Raising The MND Bar

Cast your mind back a few summers ago and you will undoubtedly remember being part of the charity Ice Bucket Challenge.  But do you remember which charity it helped? And if you do, do you know what MND stands for or were you just aiming to get Dave from accounting an icy cold soaking?

June is MND Awareness month – their most successful campaign to date being the Ice Bucket Challenge which raised millions of pounds – and here in the Small City, Lori Smith, the well kent face behind Eva Lucia is on a mission to raise the profile of this terrible disease that her Dad now lives with.

It is a horrific disease that can affect how you walk, talk, eat, drink and breathe“There’s so little known about Motor Neurone Disease, mainly because so few people are affected – in fact there’s only about 450 people in Scotland diagnosed at any one time.  However, it is a horrific disease that can affect how you walk, talk, eat, drink and breathe – and as you can imagine that changes the life of the person living with it and everyone around them.

It’s also really hard to diagnose – my Dad was about 3 years from his first visit – because there is no definitive test.  Instead doctors have to rule out other conditions.  On top of that, not all symptoms will affect everyone and even if they did, they progress at such different rates that the disease is really difficult to pin down and predict.”

Typically, the disease affects the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.  MND is life-shortening and there is no cure; Stephen Hawking had a very slowly progressing form of the disease and is undoubtedly the most high-profile case to date

As with many things in life, it wasn’t until her Dad was diagnosed that Lori became fully aware of how poorly funded MND research is in the UK.  And because it is so rare, experienced medical professionals are hard to come by, making it less likely that your GP will be fully alerted to your symptons – it’s a vicious circle.

Spurred on by these devastating facts, Lori, her sister Holli, Auntie Tracey and mum Lynn set about organising a fundraiser which saw 300 Perthshire people descend on Crieff Hydro in April this year.  They raised a staggering £21,769.31 and brought the symptons and plight of MND into the minds of all of us. As a wee aside, well done to everyone who donated gifts, who attended on the night and who helped these amazing women reach this phenomenal target.

It’s been a little over 12 months now since Lori's Dad, Dave, was diagnosed, but the lead in period was almost three years - and they were a long three years!

“It started with his hands locking.” Lori explains, “He was in church one day doing the collection and he couldn’t let go of the plate. He’s a painter to trade so we all thought it might be repetitive strain or arthritis.  Multiple appointments, lumber punctures, nerve conduction tests, brain scans and a week in hospital later and eventually the awful truth came.  The neurologist had sown the seed a few months beforehand so we weren’t overly surprised but it is still devastating news when it comes.”

Dave is beginning to come to terms with what his diagnosis means for him, Lynn and their family.  His disease is slower acting but he is aware that it is his voice that will likely go first.  A difficult thought to live with for anyone; he is quicker to tire and needs an earlier finish after a few glasses of red (fewer than ever before!) but he is getting out to support meetings and has met someone else from Perth - Gordon, as featured in the video below - who he now has a connection with.

I think I knew deep down that it was a case of waiting for it to worsen to make sure they didn’t give me a false diagnosis. “Three years of back and forth to the neurologist did mean I wasn’t surprised with the diagnosis - I think I knew deep down that it was a case of waiting for it to worsen to make sure they didn’t give me a false diagnosis.  There were plenty of signs – I had to stop working two years ago because I fell 10 foot from a ladder and broke my ribs and shoulder blade.  I probably should have called an ambulance but I phoned my pal Dave instead – he has a farm nearby and I wanted him to help me clean up the knocked-over paint before I went to A&E!”

So how can you help? The biggest problem with MND is the lack of awareness: a new series of videos launched this week aim to show how this lack of knowledge can lead to hurtful assumptions.  These powerful clips from Gemma, Ruth and Gordon showcase how a little awareness could have helped each of them a huge amount.

Gemma’s mum was pulled into HR at work because of her slurred speech - the assumption was that she was drunk.  When Ruth went to the bank she felt that she was treated differently because her speech was slow and when Gordon's MND meant that he had to use a wheelchair, he found that people would cross the streets of Perth to avoid confronting him.  Check them all out on the MND website here >>>

 MND Awareness Week 2018

Throughout MND Awareness Week we’re asking our supporters to mobilise their followers and help share videos and press stories to the widest possible audience. Tweet @MNDScotland using #MNDaware.

If you, or if anyone you know has been diagnosed you can get help via the MND Scotland website.

You can also pop into Eva Lucia, where you'll find a charity can for any loose change or spare notes.