Jo shares her MND diagnosis aged 29

Always fit and healthy, Jo Knowlton was left stunned last year when she diagnosed with motor neurone disease (MND) at just 29 years old. Now in the lead up to MND Action Week (15^th – 21^st June) she is sharing her story to raise vital awareness of the terminal illness.

Jo (now 30), who lives in Dundee, works in Forensic services for the Scottish Police Authority. She first noticed something was wrong in February 2019 while taking a car out for a test drive.

Jo said, “I hadn’t driven for years and was finally in the position to afford a car of my own. I sat in the driving seat with the salesman next to me and my mum in the back, both waiting for me to start the car. I sent the message to my hand to turn the key and nothing happened. I put a bit more effort in and the engine started. I thought nothing of it, I hadn’t driven for a while, maybe the key was stiff.

“By March 2019 I noticed that I couldn’t close my fingers together and was starting to struggle with the handbrake on my car, as well as buttons and zips, so I decided to visit my GP. I felt like a bit of a hypochondriac to be honest. After showing her my hands she thought it might be repetitive strain injury or a trapped nerve. I was put on a waiting list to see a hand specialist.

“I had various tests over the summer months and was admitted to hospital in August 2019. I’d never been in hospital – I’ve never had more than a wisdom tooth removed. I’ve always been healthy and active so I didn’t know what to expect from my hospital stay.

“It was difficult because all the tests they did came back healthy. I didn’t know that that was actually a bad thing. I thought that it was good but couldn’t understand why no one would tell me what it meant. They kept testing me and ruling things out and I didn’t know what that left us with.

“I was preparing to work hard to get better no matter what it was. I thought that worst case scenario is I have MS, so I was mentally preparing myself for that too. I didn’t read about MND at all because I assumed it wouldn’t be relevant to me because I’m too young.”

Recalling the day she was given the news, Jo said, “I was waiting in the hospital for my results. The doctors were doing their morning rounds but no one would come near me.  The neurologist eventually came and walked me to a side room. I saw a tv screen so I figured he was about to show me something on my xray or MRI scan. He sat me down and said ‘it’s not good news I’m afraid, you have motor neurone disease’.

“I had heard of MND but I don’t think I fully understood how devastating it is or what it does to the body. My initial reaction was ‘so what now, what treatment do I start, what do we need to do next?’ I had no idea it was terminal, without available treatment or a cure. I was devastated. I felt fine and I didn’t understand how this could be the conclusion. I thought I had my whole life ahead of me but now I was faced with being told I had a terminal illness aged 29.

“My family have been devastated by my diagnosis, my mum especially. I’m an only child from a single parent family. Mum and I are very close. She’s been a carer in the community for nearly 30  years and has cared for people with MND. She knows what to expect which I think makes it more difficult for her. She’s seen the devastating effects it has on the body first-hand.”

Jo is the youngest person in the Dundee and Tayside area currently living with MND. Since her diagnosis, symptoms have progressed rapidly but in the face of a heartbreaking diagnosis, Jo has been determined to stay positive and live life as normally as possible, but lockdown has made this all the more difficult.

“Progression has been quick and life has changed dramatically. I’ve always been a keen gym goer and walker. I used to be at the gym 4-5 times a week or more. I was up at 5am, a lap of the park with my dog Chino, then the gym, then walk to work and back, then another lap of the park. I really miss just walking for miles and miles with my dog. Some weeks I would have done 100,000 steps. I now struggle to walk to my car.

“I’ve gone from lifting 10kg dumbbells to finding a glass of water heavy. Sometimes I feel like I’m breaking a sweat just to get one sock on! I’ve always been fiercely independent so it’s difficult having to rely on other people and ask for help with everyday tasks.

“I’m still working and hope to continue working as long as possible. I really enjoy my job and I couldn’t ask for more support from my colleagues. They’ve been flexible with my hours and are making the work environment more accessible for me as my needs change.

“I’ve tried to stay positive and take opportunities to make memories with my family and friends, but that’s all had to stop since Covid-19. I’m stuck indoors and I can’t get this time back. My mobility has deteriorated since lockdown and due to the nature of my job I’m not able to work from home. This leaves me too much time with my own thoughts on MND and my future. I’m single and live alone with my dog. I don’t have any children but would still like to have a family one day. 

“I have always lived within my means and I’ve never gone on holidays if I couldn’t afford it, so I hadn’t been abroad in about five years. Now I have a bucket list and with the help of MND Scotland I completed my first bucket list trip to Iceland in December 2019. I look forward to planning my next trip once it’s safe to travel again – a Caribbean or Mediterranean cruise is first on the list!

“Right now I just want to get on with life, stay as independent as I can, make memories and live well. I’m trying to find a bungalow which will be more suitable for my needs because at the moment I can’t leave my flat without assistance because of the steps. I can’t wait to just iron out as many of the challenges I’m presented with as possible and just try and enjoy life.”

Now for MND Action Week, Jo is sharing her story to raise awareness of the disease and to call for more funding to find a cure.

Jo continued, “I want to raise awareness so people know that MND doesn’t just happen to older people. It happens to young healthy people too. No one knows what causes it. It can be genetic but it can also be sporadic. That’s what mine is, incredibly bad luck.

“I was scheduled to start the MND-SMART drug trials in April 2020 which gives hope at slowing down the progression of the disease. This has been paused due to Covid-19, so I hope the trials will be up and running again soon so that I can be a part of the ground-breaking trial.

“It’s so important to continue raising money for research. In 2020 we can cure cancers and offer so many treatments for a variety of illnesses. But there’s still nothing for MND.”

You can help fund Jo’s mission to find a cure this MND Action Week by donating what you can here. You can also follow Jo’s journey through her blog at josjourneywithmnd.home.blog.