MS Ireland
Informing, Supporting and Caring for the MS Community
22
Feb
Date/Time: 22 February 2019 - 12:30 to 13:30
Event Type: Living with MS Programme
Organiser: North East Region: Aoife Lambe
Region: North East
Venue:
The Crea Center,
Drumbaragh,
Kells,
Co. Meath
Brief Description Of Event:
Yoga Class for people with MS commences on 11th January for 6 weeks. Cost 25e.
Contact Details:
Aoife Lambe 086 4613369
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This week Niamh McCarron writes on the joys of rural living and how her life, and access to medical services, has changed since moving to Dublin city. Life with a long-term illness like MS is a balancing act. As time goes on, I’ve learned that I need to balance work with rest and for every ‘big night out’, there is a payback of weeks of early nights. In Ireland, there is also a balance between the services available in bigger towns and those available more rurally. Personally, I’ve experienced both city and country living since I was diagnosed with MS, so when thinking about this blog post I was able to reflect on my time in both locations. I am from Donegal, but I have spent most of my adult life living in Dublin. About a year into my diagnosis, and for the following four years, I was lucky enough to have an opportunity to work from home in Donegal. This period of time allowed me to get used to my MS, at a slower pace. Then, a few years ago, we made the move back to Dublin. Donegal will always be home for me, but I also love the buzz and convenience of the city. One thing we considered when moving back to the Capital was the impact it would have on my MS and the treatments I receive. My main concern was that going from working from home to being back into the busier world of commuting and office life would play havoc with my fatigue and result in a sensory overload. I mean, I had rolled out of bed at 8.30 am and worn tracksuit bottoms for four years! I was concerned that I wouldn’t be able to deal with Dublin and MS. We partly got around that by moving into a house six minutes from the office. My company know all about my MS, so we came up with plans to help me if I needed to adjust. Next, I had to think about the access to MS services I had in Donegal versus what I would have in Dublin. Currently, I have a neurology appointment approximately every nine to twelve months. Let’s face it; one or two appointments a year aren’t going to upset my schedule too much, regardless of where I am living. In Donegal, though, I had to travel to Sligo for appointments, a 2.5-hour trip each-way. This was fine when I was going to a scheduled appointment, but it was a stressful journey when I was having a relapse and needed to be admitted. Just for ‘normal’ illness, my nearest A & E department was an hour away. In Dublin, I can access the MS Clinic in St Vincent’s before work in the morning and be at my desk by 10 am. I also have a choice of hospitals I can get to pretty quickly if I needed to in an emergency. Of course, it is unrealistic to think that everyone across the country can have the same level of access to facilities. By its very nature, living rurally means that you can’t have everything on your doorstep. Rural living meant that I was too far away to travel to a lot of local MS Ireland meetings, but it also meant I could be at an empty beach within a few minutes – a ‘therapy’ of sorts that I can’t replicate while living in the city. Rural living can be isolating. One of the reasons I started blogging for the MS and Me blog was to connect with people who understood what I was dealing with. At the time, I didn’t know anyone with MS who lived close to me. Blogging, social media and joining online communities helped bring the big wide world into my wee house in the middle of nowhere. Those contacts and friends came with me when I moved and they are still with me today. We still keep in touch online only now I have more of a chance to actually meet with them for coffee. It’s lovely to have the ability, at short notice, to meet someone in town after work. There are many days though, I’d prefer to be sitting on my old back step chatting to the cows in the next field – I think this Town Mouse will always be a Country Mouse! If you would like to get in touch, contact @weeneevie (Twitter and Instagram) or https://www.facebook.com/weeneevie/
MS Ireland is a proud signatory of the new ‘Charter for Patient Involvement in Medicines Assessment & Reimbursement’ which is published today Wednesday, 20th February 2019. The development of this Charter for Patient Involvement is an important milestone for IPPOSI. As a patient-led platform, we have led multi-stakeholder discussions and identified consensus within the medicines assessment and reimbursement space over the past decade. This Charter, developed with a cross-section of the IPPOSI patient membership as well as the support of the Medical Research Charities Group (MRCG) and Rare Disease Ireland (RDI), provides a collective and holistic response to address the many patient concerns expressed about levels of transparency, accountability, quality and fairness in the Irish Health Technology Assessment (HTA) and post-HTA process. You can download the report here
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.
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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