Leyland woman talks about living with MND
Having motor neurone disease is a 'horrendous muscle wasting terminal disease you wouldn't wish on your worst enemy.'
Vicky Round, of Leyland, was diagnosed with the condition in August 2016, after noticing weakness in her hands and suffering cramp in her legs.
The 63-year-old was given the devastating news that she had 12 months to three years left to live and faced the harsh reality of not being able to do anything for herself anymore.
She says: “I noticed weakness in my right hand and had weakness in both arms and my tummy. I was struggling to even lift my grandchildren. I also woke up in the middle of night as I had cramp in my legs.
“My GP was unable to work out what was wrong and I was referred to the orthopaedic department to have an operation on my hand.
“As a nurse, I have some understanding of things. I had researched MND and I just knew it was that. So I said I wanted to be referred to the neurological department. After EMG muscle tests and having needles pushed into my muscles, it was revealed I had MND.
“Even though I knew, it came like a bolt out of the blue. It was horrible.
“The doctor said I had between 12 months and three years to live. It was a horrible thought and I don’t want it to happen.
“But over time I have become more accustomed to it and able to accept it.
“I don’t want to die but I know it is going to happen at some point. My dread is not being able to swallow or breathe, as the disease will take over very quickly and the life expectancy is not that long.”
Her husband, Nigel, 67, is her carer.
She adds: “It is a horrendous muscle wasting terminal disease and not something you would wish on your worst enemy. It takes every single ounce of independence from you.
“It is so frustrating as you are not able to do anything you used to do. Even if you have an itch you can’t scratch it.
“I used to do a lot with my grandchildren but that has had to stop.
“The worst thing is the fact Nigel had just retired and he was looking forward to doing more things and going on holidays. But now, he is my full time carer.
“I am in an electric wheelchair and we had to convert our home to include a wetroom and bedroom downstairs.
“I can’t do anything for myself. I can’t feed myself, get dressed or go to the toilet. The only thing I can do is sit with an iPhone in my hand.
“Shortly after my diagnosed we went on a big holiday to Africa and went to Mexico in 2017, as I was determined to go on more holidays.
“I have lots of lovely memories and I am glad we did it while I still could.
“I just want to cram as much as I can in, but that depends on how tired my body gets. What little bit of muscle control I have even if I stand for a second I get really tired.”
The illness had progressed so much, she had to give up work in March 2017. During her career in the medical profession, she had worked at Sharoe Green Hospital, Chorley A&E and the NHS Direct/111 service.
She adds the MND team at Royal Preston Hospital has been remarkable in delivering healthcare and support.
She says: “They really take you under their wing.”
Vicky is also touched by the support she has been given by family friend Sam Anderson, of Lea.
The 27-year-old ran every day over the course of 2018, raising £2,225 for MND Association.
She beams: “He deserves recognition for all the hard work he has put into his fund-raising.
“He has done amazingly well for a non-runner and I really admire his determination in completing the challenge he set himself.
“He didn’t need to do it, but wanted to help fund further research and provide other MND patients with items to help make day to day living possible.”
Amongst Sam’s daily runs, he has completed the Manchester 10k, the Great North Run, Lytham half marathon, Hutton 10 mile run and Longridge Pudding Run.
He says: “A couple of friends had done something similar a few years ago and as I wanted to get fitter and support Vicky, I decided to combine the two.
“It was a last minute decision in 2017 and so on January 1 last year I went out for a run and I took it from there.
“It was hard running every day. I went through waves of struggling for a month and then I got into it. Vicky was my motivation and doing the bigger events kept me going.
“It is such a good feeling finishing as I needed a rest.”
To make a donation visit www.justgiving.com/fundraising/samandie91.