‘A week after my youngest daughter’s 6th birthday I was diagnosed with Motor Neurone Disease’

“Last November, a week after my youngest daughter’s 6th birthday I was diagnosed with Motor Neurone Disease or ALS as it’s globally known. Devastated, heartbroken and frightened were among the many emotions I was feeling.

It started off with a change in my speech and a very subtle weakness in my right hand. I also had muscle cramping. Initially I thought I was imagining the symptoms as no one else noticed, but they persisted. I visited my GP, who is very thorough and she referred me to a consultant neurologist in St Vincent’s Hospital. Coincidentally, it’s the same consultant that my dad attends for his Parkinson’s diagnosis. The consultant did an initial examination and said yes, there is something but he was not sure what. An MRI scan ruled out MS. 

I became so frightened. Immediately MND came into my head. I started Googling symptoms and it turns out I was hitting most of them. Around this time the journalist, Charlie Bird, came out with his diagnosis. He had some of the same symptoms as me.

“I’m so sorry”

I was admitted to hospital for further tests. One in particular, called electromyographies (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (your motor neurons).

I came home and told my parents. I am their only child. There was complete devastation.

I was keen to be discharged from the hospital as it was my daughters 6th birthday the next day. The consultant asked me to come back the following Friday with my husband. I instinctively knew the news was not going to be good. We enjoyed my daughter’s birthday but I had a potential MND diagnosis in my head constantly.

Friday came, my husband and I met with the doctor. I could see he was bracing himself to deliver bad news. He mouthed the words ‘Motor Neurone Disease, I am so sorry.’ I burst into tears and quickly left the hospital.

Motor Neurone Disease, also known as amyotrophic lateral sclerosis (ALS), occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly. This is known as neurodegeneration. Motor neurones control important muscle activity, such as: gripping, walking and swallowing. 

I came home and told my parents. I am their only child. There was complete devastation. I was so frightened. I thought it was men in their 60’s who got this awful condition. I remember Father Tony Coot in our Parish. A beautiful man who was dead within one year.

I can’t plait my daughters hair as my fine motor skills are weak. However every day I get up, put on my  make up and enjoy life. 

Immediately though, I was linked in with the wonderful MND Team in Beaumont Hospital.

Outcomes

This clinic at Beaumont Hospital is under the leadership of renowned neurologist and world leader in this field Professor Orla Hardiman. It is the National Motor Neurone Disease clinic and provides a multidisciplinary team service.

This means patients meet members of the MND team including doctors, Nurse specialists, physiotherapists, Occupational therapists, Speech and language therapists, Dietitians, neuroscientists and neuropsychologists. Specialist clinics of this kind have been proven to improve quality of life and outcomes for patients. 

These are exciting times in the world of MND research with many promising drug trials underway and due to begin in the coming months I am engaged on a drug trial with Beaumont. However as with all drug trials I do not know if I am getting the placebo or the drug. 

Support

I thought I had been given my challenge when I gave birth to my first baby who has Down syndrome. However he has turned out to be my joy.

Roll on one year since my diagnosis. My speech is weak and my walking is slow. I can’t wear heels and being 5ft 3, that’s a pain. I can’t go for walks which I enjoyed so much. I can’t plait my daughters hair as my fine motor skills are weak. However every day I get up, put on my make up and enjoy life. 

I am lucky to have a job that I adore. I work in Together Academy, a project for young adults with Down Syndrome. My work partner is the most amazing colleague and friend. I have a fantastic family and friend network who have supported me since my diagnosis. I feel lucky to have them. 

I brought my youngest to get her ears pierced so she will always remember that.

I am determined to beat this awful disease with positivity. I thought I had been given my challenge when I gave birth to my first baby who has Down syndrome. However he has turned out to be my joy. In 2012, I contracted sepsis after giving birth to my second daughter. Life has now thrown me the biggest curveball of all. 

We recently told the children about the diagnosis. My youngest daughter does not really understand, nor does my son with DS. However my daughter who is nearly eleven was very upset and asked me would I be alive when she is 15.

Honest

We took advice on how to break the news to them and the main thing is to be honest. I am so thankful that I have time to make lots of memories. I brought my youngest to get her ears pierced so she will always remember that. I have been away eight times this year both with my family and friends.

I would love to be around to hear about my daughter’s first kiss or wipe away the tears when they get their hearts broken. I’d love to see my son go on his first date and to graduate. I am jealous of couples I see who are retired and spending time together. Old age is certainly a privilege.

But right now, I love my life and I plan to be here for a long time.”

You can find more information on MND here. Thank you so much to Cathy for sharing her story. 

This article was originally published in November 2022.