Vikki Williams (49), originally from Barrow-in-Furness in Cumbria, is currently furloughed from her role at the Sheraton Hotel in Edinburgh. She was formerly the primary carer for her partner, the late Paul Smith, who was a Truck Driver and Martial Arts Instructor until he was diagnosed with MND in December 2016.
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.
Vikki said: “My partner Paul was diagnosed with MND in December 2016. He was a former Truck Driver and Martial Arts Instructor, so he led an extremely fit and active lifestyle. In just under two years his condition deteriorated to the point he couldn’t speak, couldn’t walk, and he relied on a ventilator to breathe.
“Late last year, after nearly two years, I found myself really struggling to cope as Paul’s primary carer, as his health deteriorated even further. I was burned out working full-time, doing everything for Paul, and getting no sleep. Our MND nurse suggested that Paul have a short stay in a local hospice, to help manage his symptoms, and to allow me some time to catch-up on sleep. I would visit through the day and Paul really seemed to be comfortable there with the staff and all the specialist equipment.
“Four nights later, I received a call from the hospice to say that Paul had a bad night, but by the time I got there it was too late. It was absolutely devastating.”
In August 2019, Vikki had joined her mother, Linda Williams (83) for a family holiday in Jersey. It was here that Vikki noticed that her mother had started experiencing health problems of her own.
"I went on a trip to Jersey with my mum in August. My mum used to go there with my dad before he died of cancer in 2017. When we were there, I noticed my mum’s hand was starting to go. I originally thought it must be arthritis. MND didn’t once cross my mind, because it’s so rare and no way could it happen twice to someone that I knew.
“In December, just before Christmas, while I was still grieving for Paul, Mum became very dizzy and fell down the stairs in her home in Barrow-in-Furness. My sister Caroline lived nearby and found her with a broken collar bone. She ended up in the hospital over Christmas and she was kept there for a few months while tests were being run. They tested her for Carpal Tunnel Syndrome at first but, after being held for observation as an outpatient for a while, the doctor told us they thought it was an early sign motor neurone disease. I was in absolute disbelief. He asked us if we’d ever heard of it. I just said yes; actually, we are very familiar with it.
“Mum was extremely upset, but more for me rather than herself. She knew how hard it had been caring for Paul and watching his progression with MND. She saw how difficult life was for Paul, she saw me try to feed him, and she saw him relying on a ventilator to breathe.
“She has since deteriorated quickly. Every week I would drive from Edinburgh to Barrow-in-Furness because she needed more people around her for company and care, and I wanted to support her and my sister any way I could. I only passed my driving test in May 2018, after receiving a grant from MND Scotland for lessons. Paul could no longer drive, and it turned out to be essential for Paul to get to appointments and for me to see my mum.
“When lockdown happened, I was furloughed at work and I came to Barrow-in-Furness to stay in my Mum’s house, so I could be as close to her as I can. She had been placed into a new nursing home which I hadn’t visited, and I was told that I couldn’t visit due to Coronavirus.
“Right now, she can’t use her hands, feed herself, or weight bare. The staff at the nursing home have been incredible, particularly a lady called Donna, who is usually their activities person. With everything going on, she’s made extra efforts to set-up FaceTime calls with me and my sister, so we can speak to our mum and see her. She is currently using a letter board to speak, so we can’t hear her voice anymore. It’s heartbreaking.”
After three months, Vikki’s mother was moved to a local hospital and Vikki was told that they would make an exception for the family to visit.
“It’s been hard being so close and yet so far away, but last week they decided to make a special exception for us to see our mum. It was amazing to see her and very emotional. We had to use a letter board to chat, but hopefully our visit will give her as much a boost as it did for us. We were told that she will have to isolate again for two weeks before she returns to the care home.”
Despite all the distress, Vikki is thankful for all the support she has received from MND Scotland.
“The last few years has been incredibly difficult, but I’ve received so much support along the way. Our MND nurse was incredible and MND Scotland was a huge support with grants towards driving lessons, and an amazing last holiday for Paul and I to Graceland, Nashville and New Orleans. The charity also helped us re-carpet our new accessible flat, which was just a shell when we moved in. MND Scotland was also a massive support to me through counselling sessions, and massage therapies for Paul and myself.
“I have a lot to thank MND Scotland for and that’s why I will always keep raising awareness of MND and funds for a cure and to help other people affected by MND. Throughout June and July, the charity is asking supporters to have a ‘Wee Cup of Tea for MND’ over the phone or video call, and I have also took part in their virtual Fun Run Relay on Sunday 21st June, which was Global MND Awareness Day.”
Craig Stockton, Chief Executive of MND Scotland, said: “I’d like to thank Vikki for her bravery in opening up about what must be an incredibly painful and emotional situation. Vikki’s story underscores the impact that the Coronavirus pandemic is having on the lives of people who are already struggling with terminal illnesses like MND.
“Nobody should have to see a loved one face motor neurone disease, and it’s heartbreaking that Vikki is having to go through this again, on top of the stress and anxiety that the pandemic is naturally bringing to many people across the country.
“MND Scotland will be here to support Vikki going forward.”