mnd Archives - IMNDA | Irish Motor Neurone Disease Association


MND Global Day 21st June

Global Day

Every year the International Alliance of ALS/MND Associations marks 21st June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.






Brain Awareness Week 14th -20th March

National Brain Awareness Week will be here soon, and takes place this year from March 14th – 20th 2022. The theme is “Together We Are Stronger: Promoting the Value of Teams, Partnerships and Collaborations in Neurological Care and Research”. For more, please visit loveyourbrain

Coping with Grief this Christmas

Coping with grief when everyone else is celebrating can be incredibly difficult. We share a few simple suggestions to help you cope during the festive season.

Put yourself first

If you want to cover your house in decorations and go full-on Christmas, that’s fine. If you don’t want a hint of glitter or tinsel and want to ignore the season entirely whenever possible, that’s fine too. Christmas is a time for kindness, so the main thing that you should try and remember is to be kind to yourself, whatever that entails. Being honest with family and friends is crucial, and explaining what you feel comfortable with at this time of year.

You may not feel like you want to celebrate on the day at all; sometimes taking yourself out of the situation is the best thing you can do. That said, participating and laughing and smiling are also fine – it’s okay to feel happy when you’re bereaved.

Find some structure

Try and stick to some sort of routine over the festive season, if possible. It’s all too easy without our normal patterns to guide us to forget to look after ourselves. Whether it’s walking your dog at the same time each day, calling a relative each evening or reading another chapter of a book, some sort of structure and sense of routine can be helpful.

Allow yourself to grieve

You shouldn’t feel that you have to hide your grief over the festive season and pretend that everything is okay. Reaching out to someone and talking about the person you’ve lost can be helpful, be that family or friends who can share memories of that person, or connecting with a counsellor. Sharing your feelings may help you to cope, and make the season a little more bearable.

Celebrate their life

You may want to start some new traditions to remember your loved ones, or incorporate the person that has died into the traditions you already have, as a special way to remember them.

You might want to continue to hang their stocking in their honour, or create a ‘memory box’ to put out, with special items that remind you of that person.

You might decide to have a Christmas wreath at home, or even a small tree with special decorations that celebrate the life of the person you’ve lost. Some people still lay a place at the table to remember their loved ones, or you could cook their favourite festive meal in their honour or light a candle in their memory.


If you need to get support on this, our services team at IMNDA can offer advice, information, resources and support to help you and your family. You can call us on Freefone 1800 403 403 (9.00am-5.00pm, Monday – Thursday 9.00am – 4.00pm, Friday) or email we also have an online chat here

Sponsored Silence 2020

Sometimes Silence Speaks Volumes

Take part in our Sponsored Silence – 2020

Imagine an hour…a day….a week without speech.  Unfortunately that is the reality for approximately 80% of people living with Motor Neurone Disease.

Every February we ask people to take on a sponsored silence to experience what life is like for someone living with MND.  How would you cope not being able to communicate?

Just pick a day, time and location where you will take on your sponsored silence and then contact us on or 1800 403 403 for your Sponsored Silence Pack.

Help us spread awareness by sharing your sponsored silence on social media using #Voice4MND or change your profile picture to you holding our banner, which can be found here .  Nominate friends and families to join you – get your school or work colleagues to take part.

Nominate friends and families to join you. Sometimes silence can speak volumes.

You can also donate by texting MND to 50300 to donate €2. Text costs €2. IMNDA will receive a minimum of €1.80. Service Provider: LIKECHARITY. Helpline: 076 6805278.

A huge thank you to our Sponsored Silence Ambassador, Valerie O’Carroll. Valerie was diagnosed with MND in October 2019.  

Getting to Know Our Nurses – Louise Hennessy


It was the money raised from the late Fr Tony Coote’s 550km walk from Donegal to Cork that enabled IMNDA to hire a fourth full time nurse, Louise Hennessy. Louise joined the Association in April of 2018…

 ‘Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time, we become confidants and friends.’

Did you always want to be a nurse?

I actually wanted to be a teacher but I didn’t get the points! Nursing was a close second choice though. In one way I actually now have the best of both jobs. A major part of my role is to be an educator and advisor to our clients, families and MDT and I don’t have to deal with hormonal teenagers.

What do you do with the IMNDA?

My main role is to be an advocate to our clients and families. Clients and families can feel in limbo after receiving their diagnosis. There are no signposts on how to access services and help. This is where the IMNDA steps in to help guide our clients along this journey. We do this by visiting clients in their homes where they feel safe, not in clinical sterile areas where it can feel so impersonal. When we visit you, you are our only priority.

How long are you working with them?

I joined the IMNDA in April this year. It was only made possible by the mammoth fundraising efforts of the late, great Fr. Tony Coote.

What do you love about your job?

I love that it is challenging, interesting and makes a difference in people’s lives. Connecting with clients and their families and helping them through the good and bad times. I enjoy communicating with clients and helping them understand the disease and how it is effecting them and therefore how we can manage it and support the client and family.  I love the challenges and learning from each experience. You never know what the next phone call will entail. Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time we become confidants and friends due to the trust our clients place in us.It is a special privilege to fulfil these roles and to have people open up their homes and lives to you.

What challenges do you face in your role on a day to day basis?

The main challenges are access to services and support. By having clients referred and assessed in a timely manner can save many issues from happening further down the line.  Our aim is to make this journey as smooth as possible. By having the necessary supports in place and available to clients and families we can avoid a crisis and strain on the family.  We also face emotional challenges in supporting those who are near the end and the families of those that have passed. But with the support of our colleagues and MDT we can go on to care for our next client.

What do you think is lacking in the care/assistance for people living with MND?

There is major lack of help to keep people living safely at home with their families and friends. The HSE needs to invest more in to home care hours and respite to give our clients the support they deserve.  However, sometimes living at home is not suitable for some people so having the support of the hospice and long term care homes available in a timely manner is important.

The amount of paperwork people have to complete is mind boggling. Clients and family need access to necessary medications, benefits, allowances and services in a time sensitive manner but this is hindered due to the lengthy process of dealing with numerous departments and forms.

Do you think there is enough awareness of this terrible disease?

I think awareness is growing in recent years but there is more work to be done. Not only for fundraising efforts but for the medical field so people’s symptoms are picked up and they are diagnosed faster.  With recent campaigns such as Walk While You Can, Drink Tea for MND and the amazing Fr. Tony Coote it is in the public eye. I’ve heard a lot recently where someone has been newly diagnosed that they partook in the Ice Bucket Challenge and not knowing what it was really all for now to be needing those funds for equipment and services.

As you visit people living with MND in their own homes, how important is it to keep people at home?

Clients feel their happiest when they are in their own environment, their home and their community. By being able to live at home with the necessary supports they will have a better quality of life and be able to make lasting memories with their loved ones. Thankfully the IMNDA have amazing grants to help support people at home.

Finally, what impact does donations make to people living with MND?

Without donations we couldn’t do any of our work and therefore clients and families would be alone in this journey. Not only is providing equipment important but also provided support to the client and family. Our wonderful grants this year have been a benefit to every home I visit. Whether it be the day respite grant where a wife can go out meet her friends or attend an appointment for a while. The housekeeping grant also takes that extra burden and duty off a loved one so they can spend quality time with their family and friends. These moments of respite can be the difference in someone coping and not coping.






Benefit Céilí- Ennis

The O’Loughlin family is arranging a céilí in Cois na hAbhna, Ennis on Saturday the 2nd November. A great night of music and dancing guaranteed. Seisiún in bar at 7.30pm. All welcome.