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:
‘But you look so good’…. MS & Me blogger Niall McGahon shares his thoughts and reaction on hearing this compliment. “But you look so good….” For some, this expression can be one of the most frustrating things to hear when you have MS. For me, it is simply someone paying me a compliment and my immediate reply is “Thanks a million…” Personally, the most frustrating aspect of having MS - is having this progressive illness. No two days are the same nor do they have any predictability. This is where I have tried to take back control of my life and put a bit of manners on MS! Now this was by no means an instantaneous migration and did not happen overnight. It was and still is difficult to make such major lifestyle changes and I am continuously learning each and every day. Many times, of course it does get in the way, or rather my right leg gets in the way of my left leg. Suddenly the footpath and I are about to become very close friends! But like all things you learn to live with and give yourself the best possible chance of limiting the relapses through exercise, major dietary change, meditation and focusing on what I can do and not on what I may or may not be able to do in the future. I follow the OMS program for all of this. The great sports phycologist, Dr Bob Rotella has a simple concept used for golf of “staying in the present”. These golfers play their next shot until they run out of holes and then add up their score. I have taken this from my golf and tried to apply it to my illness, simply take each day as it comes and deal with that day. The rest of the days are, for the most part outside of my control. Since being diagnosed with MS in 2014 and having many experiences since, I have become acutely aware of how well I am in the grand scheme of human health. I have been in hospital for various treatments and have seen people who have much harder crosses to bear than me. So as a result, I am trying to make myself more aware of when someone is paying me a compliment. I have no idea what that person is going through, yet they have taken the time to think about me and what I am going through by paying me a compliment. The correct thing to do is simply say thank you. If you can add to peoples’ knowledge of MS along the way through conversation, then brilliant. The greater the understanding of what a person with MS goes through daily, the better. You may be in pain, you may be heavily fatigued, and you may not be in a very good emotional place. What I have learnt over the last 4 years is that the person saying that you look good could be in the very same place but for a totally different reason, so saying thank you is sometimes best for all.
New treatment option for relapsing remitting MS The National Centre for Pharmacoeconomics in Ireland (NCPE) announces positive recommendation for reimbursement for MAVENCLAD (Cladribine tablets). MS Ireland believes people with MS should have access to all and any appropriate and licensed treatments that would improve or assist in the management of their condition. The MS community is very much looking forward to having access to this treatment option. Read MS Ireland’s briefing document on the process of licensing and reimbursement of new medications.
‘Don’t let MS stop you from finding your happily ever after’… This week Ciara O Meara reflects on dating and disclosing her MS when she finally found the one! Dating is a pure and utter minefield! Your preparation for the field is diligent and precise. You approach the field with care and caution, as you have no idea where potential disasters lie. The field itself is exciting; it’s unpredictable and it’s nerve wrecking. And your exit from the field can be a calamity or pure serendipity. MS just drops a few unexpected mines into the field of mayhem! MS never impacted on my dating life and it certainly didn’t do anything to lessen the amount of frogs that reared their heads along the way! When I was diagnosed I was in a relationship, but that ship was already sinking long before MS was mentioned. It was sinking at such a rapid rate that I never told him of my diagnosis- what was the point? It wasn’t going to make any difference to our relationship and I didn’t want anyone hanging around out of guilt or fear. Plus, I was excited at the thought of single Ciara returning to the minefield of dating! I didn’t have the Tinder experience when I was single. It was late bars, nightclubs or a friend of a friend. I didn’t have the ‘liathróidí’ to approach anyone without an alcoholic beverage in hand. Give me some Pinto Grigio and I had balls of steel. There were once off kisses, numbers swapped, a regretful one-night stand, a date, maybe two, even three but MS was never mentioned and it never entered my mind. I had no visible symptoms of my MS and there was no indication that anything was wrong. I was young, free and single and playing the field and MS had no reason to be involved. Like I said, MS never impacted on my dating life, not until I fell in love that is. Ladies night out in a dodgy nightclub at home at Christmas- it was only meant to be one of those random drunken kisses. Numbers were exchanged, dates arranged and by month four we were ‘Facebook Official’ and I was falling and falling hard. I had told Dave I loved him long before MS was mentioned. Maybe it was fear, maybe worry, pity or embarrassment that stopped me every time from telling him. I thought if I told him that he would feel morally obliged to stay in the situation rather than wanting to be in a relationship. There were only so many excuses I could make for the perfectly circular bruises on my tummy and thighs from the Rebif. I wanted this relationship to develop and to do that I had to be honest about the uncertainty and unpredictability that this disease brings with it. When I told him he stared blankly for a few minutes, my heart rate increasing by the second. He looked at me, held my hand and said ‘Ciara, I fell in love with you and now that I know you have MS, I will love you even more’. I had made MS out to be bigger than what we had when in fact our journey together with MS would make us stronger. Six years on and a house together is testament to that. He’s there on the bad days, he’s there on the good days and he’s there to support me in everything I do. Everyone’s someone is waiting for them. Don’t ever let MS stop you from finding your happily ever after. Brace the minefield with open arms and kiss all the frogs that hop in your way- you never know which one is the right one!
MS Ireland will host the annual National MS Conference on Saturday, 22nd September in the Radisson Hotel, Athlone, Westmeath. We are also hosting a gala dinner on Friday evening (21st September) during which the annual awards ceremony will be held. Highlights on the day - confirmed speakers: Professor Gavin Giovanonni, Professor of Neurology Centre: Centre for Neuroscience and Trauma. Research Groups: Neuroimmunology. Barts and The London School of Medicine and Dentistry. Dr. Jens Bansi, Exercise Scientist; PhD., Rehabilitationszentrum Valens, Switzerland. Dr. Sabina Brennan, Trinity Brain Health and ADAPT, TCD. Workshops Irish Hospice Foundation, Planning for the future. Genomics Ireland, Dr. Kate O’Brien identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression. How to book your place! Registration from 9am. Meeting starts 9.45am - 3pm followed by MS Ireland Annual General Meeting (AGM) will also take place on the day. Cost of Day €20 (including lunch). Get in touch For further details contact western@ms-society.ie or 091 768630 National Conference - Save the Date originally published 9th February 2018
This week Robert Joyce discusses the good days and the bad days. Chronic illness invades every part of our lives and it can be so easy to fall into a trap of grieving for what used to be. Snowflake. I never thought that I would class myself as part of this new category. It is a term that is used to describe the new generation, signifying that everyone is different. Unique. Special. Beautiful. Multiple Sclerosis has so many variations of how it affects the people that have it; MS can definitely be called a snowflake disease. In the last four years, my health has changed. My Multiple Sclerosis raised its head, announcing its return by adding extra weight to my right leg and placing gloves on my hands that contain thousands of pins and needles. It woke up because of a minor car accident that shook this beast from its slumber. Accompanied by a headache that since then has never abated. Chronic illness can and does, invade every part of your life. Work suffers, testing your relations with loved ones and your mental state can transform from happy to maudlin in an instant. Your mind brings up memories of days when you could walk for hours, or become immersed in learning something new. Now, these are not possible. Living with longing for the past only leads to despair. I have travelled this journey and understand how easy it is to fall into this cauldron of lost abilities. My toe has been scalded many times as I started to slide into this boiling broth. Now I know how this feels and have found a way of lifting myself away from this bubbling pot. I’ve placed my damaged body back on a path with the sun warming my back by focusing on my abilities, on the friendships made while walking this road. Focusing on the opportunities that I have, the abilities that I learned, and newfound friendships, has created vital, renewing times for me. Lost mobility has put me in front of my laptop and now I write. Seeing that the creativity that I need to feel fulfilled can be met by using these keys, I now share my stories to an audience that spans the world. Singapore, Peru, USA and even Cork are all places that my words have been read. My eyes once again sparkle with excitement as I wonder what new post I shall write. I share my story with the world and I know it is listening. In this uncertain future that I have as a result of my medical condition, I know that those dark, cauldron days will return. However, those days are a stark contrast to the days filled with happiness and gratitude for the new abilities that I have learned. I am secure in my belief that "the dark days make the bright days brighter". Discover more from Robert Joyce on https://a30minutelife.com/
Do you dare to take on our fire walk for Kiss Goodbye to MS on September 15th in Dublin?
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16 August 2018: Yoga classes to help improve health and wellbeing. Ongoing throughout 2018
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