organised a fundraising event in April that raised £24,000 for the charity MND Scotland.

“The support from the people of Uist has been overwhelming,” Ani says.

“We could have never expected to raise so much money,” Chrissie adds. “It’s honestly hard to find the words to thank everyone properly.”

‘MND Scotland has been there for us in countless ways’

For Ani and Chrissie, fundraising was a way to give back to the charity that has supported them since their diagnoses.

“Chrissie and me both feel that MND Scotland has been there for us in countless ways,” Ani says, “from helping with finances and benefits, to equipment like stairlifts, recline chairs, electric wheelchairs and holiday funds.”

“I can’t imagine what life would be like for us without them!”

Rachel Maitland, MND Scotland’s Chief Executive, praised Ani and Chrissie’s “incredible fundraising efforts” and “the generosity of the local community”.

The support, she says, will help MND Scotland “continue to be a helping hand of support to people living in Scotland with MND”.

More local reporting from the Western Isles:

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