‘I was given a death sentence of 1000 days’ – Mum on her devastating Motor Neuron Disease (MND) diagnosis

Sharon Friel (42) can’t do anything for herself.

She cannot walk or talk. She cannot scratch an infuriating itch, or wipe a sorrowful tear from her eye. She cannot use a tissue when her nose drips, and she’s unable to give her little boy a hug. All because she has a particularly pernicious condition that is slowly robbing her of all physical movement.

Her current dependent status has been inexorably building steam since 2012, when Sharon, who was then CEO of the Baldoyle and Portmarnock Credit Union, began getting cramps in her legs. Following numerous examinations, a neurologist admitted he couldn’t rule out motor neurone disease (MND) as a possible cause. “We were absolutely devastated,” says Margaret Murphy, Sharon’s supportive mother. “At the very worst, we thought it might be multiple sclerosis (MS), but not this.” Sadly, three weeks later, MND was officially confirmed. In her poignant but also surprisingly humorous blog, Sharon says, “On the 23rd August 2012, I was diagnosed with MND. There it was, a death sentence; my death sentence, with an expected term of 1,000 days. But it wasn’t only me that was dealt a blow that fateful day. My husband and son lost the promise of a happy future. The eerie presence of bad news hung over all of us”.

According to Maeve Leahy, communications executive for the Irish Motor Neurone Disease Association (IMNDA), this is a “progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This causes messages to gradually stop reaching muscles, which leads to weakness and wasting. There is currently no cure.”

This means Sharon is never going to be able to scratch that itch, or change her position when her body aches. On the other hand, the “expected term” of 1,000 days has long passed, and Sharon is still going strong. But it has been, and continues to be, a very tough, emotional journey.

When she was 39, this previously fiercely independent woman found herself having to share her most intimate rituals with strangers. “The lack of privacy surrounding my bowels is just the tip of the iceberg,” she says. “My daily shower is a group affair. Fortunately, I have wonderful carers who make me feel comfortable sitting in the nip, while still being able to have a laugh. They have made the abnormal feel normal for me. That fateful day, when my independence sailed off into the sunset, it wasn’t alone,” she says. “Privacy and autonomy were part of the flotilla.” One of Sharon’s greatest sorrows is not being able to have a good bawl in private. MND exaggerates her emotions, so when she’s down, it’s “full-on snots and tears”. The other things she misses are petting the dog, her fingers encircling a hot cup of tea on a cold day, giving her son a hug, and clasping her husband’s hand.

But in spite of all this, she doesn’t lose heart. “I cope because I have no other choice,” she says philosophically. “MND has taken away so much from me. But I fight every day to hold on to whatever quality of life I’ve been left with. I do have dark days; but I’m surrounded by a loving family who make this nightmare bearable.”

Without a doubt, Sharon’s most profound regret concerns her son, Senan. “I’m devastated I can’t be the mother I always dreamt of being,” she says. “But I’m still determined to give him everything I possibly can; that’s what drives me. I live in the present; one day at a time. I can only cope with the here and now. Five years on, I’m still alive and still getting joy and meaning from life.”

Sensibly, she makes the best of what she does have. Her most vital tools in this regard are her razor-sharp mind, complemented by a sizable dollop of common sense. She is also fortunate to have Conall, her “amazingly loving husband”, devoted father and carer, who also manages to work full time, and her equally supportive mother, as her principal carers. Meanwhile, eight-year-old Senan brings much joy into her life.

“Our golden-haired boy continues to make us smile,” says Sharon. “For almost half his life, all he has known is the diseased me. He can barely remember when I walked unaided and spoke with an unslurred voice. Happy-ever-after was stolen from our sweet, innocent boy.”

One of Sharon and Conall’s biggest concerns was how to prepare their son for the seemingly inevitable. Fortunately, they got invaluable advice from the owner of the creche their son attended. “Explain a little bit at a time, in simple language,” she counselled. “This allows us to support him emotionally and to gauge his concerns,” explains Sharon. “Many times, it’s his innocent approach to my condition that teaches us how to cope.”

She says that children in times of crisis need ongoing love and support, and fortunately Senan gets that in spades from school, his former creche, Sharon’s loyal carers, family and friends. The day before this interview, he had the guts to stand before fellow pupils at their Educate Together school in Donabate, to explain how his mother communicates without speech or movement; in fact, she can’t even nod her head any more. He told them how her Eyegaze machine works. A monitor perched in front of Sharon’s face displays the alphabet. She focuses on a particular letter, and the software registers it and types it on the screen. Sharon moves to the next letter, until the word is complete. Predictive text speeds up the process, while the words on the screen are enunciated. Hey, presto! She has a voice after all, and she uses it well. She is mistress of the insightful quip and the humorous comment.

Sharon is immensely grateful for this lifeline to the outside world, which has been facilitated by the IMNDA. They have also loaned her other expensive equipment.

“We provide specialised services for some of the 360 people in Ireland living with this debilitating disease,” says Maeve Leahy. “The generosity of the public provides 86pc of our funding.” She hopes the Drink Tea for MND campaign, launched this month, will generate much-needed revenue. Naturally the inimitable, warm-hearted and most generous Sharon supports them all the way.

Text MND to 50300 to make a €2 “tea donation”. See imnda.ie
To read Sharon’s blog: ‘Wheelie me – still me!’, see sharonfriel.wordpress.com

Sunday Indo Life Magazine

Source: http://m.independent.ie/life/health-wellbeing/health-features/i-was-given-a-death-sentence-of-1000-days-mum-on-her-devastating-motor-neuron-disease-mnd-diagnosis-35845602.html

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