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:
Watch talks from Professor Gavin Giovanonni; Dr. Jens Bansi; Dr. Kate O Brien, Genomics Medicine Ireland; Dr. Sabina Brennan.
Download MS Ireland's Care Centre Business Case, presented to TDs and Senators in Leinster House.
New website launch Neurological Alliance Ireland (NAI) have launched a new website as part of the Love Your Brain campaign. The campaign aims to promote greater awareness and understanding of the brain and brain conditions as well as the need for more investment in services, research, and prevention. National Brain Awareness Week 11th - 17th March 2019. To find out more, visit Love Your Brain website includes events happening near you. Follow on twitter using the hashtag #loveyourbrain2019 #brainawarenessweek2019
On this Valentine’s Day when many of us choose to celebrate romantic love, Christina McDonald and Niall McGahon give us their take on MS and Romance. Christina We see it all around us. On the streets, in movies and in songs, love and romance. They are everyone’s desire at some point. I was diagnosed at 26 in the common age range for an MS diagnosis (20s-40s). These are also the years seen as someone’s prime years- in college, looking for love, perhaps settling in with someone, building a career, getting married and all the typical life-steps. MS at times has changed how I view myself as a woman. Questions constantly loom such as “am I a burden for my partner?” or “am I still attractive when my symptoms peak?” or “have I embarrassed you in public? “Am I still fun to be around when my fatigue is bad? Sometimes I wish I could be more spontaneous and that I had more energy like I used to before MS. It can be difficult to maintain a romantic relationship when you’re living with MS but with two people who compromise and understand the difficulties that may arise from MS, they can plan around what suits their needs and keep the spark alight. The thing is, I am not my disease, I am not MS. While those questions might go through my mind, I know that when my partner looks at me, she still sees the person that she fell in love with and not the condition. Although we might not go out for date nights as much as we used to, we still make a joint effort in bringing a date night to us. This includes nights in with a movie and takeaway - Netflix and chilling out. We tend to do things earlier so that I have more energy. Compromise is key for myself and my partner when it comes to MS and romance. I see myself as lucky because I had found “the one” before my diagnosis so I didn’t have to worry about how to tell someone I’m dating about my condition. My partner has been with me every step of the way. Niall’s Perspective I think it’s fair to be said most men don’t live up to the Hollywood romance and the way it’s sometimes portrayed but god do we try our best! By the time of my diagnosis at the age of 34, I had met my beautiful wife and we were 4 years married. We now have a beautiful son and another on the way. Like Christina, I never had to go through the process of having to tell someone about my condition. I thank god every day for that because without my wife going through this process with me, I don’t think I would be as strong as I am now. One of the definitions I found for Romance was: “feeling of mystery, excitement, and remoteness from everyday life” Quite apt for both MS and romance with a loved one. The illness fills your head full of mystery about the future and sometimes pulls you back and isolates you into a remote-ness from your everyday life. MS gives you a kick in the nuts, excuse the pun, from an in-timacy perspective. I’ve found myself questioning myself on countless occasions “Jesus you’re useless…”, “how embarrassing…” and as time progresses this can eat at you and sometimes it’s easier not to try. Thankfully I get a kick up the ass and get pulled out of whatever dark room I may have entered. All because the person who, 13 years ago filled my head full of mystery of what could be, of excitement of what was to come, took me to a remote place that was only her and I. To me romance is not necessarily about the big gestures; it may have been that a few years ago. Sometimes the smallest of things can be the most romantic. The spontaneous back and foot rub, the dinner made or simply the holding of hands. These all may seem the easiest for most. However when you have little feeling in your dominant hand these tasks become even more challenging but more enjoyable and appreciated when they are done. Christina is right, Netflix and chilling on our own sofa is a bloody good date night too! My perspective on life with MS is about team work. Like Christina, we are not MS, it doesn’t define us. We have the full understanding that the love that we first found all those years ago is not going to be broken by MS, we are only going to get stronger. Ro-mance is not dead, it has just taken on a different form and that’s ok because it will never disappear.
Research Request What is Parental self-efficacy? Parental self-efficacy describes the beliefs one has of their ability to manage and perform the role of parenting successfully. Who is carrying out this study? Rachel Mc Laughlin is a 4th-year Occupational Therapy student in NUI Galway. This research is being completed with a final year university project. This study will run between January and April, 2019. Aim of study Your participation in this study will add to knowledge on how MS can affect parents, specifically through levels of fatigue and parental self-efficacy. It is hoped that this information will lead to an improvement in health services in the future. Who can participate A parent with MS with a child/children between 2-18 years old? If you are interested in participating in a study looking at the impact of fatigue on parenting please read the information sheet to find out more about this study and if you are eligible to participate Get in touch Contact the researcher at r.mclaughlin5@nuigalway.ie who will happily answer any questions that you may have.
We are so excited to announce that we have teamed up with Emma Larkin, a jewellery designer who is based in Galway. Emma has designed these small little kisses to wear on your lovely lobes. So now you can show your support and help us Kiss Goodbye to MS! Emma is supporting our Kiss Goodbye to MS campaign as MS is a condition that she has been surrounded by for her whole life. Emma’s mum was diagnosed with MS before she was born. “I am aware of the good and the bad days that MS can bring but I think trying to have a positive attitude, can go a long way. My mum has been a great support in my life so it means a lot for me to take part in this Kiss Goodbye MS campaign”. Emma has recently started her own jewellery business and her work is on sale both online and in selected shops. You can check out more of Emma’s amazing designs here. So what are you waiting for? These stunning Kiss Goodbye to MS lip earrings are subtle and add a touch of glamour to your everyday! So head to our shop or call one of our team on 01 6781620 to place your order today! Our earrings are priced at €11.00 including post and packaging. 50% of the cost will do directly to Kiss Goodbye to MS.
Research Request We have been approached by a postgraduate student of psychology at Trinity College who is researching whether young people aged 14 -18 years who live with chronic pain have different worries and beliefs about worry, from their counterparts who do not live with chronic pain. Aim of study This study is the first step in understanding beliefs about pain and about worry in a sample of adolescents, who experience chronic pain, and to compare and contrast this with a sample of adolescents who do not experience pain. Get in touch If this is a study you would like to take part in, please email Aoife aoifek@ms-society.ie
Can you imagine the adrenalin rush after jumping out of a plane at 10,000FT? Well wonder no more! Sign up to our Skydive for MS in 2019 and find out for yourself!
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20 February 2019: Support group for people living with MS in the Newmarket area
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