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Bereaved Children’s Awareness Week 2020

November 10th, 2020

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…)


35th Memorial Service

November 6th, 2020

On 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.

Our normal Memorial Service will unfortunately be unable to take place due to Covid-19 Level 5 restrictions; however, we are doing something special to mark and observe this significant occasion in the IMNDA calendar.

On Sunday 29th November at 12noon we are going to have a short online service where we will display all the names of those who have passed away this year. We will also remember all those who have passed away over the past 35 years that the IMNDA has been in operation.

Guests will have the opportunity to light candles to remember their loved one on the day. Music is performed by our very own Roy Taylor.

You can view the Memorial Service live from our Youtube Channel, on our Facebook page and here on our website.  We will also have a downloadable booklet of the service available on the day.

If you have any questions please email Maeve on info@imnda.ie 

We hope you will join us!


Light Up a Star

November 4th, 2020

Remembering our MND Community 

We miss our loved ones all year round but at Christmas, we miss them that little bit more so we have created a beautiful online memory tree where you can light up a star and remember someone special during the festive period. The light of a star continues to shine long after the star itself has gone.

It’s very easy to do, simply: Click Here, light up a star and dedicate it to your loved one. Your message and star will then shine brightly on the memory tree for all your friends and family to see.


IMNDA Christmas Shop is open!

October 30th, 2020

Charity Christmas stars on sale now for a limited time only!

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. Thank you for your understanding during these strange times.


Wintering Out COVID-19: Beating the Blues during the Months Ahead

October 28th, 2020

“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

  • HSE https://www2.hse.ie/wellbeing/mental-health/covid-19/minding-your-mental-health-during-the-coronavirus-outbreak.html Great mental health advice and links to lots of supports.
  • Aware offer online support groups, education/ skills programme and a resilience series with talks from celebrities about their journey with depression https://www.aware.ie/support/
  • Get Self Help: a useful mental health website (CBT) with free downloads / worksheets and for working on changing unhelpful thinking https://www.getselfhelp.co.uk/gallery.htm
  • Smiling Mind is a fully free meditation app.
  • Meditation apps such as Calm and Headspace can be really useful. They charge for a full service but offer some free material (the Breathe Bubble on Calm is a great support for mindful breathing! Go to “more”, “Breathing Exercises” and set your time). 
  • IMNDA Link up by phone or on the website with any queries around help or support you or your family may be able to access including counselling, MND Specialist Nursing support etc.

Resources for Caregivers


IMPACT ALS/MND Survey

October 21st, 2020

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!

(more…)

Research Mealtime Study

October 6th, 2020

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?

(more…)


Virtual AGM & Conference 2020

September 30th, 2020

IMNDA Virtual AGM & Conference 2020 – Wednesday 14 Oct

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…)


Volunteers urgently needed for MND Research

September 16th, 2020

The Academic Unit of Neurology of Trinity College Dublin need volunteers to take part in groundbreaking research of Motor Neurone Disease. This research, led by Prof. Orla Hardiman, aims to increase detection of the disease at early stages and improve the identification of new treatments.

To complete this research, we urgently need volunteers of any age above 18 years old, who do not have a blood relative with Motor Neurone Disease, to provide baseline measurements in a number of related research projects. (more…)


New MND Gene Trials taking place in Ireland

September 2nd, 2020

Trinity College researchers enable Ireland to compete on the world stage in breakthrough trial for MND

Researchers at Trinity College Dublin are to participate in an early phase gene-based clinical trial for motor neuron disease (MND). The research team represents one of only four centres in Europe to take part in such an exciting clinical trial for this devastating disease. The first Irish patient will enter the study today, (Tuesday, 1st September, 2020) at the Clinical Research Facility at St James’s Hospital Dublin. (more…)


A Long Shot

July 17th, 2020

ARE YOU READY FOR THE CHALLENGE?

After what feels like forever in lockdown, I’m sure like us you are thrilled that golf is back in play – albeit with a few extra rules and safety precautions as a result of Covid-19. It’s been a long and scary road, especially for vulnerable people living with Motor Neurone Disease, but seeing golf courses reopen all around the country has definitely lifted everyone’s spirits. It’s also given us a glimmer of hope that we are on par (no pun intended) to beat the virus and restore some normality at last.

And what could be better than a round of golf on a sunny day? Simple answer – three rounds of golf!

That’s what A Long Shot is all about.

It’s a golf marathon of types, designed to test your endurance and stamina as you complete three rounds of golf back to back in one day. That’s 54 holes of golf – which is no mean feat.

Do you think you have what it takes? You do! Well that’s just tee-rific! CLICK HERE and we’ll get you all signed up.


KBC Virtual Dublin Marathon 2020

July 14th, 2020

KBC Virtual Dublin Marathon will take place on the October bank holiday weekend, marking when thousands of runners traditionally hit the streets of Dublin. Despite the cancellation of this year’s marathon, the virtual race will ensure runners still have a goal to target.

(more…)


Walk Where You Can in memory of Eugene Loftus

July 2nd, 2020

Walk Where You Can…a virtual Walk from Ballina to the IMNDA Office in Dublin… 230kms in May in memory of Eugene Loftus by Marie Loftus.

On Dec 3rd 2014, my husband Euge was diagnosed with MND. He had noticed a slight change in the muscle between his thumb and forefinger on his right hand. His hand got stiff easily and did not have quite the same strength. Initially he thought it may be Carpal Tunnel syndrome. His diagnosis was quite mind-blowing for us as a family. Always active and healthy, this fact was incomprehensible but he was still well. I was hoping the “second opinion” with Prof. Orla Hardiman, recommended by the consultant in Galway, would change this and maybe find some minor issue instead. The appointment in March 2015 in Beaumont, at the multidisciplinary clinic with Prof Hardiman, confirmed the diagnosis. We met 2 research students that day who invited Euge to take part in their studies and he was involved in a number of research studies during the last 5 years.

A new reality lay in wait. How to tell people? Do we tell people? It was only really when I heard Euge say to his best friends “I have come to accept it” that I realised this was not going away.

As we absorbed this new reality we took a positive approach and decided to live life to the full and to do as much as we could for as long as possible. On Nov 6th 2015 Eugene was delighted to welcome Drama groups and a wonderful audience to enjoy the 1st One Act Drama Festival in Ballina Arts Centre. As Euge’s needs changed we told family and friends- all of whom became an amazing support team for us during this incredible journey. We eventually registered with The Irish Motor Neurone Disease Association (IMNDA) and it was then we discovered this wonderful Association which has its finger on the pulse and knows exactly what areas of support are needed to help those living with MND.

In June 2019 Tea for MND, which is an annual event all over Ireland, was held here in Euge’s garden and raised €8,680. A really wonderful day happened with the help of friends and family where folks came and spent a few hours chatting, having tea and cake and having a word with Euge who loved meeting people. From the huge response the Association get they are able to provide extra home help/care hours to those living with MND. This service was such a practical support as it meant I could leave Euge in capable caring hands, go and do shopping, get out for a walk, meet friends on certain days of the week.

Euge continued to enjoy visits from family and friends with deep discussions around GAA and his beloved Mayo football team, history, politics, nature, music…the list is endless.

In August 2019 his motorised wheelchair arrived giving him independence and access to the farm, the garden and to shopping trips and outings to the seaside and the town where he grew up. He would roll and I would stroll! Euge continued to find the positive on a daily basis and because of the support we got from family and friends and the IMNDA, he remained at home throughout.

An email came this April from IMNDA announcing Walk Where you Can as a fundraiser initiative, and I let this thought percolate for a few days wondering how was the best way to go about it. Then I thought “What if I walked to the IMNDA Office?” which Google informed me was 230kms from home to Merchants Quay in Dublin. Lockdown was in place with a 2km limit for exercise so this would be a virtual walk to Merchant’s Quay in Dublin. Decision made, at 4.30pm on May 1st, I set up the Just Giving page which links directly to the IMNDA account where online donations go directly.  I announced on my Facebook page my intention to walk 230kms (locally within the limits) during the month of May.

On May 1st at 6.30pm I decided to just to take the lid off the walk, so to speak, since it was so late. This first walk was along the perimeter of the field here where Euge left his mark on the land. The distance was 2.84kms …how was I going to do the next 227.16kms?

Hope starts with one step. Change happens with many.” This is a phrase used by IMNDA and it stuck with me…I wanted to give back to this wonderful organisation who had supported us through Euge’s journey with MND. This Association provided us with vital support and meant that he was at home throughout that time. This would have been very difficult without the help of the visiting specialist nurse, Eithne Cawley-an angel- who liaised with local services advised and encouraged us always. The IMNDA funded the equipment requested by the OT. I am so aware of the cost of the practical equipment that gave Euge comfort on his journey with MND-the chair lift for the stairs, the various mattresses that had to be installed when his comfort was paramount, the motorized wheelchair, the amplifier which aided his speech to be heard when there was a group visiting. They also gave support to me as Euge’s primary care giver.

I decided to document my daily walks in words with photos which I posted on my Facebook page. This also afforded me the opportunity to highlight the work done and the support given to us by IMNDA.  The weather was beautiful with blue skies and sunshine many of days in May. Ordinance Survey Maps which covered this area were my bible in planning each day’s walk and slowly as I highlighted the roads walked, and a spiderweb appeared of places I had been. What amazed me was the beauty I found on my own doorstep. Watching the flora and fauna, seeing the mountains in the distance and on certain walks getting a glimpse of the sea was a treasured delight. Each new route was an adventure. But the most amazing thing of all was watching the funds flow in. The JustGiving page sets an automatic goal of €250 and, I thought “sure every Euro helps.” By Day 9 the fund stood at €2,300 and I had walked 50kms! I woke, each morning, thinking about the walk planned for that day. The 5km limit was a joy for me as I discovered more routes locally and extended my daily kms some of which were loop walks and others were there and retrace walks.

After a week I found I could do 2 walks on some days to increase the daily kms as I knew my daily average needed to be at least 7.7kms. On Day 10 the weather changed again. The north wind came back and I needed to dress for winter walking complete with gloves!

On Day 16 I passed the 100kms mark. I celebrated with an espresso and a tasty snack from Boho Barista at the Quay.  I wondered if my runners (quite a few years old now) would bear me along for another 130kms. I am happy to report they did remarkably well.

By Day 18 I had passed the halfway mark. I had walked 118 kms and the fund was now at an amazing €3890. I was truly humbled by the generosity of those who donated. Each evening after I posted my daily report and photos, I received messages of support which motivated me to complete every step of the 230kms by May 31st.  I walked every day bar May 8th which was a rest day. The least I walked in any day was 2.84kms and the most was 14.33kms. I walked solo for the most part but as restrictions were relieved a little towards the end social distance walking was possible on quiet roads and a few friends on their turn walked with me. It was lovely to have the company, as up to that, I walked listening to the birdsong and sounds of nature, some podcasts or audio books.

I was reminded constantly of the challenge these unique times pose for those at home with MND or any illness for that matter. And also the challenge social distancing poses for those who provide extra medical care, physio, dietician, OT etc to patients at home.

We take our feet for granted and look at where they carry us every day. Only when a blister or some other irritation appears do we realise what comfort is.  My feet had to be well cared for during this time…Vaseline applied to the toes and heels helped avoid Blisters for the most part. One long walk on a hot day caused one blister near the end of May. My advice…Vaseline and change socks half way through a long walk and check there are no creases to cause irritation.

On Day 28 the fund crept over the €5000 mark! I was totally bowled over by the kindness of those who donated-friends and family and even folk I did not know personally but who had been affected by MND.

On my last day, Day 31, it felt a bit strange, waking, knowing my goal would be complete after today’s walk. But…I knew where I was walking and that it would end at the sea-my battery recharger. I had the company of a Lynn, a lovely lady along for this final walk. She cared for Euge and truly she was an angel to us both. She is unique and we were blessed the day she came into our lives.

I have to mention here the team in Beaumont…even though clinic day was a long one, we always left feeling uplifted, energised and positive after meeting all the staff there. Thank you.

This walk was both a challenge and a therapy in equal measure. It gave me thinking and feeling time.  Euge was amazing at noticing detail in the countryside and in nature so I saw with his eyes as I walked.  It made me realise how much I learned from him. Euge’s positive outlook on life and how he dealt with his MND journey inspired me daily. He was an amazing man who impacted all who met him. Eugene died peacefully at home on Dec 12th 2019. This walk was done in his memory and to raise vital funds for those living with MND.

My walk started with the idea of walking to the IMNDA office in Dublin to meet all those wonderfully, helpful friendly people who I spoke to by phone. Put the kettle on…I’ll get there one of these days!

So far €6,675 has been donated. My deepest gratitude to those who have supported us and made this happen.


VHI Virtual Women’s Mini Marathon

June 24th, 2020

The Vhi Virtual Women’s Mini Marathon is more than a 10k event, it’s a fun day out for everyone and it’s taking place from the 1st to the 10th October! REGISTRATION NOW OPEN!

This year, Covid 19 put the brakes on our plans. It was announced on 13th March 2020 that it was postponed and by 28 May we knew that a physical event would no longer be possible so plans were put in place for the first ever Vhi Virtual Women’s Mini Marathon. (more…)