3rd Munster Parkinson’s Patient Conference

AUTUMN 2015www.parkinsons.ie

Parkinson’s Associationof Ireland

www.pa r k i n sons . i e

Parkinson’sAssociation of Ireland

l World Parkinson’s Congressl Did Somebody Call a Cab?l Social Gathering Agenda l A Life of Adventure with

Parkinson’sl Upcoming Information Days

l 3rd Munster Parkinson’s Patient Conference

l Launch of Monaghan Branchl Branch Newsl Understanding Parkinson’s

IN ThIs IssueIN ThIs Issue

Jacques and Susan Deneault

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Dear members

I hope you all had a very enjoyable summer. I have had the opportunity to meet all branch committees and many of the membership of the PAI to date and thank you all for the warm welcome and for sharing your ideas and issues with me. You can be assured that I will direct your concerns to the appropriate channels.

The National Office and Dublin branch were delighted with the outcome from negotiations with Tallaght Hospital. The Dublin branch have funded the PD nurse specialist for several years. Following discussions, it is now agreed that for the balance of this year Tallaght hospital will be the main employer of the nurse specialist and from 2016 the post will become permanent and fully funded by Tallaght Hospital. This will secure our Parkinson’s Nurse Specialist post and she can be reached on the freephone number 1800 359 359.

We are delighted with the feedback from the nationwide survey “Tracking Parkinson’s 2015” conducted by Dr Richard Walsh. To date we have had over 600 replies. We have issued another 1,000 copies to hospitals and clinics to target non-members. We will be presenting all the information gathered at an open meeting in early 2016. Thank you for taking the time to fill this out.

The PAI has signed up to the “pact for patient safety” launched by the Minister for Health, Leo Varadkar. The pact brings policymakers together to drive commitment from health authorities towards better protection of patients from unnecessary harm, led by the Irish Patients Association.

Congratulations to Ted Hogan and the entire Cork branch for a very successful information day. The day

was extremely informative and very well attended. Minister Kathleen Lynch attended and was lobbied by the Cork branch and myself to address the issue of the lack of a nurse specialist in the Munster area.

I strongly encourage you to attend the upcoming information days in Kildare on 4th October, Galway 18th October and Donegal in late October. Agendas for each day on pages 8 and 9.

Don’t forget the social weekend in the Hodson Bay Hotel in Athlone on 19th, 20th September, the full agenda can be found on page 5.

I will be representing the PAI in Surrey UK in September at the European Parkinson’s Disease Association (EPDA ) Conference. I will update you on the website and the winter magazine.

The National office has made a funding submission to the Minister for Health, Leo Varadkar and I will keep you posted on this issue.

One of the issues raised across the country is the lack of information regarding advanced therapy. We have received funding to produce DVDs and information leaflets on advanced therapy.

I hope you like our new pop up banners designed to encourage shared branding among the branches.

Congratulations to Martin Kruger, the chair of the new Monaghan branch launched on 26th June. We wish him every success and a big thank you to Paddy Conaty and the Cavan Branch for all the support offered to Monaghan over the years.

I look forward to meeting you again at the upcoming events.

Warmest regards

Paula Gilmore

A word froM oUr CEo

CON

TEN

TS 2 A Word from our CEO

Paula Gilmore3 World Parkinson’s Congress4 Did Somebody Call a Cab?

Goaccessible.com5 Social Gathering Agenda

Saturday September 19th

6 A Life of Adventure with Parkinson’s Jacques Deneault

7 Event Guide8 Upcoming Information Days

A series of Conferences

10 3rd Munster Parkinson’s Patient Conference

12 Launch of Monaghan Branch Martin Kruger

13 Branch News18 Understanding Parkinson’s

Paula Gilmore

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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.

Parkinson’s Association of Ireland, Carmichael House, North Brunswick Street, Dublin 7 Tel: 01 872 2234 Email: info@parkinsons.ie Web: www.parkinsons.ieFreephone Helpline: 1800 359 359

Company registered in Ireland No. 123532, CHY No. 10816Registered address as above

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Are you interested in keeping up to date with the latest Parkinson’s research or learning new techniques to improve your quality of life? or how about just meeting other people with Parkinson’s and hearing their stories?The 4th World Parkinson’s Congress (WPC) could be the event for you. The WPC is a unique conference that takes place in different cities every three years and is open to anyone with an interest in Parkinson’s. Each congress lasts four days, during which time attendees can choose from the many lectures, discussions and other activities on offer. The 2010 and 2013 congresses each attracted an international audience in excess of three thousand people from a variety of backgrounds.

I attended the 2013 World Parkinson’s Congress in Montreal, having being diagnosed with Parkinson’s seven years ago at age 29. After overcoming my initial shock at the sheer size of the congress and what it had to offer, I signed up for various lectures and activities that interested me.

The congress provided a platform where my questions could be answered and a place where people could relate to what I was going through. There, I wasn’t a Parkinson’s patient – I was a person with Parkinson’s.

The whole experience was extremely beneficial to me; not only did I learn a lot of new information but I also met some wonderful people. I couldn’t help but be inspired by the many individuals who were there to take a stand against Parkinson’s.

When the conference was over, I realised that the WPC isn’t just an event that takes place every three years, but a worldwide community of people who share and support each other in the vision

of a better life with Parkinson’s. That congress provided me with hope for a better future, the confidence to live my life and the joy of new-found friends.

There are many reasons why you should think about attending the next WPC in 2016, but let me summarise what I believe are the five most important. The WPC will give you a chance to:

1. Interact directly with world-renowned experts in the field of PD.

2. Learn about new and existing treatments for Parkinson’s from leading clinicians and researchers.

3. Discover a wide variety of PD resources, tools and contacts.

4. Share strategies and insights for living and coping effectively with Parkinson’s.

5. Create lasting relationships and support networks with other people with Parkinson’s, their families and carers.

You may feel that Portland is a long way to go and will be an expensive trip. You’re right; to get there from Ireland requires a minimum of two flights each way. But if you are struggling with Parkinson’s, or someone you know is struggling, let me ask you: can you afford not to go?

The 4th World Parkinson’s Congress will be held in Portland, Oregon, USA from 20 – 23 September 2016. Full details about this conference and how to get there are available at www.wpc2016.org.

WorlD ParkinSon’S CONGRESS 2016

www.parkinsons.ie

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DID SOMEBODY call a cab?Have you ever struggled to find suitable wheelchair accessible transport, hotels or things to do? It’s a common problem faced by disabled people all across the country and on 16th of June 2015, we launched Goaccessible365.com to solve that very problem.We provide a web and mobile-based search facility to quickly and easily source all forms of wheelchair accessible travel, raising standards, promoting independence and pushing social change.

Imagine being able to see all the wheelchair accessible transport in an area with direct contact details for the driver, their working times, accessible information on the vehicle, feedback from other users and a photo of the vehicle so you know what to expect before it arrives.

Imagine being able to find wheelchair accessible hotels throughout the country in a couple of clicks and book your wheelchair accessible room online while also indicating your specific needs.

Imagine then arriving at your destination and being able to see which venues and tourist attractions in that area were fully accessible to your needs.

Well that’s what Goaccessible365.com does.

Our aim is to make travel as easy and straightforward for a disabled person as it is for anyone else in society. This all began with

Wheelchairtaxi.ie and Goaccessible365.com is the evolution of that brand. In the two-year

existence of wheelchairtaxi.ie we were the number one used resource in the country for all forms of wheelchair accessible transport and nominated for numerous awards including 2

Eircom Spider Awards in Ireland’s Best listings category. In April this year we won a David Manley award getting top prize in the whole social category. Most importantly however we helped countless amounts of people find transport which suited their needs.

With Goaccessible365.com we want to expand that service further and provide a complete travel resource for wheelchair users. No longer should someone be stranded without access to transport. No longer should someone turn up to their accommodation to find out it doesn’t meet their needs and no longer should someone arrive at a venue to then be told that they can’t get in.

That’s also why we see advocacy as an important part of this social enterprise. Transport is essential to people’s lives and even more important for someone who is disabled. Wheelchair taxis, which are the only real public door-to-door transport system in the country, account for a mere 5% of the entire taxi fleet and this is not good enough. We want to improve this significantly and are thankfully beginning to make some progress. Last year we helped change a number of regulations to make it easier and more affordable to purchase a wheelchair taxi and also helped to introduce a grant scheme for drivers. This saw an extra 128 wheelchair taxis on Irish roads. We want to have an even bigger impact this year and have a number of plans in place on how to achieve this.

we are delighted to have Volkswagen as Goaccessible365.com’s overall partner in helping us to ‘Push Social Change’ and we see them as a perfect fit considering the Caddy Maxi is one of the top wheelchair accessible vehicles out there. We are also delighted to have the Parkinson’s Association of Ireland as one of our official charity partners.

We hope you find our service useful as we have put a huge amount of work into it and I’ll finish with this final question - are you ready to go accessible?

“FACING THE CHALLENGE OF PARKINSON’S TOGETHER”

Social GatherinG aGenda

AGENdA

10.0am - 10.30am Arrival/Registration

MorNING SESSIoN

Chaired by Nicola Kavanagh Parkinson’s Nurse Specialist10.40am Welcome Address. Paula Gilmore, CEO, Parkinson’s Association of Ireland10.45am - 12noon Dr Richard Walsh, Consultant Neurologist, Tallaght Hospital Managing Medications. Your questions Answered12noon - 1.00pm Aisling Keogh, Speech & Language Therapist, Speech Matters The Role of the Speech & Language Therapist in Parkinson’s.1.00pm - 2.00pm Lunch

AfTErNooN SESSIoN

2.00pm - 3.00pm Set Dancing/Drumming Workshop3.00pm - 4.00pm Drumming/Set Dancing Workshop4.00pm - 4.45pm Yoga through the chair7.30pm Banquet Dinner/Live Entertainment/Fun & Games

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Hodson Bay Hotel, AthloneSaturday September 19th 2015

option one option tWo €99pps €25 pp

To Include: To Include:Information Update Information UpdateLunch LunchAfternoon Activities Afternoon Activities Gala Dinner & EntertainmentBed + Breakfast.Single room supplement for Sat night is €119.00

There are still some places available. contact Pai for details.

If people wish to stay an extra night the Hotel are offering a reduced rate of €59pps

To Book call the Hotel directly on 090-6442000

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A LIFE OF aDvenTure WiTh ParkinSon’SI have just returned from a brilliant cycle ride along the southern coast of Ireland with my wife Susan in our endeavor to bring awareness for Parkinson’s.My name is Jacques and I live with Parkinson’s. I was diagnosed in February 2011 and still to this day am not taking any medications for my condition and consider myself extremely fortunate notwithstanding. I am French Canadian from Ottawa, Canada and Susan is originally from Burnley in England. I am very active for my age (67) and in particular enjoy badminton, cycling & hiking and am convinced that my level of fitness is a major contributing factor in my better coping with a neurological disorder that I knew very little of 5 years ago.

On Sunday the 15th of May Susan and I set off for a 12 day cycling journey that would take us from Dublin and all the way to Killarney staying overnight at B&Bs and hotels in Bray, Arklow, New Ross, Dungarvan, Middleton, Kinsale, Skibbereen (in what was voted as the most unusual B&B in Ireland), Bantry, Kenmare and Killarney.

We were fortunate with the sun in our face, the coastal winds swirling around us but mainly on our backs and we felt only a few gentle rain showers.

What an incredible and rewarding trip it was. We met lovely and interesting people along the way, exchanging and sharing thoughts regarding

Parkinson’s. We felt the warmth of the Irish people in their generosity, hospitality and humor and we were sustained, at the end of long days, by the wonderful local food and drink (especially fresh seafood and local hops) and Irish music. We found the motorists sharing the road with us most patient & respectful with their occasional encouraging toot.

Special thanks to the very hospitable and professional Mr. Paul McQuaid of Phoenix Park cycles in Dublin. We rented our sturdy bikes from him for the trip at a very reasonable price at his easy access store at the entrance of Phoenix Park, conveniently located by the train & bus station. www.phoenixparkbikehire.com

We had originally planned to cycle the circumference of Ireland but realized that this was better done in 2 visits because of time constraints and also because we wanted to take a journey that was more of a pilgrimage than a marathon, so our next planned long distance ride in Ireland will start in Shannon and continue the journey North along the coast back to Dublin.

My reflections:

I often look back and wonder where, when, how and why I managed to contract Parkinson’s. No one in my immediate family have Parkinson’s, however a brother and niece suffer from Cohn’s disease and according to my doctor and researchers in Ottawa, Parkinson’s and Crohns disease share a genetic linkage.

As a child I used to love playing in what used to be a landfill where lots of different chemicals and hazardous materials had been dumped through the years. As a matter of fact it took 50 years of seepage and exhaust stacks before the city finally approved the construction of a housing project on the site.

I come from a blue collar town and was raised in a modest middle class family. We were not poor but definitely not rich. My parents and five siblings lived with my grandparents in an old but comfortable home. I suspect there was asbestos in the walls and mold in our musty cellar where I loved to play as a child and later as a teenager I had to stoke the furnace with coal from our basement coal room.

by Jacques deneault

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A LIFE OF aDvenTure WiTh ParkinSon’SAre these areas of concerns or am I totally off the mark?

There’s more; during my 41 year career in the Canadian Air Force I was posted to some remote but interesting places. One of those was a radar site 700 miles north of Ottawa. At the Canadian Forces Radar Station Moisie we were subject to pesticide spray in industrial quantity twice a day at 6 am and 6 pm. The bugs were really bad and spraying was the only way to control the black fly and mosquito infestations. The only strange and alarming thing with that was that we were told to keep our children and pets indoors whilst they sprayed however there was no restriction to adults. As a matter of fact I remember losing site of the ball when playing rounders because of this huge cloud of DDT making its way across the playing field.

As a young recruit I was subjected to mustard gas testing. We were ordered to don our gas masks, enter the chamber and after a few minutes told to remove our masks. We rushed out looking for fresh air.

Is it me or could these experiences with exposure to toxins, concussions from organized sports & martial arts be causal?

On a positive note a very special thanks to Sabrina & all the other devoted & hard working folks in the Parkinson’s Association of Ireland who provided guidance and support (and tee shirts) for our biking challenge.

I may have Parkinson’s but Parkinson’s doesn’t have me!!!

EVENT GUIDEDublin City Marathon The Dublin City Marathon will take place on October 26th. We have had many people throughout the years running in aid of Parkinson’s Association of Ireland. This year is no different, we have had some inquires already wanting to join Team Parkinson’s.

If you would like to join in and run for us in this fantastic event, please contact Sabrina on 01 8722234 or mail Sabrina.fagan@parkinsons.ie for a sponsorship pack free of charge.

lookinG For iDeaS on hoW To FunDraiSe?

Why not visit our website www.parkinsons.ie and see our A to Z list of exciting fundraising ideas

VHI Mini Marathon 2015.

A very big thank you to all the ladies who braved the wind and rain to participate in this year’s VHI Mini Marathon.

Your support in raising awareness and funds for the association allows us to continue our work.

A gentle reminder to send in your sponsorship as soon as possible.

Donegal Information AfternoonAn information afternoon will take place in November in Donegal.

All members of the Donegal branch will be notified in advance of the meeting.

Please visit our website, www.parkinsons.ie to see details, nearer the date.

IREDUO150375 Date of preparation: July 2015

Keadeen Hotel, Newbridge, Co. Kildare

Sunday 4th October 2015 10.00am to 4.00pm (Lunch & Refreshments served throughout the day) Registration 10am & Official Opening 10.30am

• Dr. David Bradley, Consultant Neurologist, St. James’s Hospital

• Dr. Eavan McGovern, Specialist Registrar Neurology, St. Vincent’s Hospital

• Ms. Patricia O’Connor, Yoga Session

• Move4Parkinsons – 5 Elements

• Lunch

• East Midlands Parkinson’s

• Patient & Carer Perspective

• Ms. Suzanne Donnelly, Physiotherapist, Naas Hospital

• Ms. Geraldine McEleney, Social Worker

To register Contact Pauline / Sabrina on 1800 359 359

before 25th September 2015

Agenda

• Feel free to bring along a family member or carer • Free admission • For further information or queries contact

Martina (087) 6550176 or Marian (085) 2112973 or John (087) 2712448

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As part of our ongoing endeavors to highlight the challenges faced by People with Parkinson’s, the Parkinson’s Association of Ireland in conjunction with Abbvie Pharmaceutical, are holding a series of conferences over the winter months. The first of

two conferences confirmed for this coming october will be held in the Keadeen Hotel, Newbridge, Co. Kildare on the 4th october. To register contact Pauline or Sabrina in the National office on 1800 359 359 before 25th September.

uPcominG INFORMATION DAYS

Parkinson’s Associationof Ireland

www.pa rk i n sons . i e

Parkinson’sAssociation of Ireland

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The second conference will take place on Sunday the 18th october in the Clayton Hotel in Galway. To register for this event contact Marie Cahill on 0877783825. Both conferences will cover a wide

variety of topics and workshops specific to People with Parkinson’s. There will be several speakers on both days and lunch and refreshments will be served each day.

uPcominG INFORMATION DAYS

Parkinson’s Associationof Ireland

www.pa rk i n sons . i e

Parkinson’sAssociation of Ireland

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of a Munster Parkinson’s Conference 3 years ago, was our opening speaker and spent a very useful session answering questions which had been submitted in advance. He gave detailed answers to all questions which the attendance found informative. In his second session Sean interviewed 3 People with Parkinson’s who have benefited from advanced therapies including Deep Brain Stimulation, Apomorphine pump/pen and Duodenal pump. All 3 gave detailed accounts of the preparation, surgery/fitting and ongoing management involved and how they have improved their quality of life.

Catherine Dineen, Clinical Psychologist gave a very practical presentation on the topic of Improving Your Mental Health. She emphasised the importance of sleep, diet and exercise to good mental health.

The 3rd Munster Parkinson’s Patient Conference took place on friday 12th June last at oriel House Hotel, Ballincollig, Co. Cork and was attended by 150 people, many of them, People

with Parkinson’s (PwPs). The Conference was opened by Kathleen Lynch Td, Minister of State, department of Health who has special responsibilities for people with disabilities. She acknowledged that a diagnosis with Parkinson’s can instill fear in Parkinson’s patients but encouraged all PwPs to seek help when necessary. dr. Sean o’ Sullivan ( CUH) and Ted Horgan (Cork Branch) both highlighted the absolute necessity for a Parkinson’s nurse Specialist in Cork and while Minister Lynch did not make any promises, she undertook to raise the matter with senior staff in the department of Health.

She also encouraged PwPs to be aware of all the services available to them and to continue to make a valuable contribution to their local community by staying involved as much as possible.

Sean O’ Sullivan (Consultant Neurologist CUH), who was instrumental in launching the concept

3RD MUNSTER PARKINSON’S PaTienT conFerence

Nicola Kavanagh, Parkinson’s Disease Nurse Specialist emphasised the importance of managing medication

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Cork Branch member and Professor Emerita of the University of South California, Kathleen Reardon used her wealth of experience while discussing how we should talk about PD. Indeed we may see an article on this particular subject in a future edition of this newsletter which would be well worth reading. Among her key points were the following: -If we can communicate well with our medical team rather than leaving doctors guessing about our symptoms, it will help us to get the best possible medical care. Good communication will also ensure we feel confident and relevant. We are 75% responsible for how people communicate with us. Communication is a bit like chess – every move we make limits or expands the choices of others when communicating.

Elaine Harrington gave a very practical talk on Parkinson’s and Physiotherapy. She highlighted the benefits of exercise which include

improving balance, improving walking, reducing falls, improving mood as well as improving quality of life. She stressed that exercise is not a one size fits all concept and that when newly diagnosed, PwPs should consult a community physiotherapist to devise a personalised Self Management Exercise programme.

Paul Carey gave a very personal insight into his own experience of being diagnosed with Parkinson’s and his emotional journey since diagnosis which the attendance really appreciated. Nicola Kavanagh, PDNS, at Tallaght Hospital gave a very practical talk on how to manage medication and her presence at the conference really highlighted the absolute

necessity of having a Specialist Parkinson’s nurse appointed in Cork as soon as possible.

We also had a carer’s session which was well presented by Mary

Aherne and well received by the

attendance. Our new CEO, Paula Gilmore closed the Conference which was

considered by all to have been

an excellent event.

Parkinson’s Association of Ireland CEOPaula Gilmore in conversation with Kathleen Lynch TD,

Minister of State, Department of Health

Professor Emerita of the University of South California, Kathleen Reardon discussing how we

should talk about PD

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LAUNCH OF THE monaGhan BRANCHMy name is Martin Kruger, a 69 year old South African, now happily living in Ireland. I was diagnosed with Parkinson’s disease in August 2014. Initially though, I had an MrI scan at drogheda Hospital with two separate doctors who gave me different diagnoses. This prompted me to seek private medical help and a 3rd opinion. The doctor I saw referred me to dr. Brian Murray and after one consultation with him I was correctly diagnosed with Parkinson’s. The diagnosis was a great shock to me. I didn’t leave the house for a month! I felt depressed, suffered from anxiety attacks and lost a lot of weight! I felt hopeless to be honest. However, help arrived in the form of the Mental Health Services. They were fantastic and helped me on the road to recovery! During this time, I saw a man on TV by the name of Paddy Conaty. Paddy is the Chairman of the Cavan Branch of the Parkinson’s Association. I decided to contact him and we planned a meeting in Cavan. Upon meeting, I told him my story and explained that my ambition was to start a support group in Monaghan. An excited Paddy introduced me to the Parkinson’s Association of Ireland.

I was assisted by them and in particular by a lady named Pauline and without whom I could not have achieved as much as I did in such a short period of time. A huge thanks goes to her for all her help. During the process of setting things up in Monaghan, we really met the most wonderful people local to the area. Anna Murray became not only my help, but also a great inspiration! Anna and myself could not have been so successful in establishing the Monaghan branch if it wasn’t for several people which I think deserve a big round of applause for their kindness and help.

Firstly our thanks go to Julie Ann Sheridan of Northern Sound

Radio. She interviewed me 3 times, live on radio and I believe she was responsible for putting the Monaghan branch of the Parkinson’s Association of Ireland on the map! Further more, she also came to our latest meeting and did a series of interviews with Parkinson’s sufferers for us. Another huge thanks must also go to the Cavan branch for all their help and support too.

There are also several individuals that must get some thanks! Rory Geary for the photos and reports he did for us in The Northern Standard newspaper. Bill Goggins, the manager of the Teach Na nDaoine Family Resource Centre. Bill and his staff couldn’t do enough for us and in particular provided us with a lovely hall, tables and chairs, along with tea and coffee, at no cost to us at all! Thank so much to them!

We also have to thank our Parkinson’s nurse, Nicola Kavanagh. She attended our meeting and helped answer so many questions the dozen or so people who made it down to the meeting. The high light though, was a visit from the CEO of Parkinson’s Association of Ireland, Paula Gilmore. We were honoured by her presence and will keep her up to date with how the branch continues to grow in the future.

This journey has been filled with so many wonderful things and people. One highlight in particular was on the 11th April 2015, I joined 500 people for the Parkinson’s awareness walk in Dublin. Just after the event, many of us were chatting freely about the disease we had, and why not, we were all in the same boat. It was a fabulous and positive event to have attended.

The Monaghan branch will be contributing to the Parkinson’s Association of Ireland’s quarterly magazine and we hope that this will help raise

awareness for us, but also help more people out there facing Parkinson’s Disease, after all that

is what it’s all about.

Thanks to all involved for making this all become a reality.

God Bless, Martin Kruger 042 9752972 / 086 8969075

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doneGal BranchThe branch would like to thank most sincerely Naomh Phadraig GAA Club Malin for their generous donation of €1310 recently. The money came to the branch via one of our members, Maeve McLaughlin.

We wish all our members an enjoyable summer and look forward to seeing them in the Autumn.

Contact Christina Derrig 071 9169128

GalWaY BranchWe are continuing our physio and Speech & Language classes throughout the summer as the members have gained great benefit from them. These classes are now taking place in four venues, Galway city, Athenry, Barna and Tuam.

We had a wonderful day at our summer lunch in the Clayton on the 28th of June, 2015. It was great to see over 100 people there and lots of new members.

We held a fundraising “Walk in the Prom” on Sunday 9th August, 2015. A fun packed day was had by all. All funds raised will go towards physio and speech classes for our members.

We are having a Parkinson’s Information Day in the Clayton Hotel, Ballybrit on Sunday 18th of October, 2015. This was a huge success last year and people gained and learned a lot from the day. For more information please see poster or contact Marie at 087 7783825.

We wish all our members a wonderful summer.

Contact Marie Cahill 087 7783825

Wexford BranchWell it’s been a great year for the Wexford Branch. In our first year we have established a yoga group, failed at setting up set dancing (lack of interest) but have the makings of a successful Argentine tango dance group and finally a group outing.

The yoga classes have been running for 9 months now and are going from strength to strength with new members joining regularly. The class meet every week and after a very good workout they all gather for a good old chinwag over tea/coffee and plenty of cake (biscuits are optional). Cost of 1 hour yoga session are €5 euro which represents extremely good value. Yoga classes are on

summer holidays till September when classes will resume.

Dancing, we unsuccessfully tried to set up classes for set dancing but due to lack of interest it was decided to cease classes but on another note we seem to have enough interest in members taking part in Argentine tango. Classes will run throughout the summer and hopefully continue thereafter. Again the cost of attending dance class is €5 euro, for further information contact Mike on 087 2690999.

Annual outing, we have just had our first annual day trip, which went exceptionally well with a full agenda for the day, taking in Tramore for a coffee/tea break and the coast road to Dungarvan whereby we stopped for lunch and for members to have time to walk the town. On the way back calling into Waterford Crystal. A very successful outing with thanks to all who made the day so enjoyable, looking forward to next year.

The next Branch Meeting will be held at the end of August, date to arranged.

Thank you all for your continued support and look forward to seeing old & new members at next meeting.

Contact Mike Murray 087 2690999

cork BranchCork Branch had a busy month of June with the 3rd Parkinsons Patient Conference taking place and once again it was a tremendous success with 150 people attending and an excellent team of speakers presenting practical information and advice. The Conference was opened by Kathleen Lynch, Minister of State , Dept. Of Health who undertook to take the ongoing issue of a parkinsons nurse at CUH to her senior officials for discussion. A full review of the Conference is featured elsewhere in this newsletter.

Our annual tour took place on 28th June and this year after a coffee stop at the Walter Raleigh Hotel our group of 50 headed east to Tramore where we had a beautiful meal at the Majestic Hotel. After an interval to walk the pier, amble around or sit and relax, we headed to Ardmore where many people enjoyed ice cream cones in the evening sun while others went in search of pottery or a refreshing walk along the beach or ventured towards the Round Tower Hotel

BrANCH NEWS

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where outdoor music was provided. It was acknowledged by all that the Committee had once again organised the tour well and a happy group of tourists arrived back in Cork at about 7.30 pm.

Our coffee mornings continue during the Summer and this year we also have received an invitation to participate in an Arts Workshop at the end of July at the Glucksman Gallery in UCC entitled “ Exploring Parkinson’s Through Art” which will lead to an exhibition opening on 7th September. On that date there will be a Parkinson’s Community Conference at UCC which has an excellent line up of speakers including Tom Issacs, founder Cure Parkinson’s Trust, Mags Mullarney, founder Move4Parkinsons, Paula Gilmore CEO of Parkinson’s Association of Ireland, Dr. Sean O’Sullivan, (Consultant Neurologist CUH/ Associate Lecturer UCC) and Professor Aideen Sullivan who has spent more than 20 years in Parkinson’s research. Both events are very exciting and we look forward to them. Email braintalk@ucc.ie for more details.

Ted Horgan 0872375558

dUBlin BranchOur Members Meeting in June was very well attended and Dr Richard Walsh, Consultant Neurologist, gave a very interesting talk followed by a question and answer session. We are very grateful to Dr Walsh for his time and expertise.

The next Members Meeting will take place on Sunday 11th October 2015 at 3pm in the Tara Towers Hotel, Merrion Road, Dublin 4. The speaker will be Clara Monahan, Music Therapist.

Carers workshopWe are delighted that Bloomfield Health Services are running a Parkinson’s Carers Workshop for Dublin Branch members. This will be a very informative day, run by Dr Andrea Higgins, Senior Neuropsychologist and the multi-disciplinary team at Bloomfield.

The workshop is on Saturday 26th September 2015 from 10am– 3.30pm in Bloomfield Health Services, Stocking Lane, Rathfarnham, Dublin 16. The day costs e20 including lunch.

To book a place, please ring Judy Williams on 085 1459064. Numbers are limited, so please book early.

Exercise classes:Northside - Community Ctr, St Anthony’s, Clontarf

Mondays 2.30pm to 3.30pmContact - Phyllis 01-8333569Restarting on Monday 14th September 2015.Southside - Sisters of Charity, DonnybrookThursdays 2pm to 3pmContact - Christine 01-4906704Restarting on Thursday 3rd September 2015.

Set dancingThe Set Dancing will re-start in September. Dates and details will be published in the Dublin Branch Autumn Bulletin.

The South dublin Support GroupContact – Aoife or Kevin 01 2893642Portmarnock/Malahide Support GroupContact – Tony Brady 087 7953302Contact Judy Williams 085 1459064

MonaGhan Branch On Friday the 24th of July 2015, we were invited by the manager of Super Value, Mr Cathal O’Gorman, in

Carrickmacross, to set up a table in the foyer of his extremely busy centre. We enjoyed spending the day bringing awareness to the people of Carrickmacross. We have also met two wonderful ladies, Sandra Geary and her mother Christina Dixon. For the last 4 years they have been running and sponsoring a coffee morning which became so popular it turned into an entire coffee day! These two wonderful ladies are on their feet all day serving tea, coffee and cake to those who come along. All proceedings go to various charities, one of those being us at the Monaghan branch. We recently had a call from the ladies to invite us to the “cheque presentation” ceremony. A huge thanks to Sandra and Christina! The Monaghan branch of the Parkinson’s Association of Ireland are eternally grateful! Contact Martin Kruger 042 9752972

cavan BranchCavan Parkinson’s branch recently held its AGM and the following people were duly elected onto the committee.

Chairman – Paddy ConatySecretary – Eileen Burke SmythTreasurer – Seamus MinoguePRO – Sandy Howard

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Trying to come up with new ideas for a social gathering and fund raising can sometimes be a difficult job to do but the newly elected secretary Eileen Burke Smyth came up with the suggestion that we go for ‘afternoon tea’ at St Kyrans just outside of Virginia town in Cavan.

We were shown to a lovely room with a spectacular view overlooking Lough Ramor It was such a shame that it was raining and we were unable to sit outside on the terrace and appreciate the view much more.

The tea comprised of dainty open sandwiches followed by scones and raspberry jam and finished off with dainty desserts washed down with pots of tea or coffee if you wanted.

At the end of all the scrummy food and after we had had our fill, the chairman Paddy Conaty stood up and thanked Eileen for organising the delicious event and welcomed us to St Kyrans. He then went to welcome our friends from Parkinson’s Fermanagh who came all that way to join us for tea. He then added that Monaghan had now formed their own branch and that hopefully would be meeting up with them on occasions also.

On a sad note Paddy informed us that our good friend Tom McNamara who had helped out on various trips away for many a year had recently passed away and a minutes silence was held as a mark of respect for him.

After this Paddy lifted the mood and went on to mention Mel Doherty and thank him for all his help especially when it comes to entertaining us on these types of get together and we had some joke telling, storytelling and a sing along with Mel. Mel also informed us that he will be starting up art classes at his home and possibly a singing group later in the year. Anyone who is interested in the Art classes or singing group please contact the Secretary.

After Mel had finished, Brian Lee sang a couple of songs and said that the yoga classes were still being held on a Friday morning. He then went on

and told us that his daughter Julie Cornell had won 1st prize on the annual Parkinson’s raffle and our congratulations was sent to her by all.

So after a lovely afternoon we said our goodbyes to all those that attended and started to make our way home looking forward to the next get together.

Contact Paddy Conaty 049 433821

tipperarY BranchOn Friday 19th June our support groups gathered for a social evening of song and dance including set dancing in The Park Hotel Clonmel. Coinciding with the South Tipperary Support Groups 1st Anniversary of its formation, it was a great opportunity for members across the County to meet.

The Branch organised a bus to collect members in North of the County stopping for a visit to Holycross Abbey and afterwards relaxing in Glasheen’s with tea & hot scones.

Our next stop was a visit to Glenconnor Garden Centre in Clonmel. The scent of flowers and shrubs was very evident in the bus on the homeward journey. Then it was onto the Hotel for refreshments and finger food and a wonderful evening of entertainment. Surprise guest on the night was Singer/Song writer Shay Healy who is an inspiration to us all in the Parkinson’s family. Our thanks to all concerned for a great social outing and all looking forward to a return visit to North of the county in the near future.

On Friday 8th May we had a special mass in the Pastoral Centre, Nenagh followed by a most enjoyable social evening.

The Branch’s annual mass was celebrated in the Community Hospital of the Assumption Thurles with young Upperchurch Musicians & Singers participating in the Mass & social evening.

www.parkinsons.ie

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SUrVEy 2015In the last couple of months you would have received a survey called TREATING PARKINSON’S, in the post.

We are encouraging all Parkinson’s patients to complete this survey and return to us in the freepost envelope provided.

You can also participate in this survey online. Please visit www.parkinsons.ie

For those who may find it difficult to complete the survey online by themselves you can contact our Freephone helpline 1800 359 359 and we will be happy to assist you.

The results of this survey will be presented at a meeting to be held in early 2016.

To date we have received over 600 completed surveys.

Future plans include Fundraising flag day in Clonmel where the Support Group meets on the 1st Tuesday of the month in the Mannilla Hotel, Clonmel from 10.30 to 12.30 pm. Contact Mary Finnegan 086 1224283.

In September information meetings with specialist guest speakers will commence in Nenagh, contact Marion Burke 087 2967296 Thurles or Mary Carey 0863916726, Roscrea/Templemore or contact Seamus Loughman 087 0545349.

Neurologist Dr. Helena Moore will be guest speaker at a meeting in Nenagh towards the end of September. (date to be confirmed)

Hope everyone has an enjoyable Summer and we look forward to meeting with all of you again In September.

Contact Marion Burke 0872967296.

South Tipperary Parkinson’s Support GroupTo be diagnosed with Parkinson’s disease is a life changing experience; entering the complicated world of living with a long-term illness is often confusing and daunting. Added to this, you feel alone and isolated from friends and family. I know this because four years ago I was one such person; newly diagnosed and looking for support. I attended The Tipperary Parkinson’s meetings, but the distance was too far.

I set up The South Tipperary Support Group to help and support those with Parkinson’s disease with assistance from Tipperary Parkinson’s Branch which is aligned to Parkinson’s Ireland. The support group offers people the opportunity to sit and share experiences of the disease with one another in a relaxed atmosphere. This is of great benefit as conversation often helps to clear misconceptions and bring hope to the newly diagnosed.

At the request of the members, guest speakers regularly speak at sessions to highlight different aspects of the illness, increase awareness of patient’s entitlements and update members on new developments in methods of treating the illness. Occasionally Parkinson’s patients will share their experiences on these treatment methods.

All pharmacies in South Tipperary have received fridge magnets, and are requested to put these magnets in the Parkinson’s patient next supply of medications. These magnets have contact numbers to ring if they need someone to lean on, and are the brainwave of fellow Parkinson’s person, Pat Feely.

Fund-raising events planned for the next few months, include a flag day in August, a vintage tea morning in November, and a ceili on St Stephens night.

Our meetings are held in Hotel Minella, Clonmel, on the first Tuesday of every month at 10.30-12.30.

All Parkinson’s people and their spouses, carers are very welcome.

Contact Mary Finnegan 086 1224283

eaSt MidlandS BranchEast Midlands Parkinson’s was delighted to welcome CEO of PAI Paula Gilmore to a recent branch meeting in Naas. All present wished Paula well for the future. After a brief meeting we had a

demonstration of set dancing from our members who attended set dancing classes in Abbeyleix. It was probably the largest meeting of the branch to date with over 40 members attending.

We are heading off on our annual summer trip from September 1st – 3rd. This year our tour is taking in the sunny South East and the historical county of Wexford. Looking forward to seeing you all there.

We have a busy autumn schedule coming up so here are some dates for your diary:

Following the huge success of the dance night held last year, one of our dedicated members

Mid WeSt BranchOn May 4th we had a very successful golf outing at the Limerick Golf Club. We were blessed with the weather, and it added to the big turnout. A special thanks

to all the people that played, both Ladies and Gentlemen, not alone members of Limerick Golf Club, but people from all parts of Munster. Please see the photo of the winner, MATT FLANAGAN, with a great score of 40 Points.

On Tuesday 12th May, we had our usual Monthly meeting in Limerick, the theme being “The Parkinson’s Lifestyle Toolkit” presented by Mags Richardson, Parkinson’s Clinical Nurse Specialist.

Once again, there was a great attendance of more than 80 people. It is great to see so many people with so much interest in these events, and they give so much information on various aspects of PwP illnesses. There was a great Q&A session in a lively atmosphere and thanks again to Mags for her expertise and understanding.

We have some events coming up in the coming months, including a big concert at The Southcourt Hotel in October. With the cooperation of The Lions Club, The Garda Band will attend and play for our enjoyment. Having attended one of their concerts, I can guarantee a great night. As we all know, we need funds to keep the Region going, so we would look forward to a big attendance from everyone.

For tickets, please contact Billy Rice at wrice.email@gmail.com or Eddie Butler at ejbutler@tinet.ie orP. J. O’ Driscoll at pjodriscoll11@gmail.comAidan O’ Connor at aidanoc00@gmail.com

As we are in Summer Recess at the moment we hope that everyone has a nice holiday, and we look forward to meeting ye again later in the year.

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Lena Roe has committed to running it again this year. It will take place on Friday 2nd October 2nd in the Castle Arms Hotel, Durrow, Co. Laois. Music by the fabulous Robert Mizzell. Admission is e15. Dancing from 9.30pm to 12.30am.

We had to postpone our annual Golf Classic in June due to weather conditions and it has been re-scheduled for 10th October in Abbeyleix Golf Club, Co. Laois. Teams of 4 will be €100.

East Midlands Parkinson’s in conjunction with PAI and Abbvie are hosting a patient conference in the Keadeen, Hotel, Newbridge, Co. Kildare on Sunday 4th October from 10 am to 4 pm. We have some fantastic speakers lined up for what promises to be a very informative day. Admission is free and lunch will be served. (For more information see article in this issue of the magazine).

Contact East Midlands Parkinson’s 085 2112973

SoUth kerrY Branch

A wonderful evening was given on the departure of the Methodist Minister in Killarney when 27 members attended and he was presented with a watch for all the work he had done for us in Killarney. Kathleen O’Sullivan of Cahersiveen presented us with half of a €12,100 cheque. A remarkable woman who has done so much work for charities. We had a slot on Radio Kerry for one hour to raise awareness about Parkinson’s,our long term wish is to get a Parkinson’s Nurse. We are looking forward to Nicola, Parkinson’s Nurse Specialist coming down to our September meeting. We have a Summer break with a trip on the horse and cart to Muckross House with a viewing of the house, then back to Killarney for our evening meal. We are so busy with new members and hospital visits and a great interest in our new Methodist Minister Rev Spence who will give us a talk later in the year.

Contact Grace McCea 064-7758837

yoUr CoMMENTS“I’m a Pharmacist/Chemist, aged 71, with Parkinson’s. diagnosed in 2008. I am writing to you to complement your organization. I believe you publish the best “Information sheets” I have seen.“ Stan Holley

www.parkinsons.ie

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UNDERSTANDING ParkinSon’S DISEASEAccording to the Parkinson’s disease foundation there are approximately seven to 10 million people worldwide living with the disease. After Alzheimer’s disease, it is the second most common neurodegenerative disease and its prevalence will continue to grow as the population ages. In Europe alone, the direct and indirect costs associated with the disease are in the region of 14 billion per annum. In countries with increasing life expectancy such as Ireland, it is a growing burden. A burden with personal, social and economic consequences that demand increased efforts be made to fund research focused of preventative therapies. Parkinson’s disease is a difficult and complex condition. Between 90 – 95% of Parkinson’s cases are idiopathic, which is a medical term meaning a disease has no known cause(s). The remaining 5 – 10 % are genetic and can be traced to familial heritage. Certain factors that are associated with a risk of developing the disease include exposure to environmental toxins, head trauma, but mainly just getting old. In fact, getting on in years is the most common feature of people with Parkinson’s disease and its onset is rarely encountered before the age of 50. However, the incidence rate increases greatly in the 60 years plus bracket with reports stating that 1-2 % of the population develop the disease in their later years. Repeated exposure to head trauma and environmental toxins including herbicides, pesticides and industrial chemicals are receiving a lot of attention in recent years as possible contributing factors to disease progression. However, no single risk factor can be attributed to Parkinson’s disease and any combination of the aforementioned risks can result in symptoms that differ between each individual. This possibility of many factors combining to cause Parkinson’s, helps

explain why everybody’s Parkinson’s is different.

The hallmark of Parkinson’s disease is impaired movements, including mainly rigidity and tremors. These are failings in what are known as the motor circuits of the brain – the brain circuits that allow us to move different parts of our body. It is important to add that other, incapacitating, non-motor related symptoms may be present also. These include sleep disorders, dementia, anxiety and olfactory dysfunction. Failings in the motor circuits are proceeded by a degeneration in the cells (neurons) connecting between two brain regions in particular. Under normal conditions neurons in the substantia nigra connect (project) to the striatum. Through a combination of electrical and chemical signalling, these projections release a neurotransmitter called dopamine into the striatum, and this enables voluntary motor movements to occur. In Parkinson’s’ disease these projections are absent or die out causing a disrupted flow of dopamine into the striatum and interruptions in the motor circuits. The question that still remains to be answered is how these substania nigra projecting neurons degrade and how can we protect them early on in life?

Figure 1: Microsensor developed at the Bioanalytics Laboratory at Maynooth University. Close up image details the

recording area of the sensor which is specific to detect one chemical and one

chemical only

The research undertaken by Dr Niall Finnerty and colleagues in the Bioanalytics Laboratory at Maynooth

University is focusing on the role that oxidative stress plays in the progression

of Parkinsonian symptoms. Oxidative stress occurs when there is

an increased production of toxic reactive oxygen/

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UNDERSTANDING ParkinSon’S DISEASEnitrogen species (ROS) that cannot be regulated sufficiently by the anti-oxidant system present in the brain. Ultimately, dangerously high levels of these ROS destroy proteins, lipids, DNA as well as inhibiting enzyme function in the mitochondria which eventually decreases the energy produced by neurons. This all results in a weakened brain energy metabolism which is becoming more and more accepted as one possible cause of Idiopathic Parkinson’s disease. Dr Finnerty has at his disposal a number of tiny microsensors (see Figure 1) that can provide continuous real-time recordings of how these ROS behave in a model of Parkinson’s disease. For the first time researchers can monitor how different neurochemicals change in a particular brain region as the disease progresses over time. What is distinct about this particular research is that the focus is on how the disease develops and progresses, as opposed to focusing on treating the symptoms. Dr Finnerty and colleagues have implanted a microsensor specific for measuring the reactive nitrogen species nitric oxide in the brains of freely moving rats (see Figure 2). The animal is then exposed to varying levels of a toxin that has been closely linked to causing Parkinsonian symptoms in humans. The findings from this work support a neurochemical switching process described previously by Professor Peter Wellstead (formerly at Maynooth) who is a co-author with Dr Finnerty. It is predicted that vulnerable neurons have a switching property that (when under sufficiently severe pressure from Parkinsonian risk factors) cause them to irreversibly change to a Parkinsonian state.

This so-called ‘pathogenic step’ is crucial to understanding how Parkinson’s starts in the brain. To get to this stage, Professor Wellstead’s research team built mathematical models and computer simulations of how they believe Parkinson’s disease progresses in the brain (http://www.systemsofparkinsons.org/). Specific measurements of neurochemical data where then collected by Dr Finnerty and colleagues

so as to test the idea of a Parkinson’s Switch. Analysis by Dr Finnerty’s team showed that neurochemical changes in the brain occur in the pattern predicted, and so support the switch theory. The current challenge is to use information from experimental data to tune the computer models of Parkinson’s in the belief that one day a combination of precise neurochemical measurement and computer simulation will provide a better understanding of how Parkinson’s disease works.

Figure 2: Implantation of the microsensor into the brain of freely moving rats exposed to toxins, allows for the continuous, real-time measurement of neurochemical changes as Parkinsonian symptoms progress

author – Dr Niall Finnerty, Sensors Development Unit and Neurochemistry Research Unit, BioAnalytics Laboratory, Department of Chemistry, Maynooth University, Co. Kildare.

email: niall.finnerty@nuim.ie

Text the word PARKINSONS to 50300 to donate €2

to Parkinson’s

100% of your donation goes to the Parkinson’s Association of Ireland across most network operators.

Some operators apply VAT which means a minimum of €1.63 will go to the Parkinson’s Association of Ireland.

Service Provider: LIKECHARITY.

Helpline: 0766805278

In Europe alone, the direct and indirect costs associated with the disease are in the region of e14 billion per annum.

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chrIsTmas Ideas from The parkINsoN’s assocIaTIoN of IrelaNdchrIsTmas Ideas from The parkINsoN’s assocIaTIoN of IrelaNdCHRISTMAS CARDS: A selection of Christmas Cards available from the National Office.

These bright cheerful cards are on offer for €6.00 per pack of 12 cards

PENDANTS: Newbridge Pendants make ideal Christmas gifts. €35.00

PINS: Newbridge pins €20.00

Parkinson’s Lapel Badges €3.00

PRICES DO NOT INCLUDE P&PParkinson’s Associationof Ireland

www.pa rk i n sons . i e

Parkinson’sAssociation of Ireland

Parkinson’s Association of Ireland launch Branch Specific

range of pull up banners