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Howard Grice's Story of MND

Howard has kindly agreed to be an ambassador for this year's Voice4MND Campaign and share his story of MND.

"My diagnosis of Motor Neuron Disease took a bit of a circular route. I’d noticed my speech was deteriorating in 2022 but I’d had Covid and then a tooth extraction and was applying the old “lets wait and see if it gets better” approach. It didn’t, instead, it continued to get worse. A few years earlier I’d been diagnosed with an acoustic neuroma, a type of brain tumour, for which I’d received a course of radiotherapy. The tumour had affected my hearing and I am profoundly deaf in one ear, and severely deaf in the other. When I spoke to my GP about my deteriorating speech in 2023, we both wondered if it was in anyway caused by my tumour but to be safe he referred me to Cork University Hospital where I was admitted for a few days to undertake various tests.
When I was discharged from hospital in May 2023, the thinking at the time 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 to review the test results and see if anything changed in the meantime.
Unfortunately, whilst waiting for my follow up appointment, my speech continued to deteriorate, and I started to experience a “pins and needles” type sensation in my left arm. At my follow up appointment in October 2023 the neurologist concluded that it was likely that I had Motor Neuron Disease. I was referred to Professor Hardiman’s MND clinic in Beaumont Hospital, Dublin in December 2023 where the MND diagnosis was confirmed.
Those first few weeks following diagnosis were tough. A lot of emotional hurt, anger, fear, sadness, worry…the type of stuff that messes with your head and keeps you awake in the small hours with dark thoughts. I resisted the temptation to scour the internet and decided to take my information from health professionals who worked with MND.

"The compassion and support I have received from the folks involved with the club has been fantastic and a major boost to my confidence to remain actively involved."

When I had first experienced my deafness, I received a lot of support from the Cork Deaf Association, and they gave me the confidence to embrace the change in my situation and not to hide myself away but to go out and continue living life and learn how to deal with challenging situations in such a way that I could cope with them. This stood me in good stead with the MND diagnosis and I was determined to adopt a similar approach.

Telling family and friends of the diagnosis was difficult; both because of my speech issues and also the emotion that would rise to the surface during the discussion. And such conversations were exhausting, both physically and mentally. I’ve been actively involved with a local rugby club for over twenty years, Muskerry RFC, and know a lot of people through the club. I couldn’t possible tell everyone individually of my situation so asked two people to speak with players and committee members to update them on my situation. The compassion and support I have received from the folks involved with the club has been fantastic and a major boost to my confidence to remain actively involved.  My thanks to everyone there and a special mention to the club President and the Head Coach who agreed to help in speaking to everyone on my behalf.

"This pool of neurologists, speech and language therapists, dieticians, physiotherapists, nurses, occupational therapists, social workers and others offer not only professional advice but help you realise you’re not alone on your journey."

Personal contacts aside, I have also received tremendous support from a spectrum of health professionals; the multi-disciplinary teams at the MND clinics in both Beaumont and Cork University hospitals, the community health care team at St Marys Health Campus in Cork and the Irish Motor Neurone Disease Association. This pool of neurologists, speech and language therapists, dieticians, physiotherapists, nurses, occupational therapists, social workers and others offer not only professional advice but help you realise you’re not alone on your journey. Knowing there are people you can call on for assistance is a great help, metaphorically you’re holding someone’s hand whilst walking down a sometimes dark and difficult path, and that is very reassuring when you’re feeling vulnerable.

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 enjoy being outdoors and spend most of my recreational time hill-walking, helping out at the rugby club and in the garden.

"Life goes on, it’s a constant process of adaptation and some days are better than others, but I’m determined to enjoy the moment and am forever grateful to everyone who helps me along the way to achieving that."

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 mortified, very apologetic and insisted the first round was on the house as a gesture of goodwill. It was a light, humorous moment (although not for her) but brought home to me the reality of my situation.
I still try and use my speech as much as I can, but I know I can be very difficult to understand sometimes. 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.
MND support has received some high-profile coverage recently with the likes of Charlie Bird in Ireland and Kevin Sinfield in the UK doing fantastic work to highlight the condition and raise much needed funding for support organisations. They have been the “public face” of an extensive network of individuals, often unseen by the public, who support people like me, my family and others with MND.
Life goes on, it’s a constant process of adaptation and some days are better than others, but I’m determined to enjoy the moment and am forever grateful to everyone who helps me along the way to achieving that."