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Moira was misdiagnosed 3 times before her MND diagnosis was confirmed.

Glasgow woman Moira Gilmour shares her "living hell" diagnosis with Motor Neurone Disease.

Moira was misdiagnosed 3 times before her MND diagnosis was confirmed.

Posted : 18/06/2018

Moira Gilmour (63), from Glasgow, is speaking out to help challenge some of the misconceptions around Motor Neurone Disease (MND) and to help raise the profile of the condition during MND Awareness Week.

Moira, a former civil service worker, is married to Jimmy (66). The couple married in Gretna in 1997 and Jimmy is a father to Wendy (37) and Heather (35) and grandfather to 6. Moira’s closest family, sister Aileen (67), brother-in-law Iain (64), niece Jennifer (30) and nephew Alasdair (28) all live in Bedford.

The family’s lives were turned upside down in 2015 when Moira was diagnosed with MND.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

However, because there is no specific test for MND, doctors can often find the condition difficult to diagnose.

Moira said: “I’ve always loved walking and I used to go walking at least once a week with a friend, but in 2012 I noticed that I was dragging my left leg and I was getting pains in my back.

“I went to the GP and I was referred to the hospital for a hip replacement. They told me I’d feel like a new woman, but my leg was still numb with the new hip. I was told that it could take a whole year to get used to the new hip, so I waited. A year came and went and my leg was still no good.”

“That’s when they referred me to a neurologist, but by this time the whole process started to affect my mental health as I had effectively wasted a whole year and I had to start the whole process again.

“When I saw the neurologist, it was recommended that I get a MRI scan and a nerve conductive test. This was when I was first told that I had MND.

“When I was diagnosed with MND the first thing I thought was: why me? I had heard of MND before but when I was told I blocked it out. It took us a long time to get our heads around it.”

But after being diagnosed with MND, Moira’s medical consultants then advised her that it was “99.9%” Multiple Sclerosis (MS), plunging the couple back into uncertainty.

“The whole process of going through the diagnosis was a living hell. I had to receive counselling and I was put on anti-depressants. At one point it felt as though nobody was helping me and I was going through this on my own. The worst part about the whole process was the changing diagnoses and waiting for all of my appointments.”

Jimmy said: “We were due to go on holiday, so we managed to get away from hospitals, doctor’s appointments and the stress of dealing with it all. When we came back we decided to celebrate because we thought: ‘we can live with MS longer than we can live with MND.’”

But their relief was short lived when Moira’s original MND diagnosis was confirmed.

Moira said: “They sent me for a lumbar puncture and that came back clear, so they then told me, no sorry, it is definitely MND.

“My initial reaction was, this is it, this is my last Christmas.

“The doctor told us that if there was anything we wanted to do together, we should do it in the next 6 months. At that time, I wasn’t thinking about what I wanted to do, I was thinking about what I needed to get done before I was gone. I worried about how I was going to leave Jimmy, so I stopped spending money.

“It’s a very tough thing to hear that you might only have a matter of months left to live, but if I could go back in time, I would have listened to the doctor and I would have encouraged myself to go on more holidays, like visiting Jimmy’s daughter in Canada. But it took us 6 months to get our heads around it and by that time I was more disabled so it became difficult to start planning holidays.”

Jimmy said: “In that time the pair of us had planned Moira’s funeral arrangements and I was worrying about what I would do after Moira was gone, but Moira has progressed much slower than we originally thought.”

On top of having to deal with a devastating diagnosis, Moira and Jimmy have also had to deal with a lack of understanding of Moira’s condition.

Moira and Jimmy have been supported by MND Scotland, and the charity is running a ‘myth-busting’ campaign to help highlight some of the misconceptions and lack of awareness that exist around MND.

Moira said: “Over the Christmas period I fell and broke my leg and I was in the hospital for a few days as a result. While I was in the hospital, there didn’t seem to be a great deal of understanding amongst the nurses as to what MND was, or what I could and couldn’t do for myself.

“I could see that the nurses were busy, but when I said: ‘I can’t do my toast, would you be able to butter it for me’, it was like it was a hassle for them.

“When you’re left alone you quickly realise that there actually isn’t a lot that you can do on your own. I tried to explain to them but the nurses were changing all the time and different people were seeing you. Some of them said: ‘we don’t know what MND is, can you let us know what you can and can’t do’, whereas some didn’t.

“On a few occasions Jimmy actually had to bring in a sandwich for me, as I just had to leave my food. After that, one of my friends who knew that I had bother started coming in to help when I was having my tea, as there was nobody that could physically sit and help me.”

On the issue of wider awareness of MND, Jimmy said: “I’m a big Rangers fan and I knew about Fernando Ricksen and Jimmy Johnstone before Moira was diagnosed, but I didn’t know that everyone has a different progression with MND.

“I think there’s a lot of confusion around MND generally.

“I did a lifting and handling course with the Council and they kept telling me I was doing it wrong. They didn’t understand that because of Moira’s condition, I can’t lift her certain ways, as she has no feeling or movement in her legs and her entire body is very fatigued. I had to tell them that Moira doesn’t have some abilities and that MND is totally different from a stroke, for example.”

Visit mndscotland.org.uk/MNDAware for more information about MND Scotland’s ‘Myth-Busting MND’ campaign.

If you have a story you'd like to share, please get in touch with Niamh Callan and Craig Watson in our Communications team at communications@mndscotland.org.uk.

 

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Motor Neurone Disease is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles.

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