A Terminal Diagnosis Hasn’t Stopped Me from Staying Fit

This article first appeared on The Telegraph’s website on 28th December 2020. If you would like to see the original article, please click here.

Paul Jameson, 60 is a retired businessman and founder of Aura, a new online platform that provides support for people in their final days, months or years. He lives with his wife Jess, a GP, their son David, 27, and their daughters Jo, 25, and Rosie, 22.

In June 2017, I was given a life expectancy of two years. After months of tests and investigations, I was diagnosed with motor neurone disease (MND), a terminal illness with no known cure. It was a huge shock, I was angry and thought: “Why me?”

I’d played golf for 50 years, was a member of my local tennis club for 20 years and also loved doing mountain treks and cycling challenges. After my diagnosis, I immediately thought of my bucket list. There was
one big challenge left that I had been thinking about – climbing Kilimanjaro. A few glasses of wine with my tennis friends later, we came up with the idea of playing the highest altitude game of tennis ever at the top. We did it in six days in October 2017and raised £150,000 for MND research.

How I work out
My MND started with my mouth area and affected my speech and swallowing. It has now started to affect my lower limbs, too. It manifests as muscle weakness and wastage, stiffness, and balance and co-ordination
problems. Golf has sadly gone, as I can’t swing a club now. Cycling is proving difficult, too – I kept falling off and had a couple of nasty injuries. So I bought a Peloton fixed bike, whichI enjoy as my principal way of keeping fit, two or three times a week. I also do 30 minutes’ stretching and Pilates core exercises every two days and take a daily walk with our two dogs. I still enjoy a couple of sets of tennis each week.

How I eat
I don’t watch what I eat that carefully. I have to select foods that are easy to swallow – typically, porridge for breakfast with soft fruit, omelette for lunch, then risotto for dinner.

My philosophy
MND is an unpredictable disease, some people deteriorate and die quickly, others can live for many years. My progression appears to be slow, so I feel I have a few more good years left. But I do need to prepare for the inevitable, as at any time I could get an infection, have an accident, get breathing complications or even succumb to severe choking.

After I was diagnosed, I wanted to make practical preparations about things like work and finances for my wife and family. I also wanted to share my life story and leave last messages for those closest to me, as well as final wishes. I went online and found very little. So the idea for Aura was born. At its simplest, it’s a place to manage all your end-of-life affairs, leave final wishes, write a life story and leave heartfelt messages to those you love.

I think we need to talk about death to help us live better and not fear
dying. I have already planned my funeral as an end-of-life celebration. I’m going to have a big party in my garden, with a short service full of happy music. I’m then having my ashes made into a firework and, at the end of the ceremony, I want the firework to go off over the house I’ve lived in for more than 20 years.

Having this type of ending will help my family grieve in the knowledge that I was happy to be celebrating the fantastic life I’d had, if not in body then in spirit.

LIFESTYLE ASIDES

Sleep Seven hours
Coffee Three cups
Alcohol Beer, wine – 30 units
Guilty pleasure Sherry trifle that my mum makes
Motivation secret I don’t like failure
Biggest achievement Having a wonderful, loving family
What keeps you going? I love life, treat every day as a bonus and stay positive

Article by Anna Magee, Journalist – The Telegraph