We use your sign-up to provide content in ways you’ve consented to and to improve our understanding of you. This may include adverts from us and 3rd parties based on our understanding. You can unsubscribe at any time. More info

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 speaking out was my salvation, really. I first mentioned it when I was on BBC Sport Lancashire and within hours it was the lead story on the BBC Sport website.

“The MND Association got in touch to offer their support the very next day and that turned out to be vital, not just in terms of my own care but also working together to educate people about MND and hopefully helping others.”

After living for four years with the disease that affects the brain and spinal cord, Len is backing a Sunday Express crusade to secure £50million of Government funding, over five years, for an MND Research Institute to allow scientists to find an effective treatment and, hopefully, a cure.

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

“It seems clear that working collaboratively 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, raise funds and awareness, we’re not doing it for self-benefit, we do it to try to create a world without MND for the future.

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

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

He said: “Motor neurone disease is brutal. It does not discriminate, nor does it spare. It strips you of your ability to walk, of your ability to move your arms. It strips you of your ability to cough, to swallow and, ultimately, to breathe. You are consigned to live in a body that does not work. I hope that gives an idea of ‘life with MND’.”

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

He was brought up by mother Agnes after she came to England from theWest Indies, where two of his brothers remained, and he described his childhood as “wonderfully happy”.

Len signed schoolboy forms with Blackburn Rovers, aged 14, making his professional debut as a footballer four years later.

He is most proud of helping Bury and Burnley gain promotions and met his wife, Nadine Robinson, at night school at Preston College in 1997, saying it was love at first sight for him.

He recalled: “I couldn’t take my eyes off her and at the end of every class, practically wished away the days until the next lesson.Twenty-five years later, I still look at her in the same way I did that first time.”

Nadine persuaded Len to become a primary school teacher after he retired from football in 2004, and he says: “I had no intention of becoming a teacher and even less desire to spend all day looking after someone else’s children.

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

About five years before he was diagnosed with MND, in March 2017, he started experiencing slight weakness in his right hand, which he thought was the early onset of arthritis.

Tests for this came back clear and then a few years later he broke his hand on the school trampoline and despite x-rays showing the fracture had healed his hand was further weakened. It took 18 months after seeing his GP to be referred to a neurologist who diagnosed MND.

Len said: “Prior to diagnosis, Nadine had suspected that I might have MND so, during one of the tests, we asked the consultant whether that was what it might be. To hear the words ‘I’m afraid I can’t rule it out’, was absolutely earth shattering.

“That was August 2016, and the following six or seven months were the most difficult of my life. I was convinced I had MND and it was on my mind constantly.

“It became difficult to concentrate on anything, and yet, when we received the news, it was still a huge shock, like nothing I’d ever experienced before.”

He added: “The next few days, however, I was really pragmatic in my attitude. I began arranging things like funeral plans and thought that I was coping. But every few weeks I’d experience butterfly-like sensations, which coincided with feelings of low mood and fatigue.

“I began seeing a neurological psychologist, which really helped, but the periods between the butterflies were getting shorter and shorter until, eventually, I felt that I couldn’t face life any more. Looking back, it was pretty tough.”

Len, who still lives in Preston with Nadine and their teenage children, 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 next year that I sat them down and did what was the most difficult thing I’ll ever have to do. Similarly with our families and friends, it was some time before we let them in.

“So, up until that point, it was a case of me and Nadine trying to remain positive and get on with things.”

Len added: “At first, it was just my hands that were affected. They were becoming increasingly weak and I was starting to drop things. My arms began twitching, which used to keep me up at night with worry.

“As time has moved on I’ve become less concerned with the physical changes, some of which others have had to deal with all their lives.

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

“Undoubtedly, the most difficult thing is the effect that it has on my family. Both physically and mentally, it can be terribly draining, but they never complain and simply try to cope the best way that they can.”

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

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

“I wouldn’t say that it’s helped me deal with things better, it really is just a case of doing the right thing.”

200,000 will die unless we find a treatment

Motor neurone disease describes a group of diseases which attack the nerves controlling movement, so muscles no longer work. 

It is a fatal, rapidly progressing illness that affects the brain and spinal cord, but it does not affect sight, sound or feeling, leaving some patients locked in a body unable to move and eventually breathe.

Sufferers will lose, in no order, the ability to walk, use their arms and hands and eat, with over 80 percent having communication difficulties. A third will die within a year of diagnosis, but it is not rare and one in 300 people develop it. 

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

Source: Read Full Article