Former Royal Air Force specialist shares her diagnosis with MND

A former RAF communication systems specialist, Lesley Hillhouse (56), from Moodiesburn in North Lanarkshire, is sharing her diagnosis of Motor Neurone Disease (MND) to raise awareness of the illness and of the help and support MND Scotland can provide.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

Lesley, originally from Ayr, moved to Moodiesburn in 2007 to be closer to her job in Paisley. Working in admin for a construction company for 20 years, Lesley previously worked for the Royal Air Force for 17 years, managing their communications systems.  

Lesley was diagnosed with MND in October 2015, but she first noticed that something was wrong when she was running a 10k race in 2010.

She said: “I hadn’t been running for a while and then started training for a 10k in the May. I thought the reason my legs were stiff was because of all the training.

“But then even a while after the run I started to lose my balance and fall over. This would happen in the house, or if I’d step up on a chair to reach something I wouldn’t be able to push myself up. The doctor gave me pain killers to start with but then that same year I had a really bad fall when I was jogging. I got quite a fright and knew my walking just wasn’t what it was, so went back to the doctors.”

In 2011, Lesley started having tests done. She was referred to a rheumatologist, orthopaedics and finally neurology. Still they didn’t know what was causing her to fall over.

Then in 2014 Lesley began having issues with her speech.

Lesley said: “I noticed my speech was a bit odd at times and I was still having tests done but nothing was coming back. In 2015 I got a lumbar puncture and finally in the October they diagnosed me with MND.

“I hadn’t heard of MND before really. I knew it was what Stephen Hawking had but that was it. I didn’t know anyone else who had it.

“I was really shocked because I was always fairly fit and healthy, I used to play sports like netball in the RAF, so I couldn’t understand why I got it. No one in the family had ever had it but I know now it doesn’t have to run in the family.

“Looking back now it was very hard to take. It’s been a journey coming to terms with the diagnosis but it is what it is, so you just have to keep going. I hope that because I was a healthy person and because I try to stay positive, this will help me.”

Lesley lives alone and has always led a very independent life, however decided to retire in 2017 when she was just 55.

“I was too young to retire and didn’t really want to but it was getting too much; the early mornings, the driving and the days felt longer. I didn’t want to wear myself out.

“I still try to do as much as I can myself but I am also not afraid to ask for help when I need it. My friend Martin lives close by and my neighbour Anne is on hand if I need her.

“Martin comes by to do the shopping with me, but we used to do this anyway, help in the garden or take the bin out. So I have lots of support and recently got a cleaner which will be good, because I can’t manoeuvre the hoover anymore.

“I’m still independent to a point. Last year I went to visit my nephew in Australia and travelled alone both ways. He’s been out there for two years and I wanted to go while I was still able. It was great getting around Perth. I hired a scooter and everything was so easy – I love being in the sun too.”

On her way home from Australia Lesley had a bad fall, meaning she now has to use a walking frame all of the time.

“It was a fantastic trip and I was there for a month, but on my way home I fell getting on the plane at Dubai and fractured my femur. I had to stay in Dubai for two weeks to have an operation and since then I’ve had to use a walking frame to get around the house. But I’m still proud I travelled over and back by myself.

“I’ve travelled down to London since then because I wanted to get back on the horse. I went to South Hampton and met up with my old RAF friends – that was a great laugh!

“It is hard to take a step back when you’re so used to working and being independent, but I try to keep reasonably busy. I love reading, crosswords, and sometimes it’s just nice to chill out and watch TV, especially in this cold weather. Once it starts to get nice again I’ll get out more for some fresh air.”

Lesley went on to praise the charity MND Scotland for their ongoing support: “I go to the MND Scotland support group in Motherwell which is really good. At the beginning I thought – oh that’s not for me but it’s actually really nice to meet other sufferers of MND in the area and we put the world to rest.

“I also use the charity’s complementary therapy service. My therapist, Sharon, is amazing and we’ve struck up a real friendship so I get a lot out of it in that way; not just the treatment.”

In the face of her progressing challenges with MND, Lesley remains positive and hopeful for a cure.

“You have to have hope. I know it’s not always a good outcome but I do believe you need to have hope and faith. It would be amazing if they found a drug or a cure for the future.

“It’s been 9 years since my MND started so I look at that as positive, that it’s a slow progressing kind of MND. Despite everything I think I’m doing well and sheer determination will keep me going.”