Duns mum Jude tells of her son's heart-breaking MND journey

Jody lived in Australia when he was first diagnosed with MND and shortly after returned home  to live with Jude, who became his full-time carer.

He then underwent treatment at the Leeds Teaching Hospitals NHS Trust, MND Centre.

This is Jude’s story. You can support Jude's fundraising by making a donation here.

“Jody died four years ago of motor neuron disease, the most evil disease that there is. And since he died I felt a great passion to raise money for various charities.

“I fundraise for the local hospice, for the local research unit and now Leeds Hospital’s  charity because I’m so passionate about the Rob Burrow MND Centre.

“Jody kept it all so quiet to me and he started getting weakness in his right arm and right hand and he thought he’s got RSA Repetive Strain.

“And then he noticed that he was starting to get a bit of a drag of his foot and that was feally worrying him.

“And at that point he decided to go and see his doctor and he said it’s probably just muscular you know and you’ll be fine.

“And then he went back a month later it appears and I’m starting to slur my speech, I feel as if I’m a little bit drunk so he went back to the GP and he referred him to the neurology unit in Sydney. And they were fairly rapid.

“Within three months Jody had his diagnosis.

“So I always remember him calling me and for him it was the middle of the day and for me it was the middle of the night.

“He called me and said ‘mum I’ve got Motor Neuron Disease’

“I was standing behind the sofa, and behind the sofa was the hoover and I kicked it. I was so angry and so frustrated. Why my son? I actually broke the hoover. I look back now and I laugh.

“Very rapidly his speech disappeared and his swallow. He was choking on food. He’d been diagnosed in July and by February he was losing weight rapidly.

Jody and Jude

“So when I saw him in November he was about 70kg having already lost weight but by the time he came home in June he had lost 20 kilos because he could no longer swallow.

“The GP made a referral so we had the OT. Helen (Armad) became part of my family. Jody loved her. She was smashing.

“And mention her name because she was amazing. We had nutritionists out, Helen Berry. We had a physiotherapist, but everything was coming at different times. And we found out that everything was quite slow.

“And when I heard about the Rob Burrows MND Centre it felt like a gift from heaven.

“I really feel that of only that had been there for Jody and been there for me, if it had been there for his two sisters, if only that had been there four or five years ago it would have made a huge difference to our lives.

“Everything was hard work, and my GPs were just amazing. Dr Shamsi, Dr Shut and Dr Ward, just fantastic surgery.

“Jody did eventually die at home. If we’d had the Rob Burrows Centre, we would have been able to go there.

“Jody would have had accessibility to maybe have respite and actually enjoy and be able to move around because we were in a very small adapted council flat because I had to leave my  townhouse when Jody came home because he was trapped upstairs.

“I think Jody just missed the opportunity to be moving around very easily in his wheelchair and I think that if we had the Rob Burrows (Centre) I’d have had the support that I needed earlier, perhaps recognised my potential PTSD.

Jody and Jude

“And even though I had support from the hospice I still felt that there was a lack of understanding of what MND is and how distressing it is.

“But I think that if we had had MND specialist nurses they would have understood the distress of leakage or the mask not fitting properly underneath.

MND specialist nurses know all about the breathing machine because he wouldn’t allow anyone else to put on his mask but me and Anna who was our full-time personal (carer). She’s a fabulous girl. She’s almost like a daughter to me and best mate to Jody.

“So I would encourage everyone to do whatever they can. You don’t have to go up Ben Nevis but I will do even if I have to crawl.”

Find out how Jude got on in the Border Telegraph next week.