When Amanda Parkes, 62, developed a cough over Christmas in December 2021, she assumed it was Covid.
The registered nurse had been caring for her mother, who was ‘very poorly’ with the virus. ‘I thought that was what was wrong with me too,’ she says.
But Amanda didn’t have Covid. She had Progressive Bulbar Palsy – a form of Motor Neurone Disease, which has a life expectancy of six months to three years.
The mum-of-two, from the West Midlands, is now unable to speak or swallow.
Amanda tells Metro.co.uk via email: ‘My journey started in December 2021 when I developed a cough.
‘I have worked as a registered nurse for 44 years and went to work after the Christmas break as normal.
‘The cough shifted into difficulty swallowing, followed by starting to lose my voice.’
By April 2022 Amanda had had many GP appointments because of how unwell she had been feeling, and finally she had a private consultation with an ear, nose and throat specialist at her local hospital.
At this point Amanda was misdiagnosed with muscle tension dysphonia and she hadn’t yet lost the ability to speak.
Unfortunately, Amanda’s health kept declining. She says: ‘My symptoms worsened and I was finding it difficult to swallow, losing approximately 2lb in weight each week.
‘By the summer I had an appointment with a speech therapist who noted that my tongue was twitching, which I hadn’t noticed (believe it or not).’
As a result of that appointment Amanda was offered an urgent consultation with a neurologist in autumn 2022.
She says: ‘I already had some suspicions that it was something more serious but I
thought that it would never happen to me.
‘I was given my diagnosis in November 2022 of Bulbar Palsy MND. It has turned my world upside down.’
But Amanda adds it’s not just her life that has changed because of her diagnosis, she has two grown-up daughters Laura Arnold, 39, and Jess Brooks, 35, five granddaughters and her husband Joe, 64, to think about.
‘I had to break this news to them. The impact this has had on them is devastating and for that I feel really guilty,’ says Amanda.
She continued to work as a nurse until September 2022 but had to go off sick with the hope she could return to it, however that has not been possible.
Amanda says: ‘The impact of not being able to carry on working has been horrible. Nursing has been my life and although I only worked two days per week, I loved my job and miss it terribly.
‘Now I have many appointments to attend for support. I have a huge problem with thick saliva, which is difficult to keep in my mouth and I am yet to have this under control.
‘I have every contraption you can imagine; nebuliser, suction machine, sleep machine – you name it, I’ve got it. For that I am very grateful as they all help to keep me alive.
‘I can no longer speak or swallow and when I had a percutaneous endoscopic gastrostomy (PEG) fitted in February 2023 my weight had plummeted from 11st 7lb one year ago to now being 7st.
‘I have applied to be part of the SMART trial, which is trialling new drugs to slow down the symptoms and progression of this awful disease. I am still waiting to hear back.’
Despite receiving such a traumatic diagnosis Amanda says her family have been really supportive.
What is Progressive bulbar palsy MND?
Bulbar Palsy MND is different to the most common form of MND is known as Amyotrophic Lateral Sclerosis (ALS).
ALS includes weakness and wasting in the limbs and muscle stiffness and cramps. Someone may notice they are tripping when walking or dropping things.
With ALS life expectancy is usually two to five years from the onset of symptoms, however Progressive Bulbar Palsy MND (PBP) only has a life expectancy of between six months and three years from the onset of symptoms.
PBP affects a smaller number of people than ALS and mainly affects the muscles of the face, throat and tongue.
Early symptoms may include slurring of speech or difficulty swallowing.
She adds: ‘My husband is amazing and I know that his heart is breaking as much as mine.
‘My girls are amazing and support us both despite having their own children and full-time jobs. The impact this disease has on families is enormous.’
Amanda is keen to raise awareness when it comes to women suffering with MND because she feels it’s more commonly spoken about when it’s men who are diagnosed.
She says: ‘The under representation of women with MND has to be addressed. Much more focus on MND needs to happen and made public because without that a cure will never be found.
‘I stay hopeful and every day is a bonus with my wonderful family and friends. We laugh and cry together but that’s the point, we are together.’
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