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.”

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

Living Well – Building Better Caregivers

DCU Caregivers Survey

“Are you a caregiver for a person with a neurodegenerative disease? DCU School of Psychology is running a study to examine the psychological well-being and post-traumatic growth of family caregivers of people with neurodegenerative diseases. They would appreciate it if you could get involved.

For details and survey click the following link: https://dcupsychology.fra1.qualtrics.com/jfe/form/SV_ebb7RXaVWTHfBhc

Patients Deserve Better Campaign – Waterford

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

32nd International Symposium on ALS/MND

The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year brings together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease.

This year’s event takes place between 7 – 10 December 2021. For more information on this event, please visit here

ALS/MND Connect is organised each year by the International Alliance of ALS/MND Associations. It’s an open session which allows people living with ALS/MND and their caregivers to attend presentations by neurologists and researchers. This session is live-streamed on Facebook, so people with ALS/MND from around the world can attend and ask questions online.

This session kicked off by Dr. Felipe Ocampo, Moderated by Dr. Nortina Shahrizaila, and this year’s panelists include Dr. Terry Heiman-Patterson, Prof. Orla Hardiman, and Dr. Angela Genge.

In case you missed it and want to catch up again you can view what went on here

EUpALS information : TRICALS Masterclass 2022 postponed

Due to the worsening Covid-19 situation around the world, we unfortunately have no option but to postpone the TRICALS Masterclass: Back on the road again, 12-14 January 2022.

We are very disappointed that we cannot meet as planned in January. Given that this Masterclass aims to encourage active participation by all delegates, we have decided against a virtual meeting and instead to reschedule to a later date in 2022. We hope to communicate a new date for the TRICALS Masterclass 2022 shortly. We very much look forward to welcoming you and to discuss innovations in clinical trial design for ALS in person.

Please note that the registration is closed for now and will be opened again once the new date of the TRICALS Masterclass 2022 has been communicated. Registrations that already have been made, will stay valid for the TRICALS Masterclass 2022 which will take place later on in 2022.

We apologize for any inconvenience caused. If you have any questions, please send them to events@tricals.org.

On behalf of the TRICALS consortium, yours sincerely,

Prof. Leonard H. van den Berg & Prof. Orla Hardiman (Chairs of TRICALS)
www.tricals.org

Living with Motor Neurone Disease: A complete guide

Every two days someone on the island of Ireland is diagnosed with motor neurone disease MND which is a neurodegenerative condition in which the nerves that control voluntary muscles stop working. This means that messages gradually stop reaching the muscles, which leads to weakness and wasting that affects the ordinary everyday activities that we take for granted. This is why Living with Motor Neurone Disease: A complete guide is designed to help anyone diagnosed with the disease, their family and friends to navigate their way through the progressive complexities that living with MND poses for everyone. It is also a must-read book for all health care professionals.

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. Written in collaboration with The Irish Motor Neurone Association, by many of the most distinguished Irish experts on MND it is a book that shows the extraordinary power of multidisciplinary professionals working together to support people diagnosed with MND and their carers. It is a guide on how to live ‘with’ MND with the highest quality of life that is possible for as long as possible.

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 Irish Motor Neurone Association of Ireland IMNDA.

With chapters by acclaimed authorities on MND such as Professor Orla Hardiman; Professor Peter Bede, with Dr Stacey Li Hi Shing and Dr Jasmin Lope on diagnosis and management; clinical nurse specialist Bernie Corr on the profound impact of the diagnosis, and neuropsychologists Dr Niall Pender and Dr Marta Pinto-Grau on cognitive changes, the book also has advice on accessing services, on family dynamics, on the role of carer, on legal matters and most poignantly a chapter by the late Andy Minogue whose life may have ended but whose legacy on how to cope with MND lives on.

Living with Motor Neurone Disease: A complete guide is edited by Dr Marie Murray, and published by Cork University Press as part of its MindYourSelf series https://mindyourselfbooks.ie All royalties are dedicated to the IMNDA

Copies of the book are available here

Virtual AGM & Conference 2021 – Presentations

The Virtual AGM & Conference took place this year on Thursday 30th September. We had a wonderful turnout as 171 attendees at the AGM & Conference Event on Zoom

For those of you who missed the event or would just like to refresh on the topics that were discussed, the presentations are available to download here.

We would especially like to thank Prof Orla Hardiman, Dr Ailin O’Dea, Dr Niall Pender, Ciara Fitzsimons Speech & Language Therapist, CRC & Lesley Doyle Speech & Language Therapist, Beaumont Hospital for all your contributions and making the event so interesting!

Prof Orla Hardiman Presentation

Dr Niall Pender Presentation

Dr Ailin O’Dea

Ciara Fitzsimons & Lesley Doyle Speech & Language Presentations

ALS/MND Patient Fellows Program

ALS/MND Patient Fellows Program

Bringing People with ALS/MND and Caregivers Into The Scientific Discourse

Have you ever wondered what the Patient Fellows Program for the International Symposium is all about? Are you interested in connecting with 1000+ researchers?

Please listen to the video below from past fellows, Philip Green and Gwen Peterson, to hear what the Patient Fellows Program is all about!

Once you have had a chance to watch the video, please encourage people living with ALS/MND to apply to be a Patient Fellow this year. This is a global program and we would encourage applicants from anywhere, however, the program is only offered in English.

To apply for this programme, visit here https://www.alspatientfellows.org/

Applications for 2021 are open as of 5th July

Deadline for applications is the end of the day on Friday, 20th August.

#ALSMNDSYMP #MND

The Impact of an IMNDA Wheelchair

IMNDA and Wheelchairs

Freedom and independence come in so many different forms
“It’s my best friend”
Manoeuvrability – “It turns on a sixpence”

(more…)

Coping with Stress as a Person with MND

“To say my world was turned upside-down that day in clinic is an understatement. I was expecting bad news, but the diagnosis came as a terrible shock. Some days, even now, I stop and ask myself has this actually happened,” ~ Person with MND

A diagnosis of motor neurone disease is life changing. For many people, it comes as a devastating blow, both to the person diagnosed and their loved ones. It’s normal to feel very distressed around the time of diagnosis. It brings shock and often profound sadness. For many, it comes at a time in life when they were preparing to enjoy retirement. For others, it arrives when they are in the middle of their working life and raising young families. Grief at the loss of the future you thought was ahead can hit like a tidal wave. (more…)

Living Well – HSE Support for Caregivers

Are you a caregiver?

Building Better Caregivers: classes are highly participatory, where mutual support and success build the participants’ confidence in their ability to manage their caregiving tasks and maintain a fulfilling life (more…)

New virtual supports available for MND during Covid

Back in March 2020, the Health Research Board (HRB) in cooperation with the Irish Research Council (IRC) launched the COVID-19 Rapid Response Call to fund research to provide evidence for the national and global efforts to deal with the virus outbreak. The funding process was a highly competitive one and several awards were received by Trinity investigators. (more…)