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:
Advice and support on all matters of dying, death and bereavement
This week Christina McDonald goes deep into the experience of being diagnosed with MS. From being scared and grieving, she’s learned to doing things differently. More than ever before, she’s chasing her dreams. There was something in the words “You have MS” that filled me with mixed emotions and changed my life. The different stages of grief I went through after my diagnosis somehow helped me come to terms with MS. If you are newly diagnosed, it’s important that you know that these feelings are normal. Yes, they may recur, but things do get better. There have been days where I have felt chronic pain and others where I have sat feeling sorry for myself. And there have also been good days. I’ve learned to accept that my body has new limitations. I am still the same person and am still able to do things. I am just mastering new ways of doing them. My diagnosis is not what defines me; it has opened a new chapter in my life. It has given me a new outlook on life and I know I want to live it to the fullest of my potential. After my diagnosis, I started to put my health into perspective. I began looking after my physical and mental wellbeing and started to eat healthier. I feel that I am one of the lucky ones - I’m fortunate enough that my body allows me to do gentle exercise. It’s important to remember to listen to your body and what it is telling you. If you are having a bad day where you need to rest, don’t be afraid to use your voice. The people who love and care for you will understand if you have to cancel plans due to fatigue or bad symptoms. My diagnosis has given me a thirst for a better life and sparked a drive in me to pursue my dreams and ambitions. I know MS couldn’t stop me from achieving my goals but it has definitely changed my perspective on things, especially chasing my dreams. I learned not to worry about the things that aren’t actually important but rather to appreciate the little things that are. I have struggled since my diagnosis but it has also put things into perspective for me. I decided to return to education to do my Masters in primary education and I honestly don’t think I would have had the courage to do it if it wasn’t for diagnosis. Being given an MS diagnosis is tough and it can be scary but I have tried to use it to encourage me rather than frighten me. Research and educate yourself on MS using the wealth of material that there is available. Don’t rely on Google to tell you what’s going on! Educating yourself gives you the knowledge to educate your friends and family and to also spread awareness. If you have recently been diagnosed with MS and are worrying about what happens next, remember MS is not a death sentence. You can still do the things you want to do in life, you’ll just be doing things a bit differently.
Kiss Goodbye to MS for research into Multiple Sclerosis and vital services Multiple Sclerosis Ireland, with the support of TV presenter Lisa Cannon and two young women living with MS, Rosie McCormack and Sara-Jane Tracy, is calling on people to help Kiss Goodbye to MS raising funds for MS research and essential services. Throughout the month of May, supporters are asked to ‘go red’ and to Wear, Dare and Share: to wear red or hold a ‘red day’, dare to get sponsored for an MS Ireland sky dive, and share with friends and family to spread the word. For more information visit www.kissgoodbyetoms.ie Kiss Goodbye to MS is about raising awareness of Multiple Sclerosis and supporting MS Research as well as funding vital services that reduce the impact of MS including physiotherapy, counselling and newly diagnosed seminars. MS Ireland will hold the first MS Research Ball on Saturday, May 26th 2018 as well as a Red Lab Coat Day in research laboratories around the country, reinforcing the research message for Kiss Goodbye to MS. TV presenter Lisa Cannon is proudly supporting the Kiss Goodbye to MS campaign: "I'm delighted to be part of this important cause to raise funds for MS research and services, to help people living with MS. Three times more women than men are diagnosed with MS, with most being diagnosed between the ages of 20 and 40. Please go red this May and wear, dare and share to show your support." Kiss Goodbye to MS is helping to increase the number of countries fundraising for research. In 2017, 8 countries took part raising more than € 1 million. In 2018 12 countries are taking part with the aim to raise more than €1.2 million to fund research and services . Ava Battles, Chief Executive, MS Ireland comments: "While each country embarks on their own unique Kiss Goodbye to MS journey, the global MS community is more collaborative than anyone has seen before. MS Ireland is delighted to be involved in launching this important campaign for the third year running in Ireland to help raise funds for MS research and essential services for more than 9,000 people with Multiple Sclerosis. It's an important campaign for people and family members affected by MS. The campaign is also, significantly about hope, enabling and empowering people with MS to live the life of their choice to their fullest potential.” Rosie McCormack, 27, and Sara-Jane Tracy, 31, both living with MS are part of a squad of MS ambassadors to the campaign. They are among more than 9,000 people living with MS, facing the challenge MS every day. Help Kiss Goodbye to MS WEAR Raise funds and awareness by wearing something red or hold a red day event at work or in the community. Put on your favourite red lipstick, pucker up and share a kiss on your social media platforms using the hashtag #KissGoodbyeToMS. Please text KISS to 50300 to donate €4 and nominate your friends and family to take part. If you don’t fancy wearing red lipstick, any red item of clothing or accessory will do! DARE Dare yourself or someone else to do something out of your comfort zone and get sponsored for it. This year we’re daring people to do the MS skydive! But sky dives aren’t for everyone so please feel free to do a different dare! www.kissgoodbyetoms.ie/upcoming-events/ SHARE Share the message with friends and family to spread the word.
With a combined 175 years of living with the diagnosis of multiple sclerosis, the MS & Me blog team shares some golden nuggets of lessons learned. We asked our cadre of MS & Me bloggers what lessons they might have learned living with multiple sclerosis. Our editorial team was surprised – but then, once we thought about it we weren’t surprised at all- at how similar our contributors’ advice was. Yes, everyone’s MS is different. And just as everyone’s life experience differs, the way we cope with the challenges and adversities the disease visits upon us will vary. Still, there were several common themes running through their responses and we hope you find them helpful. #1 Don’t let others tell you how you should feel, behave, or live your life with MS. Nobody knows your life better than you; listen to your body. Learn to deal with insensitive comments, because people can say the most insensitive thing. #2 It’s okay not to be okay sometimes. Give yourself permission to leave that super hero cape in the wardrobe. #3 Accepting help is not a failure and doesn't mean you are a burden. People who care about you are just as frustrated with MS and want to do something to help. It makes them feel better. The price to be paid for overdoing things can be high, so learn to differentiate between doing as much as you can and doing as much as is reasonable. Ask yourself, “Can an assisted device of some sort make this task easier?” “Would that improve my quality of life?” If the answer is yes, use the damned device. #4 Self-care is not the same as being selfish. It’s okay to put myself first. It’s okay to say, “No”. #5 Don’t be afraid or embarrassed to talk to your medical team about anything… ANYTHING! From sex to toileting to cognition to palliative care and your fears, talk about it. Embarrassment gets in the way of you receiving the best possible care. #6 You have nothing for which to apologize when it comes to multiple sclerosis. MS is not your fault and MS is not something of which you need be ashamed, so MS doesn’t get an “I'm sorry”. Save the apologies for when they really matter. #7 Learn to adapt to the moving target of your ‘new normal’. Make allowances and be realistic about what you can and can't do. Everyone has his or her limits. We just might face them more regularly. #8 Life stops for nothing, not even MS. Don't let the disease stop you from living, loving, and laughing. MS will take the steering wheel if you let it…. Don’t Let It! #9 Be kind to yourself. Living with an oft-invisible illness can be tough. Be grateful for what you have and still be willing to share of yourself with those who make a positive difference in your life and the lives of others. You have great gifts worth sharing. #10 Not everything that goes wrong with your health (or your life, for that matter) is necessarily MS related. If you need to talk it out, find someone you trust to talk to. If it’s a professional, make sure they’re trained and accredited. Bonus Lesson: Don't ignore your medical team's advice. That said, it’s your life. If you have done the research and feel that it’s best for you to disregard their suggestions, don’t go rogue. Let them know what you are doing or not doing, what you are taking or not taking and why because, well…see lesson # 1. Wishing you and your family the best of health. Cheers.
Patients Deserve Better On the day of the sensory-experience café popped-up on Exchequer Street a new website - PatientsDeserveBetter.ie - was also launched to help those affected by MS demand quick and better access to new medicine. New medicines can’t help if patients can’t access them: Irish people with multiple sclerosis (MS) are waiting for medicines that people in other European countries already have access to. This is because the Irish system for making medicines publically available is broken. Once a medicine is authorised by the European Commission, countries like Germany make it available to patients immediately. In Ireland, the process takes an average of 348 days. In some cases it can take over 4 years. Patients deserve better. People with MS can’t wait. Irish people with MS need, expect and deserve quick access to new, innovative and effective treatments through a public system that is fair and sustainable. The solution is a system similar to Germany’s where people with MS get access to medicines as soon as they are authorised by the European Commission. The State and the pharmaceutical company can then negotiate a price for the medicine but patients will not be forced to endure any wait for reimbursement. If you wish to help people with MS get the medicines they need, you can send an email to the Minister for Health, your local TDs and members of the Oireachtas Health Committee, highlighting your concerns to them. This initiative is a partnership between MS Ireland and Roche Products (Ireland) Ltd.
Read the first blog for MS and Me from Katie St. Lawrence (24). She shares her experience of what it means to have fatigue, how she deals with it and how, thanks to being strategic about rest, energy and listening to her body, life is as enjoyable as ever. I never knew when I was first diagnosed that fatigue would be one of my biggest challenges in my battle with multiple sclerosis. During the diagnosis process, I was always asked by the doctors and nurses how my energy levels/fatigue were. I never had any complaints. This changed a year after my first relapse. It was during the summer time when I started experiencing fatigue. I began to notice that the smallest of tasks would leave me feeling wrecked and needing to take a break. Jobs like preparing the dinner or cleaning my room (which never used to be an issue for me before) left me feeling like I had just completed a mini-marathon! I started to get jealous when I looked around and saw other people around me doing these tasks without any difficulties. I also felt angry with myself when I thought about all the times, pre-MS, when I sat around doing nothing. I could have been enjoying myself! Little did I know then that I would be suffering from what I could only describe as the Ultimate Tiredness x10 for basic tasks. Katie’s Fatigue = waking up after a full night’s sleep only to feel as if I’ve not had any sleep at all. Or being so tired that I can barely move and have to talk yourself into moving. Fatigue is when a hot shower can drain every ounce of whatever remaining energy out of your body. It leaves you feeling completely shattered and defeated. Like many people with MS, I have my good days and bad days when it comes to dealing with fatigue. Fatigue is with me all year round but is so much worse in the summer time in the higher temperatures. On my good days I can go most places or do most things without it affecting me too much- only a little bit fatigued. But on my bad days, I wake up feeling completely wrecked and basic tasks almost wipe me out. Since the first year, I have learned to deal with my fatigue. I’m more strategic now- if I have an event coming up I prepare by taking things easier in the days leading up to it. I have also learned to listen to my body more and if I feel as if I am over doing things, I take a rest or get an early night. While fatigue can be extremely difficult to deal with, I try not to let it rule my life. When I listen to my body, I can manage. Things are very different to pre-MS but despite the fatigue, by making small changes, listening to the changing needs of my body, the most important thing is I still get to enjoy myself.
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