Edinburgh hotel worker's heartache after her partner and mum both diagnosed with motor neurone disease

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An Edinburgh hotel worker has been left devastated after two of her closest loved ones were diagnosed with moror neurone disease

Vikki Williams, 49, first lost her partner to the illness and now she is facing more heartbreak as her mum battles the muscle-wasting condition.

Her long term partner Paul Smith passed away aged 53 after a brave two-year battle against MND.

Just over a year later, her mother Linda, 83, was hospitalised following a fall.

Tests revealed she too had the terminal illness.

Speaking to our sister title the Sunday Mail, Hotel worker Vikki, 49, from Edinburgh said:

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“After my mum was diagnosed, I was in absolute disbelief. The doctor asked us if we’d ever heard of MND and I just said, ‘Yes, actually, we are very familiar with it,’ as it was what Paul had died of.

“My mum was diagnosed exactly three years after Paul. She 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.

“Before Paul was diagnosed, I didn’t know much about MND but I knew it was rare. Then to have two people I’m so close to affected by this horrible disease is incredibly hard to get my head around.”

Truck driver and martial arts instructor Paul – who had a daughter, Amy, 24, from a previous relationship – was diagnosed in December 2016.

Vikki said: “Paul was a big muscular guy and he started to see a bit of an indentation in the muscle in one shoulder. Because of his job as a truck driver and all the martial arts he did, he just thought it was a trapped nerve or that it was down to wear and tear.

“He went to the GP, who ran a few tests. Then Paul’s whole arm became quite weak. It started to affect his other arm too and he had to give up his job as a truck driver.

“His balance was then affected and Paul started to feel vulnerable going out in case he fell over. He did fall once in the street and then at home so he started using a wheelchair for going out.

“He couldn’t drive any more, which was heartbreaking because he loved the freedom of his job.”

Vikki, who had been with Paul for four years, said: “He taught his martial art classes while he could still walk but, even when he had to start using a wheelchair, he would teach seminars and explain to people rather than show them what to do. He had some of his students come round to our house and would teach them in the garden from his wheelchair. He just found another way of doing what he wanted to do.

“Paul tried right up until the end but it was very hard for him as he was trapped in a body which didn’t work any more. It’s when your brain hasn’t told your body that you can no longer do things.”

In November 2018, after struggling to work full-time and cope as Paul’s primary carer, Vikki agreed to let him spend four nights in a local hospice to give her some respite.

However, four days later, she received a call telling her to come to the hospice quickly. Paul died before she got there.

She said: “It was absolutely devastating. Neither of us thought that he wouldn’t ever come back home.”

Just nine months later, Vikki noticed her mum Linda’s hand wasn’t working properly and assumed it was arthritis.

But in December, Linda fell down the stairs and tests revealed she had MND.

Vikki said: “MND didn’t once cross my mind because it’s so rare. I was devastated but my mum has been so brave. She has deteriorated quickly. She can’t use her hands or feed herself and her voice is gone.

“It’s utterly heartbreaking what this terrible disease takes away from people.”

In February, Linda was moved to a care home but she is now being treated in hospital and Vikki has moved into her home in Barrow-in-Furness, Cumbria, so she can be nearer to her.

Vikki said: “It’s so hard being so close and yet so far away but obviously we have to keep our distance to protect them from Covid-19, particularly because of the risk of Covid in care homes.

“The staff at the nursing home have been incredible and have made extra efforts to set up FaceTime calls with me and my sister so we can speak to our mum and see her.”

Vikki says she is thankful for all the support she has received from the charity MND Scotland.

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.

There is no cure and the average life expectancy from diagnosis is just 18 months.

On average, approximately 200 people are diagnosed each year in Scotland and there are more than 400 people in the country currently living with MND.

Vikki added: “The last few years have been incredibly difficult but our MND nurse was incredible and MND Scotland was a huge support.”

Craig Stockton, chief executive of MND Scotland, said: “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.”

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