Howard shares MND diagnosis
A campaign running throughout June is raising awareness and amplifying the voices of people living with Motor Neurone Disease (MND) in Ireland.
Called Voice4MND, it’s being organised by the Irish Motor Neurone Disease Association (IMNDA) and follows on from a recent IMNDA survey conducted among more than 100 people living with MND, shedding light on the challenges and experiences faced by this community, particularly around the issue of voice deterioration.
Kevin Burn, CEO of the IMNDA, said: “The survey results are a powerful testament to the challenges faced by those living with MND and their families. Our Voice4MND campaign is not just about raising awareness, but about driving real change. We are committed to ensuring that the voices of those affected by MND are heard and acted upon.”
The IMNDA is encouraging everyone to join Voice4MND any time this June and stay silent for a minimum of 30 minutes so they can experience what it would be like to lose their voice.
Howard Grice from Cork is an ambassador for this year's Voice4MND Campaign and is encouraging members of the public to take part.
He said his diagnosis took a bit of a circular route. “I’d noticed my speech was deteriorating in 2022 but I’d had Covid a few years earlier and I’d been diagnosed with a type of brain tumour, for which I’d received a course of radiotherapy affecting my hearing. When I spoke to my GP in 2023, he referred me to Cork University Hospital to undertake various tests. The thinking was that my speech may have been compromised by nerve damage following the radiotherapy for the tumour.
“It was agreed that I’d meet the neurologist again in a few months’ time but whilst waiting for my appointment, my speech continued to deteriorate, and I started to experience a ‘pins and needles’ sensation in my left arm. In October 2023, the neurologist concluded that it was likely that I had Motor Neurone Disease. I was referred to Professor Hardiman’s MND clinic in Beaumont Hospital, Dublin in December 2023 where the MND diagnosis was confirmed.”
He said the first few weeks following diagnosis were tough.
“A lot of emotional hurt, anger, fear, sadness and worry,” he said.
Howard continued: “Telling family and friends of the diagnosis was difficult; such conversations were exhausting, both physically and mentally. I’ve also been actively involved with a local rugby club for over twenty years, Muskerry RFC. The compassion and support I have received has been fantastic and a major boost to my confidence to remain actively involved. I have also received tremendous support from a spectrum of health professionals.”
He said: “My speech continues to deteriorate, my swallow function is getting worse, and my breathing isn’t as good as it used to be. But I continue to work and remain active. I still try and use my speech as much as I can, but I know I can be very difficult to understand sometimes. A few friends from overseas visited me a couple of weeks ago and took me out.
“We went into a well-known bar in Cork city and I ordered drinks. The barmaid declined to serve me and stated I’d had enough to drink. A friend of mine stepped in and explained that I have MND and my speech was affected. The poor barmaid was very apologetic and insisted the first round was on the house as a gesture of goodwill. It was a light, humorous moment but also brought home to me the reality of my situation.
“I use the SpeakUnique and Deaf Note apps on my phone to assist with communication and have found people to be very supportive and attentive when they realise your speech is challenged,” Howard concluded.