January 21, 2023 12.00 pm This story is over 24 months old

What life is really like with motor neurone disease

Lincolnshire man’s life has been totally changed

A father-of-two living in Lincolnshire has described living with motor neurone disease (MND) as being “very lonely” and like a “ticking time bomb” as he continues his battle against the condition.

Motor neurone disease is a described by the MND Association as a “fatal, rapidly progressing disease that affects the brain and spinal cord” and can “leave people locked in a failing body, unable to move, talk and eventually breathe”.

The charity says that there are currently 5,000 people in the UK at any one time living with MND, and over 80% will have communication difficulties, including for some a complete loss of voice.

Les Cotterill, 64, grew up in West Bromwich and spent most of his life in the West Midlands area, but in the summer of 2022 he moved to a bungalow in the Lincolnshire village of Mareham-le-Fen.

He has knowingly lived with MND since February 14, 2022, but his first symptoms appeared on December 28, 2020 when he suddenly found he could no longer lift his left foot.

Before his diagnosis Les was doing 30 minute sessions on an exercise bike and walking up to five miles with his wife Angie in Lichfield, as well as spending time at his allotment digging, and growing his own fruit and vegetables.

When he went with his wife to see the consultant neurologist in February 2021 he expected to find out that he had a trapped nerve and how to deal with it. However, Les said the neurologist then “dropped the bomb shell that she was diagnosing me with MND”.

As MND continues to take hold of Les’ body he can now no longer walk unaided and no more than around 50 yards without both sticks, and a brace on his left leg to hold his foot up and stop his left knee giving way.

Les used to love going out walking and would carry his photography equipment with him (left), but now when he must used his mobility scooter (right) or wheelchair.

He told The Lincolnite: “The neurologist told me the results of the scans and did a medical examination there and then. She said she couldn’t find anything wrong in the scans other than normal, age related, degeneration in the discs of my back other than age related.

“I then got a diagnosis of MND. This is why MND is so horrible. There is no test for MND. They determine it by ruling out everything else.

“It feels like a death sentence and MND is back where cancer was 40 years ago. It’s a ticking time bomb and it’s a very long journey. It’s very lonely because nobody can see inside you.

“The most frightening thing is that there are people out there on a day-to-day basis who are going to hear these horrible words. Sometimes with a disease like this it’s almost a case of you have to get used to having it before you can take on board what it actually means.

“My wife and I had to tell our boys and friends about it and slowly the diagnosis hits home this is where you are. Your most natural thing to do is to start finding out about it because somebody has given you a death sentence so need to do what you’re dealing with. I decided to read things online which frightened us both.”

He added: “I know it is too late for me, but can only hope a cure can be found so that others do not have to suffer like this.

“The most difficult part to deal with is the knowledge of what is going to happen to me… we have all seen celebrities suffering from MND and have watched how their fortunes have changed. I know I am going to be wheelchair bound and incontinent and may even loose my speech.”

Les has already recorded his voice so that if he loses his speech he can still use technology to speak to people.

Les and his wife Angie out walking before his diagnosis.

A long successful career and life after the MND diagnosis

Between 1980 and 2010 Les worked as a police officer for West Midlands Police before spending six months starting his own allotment.

During his time as a police officer Les also spent seven years running a judo club in Lichfield teaching boys and girls aged 7-16. The qualified judo coach as a way of helping children through difficult times in their lives.

He worked as a volunteer for Citizens Advice Bureau in Litchfield for 18 months before helping to set up an allotment garden at a local special school, as well as doing other jobs including supermarket delivery driver and an exam invigilator.

After having such an active lifestyle, the MND diagnosis totally changed life for Les and, after realising they couldn’t afford the type of house he would now need in the West Midlands, they decided to move to Lincolnshire.

Les loves village life and the fact that people always stop to say hello, while being able to hear the Typhoons from RAF Coningsby.

However, life is no longer how he once knew and loved it, and he said the hardest part is “watching how this is destroying my wife’s life”.

Les said: “Everything that I was used to doing has stopped. I can no longer hold a knife properly in my right hand so eating and cutting anything is almost impossible. ”

He also has limited grip in his left hand and needs to use a wheelchair or mobility scooter.

He added: “Everything I do now is totally sedentary. Television wouldn’t go on in our house before unless it was pouring down with rain. We did not think about having Amazon Prime, Netflix or Disney+ as we would never get the value of them. Now they are my basic staples as the TV can go on at any time of the day.

“I have learnt to live with it because now I’ve had it for this length of time. It doesn’t make it any easier, but you have to cherish each day.”

Les is “desperate not to become wheelchair bound so I will do everything possible to shower and dress myself…even if that takes me an hour to achieve and totally washes me out for some time”. He no longer wears clothing with buttons and has thick long socks because the circulation has gone in his left leg.

Les loves to spend time with his grandchildren, who call him ‘Dumps’, and he is trying to do as much as he can with them even though he knows it will wear him out.

Living with MND has meant making adaptations to his home.

Living with MND has also impacted Les financially. Instead of taking his wife to New Zealand which he had been saving for, he has now had to put money towards alterations to his home.

Adaptations include a lower threshold at the front door and a raised pathway for the wheelchair and altering the driveway, and will cost around £7,500. He said £1,500 will be funded by the MND Association and a further £1,000 from adult social care (county council), but the rest he has to fund himself, as well as additional costs for inside his house such as the en-suite being converted into a wet room.

In addition, Les said that due to how long he would have had to wait for scans and consultations, he paid around £4,000 to have this, and physio appointments, done sooner.

Fundraising and raising the profile of MND

Les’ wife Angie works as a ‘Soup Dragon’ at Mareham-le-Fen community centre. Along with a friend Pat, she does a soup kitchen once and month where she also makes and sells cakes for a charitable donation towards the MND Association.

The profile of the disease has been in the public eye much more in recent years due to former professional rugby stars Rob Burrow, Doddie Weir, and Ed Slater being diagnosed with MND. Sadly, Doddie lost his battle with MND on November 26, 2022.

Burrow’s former Leeds Rhinos teammate Kevin Sinfield, who is now the defence coach for the England national rugby union team, has taken on several marathon and ultramarathon challenges and raised over £7 million for the MND Association.

Les’ wife Angie works as a ‘Soup Dragon’ at Mareham-le-Fen community centre, where she also raises money for the MND Association.

Les, who has two grown up sons called Rob and James, said: “I don’t want to be told everything, I need to find out things for myself, understand it and then from there I can look into with a bit more information. Because I read about it with no knowledge (after the diagnosis) it frightened me silly, and I expected to be dead within weeks.

“Now two years on and I’m still here. I don’t know what the future holds and the rate at which my body will shut down. All I know is I expect to wake up tomorrow. The fear I had at day one hasn’t gone, but I have now been able to accept it.”

Les is taking each day as it comes and looking forward to going to an adapted MND Association cottage in Scotland for a break with his wife Angie in April.

He also praised the work of the MND Association saying “they do so much for people with MND and it means a lot.”

For local people with MND there is a Lincolnshire Group which aims to provide support and there is more information online here.

ALSO READ: Les has written his own report entitled ‘What is it like living with MND?’ which you can read in full here.


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