N EW K! O LO
Issue 096 AUTUMN/WINTER 2014
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Access Treatments
It’s nearly time for the MS READaTHON!
20 20
35
Relationships & MS
Accessible travel around the world
CONTENTS
14 22
7 CURRENT AFFAIRS AGM Programme Access to Treatments Defeating MS Together Cannabinoids Research
5 12 27 28
FEATURES Living with MS Conference NCPE Process Relationships & MS MS Ireland CE Scheme AgrAbility To me, from me
11 14 20 26 34 38
FUNDRAISING MS READaTHON Get Active for MS Regional & Branch News Get Involved
9 24 30 33
CONNECT WITH US
January-July 2014: MS Ireland in numbers
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Trekkers on our 25th consecutive Camino Trek
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Staff member representing Ireland in the People contacted Women’s Rugby our MS Information World Cup Line for support
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Red MS Ireland t-shirts seen in the Flora Women’s Mini Marathon crowd
Countries, including Ireland, marked World MS Day
Disclaimer: ‘MSnews’ is the magazine of MS Ireland. It exists to foster informed debate and comment about all issues relating to MS. The view of contributors are not necessarily those of the Society. No treatments or therapies should be attempted or products used without qualified medical or professional advice. Multiple Sclerosis Ireland, 80 Northumberland Rd, Dublin 4. www.ms-society.ie | 01 678 1600
[email protected] | Info Line: 1850 233233 EDITOR & EDITORIAL Miriam Taber.
[email protected]
www.ms-society.ie
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ADVERTISING Ailis Egan. Tel: 01 6781600,
[email protected]
www.ms-society.ie
NEWS
Local Property Tax Changes MINISTER FOR FINANCE Mr Michael Noonan TD recently announced that the government has extended the reliefs from Local Property Tax to certain disabled and/ or incapacitated individuals to correct irregularities and inequities. People with MS may be eligible for the reduction or exemption of the Local Property Tax when it is enacted into law. Some people who have already paid the tax may be eligible for a refund of some, or all, of the tax paid.
People with MS may be eligible for the reduction or exemption of the Local Property Tax when it is enacted into law.
Two changes to the Local Property Tax: 1 A reduction in the chargeable value of a property that has been adapted to make it more suitable for occupation by a person with a disability (where the adaptation work has resulted in an increase in the value of the property). The change is that the adaptation no longer needs to have been grant-aided by a local authority, provided the other qualifying conditions are met. 2 A full exemption from Local Property Tax for properties which have been adapted, constructed or acquired for occupation by a person who is completely incapacitated. The change here is that an award from a court or the Injuries Board or the establishment of a public trust fund are no longer required to qualify for this exemption. Legislation has not yet been introduced to give effect to these changes. However pending enactment of the legislation, Revenue will deal with affected cases.
Now is the time to TAKE ACTION! FOLLOWING THE RECENT controversial changes to how people with MS can avail of Fampyra, a drug for the symptomatic treatment of walking impairment in adults with MS, we are calling on the MS Community to take action. Changes, which came into effect on 1st July, mean that Fampyra is now only available at a personal cost of between €225 and €400 per month, which could be prohibitive for many people with MS who have been receiving the treatment for free up to this point on a named patient basis. Fampyra was licensed in Ireland by the HSE on 15th January 2014. However the National Centre for Pharmacoeconomics (NCPE) concluded that it was not cost-effective and were unable to recommend reimbursement. As a result Fampyra is not currently available on one of the HSE payment schemes. Earlier this year MS Ireland launched a media
www.ms-society.ie
campaign to highlight this issue on behalf of people with MS. In addition we are calling for access to approved treatments for people with MS, particularly those which can significantly impact on a person’s ability to remain independent. We are asking you to join us in calling on the HSE to make Fampyra available through one of their payment schemes.
Please lobby your local TD or political representative on this important issue. You can do this using the prewritten submission directly from our website: www.ms-society.ie. Simply select the TDs you would like to email, fill out your details and hit send.
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NEWS
CONGRATULATIONS ARE IN ORDER DURING THE RECENT European MS Platform (EMSP) Spring Conference, held in Dublin in May, their Annual General Meeting saw former Chief Executive of MS Ireland and Vice President of EMSP Anne Winslow elected as the new President of EMSP. Anne is deeply committed to promoting equality of life for people with disabilities and to working on the supports and services required to enable people live a full life. On behalf of the Irish MS community we would like to extend our congratulations to Anne and wish her well in her new role.
Medical Card Submission Following the launch of a complete medical card eligibility review, the HSE asked for representative organisations to make a submission around this vital issue. Using the results from a survey of the MS community conducted by MS Ireland we made this submission to the HSE regarding medical cards for people with MS. MS Ireland also helped frame the submission made by the Neurological Alliance of Ireland (NAI) on behalf of people with neurological conditions, including MS.
PROFESSOR MICHAEL HUTCHINSON, Consultant Neurologist, St Vincent’s University Hospital; Newman Clinical Research Professor, University College Dublin and MS Ireland’s Medical Advisor, was awarded the 2014 ABN Medal. Awarded annually by the Association of British Neurologists, the ABN Medal recognises outstanding contributions by British and Irish neurologists to the science or practice of neurology, or for contributions to the Association. Congratulations to Prof Hutchinson on receiving this prestigious award.
A snapshot of results concluded from our survey:
63%
of respondents thought access to medicines under the medical card were essential
71%
deemed access to GP services as essential to enable them to remain well
64%
felt that the medial card was critical in access in therapy services in the community
70%
said that the medical card was critical in sourcing affordable respite
We will continue to monitor this situation and provide an update as soon as possible.
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www.ms-society.ie
NEWS
Council Meeting, Presentations and AGM 2014
PROGRAMME 10.30 Tea/coffee COUNCIL MEETING 11.00 – 12.30 Council Meeting (Meeting for all elected Council members) 12.30 – 1.30
Saturday, 13 September 2014, Hilton Hotel, Kilmainham, Dublin 8 MS Ireland invites people with MS, their family and friends to presentations and our AGM in Dublin. The presentations will cover information on the European MS Platform (EMSP) and also governance, in light of the new Charities Regulator, and what this means for MS Ireland.
Lunch
EMMA ROGAN, PROJECT CO-ORDINATOR, EMSP 1.30 – 2.00 Support, Advocate and Act for people with MS in Europe SHEILA NORDON, IRISH CHARITIES TAX REFORM (ICTR) 2.00 – 3.00 Good Governance Practise – Willing vs Regulatory Compliance 3.00 – 4.30 Annual General Meeting 4.30 – 4.45 Discussion on MS Ireland’s Strategic Plan 4.45 Close
VENUE AND ACCOMMODATION The Hilton Hotel, Kilmainham, Dublin 8 has a number of wheelchair-accessible bedrooms, a gym, steam-room, sauna and hydrotherapy pool. There is also a car parking rate of €5 for the day to MS Ireland members. For delegates attending the lunch, there will be a €10 charge. To book for lunch, please contact Denise Carey on (01) 678 1600 or
[email protected]. For overnight accommodation please contact the Hilton Hotel directly. The hotel has a limited number of rooms available so delegates planning to stay overnight should contact the hotel immediately. Alternative hotel accommodation is available in nearby hotels - The Maldron Hotel, www.maldronhotelsmithfield.com or The Ashling Hotel, www.ashlinghotel.ie.
MS Ireland’s Strategic Plan If you would like to contribute to MS Ireland’s strategic plan for the years 2015–2017, there are a number of options available for you to do so: From 1st September, you can log on to the MS Ireland website and complete our survey in relation to our strategy. There will be a discussion on strategy after our AGM meeting on 13th September 2014. Members will be given an opportunity to contribute their views at the Regional Integrated Branch meetings. We would ask members to submit their views through one of these options only.
www.ms-society.ie
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NEWS
MS Ireland in the media Over the past few months MS Ireland has featured strongly in the media, advocating for our MS community on a range of topical issues. We are working hard to make sure the issues facing people with MS, their families and carers nationwide are highlighted in the media. 1
THIS HAS BEEN a busy year with a wide variety of topics relating to MS covered in the Irish media ranging from potential new treatments and funding cuts to challenging
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the government and living day-to-day with MS. MS Ireland is your organisation and we are here to advocate on behalf of the entire MS community whether you’re living with MS, a concerned family member, friend or health professional. We work with our dedicated and passionate spokespeople to become a unified voice to create positive change for people with MS. We also work with our associated
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organisations, the European Multiple Sclerosis Platform (EMSP) and the Multiple Sclerosis International Federation (MSIF), to address the needs of Irish people with MS internationally. This will often be in the form of an interview on the phone or face-to-face; a live or pre-recorded interview on radio and television or providing case studies for use in governmental submissions or reports. Recently we spoke out against the changes relating to Fampyra which has meant that as of 1st July 2014 people receiving the treatment are faced with a monthly charge of between €225 and €400. Among other outlets we appeared alongside our spokespeople in The Irish Times, Sunday Independent and on RTÉ’s Morning Ireland. This coverage ensures that this issue remains in the public awareness and in turn, on the political agenda. In addition to current affairs MS Ireland, the people we support and the services we provide have featured in a
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range of national and regional media outlets including The Irish Examiner, Evening Echo and Today FM. This is just as important as dealing with political issues as it means our supporters are aware of the work their time, effort and fundraising benefits. Check out the Media Centre on our website to find out more.
1. MS Ireland spokespeople speak on Morning Ireland 2. Newstalk report on funding cuts to the disability sector 3. Sativex speculation in The Irish Examiner 4. Fampyra features in The Irish Times 5. Maebh Horan Murphy, Matt Cooper, Ava Battles & Gareth Wogan at Today FM
Across Ireland we are always looking for people with MS, carers and family members who are willing to speak publically about their experiences of living with MS. If you would like to become an MS Ireland spokesperson please fill out the form on our website: www.ms-society.ie or call Denise on (01) 678 1600.
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www.ms-society.ie
FEATURE
Inspiration at the
the Mini Marathon WE MET TINA Byrne when we were cheering on Team MS Ireland in this year’s Flora Women’s Mini Marathon. Having heard that this was the fourth year she had taken on the mini marathon for MS Ireland we knew we had to meet her.
Paddy Top: Tina and ce ra e th after lin Firemen Top right: Dub the race! r te af with Tina d her mini Right: Tina an rleaders marathon chee
for its mountains, the couple soon learned that while the apartments they were staying in were wheelchair-friendly, getting up there was a different story. Paddy nearly passed out
TINA WAS DIAGNOSED with secondary progressive MS
pushing Tina’s chair up the hills in 45 degree heat while she
25 years ago. The couple now have three grown children,
was delighted to bask in the sunshine. In true Tina-style she
the youngest of which was just two years old when Tina
commented that Paddy was pushing better last year!
was first diagnosed with MS. After hearing “You have MS”,
Listening to these stories from years gone by it’s clear that
Professor Hutchinson uttered the magic words: “You can cry
this positivity extends to their daily life. While abroad Paddy
now.” Seeing his wife’s reaction, Paddy says how he never
remembers being slightly embarrassed when two girls from
thought eyes could cry so much. When the news had settled
Cork came up to the pair and said how they had never seen
in somewhat, Prof Hutchinson recommended they contact
a couple so much in love as they had never stopped holding
MS Ireland. Tina says she took in nothing after this: “My mind
hands. What Paddy didn’t say was that Tina’s mobility wasn’t
hurt from taking in so much information. We were in with MS
great at the time and if he didn’t hold her hand she would
Ireland the next day.” Following her diagnosis Tina was in a
stumble over!
trance but after a counselling session with MS Ireland she
Like many couples facing times of uncertainty, Paddy and
bounced back. After this Tina and Paddy made a decision to
Tina try to take the best foot forward. Paddy says: “Tina is
live their lives to the full and, while they could, go on as many
just a super person, she doesn’t like being fussed over at all
holidays as possible.
and, trust me, there’s never a dull moment. She might have
One such holiday to Lanzarote took a dramatic turn when
her down moments but they never last.” Tina notes how her
Paddy went for a walk having left Tina back to their apartment
choice to maintain her positive attitude throughout her life
to cool down in the air conditioning. Before his drink even
with MS has helped her through the darker times: “Attitude is
arrived something told him to go back to the room and within
everything. I always think, ‘Anyone could be dead tomorrow’,
minutes he saw why he was right to. Tina was on the balcony,
why worry?” And that’s just Tina, no matter what she is facing
head tilted back, passed out and breathing at irregular
she does it with a good spirit and we’re delighted to have her
intervals. Fear took hold as he climbed the fire escape, carried
on Team MS Ireland.
his wife into the bathroom and lay her down in the bath where
Paddy says: “We met on New Year’s Eve 41 years ago. She
the cold water flooded the floor. When Tina came around
was 17 and I was 18. We’ve had our ups and downs, no more
Paddy was shouting at her not to die on his birthday but things
than anyone else, but when Tina got MS and after our initial
were about to get worse –Tina had no recollection of her
counselling session with MS Ireland, I could only love her all
surroundings or who Paddy was. During a visit after four days
the more after the way she handled her MS and still does to
in the clinic there was relief when she was asked to idenitify
this day. Outpatients are now often on long waiting lists of
the man in the room and Tina said, “My husband of course!”
a year or more so we, like so many others, would be on our
During another holiday to Puerto Rico, which is well-known
www.ms-society.ie
own only for MS Ireland.”
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CONFERENCE
EMSP Conference Recap Here at MS Ireland we were just thrilled to be involved in the organisation of the European Multiple Sclerosis Platform Spring Conference in May. Welcoming Europe’s MS Community to Dublin was definitely a highlight of our year so far. We would like to say thank you all our colleagues at EMSP, the incredible line-up of speakers and all of our wonderful volunteers for making this conference such a success.
Left: Ava and a surprise visitor – Sir Cliff Richard! Centre: Ruth McIver (Novartis) with our MS and Me blogger Aoife Kirwan. Right: The view from the main conference room
FOR THOSE OF you who were unable to attend, don’t worry,
Prof Gavin Giovannoni and Dr Alexis Willet gave a brief
read on for a brief update of how the sessions went over the
update on the European Code of Good Practice in MS
two days.
and called on neurologists to get more involved in further
Kathleen Lynch, Minister of State, Dept. of Health and Dept.
training.
of Justice, Equality & Defence, opened the conference with
Anne Winslow launched the Ireland Under Pressure video
a very moving speech which had the entire room on its feet
which featured the moving stories of three Irish people
afterwards. Among other issues she raised about the most
living with MS.
vulnerable people in our society being hit time and time
One of the highlights of the conference came from
again with cuts to services, Ms Lynch also revealed that her
Elisabeth Golding’s honest and moving account of being a
niece was recently diagnosed with MS.
carer to her husband, former EMSP President John Golding.
Unsurprisingly one of the most popular sessions of the
We wanted to share with you some of her inspiring words:
conference was the Young People’s Focus. EMSP Believe
“I have realised that there are many caregivers and relatives all
& Achieve Project Coordinator Emma Rogan led the
around the world who feel deep loneliness and have a great
workshop while Shana Pezaro from the UK MS Society
need to share their plight, their feelings, and their thoughts
spoke of how her life changed for the better (eventually)
with someone.
following her MS diagnosis. George Pepper from Shift.ms
A marriage partnership is usually drastically changed when
told the room about his experiences with MS and how his
one of the partners is diagnosed with MS. It is not always the
organisation is trying to challenge young people to change
healthy one who would like to end the relationship. I know of
their perspective after being diagnosed with MS.
couples who have moved into separate bedrooms the very day
MS Ireland’s Aidan Larkin and EMSP President Anne
of the diagnosis. Personally, I have had to fight hard through
Winslow facilitated an in-depth workshop about MS Nurse
the many years of living with an MS person. I have to make
PROfessional. Using five key modules of online learning,
sure that his self-worth remains intact and that he realises
MS Nurse PRO, is the first CME-accredited online platform
how important he still is to me, to our children and our friends
for MS nurses in Europe.
despite the fact that the disease may progress and deprive him of many possibilities.”
Don’t forget to check out our website to see all the presentations from the conference and watch the Under Pressure video: www.ms-society.ie.
PAGE 08
www.ms-society.ie
MS READATHON
BOOK A SCHOOL VISIT! Last year was a record-breaking year for our School Visit Programme with almost 100 visits taking place in
OCT 10th - NOV 10th 2014
There’s nothing quite like the start of a new school year – the mad dash to tick off the endless list of new books and stationery, the denial that the early morning breakfast mess will soon take over the kitchen and the sudden realisation that the tie is missing. And of course let’s not forget, it’s almost time for the MS READaTHON!
An ambassador’s perspective
- Susan Doyle
I WAS AN MS READaTHON School Ambassador last
schools across the country. Now in its fourth year we want to reach even more schools. During each school visit a trained School Ambassador speaks to a class to teach them what MS is, what it’s like to live with MS and how taking part in the MS READaTHON helps to support MS Ireland’s services. Most of our ambassadors are living with MS and really enjoy presenting to students so they can fully understand just how important their participation in the MS READaTHON truly is. Some use our specially created flip chart during their presentation while others simply speak from the heart. Either way this is one of the most exciting parts of the MS READaTHON and, with more ambassadors on board for 2014, it’s going to be bigger than ever!
Win a training session for your class with one of Ireland’s top sports stars!
year in Co. Wexford.
WE ARE EXCITED to announce that our MS READaTHON
Between the two small
Ambassador Programme is growing! Please give a warm
national schools I visited
welcome to the faces of our 2014 camapign:
(each with around 150 pupils) the children of 5th and 6th classes were able to raise over €970
Henry Shefflin, Kilkenny hurler and GAA GPA All Star Rob Hennelly, Mayo GAA Goalkeeper Duncan Williams, Munster Rugby Scrum-half
and €1600 respectively.
All participating schools are in the running to win a class
I thought that this was a
training session with one of our ambassadors. See our
wonderful amount of money for the MS READaTHON and what an achievement from these two schools in rural Ireland.
website for full details.
The children asked very intelligent questions and after my
Teacher Resources
little talk I showed them my adapted car with hand controls.
DID YOU KNOW you can download a whole host of
Two weeks later, I received a fabulous scrap-book with
informative and engaging resources from our website? Our
letters of thanks from the pupils (pictured).
Teacher Resource Guide makes it easy to teach students
Many of the children wrote how they hoped that a cure
about MS. Our Info and Class Activity Sheets are designed
would be found for MS in the near future. My scrap book of
to make each lesson fun for the entire class. Child-friendly
thanks now has a very special place in my home. What a nice
videos explaining MS and life with MS are also available to
way of saying thank you!
watch on our website.
Is there a school in your area that would like to have a visit? Would you like to become an MS READaTHON School Ambassador? Email the team at
[email protected] to get involved and spread the word in your community! or call (01) 678 1600
www.ms-society.ie
Great prizes to be won! OPEN TO BOTH individual participants and schools, our competitions are there to make the MS READaTHON even more fun for everyone. Find out more on our website:
www.msreadathon.ie. PAGE 09
WORLD MS DAY
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1: Somewhere behind those balloons are Ailis & Diana on Grafton Street 2: Getting the kettle on in Donegal! 3: Ava, Willeke & Audrey and Miriam, at the World MS Day photocall 4: Geraldine, John & Pamela at the bucket collection in Dundrum 5: Our Dublin West Branch launch balloons in Clondalkin 6: Southern Regional Office celebrate a successful conference!
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Thanks
for getting involved! WORLD MS DAY 2014 has been and gone but it’s certainly not forgotten! Across the globe thousands of events were held in almost 70 countries to celebrate the day but closer to home MS Ireland organised a range of activities in every corner of the country. Whether you attended our one day Living with MS Conference in Cork, race night in the West, family days and coffee mornings in the Mid West, North West and South East, music, coffee and a car wash at the MS Care Centre or bucket collections and information seminars in Dublin and the North East, know that you helped Ireland mark World MS Day.
One Day I wish MS was history!
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A huge thanks to everyone who supported this year’s World MS Day. You joined the global movement and helped to raise awareness of MS around the world!
ONE DAY WISHES THANKS TO EVERYONE who shared a One Day Wish for the future. This proved to be one of the most active and inspirational parts of our World MS Day activities and we loved sharing your wishes with the world! See below for just a few or check out our website to see the Wall of Wishes: www.ms-society.ie/wishes.
One Day I wish I could see my mother dance the way I imagine she would have back before MS was part of her life. One day I want my beautiful boy to be cured of MS but right now to live his life. One Day I wish that we can say “I had MS”. I wish people would understand that I’m not lazy, just chronically fatigued from MS!
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Save the date! World MS Day 2015 Wednesday, 27th May
www.ms-society.ie
WORLD MS DAY
Living with MS Conference
Prof Michael Hutchinson, Gabrielle O’Keefe, Dr Eric Downer, Dr Brian Sweeney, Ava Battles & Liz Hooley
On World MS Day 2014 MS Ireland hosted a one day conference, Living with MS, in Cork. MS and Me blogger Declan Groeger was there to report on the day’s sessions. DR BRIAN SWEENEY, Consultant Neurologist Cork University Hospital, kicked off the day by bemoaning the fact that even if 12 more neurologists were appointed by the HSE the ratio would only be 1:100,000 and that would still be shy of what is needed. He spoke on the incidences of MS with Europe standing at 108:100,000 while North America has the unenviable figure of 140:100,000. I’m glad I’m European. He mentioned the signs and symptoms but sadly we are all too aware of those even though we all present differently. Thankfully we don’t all have each sign and symptom. The average age at diagnosis is 30; more women than men have MS, there is an hereditary factor, albeit a small one; 97% of people with MS (PWMS) have no family history. I have previously blogged on the need for PR training for those giving diagnoses and Dr Sweeney told us how the use of medical jargon is being discouraged in medical student training. Not quite PR training but it’s a start. While commenting on the available treatments he said that MS is a marathon not a sprint. Treatments should be considered with the long-term plan in mind and he urged us not to look for ‘instant gratification’. He warned of patients having too high an expectation of any drug but I think that we all know that the treatments currently available are not cures but hopefully are at least stabilisers. Dr Sweeney noted that the two aspects of MS that cause most concern to PWMS are walking and vision and, with that in mind, he said that Fampyra should be available without the needless worry of cost. Dr Eric Downer, Department of Anatomy & Neuroscience, University College Cork, spoke on his Cannabinoids research – he started by noting that he was scientist, not a clinician, who rarely meets patients. Cannabinoids have been used in the treatment of tumours but what has achieved most notice over the last number of years is its use in the alleviation of spasticity and tremors in MS. Over the years cannabis has had bad press with its recognition as a psychoactive drug. Its components are readily absorbed into the system and thus give instant gratification. There are between 80 & 100 active components in cannabis but only two are of real interest, with THC being one. This psychoactive element of cannabis reaches a very high level in the body and stays active for a prolonged period after smoking but when ingested medically its peak is much lower and it remains in the system for a shorter period of time.
www.ms-society.ie
Professor Michael Hutchinson, Consultant Neurologist, St Vincent’s University Hospital (Dublin) and MS Ireland Medical Advisor, spoke on Vitamin D and its role in MS. He told us that research is ongoing but much more is needed as there is no universally agreed intake level and its presence, or lack thereof, does not completely explain the prevalence of MS in certain areas. Vitamin D is naturally available through sunlight and fatty fish but both are insufficient Ireland. Prof Hutchinson recommended a daily supplement especially in the winter months but a discussion with your doctor should take place before starting any supplementation. He gave some very interesting facts regarding Vitamin D Vitamin D deficiency may lead to increased susceptibility to MS The incidence of MS is higher in North East France than in South West France Immigration prior to the age of 15 causes the immigrant to acquire the MS risk of the recipient country and the converse is also true A 22 year study of US armed forces concluded that Vitamin D protects against MS MS activity tends to be seasonal, being more active in the spring, after winter, when our Vitamin D levels are depleted and very low activity is often seen in autumn/early winter when levels are raised after the summer sunshine High Vitamin D levels reduce the rate of brain atrophy in early MS Authors note – take plenty of sun holidays, eat fatty fish and you’ll be grand!
Declan Groeger is an accessibility activist raising awareness and bringing about change so that everyone, wheelchair users, people with different abilities, can live independent lives. He is also a member of the MS Ireland MS and Me Blog team. See more from Declan at www.ms-society.ie.
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TREATMENTS
Access to new drugs for people with MS in Ireland Dr Lisa Costelloe is a Consultant Neurologist at Beaumont Hospital, Dublin.
MS IS A chronic inflammatory disease of the brain and spinal cord which is a major cause of neurological disability in young people. In Ireland there are approximately 8,000 people living with MS. It is now recognised that both the incidence and prevalence of MS are increasing worldwide and demands on MS services are expected to continue to increase in line with this. The disease course is variable and can range from relatively benign to more aggressive.
There are several ongoing trials looking at newer DMTs in progressive forms of MS and the hope will be that an effective therapy will become available in the future. Most patients start off with periods of worsening symptoms known as relapses, interspersed with periods of relative disease quiescence known as remissions. It is this early relapsing-remitting (RR) phase of the disease that responds to disease modifying therapies (DMTs). The goal of modern MS treatment is to suppress the disease in the early relapsing phase in order to prevent development of progressive disease and disability many years later. It is now known that the number of relapses that occur in the first five years of the disease course predicts the degree of disability 10-15 years later. Many patients with RRMS will go on to develop progressive problems with walking, bladder control etc. several years after disease onset; this is known as secondary progressive MS (SPMS). Some people with MS do not suffer from relapses at all but instead have progressive problems with mobility and balance from the beginning; this is known as primary progressive MS (PPMS). SPMS and PPMS do not respond to currently available DMTs. However, there are several drugs to treat the symptoms associated with these types of MS which help with quality of life. There are several ongoing trials looking at newer DMTs in progressive forms of MS and the hope will be that an effective therapy will become available in the future.
How MS drugs are funded - The high-tech community drugs scheme IN RECENT TIMES several new drugs have become available for the treatment of MS. Most of these are DMTs for use in relapsing forms of MS, but there have also been advances
PAGE 12
with medications to treat symptoms such as problems with walking for patients with more progressive forms of MS. All of this is very promising for people with MS. However, depending on how the drugs are funded, some patients may be faced with problems accessing certain medications. In general if medications are administered at home or ‘in the community’ the drug company that manufactures the medication can apply to have this drug reimbursed as part of the high-tech community drugs scheme. If MS drugs are part of this scheme it means that patients will not need to worry about gaining access to them if they are prescribed by their Consultant Neurologist. Eligibility for this scheme is determined in part by an assessment of how cost effective the medication is. This assessment is carried out by the National Centre for Pharmacoeconomics (NCPE) and a review panel then makes a recommendation to the Health Services Executive (HSE) and the Department of Health about eligibility of the drug for reimbursement. Several available DMTs for relapsing MS are funded from the high-tech community drugs scheme including medications that are injected by the patient at home such as Interferon– beta 1a (Avonex), Interferon-beta 1b (Rebif or Betaferon/ Extavia) or Glatiramer acetate (Copaxone). More recently Fingolimod (Gilenya), used for more active forms of relapsing MS, has also been reimbursed on this scheme as it is a tablet which is taken by the person at home. Two new MS drugs, both of which are DMTs for use in patient with relapsing MS, are given in tablet form have recently been licensed for use in Ireland. Teriflunomide (Aubagio) reduces the relapse rate by approximately 30% per year. Another tablet called dimethyl fumarate (Tecfidera) received a license in Europe earlier this year and it promises to be more effective as it reduces the relapse rate by about 50% per year. The hope is that both these drugs will be reimbursed as part of the high tech community drugs scheme and will therefore be easily accessible to patients who need them.
How are drugs given in the hospital funded? IF AN MS drug is not administered in the community and needs to be given in the hospital setting it will not be reimbursed on the community scheme. In general drugs that are given in the hospital are for more active forms of MS and as such are needed in much smaller numbers of patients. Natalizumab (Tysabri), one such drug, is administered on a monthly basis as an intravenous infusion in a day ward setting. It is generally well tolerated and it has demonstrated significant quality of life benefits for people with MS with very active disease. It is however associated with an increased risk of serious infection and needs close specialist medical
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TREATMENTS supervision. The duration of use is individualised and depends on weighing up the clinical benefits and the risks of side effects in the long term. Alemtuzumab (Lemtrada) is another hospital administered MS drug that has recently received a license in Ireland for patients with more active MS. It requires admission to the hospital on two separate occasions 12 months apart. Though highly effective it is associated with significant side effects such as thyroid problems which need to be monitored with blood tests for up to four years after the last dose of the drug. Hospital administered drugs are more expensive than drugs given in the home, and in addition to the cost of the medication itself there are additional costs relating to nursing staff and hospital admission in some cases. The cost of these drugs comes out of the public hospital’s budget and in some hospitals in Ireland access to these medications is limited for economic reasons. If a patient has private health insurance and needs these medications the cost will sometimes be covered in a private hospital but this will depend on the type of premium the patient has with their health insurer.
What about new treatments for MS symptoms such as Fampridine (Fampyra)? FAMPRIDINE (FAMPYRA) IS a tablet that has recently been licensed in Ireland. Unlike the other drugs mentioned this can be used in both relapsing and progressive MS patients who have significant problems with walking speed. It does not alter the course of the disease in the long term (ie - it is not a DMT). It improves walking speed in approximately 30% of patients who try it and as such it is given initially on a trial basis for either two weeks or one month. This initial trial period of the drug is provided free of charge by the drug company. The neurologist measures walking speed before
and after the therapy and if there is an objective improvement in walking speed the person is said to be ‘a responder’ to the drug and could potentially continue treatment. Although Fampyra is given at home in tablet form, it has not been reimbursed on the community drugs scheme as it was not found to be cost effective by the NCPE. As of 1st July 2014 this means that if a person responds to the treatment and the neurologist recommends continuing it, they will have to pay for the medication themselves. The cost of Fampyra per month will vary from pharmacy to pharmacy but it is estimated at between €200 and 400 per month.
What can we do to improve access to new drugs for people who need them? THESE ARE HOPEFUL times for people with MS and for the doctors who treat them. There are several new drugs available and the hope is that, with advances in research, there will be many more to come. Doctors need to work on behalf of their patients in collaboration with the HSE and pharmaceutical companies to ensure that all patients have access to the drugs they need when they need them. It is possibly through the development of a ‘ring fenced’ budget for MS drugs at a national level that this will be possible in the future. At an individual level patients need to agitate and advocate for themselves in collaboration with their doctors and with organisations like MS Ireland in order to gain adequate access to the medications that are prescribed for them. There is power in numbers and people living with MS need to make their voices heard through interaction with the media and formation of patient groups.
Get involved with advocating for access to treatments at www.ms-society.ie.
Track your symptoms online MS IRELAND RECENTLY assisted with a nationwide survey which examined the value of online resources for Irish people living with MS in managing their condition. The results show a growing trend for using online tools to manage MS in a variety of ways. 74% of respondents agreed that the use of online communications has improved their understanding of their MS 38% agreed that a tool with the ability to track details of medication and illness over time, to print off or share with a new doctor would be very useful 80% agreed that they would find it helpful to interact with other people with MS and carers in an online forum Pow Health is a free online resource which is designed to give you more control over your long-term health. Through Pow Health you can create a profile to track your symptoms and monitor this over a set period of time. This information is
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freely available to you for use at doctor’s visits or simply for personal interest. By joining the MS community group you can anonymously talk to and share your experiences with others living with MS. FAQ Is it safe and secure? Enjoy complete peace of mind throughout, as your data is stored securely and is completely anonymous. You control what you share. No personal data will ever be used or shared with a third party without your consent. Who is this website for? This site is for everyone who wishes to record their MS, keep track of other aspects of their medical history and be able to access it at any time, or share it with a doctor (or family member) when required. Sign up at www.powhealth.com.
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TREATMENTS In light of the recent talk of Fampyra, the NCPE and the process by which drugs are reimbursed through the HSE we thought it would be useful to offer a full view of the various stages of this complex process. Here, the NCPE explain how it works closely with the Department of Health and pharmaceutical companies in Ireland.
NCPE process
explained
THE NATIONAL CENTRE for Pharmacoeconomics (NCPE) was established in 1998 to promote expertise in Ireland for the advancement of the discipline of pharmacoeconomics through practice, research and education. The mission of the NCPE is to facilitate healthcare decisions on the reimbursement of technologies, by applying clinical and scientific evidence in a systematic framework, in order to maximise population wellness. Today the Centre conducts the health technology assessment (HTA) of pharmaceutical products for the Health Service Executive (HSE) in Ireland. An agreement between the Department of Health, the HSE and the pharmaceutical companies outlines the process for undertaking these assessments. In Ireland the State asks the pharmaceutical company who is requesting a new drug to be paid for (reimbursed), to present the evidence that the drug will provide benefit for patients and is cost effective. This happens in two stages: A rapid review document is submitted by the pharmaceutical company and the NCPE review this to assess whether more information is required. If so, this is requested through a full HTA (full pharmacoeconomic assessment). The outcome of a rapid review can be: Full Pharmacoeconomic Assessment Recommended Full Pharmacoeconomic Evaluation not Recommended A full pharmacoeconomic assessment, if required, is submitted by the company usually within 3-6 months of the rapid review recommendation. This submission dossier is reviewed by the NCPE and the recommendation is one of the following: Reimbursement recommended Reimbursement not recommended Reimbursement not recommended at the submitted price.
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If reimbursement is recommended the drug is made available on the appropriate community drugs scheme (Medical Card (GMS), Drugs Payment Scheme (DPS), Long Term Illness Scheme (LTI) or the High technology Drugs Scheme (expensive drugs) within 40 days. If the drug is for hospital-use only, the decision is made by the hospitals themselves. If reimbursement is not recommended the NCPE usually consider that the evidence presented to support the benefit is insufficient. This may be the evidence used to support how well the drug works, how safe it is or if cost effectiveness evidence was not presented at all by the company. If reimbursement is not recommended at the submitted price the NCPE may recommend to the HSE that the drug may offer some health benefit but the price requested by the pharmaceutical company is too high for the amount of benefit offered. In this case, price negotiations will begin between the pharmaceutical company and the HSE. In some cases agreement is reached to make the drug available at a fair price.
Treatments for Multiple Sclerosis (MS) THE NCPE HAVE assessed a number of drugs for MS in the recent years; the outcomes of all assessments are published on www.ncpe.ie. The first drug was natalizumab (Tysabri®) which the NCPE considered to be border line cost effective and recommended its use under hospital specialists. Fampridine (Fampyra®) was reviewed in 2012 and not recommended for use due to non-submission of cost effectiveness evidence by the pharmaceutical company Biogen. Biogen proposed that they would submit this data but this has not been received to date. The HSE have requested this again from Biogen in light of the issues highlighted by patients and we await this evidence. From 2011 to 2013 the NCPE have reviewed fingolimod (Gilenya®), teriflunomide (Aubagio®) and alemtuzumab (Lemtrada®). Reimbursement on all of these drugs has been agreed following pricing negotiations. We will shortly review dimethyl fumarate (Tecfidera®) and Delta-9-tetrahydrocannabinol /Cannabidiol (Sativex®).
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TREATMENTS
The NCPE have assessed a number of drugs for MS in the recent years; the outcomes of all assessments are published on www.ncpe.ie. Research in MS
How can MS patients contribute?
THE NCPE UNDERTAKES research in the area of cost and comparative effectiveness of medicines in Ireland. Over the past three years Dr. Emer Fogarty has examined the cost effectiveness of MS drugs in Ireland. The project aimed to gather information on quality of life of MS patients, effectiveness of treatments and the costs incurred by patients and the health service. The project was conducted in collaboration with the Neurology Department in St. Vincent’s University Hospital, Dublin.
The NCPE are working with patient groups through the Irish Platform for Patients’ Organisations (IPPOSI) to enable patients to contribute evidence on cost effectiveness. We welcome submissions from patient groups and are currently developing a template for groups to use. The NCPE advise that those interested check for updates on the NCPE website (www.ncpe.ie), and if a drug is recommended for full HTA to contact the NCPE via our website for further information on submitted information.
Sharon Dillon explains the personal cost of losing access to Fampyra. I SUFFERED A relapse, which began in September 2011, 5 months after the birth of my twin daughters. IN FEBRUARY 2012 my neurologist prescribed Fampyra, which had improved the mobility of other patients. At this point I was walking very slowly with two crutches, I had numerous falls and was obviously very anxious about the speed at which my symptoms had progressed. I was more than happy to try any suggestions made by my neurologist, after all, two more tablets a day wasn’t a difficult commitment to make. After only two days on the medication my walking was more stable and after one week I was strong enough to walk with only one crutch. Now I walk with one crutch when I am outside and at work while at home I can manage entirely without the crutch. Fampyra has also increased the distance I can walk before I need to rest. There was an occasion last year when I was asked to reduce the dosage to one tablet per day but within just one week I noticed a decrease in my mobility and needed to go back to using two crutches. If Fampyra is now going to have to be completely
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This medication makes it so much easier for me to do the things others do without even a second thought. privately funded I fear it will be become too expensive for me and without the drug I fear I will lose my independence. I may have to reconsider my ability to continue working and require more help to care for my children. This medication makes it so much easier for me to do the things that others do without even a second thought - even something as simple as carrying a drink from one room to another becomes impossible if you need two crutches. I would hope that those who are making these decisions would consider the significant extra costs that may be incurred if those who need this medication are unable to access it. If these same people could come and see the positive effects this medication has had on the lives of MS patients and our families, they would see that this tablet has helped with one symptom of MS and how we still fight a large number of other symptoms on a daily basis.
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TREATMENTS
Pharmacists – there to help
Many people believe that a pharmacist’s job is just to dispense medicines. However, your local pharmacist does a great deal more than meets the eye. Ciara McCabe of McCabes Pharmacy explains more. DO YOU EVER wonder, “Why is that pharmacist taking so long getting my medicine? What is taking so long?” Pharmacists have an important role in ensuring a patient’s medicine gets to every patient correctly every time. We do many checks throughout this process and international research has proven that having a pharmacist dispense medicines is the safest way of ensuring people receive the correct medicines. This is why, across the world, every country uses pharmacists. At McCabes Pharmacy we are working hard to improve procedures to make getting your prescription dispensed as quickly, safely and easily as possible. We review every patient as a unique case, taking all variables into consideration including all the medicines they are on for any other pre-existing conditions. Often consultants may prescribe medication for one condition without realising that this can have a significant knock-on effect on how other medicines work or impact the course of other conditions the patient may have. To this end, it’s important to use one pharmacy for all your medicines, especially if you have more than one illness. Pharmacists are an important part of communities right across Ireland, with the Irish Pharmacists Union stating that a typical person visits a community pharmacy 19 times a year. Pharmacists have detailed knowledge of medicines and how they interact. Often in the process of dispensing a medicine, your pharmacist may need to contact your doctor to ensure you are getting the most appropriate treatment for you. In fact, this is much more common than people realise and pharmacists regularly communicate with doctors on potential patient issues such as this, often with the result that the doctor will make a change to the original prescription to make it a more effective treatment for you. For any long-tem condition with varying medications, like MS, a pharmacist can help you find the way to manage your condition that suits you best. If you are on complicated medicines or many different medicines, our EasyMed trays (pictured) may assist you in organising your medicines better, helping you take the right medicine at the right time. These trays are filled by our trained pharmacists, as shown in picture and are free of charge. You can ask any McCabes Pharmacy about this.
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While we are talking about cost, always ask your pharmacist about what is the most cost-effective way to get your medicines. There are many different HSE payment schemes available, such as the Medical Card, and people with MS are eligible for the Long-term Illness Scheme which can help make savings on prescriptions. Generics are often cheaper than branded medicines so discuss with your pharmacist if this is an option for you. And, of course, you are entitled to get tax back on your medicines on drug refund and private schemes and yes, this includes tax back on FAMPYRA. An Irish pharmacy is very strictly regulated, our medicines are only sourced through carefully vetted channels. There is an issue with counterfeit medicine entering Ireland which has been documented many times and is a public health concern. When you get your medicine through an Irish pharmacy you know you are receiving exactly what is prescribed. I would urge people to be very careful about buying medicines on the Internet. There are currently no licenced pharmacies delivering medicines in Ireland in this way. All pharmacists have a broad knowledge across many different illnesses and are easily accessible. McCabes Pharmacy has two pharmacies open until 11pm seven nights a week - Dundrum Town Centre and Pavilions Shopping Centre, Swords. This makes a pharmacy a good first point of call for queries you may have out of hours. Of course there are may more services pharmacies offer such as prescription collection services, home delivery, advance preparation to reduce your in-store waiting time, out of hours service and a range of health screenings including cholesterol, 24hour blood pressure monitoring, iron tests etc. So whatever your health needs, don’t forget to check with your pharmacist. We may be able to help you in more ways than you imagine. See the Irish Pharmacy Union website for details on the services your pharmacist can provide:
www.ipu.ie.
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TREATMENTS
Nutrition, diet & MS DIET AND NUTRITION are rarely discussed with a doctor when first diagnosed with MS. This is a confusing time and there is a mass of other new information to digest and so, ways to self-manage symptoms is usually something an individual person decides to take action on. Diet is a key to active self-management, promoting good general health and wellbeing. Good diet can play an important role in managing symptoms such as fatigue and constipation while a poor diet can result in a worsening of some symptoms, for example, weakness. Astrid Slettenaar’s cookbook, Delicious means made simple for people managing symptoms, was written specifically with people with MS in mind – the first of its kind. Here are some recipes from the book for you to try, taste and enjoy.
Braised pork in a sweet soy sauce
COOKING & MS SYMPTOMS Eighty percent of people diagnosed with MS experience fatigue. This is often a chronic tiredness not directly associated with exertion. Certainly after a tiring day with your family or being at work, the question is whether or not you have any energy left to prepare a healthy meal. Recipes one and two are nutritious but quick to prepare, giving you more time to rest and relax. Sensory disturbances of the skin can often be one of the first symptoms of MS. Sensation in the hands can be diminished or involve tingling, numbness or a burning or electric shock-like pain. Meals requiring a lot of slicing and chopping in their preparation become burdensome. Recipe three calls for little preparation and even less chopping.
Mexican wrap with cod and shrimps
Beef broth with Italian vegetables
PREP TIME 5 MINS PREP TIME 10 MINS
300g diced pork 125g bacon strips 3 tablespoons lemon juice 2 tablespoons sunflower oil 400g stir-fry vegetable mix 5 tablespoons sweet soy sauce 100ml hot water
1. Mix the diced pork in a bowl together with the strips of bacon and lemon juice. 2. Heat the oil in a frying pan. Stir-fry the meat and vegetables over high heat for 2 minutes. 3. Add the soy sauce and hot water and allow to stew for 3 minutes. Add salt and pepper to taste. Serve with rice.
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PREP TIME 10 MINS
400g cod (frozen), diced 1 teaspoon taco seasoning salt and (freshly ground) pepper 3 tablespoons sunflower oil 1 jar hot salsa 125g shrimps, cooked and peeled 4 wrap tortillas 125ml sour cream 200g shredded iceberg lettuce
1 jar beef stock with meat (350ml) 1 beef stock cube 250g Italian stir-fry vegetables 3 sundried tomatoes in oil, drained salt and (freshly grounded) pepper 1 bag garlic croutons
1. Flavour the cod well with taco seasoning, salt and pepper 2. Heat the oil in a non-stick pan. Cook the diced fish on one side until golden brown. Turn the fish carefully over with a fish slice or spatula and cook the other side. 3. Add the salsa sauce and shrimp and heat the contents of the pan for 2 minutes. Add salt and pepper to taste. 4. Fry the tortillas on both sides in a pan until crisp. Coat the tortillas with sour cream, layer with lettuce and spoon the fish mixture on top. Fold the tortillas in half. 5. Serve with the rest of the lettuce.
1. Bring a ½ litre of water to the boil together with the beef stock and stock cube in a soup pan. Add the stir-fry vegetables and cook for 3 minutes until al dente. 2. Cut the tomatoes in thin strips and heat for 1 minute in the soup. Add salt and pepper to the soup to taste. 3. Spoon the broth into bowls and sprinkle with croutons or serve on the side.
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MINDFULNESS - Living Well with MS -
THERE’S A DEEP sense of calm and stillness in the room. I open my eyes and look around at the other people in the room, their faces peaceful, some half-smiling, some drifting into half-sleep. I’m struck by how powerful this is, just sitting and being aware of your breathing. In the room are men and women of all ages and backgrounds - most with MS, some without - all of us together for now in this room, united in what we’re doing but each of us on our own journey and with our own unique inner experience. I gently ring the bell to signal the end of the meditation and everyone slowly opens their eyes. It’s the last class on the Living Well with MS mindfulness course and everyone there has been practising mindfulness regularly for the past eight weeks. At first people practised their mindfulness meditations and exercises at home because it was part of the course but, over time, people increasingly practised because they could see the benefits. One of the participants, Carmel, found that once she was practising mindfulness, she was getting enough sleep. Getting to sleep more easily, having a better quality of sleep and not waking up in the night; getting less stressed about small things; less worrying about the future; less mulling over the past; feeling less isolated and more connected to others; better ability to cope with difficult circumstances and less overwhelmed by them – these are all typical benefits experienced and reported by people who have taken a mindfulness class.
Jacinta, another participant on the Living Well with MS course, says: “My husband and my family can’t believe the change in me!” She has found that since she’s been practising mindfulness she’s less stressed and doesn’t get as worried about things. In fact, since the course ended in March, she has had no episode of the dermatitis she used to get when she was stressed. Jacinta has also found that that the quality of her everyday life has improved - because she’s in the moment more often, it enhances her enjoyment of her day. When she’s walking the dog she stops to admire the flowers, which she wouldn’t have even noticed before. When she’s eating she cuts out the distractions of TV, computer and phone, so that she can really taste and savour her meal. The reduction in worrying and the greater appreciation of the pleasant aspects of her days has meant that, under the supervision of her GP, Jacinta is gradually cutting down on the anti-depressants she’s been taking for a while. “It’s been a life-saver”, she says.
WHAT IS MINDFULNESS?
HOW DOES MINDFULNESS HELP WITH MS?
NOT ONE OF us is perfect or without flaws, and no life is without its difficulties and struggles but we often forget this, seeing our difficulties and imperfections as our own personal failures. But there is another way of approaching ourselves and our experience, a gentler and kinder approach that accepts imperfection as part of the human condition and points the way through difficulties and struggles. Mindfulness – usually defined as moment by moment, kindly awareness – is a way of being that enables us to re-inhabit our bodies, minds and hearts bringing us home to ourselves, whatever our circumstances. Learning to be more in the moment means that we spend less time worrying about the future and what it might hold, or thinking back to the past. Worrying about the future doesn’t change anything but it often makes us more anxious and affects the quality of our day to day life. By being in the moment more often you reduce that anxiety. Susan, who has taken a number of mindfulness courses, including Living Well with MS, finds this one of the most helpful aspects of mindfulness: “I find that when my symptoms flare up I start to think ahead and worry about the plans I’ve made and whether I’ll have to cancel them, and I get anxious and distressed about it. Mindfulness helps me to get out of my head, out of all of those thoughts, and into my body so I can pay attention to what I’m feeling. When I do that, the anxiety and the distress reduce.”
LIVING WITH A long-term condition such as MS gives rise to a whole host of other issues, such as insomnia, anxiety and depression - all of which affect our well-being and our relationships with others. The mindfulness skills of awareness and kindness help to reduce those other issues by developing the ability to be more aware of your body, thoughts and emotions and to be more present, more in the moment. You learn these skills through meditation and other short, everyday exercises that you can do at any time. On the one hand it’s very simple – you practice being aware of your body and your breath in the moment – but it’s also very powerful in its effects. For most people the effects are felt very gradually, over a period of time, but you will notice them and others in your life will too. Mindfulness will not get rid of MS but it can help you to have a better quality of life while living with MS.
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Mindfulness helps me to get out of my head, out of all of those thoughts, and into my body so I can pay attention to what I’m feeling, moment by moment.
Fidelma Farley is a Breathworks mindfulness teacher who teaches mindfulness to anyone dealing with chronic pain, a long-term health condition, or stress. She has led courses and workshops for MS Ireland since 2008 and also sees people on an individual basis. See www.breathworks.ie, or ring 087 683 4717 for more information.
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TREATMENTS
Physiotherapy:
The accessible drug for improving mobility in MS Bláthín Casey, MISCP (BSc Physiotherapy) is a chartered physiotherapist and Research Assistant on the Activity Matters project, a project developing a web and paper based resource for people with MS to enable them to become more active. RECENT CHANGES TO the accessibility of the mobility enhancing drug Fampyra have left people with MS availing of the treatment reeling, and understandably so. Fampyra boasts the power to improve mobility levels and quality of life for up to a third of people treated with the drug. However, I, as a chartered physiotherapist believe I can be a possible voice of hope. I want to let those of you affected by the current changes know about, arguably, the most accessible drug for improving mobility limitations for people with MS in this country. Want to take a wild guess at what this drug is? Yes, physiotherapy! So what exactly is physiotherapy? Physiotherapists aim to improve movement and other body functions (strength, balance, etc.) for people with MS and do so mostly through the form of exercise. Within the current MS Ireland structure, physiotherapy mostly carried out through group exercise classes run via their Regional Offices and voluntary Branches. The exercises carried out in the classes vary depending on current activity and disability levels but generally encompass a strength, aerobic and flexibility component. Physiotherapy can also be offered on a one to one basis for those that may not be in a position to attend a group exercise class. As a chartered physiotherapist, it may be suggested that I am being biased in suggesting physiotherapy as an alternative to drug treatments for improving mobility in the lives of people with MS. However the evidence speaks for itself. There has been a shift from a time where people with MS were told not to exercise, to one where there is an ever increasing body of evidence appearing to suggest its benefits - both at national and international level. Think
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about it for a minute, doesn’t it make sense? In order to be mobile and deal with the physical demands of everyday life, we require a combination of aerobic fitness and strength. Physiotherapy can offer a safe pathway to gaining improved aerobic fitness and strength and thus in turn improve mobility limitations. In Ireland, collaboration between MS Ireland and the University of Limerick (UL) ignited our own national body of evidence for physiotherapy classes - Getting the Balance Right. This research, carried out by Dr Susan Coote and her team at UL, concludes that community-based exercise classes, including physiotherapy-led classes, provide evidence for exercise having a positive effect on the physical impact of MS in those with minimal gait impairment (ie people who use at most a unilateral support to walk outdoors). The research showed that participants of the physiotherapy classes improved their walking distance and reported reduced fatigue. Both of these findings are ultimately linked to improving one’s mobility. However, a finding of note by Dr Coote and colleagues was that once participants stopped attending the exercise classes (lasting ten weeks), these improvements were not maintained. The reason as to why these benefits were not sustained may be attributed to the fact that the physiotherapy classes had a structured and peersupport component which was eliminated once the classes ceased. A new project, in partnership with MS Ireland and funded by the Health Research Board (HRB,) is currently underway in UL where Dr Coote and post-doctoral researcher Dr Sara Hayes hope to discover how/if the benefits of exercise witnessed in the Getting the Balance Right programme can be maintained in the long-term. We know that physiotherapist-led exercise classes have physical benefits (ie - improving mobility) for people with MS but, of course, there are still gaps in the research for the definite benefits of these classes. Can benefits be maintained in the long-term? Can these benefits be witnessed in those with an increased gait/walking impairment? Although these questions have yet to be answered, we do know one thing - physiotherapy is an accessible treatment option in this country. Let’s avail of it! After all, mobility matters for people with MS.
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TREATMENTS
Relationships, Sex & MS
Go with the flow! Mary Leonard, MS Ireland Midlands Regional Community Worker, sheds some light on a seldom discussed topic – relationships and sexuality. An important part of a relationship, sex and intimacy can be affected by MS but, together with your partner, there are ways to move passed this so read on and get informed. “It’s an issue for me but I’ve never spoken about it to anybody.” “It’s bad enough having MS, are we supposed to be ‘non-sexual’ as well?” “We didn’t know where to go for help.” “Sexual problems have never been mentioned by my neurologist or GP.” These are just some of the comments made by people with MS in relation to sexual problems. It is disheartening to see that the issue is still not being addressed at neurology clinics. On the other hand, MS Ireland is doing its bit in highlighting sexuality and MS. Across Europe, groups for young people with MS are asking the questions and making it acceptable and normal to consider the effects of MS on sexuality.
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MS has the potential to impact significantly on sexual functioning. For men this can lead to problems with erectile functioning, absence of orgasm, change in sensations (reduced sensation or hypersensitivity) and problems with ejaculation (takes longer or doesn’t happen at all). Retrograde ejaculation is also more common in men with MS (this is where ejaculation occurs but it goes back into the bladder rather than out through the penis). Premature ejaculation may also occur-although this is also a very common problem in the general population. The problems women with MS may face include change in sensations (as with men), decrease in vaginal lubrication and absence of or difficulty reaching orgasm. A problem most prevalent for both men and women is loss of or decrease in sexual desire. While this may be directly associated with nerve damage, it is more likely linked to different factors, which may or may not have anything to do with MS. Common symptoms of MS, such as fatigue, make it difficult for people to feel excited about and energetic enough for sexual activities. Bladder and bowel incontinence affect some people with MS and can have a negative impact on sexual activity. Such problems can also affect self-esteem and confidence, leading to a negative perception of ourselves as sexually attractive beings. Other problems which may accompany MS for some people, such as depression and anxiety, can affect sexual desire and sexual functioning. In considering sexual problems in the MS population, we must bear in mind that such problems may be associated with factors other than MS which are varied and too numerous to mention here but can include relationship issues, other medical conditions, medications, alcohol and recreational drug use, time constraints and work pressures. Indeed, let’s not overlook problems associated with aging!
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TREATMENTS Treating Sexual Problems SINCE VIAGRA BECAME AVAILABLE for erectile dysfunction, men are being encouraged to discuss such problems with their doctor. There are a number of alternative drug treatments to Viagra now available and your doctor would advise. Drugs are not always the solution and the most appropriate treatment would depend on the likely causes of the problem. As there are so many variants with sexual problems, issues such as relationship, health, lifestyle and medication need to be taken into consideration when choosing the most appropriate help. Your doctor may refer you to a counsellor or a psychosexual therapist to help the individual or couple explore ways to improve the situation. A referral may be made to an urologist, especially for men, for further assessment and advice.
LETS TALK! IGNORING THE PROBLEM will not make it go away! It’s surprising how many couples avoid talking to each other about sex and intimacy. Feeling embarrassed is probably the main reason but sometimes people are afraid of upsetting their partner. Not talking can lead to misunderstanding and assumptions that their partner no longer finds them sexually attractive.
ASK THE QUESTION TALK TO HEALTH professionals - your GP, neurologist or nurse can all offer advice. They need to be asked the questions and while they may not always have answers, help is usually available. This may be in the form of information, referral, medication or counselling.
EXPECTATIONS EXPERIMENT Touching in a different way can help overcome problems associated with sensation. Be guided by your partner with regard to how and where they like to be touched. Touching in itself may become the main focus of intimacy if sexual intercourse is no longer possible or desirable.
See www.ms-society.ie or call our confidential MS Info Line on 1850 233 233 for more information on sex, relationships and MS. www.ms-society.ie
As our lives change and evolve so too should our expectations. Many relationship problems and sexual problems have their roots in expectations that are not reasonable. In fact, having expectations can have a negative physiological effect on sexual performance. It’s best to leave expectations aside and have preferences instead. For example, thinking “It would be nice if I orgasm on this occasion” rather than “I have to….” This approach can reduce stress and anxiety often accompanying such problems, especially “performance issues”. Remember, there is far more to enjoyable sex than just intercourse. There is far more to lovemaking than just sex!
It’s bad enough having MS, are we supposed to be ‘non-sexual’ as well?
ADJUST WHATEVER THE LIKELY causes of the problem, be prepared to do things differently. This could be choosing times for intimacy when you’re not so tired. It could also mean that you learn practical ways to manage catheters so that sexual activity is still possible.
USE YOUR HEAD The power of the mind is often overlooked when exploring ways to improve sexual enjoyment. Using your imagination to enhance pleasurable sensations is within most people’s reach. This could be done by simply focusing on the sensations of touch and telling yourself that they are really nice and you are enjoying them. Negative thoughts can become associated with sexual intimacy (“I’m not attractive”; “It will hurt”; “I’m not interested”; “I will get nothing out of it”) While such thoughts may have been relevant at some stage in the past, perhaps they no longer need apply. However like any negative thoughts they can become a habit, kicking into our heads when sex is on the agenda. Learn your own ways to leave them aside; do not continue to entertain them.
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FEATURES
Why did I Skydive for MS?
MY WIFE HAS MS and walked the Women’s Mini Marathon for MS Ireland. She raised the money through family, friends and Facebook. A couple of days later a friend of hers tagged her in a post on Facebook about a charity skydive for MS and she showed me. Straight away I said I’d be up for it! So my wife rang and sorted the sponsorship card out for me. I had to raise €520 in just two weeks so I went to all my family and friends, local businesses and basically everyone that I knew. Thanks to all their support I raised nearly €900 euro!! I was so excited to do the skydive as it’s one of those things I’ve always wanted to do it. The morning arrived, we had to drive from Dublin to Offaly and I wasn’t nervous at all, just really excited. We arrived at the Irish Parachute Club and went into the office to sign the paperwork and it was only then the nerves kicked in. My legs where like jelly! I was the last to enter the plane and first to jump. Going up in the plane thousands of feet into the sky I got a bit more excited again and then the door opened and it was time – no going back now. The rush was unbelievable. Falling at 200km per hour was amazing. Just to sum up it was the best experience of my life and I can’t wait to do it again. Any advice to anyone who wants to do a jump for MS Ireland is just to go for it, it’s the best feeling ever and it’s for a great cause!
A Day in the Life of an MS Researcher Marcin Uszynski MSc. (Physiotherapy) MISCP, Bobath Therapist, PhD candidate. Marcin works as a Senior Chartered Physiotherapist in the Western Regional Office of MS Ireland. RESEARCH AREA MY MAIN AREA of interest includes neurorehabilitation, exercises and physiotherapy intervention for people with Multiple Sclerosis and use of technology as an adjunct to rehabilitation. I am also interested in psychometric properties of sensory tests in people with MS. My research emphasis is on the importance of sensory input in motor recovery in Multiple Sclerosis. The main aim of my proposed research is to determine the immediate and long-term effects of Whole Body Vibration on muscle strength, sensation, gait and balance in people with MS. WHAT MADE YOU WANT TO BECOME A RESEARCHER? I have considerable research experience from my MSc physiotherapy degree and from my 13 years of clinical practice. My desire to pursue a higher degree by research has been influenced by my natural curiosity and passion for broadening my knowledge. New technologies are increasingly being researched in the clinical setting and may be an essential component of health care delivery in
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the future. My ultimate goal is to significantly contribute to research and the clinical evidence-base in the area of MS and link technology with clinical practice. WHAT IS AN AVERAGE DAY LIKE FOR YOU? I work as a Senior Chartered Physiotherapist in the Western Regional Office of MS Ireland in Galway so my day is either spent in there providing one to one physiotherapy assessment and delivering physiotherapy intervention to people with MS or else I will be at the University of Limerick (UL). I am currently completing my third, hopefully last, year of my PhD by research course. My day could be very busy, starting with replying to emails in the morning followed by analysing data from a recent project and writing up different paragraphs of my papers. When I am in Limerick, I am meeting with my supervisors or with other members of the research team. Every day is different but I do believe that through my research work, I am helping people with MS and this is the most rewarding feeling.
www.ms-society.ie
MS CARE CENTRE
Now in it’s fourth year, our annual Friends of the MS Care Centre Corporate Lunch, held in the Four Seasons Hotel, Dublin on 16th May 2014, was a resounding success, with an outstanding €21,000 raised to support Ireland’s only dedicated respite and therapy centre for people with MS.
Thank you!
Caring for the MS Care Centre ENTREPRENEUR CONOR DEVINE showed us how he’s conquering his MS battle, as well as the business world. It’s safe to say Conor left everyone in the room a great deal more motivated and inspired than when they first arrived! He spoke of accessing your mind, the importance of exercise and nutrition in managing MS and opening yourself up to new possibilities following an unexpected event like an MS diagnosis. Conor had everyone smiling when he said that maybe one day MS will stand for Mystery Solved. We couldn’t agree more. Mary O’Rourke re-iterated what Conor had said about the importance of opening up one’s mind to new possibilities. She spoke of her past as a student and teacher and of the days she spent learning Latin poetry. One phrase she said always stuck with her and that was Carpe Diem, the Latin for “seize the day”. Mary said this was a strong belief to have for all people who live with MS as it means seizing the moment and living your life to the fullest. She spoke of the importance of living not in the past or the future but living in the present –
advice we could all stand to benefit from. After lunch was enjoyed, the lively auction took place and was overseen by David Herman of Herman Auctioneers. It was full of fun and laughter and, thanks to generous donations, we had some fantastic items up for grabs. The raffle was next on the agenda which turned into another auction due to the generosity of the recipients of the prizes! Congratulations to all the winners. We would like to say a sincere thank you to everyone who attended the event and supported our auction and raffle – we were delighted to share this wonderful day with you. Thanks to all the generous businesses and individuals who donated prizes, to the staff at the Four Season’s Hotel for the excellent hospitality and to our two guest speakers. A special thank you to the MS Care Centre Lunch Committee for all their hard work, David Herman of Herman Auctioneers for manning the auction and Sean Brosnan from Pixillume Photography for taking the photographs on the day.
To find out more about our MS Care Centre
www.ms-society.ie
call (01) 4906234 or see our
1. Conor Devine, Mary O’Rourke, Ava Battles & Miriam Taber (MS Ireland) 2. Natasha Ryan, Elsie Ryan, David O’Reilly & Mark Mitchell 3. Conor Devine during his talk 4. Anne-Marie McDaid & Sarah McCarthy website: www.ms-society.ie
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GET INVOLVED
We have something for everyone so however you plan to get active this year, get active for MS! Jump for MS! Skydive, 4th October A GIGANTIC THANK YOU everyone who jumped for MS in June. If you missed out and you’re looking for the ultimate adrenalin rush join us at the Irish Parachute Club, Offaly this October as we jump for MS services. Sign up today!
Be an MS adventurer! Run for MS
Killarney Adventure Race, 4th October As the OFFICIAL CHARITY of the 2014 Killarney Adventure Race we are delighted to say that all Team MS Ireland participants get €10 off race entry. This race gives competitors the chance to run, hike, cycle and kayak some of the most dramatic, breath-taking and remote scenery in the world - don’t miss out.
SSE Airtricity Dublin Marathon, 27th October Following on from having our biggest ever team run the highlight of the Irish marathons calendar in 2013, we’re looking forward to welcoming even more athletes onto Team MS Ireland. Set your personal best goal and sign up now to run the Dublin Marathon for MS!
Go to Hell and Back for MS! Hell & Back TITAN, 13th September This one is not for the faint-hearted! It’s all about pushing yourself to the absolute limits so if you’re looking for a real challenge this is for you. Endurance challenges like Hell & Back are fast becoming one of the most popular ways to get active for MS so grab a gang and register now.
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Thank you, ladies! This June saw a record-breaking 600 amazing ladies join Team MS Ireland in the Flora Women’s Mini Marathon, making 2014 our biggest year to date. THANK YOU from all of us here at MS Ireland – your support means the world to us and we had so much fun meeting old friends and new throughout the day. Special thanks to our ambassador Caroline Morahan for joining our team at the start line. See you all in 2015!
www.ms-society.ie
GET INVOLVED
Sign up for all treks and challenges at www.ms-society.ie.
Climb for MS! WE ARE EXCITED to announce two brand new challenging experiences in 2015. We’ve teamed up with our friends at Earth’s Edge to bring you treks to two of the world’s most iconic – and endurancetesting – mountains. There’s never been a better time to join Team MS Ireland and tick off your bucket-list!
Camino Trek, 30th May – 9th June 2015 THE CROWN JEWEL of Spanish walking trails, the pilgrimage to Santiago de Compostela began as an act of faith as Europeans crossed Spain to visit the sacred tomb of Saint James. One thousand years later, the Camino continues to draw the spiritual as well as the traveller looking to enjoy its colourful past which is still evident along the route. We then follow the famous yellow arrows through tiny sun swept villages past majestic cathedrals, straight through red poppy fields and the lanes of enchantment in Galicia, all leading to the mystical city of Santiago de Compostela. This is an endlessly enjoyable adventure along one of the oldest and most beautiful pilgrim routes in the world. One step on the road to Santiago is several steps back in time following in the footsteps of thousands, spanning 11 centuries. There is no escaping the strange yet comforting feeling that you are never alone on the Camino.
Funds raised through our treks and challenges help to support our community-based services for over 8,000 people with MS right across the country. Thank you for joining Team MS Ireland, welcome to our MS community!
Kilimanjaro, 8th – 18th July 2015 TREK THE HIGHEST free standing mountain in the world - Kilimanjaro. While this is a tough challenge, trekking seven out of your trip’s eleven days, it is spectacularly rewarding. You will trek along the beautiful Machame route, the most scenic route to the summit. The sense of overwhelming achievement from the roof of Africa makes this truly unforgettable challenge.
Fundraising Target: €4,950 (incl. €300 deposit)
Everest Base Camp, 9th – 26th September 2015 EVEREST BASE CAMP sits proudly at 5364m/17,598ft. With twelve days of trekking on the world’s highest mountain, Mount Everest (8848m), your itinerary has been designed with acclimatisation in mind making the trip more enjoyable and giving everyone the best chance to reach our destination. The scenery is truly breath-taking - with mixed forests, flower filled meadows, glaciers, rivers and spectacular mountainous panoramas throughout. Located in the Khumbu region of eastern Nepal, our route takes us through Sherpa villages, bazaars and Buddhist monasteries.
Fundraising Target: €4,950 Sign up for all treks and
(incl. €300 deposit)
challenges at www.ms-society.ie. www.ms-society.ie
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CE SCHEME
MS Ireland runs a number of Community Employment (CE) Schemes throughout the country. One of our most successful programmes operates through our Western Regional Office. Kevin Larkin, CE Scheme Supervisor, explains the benefits of the scheme in providing support for people with MS.
k r o W m Tea in the West
THE MS IRELAND CE Scheme, funded by the Department of Social Protection, affords the opportunity for those seeking training and employment in the areas of Care and Support in a supervised environment, to the benefit of people with MS. Training is provided and a participant’s time on the CE Scheme is limited, for the most part, to one year. Currently courses are run by the MS Ireland Western Regional Office to FETAC Level 5. Upon completion of course, certificates are awarded to the participants confirming their skills as Physiotherapy Assistants and in other vital areas such as Patient Moving & Handling, Health & Safety, First Aid, Hydro-therapy and Child Protection. In the West, the MS Ireland CE Scheme is supervised by Kevin Larkin, working alongside Aidan Larkin, Regional Co-Ordinator, John McDonald and Mags Ryan, Community Workers and Marcin Uszynski, Senior Neuro-physiotherapist. We have a Team which consists of one Administration Assistant and 16 Outreach Workers who between them cover a vast geographical area – Galway, Mayo and Roscommon. Each team member strives to support and assist in the care of people with MS, either as part of a weekly physio class or by visitation in their own home, or nursing home. The role of the Outreach Worker is wide and varied. Presently, a weekly visit to a person with MS in their home could consist of companionship, helping out with light household chores, advocacy, provision of information and delivery of a personalised exercise program as prescribed by our Neuro-physiotherapist. The team provides 42 individual sessions of physio per week to clients during the course of these home visits; a service which is provided without any cost
PAGE 26
to our clients. The Outreach Workers provide an important l ink between the person with MS and the Regional Office. The Outreach Worker’s role is vital to the continued development of this CE Scheme – their observations and feedback assist in the Regional Office’s strategic plan for the months and years ahead. Physio classes are run by MS Ireland each week in Ballinalsoe, Roscommon, Tuam and Galway – the Outreach Workers are an integral part of this vital activity. Hard work combines with a fun environment to ensure that physio programmes are followed, but allowing for a bit of social activity at the same time! The team supports the work of MS Ireland on a continuous basis, helping with events, fundraising, updating the database and working closely with the MS Ireland voluntary Branches in the region. The MS Ireland Western Regional Office CE Scheme is constantly evolving – we need to make sure that the needs of our clients are met, in the best possible way.
www.ms-society.ie
EMSP
Defeating MS Together - an update to the European Code of Good Practice DEFEATING MS TOGETHER sets out 12 Calls to Action, under a Core Principle, and 5 Action Areas, looking forward to another decade by setting out a clear ten-year timeline for these actions to stress the urgency of the calls and help guide progress. As a member of the EMSP, MS Ireland actively supports Defeating MS Together and we will work with the EMSP to ensure these actions become a reality. Core Principle - Empowering People with MS Underpinning all the action areas is the core principle and
fundamental requirement to support and enable the participation and empowerment of people with MS. It is essential that all people with MS, and their carers, are given the opportunity to be involved in decision making about their treatment and care and to feed into research and policies relevant to the condition. In addition, better partnerships between people with MS, the organisations that represent them, healthcare professionals, researchers, and policy makers are needed to foster effective collaborations and drive improvements to better meet patient needs in real-world scenarios.
Timeline for Action CORE PRINCIPLE Empowering People with MS CALL 1 By 2015, all those who work with people with MS, and their carers, (whether health or social care professionals, researchers, employers or policy-makers) should positively encourage their meaningful involvement and provide appropriate information and support to enable them to take part in decision-making that ultimately affects their lives. CALL 1 By 2015, all healthcare professionals must recognise the information needs of people with MS, and their carers, and provide honest and useful information about their condition, prognosis and treatment, therapies, rehabilitation and support available to them.
ACTION AREA 3 Focusing MS Research CALL 7 By 2022, the EU and other research funders must allocate particular attention and resources to research into progressive MS. CALL 8 By 2024, researchers, research funders and MS organisations across Europe must collaboratively develop a series of shared research and data management strategies, underpinned by central EU resources as well as national level funding.
www.ms-society.ie
ACTION AREA 1 Ensuring Access to MS Treatment, Therapies, Rehabilitation and Services CALL 3 By 2018, all people with MS across the EU must be able to access the recommended treatments, therapies, rehabilitation and skilled, professional support to enable them to be as well as possible for as long as possible and to be able to contribute to society. CALL 4 By 2020, healthcare commissioners and providers across the EU must fully recognise the importance and value of MS nurses and ensure there are adequate numbers employed to provide appropriate support to all people with MS who would benefit.
ACTION AREA 4 Enabling Employment, Job Retention and Education CALL 9 By 2018, all employers and education providers must be aware of legislation and policies requiring the need to provide support for people with chronic conditions, such as MS, and take steps to ensure this provision for all those who need it. CALL 10 By 2022, all policy-makers and employers must recognise the need for greater flexibility within social, disability and workplace benefits to account for the fluctuating needs of people with relapsing remitting MS.
ACTION AREA 2 Better Understanding and Treatment of Paediatric MS CALL 5 By 2018, all children and adolescents with MS across the EU, and their families, must be able to access the recommended treatments, therapies, rehabilitation and skilled, professional support to enable them to cope with their diagnosis, achieve a good quality of life and to take part in society. CALL 6 By 2020, the EU and other research funders must provide increased resources for, and researchers must design, more targeted clinical trials to identify the most effective treatments for children and adolescents with MS.
ACTION AREA 5 Supporting and Empowering MS Carers CALL 11 By 2016, all those who work with people with MS and their carers must take the particular needs of carers into account and offer support where appropriate. CALL 12 By 2016, the MS community should develop and promote a resource (such as an online hub) enabling MS carers from across the EU to communicate with each other, share their experiences and develop a voice to be able to express their particular needs and preferences.
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RESEARCH
High hopes for cannabinoids
in MS
DR ERIC DOWNER, Ph.D. is Lecturer and Principal Investigator at the Department of Anatomy and Neuroscience in University College Cork.
anti-inflammatory properties in peripheral cells from MS patients. This is important in not only improving our understanding of peripheral inflammatory changes that occur in individuals afflicted by MS, but may indicate how cannabinoid-based therapy, such as Sativex, may act to control the progression of the disease. Sativex is a combination of two plant-derived cannabinoids, THC and cannabidiol, which at the time of writing has been approved
CANNABINOIDS ARE THE ingredients found in the Cannabis
in over 20 countries for the relief of spasticity in patients with
sativa plant. The most extensively studied cannabinoid
MS who have not responded adequately to other treatments.
is delta-9-tetrahydrocannabinol (THC), which is the main
Although Sativex dampens spasticity in MS, the specific
ingredient underlying the psychoactivity associated with
mechanism by which this drug acts is uncertain. However,
cannabis use. Further important cannabinoid components
large bodies of research evidence back-up the therapeutic
in the plant are cannabidiol and cannabinol, which make
potential of both plant-derived and endogenous cannabinoid
up proportions of the plant extract, but are not major
compounds, particularly in relation to the pathogenesis of
contributors to the overall psychoactivity of cannabis use.
MS. Indeed, cannabinoids can regulate the survival of nerve
In addition to these “plant-derived” cannabinoids,
cells, possess anti-inflammatory properties, and can dampen
a second major cannabinoid group incorporates the
the infiltration of immune cells into the nervous system, and
endogenous cannabinoids, or endocannabinoids, of which
hence reduce immune-mediated damage to nervous tissue.
the most extensively studied are anandamide and 2-AG.
This may be promising for MS, but at present more research
Endocannabinoids are produced throughout the human
is needed, to determine the specific effects of cannabinoids
body, and abundant levels are detected in both the nervous
in humans, and decipher exactly what happens to the
and immune systems. Both plant-derived and endogenous
endocannabinoid system in an individual with MS.
cannabinoids elicit diverse effects on the brain and on
Cannabinoids are certainly unique compounds, and
peripheral cells, tissues and organs, and these effects are
research supports their use as novel treatments. However,
mediated by cannabinoid receptors (CB1 and CB2), the
it is important to emphasize that Sativex is not cannabis;
expression of which has been determined on the cells of the
it is an oromucosal pump spray containing a combined
nervous and immune systems.
cannabinoid medicine constituted by the two plant-derived
The cannabinoid system is linked with all aspects of
cannabinoids, THC and cannabidiol in a 1:1 ratio. Interestingly
human physiology, and much research evidence indicates
clinical trial evidence for Sativex suggests that intoxication
the therapeutic potential of this system. At the Department of
scores are low in patients. This is vital, as in order to gain
Anatomy and Neuroscience in UCC our research, conducted
broad support, cannabinoid-based therapies need to kick
in collaboration with Dr. Orna O’Toole (Mercy University
the drug of abuse stigma to the curb by remaining devoid
Hospital), indicates that blood cells isolated from patients
of the classic cannabis-related psychotropic effects. With
with MS, when compared directly with cells from healthy
more research, cannabinoid researchers are coming closer
individuals, behave differently in terms of the inflammatory
to understanding and harnessing the beneficial effects of
balance in the cell, which is heightened in MS. Interestingly,
cannabinoids (plant-derived and endogenous), and on the
the lab’s data demonstrate that plant-derived cannabinoids
way to doing so, bypassing the psychoactivity we classically
may uniquely target these inflammatory events, exerting
associate with cannabis abuse.
PAGE 28
www.ms-society.ie
RESEARCH
Falls in people with MS – causes, attributions and intervention needs IT IS KNOWN that more than 50% of people with MS
not necessary for you to be at home, it is advised that you
experience a fall within a 6 month period. However, there are
choose a quiet and private place to conduct the interview.
currently only a few treatments to prevent or reduce falls for
The interview will not be recorded; the student will fill in your
people with MS. Dr Susan Coote, who leads this research,
responses on a data entry sheet throughout the interview.
is part of an International MS Falls Prevention Research
You are not required to answer any questions that you don’t
network that will develop of a falls prevention programme
want to and you may withdraw from the study at any stage.
for people with MS. We want to find out about your MS, your falls and what you would like to be included a falls
Who can participate?
prevention programme. This will help us to make sure that
People with MS (over 18 years of age) who can walk at least
the programme is based on the needs of the people who will
10 metres with or without an aid and have experienced a fall
take part in it.
within the last 3 months can take part in this study.
What will I have to do?
What do I do now?
You will be taking part in a one to one telephone interview
If you would like to take part in this study please contact the
with a researcher from the University of Limerick. The
research team:
interview will last between 25-30 minutes. Questions will include simple yes/no questions, multiple choice, open
Dr. Susan Coote Tel: 061-234278 Email:
[email protected]
questions and others will be based on a scale. Although it is
Eve Geraghty Email:
[email protected]
Do you have Multiple Sclerosis? Are you living near Galway, Limerick or Cork?
What will I have to do? The study will involve an initial physiotherapy assessment followed by a 10-week group exercise and education programme (in a community setting in Galway, Limerick or Cork). Participants will be asked to attend six 1.5 hour
If so, you may be suitable to take part in a new free 10-week physiotherapy-led exercise and education intervention. MS researchers at the University of Limerick, in collaboration with colleagues in the US, MS Ireland and the Health Research Board have developed a new exercise programme that aims to improve strength and walking ability among people with MS.
exercise sessions and 3 follow-up assessments after programme completion. This study starts in September 2014.
Who can participate? People with MS (over 18 years of age) who are able to walk independently without a mobility aid and are currently not physically active, are invited to take part.
What do I do now? If you would like to take part in this study please contact Dr. Susan Coote: Tel: 061-234278 Email:
[email protected]
www.ms-society.ie
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REGIONAL NEWS
New Jacuzzi at the MS Care Centre IN APRIL 2014 the MS Care Centre launched our new Jacuzzi - the only model of its kind in the country - thanks to the overwhelming generosity of Postmaster David Dunne and his partner Liz Byrne who have fundraised for the Centre the past five years. Costing €24,000, the money took 72 post offices in the Dublin area two years to raise through the Gigantic Easter Egg Raffle. Thank you to David, Liz and all the staff at the post offices who took part.
LOBBYING POLITICIANS IN THE MID WEST OUR MID WEST Regional Office held a Lobby your Politician lunch-time event on 15th May where people living with MS had the opportunity to speak about their needs and voice their concerns to councillors standing for local election.
tern van Noord, In am with Aart ion ct Se e MS Ireland Te ad omic and Tr on Ec ch ut D at the THE DUTCH AND Spanish Embassies kindly invited MS Ireland to attend the screening of their World Cup match on 13th June. The MS team sold tickets for fantastic raffle prizes raising a wonderful €782. Thanks to Dutch Ambassador, Paul Schellekens and Spanish Ambassador, Javier Garrigues for hosting us.
Register your interest! South Region: There will be a 10 week Exercise Programme commencing in late September and a Newly Diagnosed seminar in October. Please contact Carmel or Gillian to find out more: (021) 430 0001 or
[email protected].
Wellness Day THE MIDWEST NAI Wellness Day took place in April, giving representative organisations the chance to come together to offer an opportunity for people with neurological conditions and their families to learn about and participate in a variety of activities which reduce stress and support a healthier lifestyle. Workshops included diet and exercise, music therapy and caring for carers. A great day was had by all, thanks to everyone who came along.
South East Region: There will be a Newly Diagnosed seminar taking place in October. Please call Úna to find out more: (056) 777 7771 or
[email protected]. Mid West Region: Our Limerick Branch will be holding Therapy Sessions in September/October. Please contact Carol or John: (061) 303 802 or
[email protected]. North West Region: A 10 week Exercise Class will be starting up in Glenties. Please contact Geraldine or Catherine: (074) 912 5017 or
[email protected].
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1: Martina McNamara, Anne Dunne, Margaret Gunning 2: Billy Rice (Parkinsons Ireland), Carol McKenzie (MSI), Anna Kelly (Epilepsy Ireland), Alan O’Connell (ABI), Elisa O’Donovan (Headway)
www.ms-society.ie
BRANCH NEWS
VOLUNTEERS AT OUR LEITRIM BRANCH CELEBRATE WORLD MS DAY! Volunteers at our Leitrim Branch celebrate World MS Day! Back L-R: Lily Fitzpatrick, Dorothy Dorran, Marie McGuinness, Monica Sharpley, Danny Butler, Margaret Egan. Front: Sharon Kilkenny, Kathleen O Connor.
Curlew Warrior 10K Run 15th June saw our Roscommon Branch hold their fourth annual run. The Branch says, “We were blessed with a fine day and great support by all the local people from Boyle, where the event was held.” Branch member Pat Burke led over 100 runners past cheering volunteers and spectators. The awards ceremony saw the presentation of the Ann Byrne Memorial Cup, a touching tribute to person with MS Ann, mother of the race’s organiser Tony, to Phillipa Duggan and Anne Marie Hayden. The award was set up for people with MS who persevered to complete the run. Thanks to everyone who kindly helped out on the day.
GALTEE CHALLENGE SUCCESS FOR LIMERICK BRANCH The hugely popular Galtee Challenge took part with over 400 people turning out on the day to support our Limerick Branch. It was another great day and night with a free barbeque in Doon. The Branch would like to thank everyone who came along!
mily ith a Texas fa Tom Hayes w w in the alk! who took part
South Dublin Branch re-launched
Running for the West Cork Branch! Catherine Tobin, who participated in the Cork City Marathon, presented her cheque to Rosellen, Treasurer of our West Cork Branch. The Branch would like to thank Catherine for her brilliant fundraising efforts! Back L to R: Anna Hurley, Mary O’Donovan, Michael Cronin, Frances Barry, Catherine Tobin, Rosellen Healy, Paul Casserly (Chairman), Grace Harnedy. Front L-R: John O’Brien and Marie O’Connell (Secretary).
www.ms-society.ie
Happily our South Dublin Branch was re-launched on 27th May. The Branch Committee are: Mary McKeon, Geraldine Shortt, Patricia Delaney, Anne King, Ann Meehan, Cathryn Murray, Kathryn Moroney, Anne Restan. Already the Branch have been busy fundraising and putting together a string of future events so we wish them the best of luck. If you are a former member and would like to rejoin or a new person interested in getting involved, please get in touch with Mary McKeon at
[email protected] or phone (01) 678 1600.
PAGE 31
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GET INVOLVED
Drive-in Bingo ARRIVING IN CARS and buses the first drive-in bingo in Laois kicked off in Portlaoise GAA, Rathleague this July. The final two of this trio of exciting events will take place in autumn so all you have to do is play the game, honk the horn and flash the lights if you’re a winner! All funds raised on the day will be split between three local organisations, including our MS Care Centre. Contact Annette on 086 839 3964 or email
[email protected].
Christmas cards, €6 per pack of ten SPREADING THE CHRISTMAS cheer and supporting MS Ireland at the same time couldn’t be easier! Christmas cards landing through your post box signal the start of the season. See below for our range of Christmas cards to send to your loved ones at home and abroad. With two designs to choose from there’s something for everyone. Our beautiful silver tree decorations have a space in the middle for a photo so this personal touch makes it extra special.
MS Ireland 2015 Calendar THIS STUNNING CALENDAR is an ideal way for Branches to avail of an opportunity to raise funds. Calendars can be purchased at €3.50 each and sold at €6.99, with proceeds shared evenly between Branches and National Office. Order yours now from the team at National Office. Email:
[email protected] Tel: (01) 678 1600
Getting married? MS Ireland wedding favours are a great alternative to traditional options and it’s a simple yet memorable way to show your support and raise money for local services! Choose from elegant guest table cards and personalised chocolates. Call the team for more information on how to make MS Ireland part of your special day Email:
[email protected]. Tel: (01) 678 1600
Christmas tree decorations,
€2 each Check off your Christmas list early, order now from the team at National Office Email:
[email protected] Tel: (01) 678 1600
THANK YOU! We would like to say THANK YOU to everyone who took part in our summer raffle this year. Whether you sold some books, bought a ticket or just spread the word, thank you! We are delighted to announce the winners of the MS Ireland Summer Raffle 2014. 1st Prize - €2,500 K. Dunne, Co. Kildare 2nd Prize - €1,000 J. Ryan, Co. Leitrim 3rd Prize - €500 D. Doyle, Dublin
4th Prize - €350 P. Hamill, Co. Louth 5th Prize - €250 M. O’Donnell, Co. Tipperary
Congratulations to all our winners! The draw was conducted at our National Offices on Friday 11th July 2014 at 12pm and was independently supervised by a representative from our Auditors, Deloitte and Touche Accountants.
www.ms-society.ie
PAGE 33
ACCESSIBILITY
AGRABILITY IRELAND
– helping farmers with disabilities
In the 2002 Census, 20,000 farmers reported a disability, with more than 13,000 of these being over 65 years of age. According to Teagasc, a negative impact on farm business is associated with 93% of farms where the farm operator is disabled. Family farm income is 15% lower on farms reporting a disabled operator. Many farmers rely on off-farm employment to supplement their income, particularly on smaller enterprises. This income is also affected by disability, being lower for farm operators and their spouse when the farm operator reports a disability, compared with operators not reporting a disability. Although there is no evidence that farmers are at increased risk for multiple sclerosis, when MS does occur, it can increase the difficulty of performing essential tasks. These can include accessing and using large vehicles, handling powerful and unpredictable animals, using dangerous chemicals, working near noxious fumes, operating chain saws and other power tools, working at heights or in confined or isolated spaces and in cold, wet, hot, or dusty environments. In any of these situations, MS can increase the risk of death, injury or economic loss to the farmer and their dependents. While the hazardous nature of farming is acknowledged and its disability rates are widely reported, Irish farmers with disabilities have yet to be provided with the specialised technical assistance they need to keep farming safely and efficiently. Farmers with disabilities often find workarounds or modify equipment to get the job done. So focused are they on continuing to work that they may unintentionally increase their risk of injury through unsafe solutions. These modifications might include welding extra access steps to vehicle ladders, using a tractor bucket as a person lift, or skipping a difficult step in a safety process. A new initiative called AgrAbility Ireland has been established to help farmers and rural workers with disabilities to keep farming safely, efficiently and productively. The aim of AgrAbility Ireland is to help farmers with disabilities to achieve or maintain a high quality lifestyle by enabling them to overcome physical, psychological or attitudinal barriers to success and satisfaction. It does this by providing technical support and information as needed on a case-by-case basis. AgrAbility Ireland can assist with any kind of disability or injury, including arthritis, back pain, MS, amputations, vision impairment, hearing loss, spinal cord injuries, age-related problems, cardiovascular and brain disorders and so on. Partnering with other agencies, AgrAbility can help farmers dealing with depression and other mental health problems. AgrAbility consultants have helped farmers with MS to overcome difficulties such as dressing for work, handling bulky or heavy loads, using computers, manipulating keys and handles, operating power tools or implements and positioning farm animals for treatment.
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For farmers who want to find equipment to solve an immediate problem, the AgrAbility website links to a ‘Tool Box’ of solutions that have been evaluated for safety and potential applications by agricultural engineers and disability specialists. If this doesn’t provide the answers, AgrAbility will research possible solutions for the farmer. AgrAbility Ireland is part of an international network, so is rarely stumped by any problem. AgrAbility’s farm disability specialists, counsellors and engineers have helped many thousands of farmers over the past four decades and so a problem which is new to a client may have been solved many times before. A disability can be devastating both physically and emotionally. For this reason, newly disabled farmers may want to connect with farmers with similar disabilities, not only to gain tips and insights, but also for encouragement—this is called ‘peer support.’ The AgrAbility peer support network includes farmers who communicate with each other privately using email, telephone or face to face, depending on their location.
Irish farmers with disabilities have yet to be provided with the specialised technical assistance they need to keep farming safely and efficiently. Such is the frequency of disablement in farming that it is not usually difficult to connect people by type of disability and farm, so that the two farmers will have greatest understanding of each other’s situation. If a farmer would find a farm visit helpful, AgrAbility can provide this service, offering a chance for the farmer to demonstrate their difficulties and to explore possible solutions with specialists in farming with a disability. As a new non-profit initiative, farm visits are subject to available funding. AgrAbility does not provide equipment or charge commissions and its services are free to farmers. It is currently exploring funding opportunities with disability charities, government and farming groups in order to establish a national network of farm disability specialists.
For more information visit the AgrAbility Ireland
www.agrability.org.uk call 086 074 7119.
www.ms-society.ie
ACCESSIBILITY
Accessible travelling around the world Martin Heng is the Accessible Travel Manager & Editorial Adviser at Lonely Planet:
[email protected]. I STARTED INDEPENDENT international travelling early in life, with a bike trip to Brittany from Birmingham when I was 16. Since then I have visited dozens of countries and spent the best part of a decade in the 1980s and 90s just travelling in Asia and Central America –lucky me! Although some trips – bike rides through the South Island of New Zealand and Hokkaido in northern Japan – required preplanning and booking of accommodation, the vast majority of travelling I did at this time was unplanned. I’d land in a country, armed with my Lonely Planet guidebook, and be guided by that and the advice of fellow travellers I met on the road. I’d often not know where I would be the following week and, this being before the age of the Internet and social media, my poor family back in the UK would have little idea of where I was until a letter or postcard landed in their letterbox! This is the biggest difference when travelling with a disability: now there’s little room for spontaneity and planning has become paramount for all sorts of reasons. First and foremost, for me at least, completely independent travel has become impossible and, even when travelling with my family, I need to take a carer with me or to hire one locally. Finding the right person – someone who knows your daily routine with whom you’ll be comfortable spending a lot of time and who is also available – can be a challenge. Next most important is to find and book accessible accommodation. In many developed countries this is less of a problem due partly to the existence and enforcement of building codes and standards, and partly to the financial ability of establishments to modify their rooms to meet the needs of disabled travellers. Increasingly, too, tourism suppliers are beginning to cotton on to the fact that 1 billion disabled people in the world, together with their travelling companions, make up a sizeable market! Even so, the stock of accessible hotel rooms is limited and the likelihood of finding a good one at a reasonable price is higher the earlier you book. But it’s not enough simply to find an accessible hotel room: if the neighbourhood, sights, public transport system and other infrastructure where you’re staying are not accessible then you’ll be marooned! This may be okay if you’re staying in a resort, but not if you are interested in real travelling: immersing yourself in the local culture, enjoying the local cuisine and engaging with local people. Luckily, it’s not just
www.ms-society.ie
Tourism suppliers are beginning to realise that 1 billion disabled people in the world, together with their travelling companions, make up a sizeable market! individual businesses that are realising the economic potential of the accessible travel market: regional and national tourism bodies are also waking up to the fact. The UN World Tourism Organisation –sponsored inaugural accessible tourism summit, to be held in Montréal at the end of October, recognises this in its title: Destinations for All1. Again, in more developed countries, particularly, most major tourist attractions – museums, art galleries and so on – have become much more accessible in recent years. Although this may not be the case in less-developed countries, the experience of many disabled travellers is that the willingness of local people to help easily makes up for the lack of infrastructure. Next up is transport. Different airlines and countries have different regulations regarding transporting passengers with disabilities, and in particular those travelling with mobility devices. Some, such as Singapore Airlines, are very progressive; others, even in Australia, have policies in place that limit to two the number of passengers in wheelchairs travelling on planes! What’s more, the smaller the plane, the less likely it is that they will be able to accommodate power wheelchairs in their hold. Renting an accessible vehicle can also be challenging: again, availability is limited and advance booking is essential. Then there are all those little things to think about: purchasing travel insurance that’s appropriate to your needs; ensuring that you have enough medications for your trip, plus spares and their generic names, just in case; making sure your wheelchair or other appliances can be charged at your destination – all this and more, in addition to the usual pre-trip planning that’s necessary for everyone.
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ACCESSIBILITY This may seem like a lot of hard work, but careful planning will pay off in the end. The Internet is the obvious place to start, but don’t trust everything you read there: always doublecheck with airlines, hotels and other service providers directly. Also remember that a lot of material on the Internet is out of date, which could mean that things are better or worse than they might appear from articles you read. It’s always best to consult multiple sources and then go to somebody with local knowledge to confirm information; the more critical your need, the more important it will be that the information you have is correct. But where do you start when looking for this kind of information on the Internet? This is an issue that has preoccupied me since I took on the role of Accessible Travel Manager for Lonely Planet. There is a lot of information out there, but it’s often not easy to find. As mentioned above, tourism bodies are increasingly providing information for travellers with access issues, with the national tourism organisations of England2, Scotland3, Spain4 and Germany5 leading the way. But whichever country you’re travelling to, it’s worth starting with the national tourism website. If you’re travelling in Europe, there’s also a relatively new initiative sponsored by the European Commission: the European Accessible Tourism Directory (pantou.org), which lists businesses of all shapes and sizes that cater to the accessible travel market. At a national level, there are NGOs such as Open Britain (openbritain.net), Wheelmap (wheelmap.org) in Germany and Jaccede ( jaccede.com) in France and Euan’s Guide (euansguide.com) in Scotland that have gathered accessible information on businesses in their country. At a more local level, there are literally dozens of mobile apps that seek to crowd-source accessible information about businesses in their area; Able Road, Blue Badge Style, Woussoul, Here We Go, Wheelyapp and Out & About are just a handful of an evergrowing number of examples. It’s worth looking for mobile
apps such as these that cover your chosen destination. If you have a particular disability, it’s definitely worth checking out the national organisation for that disability in your destination country (eg - www.msaustralia.org.au) as they are bound to have loads of useful information and resources relevant to you as well as giving you the opportunity to connect directly with people and groups who may be able to give you invaluable advice. As for Lonely Planet, there is the long-standing Travellers with Disabilities branch of the Thorn Tree forum6, where you can ask for or find advice from other travellers. There’s also a growing Google+ community, Travel for All7, which we launched at the end of last year and which hosts information, inspirational stories and articles of interest related to accessible travel. Finally, we are about to publish our pilot Accessible Melbourne e-book, which combines our regular content augmented with crowd-sourced accessibility information, together with contributions from individuals and organisations in the disability sector, and freshly authored accessible travel content. My ultimate goal, of course, is to integrate accessible information into our mainstream content–this pilot Melbourne project is our first step towards that end.
Appendices 1. 2. 3.
4. 5.
6.
7.
www.destinationsforall2014.com www.visitengland.com/accessible-england www.visitscotland.org/business_support/advice_materials/ advicelink_guides/accessible_tourism.aspx www.spain.info/en/informacion-practica/turismo-accesible www.germany.travel/en/ms/barrier-free-germany/start/barrierfree-germany.html https://www.lonelyplanet.com/thorntree/forums/travellers-withdisabilities https://plus.google.com/communities/114049628154087345562
CALLING ALL BUDDING PHOTOGRAPHERS! FOLLOWING ON FROM the success of last year, MS Ireland is asking amateur photographers from every corner of the county to step out into their local community, capture the very best it has to offer and be in with a chance to be a part of our 2015 calendar. We’re looking for landscapes which showcase our beautiful country at its best. So get snapping around your area and enter our competition today! Two images will be selected to appear within the calendar. Winning entrants will see their image in the following places, in addition to the calendar:
In our MSnews magazine which is sent to over 5,000 members, clinics and health professionals around the country In a special edition of our eNews, sent to over 6,000 people Throughout our social media profiles – Facebook and Twitter Each of the images will be framed and put up in the MS Care Centre in Rathgar, Dublin
For more information or to enter, contact Annette on (01) 678 1600 or email
[email protected]. Closing date is midnight on 31st August. Terms and conditions and image specifications can be found on our website: www.ms-society.ie.
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www.ms-society.ie
SUPPORT
MS Information Line The MS Information Line is there to provide professional and confidential support when it’s needed. You are not alone - please get in touch if you need to talk about your MS.
Why call the MS Information Line? Are you newly diagnosed with MS and feeling worried, frightened or simply looking for more information? Have you been living with MS for some time and are experiencing difficulty with aspects of it?
GET SOCIAL Join our incredibly active MS community online to stay informed, meet new people and share experiences! Website: www.ms-society.ie Read the latest news over on our blog; check out what’s happening in your area on the events calendar; sign up to one of our national fundraisers or hold your own and find out all about how MS Ireland supports people with MS through services, advocacy and research. eNews: Sign up at www.ms-society.ie Our informative online monthly newsletter is sent straight to your inbox full of the very latest on MS Ireland activities and Irish and international MS developments including topical updates about potential new treatments, benefits and entitlements and important upcoming events. Facebook: Multiple Sclerosis Ireland. www.facebook.com
Does a member of your family, a colleague, a neighbour or a friend have MS and you would like some support information?
As our most popular community network (with over 6,000 active members), this is where we post the latest news, ask our Tuesday Question which always gets people talking and encourage our supporters to share their achievements.
Would you just like a friendly listening ear?
Twitter: @MSIreland. www.twitter.com
What can we do? We provide information on a wide range of topics related to MS including potential treatment options, symptom management and the different ways that MS can affect people’s lives We help people source information about benefits and entitlements, statutory services, employment issues, insurance and many other areas We provide general and up-to-date information about MS to health professionals and students We make referrals to our nationwide team of Regional Community Workers and voluntary Branch network
Monday - Friday, 10am-2pm Call: 1850 233 233 Email:
[email protected] www.ms-society.ie
Sharing breaking news with our ever-growing number of MSers (that’s over 3,000 so far) and talking to and sharing updates from our friends and colleagues in the international MS community is what you’ll find here. YouTube: MS Society of Ireland. www.youtube.com This is where you can watch over 70 videos ranging from conference presentations from leading international health professionals to living with MS personal stories and fundraising campaign clips.
Can’t seem to find us? Don’t worry! Simply open up a new web browser and either: Go to www.ms-society.ie and click the Facebook, Twitter and YouTube icons or Go to www.google.ie and type in ‘Multiple Sclerosis Ireland’ followed by either ‘Facebook’, ‘Twitter’ or ‘YouTube’ and we will appear as the first search result. Click and you’re there!
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FEATURE
To me, from me to Aoife Kirwan is one of our MS and Me Blog team and an inspiration ook young people living with MS. Following a trawl through an old noteb Aoife from college, when she was going through the diagnosis stages, she felt like she was reading someone else’s words. Here, knowing what self. knows now, Aoife writes a letter of advice to her newly diagnosed Dear Aoife, YOU WERE SEMI-PREPARED for today. You prepared for the worst while hoping for the best, and (as you think) it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what has 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 a while. This is a scary time, allow yourself to feel the way you feel. There is no right or wrong way to feel. 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, not you. But it is you. 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; then they know the situation so they can help you more. 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 effect 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
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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 MS Ireland. Engage with the community, they have all been where you are now. Don’t be afraid to inform yourself, 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 works long-term. Don’t feel under any pressure to push yourself into a decision.
Take your time, relax and breathe.
Aoife, www.ms-society.ie
Dates for your diary NORTH DUBLIN T: (01) 490 5933 | E:
[email protected] Computer Classes 10am, Sept 17th – Dec 17th Coláiste Íde, Finglas Computer Classes 11am, Sept 19th – Dec 19th Coláiste Íde, Finglas Newly Diagnosed Information Day September 27th Carlton Hotel, Dublin Airport MID WEST T: (061) 303 802 | E:
[email protected] Regional Interbranch Meeting 7pm, September 18th TARA, St Nessans Road, Ballykeeffe, Limerick Support Group @ TARA 11am, September 19th Newly Diagnosed Information Day @ TARA 25th September Carers Support Group @ TARA 7.30pm, Last Monday of every month Chiropody @ TARA September 2nd, October 14th, November 25th Self Management Programme @ TARA October 16th – November 20th weekly NORTH EAST T: (042) 975 4304 E:
[email protected] Carers Information Day August 23rd The Hillgrove Hotel, Monaghan Coffee Morning 10.30am, September 9th Lisgrey House, Virginia Coffee Morning 10.30am, September 11th The Hillgrove Hotel, Monaghan Coffee Morning, Monaghan 10.30am, September 17th Glencarn Hotel, Castleblayney Coffee Morning 10.30am, September 24th Kilmore Hotel, Cavan Newly Diagnosed Information Day November 8th Kilmore Hotel, Cavan Coffee Morning 10.30am, December 4th The Hillgrove Hotel, Monaghan Coffee Morning 10.30am, December 9th Lisgrey House, Virginia
Coffee Morning, Monaghan 10.30am, December 10th Glencarn Hotel, Castleblayney Coffee Morning 10.30am, December 17th Kilmore Hotel, Cavan
Physiotherapist-led Exercise Classes 10am, September - December Waterford Leisure Centre, Enniscorthy Yoga Classes 10am, ongoing 8 week programme Alphazone Studios, Waterford
LOUTH BRANCH....................................... Yoga Classes 11am, September 9th – 30th Monasterboice Inn, Co. Louth Support Evening 7.30pm, Sept 24th, Oct 29th, Nov 26th Monasterboice Inn, Co. Louth Christmas Lunch 11am, December 10th
TIPPERARY SOUTH BRANCH.................... Yoga Classes 11am, September 15th – October 20th St Joseph’s, Ferryhouse, Clonmel Yoga Classes 11am, November 3rd – December 15th St Joseph’s, Ferryhouse, Clonmel
MS CARE CENTRE T: (01) 490 6234 | E:
[email protected]
WEXFORD SOUTH BRANCH...................... Yoga Classes 9.45am, ongoing 6 week programme Coolcotts Leisure Centre, Wexford Town Physiotherapist-led Exercise Classes 10am, ongoing 8 week programme Murrinstown Community Hall, Wexford Town
Regina Nathan Concert 16th April 2015 Zion Church, Rathgar, Dublin
SOUTH T: (021) 430 0001 E:
[email protected]
NORTH WEST T: (074) 912 5017 E:
[email protected]
FERMOY BRANCH....................................... Flag Day September 6th SOUTH KERRY BRANCH............................ Old Kenmare Road Walk October 12th
MEATH BRANCH....................................... Halloween Party October 29th
Carers Weekend Break 22nd – 24th August Abbey Hotel, Donegal DONEGAL BRANCH..................................... Support groups for people with MS 1st Wednesday of every month, 7.30pm Cheshire Apartments, Letterkenny 2nd Tuesday of every month, 7.30pm Bluestack Centre, Donegal Town 1st Monday of every month, 8pm The Halfway House, Burnfoot Support group for Carers of people with MS 1st Thursday of every month, 7.30pm 28 Slieve Snacht Close, Letterkenny
SOUTH EAST T: (056) 777 7771 E:
[email protected] Yoga Classes 11am, September - December Gorey Adult Learning Centre, Wexford
WEST T: (091) 768630 | E:
[email protected] Physiotherapy Classes Recommencing 4th & 5th Sept Castlebar & Ballina NATIONAL EVENTS Skydive for MS October 4th MS READaTHON October 10th – November 10th Lycian Way, Turkey Trek October 12th – 20th Dublin Marathon October 27th Kilimanjaro 8th – 18th July 2015 Camino Trek 30th May – 9th June 2015 Everest Base Camp 9th – 26th September 2015
ion ng sess e of i n i a r t Win a h som lass wit ts stars! c r u o y for por tered into ’s top s n Ireland g schools will be e ll details. icipatin te for fu All part r websi . S e e ou in w to a draw
OCT 10th– NOV 10th 2014
g n i d gins! a e e r b r youquest
Sign up at www.msreadathon.ie Multiple Sclerosis Ireland, 80 Northumberland Road, Dublin 4 T: (01) 678 1600 | F: (01) 678 1601 | MS Info Line: 1850 233 233 E:
[email protected] | W: www.msreadathon.ie | Charity Number: 05365 MS Ireland is signed up to the Statement of Fundraising Principles.
