MS Ireland
Informing, Supporting and Caring for the MS Community
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MS Ireland's conference talks streaming live on Saturday, 23rd September. Watch Live from 9.45am
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
This week Niamh McCarron describes what it is like when 'MS Fatigue' sneaks up and a different day might be lined up for her! I had great plans for today! Today could have been the day I changed the world. I was going to conquer my to-do list and have a good hair day. My MS had a different plan, however, and in the battle of good (me) versus evil (MS), MS won. I was hit by a wave of fatigue that meant instead of hopping out of bed to face my Saturday, I dragged myself through the motions of breakfast, showering and back to bed again. Fatigue is a common symptom of MS. Some of my friends with MS live with fatigue a lot, almost all the time. Others won’t have it at all for ages, and then get hit with it out of the blue. In my experience, it gradually builds up without me noticing. For me, it will often come on after a period of being very busy at work or not taking care of myself properly - those weeks when I rush around having spaghetti hoops for dinner while the vegetables in my fridge start to lose the will to live. I can get away with it for so long, before fatigue will remind me that I need to stop. Slow down. Take a breath. Fatigue is a hard symptom to describe to people. I mean, I can say that it is tiredness, but everyone gets tired. My friends with small kids, or who work long shifts at work, know all about being tired. Most days I feel tired myself. Fatigue is different. When it sneaks up on me, it’s like walking in wet sand, while wearing really soggy clothes that drag you down. My arms and legs get slow and stubborn, and moving quickly isn’t an option. My brain slows down, and concentration escapes me. The tiredness goes into my bones- every part of me needs to rest and to sleep. Fatigue robs me of my time. When I have made plans to do things, and I can’t physically get them done, it’s frustrating and upsetting. It robs me of my concentration; tasks that should come easily to me are foggy and harder to process. I push through as hard as I can while at work, to suffer the aftereffects when I get home that evening. Going to bed for a quick nap at 6pm can lead to sleeping through until the next morning. It robs me off my family; it’s not fun for my husband to have Sleeping Beauty snoring upstairs while he takes over all the household chores. Fatigue has also taught me to (try to) be patient and kind to myself. Fighting it too hard just makes it worse. It is better to give in sooner rather than later! So today, I had planned to go to Town. To have a nosey around the sales and see what was happening in the world. Instead I woke up tired, after a long night’s sleep and felt my entire body shout at me to stop. Slow down. Take a breath. Plans were quickly abandoned, and I spent the entire day in bed, sleeping and reading a bit and giving myself permission to just “be” rather than “do”. Tomorrow, I plan to get up, face the day and go for a stroll. MS might have a different day lined up for me. And that will be ok too!
Today, 13th September we celebrate one of our all-time favourite children’s authors and friend of the MS Readathon, the legendary man that is Roald Dahl. As we step into this magnificent world of childlike imagination and wonder we can’t help but notice that his books are still as fantastic today as they were when we were your age! Roald Dahl is a man that needs little introduction and if we were to tell you all of the reasons why we have chosen to celebrate his works over other authors we would be here a very long time! We are so looking forward to this week when we get to lose ourselves in this fantastical world where anything is possible. Isn’t that the point of reading? When you pick up any of Dahl’s books you know you’re about to be transported to a topsy-turvy world where the witty language is as inventive as the characters using it. One of our most treasured Dahl-isms is actually from the film Willy Wonka and the Chocolate Factory but originates in the timeless book, Charlie and the Chocolate Factory: Willy Wonka is talking about some of the things the children can taste in his lickable wallpaper room. He then says matter-of-factly, “The snozzberries taste like snozzberries.” Veruca Salt responds, “Snozzberries? Who ever heard of a snozzberry?” Wonka puts an end to this by simply stating, “We are the music-makers, and we are the makers of dreams.” It doesn’t matter one bit that we don’t know what a snozzberry is, now does it? The point is that you should never stop using your imagination. It can be whatever you want it to be! Dahl has created so many stories within so many books and each is as varied as the last. One of the things that makes a Roald Dahl story different from any other is his unique ability to take the fantastical and make it seem completely normal. The BFG being the perfect example – shortly into the book there is no doubt left and you begin to believe that there are Big Friendly Giants out there delivering good dreams to children! But of course, Dahl was also a poet and what a scrumptious collection of poems he left behind! If you haven’t read Revolting Rhymes we insist that you go to your local library and find it today! Each poem is based on a traditional fairytale but naturally Dahl wanted to put even more magic into the tales so he created his own endings to wow all of his little readers. Children’s literature owes a lot to Roald Dahl and we are so thankful he shared his wonderful imagination with us. Now go pick up one of his books, open your imagination and enter the lickswishy world of Roald Dahl. Open a wonderful world of adventure and imagination through reading for a great cause and sign up to the MS Readathon
Watch LIVE talks from our 'Living Well with MS' conference this Saturday, 23rd September in Sligo. Tune in from 9.45am.
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