MS Ireland
Informing, Supporting and Caring for the MS Community
This week Niamh McCarron recaps on the 2017 annual MS conference in Sligo. On Saturday 23rd of September, MS Ireland held their annual conference in the Radisson Blu Hotel in Sligo. The theme of the day was “Quality of Life and its Relationship with MS”, and attendees were treated to a range of topics relating to living well with MS. I reckon a lot of us put our own needs way down to the bottom of the priority list - after kids, and housework, and jobs, there is little time left over. It can feel indulgent and superficial, but it’s so important to take a breather when we can. I am so guilty of this myself, there is always something to do, but I headed off to the conference, ready to learn more. The conference was also live streamed, making the talks accessible to people far and wide. First up... Dr Orla Gray, Consultant Neurologist, Ulster Hospital, “MS Treatments & Management in Improving Quality of Life” Dr Gray spoke about what MS is, how it manifests and how its management has changed. She explained how early diagnosis and treatment can really help us to keep well for longer. I love listening to talks by neurologists, and seeing the science behind MS. I don’t understand much of it, but I love hearing the perspectives of people who dedicate their careers to research and treatments. Dr. Sinead Hynes, Occupational Therapy Dept, NUIG “Cognition and MS” I was very interested in hearing Sinead explain the importance of our cognitive function and MS. MS can impact our ability to remember, to follow a conversation, to learn new things. Many of my MS friends have had the dreaded “Cog Fog” - where our brains just don’t seem to connect. Sometimes it’s hard to remember the correct word, or how to do a task. Sinead gave us great tips like using apps to record dates and appointments, and being aware and mindful of how we are feeling. Taking time early on to have a “Brain Break”, can prevent total cognitive fatigue later. Dr. Deirdre Corby, DCU School of Nursing, “Evidence Supporting Assistive Technology” Deirdre spoke about how assistive technology can impact on someone’s quality of life, helping them to maintain their independence. Her presentation made me more aware of the assistive technology available, and how it can help people with MS. For example, I didn’t realise assistive technology doesn’t have to be electronic or computerised, it can be something simple like a gripper on your keys. Small things, that make a big difference! William Ryan, Continence Advisor, “Bladder Management” William gave a great talk on how the bladder works. Lots of people with MS have bladder problems, like the need to go to the bathroom frequently, or unexpectedly. Other people don’t have the ability to fully empty their bladder, which can lead to infections. Some people have both! William was so positive, in discussing what can be an isolating, embarrassing and uncomfortable issue. Attendees also kindly shared their stories about learning how to self-catheterise, which has given them back their independence. Mary Anada Shakti, “Laughter Yoga” Fellow blogger Joan went to Mary’s Laughter Yoga group, and had a ball! When I spoke to her and other attendees later, they all said how much they enjoyed it. Mary got the group to sit in a circle to do silly things. They did a lot of laughing and interacted with each other physically. Joan reported sore cheeks from laughing and that she went in feeling a 4 and came out feeling a 10! Dympna McNamee, Social Worker, “Strategies to Manage Change” After lunch, all the groups came together again to listen to Dympna’s talk on mindfulness and meditation. I admit that I find it hard to switch off, and at home I definitely don’t take time to sit quietly and relax. However, Dympna’s advice on how to be mindful included tips on doing small bits throughout the day, which didn’t sound too daunting! I haven’t done it yet… but I will… I promise! I went to the conference on Saturday hoping to pick up some tips, but the reality was so much more. I came away feeling determined to look after myself better, and that it is OK to put day-to-day chores aside and to rest and refresh ourselves. I’ve tried to summarise the content from each talk, but I’d really encourage you to spend some time watching the presentations. The videos from the conference are available here
A big thank you to everyone who has completed our research priorities survey so far! It is hoped that as and when funding is available for research in the future, the results of this survey will help guide us as to how best to utilize them so that we are funding research that is most in line with the views and needs of the MS community here in Ireland. The survey will also help us to identify and prioritise potential new research partnerships and collaborations, both nationally and internationally, and guide us as to what type of content people would most like to see disseminated in future research eZines. If you haven’t yet completed the survey, it is not too late – the survey will remain open until Friday 27th October. After that, a summary of the results will be presented to a group of Irish MS researchers at the end of November. We will then produce a full detailed report of the findings.
This week Joan Jordan talks about foot-drop and the implications it has for her daily life. Talk about issues with your doctor, seek referrals or book an appointment if this is something that is affecting you. Like many of my M.S symptoms, foot-drop crept up on me over time. The best way I can describe it is that the process of lifting my foot sufficient height to walk effortlessly doesn’t happen. My foot catches on low obstacles (like carpet pile) and I need to make a conscious action to lift my weak foot when walking. Stairs are the hardest because I need to raise my foot the correct distance so I don’t miss and trip. Things get worse as the day goes on and flat, light shoes help. I have tried a device under the supervision of my physiotherapist and the electric signal really did make my foot move appropriately (albeit involuntarily!). I think I would get used to the sensation over time but for now- I am minimising the amount of walking I do and practising the exercises I have learned in yoga class to keep my foot mobile. I’m not a physio- so my best advice if you are experiencing foot-drop is to contact one and make an appointment. I would recommend you ask around people in your area with similar symptoms to see who they favour. Do tell your neurologist when you visit them to get their advice too. I occasionally get called out by people who don’t know I have Multiple Sclerosis for being lazy. Explaining my illness to them generally works. I don’t go into too much detail- I just tell them that I find walking long distances difficult because my right foot drops when I attempt to lift it. Generally people understand and are aware of my situation in the future. When walking is required- I always ask in advance if the “5-minute stroll” really is an accurate estimation. I know how far I can walk and trying to keep up with a gang of energetic power-walkers when I am past my limit is not good. I always calculate my route when travelling to avoid unnecessary steps and am realistic with friends when we plan events involving much walking. It’s tough sometimes when my kids want me to join in with activities requiring a lot of footsteps. We usually find a compromise and it doesn’t get to me so much anymore. Do you experience foot drop and how do you manage it? Looking forward to hearing from you!
We are live streaming talks from our 'Living Well with MS' Conference in Sligo this Saturday, September 23rd. You can join us on the day from anywhere around the world... We are delighted to welcome our guest speakers: Dr. Orla Gray, Neurologist, Queens Hospital, Belfast @ 10am Dr. Deirdre Corby, DCU School of Nursing @ 11am Dr. Sinead Hynes, OT, NUIG @ 12.15pm Dympna McNamee, Social Worker @ 2.30pm Tune in on Saturday, 23rd September from 9.45am. Click the link below and join the conversation. #MSLiving https://youtu.be/Bj8_Ug7ftMM
Exploring Social Isolation, Loneliness, and Social Asymmetry as predictors of Complex Post-Traumatic Stress Disorder in Multiple Sclerosis Gary Tracy, a PhD student from NUI Maynooth, is conducting a study looking at how people act in response to receiving a diagnosis of a chronic medical illness (i.e., Multiple Sclerosis). Aim of study This study is interested in evaluating if posttraumatic stress is common among individuals who have been diagnosed with a chronic illness. Additionally, this study will consider how factors such as loneliness and/or social factors such as social isolation can influence how likely a person is to experience symptoms of posttraumatic stress following a diagnosis of a chronic illness. What do I have to do? Participants would be required, on one occasion, to complete a questionnaire booklet containing numerous psychological measures. The duration of completing the questionnaire booklet is approximately 20 to 30 minutes. To participate, please follow the following link Further informaton Information is available in the Participant Information Leaflet. If you require further information regarding any aspect of the proposed study now or at any time in the future, please contact the researcher Gary Treacy on 087-6511659
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 October 2017 and find out for yourself!
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