Sheree, the youngest person from the Highlands currently living with MND, first noticed something was wrong about a year and a half ago when she started to lose strength in her hands.
She said, “I left it and left it, then eventually I started dropping things and what not. So I went to the doctors and got referred to the neurologist. It took about 16 months of tests for them to figure out what was going on.
“I actually found out early because I’m quite stubborn. My neurology appointment had been brought forward by three weeks and I thought, ‘you know something’s not right here’. So I contacted my doctor and managed to get hold of the letter. I was told not to read it but of course I did.
“I had heard of MND before because during my course at Uni we actually had a lecture from Andrew Bethell and he’s now my MND nurse. Sadly he remembered me!” She laughed. “But MND had never been mentioned as a possibility by any of my doctors before, so that was the first time it had come up. Being so young I wasn’t the typical presentation of MND, so they first ruled out MS, ME, lyme disease, structural problems in my neck and other illnesses that mimic MND.
“It was a shock but I think the fact that I finally had an answer for what was going on was good because I didn’t have an answer for so long, and that was really difficult – the constant not knowing.
“My mum was with me when I read the letter so she knew right away. Both my parents took it worse than I did. But they're coping with it better now.
“I think because of my background, working in care for years, I’ve just taken it on the head and am taking it one day at a time.”
The student nurse is currently studying at the University of Stirling, and is completing her final placement in her hometown of Inverness. Sheree, who now lives in the Black Isle, is determined not to let her MND get in the way of her studying or her career.
She said, “Initially I wanted to specialise in orthopaedics but I’m not allowed to do ward based work anymore because of my hands – I can’t do moving and handling anymore. So there are lots of skills I’ve now lost because of MND. It’s been really crappy because I want to do more to help the patients in my care.
“When I was diagnosed in March I didn’t have long to go to complete my course anyway. I had two exams coming up two weeks after my diagnosis and luckily I passed them with flying colours, just to prove a point.
“People keep telling me I’m an inspiration – but I don’t really like that word. Everyone likes to tell me how great I’m doing and what an inspiration I am, but I think it’s just because I’m still doing my course. I haven’t given in – it’s their way of saying good on ye!
“At the moment I think about the future a lot. I’m just about to qualify as a nurse but I’m having difficulty finding somewhere to work that’s a) going to be suitable and b) will actually take me. I’ve got quite a bit of fear about the stigma of having a disability, and my problem is only going to get worse. But I still want to use my skills and my knowledge to help other people. You never know there might a nurse out there now who’s reading this and willing to give me a job!”
For MND Action Week 2019, charity MND Scotland is calling on you to imagine what it would be like to have MND and to take action to end MND forever.
“Obviously because I’m so young and I’ve had so much taken away from me already. I played guitar for 16 years and achieved a Bachelor of Arts degree in Music at 19 years old. I haven’t played in over a year which is heart-breaking.
“Literally my condition is on my mind every second of every day. It’s always there. I just try to get on with things and stay busy. I think I’ll find it hard when I can’t keep as busy.
“Within the past year it’s progressed so much – I can’t put gloves on and I struggle with a lot of daily tasks. Getting ready, changing my clothes, doing my hair, preparing and eating meals are just a few and these are only going to get harder over time. I’ve got three fingers which don’t extend at all anymore, they’re just stuck and don’t move. The muscle wasting is now really quite noticeable up into shoulder.
“I think people need to be much more aware about what this illness is and what it does. The amount of people that I’ve spoken to who say ‘Oh well you can get some tablets for that’ or ‘You just need a bit of rest’.
"Then you tell them there’s no cure, and you have to explain it’s a terminal illness and that I won’t get any better, it’ll just get worse, and they still don’t really understand.
“People shy away from talking about it but when the topic comes up, people do get quite interested in finding out about it and how it all started. In my line of work and as a student nurse I’ve said to everyone that if they have questions to just ask, I don’t care how stupid they might sound. I’m happy to talk about it – as they say knowledge is power.
"During MND Action Week I'm going to be bucket collecting at Inverness train station and I've also managed to get the Ness Bridge to light up blue for MND. I hope you'll all join us and take action this week too!”
For MND Action Week we’re calling on the nation to join us and help us to not just imagine a world without MND, but to make it a reality. To donate £3 to MND Scotland text IMAGINE to 70660 or visit www.mndscotland.org.uk/imagine.