Motor neuron disease: footballer Len Johnrose on his diagnosis, awareness and funding | United Kingdom | New UK News

He said: “For me, going public was really a cry for help. We weren’t discussing the situation at home and mentally I was deteriorating. I needed an outlet and talking was my salvation, really. I first mentioned it when I was on BBC Sport Lancashire and within hours it was the main story on the BBC Sport website.

“The MND association contacted me to offer their support the very next day and this proved to be vital, not only for my own care, but also for working together to educate people about MND and hopefully help. others.”

After living for four years with the disease that affects the brain and spinal cord, Len is supporting a Sunday Express crusade to secure £ 50million in government funding, over five years, for an MND research institute to enable scientists to find an effective treatment and hopefully a cure.

Len said: “There are so many organizations out there looking to find a cure.

“It seems clear that working together and pooling funds, knowledge and information is the best way forward.

“Honestly, it wouldn’t affect my life in any way, but for those of us who campaign, fundraise and raise awareness, we’re not doing it for our own benefit, we’re doing it to try to create a world without MND for the future.

“Obviously, the more funding we have, the sooner that future becomes the present. “

Len, 51, who has played 500 Championship and Cup games in a 16-year career that included spells with Burnley, Bury and Swansea City, wants MND cure to prevent future generations from going through it .

He said, “Motor neuron disease is brutal. He does not discriminate and does not spare. It robs you of your ability to walk, of your ability to move your arms. It robs you of your ability to cough, swallow, and ultimately breathe. You are doomed to live in a body that is not functioning. Hope this gives some idea of ​​”life with MND”.

Len was born in Preston, Lancashire, in November 1969, the youngest of five brothers and a sister.

He was raised by his mother Agnes after arriving in West Indian England, where two of his brothers stayed, and he described his childhood as “wonderfully happy”.

Len signed schoolboy forms with 14-year-old Blackburn Rovers, making his professional football debut four years later.

He is very proud to have helped Bury and Burnley get promotions and met his wife, Nadine Robinson, in night school at Preston College in 1997, saying it was love at first sight for him.

He recalls, “I couldn’t take my eyes off her and at the end of each class, I practically wanted to spend the days until the next lesson. Twenty-five years later, I still look at her the same way I did first. time.”

Nadine persuaded Len to become a teacher after retiring from football in 2004, and he said: “I had no intention of becoming a teacher let alone the desire to spend all day looking after the children. from someone else.

“But I can honestly say that it gave me as much pleasure and satisfaction as playing football. I loved children, even the most difficult ones, and every day was an absolute pleasure to go to work.”

About five years before he was diagnosed with MND, in March 2017, he started to experience mild weakness in his right hand, which he said was the early onset of arthritis.

The tests for this turned out to be clear and a few years later he broke his hand on the school trampoline and despite the x-rays showing the fracture had healed his hand was even more weakened. It took 18 months after seeing her GP to be referred to a neurologist who diagnosed MND.

Len said: “Prior to the diagnosis Nadine suspected I might have MND so during one of the tests we asked the consultant if this is what it could be. To hear the words” I have fear of not being able to rule it out ‘, was absolutely upsetting.

“It was August 2016, and the next six or seven months were the most difficult of my life. I was convinced I had MND and thought about it all the time.

“It became difficult to focus on anything, and yet when we got the news it was still a huge shock, like I had never experienced before.”

He added: “The next few days, however, I was really pragmatic in my attitude. I started to organize things like funeral plans and thought I was doing it. But every few weeks, I experienced butterfly sensations, which coincided with feelings of bad humor and fatigue.

“I started seeing a neurological psychologist, which really helped me, but the periods between the butterflies were getting shorter and shorter until, finally, I felt I couldn’t cope with the pain anymore. life. Looking back, it was quite difficult. “

Len, who still lives in Preston with Nadine and their teenagers Elizabeth and Patrick, said the impact on his family also weighed heavily on him.

He said: “The diagnosis affects the family every day in different ways but initially we didn’t tell the children.

“In fact, it wasn’t until Easter the following year that I sat them down and did what was the hardest thing I would ever have to do. The same with our families and friends. , it took a while to let them in.

“So until that point it was a business where Nadine and I were trying to stay positive and get things done.”

Len added, “At first it was only my hands that were affected. They were getting weaker and weaker and I was starting to drop things. My arms started to twitch, which made it difficult for me to sleep. the night of worry.

“Over time, I became less concerned with the physical changes, which some have had to face their entire lives.

“Things are deteriorating at different rates; I am now constantly in a wheelchair, have a feeding tube and my voice is pretty awful, but none of that really bothers me. Emotionally, I am really healthy and that is so much more important to me.

“Without a doubt, the hardest thing is the effect it has on my family. Both physically and mentally it can be terribly exhausting, but they never complain and just try to cope in the best way. possible.”

After his diagnosis, Len says he immediately knew he wanted to help others by raising awareness about MND and funds for research.

He said: “From the minute I was diagnosed, it was always my intention to try and help others in the same situation, but the timing had to be right for me.

“I wouldn’t say it helped me run things better, it’s really about doing the right thing.”

200,000 will die if we don’t find a cure

Motor neuron disease describes a group of diseases that attack the nerves controlling movement, causing the muscles to stop working.

It is a rapidly progressive fatal disease that affects the brain and spinal cord, but it does not affect sight, hearing or sensation, leaving some patients locked in a body unable to move and possibly to to breathe.

People with the condition will lose the ability to walk, use their arms and hands, and eat, without order, and more than 80 percent will have communication difficulties. A third will die within a year of diagnosis, but this is not uncommon and one in 300 people will develop it.

About 200,000 of the UK population will die from MND unless effective treatments are found.