A rider whose world fell apart when she was diagnosed with motor neurone disease (MND) this summer wants to raise as much awareness, and money for research, as possible.
Nickie Davies, 47, is in constant pain, and is no longer able to speak, owing to the condition, but is still riding and caring for her horses, and said she will continue to do so as long as she can.
She has set up an Instagram page, MND Riding Warrior, in aid of the Motor Neurone Disease Association (MNDA).
“Wirral MNDA have been amazing with their support for me and my family,” she said.
“While I am still able to, I want to raise as much awareness and money for this charity in the hope that one day they will find a cure.
“I am doing a personal blog of my horse riding, which is a challenge to say the least as I find it harder now as this disease progresses but I will fight it all the way and hope with your support I can raise money to support others living with MND.”
Nickie told H&H she had Covid last January, then noticed she was excessively yawning in February, but no one could understand what was causing it. In August, her speech became slurred. Nickie was told the cause could be a brain tumour, after she suffered bad headaches, or the menopause.
“My GP knew how worried I was about MND and spoke to a neurologist, who said categorically that it wasn’t,” she said. “That was always my worst worry.”
Nickie had to wait from last December to this March to see a neurologist, who again told her she did not have MND.
“Then I saw him in July, and within five minutes, he said ‘Yes, it’s MND’,” she said. “My world fell apart.”
Nickie sees the neurologist every four months now, and the nurse every two, but says the MNDA has been “amazing” in its support.
“There’s only one medication available in the UK [riluzole, which slows the progression of MND on average from six to 19 months] but I couldn’t get out of bed, and I need to do the horses,” she said. “That’s my number one.”
Nickie started suffering pain in her legs after her diagnosis. She said she struggles to eat and drink now, and has to be careful to avoid choking, and gets breathless easily.
“I can’t do all I want to and I get tired very easily,” she said. “The pain is 24/7 and I need help to do the horses. It’s hard that I can’t do what I’ve always done; even lifting the saddle hurts now.”
Nickie rode her daughter’s pony last week, and had a canter, but felt “like I’d been hit by a bus” afterwards.
“They said MND is painless,” she said. “It’s not. Painkillers help, and heat helps, but I keep going – I just want to keep riding.”
As well as riding, Nickie’s main goals are to help others, to raise funds for the charity, and to raise awareness; she would like to work with sponsors or partners to help spread the word. One thing she is keen to promote is voice-banking, recording a person saying phrases, which they can use once their voice has gone.
“Until you’re diagnosed, you’re not offered that, and by the time I was diagnosed, my speech had gone,” she said. “I have got text to speech on my phone, but it’s not my voice – and it doesn’t help with shouting for the horses to come in!
“When I set up the MND Riding Warrior page, I wanted to help people; I love helping others, and I wanted to feel I was doing something. So many people don’t know about this disease, and anyone can get it.”
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