Education and Support Archives - IMNDA | Irish Motor Neurone Disease Association

Education and Support

TRICALS response to the approved RELYVRIO Drug in America 

TRICALS response to the approved RELYVRIO Drug for American Market. 

Food and Drug Administration (FDA) approves AMX0035 (Amylyx) for the American market.

During a meeting of the FDA’S Peripheral and Central Nervous System Drugs Advisory Committee (PCNSDAC) on Thursday September 29 2022, the Amylyx drug AMX0035 received conditional approval under the name RELYVRIO. This means that Relyvrio is available for American citizens. What does this approval mean and how does this affect patients in Europe?  

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Annual Conference Friday 7th October – online registration

We have the great pleasure of inviting you to our Annual Conference 2022, which will be held on Friday 7th October at the Charleville Park Hotel, Charleville, Co. Cork. We are delighted to be back having an in-person event. Although, if you are unable to be with us in person you can join us virtually.    (more…)

HAVE YOUR SAY

HAVE YOUR SAY and take a few minutes to complete our survey. Tell us about your personal access to services and support for your neurological condition. (more…)

2022 World Brain Day

World Brain Day takes place on 22nd July  and the theme this year is ‘Brain Health for All’

 

Awareness: Brain health is vital for mental, social and physical wellbeing

Advocacy: Global efforts are required for optimal brain health

Education: Education for all is key for brain health

Access: Equitable access to resources, treatment and rehabilitation is essential for brain health

 

 

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Guide My Way – Interactive Service for People with Reduced Mobility

 

Guide My Way – Dublin Airport

The Dublin Airport Future Factory team are looking for passengers arriving through Dublin airport this summer to try out their new interactive service. The Future Factory is Dublin Airport’s innovation and business development function.

The Future Factory Team carried out research and they saw the arriving journey doesn’t offer enough support to the PRM (Person with Reduced Mobility) passenger or those with additional needs. So, after a lot more research and discussions they came up with Guide My Way, an interactive digital service.

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Patients Deserve Better Campaign

 

 

 

 

 

 

 

 

 

 

Over thirty TDs and Senators attended a briefing on the Patients Deserve Better Campaign organised by the Neurological Alliance of Ireland on Wednesday 15th June.

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How’s it going – on-line survey

The NDA is an independent statutory body that provides information and advice to government regarding policies and practices relevant to the lives of disabled people. They have launched an online survey on wellbeing and social inclusion. The online survey is still open (www.howsitgoing.ie) and we would really appreciate your support in promoting awareness about the survey and encouraging people to complete it. There is also an option to complete the survey by telephone or in an Easy to Read format. For more information, please research@nda.ie

The Launch of Living with Motor Neurone Disease: A complete guide

Living with Motor Neurone Disease: A complete guide

Every two days someone on the island of Ireland is diagnosed with Motor Neurone Disease (MND). MND is a neurodegenerative condition in which the nerves that control voluntary muscles stop working. This affects ordinary everyday activities that we take for granted. Walking, talking, even breathing may become virtually impossible.

Being diagnosed with MND can be difficult which is why the Irish Motor Neurone Disease Association (IMNDA) has launched “Living with Motor Neurone Disease: A complete guide.” This publication is the first of its kind in Ireland. It is a vital resource, designed to provide all the information needed to negotiate a path through the challenges that MND may present.

Speaking at the launch in University College Dublin, RTE’s Claire Byrne said, “Navigating the path following a life changing diagnosis can be bewildering and exhausting. This wonderful book shines a guiding light on the road ahead with the experts who have walked it- the medics, the caregivers and, perhaps most importantly, those who are living with Motor Neurone Disease. I know this guide will provide some comfort to those who are starting on this road and their families, whose burden will only be eased if we all commit to supporting them.”

While MND is a rare disease it is a devastating diagnosis so good quality information from people who understand MND is vital. It takes time to learn about MND, to absorb the implications of it; to talk about it; to let family adjust to it; to help friends understand it and to learn to live a life that is altered in which the future is changed and the present is challenging. Living with Motor Neurone Disease: A complete guide is a practical and reassuring book at this time.

Speaking at the launch Lillian McGovern CEO, IMNDA said “We are delighted to have this book available for the families and carers of those with MND. The book provides practical information on managing MND and provides an insight into the many varying and challenging aspects of the illness. We hope that it will also inform healthcare professionals working with families in supporting them through their MND journey.”

Living with Motor Neurone Disease is a step-by-step guide. It explains what MND is, how it is diagnosed and managed; how it affects the individual and the family; the psychological dimensions of the condition; the caregiver experience; living with the condition and facing the future too. It shows how to talk to children and adolescents, how to tell family and friends, how to adapt working conditions and home life. It describes all the supports; medical, psychological, mechanical, technological and practical to cope with the daily impact of living with MND particularly the crucial supports provided and coordinated by the IMNDA.

Living with Motor Neurone Disease is the fourth book in the Cork University Press MindYourSelf book series edited by Clinical Psychologist Dr Marie Murray. A diagnosis of MND can be overwhelming so good quality information and support from people who understand MND is vital at this time.

Speaking at the Launch, Dr Marie Murray said “We hope that what emerges from reading this MindYourSelf book is not how grim MND is but how astonishingly people cope with it; how great the love of families for each other; how concerned are friends, how expert the professionals; how determined the researchers to crack the code, find the cure and blitz it into history. The book is dedicated to all who are living with MND and everyone it has bereaved. Having collaborated with the IMNDA for the past two years on this book there are insufficient superlatives to describe what the IMNDA provides in compassionate practical care – all based on its maxim ‘until there is a cure, there is care.”

Prof Joe Carthy commented “This wonderful book, which will be so helpful for anyone touched by MND, forms part of the great legacy of the late Fr. Tony Coote. Fr. Tony was an inspirational figure whose “Walk while you can” campaign did so much to raise funds and awareness of MND. The idea for writing the book came from conversations Marie had with Fr. Tony.”

Living with Motor Neurone Disease: A complete guide is available from Cork University Press €14.95 at www.corkuniversitypress.com or from www.imnda.ie Royalties to Irish Motor Neurone Disease Association
ENDS

For further details, please contact Derbhla Wynne pr@imnda.ie or call (083) 014 7549

Photos provided by Garrett White Photography

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.

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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 services@imnda.ie we also have an online chat here