“Taking care of yourself doesn’t mean me first, it means me too,” L.R. Knost
Staying well while supporting a loved one with MND takes real effort. Oftentimes caregivers’ own needs get put on hold because of the demands of the condition. The pandemic has also deprived families of key supports and social contact. As the COVID-19 crisis rumbles on, self-care has never been more important for caregivers. (more…)
The Irish Motor Neurone Disease Association will close up on Wednesday 23rd December at 1pm.
We will be back in action on Monday 4th January at 9am.
We would like to wish you a very merry, healthy and safe Christmas and thank you for your unwavering commitment and support to the Association during a year like no other.
Here’s to 2021 when we hope we will meet again in person!
What a year 2020 has been. Little did we know at the start of the year when the word Coronavirus first entered our lives, that we would be still facing so much uncertainty as we approached 2021. (more…)
Michael Clancy is one of our much loved IMNDA Ambassadors. Micheal is a Clare man living in Limerick. He has a little message to share with the MND Community over this festive period.
The year 2020 will go down in history. The year when the whole world slowed down. A time when people took a step back, relaxed and stayed at home, spent more time with family. People gave thanks and appreciated all that they had. Please God if I’m spared, this will be my 87th Christmas on this earth. These old eyes have seen it all, the good and the bad. I’m thankful that life has bestowed upon me a calm perspective. (more…)
Santa was snatched but with the culprit caught, he needs your help to get him from Kilmacanogue to Lapland! Will you run/ walk from December 1st to direct Santa on his way?
The Irish Motor Neurone Disease Association (IMNDA) is truly saddened to hear of the passing of Patrick Quinn. The IMNDA wish to offer it’s condolences to Pat’s family, friends and relatives. Pat was a true inspiration for the entire MND Community and our thoughts are with his loved ones at this very sad time. (more…)
Every November, the Irish Childhood Bereavement Network (ICBN) organises a series of events across Ireland to highlight bereaved children’s needs and provide a voice for them to be heard. (more…)
Today, Sunday 29th November we would like to invite everybody whose lives have been touched by Motor Neurone Disease to come together with family and friends and join us in remembering those we have sadly lost to MND.
During this short online memorial service we will display all the names of those who have passed away this year. We will also take a moment to remember all those who have passed away over the past 35 years that the IMNDA has been in operation.
During the video we will invite you to light a candle in memory of your loved one. We will display on screen the role of remembrance, which is a list of names of all those who we have sadly lost to MND since our last service.
We have a beautiful song performed by our own Roy Taylor along with some lovely readings. This virtual event can no way make up for the physical service we annually hold but hopefully next year we can all mark it together in person.
You view the Memorial Service Video below but also on our Youtube Channel and on our Facebook page . We also have a downloadable booklet of the service available below where we have displayed as many names as we could.
If you would like to get a copy of the service or need anything else please email Maeve on info@imnda.ie
Our Christmas cards have SOLD OUT! However you still have time to purchase one of our beautiful star decorations.
Our Irish made wooden star comes with a lovely ribbon to hang on your Christmas tree. This yuletide decoration also makes an ideal gift for family and friends.
Our special little wooden star costs just €10 each which includes postage, place your order Here.
Thank you so much for your support.
Please note due to our Fundraising Team mostly working from home, orders won’t be sent out on a daily basis. We will do our best to get them to you as speedily as we can but some delays are likely. Please also take into consideration that An Post are experiencing heavy delays during the festive period.
Thank you for your understanding during these strange times.
“What is the bravest thing you’ve ever said?” asked the boy.
“Help”, said the horse.
From The Boy, the Mole, the Fox and the Horse by Charlie Mackesy
We are living through very challenging times. The COVID-19 crisis is continuing for much longer than we had hoped or expected and is having a huge impact on all our lives. We are facing colder weather and shorter days, with ongoing uncertainty surrounding the pandemic. For families and individuals living with MND, the challenge presented by the condition may well be an added stress at this time. The need to take positive steps to protect our mental and physical wellbeing during the months ahead has rarely been more urgent.
I was prompted to think about these issues when I really felt this COVID winter start to bite a few weeks ago. It was the Sunday night when a Level 5 lockdown looked imminent. It put me on a train of unhelpful thinking that I found hard to shake. I quickly realised this could be a very long winter if I didn’t get off that train. I decided to revisit some good sources of information around positive mental health which I’ll summarise in this piece. They are simple, evidence-based tips but are not a replacement for talking to your GP or a trusted health professional if you are really struggling or feel you may be clinically depressed.
It’s important to say, first and foremost, that there’s no quick fix for stress and particularly for depression. Anyone that tells you otherwise, is selling you short. Recovery usually involves several elements and often means doing things (such as exercise) that you don’t feel like doing when you’re down. So in that sense, rule number one is that often when you’re feeling down, you need to do what you don’t feel like doing. With exercise, for example, when you’re feeling down bear in mind you usually have to start moving long before you feel like it’s helpful or enjoyable. A summary of some simple actions that can support you in times of stress and low mood are outlined in the table below.
Sleep | Evidence suggests that many of us do not get enough sleep. We need on average 8 hours. Keeping to a regular routine of bedtime and rising time can help. Avoid alcohol and caffeine, especially in the evening. Wind down for an hour before bed and avoid bright screens/ lights. Keep TVs and phones out of sleep spaces. A cooler room temperature can also help you stay asleep through the night. |
Connect | Depression sometimes tricks the mind into thinking we’re ill and should avoid others. Take time to connect safely with people you care about. Avoid people you find difficult if you’re feeling down. Reach out to share with someone you know will respond with kindness. |
Exercise | About half an hour of exercise three times a week is ideal to boost mood. Talk to your physio about alternatives if you are a wheelchair user. Exercising outdoors and getting light exposure early in the day (15-30 mins) is especially helpful if you notice your mood is sensitive to seasonal changes and takes a hit in winter. |
Kind Mind | Overthinking revs up the stress response. When we’re feeling down, the mind goes into an unhelpful thinking pattern called rumination. It’s “dog chasing its tail” thinking. It might be the habit of a lifetime, but it’s worth stopping and noticing your automatic thinking patterns; catching and redirecting unhelpful thinking will pay dividends (see CBT link below).
Unstitching well-worn thinking patterns not an easy thing to do however, and you may well need the support of a good counsellor or therapist. Find someone registered and fully qualified. Try another therapist if the first one you meet is not a good fit for you. |
Notice & Create | Keeping a gratitude journal has been shown to nurture a happier mindset. Stop and notice things you grateful for; it could be as simple as clean water, or the love of a pet or family member.
Evidence suggests that creative activity supports wellbeing in lots of ways. Writing, baking, music, knitting. Start a project, however small. You don’t need to be any good at it, you just need to enjoy it. |
Allow | If you are a person living with MND or are supporting a family member with MND it’s natural to feel all sorts of difficult feelings; loss, frustration, fear, exhaustion … you are having to adjust to an ever-changing condition and with all the added stress of COVID; allow that you might have a down day or even moments of overwhelming distress.
Try meeting yourself at your own door with compassion, saying “This is a moment of suffering. How can I take care of myself in this moment?” |
Tech Break | It’s important to stay up to date but it’s equally important to limit exposure to news and situations over which we have limited control (such as the pandemic).
Also, a word of caution on social media; the evidence suggests that it often triggers us to make negative comparisons between ourselves and others. Consider a break from social media if you’re feeling down. |
These tips may be useful wellbeing reminders, whether or not you’re feeling low. I want to acknowledge that for each person and family, the impact of living with MND is different. For some, distress is not an issue. For others, feelings of loss, anxiety and even despair are normal and understandable responses to all that MND can bring. I would once again encourage you to talk to your GP or health care professional you trust about getting the right kind of help if you are feeling low, anxious or overwhelmed a lot of the time. The IMNDA are also happy to link you up with a qualified counsellor for a number of sessions, which can be arranged online or over the phone at the moment.
Finally, for family and caregivers of people with MND, I want to draw your attention to groups I am running with colleagues as part of a study. The study is looking at online groups and how they can support caregivers. The groups are structured programmes, one session a week for six to eight weeks, and there are still some places available for the next round. If you are interested and would like to hear more, I have included my contact details below and those of my colleague Caroline Wheeler.
Dr. Ailín O’Dea is a Clinical Psychologist working in Beaumont Hospital as part of Prof. Orla Hardiman’s team. Ailín is involved in a study that looks at the impact of online groups for families and caregivers of people with MND. The groups are structured and run once a week over six to eight weeks. They offer a chance to meet others in a similar position and learn new skills. If you are interested in this study and would like to take part in a group, please get in touch with Caroline Wheeler (089) 480 4173 wheeleca@tcd.ie or Ailín O’Dea aiodea@tcd.ie
Places still available on upcoming group.
Resources and Supports for All
Resources for Caregivers
Here are some details of a very exciting and worthwhile survey for all people living with ALS/MND and their caregivers. People from all across Europe are taking part to give their opinions to help guide drug development and services for ALS/MND. Be a part of it – and let’s make change happen together!
Are you the family carer of a person who has been diagnosed with MND?
Do you provide any assistance to a loved one to help them eat and drink?
Are you interested in taking part in a study exploring your experience of mealtime with your
family member who has MND?
We are really looking forward to welcoming you to our Virtual AGM & Conference. Despite the format change, you will be treated to a host of fantastic speakers.
Please read on for some notes on the event. You will also find log in details below. (more…)
