1987 - 2012 TH Parkinsons.ie Parkinson’s Association of Ireland ANNIVERSARY SUMMER 2012 QUARTERLY MAGAZINE Education Interview Special Feature Educating Health Professionals Tina O'Gorman 'One in a Million' National Patient Conference 2012 Page 4 Page 6 Page 8/9 Parkinsons.ie Parkinson’s Association of Ireland Pat O’Rourke Chairman Board of Directors Parkinson’s Association of Ireland CONTENTS 2 3 Through the Chair Dear Friends, As we move towards summer our largest information meeting for many years looms large and we encourage all our members and their families to make a special effort to attend this important conference. Some of the World’s leading authorities on Parkinson’s will be on hand to share their collective knowledge on the disease, its impact and possible advances in treatment over the coming years. Our centre pages are once again devoted to this event with more information coming to hand each week. We have already registered over two hundred people for the conference and we only have capacity for seven hundred in total. We were recently contacted by Brian Morrow who organised a fantastic line up talent featuring Jerry Fish and his band, to deliver what can only be called a sensational night of entertainment in Whelan’s of Wexford Street. The ‘Soul Stir Session’ was a great success and we extend our deep appreciation to all of the talented musicians and the multitude of other people who worked behind the scenes to raise awareness of Parkinson’s and, in the process, raise badly needed funds to ensure that we can carry on our work on your behalf. Very special thanks go to Brian for his guiding hand and obvious organisational skills. 4 5 6 7 8 Through the Chair Pat O'Rourke Special Report Parkinson's Disease Nurse Training Education Educating Health Professionals Association News Social Weekend 3rd Annual Parkinson's Raffle Results Proﬁle Tina O'Gorman 'One in a Million' Fundraising The Soulstir Sessions for Parkinson's Anita - Our Pancake Lady music4you.ie Winner Announced Special Conference Feature National Patient Conference 2012 10 Carer Proﬁle - A Carer's Perspective Richard Lynch Interview Our Parkinson’s Nurse, Alison Cashell, has been busy over the last few months updating our web site, submitting articles for our magazine, delivering information courses to nursing homes and meeting members at Branch meetings. Our National Raffle has been another huge success and I wish to express my gratitude to everyone who has taken part. Later this year we will be hosting our Annual Social Weekend in the Kilkenny Ormonde Hotel in the heart of the marble city. Everyone who attended last year’s event in Galway will confirm how relaxing these events are and how good it is to have a social outlet such as this. Bookings will be taken shortly from our National Office and thankfully we have managed to retain the costs at last year’s rate. 11 Branch Spotlight In the last few weeks work has been completed on a new awareness video featuring David Walsh, Margaret Mullarney, Andrew Curran, and Harold Huberman. This awareness video is very powerful and in a short feature the impact of Parkinson’s is very well conveyed. Great credit is due to those featured and particularly the directors Domhnall Gleeson & Hugh O'Conor and producer Andy Bradford for Sweet Media and a host of other wonderful people. The video is available on our website and on our Youtube channel. I would encourage you to view it and ask your friends to view it too. Thanks to all who gave of their time and expertise for this! (See our ad on page 16). 14 Branch News Finally I am pleased to inform you that at a recent meeting the Association’s Board of Directors accepted the recommendation of a recruitment committee, which was set up to find a replacement for our former CEO, Joe Lynch. Unfortunately the new CEO will not be able to take up the appointment until the middle of the year as he has to complete his employment contract which requires three months notice. We will be in a position to introduce him to you in our next edition of this magazine and we are sure he will be warmly welcomed by you. I look forward to seeing you all at our conference in June. Yours sincerely. Pat O’Rourke Chairman 2 PARKINSON’S IRELAND Galway 12 Research Review of Recent Research Literature 13 Ask the Experts Parkinson's Nurse Alison Cashell and Professor Tim Counihan Answer Your Questions This issue of our magazine was supported through a grant from We make every effort to be as accurate as possible, and in the event of a mistake being made, it is our policy to acknowledge it in the following quarter’s publication. The material herein is for your information only, and does not represent advice. No changes to your treatment regime should be made without the prior agreement of your consultant or GP. PA R K I N S O N ' S N U R S E T R A I N I N G Parkinson’s Disease Nurse Training varied backgrounds, it makes for interesting conversations as we all try to appreciate individuals own perspectives. We all began with a block week in April, which will be followed by a second block week in July, and then all course work has to be submitted in October, so I have a busy summer ahead of me. I am also participating in a Parkinson’s Disease Masterclass for Nurses, which is run by the Parkinson’s Academy, and is supported by Parkinson’s UK and pharmaceutical companies. These two two-day workshops (one in March, one in October) are specifically for nurses who work in the Parkinson’s field. Myself, two nurses from Dublin, and two nurses from Northern Ireland attended, and we have planned a couple of meetings to take place over the summer to discuss our group work in service development. Nurses in Training Alison Cashell joined the Parkinson’s Association in February 2011 and since then she has become an invaluable part of the services offered by PAI. There has been a huge effort made to up-skill Alison’s already extensive knowledge of Parkinson’s disease through enrolment in a Parkinson’s Disease Nurse Specialist course in the UK. However this has proved problematic. Alison has not been inactive in relation to education on Parkinson’s and she takes up the story from here. In the meantime, I have been busy attending day courses and educational meetings around Ireland and the UK, (and one in Sweden) on topics from Parkinson’s Plus Syndromes to Treatment and Management of Parkinson’s. These meetings have helped to educate me in current and new practices, as well as helping me to network with other Parkinson's nurses and doctors who also attended. I have also completed an online course run by the American Association of Neuroscience Nurses “Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses”. Many of the Parkinson’s Disease Nurse Specialist courses that have normally run in the past have been temporarily, or permanently, cancelled due to lack of interest and/or funding. Thankfully, after a few postponements, I have begun a course in Cornwall with the University of Plymouth called “Enhanced Parkinson’s Disease Management” at degree module level. This course in run by Parkinson's Disease Nurse Consultant, Lynne Osborne, and is open to health professionals in all areas. There are nurses with varying degrees of experience, physiotherapists, and a pharmacist on the course from Ireland, England and Scotland, so with all our knowledge and Contributors Editor Ann Keilthy 087 2853117 [email protected] Photography Richard Lynch Ann Keilthy James Weldon Alison Cashell with Richie Kavanagh on RTE with Maura Derrane Special Feature National Patient Conference Editorial Team Ann Keilthy Joe Lynch Una Anderson Ryan Pauline Mahady Alison Cashell Contributors Ann Keilthy Una Anderson Ryan Dr. Tim Counihan Pauline Mahady Alison Cashell Marie Cahill Front Cover Picture 'One in a million' Tina O'Gorman and Richard Lynch Parkinson’s Association of Ireland, Carmichael House, North Brunswick Street, Dublin 7 Tel: 01 872 2234 Email: [email protected] • Web: www.parkinsons.ie Freephone Helpline: 1800 359 359 Mon-Fri 9am-9pm Company registered in Ireland No. 123532, CHY No. 10816 Registered address as above www.parkinsons.ie Parkinsons.ie Parkinson’s Association of Ireland Summer 2012 3 E D U C AT I O N Educating Health Professionals Effective communication in health care is crucial for health care professionals, the patients and the establishment providing the care. Andy Betts, a freelance nurse consultant and professor at the University of Nottingham in the United Kingdom, claims that "studies over the last three decades identify communication problems as persistent causes for concern in the delivery of health care." "Ann Keilthy gave When communication is lacking an informative talk in the health care industry, there is poor medical care on the day" given, mistakes made and a lack of clarity. With lives in the balance, effective communication is a must in health care. Parkinson's disease is a very difficult condition to diagnose as it's symptoms present so differently in different patients. Symptoms can develop slowly and not all patients have a ‘classic’ tremor. Neither do all patients have muscle rigidity, freezing or display symptoms such as depression. The medical professionals who are part of the team who diagnose Parkinson's disease learn much from text books but they learn far more over the years, from listening to people who live with the condition. Our association has been engaged for many years in talking to the health professionals. We use the best experts we have to educate future health professionals, our members and our Parkinson’s Nurse. One such talk we arrange is at the University of Limerick with Ann Keilthy. Each year Ann talks to the medical students and tells her story from early diagnosis to Deep Brain Stimulation (DBS). Over ninety students from all over the world sit silently while Ann details her inner thoughts on living with Parkinson's and helps the students to hear the patient’s story in a very real way. It is obvious to all who listen that Ann has learned so much about Parkinson's and she demonstrates how she uses that knowledge to empower herself to live a much better life with Parkinson's. Ann acts as a guide to help her medical team manage her condition a little better with her unique insight and was one of the guest speakers at the World Parkinson Congress in Glasgow in 2010 and she also presented at the Dublin DBS conference in 2011 (which she also helped to arrange!). People with Parkinson's talk to pharmacists, doctors, nurses and other health professionals and their individual stories help to better inform the students about Parkinson’s and the effects it has on every aspect of the patient’s life. For instance, Billy Rice speaks about voice therapy and ending up with a singing group. Sid Rellis tells how maintaining a good social life, avoiding depression and keeping his brain active through playing bridge have all helped him. Eddie Butler will tell how a good diet is essential and David Walsh talks about cycling and gym work. Recently our Parkinson’s Nurse, Alison Cashell, has travelled to nurse meetings, nursing homes and community carers to give educational talks on the effects of Parkinson’s. She has also written an article for the Irish Pharmacy News magazine on the medications used to manage Parkinson’s disease (PD), which was published in their March edition this year. At a recent meeting of the Practice Nurse Association in Cork, Alison spoke to the nurses who all work with GP’s in the Cork area. These nurses asked very relevant questions, and were surprised by all the different aspects to Parkinson’s disease. She has also have visited a number of nursing homes in various parts of the country, talking to both nurses and carers about the day-to-day management of the disease and how to deal with problems, such as ON/OFF, Freezing and the importance of getting medications on time. Over the next month, Alison will be speaking to students undertaking a course in Gerontology Nursing in Kilkenny, and she is scheduled to visit even more nursing homes in the coming weeks. Alison’s talks are tailored to suit the audience she is addressing and the range of topics goes from the importance of managing constipation (one of her favourite topics of conversation!) to the effective management of non-motor symptoms and tips and tricks around avoiding Freezing. However, sometimes the most sought after information comes from people with Parkinson’s, providing memorable accounts of living with Parkinson's on a first hand basis to healthcare professionals. If you know a group in your area who would benefit from meeting our people with Parkinson's or our Parkinson’s nurse, please call Pauline on our helpline 1800 359 359. Participants at the recent DBS Conference in Croke Park 4 PARKINSON’S IRELAND A S S O C I AT I O N N E W S Social Weekend, Kilkenny 12th - 14th October, 2012 • The Ormonde Health Club and KO Spa offers a range of relaxing Elemis spa treatments. The health club includes a steam room, sauna, and a children's pool. • Secure central parking, available at a low additional cost. This is a great opportunity to relax, unwind and gather information on Parkinson’s to help make living with the condition a little easier. OPTIONS and PRICES OPTION 1: Full Weekend Friday to Sunday 2BB 2D 2L per person Ormonde Hotel, Kilkenny Each year we host our Annual Social Weekend for people with Parkinson’s, their families and friends. This year we have chosen the fantastic four star Kilkenny Ormonde Hotel, in the heart of Kilkenny City. We have held the cost of the weekend at last year’s level and we have the usual mix of education and entertainment in a supportive setting for those who need it, so you can learn and then relax in the company of others in the same situation. Friendships are forged, renewed, and good memories are always made. This year, as usual, Saturday is the Parkinson’s Information Meeting day. We are putting together an interesting line up of speakers and topics, and we will have a new selection of information leaflets available for you to take home with you. We hope you will both enjoy and benefit from the day and the social weekend. • The Hotel’s 118 rooms were recently refurbished, and the hotel has an indoor swimming pool, jacuzzi and a gym. Free wired internet access is available in the bedrooms and free WIFI in the lobby areas. • The hotel is only a two minute walk from the main shopping street and Kilkenny Castle, and a 10 minute walk from McDonagh Train Station. To include • PAI Dinner and Entertainment on Friday evening • Overnight accommodation on Friday night • Breakfast in the Hotel on Saturday morning • Parkinson’s Information Meeting on Saturday • PAI Lunch on Saturday • PAI Dinner and Entertainment on Saturday evening • Overnight accommodation on Saturday night • Breakfast in the Hotel on Sunday morning PRICE……………………..€420 (Double or Twin room) PRICE………………………€250 (Single room) OPTION 2: Short Weekend Saturday-Sunday 1 BB 1D 1L per person To include • Parkinson’s Information Meeting on Saturday • PAI Lunch on Saturday • PAI Dinner and Entertainment on Saturday evening • Overnight accommodation on Saturday night • Breakfast in the Hotel on Sunday morning PRICE…………..…………..€240 (Double/Twin room) PRICE………………………€160 (Single room) OPTION 3: Saturday only To include • Parkinson’s Information Meeting on Saturday • PAI Lunch on Saturday • PAI Dinner and Entertainment on Saturday evening PRICE………………………€60 per person OPTION 4: Parkinson’s Information Meeting including lunch PRICE………………………..€20 per person 3rd Annual Parkinson's Raffle Results Thanks to all our member’s who generously supported our recent Annual Raffle. This year €14,937 was raised. THE WINNERS WERE : Patricia Kavanagh Laurence Harkin Roisin Hurley M. O’Mahony Phil Twomney Mark Wheatley - Dublin Fermanagh Meath Kerry Dublin Wicklow William Burke Ger O’Mahony T. Roche Robert Heffernan Michael Boyle Orla O’Mahony - Clare Clare Dublin Kerry Donegal Dublin Mary Kearney John Kelly Margaret McMahon Lauren McGrane Evelyn Ballagh Gary Kavanagh - Wicklow Limerick Clare Wicklow Dublin Cavan The National Office staff would like to express our thanks to Eddie O’Brien, who made a very special effort in supporting our raffle. www.parkinsons.ie Summer 2012 5 PROFILE Tina O’Gorman 'One in a Million' Tina O’Gorman really is an incredible lady and rightly deserves the title of one in a million. Una Anderson Ryan takes up the story from here. What better way to learn about Tina O'Gorman than through the eyes of her friends. I stood beside Tina one very wet, cold Friday with buckets in hand outside a shop in Limerick. Everyone came up to Tina to respond to her smile and very twinkling eyes. Quite a few didn't even ask what the charity was, they came to support Tina. They knew she was honest, genuine and whatever charity she collected for, the donors knew it had to be worthwhile if Tina was supporting it. I never experienced anyone like her. In spite of the cold she would not leave her spot. She promised to stay until 5pm, and she did. Tina who is a mother of six and a grandmother of seven from Moyross has spent 34 years fundraising and has worked tirelessly in an effort to raise funds for 121 deserving causes throughout Limerick and the Mid-West. In December Tina broke the one million Euro barrier at the Annual Aspen Red Carpet Event, a fundraiser for the Midwest Branch of the Parkinson’s Association. The event was attended by 140 guests and raised more than €5,000 and featured entertainment from Limerick songstress Leanne Moore. Tina Presented the Midwest Branch with Over €5,000’ Photo by Paul Mullins Tina O'Gorman with Richard Lynch Tina began fundraising at age 19, following the death of a relative from cancer. "What gives me the greatest satisfaction is the joy on people's faces that you have just helped. It is very heart-warming," Tina says. To see a video about Tina visit www.ILoveLimerick.com. I admire her enormous energy and undoubted commitment. During the months before Christmas while she was fundraising for Parkinson's, three of her close friends passed away. Even in her grief she continued to complete her promise to us and to raise much needed funds. I don't think I have ever met anyone quite like her. I wish her well and say a very special thank you to her for all her sincere hard work. Tina was described by Una and her good friend, Richard Lynch, as acting for people with Parkinson's without publicity for her input. Richard said that "working with her is a ball" and that not all those who offer to fundraise end up honouring that promise, "but Tina always does." High praise indeed from those with whom she works tirelessly for charities in the area, including Parkinson’s, and praise surely well deserved! Tina commented that she made a commitment after the first benefit she arranged for the Association’s Midwest Branch, after which she said she would do the same every year, and she pledged “please God, I'll do it as long as I am able." She says she got into fundraising through a friend having cancer. "I need the emotional chord touched, and then whatever I am able to do I will do." Richard told us, she is, “big-hearted, Tina is truly one in a million” 6 PARKINSON’S IRELAND Tina’s Charitable Work Was Recently Recognised on TV3 EDITOR'S NOTE: Is there someone in your branch or in your area that is a champion fundraiser for Parkinson's, or a dedicated carer whose story is inspiring? If so, why not showcase them and their work for use in our next magazine edition. Send via email to [email protected], or by post to our National Office and please include at least one good photo/image. FUNDRAISING The Soulstir Sessions for Parkinson’s Soulstir Sessions musicians with Pat O'Rourke and Shay Healy (front) On Saturday 28th April, an incredible line up of musicians took to the stage in Whelan’s of Wexford Street, Dublin for The Soulstir Sessions gig in aid of Parkinson’s. Jerry Fish, Vyvienne Long, Toot Sweet and the Shadow Man, Last Minute Earl, Gypsy’s Wish and Tony McCann all gave simply superb performances in the legendary music venue in front of an enthralled audience. The musician’s travelled from all corners of Ireland to be there and play in support of Parkinson’s. This was an inaugural gig for The Soulstir Sessions who are dedicated to helping raise awareness for Parkinson’s through music. A huge thank you to all the musicians for giving so kindly of their time and creating such a wonderful night. The Soulstir Sessions team owe sincere gratitude to Cian Boylan, established composer, musician and arranger who invited such big name artists such as Jerry Fish, Vyvienne Long Anita – Our Pancake Lady Anita Connaughton was diagnosed with Parkinson’s eight years ago and, as she says herself “I feel I am doing very well”. Anita decided to do a fundraising day for the Parkinson’s Association on Shrove Tuesday and she had pancakes with various different fillings available at her home in Rockfield, Roscommon, during the whole day. Anita told us, “We had a steady flow of people and judging by all the empty plates I can safely say the pancakes were very tasty. Thanks to the generosity of all the people who came to my home I raised €1,000 on the day. I would like to thank everybody who donated to the fund. Last but by no means least a huge thanks to my family and friends who helped to make the day a great success and also a very enjoyable occasion”. Go raibh mile maith agaibh go leir. and Toot Sweet to take part and who also played with many of the acts on the night. Thanks too to Pat Courtenay of Radio Nova for MC’ing the night seamlessly with such fun and energy. A large number of people were involved in making this night happen so successfully, including: Dave Allen at Whelan’s for allowing The Soulstir Sessions to have the coveted Saturday night slot on the Whelan’s main stage and to Gerry Brady, engineer, Luke O’Brien on sound and Alastair on production. A big thank you to George Forsyth Jr. from the band The Cold 100 for his support and for inviting Pat Courtenay to participate. Thanks also to the legendary Shay Healy for attending the event, Gianni Annelli Photography and Constanze O’Toole of Illume Photography for taking such great shots on the night. Gareth Morrow of Digijam Design for the superb work on poster design and supporting graphics, Jeff Morrow and the Fa Joes music festival for the opportunity to meet and involve some of Armagh’s finest musicians to play support on the night. We also thank Virginie Villette, Kieran Flood, Karel Prusa and many others for helping with poster and flyer distribution. A huge thank you to the many people who supported media coverage for the gig including Hotpress, The Irish Time’s ‘The Ticket’, the Parkinson’s Association of Ireland, Move4Parkinsons, Parkinson’s UK- N. Ireland Region and music4you.ie. And importantly to all those who came along and had a brilliant night in support of Parkinson’s. We at the Parkinson’s Association of Ireland would like to extend our thanks to all those involved including Brian Morrow, founder of The Soulstir Sessions and coordinator for the event. The night provided a great opportunity to address the audience and raise awareness of Parkinson’s and the tireless work of many in support of those with Parkinson’s. The Soulstir Sessions team aim to run gigs across the country in as many towns and music genres as possible. If you are interested in getting involved, they can be contacted at [email protected], on Facebook at The Soulstir Sessions and on Twitter @soulstirsession. music4you.ie Winner Announced Congratulations to this year’s overall winner, Deane Connaghan with his song ‘Goodbye Miss Jane’. The winning song can be heard by following the link to the Song competition on the music4you Facebook page. It was a great experience for those organising the event and those who took part. The feedback has been great with everyone recognising the value of the creative endeavour, while bringing awareness to a great cause. Parkinson’s is very close to organiser’s hearts and we give a special thanks to all of those companies and individuals who supported this event: www.buildermonkey.com, Xmusic, Music Therapy Ireland, Maurice Gunning , Red Door, I lovelimerick. com, Limerick Leader, Live 95 Congratulations once again to Deane and a very grateful thank you to everyone who organised the competition and, of course everyone who took part. music4you.ie winner - Deane Connaghan Anita, Family and Friends www.parkinsons.ie Summer 2012 7 S P E C I A L F E AT U R E National Patient Conference 2012 National Patient Conference to be held in the Convention Centre, Dublin in June 2012 Our preparations for the June 17th National Patient Conference have kept us busy. The conference centre is the appropriately named ‘Convention Centre Dublin’ and is state-of-the-art and already gaining a great reputation. Through the excellent work of Professor Tim Lynch the Michael J. Fox Foundation has contacted us to introduce an initiative that our members might like to participate in. This initiative has been launched in America, Canada and Australia but the Foundation did not have an opportunity to launch it in Europe up to now. We are delighted to give them some time, albeit short, to do so at the Information Day and to hear first-hand the details of the initiative. They will bring leaflets with them which will explain everything very clearly, and we will include this information in your Registration Packs. The initiative is called ‘Fox Trial Finder’. The panel (right) is a letter from the foundation and it explains what it's about. HAVE YOU REGISTERED FOR THE NATIONAL PATIENT CONFERENCE? There are only limited places available for what is probably a once in a lifetime opportunity. More details on our website www.parkinsons.ie or call our helpline 1800 359 359. We are honoured that this event is coming to Dublin as part of the Movement Disorder Society International Conference. Those speakers who have agreed to speak are coming to Dublin a day earlier and have been carefully selected to suit an Irish audience and will present their talk with a lighter approach so you will enjoy the sessions. For instance, have you heard that Daniele Volpe from Italy has some interesting results of research into the benefits of Irish Set Dancing and Parkinson’s. That is certainly something new! Good clear knowledge will empower you to take control of your Parkinson’s and with a more positive attitude, deal better with the difficulties you may face. We assure you, the day will be very beneficial you and your family. If you cannot come, encourage some of your family to attend. Most of our branches are running special buses to get you to the door and home again making it a more like a branch outing. Call your local branch secretary once you have registered so they will know the exact number travelling and to ask about booking your place on the bus. Also, the branches were sent some posters, and if you would ask your branch officers for even just one poster and put it up in your local GP’s waiting room or the noticeboard in your local church or supermarket, that would be wonderful! 8 PARKINSON’S IRELAND l: Match to Clinical Trials on Fox Tria Register today and be part of the answer to Parkinson’s disease! , you give When you participate in research Trial Finder opens Fox buy. t can’ something money e a priceless the door to your opportunity to mak Parkinson’s . cure a for ch sear contribution in the eager to play an are s one d love r thei and ents pati dozens of new active role in finding the cure, and . Yet challenges year each d che laun are s trial cal clini n that these mea n ofte too nts identifying participa started. get ly studies finish late — or never real enough volunteers Today, 80% of trials fail to recruit s research slow within planned timelines. This sting in inve from ers fund rs dete progress and only 1 in 10 that ated Parkinson’s research. It is estim cal trials. clini in te icipa part n’s inso Park people with this low that w kno we es, Yet in spite of the challeng munity’s com n’s inso Park the es beli rate participation up. significant interest in stepping g makes it easy for www.foxtrialfinder.michaeljfox.or find personalized to s one d patients and their love specific individual on d base s che mat trial l potentia history). You ical med and criteria (i.e. location n more about lear to s team trial with t nec can con re potential futu to ted aler participating, and stay recruiting. t star s trial new as arise that s matche 00 registered Our goal is to end 2012 with 10,0 research. To get in te volunteers willing to participa the word about ad spre to e tinu con there, we must PD community. the for this need – and opportunity – today by hs oug kthr brea ed spe to Join the effort g and x.or eljfo visiting www.foxtrialfinder.micha Finder Trial Fox of er pow The ile. creating your prof e shar so ed, plet com grows with every new profile of bers mem and ds, frien ily, fam with Fox Trial Finder your community. Thank you for being part of the Michael J. Fox Foundation answer. C ARER PROFILE A CARER'S PERSPECTIVE - Richard Lynch Interview Sid Rellis, David Greaves, Billy Rice and Richard Lynch at the recent Limerick leg of the ‘Pedal for Parkinson’s’ cycle ride for the Cure Parkinson’s Trust We knew little about the gentleman Ann Keilthy interviewed recently in Pery’s Hotel, Limerick except that he writes a column in a local newspaper and that he is a carer to his mother who has Parkinson’s. We soon found out that he had recently become “Limerick Man of the Year 2011”. Ann continues the story from here. Meeting Richard for the first time I was struck by how tall he was, and there seemed to be an air of fragility about him that was completely contradicted by his open and breezy ‘Let’s get on with it’ attitude. Once seated, the conversation immediately concentrated on caring, what it was, and the impression Richard wanted to give. “The job of a carer is primarily that of physical care, but my job is not just to provide physical care, but emotional care too. I think successful caring has a lot to do with being supportive and having a sense of humour. Parkinson’s can be very depressing; you can feel very helpless.” There was a pause before he continued: “I don’t believe in pitying - that can be a very Irish thing, the ‘poor you syndrome’. I don’t pity Florence, my mother, because she has Parkinson’s, I don’t treat her any differently.” I asked him how he became Florence’s carer. “I was living in New York, and I came home because I was needed. I never looked on it as an obligation, but rather as an opportunity. I am the only one in my family who is not married. This is a person I love more than anyone else in the world and I have been given this opportunity to spend an amazing amount of quality time with her. We laugh a lot - we spend most of our time together laughing.” “My mother’s faculties are 300%, but physically not so good. She has knee problems that mean she cannot walk properly. In fact, Parkinson’s is her most manageable problem!” Una Anderson Ryan recalls of Florence that she was an amazing fundraiser herself when first diagnosed with Parkinson’s. At this point I suddenly remembered I had met her many years ago now, when I had interviewed the Midwest PDNS, Margaret 10 PARKINSON’S IRELAND Richardson, for the PAI magazine. The memories were shared. He remembered her making purchases every Sunday at the local cash and carry and raffling them off. “What I do is the same but different. I am a child of 2012 and I know how to use the internet and film production. We are different people but basically the same, as she is still raising money for Parkinson’s, and organises the Mini Marathon for the Midwest Branch each year.” “A carer’s job is stressful and sometimes debilitating. It can be stressful but you cannot show that to the person for whom you are caring - you don’t want them to think they are making you unhappy, so you have to be careful.” When asked if he in turn gets any support, he says his brothers and sisters are extremely supportive. “They come every day, make tea, eat the food in the fridge, and then go”, he says with a laugh. Richard says that he does not necessarily write about things like the “Limerick Man of the Year” award. He is not in it for the publicity. “My mother is a fighter and this makes my job much easier.” When asked what advice he would give other carers he says:” Give positivity and love. If you are going to care for someone, you have to start from a very positive place or it is not going to work. I had been in New York for fifteen years, and this was an opportunity to spend some time with my mother. At the time I thought she was going to pass away and I wanted the chance to get to know her as an adult. When I came back I was able to tell my parents how blessed and lucky I was - I had memories to cherish. My mother came from very little and gave us everything. You have to care for the right reasons. However you have to learn to bite your tongue at times because it is not about you. In the end I can say my caring circumstances are exceptional, and I consider myself to be lucky in my situation.” When I started my journey back to Dublin I was struck by the emotional and physical generosity of a son relocating from America to care for his mother and who also fundraises while writing a weekly column in a local newspaper that often mentions Parkinson’s, and more. BRANCH SPOTLIGHT Galway Parkinson's Association Branch Caroline Rushe, Marie Cahill & Clem Walsh (Galway) with Noel Grealish TD (Centre) Galway Parkinson’s Association Branch was formed about 20 years ago. The founding members were Denis Owen, Mary and John Wynn, Denis Mannion, John and Maura Fahy. The meetings were first held in the American Hotel, Eyre Square Galway and only about five or six attended the meetings. The membership at the time was around twenty. The membership started to grow and the meetings then moved to the Sacre Coeur Hotel, Salthill, Galway. One of the first big tasks the group took on was to fundraise help toward the training of our Parkinson’s Nurse Paddy Browne. Paddy’s appointment has been a huge benefit to the Branch. The number of members was growing steadily and our meetings developed to meet the needs of our members with many excellent speakers and information sessions. In 2009, we started to fundraise to help with the opening of a designated Neurology unit within University Hospital Galway. We worked very closely with the Neurology team and we achieved our goal with opening of the unit on the 19th of June, 2009, by Minister Mary Harney. This was a great day for Galway Parkinson’s and all our members and the Neurology team were very proud to have been involved in such a big project. As a result of this we have developed a great relationship with the neurologists and our PDNS, Paddy Browne. A committee member attends the Neurology clinic in UHG to talk to new and old patients and deliver information and services which are greatly appreciated by everyone including the neurology team. In January 2009, in conjunction with Paddy Browne, we developed a ‘Home Visit Service’ which enables people who are unable to attend clinic to be seen in their home by a PDNS. We started the service as a pilot project and three years on it has gone from strength to strength and it prevents a lot of Parkinson’s patients being admitted to UHG and the service has been praised by everyone including the neurologists. We realised from feedback from our members that Physiotherapy and Speech and Language Therapy were not easily available and there were long waiting lists. We worked with the Community-based Physiotherapists and Speech Therapists and agreed that we would set up classes for our members. The Clayton Hotel was very good to us and provided us with an excellent room. Since we started the classes and they have been a huge success. We are doing a refresher course for members so that they keep up with the exercises. The neurology team have noticed the positive changes in our members. We fundraise all year round to enable us to fund the room hire for these projects and we are now branching out to Tuam and Gort. We also help our members with grants and entitlements, etc. All the achievements of Galway Parkinson's would not have been possible if it was not for our members and their family members who fundraise for us or the Community Therapists who offer us their services. Thanks especially to Paddy Browne, Dr. Counihan, Dr. Hennessy, Dr. Lynch and Dr. Habib who have been of great support and help to us. Our hard working committee members also deserve great credit for giving up their time to help organise and run classes. Our Branch depends on the good will of the people of Galway City and County and surrounding areas who fundraise for us. We appreciate this and all funds raised go towards providing the services for our members. Galway Bay FM, our local radio station, are always on hand to help out announcing our various fundraisers and allowing us and the Neurology team air time to explain all about Parkinson’s. The membership continues to grow every day and our members have said more than once that joining the group is the best thing they ever did. The committee members are always on hand to help the members with any problems they have and they find this great to know that there is someone at the end of a phone who they can call. Our Branch has recently been short listed for a ‘Biomnis Health Care Award’ along with Paddy Browne for our Home Visits Service. This is a huge achievement for a voluntary group. Our chairperson Marie Cahill has also been awarded the Dr. Rana International Parkinson’s Award. Galway Parkinson’s Association Branch meet on the third Wednesday of each month in the Clayton Hotel, Ballybrit, Galway at 8pm. New and old members are welcome. If you require any further information please feel free to contact us: Phone: 087-7783825, Web site: www.galwayparkinsons.com, Email: [email protected]. ED: Everyone at PAI wish to extend our congratulations to both Paddy and Marie on their awards. www.parkinsons.ie Summer 2012 11 RESEARCH Review of Recent Research Literature Can nicotine be used medicinally to treat Parkinson’s disease? Thiriez et al, 2011 Since 1959, it has been documented that there is less Parkinson’s disease (PD) amongst smokers, and there have been many studies and trials to figure why this happens. Is nicotine neuroprotective? Can it slow down the disease, delay onset or prevent it altogether? Initially it was thought that the reduction of Parkinson's among smokers was due the increased mortality due to illness caused by smoking, but over 50 studies have been conducted, and this was found to be untrue. Even those who are exposed to passive smoking have a reduced risk of developing Parkinson's. In animal models, the results indicated that there was an improvement in Motor symptoms, in particular dyskinesias, and that nicotine had a neuroprotective effect also. Human trials, of which there have been a few, did not produce conclusive evidence that clearly finds the positive effects of nicotine on Parkinson's. The results varied greatly between participants. This may be due to the different methods of the studies, the different dosages, methods of delivery (eg smoking, patch, gum) and the duration of the study. There is further work needed, and there are currently 4 trials into PD and nicotine ongoing. Towards a Blood Test for Parkinson’s Disease, Brooks, 2012 A review of the work by Dr. Nagele into Biomarkers for Parkinson’s disease has produced positive results. A biomarker is a substance whose detection indicates a particular disease state, for example, the presence of an antibody may indicate an infection. More specifically, a biomarker indicates a change in expression or state of a protein that correlates with the risk or progression of a disease, or with the susceptibility of the disease to a given treatment. This review has revealed that Dr. Nagele’s research team have identified 780 antibodies present in people with Parkinson's, and there are 10 which are particularly high in people with Parkinson's compared to people with Alzheimer’s, breast 12 PARKINSON’S IRELAND cancer and Multiple Sclerosis, and healthy individuals. This potentially means that in the future there could be a blood test available, and so Parkinson's may be detectable earlier, thus allowing earlier treatment which could result in an improved quality of life. This study is still ongoing in America, and so the test is not yet available. Is there a link between Parkinson’s and Restless Leg Syndrome? Peeraully and Tan, 2012 Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations. Parkinson’s and Restless Leg Syndrome (RLS) are both common neurological conditions, but there has been a lot of debate as to whether a link between the two exists, and if so, what causes it? Both conditions can occur independently of each other, but are commonly diagnosed together. Questions remain as to whether idiopathic RLS (which occurs alone) and the RLS with Parkinson's both occur in the same manner because, according to some studies, the RLS with Parkinson's is milder than the idiopathic RLS. Studies and imaging (MRI scans, etc) have produced mixed results that are inconclusive. Some studies found that there was a possibility of a genetic link between the two, and some studies found that there was a loss of dopamine receptors in the brains of those with primary RLS. Problems with the Dopaminergic system seems to be involved in the occurrence of both conditions, so it is reasonable to suggest that there may be some overlap in how the disease process works. For now, there is no conclusive evidence as to why they occur separately and together, but treatment of both conditions is primarily dopamine replacement therapy. A S K T H E E X P E RT S Alison Cashell, RGN, Parkinsons Disease Nurse answers your questions. To Make an appointment to speak to Alison call 1800 359359 or email her [email protected] or fill in the online form on our web site www. parkinsons.ie/advice_asktheexperts QUESTION I have been taking medication for Parkinsons for the last six months and it has had no effect on me. Currently my main symptom is tremor of my right arm but even though I have increased the medication fourfold it has not changed my tremor at all. I would like to find out more about my condition and see if there is anything else I can do. I feel the medication I am on has not helped me but feel at a loss of what to do...carry on or stop taking it. My neurologist at the moment thinks I should just continue with the same meds which are Azilect, of which I take 1 a day and Mirapexin of which I was taking up to 6 a day but as I felt no different I am back to 2 a day. I would love some more information and advice and I look forward to your reply. ANSWER As mentioned above, unfortunately some patients respond poorly to the drugs in Parkinson's. In particular, tremor as a symptom can be quite medication-resistant. Azilect in general has a minimal effect on day-to-day symptoms, but might possibly slow the rate of progression of the disease. It also sounds as if Mirapexin is ineffective. There are several other options, and I recommend you visit your neurologist to discuss these. There are drugs of higher strength available but your specialist will advise you on their suitability for you. Questions answered by Consultant Neurologist Prof. Tim Counihan of UCHG QUESTION My father, aged 75 was with a geriatrician on Thursday last who diagnosed him as displaying mild early Parkinson’s symptoms. I obviously got a shock when I heard the diagnosis, but the specialist says that he hopes by taking Sinemet that he will have a better quality of life than he has had for the last while and when I asked will he disimprove over time, the doctor said he hoped not, based on his age, etc. I don’t really understand this as Parkinson’s is a progressive disease; can you help me out please? I have discovered many interesting articles in relation to using nicotine patches to relieve the symptoms. What can you tell me about this please and would it be any harm to try them out on my father? ANSWER Your father’s doctor is correct to anticipate that by taking sinemet, it should improve his quality of life. Unfortunately not all patients respond to the medication, but the majority will find at least some improvement. It is certainly true to say that Parkinson's is a progressive condition; I think what your father’s doctor was trying to say was that Parkinson's is slowly progressive, and if you get it at age 75, the disease is unlikely to cause you major problems in your natural life-span. Nicotine promotes release of dopamine in the brain, which will benefit patients with Parkinson's. However there are much more efficient treatments available (including dopamine patches); I would NOT recommend he use nicotine patches to treat his Parkinson’s without consulting his doctor first. QUESTION I found that I had Parkinsons in December ‘07 and I QUESTION My Dad has had Parkinson's since Aug 2011. He recently started on a Neupro patch. He has being having really bad Hallucinations - I know it is a side effect of the patch but it happens nearly every night now & we all are upset as we don’t know what to do for him. Is there anything at all we can do to help him? ANSWER You should visit your doctor urgently and discuss alternative treatment options. While all Parkinson's medications have the potential to cause hallucinations, some are more prone to do so than others. Your doctor will also check to make sure there are no other reversible causes of hallucinations (such as other medications). was put on a number of different meds including a patch and none of them really worked I have been on Sinemet plus for 9 months and over the last month I have cut my dose down to one a day and still feel the same as I was on 3 per day. I feel that they are doing me no good at all; I’m just the same on one as three. Can I be risking my health by not taking any Parkinsons’ drugs? Is there any other drug that might be of benefit to me? ANSWER You do not state your age. Older people tend not to respond to the medications quite as well as younger patients. However, given that you have the disease for 5 years, I certainly would have expected some response to sinemet, or at least some worsening of symptoms by reducing the dose. You are not necessarily putting your health at risk by not taking the medication, but you should inform your doctor what you are doing. In the first instance I would visit your specialist and have them review the diagnosis. www.parkinsons.ie Summer 2012 13 BRANCH NEWS South Kerry Branch Senator Marie Moloney, Michael Healy Ray TD and Branch President, Grace McCrae We wish to thank our Vice Chairman, Mike Moynahan, and his wife Eileen for the use of their vintage Mercedes, which we entered in the Rathmore St. Patrick’s Day Parade and we had four attendants pushing a patient in a bed with a doctor and nurse walking alongside it. We were delighted to win a cup and were welcomed at the reviewing stand by Senator Marie Moloney. We are now preparing for our trip around the ring of Kerry. Jack and Grace McCrae will be the guests at a Parkinson’s meeting in Somerset in July and they hope to bring back some new ideas. We wish to say a goodbye to Muriel Knight who is leaving Killarney for America, a very big thank you for all your work for South Kerry Parkinson’s Branch. We wish to welcome on board our new secretary Noreen O’Sullivan and wish her well in her new position. Contact: Grace McCrae 064-7758837 Galway Branch We held our most recent meeting on the 3rd Wednesday in May in the Clayton Hotel, Ballybrit, Galway and we have started Physiotherapy classes in Tuam and they have proved to be a great success. We will have our annual bucket collection in May all volunteers welcome. Contact Marie Cahill 087-7783825 Dublin Branch The Annual General Meeting of the branch was held at the Marine Hotel, Sutton on Saturday, March 31st and was very well attended. Our esteemed chairperson Ann Davis retired from that post and has been replaced by John O’Mahony. Ann has given sterling service to the branch over many years and especially over the past two as Chairperson. Thankfully her wise counsel will not be lost as she will continue to serve on the committee. Other members elected were, Isabel Somerville, Michael Long, Ann O’Brien, Bernadette Long, Aidan Somerville, Sandra O’Sullivan, Margaret Mary Byrne, Tim Kelly, Elaine Howard and Ann Shuttleworth. After the meeting Parkinson’s Nurse, Alison Cashell, gave a very interesting talk and answered many questions from the audience. The next general meeting for members takes place at The Tara Towers Hotel, Booterstown on Sunday, May 20th, 2012 at which we hope to have a prominent medical specialist as speaker. Members will receive written notice in due course. Contact: Isabel Sommerville 01-4909646 14 PARKINSON’S IRELAND Tipperary Branch We would like to thank Dr. Helena Moore, Consultant Neurologist, for coming to the Abbey Court Hotel, Nenagh, Co. Tipperary on Friday 27th of April, and also thanks to Orion Pharma for sponsoring this evening. Our very first Parkinson’s meeting and AGM was held in Roscrea. Many thanks to North Tipperary leader partnership for their venue and enlightening talk on positive mental health on Tuesday 13th of March. Officers elected were Chairperson Michael Burke, Vice Chairman, Oliver Nolan, Secretary, Mary Carey, PRO, Marian Burke and Treasurer, John Carey. Many thanks to Fr. Enda Brady for raising €675 for the Tipperary Branch. Happy summer holidays to all our members. Contact Mary Carey 086-3916726, Michael Burke 087-28647987 Mayo Branch The Mayo Branch held two media interviews for Parkinson’s awareness week. Marian Newman, Chairperson of the Mayo Branch, was interviewed by the Mayo News and her interview was entitled ‘Life after Parkinson’s’. And an interview on Midwest Radio with Marian Newman and Josephine Molloy discussing the disease from a person with Parkinson’s and carers/spouses view point. Other events planned: April - Talk by Alison Cashell, Parkinson’s nurse and May - Bio Energy talk and demonstration. Still to be scheduled - Talk by the Citizens Information Board on ‘Know your Rights as a Parkinson’s Patient’. We are in the process of conducting a study into ‘what we as people with Parkinson’s’ have in common. Do we have any/many common traits. This study will be conducted in a number of stages: Brain storming workshop with a small group of members, results of workshop put into a questionnaire format and sent to all branch members to be completed. Results of questionnaires will be compiled and presented soon. And finally, we will soon be planning our fund raising event for 2012. Contact: Vincent McDonnell 086-8305907 North Kerry Branch At a very pleasant function recently in Listowel, Beauty Therapist, Mary Lynch, formally presented a cheque to Branch Treasurer, Michael Collins, from proceeds of a hugely successful fashion show which she had organised. Mary was accompanied by her father, Christy, who assured us of the family’s continued support. Availing of Parkinson’s Awareness Week we held our annual flag day on the 14th April in Listowel. Fortunately it remained dry but some of our intrepid volunteers had to endure a biting wind and, reportedly, did not thaw out until the following Monday. Our collectors comprised a great range of our friends and acquaintances and we are very grateful for their support. As well as collecting there was a considerable amount of chatting with our fellow townspeople and undoubtedly the profile of Parkinson’s benefitted. Our genial Chairman, Liam Walshe, is a story-teller of note, in a county of noted story-tellers. He brightened up the day for some of his companions on the beat. His anecdote concerning the farm inspector and the mutton chop had his audience in tears of laughter. BRANCH NEWS The collection in Manor in Tralee was undertaken by Sara Benison, from Ventry, who was on the Parkinson’s team that conquered Kilimanjaro. Sara was joined by our committee member, Joan Rogers. Joan reports that they had an excellent day. We feel great work has been done and ultimately carers and patients will benefit. As we go to press we are planning an information session with Senior Physiotherapist, Olanrewaju Olawale, (Wally), who has been involved with Parkinson’s related research and who has expertise in an exciting and novel programme specifically geared to people with Parkinson’s. We would hope to hold the event in early June but will publicise it when details have been finalised. Contact: Jerry Hurley 087-9785438 Louth/Meath Branch We are currently organising an information night with Brian Magennis, Parkinson’s Disease Nurse Specialist, Mater Hospital Dublin. We also hope to start Yoga classes in mid-May Louth/Meath Branch members and look forward to meeting with more people with Parkinson’s at this meeting. Contact Maurice O’Connell 087-7512608 Cavan/Monaghan Branch Our Annual outing took place from 30th of April to the 2nd of May, to Ballina, Co. Mayo. We also visited the Ceide Fields. The 6th Annual Mollie Smith walk took place over Easter. The walk was started by Sean McKiernan Cathaoirleach of Cavan Co. Council. Approx 50 people took part in the 10k walk. Physiotherapy classes have commenced under the guidance of the HSE for persons under the age of 65yrs in Cavan. We would like to wish the new CEO every success in their new role and extend an invitation to him to visit our branch in the future. Contact: Paddy Conaty 049-4332821 Waterford Branch The Waterford branch held a collection day on 14th April in the City Square Shopping Centre, Waterford. A very big thank you to all who contributed on the day. We handed out a lot of information about Parkinson’s disease on the day which people found helpful. Contact: Teresa Peacock 051-383685 Cork Branch We held our A.G.M. on 22nd April and all went well. We wish to thank all our fundraisers and everyone who contributed with donations. The guest speakers were Margaret Mullarney and Andrew Curran, who were inspirational in relating their personal experiences. Our next coffee morning is on 28th May in Oriel House, Ballincollig. A very big thank you to Catryn Power for all her efforts. The Cork Neuro Science group are presenting a series of public lectures and the first was held on 1st May in U.C.C and was well attended by over 100 people. Dr Sean O’Sullivan, Consultant Neurologist, C.U.H. is setting up a movement disorder clinic in C.U.H. in May. He explained recent research and clinical trials that were very encouraging. Dr. Aileen O’Sullivan was the 2nd speaker. She leads an active research group based on bio-science in U.C.C. and she has worked with Parkinson’s research for over 16 years. She spoke on neuro protective therapies which may have the potential to slow or even reverse the progression of Parkinson’s disease. They were recently funded by the MLJ Fox Foundation and are carrying out trials and need volunteers and we would urge people with Parkinson’s to come forward and help to further this work. They are also looking for non PD people. Our next speakers meeting will be held on 10th June in Sacred Heart, Victoria Cross at 3pm. Our picture shows: Pat Walsh (left) and John Curtin (right) of the Cork Branch with Chairman, Pat O’Rourke (centre) at a recent Patient Information Day in Bantry. We will hold our Annual Outing on 1st July to the Glen of Aherlow. For further details contact Pat or Ted Contact: Pat Walsh 087-2460853, Ted Horgan 087-2375558 PALS Branch PALS held its AGM in March and has some new committee members, and one resignation. Our committee will miss Frances O’Sullivan who brought a wonderful sense of humour to the table along with many good ideas. Remaining are Eddie O’Brien, Cathy Pollard, Brian Pollard, Rebecca Kelly, Tim Kelly, Ann Keilthy, and incoming are Eugene Cashell and Suzanne O’Rourke. We held our collection for Parkinson’s Awareness Week over two days in early April and will be presenting the proceeds to PAI in due course. With thanks to Tim Kelly for arranging it. We are working on organising a social outing for later in May and will be contacting all our members once arrangements have been made. If any of our members have an idea for a get-together or meeting that we have not tried before, let any one of the committee know. Do come along to the PAI Weekend Away in Kilkenny! Details in this magazine! Contact: Ann at 087-2853117 New Patient information Videos We have new patient information videos available on our website www.parkinsons.ie. These videos, introduced by our nurse Alison Cashell, feature Brian Magennis, Parkinson’s Disease Clinical Nurse Specialist at the Mater Hospital, Dublin, talking about causes of sudden deterioration in Parkinson’s, and how they are managed. There are also excellent videos from David Walsh and Sinead O’Kane, people with Parkinson’s, speaking about their experiences of the disease. We would like to thank all those involved for giving up their time and sharing their experiences. Our thanks also to GSK Pharma for their assistance in recording and producing these videos. www.parkinsons.ie Summer 2012 15                    POWERFUL AWARENESS VIDEO LAUNCHED The brainchild of Hugh O’Conor, this video is short but very powerful in its message. It features David Walsh, Andrew Curran, Margaret Mullarney and Harold Huberman. The video was directed by Domhnall Gleeson & Hugh O’Conor and written by Domhnall Gleeson, Mark Huberman & Hugh O’Conor and was produced by Andy Bradford for Sweet Media. It has accumulated over 1,400 views so far and we would love to see it grow to over 5,000 in the next month. This video, and several other related videos are featured on our website www.parkinsons.ie and on our parkinsonsireland channel on YouTube. A big thank you to everyone who made this video such a great success, it really is brilliant!