Nickie initially put the symptom down to Covid (Picture: Nickie Davies/Liverpool Echo)
After Nickie Davies, from West Kirby, had Covid in January last year, she noticed she was yawning more regularly than usual.
The 47-year-old initially put this down to exhaustion or the ‘aftermath’ of the virus, but after 10 days it persisted and she was yawning continuously – up to ‘100 times a day’.
Speaking to the ECHO, Nickie said: ‘Roll on to July and August, the yawning was still there. I then noticed I was slurring my words but as I’d had a few teeth out and awaiting a partial denture I assumed it was to do with that.
‘Roll on to September and I started with headaches and went to the GP and brought up the yawning and speech, which would be affected mainly at night when I was tired. The doctor suggested HRT for me and I started on that.’
Nickie had read her symptoms could be linked with having Motor Neurone Disease (MND), but said doctors reassured her it wasn’t.
Following a neurology appointment in March this year, doctors believed she was dealing with a functional neurological disorder, a problem with how the brain receives and sends information to the rest of the body.
However, the mum’s worst fears were soon to be confirmed. On July 20, Nickie was told she had MND, an uncommon and currently incurable condition that affects the brain and nerves, causing weakness and progressively worsening.
‘My name was called and my mum, my partner and I walked into a room with the consultant and two nurses, I knew what the outcome was straight away,’ Nickie recalls of that day.
‘I had a brief examination of my strength and was told it was MND. The neurologist said he couldn’t tell me how long I had left as he would be wrong and everyone is different.
‘I felt like I just had to go. I couldn’t stay, I felt claustrophobic as my worst fears had come true. The lovely nurses took me into another room but I just couldn’t take in anything they were saying, I wanted to go back to not knowing but it was out there: I had motor neurone disease.’
Nickie now finds it harder to do the activities she once loved (Picture: Nickie Davies/Liverpool Echo)
Nickie said she cried a lot for two weeks, struggling to think of anything other than her diagnosis and how this was going to impact her loved ones, especially her 16-year-old daughter.
She explained: ‘It made me realise that nothing matters if you have good health. I kept thinking of those times I’d wish for more pay, a better car, to win the lottery and I never thought – I just wish for good health. You just take that for granted.
‘I couldn’t even talk about it or mention MND without crying. It came to a point where I thought I could sit and cry and feel sad or I could get up and get on with things and that is the path I have chosen.’
From there, Nickie’s strength grew, and she now says there is ‘no room in [her] life for negativity.
‘I have so much to be grateful for and I knew I had to remain in that mindset,’ she added.
Since the diagnosis, MND has impacted Nickie’s speech, meaning she has had to go off sick from the job she loves and finds socialising hard.
She said: ‘Eating is a struggle, so I have to watch what I eat because my tongue doesn’t work properly. I can’t move food around easily which could cause choking episodes and drinking is even worse. The likelihood of me getting a peg feeding tube fitted sooner than later as this disease progresses.
‘I get tired very easily and struggle to do the activities that I’ve always loved, but I concentrate on what I can do. I do try and make a joke of my speech as this is what works for me, it’s like a guessing game or charades every time I open my mouth.
‘I also have pains in my arms and legs but I push past this. I am a great horse lover and have three of my own, I have to rely now on family and friends to help me with them and have a plan in place for when I can no longer drive and see to them.’
Early symptoms of MND
According to the Motor Neurone Disease association, possible symptoms of MND can include:
Muscle twitching (known as fasciculation)
Tingling or pins and needles
Numbness in hands, feet or limbs
Fatigue or extreme tiredness
Tripping and one or both legs getting thinner
Dropping things due to weak or stiff hands
Slurred or faint speech
Swallowing difficulties
Breathing problems
Emotional outbursts (known as emotional lability)
Changes to thinking and behaviour
‘These do not all have to be present at the same time. However, as MND is not a common disease, these symptoms are more likely to be the result of another condition, injury or illness.
‘It is important to get checked by your GP first. This can take time if your GP needs to see how your symptoms progress.’
For more support and information, visit the MND Association website.
Her advice to anyone experiencing similar symptoms is to push for a neurology referral and to make memories while they can.
‘Anyone can get this awful disease, I considered myself to be healthy and it happened to me at 45, it can happen to anyone at any age,’ said Nickie.
‘My case is not familial. Generally, MND is believed to be caused because of a combination of environmental, lifestyle and genetic factors, and most cases of MND develop without an obvious cause.
‘Around one in 10 cases are “familial”, meaning the condition is inherited. This is due to a genetic mutation, or an error in the gene.
‘My advice to anyone is record your voice, this can be done by iPhone or any smartphone by recording your voice without any background noise (for example, not through a car as I learnt after having hours of recordings rejected).’
The mum said her family, boyfriend and friends have supported her all the way through her diagnosis and continue to do so.
They have also set up a GoFundMe page for donations towards Nickie’s bucket list and treatments, and are organising a charity event at the Railway Inn pub in Meols on Saturday February 3.
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Nickie would yawn up to 100 times a day.