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'Coronavirus is a major worry' - man with Motor Neurone Disease on reality of being among most vulnerable

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Michael Byrne pictured with his wife Janet

Michael Byrne pictured with his wife Janet

Michael Byrne pictured with his wife Janet

MOTOR Neurone Disease patients who rank as the amongst the most vulnerable within the Irish healthcare system admitted the Covid-19 pandemic has been absolutely devastating for them.

Ireland's 412 MND sufferers were amongst the very first to go into precautionary 'cocoons' almost four weeks ago to protect themselves from the virus pandemic.

Now, patients are worried about going to hospital in case they catch the virus there - and have seen 'virtual' visits replace house calls from the dedicated team of four specialist nurses provided nationwide by the Irish Motor Neurone Disease Association (IMNDA).

The IMNDA has also, like dozens of other Irish charities, seen their vital fundraising effectively wiped out by the virus over the past month.

Michael Byrne (79) lives in Tramore, Waterford and was diagnosed with MND in 2015.

He lives with his wife, Janet (78), and admitted his primary fear is that he could fall ill and require hospitalisation.

"I have enough problems without having to go to hospital and maybe catch the virus there," he said.

"It is a worry - in fact, that is my major worry. I want to stay away from hospitals as best I can."

Michael's wife helps care for him and they are supported by two care assistants who visit twice daily.

"We just wouldn't manage without them. They help with getting me dressed and ready for bed, with showers and things like that."

While Michael relies on a battery-powered wheelchair, he is able to use a wheeled rollator, though his legs and arms have been significantly weakened by the disease.

He went into a precautionary 'cocoon' almost four weeks ago amid the very first indications that Ireland would be impacted by the Covid-19 pandemic.

"I am able to manage. I love reading. I also play bridge and watch the telly. But I have to go outside the house for some fresh air - I'd go cracked otherwise."

Specialist IMNDA nurse, Katie Kinsella, acknowledged it has been a very challenging time for MND patients.

"We have had to replace house visits with 'virtual' visits because of the cocooning," she said.

"Everything we do now has to be risk-assessed because of the pandemic."

Katie is one of four IMNDA nurses and she covers a vast area stretching from Wicklow to Kerry and west Cork.

With her colleagues, she normally visits patients on a regular basis and help them with everything from medical supports to general welfare.

"It is a palliative condition so supports, particularly psychological supports, are very important."

However, Covid-19 has resulted in all such visits being replaced by telephone calls or virtual visits via electronic platforms.

Ireland has around 412 patients with MND at any one time and their needs can vary dramatically.

"The pandemic has been very difficult for everyone but especially for MND patients. They are amongst the most vulnerable within the healthcare system."

If you would like to contact IMNDA you can via (076) 6805278 while donations can be made via text 50300.

Online Editors