Neurology IE by Mediaplanet UK&IE

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Managing chronic migraines with fast-acting treatments. P05

Our ageing population needs more funding for neurology. P02

Why you must tell your GP if you experience an MS relapse. P04

Neurological Conditions

Michelle’s MS experience “Don’t think this is the end of your life, it’s the beginning of your new life”

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Over 13,000 people in Ireland acquire a brain injury every year. Support is “patchy at best”.

8,500 people suffer a stroke in Ireland every year. Your pulse can be an early warning sign.

Top tips from the Migraine Association of Ireland for handling your migraine.

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It’s time to give neurology the investment it deserves Neurology needs to be funded properly if Ireland is to realise its vast potential in this area of medicine says Magdalen Rogers, Executive Director, Neurological Alliance of Ireland. In Ireland, the ﬁeld of neurology is at a critical juncture. On the plus side, we lead the way in neurological research. For example, FutureNeuro, launched in September, is a world class research centre supported by Science Foundation Ireland, focusing on chronic and rare neurological diseases. Its location makes perfect sense, too, because Ireland is uniquely placed to be a European leader in the area of brain research, thanks to our high calibre of internationally recognised clinicians and scientists, our small size and our highly networked population. We are also a leader in health innovation. It was Irish clinicians who designed, developed and implemented an electronic patient record (EPR) for epilepsy patients — technology that is now being used to advance Follow us

e-health, genomic sequencing and data analytics. Neurology also has some of the most innovative patient organisations in Ireland, informing, driving and supporting research, designing self-management programmes and assistive technologies, and designing and delivering services in response to patients’ needs.

Challenges facing Irish neurology Frustratingly, however, neurology faces immense challenges, too. As a clinical service, it is creaking at the seams with staffing at critical levels: we have one of the lowest numbers of consultant neurologists and multi-disciplinary specialists in Europe. Our ongoing A&E crisis means that patients are often not admitted to neurology units because beds are

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Magdalen Rogers Executive Director, Neurological Alliance of Ireland

simply unavailable; and those wonderful patient organisations are increasingly facing dramatic cuts and an alarming lack of understanding about the vital services they provide. Then there is another worrying issue: giving patients speedy access to diagnostics. Take MRI scans, which are necessary to diagnose many neurological conditions. The demand for this service — and its lack of expansion in the public health system over the years — means that waiting times are getting longer and longer.

Dealing with increased demand The fact is that neurology is facing a huge increase in demand, probably more than any other discipline in Irish healthcare. Perhaps this @MediaplanetIE

shouldn’t be a surprise. We have an ageing population, after all, with increased numbers of people needing treatment for conditions such as Parkinson’s disease, stroke and dementia, which is putting an immense strain on the system. And when you have a service where demand is growing but investment is static, something has got to give. The key, of course, is funding. Incredibly, this area of medicine has suffered from a historic lack of investment — but that must change – now – if neurology is to realise its vast potential while being properly equipped to deal with current and future need. What this particular discipline requires is sustained investment over a long period of time. Our people demand it and deserve it. And we, as a country, are going to need it.

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Support is crucial for successful neuro-rehabilitation In the blink of an eye a person can go from living a full and independent life to living with an acquired brain injury.

Acquired Brain Injury (ABI) occurs in traumatic, often tragic circumstances, which leave people with life changing injuries and longterm effects. With appropriate support many can go on to live independent, full lives but unfortunately, access to appropriate support and rehabilitation is by no means guaranteed. More than 13,000 people acquire a brain injury in Ireland every year, which has an enormous impact on their lives and the lives of their loved ones. In Ireland, services and supports for people with brain injury are patchy at best. Initially, most people will spend time in hospital but it is often when they leave acute care that the full extent of their new challenges becomes apparent. Some people are lucky. They live in areas where specialist support – mostly

delivered by the voluntary sector – is available and is effectively signposted towards them. But it is often all about luck. For many, the pathway is by no means clear and many people can get lost in the system, losing valuable rehabilitation time. Access to a range of rehabilitation services, where and when a person needs them, is crucial. Sadly, progress towards this has been slow. Rehab supports the Neurological Alliance of Ireland’s We Need Our Heads Examined campaign, which is calling for the substantial improvement of community neuro-rehabilitation services throughout Ireland. We have seen ﬁrst-hand, through our own dedicated brain injury services, just how much such targeted services can greatly enhance people’s lives and help those who have lost everything. With the right support, they can get back to living their lives as before. The services required are those that aim to deliver an holistic pathway

Mo Flynn Rehab Group CEO

of rehabilitation and support for people as early as possible in their diagnosis. Services focus on enabling people to rebuild their lives in their communities by supporting them to regain their independence, access education, training and employment, and to re-engage with family and relationships. However, the objective must be to reach people early in their recovery to minimise the effects

of their brain injury and maximise their future independence. Information is king. For most people, understanding the impact of a brain injury on their cognitive or social ability is half the battle; sadly many people don’t receive the service they need. The full extent of the emotional, psychological and intellectual toll of a brain injury may take time to emerge and people often struggle to come to terms with a much changed reality. Charities work hard to bridge the gap. Organisations like Rehab, Headway and ABI Ireland are doing their best but, unfortunately, people often get to the support that does exist by accident or because they have a family member who can support them to do so. In a perfect world, they should be supported to make the transition from acute to community-based support through a consistently delivered case management service. This would mean a dedicated person would guide the individual and

their family towards greater independence throughout their lives and as their needs change. The trouble is that, without these kind of dedicated, specialist supports, people are losing time and opportunity. They are being placed in inappropriate settings - there are many examples of young people with brain injuries being placed in nursing homes. Investment in local, targeted rehabilitation services to help people with acquired brain injury rebuild their lives is now overdue. With appropriate support many could go back to their lives, working, learning and living among their families. This must be Ireland’s priority.

Rehab currently supports over 1,000 people with neurological conditions, including acquired brain injury, through a range of services delivered across Ireland, England and Scotland. Our services aim to help the person in all areas of their lives.

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Why it’s crucial to report MS relapses to your MS clinic/GP People with MS who experience a relapse should tell their neurologist, MS nurse or GP as it’s a sign that underlying inﬂammation in the nervous system is not fully under control. By Tony Greenway

round 9,000 people in Ireland have Multiple Sclerosis (MS), a progressive neurological condition of the central nervous system causing, among other symptoms, tremors, fatigue, visual problems and limb weakness. Those with relapsing forms of MS will experience both relapses (exacerbations) and remissions (or recovery/stability). During relapses, new symptoms may occur and last for more than 24 hours. A change in previous or existing symptoms may not be a relapse and therefore a relapse isn’t always easy to recognise. “For instance, if a

person with MS contracts a urinary tract infection or even a cold, they may transiently experience a worsening of their neurological symptoms,” says Professor Christopher McGuigan, Consultant Neurologist at St. Vincent’s University Hospital in Dublin. “But that is not a relapse. The strict deﬁnition of a relapse is when new symptoms appear, caused by new or active inﬂammation of the nervous system.”

What can happen during and after relapse? The symptoms of a relapse vary depending on the part of the nervous system affected. If the optic nerve is involved, there may be a

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Professor Christopher McGuigan Consultant Neurologist

persistent blurring or loss of vision in one eye for a few days to a few weeks. If the spinal cord is involved, weakness or sensory change in the lower limbs may occur for a few weeks. By their very nature, relapses are unpredictable and can flare at any time. Yet, the vast majority of people who experience a relapse will recover over a period of days to weeks; and those who have been recently diagnosed in particular may experience a complete reversal of symptoms. “However, some relapses may leave behind residual symptoms,” says Professor McGuigan. “So a person may not

completely return to their pre-relapse baseline.”

Why you must report a relapse immediately If you have MS and experience a relapse, you should tell your GP, MS nurse specialist or neurologist promptly. Not all relapses require immediate treatment, for instance with corticosteroids, as they will recover with or without steroids but they indicate to your neurologist the need for a longer term change in treatment plan and the need for disease-modifying treatments. “A relapse is a red ﬂag that the underlying inﬂammation in the nervous system is not fully

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New treatment could end chronic migraine The misery of migraine is something one in 10 of us will have experienced ﬁrst-hand, but new treatments may help chronic sufferers stave off attacks. By Victoria Briggs

reventative migraine medication that tackles the underlying causes of the condition looks set to revolution treatment for chron-

under control,” says Professor McGuigan. “Numerous disease modifying drugs are now available and, since their introduction, we are seeing fewer clinical relapses.” Those who relapse while established on disease-modifying treatment may need to be given a more efficacious drug. Inﬂammation can also appear and disappear in the nervous system without causing symptoms, which is known as silent activity and only detected with an MRI scan. Ideally, therefore, those with relapsing forms of MS should have an MRI scan once a year. “Longer term silent activity still needs to be controlled in order to treat MS adequately,” says Professor McGuigan “so it should prompt the same management changes as a clinical relapse.”

ic sufferers. “Many of those with migraine are able to manage their condition with over-thecounter medication,’ says Dr Eddie O’Sullivan who heads the Migraine Clinic at Cork University Hospital. “Others will need triptans – medicines used to treat acute attacks that relieve pain within hours.” For a smaller subgroup, the severity of symptoms is exacerbated by the frequency of attacks. While a typical sufferer might expect up to two migraines a month, chronic sufferers will experience around 15 attack days within the same period. The impact of chronic migraine is staggering. The World Health Organization classiﬁes the extreme form of the condition as more disabling than blindness or rheumatoid arthritis, while the Migraine Association of Ireland estimates the cost of migraine to the economy to be in the region of €252 million a year. Migraine symptoms include what O’Sullivan describes as “a throbbing or pounding headache that rates highly on the pain scale.” Frequently one-sided,

Dr Edward O’Sullivan Clinical Director Headache / Migraine Clinic Department of Neurology, Cork University Hospital

the pain is often accompanied by vomiting and a sensitivity to light and noise. Around 20 per cent of sufferers also experience ‘aura’, which includes visual disturbances, or tingling and numbness, preceding the onset of pain. “During an attack, most sufferers will need to lie down in a quiet room to alleviate their symptoms. Functioning becomes difficult,” says O’Sullivan. “They effectively shut down.” Existing preventative treatments can reduce the frequency of attacks by 50 per cent, although many chronic sufferers

aren’t accessing their benefits. O’Sullivan explains: “All treatments being used for prophylaxis [preventative] treatments are primarily used to treat other conditions such as anti-depressants, anti-convulsants and beta-blockers. The side-effects of those drugs means they can be hard to tolerate, leaving patients reluctant to take them on a daily basis.”With the development of new preventative treatments, all that looks about to change. The new, fast-acting treatments (called CGRP receptor antagonists) are the first to target underlying causes of migraine, according to O’Sullivan. They also come with fewer side effects and, because they’re administered in a single-shot injection, they’re popular with patients. “Clinical tests on new preventative therapies have proved very effective, leading to a significant reduction in headache days per month,” says O’Sullivan, who describes the new treatments as ‘transformational’. “They will usher in a new era of migraine management,” he says.

Read more on living with migraine at migraine.ie

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TV3’s Anna Daly and TV presenter Brendan Courtney are encouraging adults from the age of 40 to have a blood pressure check this September #StrikeBeforeStroke

Michelle Hanley MS Patient

Michelle’s MS story Michelle Hanley, was diagnosed with Multiple Sclerosis on the 14th of February 2015, before her 25th birthday. She had just returned to education, training as a hairdresser. Michelle has two children, Abbey and Alex.

“My GP said four words that changed my life forever, ‘Michelle, it’s Multiple Sclerosis’. I remember him trying to explain the diagnosis to me in simple terms. At that point I had no understanding of the diagnosis and worry set in, what about my kids? Will I be able to look after them? Will I be in a wheelchair?” Some weeks later Michelle woke with numbness in the entire left side of her body. She spent one week in hospital under the neurology team and with the support of an MS Nurse. Through the weeks that passed afterwards she slowly began to recover and life returned to normal. Two difficult years passed under a haze of self pity with challenges to face around medications, new lesions and a mini relapse until one day, on waking, her first thought was ‘enough’: “I am not going to let MS take me without a fight”. Michelle’s self confidence was at an all time low. She joined her local gym and started eating healthily. She instantly fell in love with how exercise made her feel: “I felt for the first time that I was in complete control of my body and had so much energy”. Michelle has now lost the two stone and is fitter and healthier than ever, “I’m always on the go, can’t sit still for a minute”, she says. Information on MS, support services and the stories of other people living with MS have greatly helped Michelle. She has come a long way since her diagnosis and has completed a 10.000ft skydive, regularly attends musical festivals and gigs, runs around with her kids and helps fundraise for MS services in Ireland. “A positive mind goes a long way in achieving a healthy body,” according to Michelle. Michelle also received the wonderful news last April that her new medication has resulted in a massive reduction in lesions and some had even disappeared. Michelle shows no signs of stopping and vows to continue exactly what she is doing while encouraging others to take the same path. Michelle’s advice to someone newly diagnosed with MS is, “Take your time. It’s ok to be scared, I was. Learn to listen to your body, when you feel tired, lie down. When you feel like flying, jump out of plane. Let MS empower you to do the things you think you now can’t do. Don’t think this is the end of your life, it’s merely the beginning of a new one.”