A BLARNEY man living with Motor Neurone disease has explained the realities of living with the disease as part of a campaign to raise awareness of the disease.
Howard Grice from Tower, Blarney was diagnosed with the disease two years ago. He had noticed his speech deteriorating but it was originally thought that might have been caused by nerve damage from radiotherapy previously received for a brain tumour.
Subsequent meetings with a neurologist, further speech decline and ‘pins and needles’ in his arm followed, in December 2023 the MND diagnosis was confirmed.
‘Those first few weeks following diagnosis were tough. A lot of emotional hurt, anger, fear, sadness and worry,’ said Howard. ‘Telling family and friends of the diagnosis was difficult; such conversations were exhausting, both physically and mentally. I’ve also been actively involved with Muskerry rugby club for over 20 years. The compassion and support I have received has been fantastic and a major boost to my confidence to remain actively involved.’
Howard tries to continue to live his life as full as he can. ‘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 know I can be very difficult to understand sometimes. A few friends from overseas visited me a couple of weeks ago and 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 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. It was a light, humorous moment but also brought home to me the reality of my situation.’
Howard uses the SpeakUnique and Deaf Note apps on his phone to assist with communication. ‘I have found people to be very supportive and attentive when they realise your speech is challenged,’ he said.
‘I have also received tremendous support from a spectrum of health professionals; 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.’
The Irish Motor Neurone Disease Association (IMNDA) has launched its annual campaign, Voice4MND, to raise awareness and amplify the voices of people living with Motor Neurone Disease (MND) in Ireland.
See www.imnda.ie
