Balance problems are common for people with MS, but the causes and effects can vary from person to person and from one day to the next. Problems can include vertigo – a feeling of dizziness where the world appears to be spinning, though not everyone experiences this. For some people, balance problems mean they are wobbly on their feet from time to time, or they find they need to move with more care than before to avoid losing balance.
Finding the best way to manage any balance problems will be an individual approach – there is no single solution for everyone. Many people do find effective ways to improve their balance and feel more confident getting around.
Keeping the body balanced involves many messages going to and from the brain. Even standing still, the body is constantly adjusting to the environment and making tiny changes. When MS causes damage to the brain or spinal cord, this can distort messages and cause balance problems. However, there can be other causes, quite separate from MS, and balance problems are common in the general population, too.
A whole range of health and social-care professionals can help, including physiotherapists, occupational therapists, rehabilitation specialists, MS specialist nurses, and ear, nose and throat (ENT) specialists.
I think I have an aversion to the World Cup. In July 2010 I ended up in hospital, and was subsequently diagnosed, with MS. Roll on 4 years, and I was back. I was in a different hospital, and the relapse was totally different than my previous one, but the drill was the same. In the 4 years after diagnosis, I didn’t have any full-on relapses. I have symptoms all the time, I often feel like death warmed up, and there are days I can barely put one foot in front of the other. But, I’ve been able to live with it and, for the most part, get on with life regardless. Winter time is my friend. When its cooler and dark, and I can stay indoors wrapped up and in front of the fire. I usually don’t feel too bad during winter. The worst time of year for me is when spring turns into summer. That time of year when the rest of the country is hoping for heat and sunshine, and to lie out in parks during their lunch, you can usually find me skulking indoors. This year I started feeling “off” in April. It usually takes me a few days to cop on to the fact that I don’t feel well, but I can remember feeling the onslaught of exhaustion at Easter. My leg was annoying me; my arms were heavy and awkward. I was off-form in general. I was still able to do my normal day-to-day stuff, but it was getting slower and laborious. I wasn’t overly worried, telling myself and others “well, this happens every year” and ploughed on. Six weeks of feeling unwell later, in the last week of May, a full-on relapse hit me smack in the face. On the Wednesday evening my eyes were unusually sensitive to light. After work we’d headed off to do our grocery shopping and the lights in the shop were too bright for me. I was walking around with sunglasses on, like an eejit, squinting and making faces at everything. It’s grand, I thought, I’ve been busy at work, the pc has left my eyes tired. Thursday morning I woke up feeling ok. My eyes were a bit sore, but my house is dark and working from home means I can keep the blinds down on a sunny day. I worked all day, feeling a bit uneasy, but nothing I could put my finger on. After work, my husband came in to the room, and when I turned my head to look at him, he was blurry. Isn’t that funny, I chuckled, I can see you in soft focus. The blurriness stayed all evening, and I headed off to bed early. By the Friday morning, I had complete double vision in my right eye. I convinced myself it was tiredness that I needed a BIG cup of coffee to wake up. I sent the hubby off to work as normal, and set myself up at the pc to start checking my emails. Two BIG cups of coffee later, and my eyes were still banjaxed. I was sitting at the pc, typing with one eye closed. Not very productive or sensible. I have been told I am stubborn when it comes to my MS, but on Friday 30th May, I gave in. I called the GP, got a referral letter, and packed my bag to go to Sligo. On the Friday of a Bank Holiday weekend. Hey, if you’re going to do it, do it right! I’d never had Optical Neuritis before, it was a new symptom for me to deal with. It’s a pretty hard one to ignore too. It’s very unnerving not being able to see if something is in front of you. The journey to Sligo was awful. The double vision meant that instead of just seeing cars on the opposite side of the road, passing us, I could also see them coming towards our car at an angle. It also made me nauseous, which isn’t pleasant on a 2.5 hour drive. I got admitted into hospital for 5 days, I had to have an IV steroid. Once a day, I’d get hooked up to a drip for about half an hour. The rest of the time I slept a lot. I was exhausted from the relapse and from the heavy dosage of medication. After feeling off for two months, it hit me like a ton of bricks. I needed to rest and recover, and as I couldn’t escape the hospital, I took advantage of the time away from normality and rested up. When I got home after the 5 days, I wasn’t back to myself at all. In fact, I felt worse. My eyes took another week to clear up, and I was still on heavy medication. It’s only now that my family members have started commenting on how much better I look. I can honestly say I didn’t realise how unwell I was until I started to get better. I sometimes think I don’t have MS, that I’ve imagined it all and that I am spoofing everyone. The relapse made me realise that it’s not all in my head. I had a follow up appointment with my neurologist last week, who said other patients have made similar comments. I guess when we’re all functioning as normal we don’t realise how hard our bodies are working to fight this illness. And sometimes we have to give in. But, I am a stubborn article, who doesn’t give in easily. So, yeah, I blame the World Cup. Niamh
Join longtime MS Ireland supporter Deric Hartigan as he leaves the 3e studios to MC a charity night for us in Balbriggan. Joining him will be a set from singer Joe McCaul and band Proper Order in what's sure to be a night for your diaries! Where: Bracken Court Hotel, Balbriggan Date: 27th September Time: 8pm onwards Tickets are available from the event organiser Olivia: 086 804 9821 Tickets will also be available from several shops in Balbriggan so kepe an eye out!
Submissions now being accepted for 2015 Calendar Following on from last year's incredibly successful competition where we discovered that there are hundreds of talented photographers across the country, we're delighted to announce that we are on the hunt for images again! We’re looking for images from your local community which showcase our beautiful country at its best. Get snapping around your area and enter our competition today! Winning entrants will see their image in the following places, in addition to the calendar: Our MS news magazine which is sent to 5,000 members, clinics and health professionals around the country A special edition of our eNews, sent to 5,500 people Throughout our social media profiles – Facebook, Twitter and YouTube Images will be framed and displayed in our MS Care Centre in Dublin which welcomes hundreds of residents, family members, funders and supporters each year Individual images will be available for purchase in our online shop. See full details and enter here. Good luck!
Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of "When I was diagnosed" came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me: Dear Me, You were semi-prepared for today. You prepared for the worst while hoping for the best, and (as you think) 'as usual' it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what's just happened. The outside world can wait. Everything is going to be alright. You are going to regain 20/20 vision, so that lovely image in your mind of yourself with secretary glasses will have to wait for a while. This is a scary time, allow yourself to feel the way you feel - there is no right or wrong way. Let your family know how you are feeling. They just got the news too… they are all feeling for you and wishing that it was them and not you. But it is you, and you are the one who is glad that it's you and not one of them. They are always going to be there to help out. They will do their best to support you and make sure that life goes on as normal. Share with them; let them know that you are allowing them on this journey with you and that you won't hide any symptoms or feelings from them. They will worry twice as much if they think they have to guess how you might be feeling. Just be open and honest and then they know the situation and they can help you more effectively. Keep going with college, there are only a couple of months left. You'll have to fight for it because you will be asked to defer, but keep going, you'll do it, don't give in. Do what’s best for you and not what's easiest for someone else. Don't pre-empt what 'could' happen. So far so good, nothing you were afraid of has happened to this point. Remember that MS could have no affect on you for quite some time. Take each day as it comes and try not to worry so much. You will look back and think it was ridiculous to worry the way you did, and you'll feel like the diagnosis was small in comparison to the emotional turmoil you put yourself through by worrying about something that might never happen. Forget the idea in your mind of what you think MS is. It's not something that is associated with older people. I know you are scared at looking at the possibilities of the future, but you'll change your mind on this. You will read and research tirelessly and you will begin to love it. Information is power and you will crave it. Get in touch with the MS Society. Engage with the community, they have all been where you are now. Don't be afraid to look at information, you will benefit from reading it and the fear that you have now will turn into knowledge. Instead of feeling like MS is unpredictable you will feel that knowing the possibilities puts you back in control. Instead of focusing on the negative elements of this, look for the good in it. In fact take that as general life advice and not just in relation to MS. It will make you a lot happier! Trust yourself and trust your judgement. No doctor has experienced things the way you have. Nobody has experienced your experience, so you are the expert here. If you disagree or don't understand something fully, ask, question, interact with your doctor/nurse. They can't answer questions you don't ask. Remember, that you are in charge here, you are taking advice, but your decisions are your own and you need to be the one to make them. You can't expect someone else to make the decisions ahead of you, even though you would like to pass on that responsibility, you really do need to own it. It will make you stronger. Know that medications are there but it doesn't mean that you have to take them. If you don't want to, discuss that with your doctor. Tell them how you are feeling about it. You don't have to feel in a rush to make a decision on a treatment plan, that all work long-term so don't feel under any pressure to push yourself into a decision. Take your time, relax and breathe. Aoife
Biogen Idec has provided this update about Fampyra, following changes to its availability in July. "Now that Fampyra is commercially available, the free of charge supply must come to an end so other patients can access this product. Hence, the programme ceased enrolling new patients in January 2013 and has now ended for all patients as of 1st July 2014. Despite this, between the time the decision was reached and its implementation, Biogen Idec has continued to supply Fampyra in Ireland via the Named Patient Supply (NPS) route sometime to allow sufficient time for patients wishing to continue treatment to be notified in order for them to make alternative funding arrangements and to allow them time to discuss this situation with their neurologist. Due to patient and physician demand for this product, Biogen Idec made the decision to make the drug commercially available so patients outside the NPS programme would have access to this product. Biogen Idec applied to the Irish Department of Health and HSE for reimbursement of Fampyra. However, in early 2013, Biogen Idec received notification that the drug would not be reimbursed. Given that Biogen is committed to make this drug available to Irish patients, Biogen Idec is continuing to work with the HSE to ensure that eligible patients with MS in Ireland can receive Fampyra. Recently (July 2014) Biogen Idec made a new pricing submission to the HSE. which is not possible to comment further on since discussions with HSE are still taking place. While it is now fully available, any patients wishing to receive treatment will be required to either make alternative funding arrangements or to self-fund their treatment." Further reading MS Ireland Media Centre Fampyra Information Sheet
09:00 - 18:00
12:00 - 13:00
10:00 - 12:30
South Dublin A...
18:30 - 19:00
18:30 - 20:00
21:00 - 01:00
09:00 - 13:00
15:00 - 17:30
10:00 - 16:00
10:00 - 12:30