Joe, a retired fisherman, was diagnosed with MND – a terminal illness which stops signals from the brain reaching the muscles – in 2014. MND can cause someone to lose the ability to walk, talk, eat, drink and breathe unaided.
After growing up in Fraserburgh, Joe spent most of his working life on a trawler in the North Sea. He would join a crew of 10-12 men in the waters around the British mainland but would travel as far as Iceland, Norway and the Faroe Islands, and would sometime, be away from home for up to 7 weeks at a time.
Joe met his wife Frieda (74), on a dancefloor in 1970 and the couple married four years later in 1974. They have three children, Ian (52), Coll (47) and Joe (39), as well as six grandchildren.
Following Joe’s retirement, the couple relocated to Frieda’s hometown of Auchterarder in Perthshire, where they began noticing the first symptoms of the condition in Joe.
Joe said, “I was first told I had MND at Ninewells Hospital in Dundee in 2014. We were living in Auchterarder when we noticed the first symptoms. I was using an aerosol and I couldn’t press the top down and after visiting the doctors they took me away for X-rays and scans.
“After that, I was booked into Ninewells Hospital in Dundee and I was in there for a fortnight, while they ran all kinds of tests with the specialist.
“They ran tests on my hands using needles to test my responses. I said, ‘how’s it looking’, and he said ‘it’s not good, you’ve got MND.’ I didn’t even know what it was, and that was the first I’d ever heard of it.
“When I went to see my G.P. for the last time in Auchterarder he said that he hadn’t seen it before and the issue is that most doctors will go their whole life and never see someone with MND.
“After that we decided to move up to Aberdeen because our son lives up there. I started seeing a new doctor in Aberdeen and they ran electrical tests.”
Following his diagnosis with MND and his move to Aberdeen, Joe’s condition has deteriorated, leaving him struggling to take on everyday tasks like washing, dressing and doing odd jobs around the house.
“Over time I’ve been deteriorating. I’ve lost the use of my right arm and my left arm is very weak. I’m very slow with my walking, eating is a challenge and I can spit a bit. When I get off the bus I can only get a few hundred yards now, but I have a walking stick and I’ve also got a wheelchair.
“I can’t hold a screwdriver any more, it just slips out of my hand and dressing can be a problem, as well as washing and just adapting.
“This morning when I was leaving my stability class I was putting my jacket on and because I struggle with my hand, I decided to leave the zip and just pull the Velcro across. By the time I got home the Velcro had come loose – so it’s just the little things.
“One of the biggest problems for my family is seeing it happen, they’re living with it. It’s not nice for my wife to be trapped, watching me deteriorate.”
Frieda said, “Two of our boys are away, so they don’t see it the same as Joe does. Coll got in touch with us and he came down and he didn’t realise it was so bad, he comes every two weeks or a month depending. But the one in Aberdeen, we see him all the time, he sees us living with MND more or less and he’s meeting with the nurses on Friday.
“Joe was seeing his own G.P. in Auchterarder when we stayed in Perthshire and he would ask Joe what was wrong with his arm, Joe would say ‘well I don’t know what’s wrong with my arm’, it was shrivelling up and so he sent him to Ninewells and he was diagnosed then, and the doctor knew, because there were three in Auchterarder that had had it and he knew what it was.”
Despite facing a deteriorating condition, Joe has kept a positive outlook on life and has tried to continue living as normally as possible, although this is becoming increasingly difficult.
He said, “The NHS and MND Scotland have been very good. The NHS has helped us out with a ramp for the bed, which lets me sleep with my back raised. It makes it easier to get up and can stop me from choking. I’m waiting on seeing a respiratory specialist as well.
“The MND Scotland support group in Aberdeen has been very good. I had my first one in Aberdeen a year ago. I’d never heard about anyone with it before, so it was nice to see everybody and see how everybody was coping and getting their story. The group and the staff go over and above.
“There’s not a way around about it, you just have to accept it and get on with life."
This MND Awareness Week you can support our Thunderclap campaign which will post a message of support on your social media pages and you can update your social media profile picture with our ‘Twibbon’. You can also donate to MND Scotland below or donate £5 by texting CUREMND to 70660.