MS Ireland
Informing, Supporting and Caring for the MS Community
Palliative Care Services in Ireland can support the primary care team and hospital teams in responding to complex symptoms – and provide advice about interventions that will maximise the quality of life of the individual with a life limiting disease. Depending on the stage of the disease, this approach is often introduced alongside existing treatments that a patient receives to maximise their independence.
Specialist Palliative care services are provided by the HSE in partnership with voluntary service providers, and these teams work in community settings, acute hospitals and within specialist inpatient units (hospices). Referral to the Specialist Palliative Care team is made by the medical team or GP.
Traditionally specialist palliative care services developed around the needs of people with cancer, however increasingly these services are responding to those with other life limiting disease – including those with MS, who have complex symptoms that cannot be routinely managed by their own specialist or GP. Your local GP, Primary care Team or MS Regional Worker will be able to guide you if this is an area you would like to explore this further. The Irish Hospice Foundation’s Palliative Care for All Programme is currently exploring how palliative care can be extended to everyone who needs it, regardless of the nature of their illness.
As MS progresses, it can be frightening to see your loved one’s abilities change. It is important to talk with your loved one about the kinds of medical care that he/she wants to receive, particularly if MS continues to progress. Talking about this is difficult, but it is crucial if you want to ensure that the wishes of the person with MS are followed in case he/ she can’t communicate those wishes in the future.
Choice belongs to the person who has the illness. Modern medical ethics supports the right of each individual to make his or her own medical decisions within the confines of Irish legislation.
As to cause of death for people with MS, many die of complications related to their disease. However, many also die from issues such as cardiac and vascular disease as well. As more patients with MS survive to older ages, a greater proportion can be expected to die of causes unrelated to MS. It is not unusual for families to uncover conflicts during this process of decision making, as it can trigger strong emotions and unresolved issues. Remember, it is acceptable to agree to disagree.
Often those who are more comfortable with mortality issues can be found on one side and family members who are hoping for a cure and don’t want to talk about end-of-life are on the other. If you know of someone who is skilled in facilitation, invite him or her to the table to help the conversation.
There are many questions that can arise as the end of life approaches. It is important to think about choices that may need to be made. Family members need to be clear on all of these issues:
Decisions revolve around how aggressive medical treatment and management should be. There is no right or wrong answer. It is a matter of personal preference, values, and quality of life. Opinions and thoughts of the same person might differ over time as well, particularly if a critical hospital emergency occurs, so it is important to revisit these medical discussions periodically. See this website for more information on Advanced Healthcare Directives
Because of its focus on quality of life the palliative approach to care is appropriate throughout the journey of those with MS and not just at the end of the life.
For a person with MS, palliative care might include pain relief, the management of swallowing difficulties, or prevention of pressure sores. It could also involve supporting the person to plan ahead and make the most of their life, finding ways to participate and get fulfilment form activities of interest and maintain relationships. Health care professionals are increasingly recognizing the importance of adopting a palliative approach to care of people with MS, and also availing of the advice and support of the specialist palliative care team for symptoms that are complex.
Palliative care can be utilised as a complement to MS comprehensive care; ideally both can be provided in an integrated way to enhance the care that each can offer the person with complex or challenging symptoms and help them plan for their future.
The palliative approach also provides support to families and/or those who are important to the patient, and extends its reach into bereavement. This holistic approach to care should integrated into the routine care of those with life limiting diseases and available in all care settings – i.e. people’s homes, a hospital or a residential care setting, as well as the actual hospice building.
There is no question that it is not always easy to identify a terminal phase of MS, even if someone has been confined to bed with significant health issues for a long time. However, if your loved one is clinically compromised and coping with significant respiratory weakness, UTI infections leading to sepsis, critical nutritional impairment, or other life threatening complications, you might look into hospice as a potential support for you. Although there is no definitive check-list that end of life is near, these might be triggers for seeking hospice support:
This week Emma Rogan writes about Pride. The MS community is a mix of humanity- straight, LGBTI, different ethnicities, cultures and experiences. For Emma, the power of the MS community, the value of being visible and the progress in patient empowerment is worth celebrating. This article puts two important aspects of my life together and I wondered how to do it. What is pride about? Is it about identity? Is it about confidence? Then I stopped wondering. This story is about when I stopped pretending I was someone I wasn’t and began to be who I was meant to be. Twice. As uncomfortable as it was at the start, there could not be any other way. I ‘came out’ as gay to my family in my teens. It was a surprise to some; it confirmed for others what they always thought (my affinity for Doris Day movies was NOT for the Cary Grant cameo and yes, I was infatuated with Steffi Graf) and other people I lost contact with. Little did I realise that my ‘coming out’ would help me later on in life when I was diagnosed with MS. I’d walked the fear-paved path before, disconnected from my family and friends. Some of the disconnection was all mine as I struggled to find the words for what I was going through. I took myself away to the city, looked for people like me, built connections with other souls and gradually came home in myself. But when I returned, the greatest surprise was the welcome, the embrace from my family and friends when I did reveal my glorious self. When I was first diagnosed with MS, the questions rose again. Who do I tell? How will they react? What will they say? When do I tell them? How will I tell them? What do I say when they react to me? Where are the other {young}people with MS? All the questions I had coming out built a resilience I never appreciated until I had to tap into it, again. In the past, I’ve said that disclosing I have MS to people is like coming out. Yes, in that I’m making myself vulnerable and telling someone something about myself that is different to the typical human experience. And no because I’ve learned the hard way that difference is something humans notice and being noticed can be dangerous. Thankfully, it is here that the power of community and patient empowerment has made all the difference; despite the danger I wouldn’t have it any other way. I couldn’t find other young people with MS to talk to when I was first diagnosed so I set up a Meetup group. Since 2010 we have been meeting monthly in the IFI Cafe in Dublin, every time creating a safe space for people newly diagnosed (6 weeks was the newest person) and the more long-time MSers can get together and talk. There is no obligation, the only expectation is that you be yourself and allow others the same respect. This for me is what pride is about- celebrating my unique human experience while allowing others to do the same. As patient pride/patient empowerment progresses and the other stakeholders move over to allow the patient at the table, the situation for people with MS is improving. But we must remind ourselves of the person with MS who today is in an inadequate healthcare facility or to the person unable to access counselling or to the newly diagnosed person shuffled out of a clinic with just leaflets to hold onto. Visibility is important not just for ourselves but for the people struggling with life with MS, those who will be diagnosed with MS and for better public understanding of this traumatic condition. Being visible isn’t for everyone, we know it is dangerous, but for those who do choose to join the movement, there’s a whole lot of us waiting for you. The Dublin MS Meetup Group has more than 200 people with MS as members, meets every month in an accessible location in Dublin city centre and welcomes newbies. Join up here: https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/ Check out Emma’s blog https://republicofemma.wordpress.com/ and follow Emma on https://twitter.com/emmadragon
Greystone's Scribblers was established in 2009 by MS Ireland's East-Wicklow branch. They recently published their inaugural publication of poetry and short stories, First Flight. This is an inspirational book of well-honed stories that amuse, entertain and sometimes pull at the heart strings. This initiative was facilitated by Carol Boland with financial assistance from the Wicklow County Arts Office and we cannot thank them enough for their support. World MS Day brings the global MS Community together to share stories and raise awareness for everyone affected by MS. Greystone's Scribblers launched First Flight on this day, May 30th, with guest speaker Ava Battles saying "I have read this book cover to cover and some of the stories pulled at the heart strings, while others you simply had to laugh at them. I highly recommend this book to everyone to read". 100% of the profits will go the National MS Care Centre in Bushy Park. It is available to buy in Dubray Books in Bray, Supervalu, Sam McCauleys chemist and the Village Bookshop in Greystones, the Wicklow Bookshop in Wicklow Town, and also from boland-press.ie. You can also buy it online here or call the National office or the MS Care Centre for your copy.
Sunday 17th is Father’s Day and this week Keith Byrne describes the joys of being a Dad. Read on for how he’s balancing life tasks so he and his family stay healthy and how being open to challenges helps him build resilience while living with MS. Stress can be the catalyst for the onset of many illnesses. Coping with a full-time job, a young baby and a chronic illness all at once can certainly be described as stressful. This is never easy. Particularly when they can all be so demanding at the same time. I'm learning to take a different perspective so the demands don’t take over. Being a father to a 17-month-old can often mean restless nights, followed by a long day in the office then home to spend some (brief but) quality time with my son before his bedtime. Only to do it all over again tomorrow. It sounds tough and I suppose at times it is. At least if you apply effort into your work you might get the occasional thanks. Not so with a baby. Bringing things into perspective, the morning and evening times when I get to hang out with Oliver and see him showing off what he's learned is beyond comparison. His latest feat comes when asked “What does the lion say?” and he answers with a big "ROAR!". I couldn't be prouder! I find routine can be the best way to keep stress levels to a minimum. Time is such a precious commodity that it needs to be used wisely. I have yet to master this skill but if you have any tips please do share in the comments section below. Regimented tasks in our house, such as the weekly shop or cleaning floors each night before bed, are of given almost critical importance. And then stress levels rise when routine is broken. Actually, it's helpful just to take a step back, realise that it's not the end of the world and take another view. Once he's happy and healthy, that's the priority. I need make sure his Daddy is happy and healthy too. MS can bring with it pain, fatigue, uncertainty and many other symptoms. Because of this I've started to challenge myself more. I'm almost putting myself in stressful situations so I can learn to cope with it better. Whereas before diagnosis I would have avoided them at all cost. I plan on running the Dublin Half-Marathon in September and now I've also signed up for the Full Dublin marathon in October. For me staying active and eating healthy are just as important as medication when it comes to tackling MS. Keeping a determined and positive mindset will definitely give me a better chance of staying relapse free. It should also help me sustain a happy and healthy lifestyle. Although with MS this is never guaranteed. Those thankless and sleepless nights, were you just feel you can't do anything right for your child, can be testing. Luckily those nights have been few and far between. But they can have a knock-on effect and leave me exhausted throughout the days that follow. Still, those sleepless nights can lead into playful days. Those rosy red cheeks and teary eyes have led to big white teeth. And those cries of frustration at him not being able to say what he wants led to a voice that now says "Dad"; and that means more to me than thanks ever could. I wish every MS Dad a great Father’s Day and look forward to reading your comments. Keith has set up a charity page for the marathon for anyone who would like to support him as he raises funds for MS Ireland: https://give.everydayhero.com/ie/half-marathon-for-ms Keith also writes a blog where he shares on his life: https://keifib.wordpress.com/
Next week, 11th to the 17th June, is Carer’s Week in Ireland. We’re delighted to have Guest Blogger Gemma Donnelly Cox writing about being a Carer and how she balances life in the ‘here and now’ while also planning for the future. Caring, for me, is about enabling and empowering my husband to live the life of his choosing to his highest potential. Simple, eh? I’m not so sure. Over and over again, I am torn between goals that, at times, conflict. And I’ll bet this happens to every carer; maybe not the same goals but tension nevertheless. Currently, the ones that preoccupy me have to do with timing and with attitude. When I say timing, I mean whether to focus on the present or the future. A whole lot of enabling and empowering is about making the most of every day; doing today’s work today. Right now, I’m typing this blog and Alexis, my husband, who is quadriplegic with progressive MS, is using voice control software to work on his computer. Our son has just left the house to go bouldering at the climbing gym up the road. We are all enjoying the here and now this afternoon. Much of the time, however, I feel as though my focus is planning for the future, leaving little room for the present. So much thought goes into what I know lies ahead and also to planning for the unknowns. What if Alexis’ voice starts to weaken further and he can’t use voice control software? Should he be using eye control now, just in case? But what if his eyesight starts to fail? Worries about the future can rob you of ‘the now’ as you flail around trying to prepare for what might emerge. But if you only stay in ‘the now’, you could very well end up not being ready when one of these MS issues suddenly rears its head. Right up there with timing is attitude. It seems to me that so much of what is joyous in life is about knowing when things are good, celebrating them and being grateful for them. Like right now blogging about how it feels to be a carer. A lot of the time, however, gratitude for the good things can be in tension with putting mental energy into staying vigilant and being ready to advocate. For example, Alexis was recently invited to a dinner with people who know a lot about MS. I was looking forward to going with him and slacked up on my usual advocacy of making his requirements clear to the hosts. I figured that people in the know would get it right. Wrong. The hosts invited a quadriplegic guest seated in a large wheelchair to a venue where the tables were way too low for his chair. The path to the (too small) space at a table- in the middle of a room, full of seated diners- was impossibly narrow. It does not have to be like that folks! It’s hard to be grateful for a nice night out when your husband can’t reach the table and your advocating would have made it different. When I feel I’m getting the balance right managing the tension between timing and attitude, I am far happier and more confident in my Carer role. But before I sign off, I’d like to add one more tension, the one that can arise between caring and self-care. During Carer’s Week, we’re reminded that Superwomen and Supermen stay sharper when they take care of themselves. I was reminded of this back in the autumn when I was away for the weekend by myself (a super duper self-care step) and I came across a young couple in their 20s. The carer in the partnership was a real Wonder Woman. But she was wrecked tired, more tired than I remember being at her age and stage. I had time on my hands and tried to help out. She knew I was up to the job but she simply couldn’t let herself stop. Carers, none of us last forever but if you want to be in for the long haul and really make a difference for your loved one, you’ve got to take care of yourself too. For many carers, I guess that’s the hardest thing. Gemma and Alexis Donnelly live in Dublin with their son Finn and Labrador Retriever, Elmo. In 2016, Alexis joined the Scientific Steering Committee of the Progressive MS Alliance. His carers have supported him to fulfil his role in the Alliance. For more on the Progressive MS Alliance and the exceptional work that it does in pursuit of its aim to understand and overcome some of the biggest barriers to treatment development for progressive MS, see www.progressivemsalliance.org
This week Niamh McCarron shares her experience of having MS and working. Read on for her story of working and striving to stay professionally active and financially secure. As I write this blog post I am on my way to a conference for my day job. This is a good example of how my work and MS life are intertwined. I am often “robbing Peter to pay Paul” timewise, energy-wise and pain-wise. The truth is, most people have to work, there are very few of us who have the resources to pack it all in and retire at 30 or 40. For people with MS, I think most of us plan (and hope) to work for as long as we can. Of course as illness progresses, this choice can be taken away from us. I am writing this post from the fortunate position of still being well enough to work,. I’ve blogged about my MS Fears before. One of the things I am afraid of is having to stop working. I’ve been working in the same company for more than a decade and have built a solid career for myself. I work hard, I enjoy what I do and I am part of a great team of people. Giving up work would have a massive impact on my household financially, but it would also take away my independence and part of my social life too. I’ve had to make some adjustments over the years and I’ve occasionally had to ask work to accommodate me where possible, and reasonable, to do so. Because I was diagnosed while working here, my colleagues have known about my MS as long as I have. I think that has helped. I didn’t have to tell them about it, it just became part of me and my life. I understand why others might feel that they can’t or don’t want to disclose their MS to their workplace. It’s a very personal choice to make. For me it would have been an extra layer of pressure to deal with, so I am glad they all know. Plus I am a blabber mouth and have blogs all over the place. It’s not exactly something I can hide at this stage! In 2016 MS Ireland launched a set of Employment Resources to support people with MS and their employers. I encourage people to have a read through them, particularly if you are considering disclosing your MS at work. There are some great tips from others with MS as well as practical advice on what you can reasonably expect from your employer (and what an employer can do in terms of reasonable accommodation for a member of staff with MS). I also think it’s great to highlight that so many of us are working away in our chosen jobs. MS doesn’t always mean the end of life as we know it. I plan to still be here in the next 10 years, hitting the snooze button for “just 2 more minutes” and dashing about the place trying to juggle work, home and other commitments. I’m determined to try, for as long as possible! Links to Employment resources: https://www.ms-society.ie/blog-articles/2015-launch-of-employment-resources Working With MS - Employment Resource for People With Multiple Sclerosis Working Out MS in the Workplace - A Practical Toolkit for Employers Multiple Sclerosis and Employment - Facts and Figures
World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by MS. Getting involved is easy! See how you can make a difference!
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26 June 2018: Physiotherapist designed and led exercise programme for people with MS.
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