Councillor Lorraine Cameron, provost of Renfrewshire, shares her personal connection to motor neurone disease (MND)

Councillor Cameron discusses the challenges she faced when she learned that her mother was diagnosed with the condition. She also talks about her fundraising efforts for MND Scotland, through which she has raised over £34,000 during her term as provost to help support other families affected by MND.

Where did you grow up and where do you live now?

I grew up in Paisley and still live here now. I was born in Johnstone and educated in Renfrew, so I suppose you could say I am a Renfrewshire ‘all-rounder’!

What is your connection with MND?

My beautiful mum, Eileen, was diagnosed in 2009 with MND. It took a long time for her to be diagnosed. Looking back, I reckon she had it for at least a couple of years before diagnosis. 

Can you tell us more about the person with MND and your relationship?

My mother was born Eileen Fadian – to become Eileen Connell when she married my father, John. They were married young, when she was only 18, and became mum and dad to me in 1962. She went on to have my sister, also Eileen, and brother Ian. 

She was a great mum – very liberal for her generation and wildly funny! She was young-minded, fashionable, beautiful and very well-liked. I know most people say nice things about folk when they are no longer here, but she really was popular and kind and people in our community felt her death deeply. 

Her funeral mass was in St Peters Church in Glenburn, and it was standing room only in that big chapel.  That told us that we had probably underestimated her impact on the world. We knew she affected people's lives with her big heart, compassionate personality and empathy for those who needed help, but we just weren’t prepared for the outpouring of love for her.

My mum and I were so close. There was barely a day that went by without us speaking. She was always a friend of my friends, came on nights out with us and even spent a few holidays with ‘the girls’. Her age was never an issue. 

My friends took to her like she was one of them and she joined in the fun – being able to adapt and act like she was 20 years younger! I sometimes envied her staying power! However, she could switch to ‘mum’ mode whenever needed, and without hesitation!

About four weeks after her diagnosis, I realised she was not coping. I asked her if she wanted to come and live with me – outlining that she would be with me to the end. She didn’t need to be asked twice, and our relationship made it a very easy move. 

She also got on extremely well with my husband, who honed his cooking skills by creating special dishes for her that she could eat easily as her MND progressed, and before she had to have a feeding tube fitted. 

My two daughters, who were still living at home, moved out of the house and into mum's apartment. It was a huge sacrifice that I am only now realising impacted all of us It was a loss that I didn’t have time to deal with as I had to dive into preparing the house for someone with a physical disability.

Although it had a huge impact on us, a lot of positives also came out of it. I got to spend her final two years with her, chatting into the small hours, taking advantage of the times she was in a ‘good’ place, and just loving her and trying to take her fear away by occupying her mind with other things.

She loved us dearly, and we loved her more. She also had seven grandchildren and two great-grandchildren and had more than enough love and fun for all of them.

Can you tell us more about the fundraising event you organised in support of MND Scotland?

I organised a ‘hoedown’. I decided on that theme after visiting a local farm shop in a place called Barnhill Farm. I was with my daughter and thought immediately it would make a fantastic event venue. 

The barn was huge and was full of old, rustic tables, and I just sensed that the atmosphere would be amazing when filled with people! I kept the ticket prices as low as I could and didn’t have a licenced bar – it was bring your own bottle. 

To this, add a fantastic band, a line dance tutorial, and a bucking bronco, and you have a wildly successful hoedown! 

Of course, there are no successful events without a fab team, and I do have the most amazing support staff who do all of the heavy lifting! 

I should add that the team are the same council staff members who picked me up hugged me, and listened to me, during my mum's illness. They are well aware of just how much it means to me, and now, it also means so much to them.

What made you choose MND Scotland?

When my mum was being cared for during her illness, I realised it took a huge team to give her the attention she needed. 

From the MND nurses to the palliative care she received at the day centre at our local hospice, Accord – all of them were equally as important. 

She often worried about any of her children getting MND and wanted us to do what we could to raise money, and awareness, for the condition. She took part in several fundraising events before she passed, and also made a video for MND Scotland to be shown at the 2010 Cornflower Ball. She had incredible courage – but did it all in the hope that it would help someone else.

This is why I do what I can. During my term as provost of Renfrewshire, I have raised approximately £34,000 for MND Scotland.

Anything else you would like to add?

My heartfelt thanks to everyone at MND Scotland, past and present. Without you, I don’t know what families would do. 

It's very easy to say thank you, but often it feels like it's not enough, and that’s where people can become involved in fundraising. 

It’s an extremely satisfying, rewarding way of giving back after you’ve watched someone you love to deteriorate with MND and felt that helplessness. Go and organise an event. It does something to you that makes you feel as if you are putting the pieces back together and honouring your loved one at the same time. 

Remember them with love and laughter just as they would want us to.

For more information, visit mndscotland.org.uk.