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!
Research Mealtime Study
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?
Virtual AGM & Conference 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
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
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…)
KBC Virtual Dublin Marathon 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.
Walk Where You Can in memory of Eugene Loftus
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.
Coping during COVID 19: Support for People Living with MND and their Families
Coping during COVID 19
Support for People Living with MND and their Families
We are living through extraordinary times. The last few months have brought huge change and pressure to adapt in everyone’s lives. For people living with MND and their families, these changes come on top of dealing with the moving target that is the illness. This piece talks about some of the added stress that COVID 19 has brought. There are no quick fixes to these challenges, but I explore some simple things that have been shown to support wellbeing and coping in times of difficulty. I also list some resources that you may want to access, now or in the future.
The first and perhaps most obvious thing to state is that it’s okay to feel stressed right now. You and your family are already coping with the changes that MND has brought into your lives. It’s normal to feel overwhelmed and distressed at times. On top of this pressure, the COVID 19 pandemic has added pressures such as:
- Fear of contracting the virus
- Worry about decline in health and wellbeing of the person with MND during lockdown
- Loss of key supports such as home care, because of fear of contracting the virus
- Loneliness; missing physical contact with family
For many people, these pressures feel manageable. Chances are, however, that the pandemic has added stress in some way for you or your family. There is no magic wand that can transform stress. Individuals and families living with MND know this better than most.
There are some simple things, however, that can support people through difficult times. These are things we often forget to do when we’re stressed. I like to think about these supports as putting legs under a table; the more you add the better supported you’re likely to feel.
| The 5 C’s of Self-Care During Covid 19 | |
| 1. COMPASSION | It’s okay not to feel okay, especially with all the uncertainty at the moment. Be gentle with yourself. You’re always doing your best, even if it doesn’t always feel good enough. |
| 2. CALM | Stop and breathe. Count to 5 on the in-breath, 5 on the outbreath; it slows the stress cycle and helps you think clearly. Try a mindfulness app. Exercise; even a ten-minute walk or a seated routine helps support body and mind. |
| 3. CONNECT | Stay in touch with loved ones in whatever way you can. Connect with what matters to you. For caregivers, remember it’s ok to look for help, now more than ever. |
| 4. CONTROL THE CONTROLLABLE | Set a small, manageable goal each day. Something simple that helps to sustain your spirit. Praise yourself for achieving your goal. |
| 5. CONFIDENCE/ HOPE | Remember, this too will pass. Try keeping a gratitude journal; one small thing you enjoyed each day. With practice, it can actually help nurture a happier mindset. |
(Adapted from Stress First Aid model developed by Patricia J. Watson and colleagues.)
While this has been a time of huge loss and challenge, there have been some opportunities, some silver lining. This was captured in Róisín Duffy’s comments on the IMNDA website;
“Many are scared, very scared and rightly so, but many have told us that they are using this time to appreciate their loves ones, appreciate nature and be grateful for everything that they still have in their lives.” (Róisín Duffy, CEO of IMNDA)
I sometimes think of Jon Kabat’s Zinn’s comment; “You only have moments to live.” It’s a reminder to us to try to live in the present moment as much as we can; savouring the taste of our food, the sound of birdsong, or the company of a loved one. The experience of living through a pandemic, as well as dealing with MND, makes the goal of living in the moment ever more challenging, but perhaps ever more urgent.
Online Group Support
Dr. Ailín O’Dea is a Clinical Psychologist working in Beaumont Hospital as part of Prof. Orla Hardiman’s team. Along with her colleague Caroline Wheeler, 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 over six to eight weeks. They offer a chance to meet others in a similar position and learn new skills.
These online groups first started in early July with participants from all over the country. There have 
been wonderful moments of sharing and support between group participants, despite the very challenging nature of their situation for many caregivers. The challenge has been exacerbated by the pandemic.
They are currently recruiting for the next round of groups, that will be starting in October 2020*. If you, or anyone you know, may be interested in attending these online groups, please check out the link below or contact Caroline on email wheeleca@tcd.ie or phone number 089 480 4173 (Mon – Fri, 9am-5pm).
LINK: ONLINE GROUPS FOR FAMILY AND FRIENDS OF PEOPLE WITH MND.
Other Resources and Supports
- 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.
- 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
- https://www.hse.ie/eng/services/list/3/carerssupport/caringforyourself/caringforyourself.html Lots of sound advice for caregivers about self-care available on the HSE website.
- https://familycarers.ie/carers-coffee-club/ These sessions are recorded with experienced professionals who speak to different topics; a good one to start is with Bryan Nolan, a grief and loss specialist who talks about compassionate self-care for carers. There’s lots of other useful information available on this website.
- National Freephone Careline 1800 24 07 24 (run by Family Carers Ireland). They can connect you with trained counsellors online or over the phone.
Tribute to Padge Kelly
By Andy McGovern
I’ve been thinking. Maybe this self-isolation and the threat of coronavirus can actually be of some benefit. As a long-time survivor of Motor Neuron Disease. I have been isolated now for more than a month. But I’m not in the least bit worried or bored with that. I live in a countryside in County Leitrim. Some would refer to this as being isolated at all times. But now it has come into its being. In fact, it might be the envy of some city dwellers. As I sit outside my comfortable home, I feel anchored to nature. The birds singing all around me. Little lambs playing in the fields beside me, cattle lowing in the distance. And the cuckoo has arrived. This is heaven, my heaven. If only this Motor Neuron Disease would go away forever.
I’ve been a member of the Irish Motor Neuron Disease Association, since it’s foundation in 1983. I have attended most of their AGM’s. I have met hundreds of people with this disease. We have shared our stories together and over the years I have lost hundreds of fellow patients to this terminal disease. I have made friends with many of them, but with the passing of time, I have lost most of them, and they are now just like passing ships in the night.
As I sat in my kitchen last night. I treated myself to a nice Nightcap drink before I went to bed. Something I do most nights. This makes me much at ease and very comfortable and I get lost in a sea of tranquillity. I started to think of people that I have met with this disease over the past 42 years that I have got it. These were lovely memories ignited by the nightcap! The kitchen was quiet. The TV turned off and I felt that this was a moment to treasure, not a pain or ache just floating on the clouds.
And as I dwelt on those numerous people that I had met with MND, one image of a young man kept coming back time and time again. It was Padge Kelly. He was the youngest person in Ireland to be diagnosed with MND in 2004 at the age of 16 years. He was about 18 years old when I first met him at one of our AGMs. We hadn’t much conversation or connection. Padge seem to be always happy and smiling and enjoying life. He had always a young group of his own age friends with him. And they would have him out on the dancefloor in the wheelchair. So why should I interrupt? There was an age gap between us of 55 years. The only thing that we had in common was MND. And I had a grandson his age. I did get talking to his mum and dad. Pat & Joan. I felt very sad for Padge, but no way was I going to approach him. Sorrow and pity are two great imposters that no one with MND wants to hear from so-called sympathisers.
I met Padge on many occasions and we exchange smiles. That was the one thing about him that I will never forget: “his smile”. Padge’s condition deteriorated fairly fast. He lost his speech but he never lost his following of young friends. There was always a crowd with him. He had a great interest in sports of all kind and indeed he met with some great sports personalities. Including Roy Keane. He done many fundraising events and highlighted the awareness of Motor Neuron Disease all over the world.
Many years previously, to keep myself occupied with this devastating disease, I started to write my biography. It consisted from the day I was born to my 80th birthday. I struggled with the foot control mouse pedal and voice recognition technology. And finally, I had my book ready for publication on my 80th birthday. The book known as: “Against the Odds, Living with Motor Neuron Disease”. I had a successful launch in Leitrim. And I was invited to do another one in Dublin in the Lighthouse Cinema Smithfield market. I also done an interview earlier that day with Matt Cooper for rte. There was an enormous crowd at the launch. They came from the Irish motor neurone disease Association. The Caring and Sharing Association. Some of my family, including, my son, daughter, daughter-in-law, my grandson and brother Jack. My friends from Leitrim that was now living in Dublin. The great memory man himself. Jimmy Magee performed the launch. His son Paul was another victim of this cruel disease.
Was it any wonder as the night went on, I felt that I was on a high? The drinks were flowing and finger food was going. Everyone was congratulating me and singing my praise. It felt like everyone wanted a piece of me? Then I felt a tug on my arm. I turned around and it was Joan Kelly. (Padge’s Mum) She said: “Andy will you come down here and meet Padge. He wants to say hello to you.”. I went down a few steps where Paul was. He was lying on a wheelie bed. He looked at me with his smiling, gleaming, dancing, eyes. I said: “ Padge. Thank you for coming.” That’s all I could say as I fought back the tears. I lifted my useless hand and arm and left it down on his chest. For a few moments We looked at one another through tearful eyes. Padge had lost his speech through MND. I had lost mine that very moment and could not say a word. I walked back to the celebrating crowd, fighting back my tears. I was no longer the hero of the night. That young man lying on the wheelie bed that had come all the way to support me. He was my hero. I kept smiling with my friends, but it was a false smile. I never felt as low in all my life.
I stirred in my comfortable armchair. That distant memory, crystal-clear in my mind as if it was yesterday. The name I had choosing from my book against the odds – powerful words which reflect Padge’s story, every bit as much as mine and many more others with MND. We are all in this together. I left my kitchen and as I made my way to take my rest. I thank God for all that I have. I vowed to continue as long as I have a voice, to speak out for my fellow warriors. As the experts of the world strive to find a cure for corona virus. I pray that our day will also come when we can live in a world free of MND. In the meantime, I will remember Padge with his laughing eyes, his beautiful smile, filled with courage, which continues to inspire others. Padge you are a star.! Sometimes we don’t see the stars, but we know they are there. You are my hero who fought this devastating disease for 15 years and kept smiling.
Padge died on 30 May 2019, at the young age of 31 years. May he rest in peace.
3 September 2012; In attendance at the 2012 Croke Park Abseil Launch with Irish Motor Neurone Disease Association was Republic of Ireland International defender Stephen Kelly and 25 year old Motor Neurone Disease sufferer Patrick Kelly from Dublin. 2012 Croke Park Abseil Launch with Irish Motor Neurone Disease Association, Croke Park, Dublin. Picture credit: Paul Mohan / SPORTSFILE *** NO REPRODUCTION FEE ***
A daughter caring for her beloved mother: MND, becoming a carer and saying goodbye
‘I realised my relationship with my wonderful mother had changed. I was no longer just her daughter I was also her carer.’
‘I am happy I was able to care for her and hope it alleviated some of her suffering when she was faced with such adversity. The comfort of her holding my hand was still such a solace even as an adult.’
Fiona Hyland (30) cared for her Mother Rita while she was living with MND. Rita died last year. Fiona shares with us the myriad of emotions dealing with a MND diagnosis, becoming a carer and saying goodbye.
That Thursday afternoon, as we sat in the outpatient clinic in Beaumont, was the first time I had considered myself as a carer. It was in that consultation as we discussed carer burden that I realised my relationship with my wonderful mother had changed. I was no longer just her daughter I was also her carer and was already well on the physical and emotional rollercoaster that this brings.
Caring for someone with a condition like motor neurone disease (MND) involves many physical challenges not just to the patient but also to the carer. Transfers, positioning, re-positioning all become part of daily life. Each process is time consuming and I found them physically very tough. Feeding, dressing and washing someone else also takes its toll on the carers physical health.
Then, there all the many emotions to be dealt with
- Guilt– that overall I wasn’t doing enough to care for the most precious person in my life, that some aspects of her care were being neglected. When I left her to go to work or even just shopping I felt like I was abandoning her. At work I felt guilty that I was no longer working full time and not doing my job to the full of my ability. “Sorry I can’t go” seemed to be the only response to friends which again left me feeling guilty. I felt I was no longer offering support or remembering events in my friends lives another source of guilt.
- Loneliness and isolation– Being sole carer to someone is challenging and I felt that no one knew the reality of our situation. Loneliness always seemed much worse at 5am after my 2nd or 3rd time that night attending to her needs as I would clamber back up the stairs or on the nights I slept on the floor beside her as I tried to ignore the various noises in the room- from her bed, NIPPY machine, the clock that were all amplified in the dark of night. It appeared that my peers were enjoying life- travelling, settling down and living a ‘normal life’, meanwhile, I was watching my only living parent deteriorate in front of me. My life was passing by. Of course everyone has their own difficulties and nobody has a perfect life-this reality does nothing to minimise the loneliness and isolation felt. This was certainly not where I had seen my life at 30years of age.
- Stress and time pressure– the to do list never seems to get any shorter- laundry, cooking, shopping, appointments, administrative duties all take time and all need to be completed. A lot of these needed to be tended to while carers/ home helps have relieved you from the house. This time pressure is another stress- why are the traffic lights always red and the queue in the supermarket extra long when you only have fifteen minutes to get home as the home helps will be leaving.
- Exhaustion– caring for someone 24hrs/ day is both physically and mentally tiring. Tiredness makes everybody cranky which increases stress between the carer and person being cared for.
- Anger– that someone as strong as my mum was losing her independence and ability to care for herself to this horrible disease. Each time I noticed a deterioration I was angry with MND as I Knew this was a signal that she was getting closer to the end of her life. Anger also came to the fore when carers failed to show up, and when the carers or the health system caused my mum extra stress.
- Fear– of the future and the unknown. Fear and Concern about how we would cope with the next deterioration was constantly present. Fear of how she would manage if a carer failed to turn up at their allocated time and I wasn’t home. Fear of what would happen if an unexpected event occurred and I was unable to care for my mother. Fear of how I was going to survive with the eventual loss of my mum.
- Joy and appreciation– joy and pleasure from simple everyday activities like sitting in a coffee shop enjoying coffee and cake. Laughter and joy that we shared with many of her friends, family and carers. Appreciation for the many healthcare professionals, friends, family and support staff that came into our lives as she journeyed through the stages of MND
- Grief-even while she was still alive I was grieving- the loss of the future I thought we would have together. I was grieving for the independent, strong, powerful, women whom I had once considered invincible,
Even with all the challenges caring for her was an absolute privilege. The time we spent together and memories we made is something I will always cherish. I am happy I was able to care for her and hope it alleviated some of her suffering when she was faced with such adversity. The comfort of her holding my hand was still such a solace even as an adult. While there were tears of sorrow throughout her illness we also shared many tears of laughter. It was a steep learning curve for both of us- she had to learn patience, to trust other people being in control and how to drive an electric wheelchair while I had to learn how to dye hair and how to move swiftly out of the way of mentioned chair but also to acknowledge and understand how extremely difficult it was for her to rely on someone for every physical requirement. Even though physically she was severely disabled she was still able to listen to my rants and problems and offer her words of wisdom and most importantly comfort and support. She was also still able to complain when I did something not to her liking but as we used to joke you just can’t get the staff these days and I couldn’t be fired!!!
The emotional rollercoaster is normal when it comes to the life of a carer. I found it difficult to express the negative emotions. I didn’t want to appear like I was complaining excessively or like I wasn’t coping. I was coping but it is an extremely challenging situation. You may feel like screaming back “who is going to do everything” when the 100 person says “ it is important you look after yourself”. It is vital though you look after yourself. You can’t care for someone else if you are burnt out and exhausted. It is not a choice most people make to be a family carer but a situation most people find themselves in. It is important to remember that you are doing your best and managing this situation to the best of your ability in the circumstances.
Then comes the inevitable death and with it grief. Death a short word that changes your world completely, whips the table cloth from under your feet and leaves you trudging through quick sand gasping for breath.
Once again there are so many emotions to deal with
- Loss– not just the loss of the person you loved so dearly in the world and the massive void left in your life but the loss of your beliefs in the world. You lose your self- confidence and you question your judgement. Doubt becomes a major part of your world. You lose the ability to make a decision or to plan- even deciding what to eat or to wear seems a huge challenge. There are no certainties only uncertainties. You lose the future you had expected to have. Some of your support network disappears, friendships are lost- people don’t know how to behave, how to respond to someone grieving. You are expected to be “over it” within a few months when in reality it takes many many months and you never do just get over it.
- Annoyance and anger at people who complain about insignificant issues, or portray family and friends as being a nuisance or inconvenience. Anger that people don’t understand, don’t offer support that you feel they should and need.
- Jealousy– of people who have never grieved someone close. Jealous of those who have never stood by a loved ones grave and wept or those who have never sobbed themselves to sleep after a death.
- Guilt– that the person who has died is gone and you are still existing. When friends and family have a joyous event you feel guilty you aren’t able to show them the delight they deserve. Truthfully you are happy for them but you are also just surviving yourself and don’t have the reserve to be as supportive as you would like to be. Everything in the months after the death is about self preservation.
Grief is also an experience of contradictions
- Exhaustion – an indescribable fatigue both physical and mental. Yet trying to sleep becomes impossible as thoughts and memories race through your mind
- Numbness– feeling anything is difficult. However, everything hurts so so sharply – Like a piece of your heart has been ripped out and a bitterly breeze just howls right through you. You develop an over sensitivity to comments or messages from those around you.
- Need to return to normality. There is a desire to return to normal, to feel normal again. By returning to normal though are you negating the loss of this person in the world? Also what is a normal world, with the person you loved so much no longer present? How can your life exist ?
- Restlessness and loneliness– you want to be at home where you feel safe and protected but home has too many memories which are sometimes just overwhelming. You want to be around people but when you are surrounded by people you feel extremely lonely and isolated. In short, you are uncomfortable wherever you are and uncertain about what you actually want.
- Desire to talk and remember the person who has died. It is a comfort to tell stories and remember the deceased person but other times it is just too painful. There is no indicator as to how you will respond when someone mentions them which is also a stress.
Then there are the physical effects- chest pain, shortness of breath, palpitations, decreased appetite, fatigue, memory loss, poor concentration, the tears that just roll uncontrollably down your cheeks. These do all ease – eventually.
On top of dealing with grief, the grief administration still has to be completed- registering the death, cancelling phone accounts, changing names on bills. This is an extremely stressful part of dealing with a death. You do just want to yell down the phone ‘ you can’t talk to the account holder they are dead’!!
The world is cold and grey. Everything hurts. That’s the reality of grief, for a while, eventually it becomes more colourful again.
I do not believe in the seven stages of grief. It is a heartbreak you learn to live within a new normal world that hits like waves on a beach as it ebbs and flows and at other times hits like a tsunami. It does get easier and one day you will feel the true warmth and comfort of the sun on your face and the ground under your feet will once again feel solid- until that day you put on an extra warm coat and walk a little slower as you cherish the memories.
Cycle 50km every day for 20 days!
Alan Quirke’s father David sadly passed away from Motor Neurone Disease in May; 8 months after his diagnosis.
Alan has decided to take on an incredible challenge to raise funds for the IMNDA and he would love for you to either support or join him!
“The plan for the fundraiser is to cycle 1000km completing 50km every day for 20 days in a row starting on July 12th right up to July 31st. I’d love it if people around the country would also take on this challenge and do the 50km cycles in their own localities. If you can’t commit to the full 20 days try to do 1, 2 or as many 50km cycles as you can commit to between July 12th and 31st to support the IMNDA. Thanks for your support and if anyone wants to call me to join this worthy cause please contact me through my GoFundMe page“.
We wish you the very best of luck Alan!!
Care for Caregivers: online study for families and friends of people living with MND
For many people living with MND, family and friends play a huge role. Supporting a loved one living with MND can be a very rewarding experience. Caregiving can also bring challenges. These include coping with the diagnosis of MND and the feelings it may bring up, such as sadness and worry about the future. Other challenges include dealing with changes in family life due to the condition.
For several years, the MND team at Beaumont Hospital, together with the Academic Unit of Neurology at Trinity College, have been looking at caregivers’ and families’ experience of supporting a loved one with MND. We have come to an understanding of the rewards and challenges involved in caregiving.
We have developed a study that aims to help families, caregivers and friends of people with MND through taking part in structured groups. The groups involve a weekly online meeting over six to eight weeks. They offer a chance to meet other caregivers in a similar position. The groups also offer a chance to learn new skills such as how to cope with difficult feelings, as well as tips for self-care. The study is being conducted by Professor Niall Pender, Principal Clinical Neuropsychologist, and Professor Orla Hardiman, Consultant Neurologist, and their teams.
If you are interested in this study and would like to take part in a group, please get in touch with Caroline Wheeler;
Mobile: 089 480 4173 Email: wheeleca@tcd.ie
Closing date for current round of applications; June 26th, 2020.
We hope to run additional groups after this date. Enquiries welcome at any time.
Drink Tea for MND!
DRINK TEA FOR MND HAS GONE ONLINE FOR 2020. PLEASE CLICK HERE TO SET UP YOUR VIRTUAL TEA PAGE OR DONATE TO THE CAMPAIGN.
Drink Virtual Tea for MND
Drink Virtual Tea for MND: Will you join us?
There is no doubt that the global pandemic has changed our everyday lives. This year’s Drink Tea for MND is a very different but very exciting one. Although we are under the cloud of Covid- 19, we must adapt to these uncertain times. A recent survey by the Charities Regulator, showed that more than half of the 2,223 charities that responded say their finances were uncertain or in difficulty as a result of Covid-19. The IMNDA is no different with an expected 60% drop in fundraised income by year end.
As the only organisation in Ireland providing care and support to families affected by MND this will have a devastating impact. Today, there are more than 400 people living with this complex and cruel disease and they need our support and your support like never before.
June is such an important month for our MND community. It is a month of global awareness, with June 21st being Global MND Awareness Day.
With so many of us working and staying at home, our kettles have been in full demand. One thing certainly hasn’t changed during this time and that’s enjoying a well-deserved cup of tea. Despite social distancing, we can still be together.
Whether it be a cup of tea during your zoom chat, a hot cuppa in the back garden with friends (all while social distancing of course) or a keep cup in the park, we would love you to join us for Drink Virtual Tea for MND.
To help support the MND community and spread MND Awareness this month we want you to support us on June 21st – or a date close to it – by hosting a Drink Virtual Tea for MND event. It can be as elaborate or as simple as asking friends, family or work colleagues to support you by ‘purchasing’ tea, coffee or some delicious goodies from your Virtual Café Menu!
So, why not pull up a seat at our virtual table? We would love you to join in. All you need to do is sign up right here.
Roisin Duffy, IMNDA CEO
Audiobooks
Audiobooks are voice recordings of a book. They can be word-for-word readings of the text or shortened versions.
Audiobooks have surged in popularity in recent years. They allow people to enjoy books whilst completing other tasks. They are an excellent choice for anyone that finds holding a book or reading text difficult.
Books on CD
Audiobooks on compact disc (CD) are available to buy from bookshops or online retailers.
Using CDs requires a CD player to use them and they can be bulky as they involve many discs. They are expensive compared to Digital Audiobooks. But they are available for free from your local library. They are best suited to people with limited access to other audiobook technology.
Digital Audiobooks
Audiobooks are available online as digital files. You download these to your computer or audio device to play them.
They generally download as MP3 files (a widely-supported format). This means you can copy and play them on a wide variety of devices and without a specific app.
Digital audiobooks are usually cheaper than CDs. They are less fuss, as you don’t have to deal with changing discs, and can use on a device you are comfortable with.
Online Subscription Services
Online audiobook subscription services are a popular way to listen to audiobooks. You pay a monthly fee which allows you to buy a certain number of audiobooks per month (usually one or two).
To access these services you need a device that can download the services app or access to their website. This requires familiarity with the technology. It is best suited to people who already use and enjoy audiobooks.
Streaming and Downloading
Streaming an audiobook means to download as you listen. This is a good option if you want to start an audiobook straight away. You’ll need a device that can connect to the internet and access to a streaming service.
Many streaming services allow you to download to your device for offline listening. This allows you to listen to your books after your access to an internet connection has ended.
Streaming services can be paid or free. Audiobook files can be quite large. If you are doing this on-the-go you’ll need a strong connection. Be warned it can use a lot of mobile data!
It’s best to download while connected to WiFi. This is a good option to try audiobooks without the commitment of a paid service or the limitations of CDs.
Recommended Services
Public Libraries
Your local library will stock a range of audiobooks on CD which you can borrow for free. The library can also request titles they don’t have on the shelf.
https://www.librariesireland.ie/find-your-local-library
As a library member, you also get free access to BorrowBox. This app allows you to borrow and listen to audiobooks on your phone or tablet – anytime, anywhere. You can borrow up to 5 audiobooks at a time, for a loan period of 3 weeks.
https://www.librariesireland.ie/elibrary/eaudiobooks
Audible
The world’s leading audiobook retailer, Audible is a subscription-based service. Monthly fees start at £7.99 GBP. This allows you to buy 1 audiobook per month from their extensive range of 200,000+ titles. You can cancel your subscription anytime and keep any audiobooks you’ve purchased. They have apps for almost every device, including Apple, Android, and Windows.
LibriVox
LibriVox is an online catalogue of free audiobooks. These books are read by volunteers. The copyright has expired on these works, so, for the most part, they are recordings of classics.
Google Play Books
Google Play Books offers a good range of titles at attractive prices. You buy titles and listen through the Google Play Books app or website. You can also move audiobooks to other devices to listen how you want.
https://play.google.com/store/books/category/audiobooks
The Book Depository
The Book Depository offers a huge range of audiobooks at great discounts with free delivery.
https://www.bookdepository.com/category/3389/Audio-Books
Which to Choose?
The best way to listen to audiobooks for you depends on your needs.
Do you listen to audiobooks regularly or only now-and-again?
Do you have a smartphone or tablet to use audiobook apps, or will you need them on CD? How much do you want to spend on audiobooks, or do you prefer free options?
Your public library is a great way to see if audiobooks are for you. Borrow an audiobook from your library or use the BorrowBox app to test them out. All you have to do is be a member to access these services for free. Your library team will help you get set up.
If range and instant access are important, and you can afford it, then Audible is the way to go. They have an excellent selection, easy-to-use apps, and a ‘cancel anytime’ option.
Audiobooks are a great way to enjoy books for all readers.
Information has been supplied by booksonline.ie
