"The nurses helped us breathe again"

Mary’s husband Stephen was diagnosed with motor neuron disease in August 2015. Mary, Stephen and their daughter Rhona describe the comfort and support they’ve been given by Marie Curie Nurses – and why throwing a Blooming Great Tea Party will make a difference to families.

Mary remembers things moving very quickly after Stephen’s diagnosis; "suddenly you have all these people in your home: physiotherapists, and occupational therapists. It was overwhelming at first.

"But we realised we had to be guided by their expertise and it was going to be an evolving journey.

"Stephen was 68 when he was diagnosed with motor neurone disease (MND). He’d had symptoms for about nine or ten months – including tripping up when walking, difficulty managing Scottish country dancing steps, and becoming unsteady with muscle stiffness. His symptoms have progressed far quicker than we expected. He uses an electric wheelchair now and needs round-the-clock care.

How we met

Mary and Steve

"We’ve been married for almost 36 years. We met at a ski club in Glasgow. We’d always been a very outgoing couple and family.

"Stephen was already retired. He’d been a contract manager in the oil industry. I’d only just retired as a community midwife on Deeside, where I’d worked for 20 years. We thought we had that golden window. Our children – Angus (32), Rhona (30), Duncan (27), and Ewan (24) – were all through university and progressing well.

"Ewan, our youngest, is an actor. He’s made a series of videos as a way of showing family and friends what is and what it’s like living with the condition. Our family has always been quite fun and liked comedy, so it came naturally."

Amazing friends

"Marie Curie became involved quite early on. We were referred by the District Nurse shortly after Stephen was diagnosed. Liza, the Marie Curie Nurse is here regularly. Just having her in the house to sit with Stephen helps me to get on with running the house, go to the shops and catch up with friends for coffee.

“It’s been great having Marie Curie. We’ve also had visits from Daisy and Bev. They’re there to help with practical matters and just to chat. They know Stephen well and you don’t have to explain things.

"You really find out who your friends are when something like this happens, and ours have been amazing. They take Stephen out in our adapted car for coffees and lunches.

"We know we wouldn’t be able to have Stephen at home if it wasn’t for all the wonderful care and support we have in place.”

“They provide Mum with a bit of playtime by Dadsitting”

Rhona, Stephen’s daughter, talks about the care and support her family has received from Marie Curie Nurses.

“Mum and Dad did everything together, such as going for walks, Scottish country dancing, cycling, golfing, and skiing to name a few.  

"In more recent months, we’ve found a great deal of comfort in the support provided by Marie Curie.

"They’re able to provide Mum with a bit of playtime by ‘Dadsitting’ for an hour or two – or even a whole day.

"We have the comfort of nurses coming to give us a medical attention any time of the night.

"Every nurse we’ve met has been a true credit to the nursing profession. That’s why we want to raise awareness of what Marie Curie do for us and so many families like ours.”

Stephen, in his own words, on living with MND:

“When MND comes into your life, it’s difficult for it to not take over. My family and friends plans and put in place various events which I can still participate in – theatre, cinema, meals out, holidays away. Marie Curie Nurses are great. They allow my wife ‘days off’ occasionally and they’re good company for me. They know my needs without being told.” 

Mary and Rhona are throwing a Blooming Great Tea Party this June to raise funds for Marie Curie Nurses. Get together with friends, family or colleagues and join in the fun.

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