"At the end of the day though, I’ve got a very positive attitude in life": Paul's story

I was born on the 11th of December 1953 at a time when there was little known about cystic fibrosis. I was the second child in the family to have cystic fibrosis, and my older brother Val sadly passed away aged 8 months in 1952. 

My mum, Betty, instantly realised when I was born that I had the same thing my brother had, but it wasn’t known as ‘cystic fibrosis’ at the time. She left no stone unturned and wrote to doctors across the world in America and Australia, and in the UK, to Harley Street. Their responses offered no medical advice and instead only sympathy and prayers – I still have some of these letters.

My father Val sadly passed away in 1961, leaving my mum to bring me up on her own. She had a shop and was trying to make a good living whilst always taking care of me. In the early 1960s, with the help of other mothers, Betty was a cornerstone in Scotland to setting up a branch of Cystic Fibrosis Trust. This included opening a charity shop to help raise funds and awareness for what was, at the time, a condition not many had even heard of. Betty got a certificate for all her work in this to celebrate the Trust’s silver jubilee.

As a child, I was quite well, all the way up to when I was about 20. In those days, all the people with CF still met up with one another, but one by one they were slowly fading. By the time I was 18, mostly everyone I knew from the CF clinic and hospital had sadly passed away. I felt like the last man standing and found it quite difficult mentally. I felt like I wasn’t supposed to live that long.

When I passed my driving test, my mum bought me a car so I didn’t have to use public transport, keeping me from catching colds, especially at winter.

When I was younger there was no such thing as adult CF patients. There were no adult clinics. I had to go to the children’s clinics. I’d go and sit in those wee tiny chairs, age 19. Then, in the mid ‘70s, the first adult clinic was started in Glasgow by Dr Brian Stack and it was amazing. If I had a problem I could phone him at home any time of day or night.

At 21 I started having problems with my bowels and having blockages and these problem persisted into my late 50s. I had two surgeries getting parts of my bowel removed. That was how they dealt with it then, and it took a long time to recover. I was working but I had to take about six months off.

My lung problems impacted me most during the mid-2000s, after quite a bad car crash, where I broke a number of ribs. My recovery was helped by IVs, hospital stays and recuperation at home, though it took two years to fully recover. It was at this point that I was also diagnosed with type 1 diabetes.

I’ve got a very positive outlook on my life. I went to my first gig in 1970 and still go to gigs. I saw everyone that really matters. I went to see Holly Johnson of Frankie Goes to Hollywood last year. I also love football and I love cars. I am a big music lover.

Paul’s wife Ann Marie said: “When people meet Paul, they are always amazed at his positive outlook on life and tremendous sense of humour, which has at times led him into some trouble!”

I retired at 51, taking voluntary redundancy after working for the Glasgow City Council Housing Department for 32 years. How long I have to live has always been in the back of my mind. After that, I was an extra on TV shows. I was in River City and got to sit in the bar in a few episodes. 

In the ‘80s I went to China and Singapore and since then have been all round the world. Not counting Covid I always try and go away for the winter too. We went to Tenerife in December and came back in February because winter in Glasgow is hard. We don’t do anything wild – you don’t when you’re 70! It’s just nice to be warm.

I’ve been married to my wife Ann Marie for 32 years this year. I’m so indebted to the two most important people throughout my life - my mother and Ann Marie. Between them have supported me, nurtured me, nursed me, laughed with me and cried with me. 

Ann Marie said: “I met Paul through work and didn’t anything about his condition. When we started going out and he became ill, I had to read up and learn about cystic fibrosis. 

“When we first met he just took Creon and now there’s been tremendous advances. I’ve been trained to give him IVs at home which is a great benefit. Since 2019 he hasn’t had any IVs at all. Kaftrio coming along has helped a lot, and we’re very careful. Even prior to Covid we would wear masks and do a lot of handwashing. We’re very lucky.”

It can be scary and depressing when you have CF so I hope my story can show that some people with CF can live a long, happy and fulfilling life. I am indebted to the doctors, nurses and everyone involved with my care through the years.

At the end of the day though, I’ve got a very positive attitude in life, I like fun, I’ve always got a funny story! Either that or I’ll make it up.