There are currently less than 400 people living with motor neurone disease (MND) in Ireland. These figures may be low but the progressive neurological condition, which attacks the motor neurones (nerves) in the brain and spinal cord, can strike at any age. And while wasting and weakness of the limbs is a common characteristic, it also affects the muscles in the tongue, which can cause slurring of speech or for some, the loss of speech altogether.
This month, The Irish Motor Neurone Disease Association (IMNDA) is running a sponsored silence campaign. It is encouraging people to stay silent for a minimum of 30 minutes to experience what it is like to be unable to communicate.
Valerie O'Carroll lives in dread of this happening, as last year the 57-year-old was diagnosed with MND after her husband noticed that she was slurring her words.
"During the summer of 2018, my voice started to get a little strange," says the mother-of-three. "I was speaking a lot slower and slurring my words a bit and my husband picked up on it and asked what was wrong.
"I tried to brush it off, but he kept nagging me to go to the doctor. Like most women, I put it on the back burner and just got on with things as I thought I would wait until I had something more serious to ask the doctor about - but eventually I gave in and went to my GP in November of that same year.
"Initially the doctor thought I had suffered a mini stroke and sent me down to A&E so I could get checked out properly. But after having every test under the sun, they couldn't find any evidence of a stroke, so I was sent home."
As the weeks and months went on, Valerie, who is married to Kieran, saw a variety of different specialists but no one could determine what the matter was. Then in October of last year, she finally received the shocking news that she had motor neurone disease.
"After seeing a throat specialist and a speech therapist, I was sent to see a neurologist who did a number of tests and then told me that I was being referred to Professor Orla Hardiman. I looked her up online and, having also Googled my symptoms over the previous months, I kept seeing the words MND, but I refused to believe that it could have anything to do with me.
"But sure enough when I had my appointment with Professor Hardiman, she told me that this was indeed what I had. Kieran was with me and we were both utterly devastated. I had never told him what I had found out online, so it was a total shock to him and we both found it so hard to believe it.
"Breaking it to my kids was particularly difficult, even though they are all adults, as it just didn't seem possible that I could have such a devastating condition."
There is no cure for MND, and it is a life-limiting condition, but the Dublin woman was put on a course of medication which would hopefully slow down its progress.
She feels her symptoms have plateaued and while waiting to take part in a drug trial, which she hopes will keep the disease at bay for longer, Valerie is determined to make the most of her life.
"Needless to say, we were all shocked and distressed by my diagnosis but I am a positive person so I decided that I could either lay down and not get up again or I could grab hold of the life I have been given and live it to the best of my ability, which is what I decided to do," she says.
"I am trying to encourage the family to be the same way - my children are managing well as they are taking my lead but sometimes I wonder about Kieran as, like most men, he doesn't say much and I worry that he is bottling too much in because he knows that if he gets upset, so will I.
"However, we are putting on a good front and things are positive at the moment. The symptoms haven't worsened, I can still move, and I can still make myself understood. I am also still working full-time [in a family resource centre] and my colleagues say they don't notice me being any different.
"I will be going on a trial drug at the end of this month which will hopefully slow things down even further and I have planned to go on the Camino in May with my friends from work, so I'm still making plans and looking to the future - it's all I can do. Each morning when I wake, I check my legs and arms to see if I can move them and then I force myself up and out of the bed to face the day."
Despite her positivity, a diagnosis of MND can be very difficult to accept and Valerie would advise anyone who has just been diagnosed to seek help and open up about fears.
"Being told you have MND is absolutely shocking and I would never undermine the devastation people undoubtedly feel when they find out," she says. "But I really believe we have to try and be positive to make the most out of life, so people should surround themselves with others who will support them rather than bring them down.
"Also I would encourage them to go to the IMNDA for help - they are absolutely fantastic, and I would have been lost without them. They have given me advice, support, counselling and holistic therapy even though there are only four nurses looking after everyone in the country with MND.
"Which is why I would ask people to get involved in the sponsored silence as they need all the support they can get. Thankfully I still have my voice, but I don't know how long for and I know that the reality is dreadful for those who have lost theirs through this disease."
Specialist nurse Louise Hennessy agrees: "MND is a progressive, life-limiting disease and the rate of progression varies greatly from one person to another," she says. "This is variable from three to five years [or occasionally longer] after onset, depending on the activity of the disease and the particular muscle groups affected. There is currently no cure but there is one licensed drug which has shown to slow progression of symptoms and prolong survival - so investment into research and drug trials is vital.
"Symptoms are generally well managed under the care of specialist palliative care, neurologist, primary care team and specialist multidisciplinary team. And all we ask with the campaign is that you stay silent for a minimum of 30 minutes so you can experience what it would be like to lose your voice. Imagine one hour, one day, one week without your voice.
"All you have to do is pick a day and duration for your silence. Then maybe think, if you had no voice for a day how would you communicate? Sometimes silence can speak volumes. Take on our challenge this February, lose your voice so that others can be heard."
MND nurse Louise Hennessy explains the disease:
⬤ There are currently 360 people living in Ireland with MND
⬤ It strikes people of all ages - most who develop MND are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis
⬤ The cause of the disease is not known but there may be environmental factors which trigger the damage in those who are susceptible to MND. Ongoing research is necessary to find out the nature of these factors, and what makes one person more susceptible than another.
⬤ Approximately 15pc of people diagnosed with MND will have an inherited, or familial, form. This form of MND is extremely rare as the great majority of people diagnosed with MND (85pc) have the sporadic form.
⬤ MND presents itself in various ways, depending on the particular groups of muscle fibres which degenerate initially. Wasting and weakness of muscles of the hands, sometimes one side a first, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom.
⬤ Sometimes the muscles of the tongue and swallowing mechanism are affected early, with slurring of speech, difficulty in swallowing and coughing.
⬤The disease may remain relatively stationary for some time or may progress to other limbs, to the tongue and to the breathing muscles. It does not cause bladder or bowel symptoms and does not cause sensory, visual or hearing disorders.
To get involved in the Sponsored Silence campaign, email email@example.com for your silence pack. Spread awareness by sharing your sponsored silence on social media #Voice4MND. You can also donate by texting MND to 50300 to donate €2 (100pc of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278). See imnda.ie
Health & Living