News

The World Health Assembly (WHA), a subsection of the World Health Organization (WHO), has declared September Pain Awareness Month. Up until the 1980s, many people, including those in the medical profession, believed there was no pain associated with MS. Thankfully, research has caught up with patients. Surveys show that as many as two thirds of people with MS experience pain on some level. Yet, only this week when I was explaining my pain to a physio, her first reply was that pain is an unusual symptom of MS!

Dear Friends,

We in MS Ireland are lucky to represent a vibrant and strong community. Our mission is to enable and empower people living with MS to live the lives of their choice to their fullest potential. It is important to us that

we provide you with opportunities to have your voices heard on the issues that matter to you and to support the wider MS community on issues that impact you collectively. One such issue is the upcoming Budget. MS Ireland have submitted our Pre-Budget Submission for 2023 and your support of this would be greatly appreciated. On page 15 you will find a summary of our key asks accompanied on page 14 by a tear-out letter that you can complete and send to your local representative, asking them to support us.

One of our highlights this year was co-ordinating an art exhibition featuring 12 original artworks, created by people living with MS. This opportunity gave these artists the chance to express their thoughts and experiences on symptoms though art... and the results are incredible!! You will find an overview of the exhibition on page 8.

Some very exciting news in MS research was reported on earlier this year, when a group of researchers from Harvard University published a paper which found that the risk of developing MS increases 32-fold after infection of the Epstein- Barr virus (EBV). To read more about this, turn to page 18.

In keeping with this editions theme of taking action on the issues that impact us, we feature pieces by a number MS community members. In the first, Pat McCarthy discusses crime prevention for people living with MS on page 7. On page 20 Paul Dawson writes about Donegal’s first Changing Places step down facility. Page 19 offers a very special update from Yvonne McGoldrick, a writer who had their letter published in MS News almost 20 years ago!

We hope you enjoy this edition of MS News. As always, if you have any comments or would like to contribute, our Editor, Aoife Kirwan would be more than happy to hear from you – aoifek@ms-society.ie

So, here they are.

Tears caused by MS-related neuropathic pain in my left side. 

After 18 years of fighting nerve pain on my left-side and all its unpredictable associated issues, Summer 2022 brought everything to the fore. Thinking about it as the sum of every year with MS, had taught me to perfect saying things like, “Oh, I am fine!”. Clearly, I am anything BUT fine.

In plain English, right at this moment, I am going through the Mother of All Relapses. It is not going well.

A bit like a volcanic eruption, my MS relapses fall into three distinct periods over my life:

Stage 1- Scary! When I was having them but didn't know what was wrong with me.

Stage 2- Boom! My XXXL relapse when I got diagnosed.

Stage 3- The Sequel! Minor relapses or pseudo-ones. I'm hoping for no more number twos, but it’s always at the back of my mind.

UPDATE ON THE ANNUAL GENERAL MEETING

We are happy to announce that Robin Bradley, Noelle Burke and Dr Rebecca Maguire were re-elected by the members on to the Board at the Annual General Meeting.  Thanks to all of you who voted for them.

Anne Restan was also elected back on to the Board by the Council delegates.

Following the AGM, there was a brief Board meeting where Maurice O’Connor was re-elected as Chairperson of MS Ireland and Jacinta Kelly was re-elected as Deputy Chairperson.

Congratulations to Maurice, Jacinta, Noelle, Rebecca, Anne and Robin.

NATIONAL AWARDS

Our 2022 National Annual Awards were presented at the Annual General Meeting which was held on zoom on 17th September 2022.

These awards recognise those who through their dedication and selflessness play a significant role in the lives of others and the progress of the Society. This year we are delighted to announce the three award winners are:

MS PERSON OF THE YEAR – SEAMUS BURKE

CARER OF THE YEAR – SUSAN STEPHENS

VOLUNTEER OF THE YEAR – CELINE O’ROURKE

Alison Cotter is the newly appointed Research and Advocacy Officer and joined MS Ireland in May 2022. Alison has a Bachelor’s Degree in Law and Business from NUI Galway and has previously worked in the Houses of the Oireachtas.

Recently MS Ireland Submitted our Pre Budget Submission which you can read in full here

Summary of key asks for Budget 2023

• An increase of €600,000 in annual investment in the National MS Care Centre
• Sustainable funding for national physiotherapy services for people with Multiple Sclerosis, and other neurological conditions totalling €880,000 per annum across all 9 CHOs
• Provision of a further 100 neurology nurses in order to address unacceptable waiting periods, delays with diagnosis and treatment, with at least 20 to be provisioned in Budget 2023
• MS Ireland echoes the budget recommendations of Family Carers Ireland, the Neurological Alliance of Ireland and the Disability Federation of Ireland.

My name is Shirley I'm 47 years old and I am living in Monkstown, Dublin. I was diagnosed with Relapsing Remitting MS 4 years ago now first receiving my diagnosis on the 4th of July 2018. Being diagnosed felt like a relief, it wasn't really a huge shock to me as my Aunt Jo had been living with MS. I had a feeling a year before my diagnosis as I was experiencing symptoms for a while, blurred vision, vertigo, and weakness in arms were the main ones. 

Liam Morrissey Msc. Ergonomics student at the University of Derby is conducting a study exploring the impact and usability of using exergames for exercise in MS patients.

Summary of key asks for Budget 2023

• An increase of €600,000 in annual investment in the National MS Care Centre
• Sustainable funding for national physiotherapy services for people with Multiple Sclerosis, and other neurological conditions totalling €880,000 per annum across all 9 CHOs
• Provision of a further 100 neurology nurses in order to address unacceptable waiting periods, delays with diagnosis and treatment, with at least 20 to be provisioned in Budget 2023
• MS Ireland echoes the budget recommendations of Family Carers Ireland, the Neurological Alliance of Ireland and the Disability Federation of Ireland.