“I’ve had a great life. I’ve travelled the world and it’s been wonderful but that doesn’t make having Motor Neurone Disease any easier.”
75-year-old Chris Allen has four children, seven grandchildren and one great-grandchild on the way. Just over two years ago, he was diagnosed with MND.
“It started off with a pain in my muscles,” said Chris, who lives with his wife, Polly, in Hinckley.
“I started having trouble walking and my back started playing up.”
Chris said that when he was diagnosed with MND, his ‘life turned upside down’.
“Before I had MND I could do anything; if you named it, I could do it. Now I’m powerless.
“Imagine getting this, all of a sudden you can’t do anything. I can’t play golf and I can’t play the drums, two things that I have always loved doing.
“Cars are the love of my life and I can’t even drive anymore.
“I can feel myself getting worse.
“I feel like I’m carrying tonnes of weight and my legs feel like lead. It doesn’t affect my brain though but I feel like my head is taken up by keeping everything going. It all feels like a bit of a nightmare.”
Chris is now a fulltime wheelchair user. He says he often lies awake thinking about the illness and although he tries not to think about what’s going to happen, he does sometimes worry about how he is going to die.
“It scares me,” he added.
“I don’t want to become a veg.”
When Chris was first diagnosed, he said he struggled to find support from doctors and then one day, somebody told him about LOROS.
LOROS MND Specialist Nurse, Jane Glover started going to see Chris once a month, which soon led to him being in contact with the Hospice’s Occupational Therapists too.
Soon enough, Chris found himself regularly going to day therapy at LOROS, as well as attending the monthly MND support meetings organised by fellow patient, Tony.
“Jane answers all the questions I need answering and I’ve also had some complementary therapy sessions, which is just another thing to help me deal with having this illness.” Polly also comes to the MND support group with Chris.
“Coming to day therapy gives Polly a break from caring for me. However, she does come to the support group once a month, which is good for her too,” he said.
“She’s finding it really difficult because the illness is gradually taking over our lives. I mean, it must be hard watching someone you love slowly disintegrate.”
Polly said the day they found out Chris had MND was “devastating”.
“It’s such an emotional disease because it slowly takes away so many of the things we value in life.
“It’s the small things that now seem huge, like Chris being able to give me a hug or a cuddle. We miss going for walks together and holding hands, or shopping, which I have to do now mainly on my own.
“I feel so sad for Chris and the things he now can’t do which he so much enjoyed doing, like playing golf, gardening or playing the drums and driving.
“We are making the most of the time we have at the moment but really, we are so grateful that we have such brilliant memories from before Chris was diagnosed with MND.”
The pair said that having the support from LOROS makes it so much easier for them to cope with me Chris having MND.
“I can’t praise the Hospice enough,” added Chris.
“I felt so alone before but now I get to meet others in the same position as me, which is good. All of sudden, I realised there was a life outside my home and there was more to life than having MND.”