Life with MND on the remote Isle of North Uist

Theresa ‘Ani’ George, who lives on the Scottish Isle of North Uist, was diagnosed with motor neuron disease (MND) in July 2022.  

Ani, who was born in Maine, a US state north of Boston, Massachusetts, moved to North Uist in 2003, so that her partner, who was born on the island, could care for her mother.  

Now, Ani is bravely sharing her story to highlight the difficulties of living on a remote Island with MND, as well as to champion the support of her local community, which led both Ani and South Uist native, Chrissie Laing, who is also living with MND, to raise over £24,000 for MND Scotland.  

Speaking about the first time she felt something was wrong, Ani said: “The first time I really felt something was wrong was when I could not wriggle my toes on my left foot. Over the next few months my ankle began to feel stiff and lost some range of motion. When I walked my foot would slap onto the floor. I was now walking with a limp. I went to the doctor and they thought I has MS but that was ruled out after I had a head scan. 

“A couple of months later, I was beginning to lose my balance a bit and it was thought I may have had a stroke, but an MRI scan showed that was not the case. After all this and a few months had passed I mentioned to the doctor that it felt like my leg was slowly dying and the twitching was getting worse. When she saw the twitching, she mentioned she wondered if it was MND and arranged an appointment with a neurologist.”  

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, talk, swallow or breathe unaided and the average life expectancy is just 18 months from diagnosis. 

Recalling the feeling of being diagnosed with MND, Ani told us: “When I was first given my diagnosis, it was totally devastating. Then to learn that there is no cure and no treatment left me feeling defeated. It was like, that’s it, my life is over. 

“Me and my partner both went four days without eating or sleeping. We weren’t coping well at all and were prescribed some sleeping pills which slowly helped things to get a bit better.  

“I remember being told that I have a slower moving form of MND, but I had no idea what that meant and was then told that basically there’s nothing anyone can do.” 

Aside from the already tremendous challenges that come with being diagnosed with MND, island life means that the practical aspects of day-to-day life are also becoming increasingly more and more difficult.  

As a self-described ‘outdoorsy’ person, Ani once found great enjoyment from being out in nature. Now, due to her reduced mobility, Ani is sadly no longer able to enjoy the pleasures of island life in the way she once could.   

She said: “I used to love being outdoors; going to the beach, hiking, and exploring nature but living in a remote area has become quite challenging for me.  

“I can’t access the beaches or go on hikes anymore, which is obviously really frustrating. Also, I’m a keen photographer and used to love going for walks to photograph the local wildlife but sadly I can’t do that anymore now either. 

“If Chrissie or I had an emergency, I’m not sure what would happen, I think for myself, it started in my leg, so I have an electric wheelchair but most of the roads are single track and that’s really scary. 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 of Ani’s partner’s nieces have set up a GoFundMe page to help raise funds for the cost of a Terrain Hopper, a four-wheel all terrain wheelchair with joystick steering. This wheelchair will give Ani access to all her favorite places again and you can help Ani get back out to her favourite places, including the beach, hills, water and more, by making a donation here.  

Thanking MND Scotland for the support she has received, Ani said: “Chrissie and me both feel that MND Scotland has been there for us in countless ways, from helping with finances and benefits, to equipment like stairlifts, recline chairs, electric wheelchairs and holiday funds.  

“We honestly can’t thank everyone at MND Scotland enough for their support. I know both Chrissie and I have so, so much gratitude for the charity. I can’t imagine what life would be like for us without them!” 

To give back to the charity, Ani and Chrissie organised various fundraising events including a Whist drive (a community game night) and an April 8 raffle fundraiser, with Ani also auctioning a handmade chess set crafted from shed red deer antlers.   

Along with supporting Chrissie and Ani’s fundraising events, the local community also kindly donated funds raised themselves, including a local family who donated £887 from a funeral collection and a pottery gallery that donated over £500 raised through ticket sales.  

Thanking the local community for their incredible support, Ani said: “The support from the people of Uist has been overwhelming. It’s been really emotional to see so many people come out to support both Chrissie and myself and we are both extremely grateful to everyone who donated and helped to raise funds in any way!” 

Chrissie added: “We could have never expected to raise so much money. It’s honestly hard to find the words to thank everyone properly. We really do appreciate everyone’s support and generosity more than we can say.”  

Thanking both Ani and Chrissie for their incredible fundraising success, MND Scotland CEO, Rachel Maitland said: “It’s wonderful to learn about both Ani and Chrissie’s amazing fundraising success. £24,000 is a phenomenal amount and we cannot thank Ani, Chrissie and the Uist community enough for their outstanding effort.  

“I’m extremely glad to hear about how we have been able to provide vital support to Chrissie and Ani on the islands and thanks to their incredible fundraising efforts, and the generosity of the local community, we can continue to be a helping hand of support to people living in Scotland with MND. Thank you both for making your time count in such an exceptional way!” 

You can help MND Scotland to support people like Ani and Chrissie by making a donation here. For more ways to support our work, please visit us here.