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Getting to Know Our Nurses- Eithne Cawley

October 11th, 2019

‘I am honoured to be the custodian of such inspirational people. I am in a very privileged position, working alongside the IMNDA, Interdisciplinary teams, connected to primary & secondary care settings and above all Clients & their families.’ 

We have four full time nurses as part of the IMNDA team. One of which is Eithne Cawley who has

been part of IMNDA for 8 years. Over to you Eithne…

 

 

Did you always want to be a nurse?

I have always had an affinity towards the wellbeing of people and the values of compassion, care and commitment so yes, a nursing career path was the obvious choice.

A quote I recently was very privileged to receive from a special friend,

‘‘Love and compassion are necessities, not luxuries. Without them humanity cannot survive.

If you want others to be happy, practice compassion. If you want to be happy, practice compassion’’ – Dalai Lama

 

What do you do with the IMNDA?

Patient advocacy is true and centre of everything I do and I endeavour to address the needs of patients, embracing physical, social, clinical & spiritual elements.

I am the link in the provision of care from diagnosis, from secondary care to primary care and the wider circle of the multidisciplinary team. I focus on the enhancing the quality of life for the client and support for the family throughout the journey of MND.

I apply my nursing skills in a holistic client centered manor. Patient advocacy is key to my role.

How long are you working with IMNDA?

Since 2011

What do you love about your job?

I am honoured to be the custodian of such inspirational people. I am in a very privileged position, working alongside the IMNDA, Interdisciplinary teams, connected to primary & secondary care settings and above all Clients & their families.

I am also privileged to care for the unsung heroes, that is, clients, families and carers, as they embrace this courageous journey.

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

The emotional and psychological impact of receiving a life limiting condition can leave Clients & families devastated and indeed us as carers.

As a team of Nurses, together with multidisciplinary team, we support each other through the good times and the sad times.

The wonderful work that is provided by the support of the psychosocial teams guide us through the stormy waters.

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

A diagnosis of MND inevitably affects the wider family that are caring for their relative, whether they are partners, adult children or parents. As one lady said to me very recently ‘’this illness really is our illness, not just my husbands’’.

Dealing with the changing roles within the partnership and the household can be very stressful and some carers face very difficult decisions. Very often the loved one becomes the carer, providing much of the personal and physical care but at the same time this can be very demanding. Carers often report sheer physical hard work, disturbed sleep and exhaustion. One Lady recently told me ‘’getting to do the weekly messages was a privilege’’.

Thankfully the IMNDA can support the carer and families by supplementing home care packages, providing specialised equipment, counselling/psychotherapy support service.

 

Do you think there is enough awareness of this disease?

There is always room for improvement with awareness. High profile events such as Drink Tea for MND, The infamous Ice Bucket challenge and most recently Walk While You Can demonstrates the power of awareness, Irish humanity and generosity.  Creating awareness of MND is fundamental so that we can support Clients and Families on this journey.

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

Everyone’s home is their castle and we endeavour to keep our Clients close to those they love.

However, this may not always be possible if Clients requires specialised advanced nursing care.

Many people remain in their own home with community and multidisciplinary supports in place.

What impact does donations make to people living with MND?

With the absence of fundraising the outcome would be devastating for MND Clients and Families.

Donations received from the Irish people has resulted in providing a team of expert Nurses, home care support, equipment library, psychotherapy & most recently wellbeing therapies.

These essential funds enables our Clients to live a unique journey with hope and dignity.


November is My Legacy Month

October 10th, 2019

November is a good time to make your will and consider leaving a legacy gift to a cause you care about.

My Legacy was established in 2006 by a small group of Irish charities who knew at first hand the great impact a legacy gift can have on the work of a charity. They also realised that, unlike other countries, many Irish people do not make a will despite how important a life document it is. Since then, My Legacy has grown to an umbrella group of 65 Irish charities who work together to promote the great importance of making a will and to ask people to consider leaving a legacy gift to a favourite charity, once family and friends have been taken care of and all other important personal decisions have been made.

November welcomes the annual Autumn awareness campaign, My Legacy Month, a good time to take that first step in writing your will by making an appointment with a solicitor. My Legacy is grateful for the support of hundreds of solicitor firms all around the country who can offer expert guidance and advice about making or amending a will at any time of the year.

It is usually a much more straightforward and cost effective process than you might think; it will only take about an hour or so of your time. Your solicitor will discuss what is necessary for drawing up this important personal document when you make your appointment.

Once family and friends have been looked after and all other important personal decisions have been made, deciding to leave a legacy gift to a charity like the IMNDA is a wonderful way to support a favourite cause in the future. Large or small, every legacy is a generous gift of hope and trust for the future.

The IMNDA has gratefully received over half a million euros from gifts in people’s Will’s; an incredible amount of money which has made a huge impact to families dealing with MND.

Thank you for considering leaving a gift to the IMNDA.


Living with Loss (Dublin and Galway)

October 8th, 2019

The Irish Hospice Foundation will host two ‘Living with Loss’ public information evenings on bereavement in November.

This is an annual event, free of charge.  Living with Loss Dublin will be held on Thursday, 7th November 2019 at The Alex Hotel.  This year’s guest speaker is writer Emma Hayes.

On November 14, Living with Loss takes place in Galway. Author, journalist and radio presenter Meghann Scully will speak about the deaths of her father and brother and her own journey through loss and grief.

Both events are free to the public. No booking required.


Wedding Dress Ball

October 3rd, 2019

Wedding Dress Ball November 2 to raise funds for three worthy causes

PARTY LOVERS who want an excuse to get another wear out of their favourite little black number, that tailored suit or even their wedding dress or suit are encouraged to snap up tickets now for Kilkenny’s first ever Wedding Dress Ball.

The Samaritans, Irish Motor Neurone Disease Association and Carlow Kilkenny Home Care Team will all benefit from the exclusive event which runs in Kilkenny’s newly-refurbished Springhill Court Hotel on Saturday, November 2.

Tickets are limited, they cost €50 each and are on sale from the popular hotel for weddings and fun-filled gatherings or The Samaritans shop on Kieran Street in the city centre.

Organiser, Carmel Kenny, said while it’s a Wedding Dress Ball, anything goes.  “Which of us doesn’t want another opportunity to dress up in something that makes us look and feel good for a night with friends? This is the ideal opportunity to do that – and to support three fantastic charities.

“We chose all three charities that are very closer to everyone’s heart – three charities that do amazing work in Kilkenny and beyond. It will be a fairy tale evening from start to finish – starting out with a drinks reception at 7.30pm, a three course meal, live music with Loose Cannons followed by a DJ til late.

“November can be a long, dreary month. We want to inject a little sparkle and magic into November by starting on the right note with the first ever Wedding Dress Ball. It’s also a little motivator for anyone who wants to lose a few pounds to set a target, a real goal and fit back into something they once loved”.

Facebook page – WeddingDressBall

Twitter – @WDBallKK

Instagram – wdeddingdressballkk

wedding dress ball

 


Getting To Know Our Nurses

September 23rd, 2019

‘Every day brings a different challenge, whether it be time management, dealing with the unpredictability of the disease, or dealing with the sadness of losing someone to MND.’ 

We have four full time nurses as part of the IMNDA team. One of which is Fidelma Rutledge who has been part of IMNDA for 12 years. Over to you Fidelma…

 

Did you always want to be a nurse?

As a child I really wanted to be a bus driver. I’m not sure why now, every other child wanted to be a footballer, singer or teacher and my dream was to navigate the highways and byways of Ireland driving the biggest bus possible. I think I was about 15 when I decided nursing might be more for me.

What do you do with the IMNDA?

As part of the nursing service with the IMNDA we work with a cohort of people with MND from diagnosis onwards. We go through the various stages of the disease with them and try to pre-empt what the next stage is and to prepare them for it, whether it be equipment needs, communication requirements, changes in lifestyle or thinking ahead preparation we are there to advise and support someone through it. At all times we try to be proactive rather than reactive. Every day is vastly different for us so being flexible is essential. We are part of a multi-disciplinary  team in the community supporting the person with MND as well as supporting each other through the MND journey.

How long are you working with IMNDA? 

I started with the IMNDA in March 2007 as the only nurse with the association so have seen huge changes with the organisation in the last 12 years with the IMNDA going from strength to strength.

What do you love about your job?

The main thing I love about this job is the privileged position that we hold. People with MND allow us into their homes and to become part of their lives at the most difficult time and allow us to support them throughout their illness. They teach us that we should enjoy life and be grateful for our health. I have made some wonderful friends with people who have MND and their families and hope to continue to.

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

Every day brings a different challenge, whether it be time management, dealing with the unpredictability of the disease. Dealing with the sadness of losing someone to MND as you visit someone newly diagnosed with it.

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

I feel very sad for people as they grapple with filling out forms such as medical card application forms, primary medical cert forms etc as they come to terms with their diagnosis.  I would love to see a neurologist be able to fill out one form to ensure that any state intervention required could be assessed. Home help hours are imperative and have become a long standing issue at this stage and the lack of them. More respite beds would also greatly help people manage at home.

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

I think people are much more aware of the disease. However I feel that for a lot of people they have a perception that MND is absolutely horrific and many people say that it was their greatest fear ever to develop. I feel that it is imperative that we are honest and agree that it is a terrible disease but that people with MND can also have a really good quality of life and do remain an integral part of the family and community with support.  I always like people living with MND and their families to live in the moment and stop imagining what may or may not be coming in the future.

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

For the majority of people it is massively important for them to stay at home. It is imperative that the support is in place in a timely fashion so carers can tweak the way they care for someone as the condition progresses. It is imperative that palliative care are involved early in the care of someone in the community to ensure that symptoms are managed appropriately and it is also important that equipment is suitable for the progression of the disease. However it is imperative that we don’t take for granted that everyone wants to be at home for end of life care. For some they may want to be in the hospice rather than at home and for others who live alone long term care may be the preferred option.

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

As the main support for people living with MND the impact of donations to the IMNDA is massive. The equipment, home support, counselling, nursing service and telephone support service can be the difference between a family coping and not coping. A lady recently told me that our hours give her the ability to get her shopping done and without it her husband would have to go into a home. She was literally using 3 hours of a possible 6 per week from us and that’s what kept them together.


Walk While You Can ‘Brexercise’ Breaffy GAA

September 23rd, 2019

Breaffy GAA in Mayo, just on the outkirts of Castlebar, are hosting a Walk While You Can ‘Brexercise’ event on Sunday the 29th of September at 11am. A healthy breakfast will be provided afterwards.

All donations raised on the morning will go to – The Irish Motor Neurone Disease Association.
Further details from 087-7590622.

If you are in the area why not pop along for some ‘brexercise?’

 

 

 


Walk While You Can Kennedy Park Wexford

September 23rd, 2019

Are you free on Sunday the 29th of September? Walk While You Can 5K for MND takes place in Kennedy Park on Sunday the 29th of September at 11am. The meeting point is the cafe at the park.
All welcome to come along on the day or you can donate to this fantastic event below https://www.facebook.com/donate/711503982644465/

 

 

 


Encore Voices Charity Carol Singing

September 18th, 2019

Encore Voices are an established mixed voice choir of 70 members and are proud to support IMNDA as their chosen charity this season.

Encore Voices will be carol singing on Grafton Street, Saturday, December 7th from 11am – 1pm  Do come along and support this worthy festive fundraiser.


KBC Dublin City Marathon

September 18th, 2019

The 2019 Dublin City Marathon that is taking place on Sunday 27th October is SOLD OUT but if you have your place secured for the race and would like to support a charity to help get you through those 26 miles we would love to hear from you!

The IMNDA can send you sponsorship cards and a branded performance t-shirt. You might even like to fundraise online by setting up a page on www.everydayhero.ie – it’s very simple, just Click here to get started.

Run the race to make a difference for people with Motor Neurone Disease.


Coffee Morning

September 16th, 2019

All welcome to Cahir Park Golf Club on Saturday 12th October for a coffee morning from 10am to 1pm in aid of the IMNDA.

Delicious treats on the day and raffle and spot prizes. All donations and support welcome. Please contact John Cummins on 0872072211 for further information.

Thank you!

coffee morning


Walk While You Can in Louisburgh, Co Mayo

September 5th, 2019

There is a 5k Walk taking place on the grounds of Louisburgh GAA Club on 14th September, all welcome!

We are delighted to have Mayo behind Walk While You Can this September. Their 5k walk is taking place on 14th September at 12pm. Please arrive at 11:30am to register.

The walk will be taking place at Louisburgh GAA Club.

Thank you to all involved with the organisation. Please support this walk in the west if you are in the area!


Walk While You Can in Glandore, Co Cork

September 3rd, 2019

Glandore Plant Hire is very kindly supporting our 2019 Walk While You Can campaign and hosting a 5k walk in Glandore Village on Sunday 15th September.

Registration starts at the pier in Glandore at 11am and the walk starts at 12 noon.
The walk is starting at the pier in Glandore and will be taking a scenic 5k route close to the village. It is not a race and there are no prizes, the emphasis is on participating in a local event. There will be refreshments afterwards in Casey’s Bar, Glandore. Everyone who registers for the walk will be entered into a free draw for a hamper.
It is only €10 per adult, €5 per child or €20 per family.

Please go along and support what promises to be a super event.


RIP Fr. Tony Coote

August 29th, 2019

Following the death of Father Tony Coote, Chief Executive of the Irish Motor Neurone Disease Roisin Duffy said, “From the moment he was diagnosed, Father Tony Coote not only bore his illness with tremendous dignity, he also became a tireless advocate for everyone living with MND. His decision to travel 550 kilometres from Donegal to Cork last year was testament to his resilience and determination. The €600,000 raised is already making a real impact on Ireland’s MND community. On September 14th, that community will again “Walk While You Can” in Father Tony’s memory, as he would have wanted. To Father Tony’s family and wide circle of friends, we at the IMNDA offer our deepest sympathies at this difficult time. We pledge to honour his memory, and continue to support his vision for a world free of MND.”

Click here to donate in Fr. Tony’s memory.

Roisin Duffy and Fr. Tony Coote


London To Ballaghaderreen Cycle

August 28th, 2019

On 30th September 2019 a team of men and women will embark on the London to Ballaghaderreen Sponsored Bike Ride from The Claddagh Ring in North London, cycling up to Liverpool and across the Irish sea to Dublin are arriving at their final destination in Bealach An Doirín, Roscommon, Ireland on 5th October at 6pm (Est)

Reception at Ballaghaderreen GAA on arrival followed by A Celebration of Music & Craic in The Brusna Inn at 9pm. All are Welcome.

Local Cyclists:
Peter Kelly, Pat Towey, Padraig Mulligan, Barry Kelly,
Gary Conway, Pat O’Grady, Martin Coyle, Pat Phillips,
Paul Casey, Regina Casey, John Beirne

The team are aiming to raise £50,000 to provide the Irish Motor Neurone Disease Association with vital funding and to help support the Alzheimer’s Society. Donate at: https://www.justgiving.com/crowdfunding/l2b-bikeride?fbclid=IwAR3pBMP6fBPeEDb79dHfREYPS3eF8G05t3WfCoEbiC8pIBgmLER1gSWF_9s

Cycle

Cycle