News Archives - IMNDA | Irish Motor Neurone Disease Association

MND, SELF-ISOLATION AND ME (Valerie O’Carroll)

Valerie O’Carroll is from Dublin and living with MND. Valerie was the face of our Sponsored Silence this year and what an impact she made. Her colleagues in Ballymun Child & Family Resource Centre all got behind the campaign and we are incredibly grateful. They are all like a big huge family. Valerie is now working from home, so we asked her how she is getting on during this period of self isolation…

 

 

Well this is day 22 in my isolation; to say it’s been difficult is an understatement! A least I’m working from home which is definitely helping my headspace.

I work in the community and voluntary sector so we are still looking after vulnerable clients who are helping me to focus on other things and other people.

So, what do I do to fill in the time when I’m not working….

Siel Bleu is a fantastic group who provide activities for those who can’t move that well, they do chair exercises for people who don’t have a lot of mobility. http://www.sielbleu.ie/ they are providing free classes on Facebook at 11am and 2pm every day.  Every day I’m sitting in front of my iPad waiting on this class to start. That keeps me busy for about 30 minutes.

Siel Bleu Ireland is the first specific effort to promote exercise among older adults and patient groups in Ireland, with the aim of improving overall wellbeing. They design programmes with a preventive approach that benefits all adults, at any age, and at any stage of their lives.

Boredom

This is a big issue, eating because of boredom, it is terrible I reckon I’ll be at least 2 stone heavier when this is over, but I’ll tackle that when it is all over.

I‘m really trying to distract myself from this, but it is very hard at times, so most of the time I just give in and eat.

Board games are good. We have found some that were in the attic when our kids were small they are great, really fun and before you know it 2 hours have gone by!

The other thing I find really good is keeping in touch with friends and also connecting with people you haven’t seen in years is Facebook and Twitter. I would have always given out about these before but now I find them a real life saver at times (but not all the time).

FaceTime

This is something I love doing because I get to see my 5 grandchildren, which always makes my day. I can also talk to my work colleagues and friends.

Community Response Forums- Covid-19

 

There is now a Local Authority Community Response Forum in every local authority area to help all vulnerable members of our communities affected by COVID-19 restrictions.

Each forum will consist of the HSE, the council, county champions, An Post, Community Welfare Service, An Garda Síochána, other State organisations, charities and other stakeholders.

Each forum will provide the following services:

  • Collection and delivery of food, essential household items, fuel, medication in line with guidance
  • Transport to community testing centres, clinical Assessment Hubs, GP and hospital appointments
  • Social isolation, supports, engagement
  • Meals and their delivery
  • Other medical/health needs

Local Authority Community Response Forum helpline numbers:

Local Authority Community Response Number Email
Carlow County Council 1800 814300 covidsupport@carlowcoco.ie
Cavan County Council 1800 300 404 covidsupport@cavancoco.ie
Clare County Council 1890 252 943 covidsupport@clarecoco.ie
Cork City Council 1800 222226  covidsupport@corkcity.ie
Cork County Council 1800 805 819 covidsupport@corkcoco.ie 
Donegal County Council 1800 928 982 covidsupport@donegalcoco.ie
Dublin City Council 01 2228555 covidsupport@dublincity.ie
Dun Laoghaire Rathdown County Council 01 2713199  covidsupport@dlrcoco.ie
Fingal County Council 01 890 5000 covidsupport@fingal.ie
Galway City Council 1800 400 150  covidsupport@galwaycity.ie
Galway County Council 1800 928 894 covidsupport@galwaycoco.ie
Kerry County Council 1800 807 009 covidsupport@kerrycoco.ie
Kildare County Council 1800 300 174 covidsupport@kildarecoco.ie
Kilkenny County Council 1800 500 000 covidcommunity@kilkennycoco.ie
Laois County Council 1800 832 010 covidsupport@laoiscoco.ie
Leitrim County Council 071 9650473 covidsupport@leitrimcoco.ie
Limerick City & County Council 1800 832 005 covidsupport@limerick.ie
Longford County Council 043 3344255    covidsupport@longfordcoco.ie
Louth County Council 1800 805 817   covidsupport@louthcoco.ie
Mayo County Council 094 906 4660  covidsupport@mayococo.ie
Meath County Council 1800 808 809 covidsupport@meathcoco.ie
Monaghan County Council 1800 804 158 covidsupport@monaghancoco.ie
Offaly County Council 1800 818 181 covidsupport@offalycoco.ie
Roscommon County Council 1800 200 727 covidsupport@roscommoncoco.ie
Sligo County Council 1800 292 765 covidsupport@sligococo.ie
South Dublin County Council 1800 240 519 covidsupport@sdublincoco.ie
Tipperary County Council 076 106 5000 covid19@tipperarycoco.ie
Waterford City and County Council 1800 250 185 covidsupport@waterfordcouncil.ie
Westmeath County Council 1800 805 816 covidsupport@westmeathcoco.ie
Wexford County Council 053 919 6000 covidsupport@wexfordcoco.ie
Wicklow County Council 1800 868 399 covidsupport@wicklowcoco.ie

MND, Self-Isolation and Me (Mairead Coleman)

Mairead Coleman is living with MND and can no longer speak. Mairead was our Sponsored Silence Ambassador in 2019 and what a formidable one she was!  We are so grateful for the awareness she has generated for people living with MND. She is one of the most positive, focused and caring people we know. She has a unique ability to see the good in everything.

So, we asked Mairead how she is getting on during these difficult times.

Over to you Mairead…

 

 

I’ve been staying at home now for 3 weeks, no visitors allowed at any time, family or friends etc.

Michael my husband has been doing any necessary shopping etc since then. His company decided to take all reps off the road so he’s been working from home for the last two weeks.  Hannah my daughter is home from college also.

For me, I’m quite enjoying having Michael and Hannah at home with me albeit Michael is busy working and Hannah is doing college assignments.

I’m still able to prepare meals so we all sit together at mealtimes. In the evenings,  we enjoy watching TV or movies and chatting to each other.  

I potter around the house and do a few easy chores each day. The weather is great at the moment which makes being at home a whole lot easier.

I keep in touch with my family through Skype. For me its great that I have a medium where I can still communicate by typing (I can no longer speak due to MND) and my family can chat away and seeing them especially my Mum and Dad, knowing they’re ok is comforting.

I keep in touch with my friends through WhatsApp and text. We have little friend groups on WhatsApp and we share funny stories and videos etc. This keeps us all in good humour.

I’m usually a very social person so before Covid-19 I would have met with family and friends a couple of times a week.  I quite enjoy having this time to myself at the moment.  Its lovely not having to be anywhere at a certain time or place such as appointments etc. I feel more relaxed and rested and I’ve realised that I needed time out, so I’m enjoying it very much. 

We all have to do our part to slow down and stop the spread of the Coronavirus.  Its frightening to see and hear all the stories where the virus has taken family members, friends and loved ones so we must take the advice of the health professionals and our government and keep our fellow country folk safe and well.

This won’t last forever so let’s all join together, stay at home, enjoy your family.  Take time to rest and recharge. 

Thank you to all the medical staff who are working so hard to save patients and putting their own lives at risk. Thanks to all the people who we don’t see, working away in the background,  in offices, shops etc.

Coronavirus (COVID-19)

What you need to know about COVID-19

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called Coronavirus.

It can take up to 14 days for symptoms of Coronavirus to appear.

Social distancing measures continue to be paramount and every citizen is being asked to take the necessary precautions.

 

 

 

Anyone with concerns that they may have come into contact with a person who has Covid-19 should contact the HSE Live Helpline on 1850 24 1850. If you are unwell with cough, especially with respiratory symptoms (e.g. cough, high temperature, shortness of breath, difficulty breathing, fever) you should isolate yourself immediately and phone your GP.

 

Some helpful answers are here: Corona F

For the most up to date information and advice on Coronavirus, please go to:

Big Life Fix Features Young Mum with MND

Our dear friend Roisin Foley is living with MND and featured on RTE’s series Big Life Fix to see what Marino Software had up their sleeves to help the mother of three.

The team at Marino Software worked with Róisín to develop the technology that will allow her to communicate after she has lost her voice – in her own voice.

We have had a lot of people asking about the software, so all you need to know is here 

 

Self Isolating Poster

Downloadable poster available here for those who may wish to self isolate.

The poster can be used to let those who are visiting your home know that someone here is self-isolating and to take the necessary measures when visiting or delivering something.

Click the button below.


Download Poster

24 Hour Spinathon Upperchurch to Tokyo

Calling all spinners!!!

Upperchurch-Drombane GAA Club need you! To cover the distance from Upperchurch to Tokyo in 24 hours; approximately 480 participants are needed! Each expected to cycle for 60 minutes.

Funds raised to Upperchurch-Drombane GAA Club and the IMNDA.

It will be taking place on Saturday 25th / Sunday 26th of April.
The location is the Community Centre in Upperchurch Village, Thurles, Co. Tipperary. All welcome.

Email spinathon2020@gmail.com or call 087 7459506 / 0877412420

Annoucement: Thank You Event Postponed

Announcement: Due to the ongoing Coronavirus outbreak, we have decided it’s in the best interests of our MND community to postpone our Thank You event scheduled for March 27th.

Keep an eye on our website and social media channels for further updates.

 

Thank you

IMNDA: We have a new home

After 20 years based in Coleraine House, we have moved across the River Liffey to our new home. Our address is below. Thank you to all the MND community for your continued support.

 

VHI Women’s Mini Marathon 2020 (Postponed)

On the advice of the relevant statutory authorities, the 2020 Vhi Women’s Mini Marathon, scheduled to take place on Sunday May 31st, is postponed. This decision has been taken in light of the growing threat presented by COVID-19. The event will be re-scheduled to Autumn. Date TBC soon. Watch this space & remember we will need your support this year more than ever before.

On Sunday 31st May 2020 thousands of women will take to the streets of south Dublin for the annual 10k mini marathon – are you going to join them?

Register your place today for just €25 per person by Clicking Here and run the race to make a difference. Once you have your place secured please drop us a line to get your sponsorship cards and IMNDA green t-shirt. We will be there on the day at our usual base upstairs in Toner’s Pub on Lower Baggot Street – near the start and finish line. IMNDA participants access only, leave your bags in a secure place whilst you pound the streets!

The 10k starts at 2pm from Fitzwilliam Street Upper – check out the course route here.

Don’t delay – start your WMM fundraising today! Just complete the form at the bottom of the page or email fundraising@imnda.ie / call Gemma or Jackie on 01 873 0422. Don’t forget to set up your online fundraising page too!

Register HERE for your Mini Marathon Pack

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Client Holistic Therapy Grant

 

 

Did you know the IMNDA is offering a grant that covers the cost of 6 holistic therapy sessions for our clients? Therapies like physiotherapy, reiki, reflexology, massage and acupuncture are all covered under this grant. All six sessions must be from the same provider.

What is holistic therapy? 

‘Holistic’ comes from the Greek word holos, meaning ‘whole’. It is considered ‘an approach to health that considers the whole body and environment when offering treatment. It focuses on the mind, body and spirit of a person.’

Please note: The six sessions must all be availed of from the one provider.

We may ask recipients to complete a short feedback form to help to highlight the difference the grant has made. We appreciate you taking the time to complete this as it enables us to evaluate the impact of the grant.

If you would like to avail of this grant or have any further questions, please contact Johanna, our Information and Support Officer, on 01 871 7800 or services@imnda.ie.

 

The JAM Card (Just A Minute)

 

What is JAM Card and who is it for?

JAM Card allows people with a communication barrier tell others they need ‘Just A Minute’ discreetly and easily.

Transport for Ireland alongside Bus Éireann, Dublin Bus, Go-Ahead Ireland, Iarnród Éireann Irish Rail, Local Link and Luas are beginning the journey to becoming JAM Card friendly. The Jam Card will assist customers using the public transport system and make their experience as stress-free as possible.

We have JAM cards here in the office and if you wish to receive one, contact us at services@imnda.ie. The cards we have in available say ‘please be patient, I have a condition’.

The JAM Card allows users to relay to others that they may need a little extra time in a simple, effective non-verbal manner. The JAM Card is useful when on public transport, in a retail or any other customer facing environment.

The JAM Card© was created by NOW Group, a social enterprise that supports people with learning difficulties and autism into jobs with a future and their service users told them that they would like a way to relay to people that they need a little extra time or patience.

 

 

 

£170,000 (over €199,000) raised for the IMNDA

We are completely overwhelmed and incredibly grateful for the fundraising efforts of all involved with the London to Ballaghaderreen Cycle that took place in September.

This cycle brought in an astonishing £250,000 in total with £170,000 (over €199,00) presented to the IMNDA at the official cheque presentation which took place in The Claddagh Ring pub, London on Saturday 23rd November.

The bike ride was organised as a tribute to Frank Kelly (Motor Neurone Disease) and Joe Lynch (Alzheimers Society) and nobody could have predicted the level of support the cycle received!

We are truly blown away with the amount of funds the cycle generated; from the bottom of our hearts we want to say thank you thank you and thank you to all who took part, organised, donated and helped whether you were in London or Ireland. Together you have made such a difference to people living with MND.

Getting to Know Our Nurses – Louise Hennessy

 

It was the money raised from the late Fr Tony Coote’s 550km walk from Donegal to Cork that enabled IMNDA to hire a fourth full time nurse, Louise Hennessy. Louise joined the Association in April of 2018…

 ‘Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time, we become confidants and friends.’

Did you always want to be a nurse?

I actually wanted to be a teacher but I didn’t get the points! Nursing was a close second choice though. In one way I actually now have the best of both jobs. A major part of my role is to be an educator and advisor to our clients, families and MDT and I don’t have to deal with hormonal teenagers.

What do you do with the IMNDA?

My main role is to be an advocate to our clients and families. Clients and families can feel in limbo after receiving their diagnosis. There are no signposts on how to access services and help. This is where the IMNDA steps in to help guide our clients along this journey. We do this by visiting clients in their homes where they feel safe, not in clinical sterile areas where it can feel so impersonal. When we visit you, you are our only priority.

How long are you working with them?

I joined the IMNDA in April this year. It was only made possible by the mammoth fundraising efforts of the late, great Fr. Tony Coote.

What do you love about your job?

I love that it is challenging, interesting and makes a difference in people’s lives. Connecting with clients and their families and helping them through the good and bad times. I enjoy communicating with clients and helping them understand the disease and how it is effecting them and therefore how we can manage it and support the client and family.  I love the challenges and learning from each experience. You never know what the next phone call will entail. Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time we become confidants and friends due to the trust our clients place in us.It is a special privilege to fulfil these roles and to have people open up their homes and lives to you.

What challenges do you face in your role on a day to day basis?

The main challenges are access to services and support. By having clients referred and assessed in a timely manner can save many issues from happening further down the line.  Our aim is to make this journey as smooth as possible. By having the necessary supports in place and available to clients and families we can avoid a crisis and strain on the family.  We also face emotional challenges in supporting those who are near the end and the families of those that have passed. But with the support of our colleagues and MDT we can go on to care for our next client.

What do you think is lacking in the care/assistance for people living with MND?

There is major lack of help to keep people living safely at home with their families and friends. The HSE needs to invest more in to home care hours and respite to give our clients the support they deserve.  However, sometimes living at home is not suitable for some people so having the support of the hospice and long term care homes available in a timely manner is important.

The amount of paperwork people have to complete is mind boggling. Clients and family need access to necessary medications, benefits, allowances and services in a time sensitive manner but this is hindered due to the lengthy process of dealing with numerous departments and forms.

Do you think there is enough awareness of this terrible disease?

I think awareness is growing in recent years but there is more work to be done. Not only for fundraising efforts but for the medical field so people’s symptoms are picked up and they are diagnosed faster.  With recent campaigns such as Walk While You Can, Drink Tea for MND and the amazing Fr. Tony Coote it is in the public eye. I’ve heard a lot recently where someone has been newly diagnosed that they partook in the Ice Bucket Challenge and not knowing what it was really all for now to be needing those funds for equipment and services.

As you visit people living with MND in their own homes, how important is it to keep people at home?

Clients feel their happiest when they are in their own environment, their home and their community. By being able to live at home with the necessary supports they will have a better quality of life and be able to make lasting memories with their loved ones. Thankfully the IMNDA have amazing grants to help support people at home.

Finally, what impact does donations make to people living with MND?

Without donations we couldn’t do any of our work and therefore clients and families would be alone in this journey. Not only is providing equipment important but also provided support to the client and family. Our wonderful grants this year have been a benefit to every home I visit. Whether it be the day respite grant where a wife can go out meet her friends or attend an appointment for a while. The housekeeping grant also takes that extra burden and duty off a loved one so they can spend quality time with their family and friends. These moments of respite can be the difference in someone coping and not coping.

 

 

 

 

 

AGM 2019 Presentations- Professor Orla Hardiman

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Professor Orla Hardiman Head of Academic Unit of Neurology Trinity College gave her presentation MND- Time for Optimism.

Main Highlights:

  • What happens in a multidisciplinary clinic and what to expect
  • New developments and research to improve outcomes
  • Funding for TRICALS (trials consortium to cure ALS). Hopes €40 million will be raised in 5 years to provide a roadmap to new trials
  • In Ireland, €800,000 is needed over 3 years to participate in the first TRICALS trials
  • Investments made in staff in terms of talent and research
  • International genetic research into MND
  • New investigator led research

 

You can see the full presentation here- IMNDA Oct 2019 Orla Hardiman