Motor Neurone Disease: Expert on early signs and symptoms
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Alisa Maclom-Hutton, 30 at the time, knew something was wrong when she began cramping in her thumbs, making it difficult to do her daughter Isabella’s hair for school. By the time she was finally diagnosed with motor neurone disease in 2013, she could no longer use her arm and had to give up her job as a makeup artist. She has since defied doctors’ diagnoses by passing her predicted maximum life expectancy.
However, it is predicted she may just have six months left.
The condition is a life-limiting, muscle-wasting disease which affects the sufferer’s ability to walk, talk, eat and eventually breathe.
It currently has no cure. Life expectancy after being diagnosed is as low as two to five years.
Ms Maclom-Hutton, now 39 from Davyhulme, told the Manchester Evening News: “When the consultant told me I had motor neurone disease (MND) I didn’t even know what it was – only the life expectancy and that I wouldn’t get fixed at all.
“Not only this, but I was going to get much worse.
“I drove home in a daze after being given a leaflet on MND and was basically told there was nothing they could do.
“I arrived home and we were having a new boiler fitted and all the gas men were there and I just went straight outside and sat in the rain and cried. I think I stayed there all night.
“Then came the moment I dreaded most – telling my six-year-old daughter and not terrifying her at the same time.
“Somehow, I did it and made a pact with her that I wasn’t going to die. That keeps me strong nine years later.”
The mum-of-one is now unable to walk, and has lost the use of her arms.
She can only watch TV independently by using one finger and one thumb to control her Xbox.
She has carers who feed her, give her medication, change her pads and bathe her, as well as acting as her voice when she is too weak to speak.
Ms Maclom-Hutton has over 350 symptoms of motor neurone disease.
These include chronic fatigue, glitching eyes, constant rashes, kidney stones and nausea and can suffer up to 200 of these symptoms per day.
Despite doctor’s warnings, she insists she will live long enough to see a cure for her devastating disease.
She said: “I have a form that says I have under six months to live at any given time, however I don’t listen to all that. I just survive long enough until someone can help fix me with a cure or the correct diagnosis.
“My spirit is still so strong and can’t be broken that easily. My daughter Isabella is stunning inside and out, so polite, really funny and just lovely to be around – so I will stay around.”Q
The brave mum’s carers are now fundraising for a new wheelchair to give her the “freedom and independence she so desperately deserves”.
In a statement on the online fundraiser, Ailsa’s carers said: “All we want is for Ailsa to be able to lead a fulfilling and happy life. Ailsa is a kind, caring and devoted friend, daughter and mother, we all love her so much and want to see her happy.
“Sadly that isn’t possible right now when she is confined to her bed 24hrs a day and can’t enjoy the outdoors, visit places or do the things she loves. We want Ailsa’s life to be full of enrichment and joy as this is what being with her brings to us.”
To donate to the fundraiser, click here.
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