Living with the effects of motor neurone disease

Jamie Robertshaw
Jamie Robertshaw
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A few years ago, Jamie Robertshaw went to the gym, played squash and football, along with a host of other activities.

Now the 38-year-old is in a wheelchair, unable to move much of his body and needs a ventilator to help him breathe.

He has motor neurone disease (MND), which – as he says - is a “horrific” illness.

Despite this, the dad-of-two refuses to get depressed or angry about his situation.

“I think I’ve remained positive throughout it,” he said.

“I’m a positive person and I take each day as it comes.”

Motor neurone disease is a neurodegenerative illness which leads to weakness and wasting of muscles, loss of mobility and difficulties with speech, swallowing and breathing.

There are different types of the disease, and it can affect people in different ways, but there is no cure. Some forms are slowly progressive, while others develop much faster.

For Jamie, it was a minor twitch in his bicep which alerted him that there was something wrong.

“I didn’t think much of it,” he said. “But a few weeks later it was still there and I made an appointment to see my doctor.”

That was in summer 2011 and was the start of an 18-month process which involved Jamie seeing doctors in Leeds and an expert in Sheffield.

During that time, his symptoms had been getting worse.

“I was getting weakness in my right arm, Before that I was quite active, going to the gym and playing squash and football,” he said.

It was after a hospital stay in Sheffield in autumn 2012 that Jamie was diagnosed with MND, as it had been especially complex.

By that point he had looked online and had an idea that his symptoms could indicate the disease.

“I had an inkling it was something, but this was the worst case scenario,” he said.

“When she gave me the news, I took it well. I had sort of prepared myself for that.

“The hardest thing was explaining it to my two boys, who are now 13 and 15. That was upsetting for the whole family.”

At the time he was told, Jamie was still working in insurance for Direct Line, but by January last year was unable to.

“My breathing was getting too bad,” he said.

“This time last year I was walking but this horrific disease has spread through my body.

“It’s affected my limbs so I’m totally immobile now. I rely on my family.

“My family and friends have been unbelievably supportive, they’re amazing.”

Jamie is cared for at home in Halton, Leeds, by his wife Keeley, 38, with help from his mum, and they have had their house adapted, with some funding raised by colleagues, family and friends.

The couple are keen to raise awareness of the disease too: “It does not seem to me as though there’s much awareness of it and how devastating a disease it is,” Jamie said.

However they are full of praise for the Leeds Regional MND care centre, where he is treated.

Consultant neurologist Dr Agam Jung, one of the centre directors along with consultant in palliative care Dr Annette Edwards, said their team included specialist nurses, physiotherapists, speech and language therapist and dietician as well as representatives from charity the MND Association.

There is also a dedicated neuropsychologist and a specialist wheelchair therapist, who Jamie and Keeley said had been very helpful to them.

“Only two centres have been identified nationally for this service and Leeds is one of them,” Dr Jung said.

She added that the centre was developing its services, including by extending appointments: “We have dedicated new patient clinic time of adequate length so that when patients are first seen there is sufficient time to discuss results and the diagnosis, the course of the disease and to offer support to the patient and family as this is a life-limiting condition.”

There is already one clinic with specialist nurses for current patients, with plans for another underway, as well as a second full-time specialist nurse.

MND FACTFILE

MND can affect any adult at any age but most people diagnosed with the disease are over the age of 40.

About two people in every 100,000 people will develop the disease each year.

Men are affected around twice as often as women.

MND does not usually affect the senses or the bladder and bowel.

The disease is thought to be caused by a variety of factors.

For more information, log on to www.mndassociation.org.

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