Leeds woman's motor neurone disease heartbreak leads to JustGiving campaign

For a dedicated hospital worker and world traveller, a shock diagnosis of motor neurone disease this year felt particularly cruel for Ruth Taylor.

By The Newsroom
Saturday, 24th November 2018, 12:01 am
Updated Saturday, 24th November 2018, 4:35 pm
Ruth Taylor at home in Moor Allerton.
Ruth Taylor at home in Moor Allerton.

The condition has left the 44-year-old determined to live life as much as she can in the time she has, which could be just months.

She is pursuing dreams of marriage to partner Rob Rippon, more travel and lasting memories, while a fundraising campaign has started with the hope of her receiving stem cell treatment.

It is not exactly known why motor neurone disease (MND) happens, nor are there currently any cures for the condition, which affects the nerves in a person’s brain and spinal cord that tell muscles what to do.

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Ruth's neurologist told her in July that she could be looking at 18 months to live.

With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.

“Not a lot of people know what it is,” Ruth told the YEP.

“They don’t realise it’s a degenerative, terminal disease.”

She added: “My life was lovely. I met Rob three years ago. I had been single for a long time out of choice. He had never travelled, never been out of the country. He met me and I’m a travel lunatic, I’ve travelled the world on my own.”

Ruth with her brother Samuel Taylor.

Hong Kong, Cuba, Jamaica and swathes of Europe are some of the places Ruth has visited.

“Since he met me he went on his first ever holiday, his first plane ride – we went to Cuba.

“We’ve travelled and loved and enjoyed. I’ve worked and loved every role I’ve ever been in.

“That was life for us up until July.”

One night her whole body began vibrating, followed in days after by terrible cramps in her legs and hands.

After one “really weird weekend” in July where she had suffered more cramping, she decided to go to A&E on the Monday morning.

On her way to inform her boss at St James’s Hospital, she bumped into deputy chief medical officer David Berridge.

“I showed him my hand and you could see the cogs turning,” she said. “David actually walked me over to A&E. Now that’s worrying, if the deputy chief medical officer is that concerned they are walking you to A&E.”

She was referred to have a CT scan, X-rays, blood tests and to speak with a neurologist, as well as being given an EMG, which Ruth said is the most definitive check for MND.

Then her phone kept ringing while she and Rob were at a wedding soon afterwards, and once she eventually picked up, her neurologist said she needed to see Ruth as soon as possible.

“I knew there and then it was going to be bad,” she said. Days later, she went to see her.

“She struggled to tell us,” said Ruth.

“She sat there and told us it was MND, and I could be looking at 18 months.”

Since then, there has been a dramatic change in Ruth, including muscle loss in her tongue which has affected her speech.

The next course is for her to have a feeding tube, and she will likely use a wheelchair.

Ruth, of Alderton Heights in Moor Allerton, is also preparing for how she can communicate with loved ones in future. She has been in contact with a voice bank service which would record her speaking, and has been using a voice recorder app on her phone in the meantime.

One, a recording addressed to her brother Samuel Taylor, says: “Love you Sammy, always have, always will.”

“Even though I can’t continue with a conversation when my speech goes, I can still ask them questions and they can still give me a response,” said Ruth. “I didn’t want it to be a computer.”

Although Ruth is thankful for the hard work of the Motor Neurone Disease Association charity and the teams at Leeds’s hospitals, she is frustrated by a lack of funding for MND and efforts to raise awareness. She would like to see more adverts on television in the way there are now many for charities which help people who have cancer.

“There is no treatment for this disease. There is no cure. They don’t know how it starts or how it manifests. So until they do, they can’t treat it. Not cure it, but treat it,” she said.

Her brother Samuel, who said he was “beyond devastated” by his sister’s diagnosis, has set up a fundraising page online, aiming to get £30,000 for Ruth to receive stem cell treatment.

There are a number of places around the world which offer stem cell services for people with MND, but Ruth said it can be expensive and criteria-based.

She said: “I would be open to any form of experimental treatment because it can’t do anything worse to me. What’s the harm in trying? No harm ever comes from trying.”

Failing that, the money would go towards Ruth fulfilling wishes – she still wants to visit place such as Costa Rica, Panama and San Francisco to name a few.

Marriage is also something Ruth desperately wants before much more change in her living standards, and she would like to be able to walk down the aisle.

“I’ve got memories that will last me until I hop off this mortal coil - I just want to make more memories,” she said. “I thought we would get to 80 years of age, sit there and think, Jesus, we managed, we did it.”

Rob, 47, who is a carer for his father, said: “I know it’s going to be a horrible journey – but I’m part of this horrible journey.”

Ruth has loved working at St James’s Hospital from 1995. She worked 14 years as a nursing assistant on the renal unit caring for children and adults before moving on to an oncology ward.

After a back injury, she became a ward clerk, then a secretary to urology specialist nurses before becoming a PA to esteemed senior colleagues.

Following her diagnosis, Ruth said it has been “lovely” receiving messages from former patients.

But she said: “I’m a terminally ill person who – unless something else happens to me – I’m going to die of this disease. And I don’t want that to be my history.”

View the fundraising campaign at https://www.justgiving.com/crowdfunding/samuel-taylor-1

Fact file

What is motor neurone disease?

Motor neurone disease (MND) is a uncommon condition that affects the brain and nerves.

It gets gradually worse over time. Moving around, swallowing and breathing get increasingly difficult, and treatments like a feeding tube or breathing air through a face mask may be needed.

The condition is eventually fatal.

What are the symptoms of MND?

Early symptoms can include:

Weakness in your ankle or leg – you might trip, or find it harder to climb stairs

slurred speech, which may develop into difficulty swallowing some foods

A weak grip – you might drop things, or find it hard to open jars or do up buttons

Muscle cramps and twitches

Weight loss – your arms or leg muscles may have become thinner over time

Difficulty stopping yourself crying or laughing in inappropriate situations

Who gets MND and why?

Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages.

It’s caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It’s not known why this happens.

How can MND be treated?

There is no cure for motor neurone disease, but treatment can help reduce the impact the symptoms have on your life.

Treatments include:

Highly specialised clinics, typically involving a specialist nurse and occupational therapy to help make everyday tasks easier

Physiotherapy and exercises to maintain strength and reduce stiffness

Advice from a speech and language therapist

Advice from a dietitian about diet and eating

A medicine called riluzole that can slightly slow down the progression of the condition

Medicines to relieve muscle stiffness and help make swallowing easier

Emotional support for you and your carer

Where can I find more support?

Motor Neurone Disease Association

Tel: 01604 250505

Website: www.mndassociation.org

MND Connect provides information and support on all aspects of motor neurone disease (MND) for people living with MND, carers, family members, health and social care professionals, Association staff and volunteers and anyone else affected by MND.

Tel: 0808 802 6262 Monday to Friday, 9am to 5pm and 7pm to 10.30pm. Calls to this helpline are free from landlines and mobile phones within the UK and do not appear on itemised bills.