VHI Women’s Mini Marathon 2020

On Sunday 31st May 2020 thousands of women will take to the streets of south Dublin for the annual 10k mini marathon – are you going to join them?

Register your place today for just €25 per person by Clicking Here and run the race to make a difference. Once you have your place secured please drop us a line to get your sponsorship cards and IMNDA green t-shirt. We will be there on the day at our usual base upstairs in Toner’s Pub on Lower Baggot Street – near the start and finish line. IMNDA participants access only, leave your bags in a secure place whilst you pound the streets!

Don’t delay – start your WMM fundraising today! Just complete the form at the bottom of the page or email fundraising@imnda.ie / call Gemma or Jackie on 01 873 0422.

Register HERE for your Mini Marathon Pack

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Client Holistic Therapy Grant

Did you know the IMNDA is offering a grant that covers the cost of 6 holistic therapy sessions for our clients? Therapies like physiotherapy, reiki, reflexology, massage and acupuncture are all covered under this grant. All six sessions must be from the same provider.

What is holistic therapy?

‘Holistic’ comes from the Greek word holos, meaning ‘whole’. It is considered ‘an approach to health that considers the whole body and environment when offering treatment. It focuses on the mind, body and spirit of a person.’

Please note: The six sessions must all be availed of from the one provider.

We may ask recipients to complete a short feedback form to help to highlight the difference the grant has made. We appreciate you taking the time to complete this as it enables us to evaluate the impact of the grant.

If you would like to avail of this grant or have any further questions, please contact Johanna, our Information and Support Officer, on 01 871 7800 or services@imnda.ie.

The JAM Card (Just A Minute)

What is JAM Card and who is it for?

JAM Card allows people with a communication barrier tell others they need ‘Just A Minute’ discreetly and easily.

Transport for Ireland alongside Bus Éireann, Dublin Bus, Go-Ahead Ireland, Iarnród Éireann Irish Rail, Local Link and Luas are beginning the journey to becoming JAM Card friendly. The Jam Card will assist customers using the public transport system and make their experience as stress-free as possible.

We have JAM cards here in the office and if you wish to receive one, contact us at services@imnda.ie. The cards we have in available say ‘please be patient, I have a condition’.

The JAM Card allows users to relay to others that they may need a little extra time in a simple, effective non-verbal manner. The JAM Card is useful when on public transport, in a retail or any other customer facing environment.

The JAM Card© was created by NOW Group, a social enterprise that supports people with learning difficulties and autism into jobs with a future and their service users told them that they would like a way to relay to people that they need a little extra time or patience.

£170,000 (over €199,000) raised for the IMNDA

We are completely overwhelmed and incredibly grateful for the fundraising efforts of all involved with the London to Ballaghaderreen Cycle that took place in September.

This cycle brought in an astonishing £250,000 in total with £170,000 (over €199,00) presented to the IMNDA at the official cheque presentation which took place in The Claddagh Ring pub, London on Saturday 23rd November.

The bike ride was organised as a tribute to Frank Kelly (Motor Neurone Disease) and Joe Lynch (Alzheimers Society) and nobody could have predicted the level of support the cycle received!

We are truly blown away with the amount of funds the cycle generated; from the bottom of our hearts we want to say thank you thank you and thank you to all who took part, organised, donated and helped whether you were in London or Ireland. Together you have made such a difference to people living with MND.

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.

AGM 2019 Presentations- Professor Orla Hardiman

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Professor Orla Hardiman Head of Academic Unit of Neurology Trinity College gave her presentation MND- Time for Optimism.

Main Highlights:

What happens in a multidisciplinary clinic and what to expect
New developments and research to improve outcomes
Funding for TRICALS (trials consortium to cure ALS). Hopes €40 million will be raised in 5 years to provide a roadmap to new trials
In Ireland, €800,000 is needed over 3 years to participate in the first TRICALS trials
Investments made in staff in terms of talent and research
International genetic research into MND
New investigator led research

You can see the full presentation here- IMNDA Oct 2019 Orla Hardiman

Getting to Know Our Nurses- Katie Kinsella

‘It reaffirms my faith in people and motivates me to be a good nurse and to try and bring these values into my personal life.’

We have four full time nurses as part of the IMNDA team. One of which is Eithne Cawley who has been part of IMNDA since 2015. Over to you Katie…

Did you always want to be a nurse?

Yes, I wanted to be a nurse for as long as I can remember.

What do you do with the IMNDA?

I provide a nursing advisory and support role to patients and their families. I also work as part of the wider multidisciplinary team helping patients navigate their journey with this illness and through our Healthcare system.

How long are you working with them?

I joined the IMNDA in April 2015 as a result of the amazing Ice Bucket Awareness Campaign.

What do you love about your job?

I feel privileged to be of some support and help to people when they need it most. I am always amazed when I met a new patient and their family at how open they are and grateful for any advice and support. It reaffirms my faith in people and motivates be to be a good nurse and to try bring these values into my personal life.

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

MND is a tough diagnosis, meeting people that are just coming to terms with this huge change in their lives, when they are vulnerable and upset is challenging. I try to maintain professionalism with compassion, being honest and prompting hope for a good quality of life while maintaining respect and awareness for the person not just the patient who now has MND.

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

I think there are shortages in funding home care. There is also limited access to respite, but this is reflected across the HSE. Hence the need for the valuable role the IMNDA plays.

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

I think awareness is growing year on year. The generosity of many of our members has facilitated this through their work in our campaigns such as Sponsored Silence, Drink Tea for MND and many more.

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

Staying at home should be supported by the health service where possible, if this is what the person wants and it best suits their needs. I think more access to respite and home help would support relatives caring for their loved ones at home.

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

I think it makes them feel supported not just practically with services and equipment but more importantly emotionally. The donations to the IMNDA highlights the public commitment and willingness to go to extraordinary lengths to help those in need.

AGM 2019 Presentations- Family Carers Ireland

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Clare Duffy Policy and Public Affairs Manager with Family Carers Ireland.

Clare covered the following:

Who are Family Carers Ireland and what they do
Financial support for Carers
Policy and Legislation Development
Clare received a huge reaction from the floor when it came to telling carers what entitlements they are missing out on.

You can see the full presentation here- Clare Duffy Family Carers 2019

For anyone who wants to get in touch with the group, their Freephone number is 1800 24 07 24 or www.familycarers.ie

AGM 2019 Presentations- Central Remedial Clinic (CRC)

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Ciara Fitzsimons Senior Speech & Language Therapist of the Central Remedial Clinic.

Topics explored were:

Role of Assistive Technology and Specialised Seating Department (ATSS) in CRC
Assessment Process
Role of technology in MND
How to make technology accessible
Types of technology:
- Communication technology
- Ways of controlling computer
- Having control of technology at home
- Mobility Technology

You can read Ciara’s presentation below.

To get in touch with the CRC log onto www.crc.ie

Ciara Fitzsimons CRC-converted

Getting to Know Our Nurses- Eithne Cawley

‘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 psycho social 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 well-being therapies.

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

Getting To Know Our Nurses- Fidelma Rutledge

‘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.

RIP Fr. Tony Coote

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

Cycle Across America for WWYC

Shane Maguire is following in Fr Tony’s footsteps and taking on a massive challenge to help raise awareness and funds for MND. Shane is currently cycling ACROSS AMERICA! This is over 5000km and here is why:

Cycling across America was a challenge that I always wanted to take on some day. I’ve always been drawn to the big sky landscape, and to the contrasting terrain of the dry, mountainous west to the more fertile, farmland of the Mid-West and East.
Back in 2012, I remember watching Colm Murray’s documentary MND, The Inside Track…..and like so many people across the country I remember being in complete awe of Colm’s determination, courage and dignity in the face of unimaginable inner turmoil and suffering as he confronted the realities of living with Motor Neurone Disease.

Fr. Tony Coote’s Walk While You Can campaign last year really has helped place MND back into the public consciousness and it just highlighted how grossly underfunded Motor Neurone Disease is in this country and the financial burden it places on families. The IMNDA rely on public donations for over 83% of their funding and we seem to be lagging behind other countries of similar size such as Scotland who currently have 16 full time MND nurses compared to four in Ireland.

The extraordinary example of people like Com Murray, Fr. Tony and others succeeded to stir something in me to get outside my comfort zone and do what I can while I can.

To support Shane and his incredible challenge please see his idonate page: https://www.idonate.ie/fundraiser/11378133_cycle-across-america-2019-for-imnda.html

World Brain Day 2019

The Neurological Alliance of Ireland and the European Federation of Neurological Associations are coming together on World Brain Day, Monday July 22nd to focus on advocacy in Ireland and Europe on behalf of people with neurological conditions.

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Recharge Grant 2019

Do you know about our Recharge Grant? This amazing grant offers people with MND and their loves ones the opportunity to have a break from their usual routine and enjoy some quality time together. (more…)