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, 1^st September, 2020) at the Clinical Research Facility at St James’s Hospital Dublin. (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 3^rd 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 1^st, 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 1^st 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 31^st.  I walked every day bar May 8^th 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 12^th 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.

A daughter caring for her beloved mother: MND, becoming a carer and saying goodbye

June 12th, 2020

‘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 2^nd or 3^rd 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.

Care for Caregivers: online study for families and friends of people living with MND

June 9th, 2020

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 Virtual Tea for MND

May 29th, 2020

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 21^st 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 21^st – 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

May 26th, 2020

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.

https://www.audible.co.uk/

 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.

https://librivox.org/

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