Parkinson’ss SPRING 2016 WEB.pdf · Parkinson’s Day 10th of April The main aim of our Unity...

DAA Charity of the Year Cheque Presentation

Spring 2016www.parkinsons.ie

Parkinson’s Association of Ireland

www.pa rk i n sons . i e

Parkinson’sAssociation of Ireland

l Parkinson’s Awareness Week 2016l Annual Social Gatheringl Brain GYM - Teasers Pagel National Conference/Patient

Information Datesl Keep Active by Barry McEntee

l Donegal Information Afternoon

l Pathway to Modern Healthcarel Parkinson’s and SystMedPDl Dublin Brain Bankl Branch News

IN ThIs IssueIN ThIs Issue

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Dear Members,

I know we have already passed St Brigid’s Day and we are well on our way towards St Patrick’s Day, but this is my first opportunity to wish each of you and your families and carers a Happy New Year.

2016 looks like being a very busy year. We have a number of events and activities already planned. The upcoming election is an opportunity to have your voice heard. It’s a rare opportunity for individual PAI members to exercise a role in shaping future State policy.

Two postcards have been placed in the magazine you have received. I am asking you to give them to your local politicians when they are canvassing in your area.

What do we want to achieve? Firstly, the PAI asks candidates for a commitment to address the underdeveloped neurological services in Ireland, particularly those in rural Ireland (for example, appoint more consultants, specialist nurses, ancillary staff). More specifically, you should highlight the urgent need to develop services for people living with Parkinson’s Disease. It is the second largest neurological condition in Ireland. The PAI have also pledged its support to the Neurological Alliance of Ireland Election campaign. You will find more details on our website [www.parkinsons.ie]

The election apart, we have an exciting year ahead and lots of dates for your diary.

Due to the success of last year’s patient conferences, we have received funding to deliver a National Educational Campaign to people affected by Parkinson’s and healthcare providers. The five educational conferences will be held in Limerick, Kildare, Mayo, Wexford and Donegal. You will find more details on page 15 of this magazine.

We have chosen some new locations across the country and have invited many interesting speakers to provide you with up -to- date information. I am pleased to see neighbouring branches working together and sharing resources to deliver the conferences and ensuring the success of this campaign. An example of this being the Munster Conference, delivered in partnership with Limerick/Tipperary Branch.

I am delighted to acknowledge the very generous donation made by the staff at Dublin Airport (DAA) as part of 2015 “Charity of the Year” nomination. We are also delighted to announce that we have secured the nomination for Intel ‘Charity of the year 2016‘. Nominations like this are very

important to us, they generate badly needed income, they improve the Association’s profile and they give us media opportunities to discuss the issues and challenges of living with PD.

Advocacy and raising awareness are among the PAI’s major priorities. This commitment will be evident again in 2016.

I urge you to plan now to join us for our fourth Annual Unity Walk on April 10th as part of Parkinson’s Awareness Week. Approximately 500 people from all over the country walked together in Dublin city centre to mark Parkinson’s Awareness Week 2015 and we aim (as a minimum) to repeat the tremendous success of last year. See page 3 for more details.

There are a number of other planned events including Harold Huberman Art Exhibition and Auction at Bank of Ireland, Collage Green. Thank you to Harold for his donation of 100 pictures and we wish him every success with his first exhibition. We have secured free of charge the services of a public relations company to do the public media relations during that week, to ensure maximum awareness.

I think it is always important to draw attention to the great work done locally in our branches. A number of case studies from branch members will be provided to the media and distributed to local and regional papers to ensure regional publicity and branch involvement in the Awareness Campaign.

The Mitsubishi Space Star raffle was launched in Supervalu Monaghan in December. Thank you to Martin Kruger for organising this fundraiser for the National Office. Tickets are on sale at e10 each. The draw will take place on May 28th in the Carmichael Centre.

The social weekend (normally held in September) will take place earlier this year on May 6-7th in the Hudson Bay Hotel. It has become a great weekend that offers a combination of education, entertainment and relaxation. I look forward to renewing friendships and meeting new members there.

We will also be delivering the findings from the Nationwide survey “Tracking Parkinson’s 2015” conducted in partnership with Dr Richard Walsh and Move 4 Parkinson’s. The response was far above expectations and is now the largest survey completed on this subject in Europe. We will also include the feedback from the research in the next magazine and at all conferences provided by the PAI throughout the country.

Warmest regards,

Paula Gilmore

A word from our CEo

CON

TEN

TS 2 A Word from our CEO

Paula Gilmore3 Parkinson’s Awareness Week4 Social Gathering5 Parkinson’s - Keep Active

By Barry McEntee

6 Dublin Brain Bank 8 Pathway to Modern Healthcare10 Branch News15 National Conference Dates16 Brain Gym - Teasers

17 Meds on Time18 Parkinson’s and SystMedPD

update on an article from our Autumn 2015 magazine

19 Donegal Information Afternoon20 Parkinson’s Grand Draw Details

Paula Gilmore

www.parkinsons.ie

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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: [email protected] Web: www.parkinsons.ieFreephone Helpline: 1800 359 359

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

Spring 2016 | 3

PArkInSon’S AWARENESS WEEK

Parkinson’s Awareness Week Calendar of Events:

10th OF APRIL – Parkinson’s Unity Walk

Walk with us to Celebrate World Parkinson’s Day 10th of April

The main aim of our Unity Walk is to celebrate World Parkinson’s Day and to raise awareness across Ireland about Parkinson’s disease. Our message is clear we want to improve the quality of the lives for the 12,000 people in Ireland living with Parkinson’s on a daily basis.

Please come and join us to celebrate this heart-warming, family fun day by participating in our Unity walk taking place from the Davenport Hotel and walk the route around Merrion Square, returning to the hotel for refreshments and entertainment afterwards.

Events such as our Unity Walk bring local communities together. Unified voices reinforce the message that the management of this chronic, progressive neurodegenerative disease has to change soon so that people with Parkinson’s get the right treatment for them at the right time.

We have invited several Neurological groups to join us on this walk.

We had a fantastic Parkinson’s Unity Walk in 2015

These walks have proved to be very empowering for Parkinson’s patients, families, friends, carers and professionals. On this note we urge you to

please come and walk with us and celebrate World Parkinson’s Awareness day.

Registration - 11.30am.Walk starts at - 12 noon. Followed by - Lunch /Entertainment.

We will keep you updated on our website www.parkinsons.ie and Facebook page,

Parkinsons Ireland, with more details as the event draws closer.

APRIL 11th -

Cork Unity Walk

The Cork Parkinson’s Unity Walk will take place at 11.00a.m on Monday11th April at the Ballincollig Regional Park (Inniscarra Bridge Carpark).

Members of the public who would like to join the Cork Parkinson’s Support Group at the Unity Walk are invited to just come along on the day and join in a unique event.

United We Walk

APRIL 13th -

Harold Huberman Art Exhibition

Harold Huberman Art Exhibition and Auction at Bank of Ireland, Collage Green taking place on the 13th of April. Thank you to Harold for his donation of 100 pictures and we wish him every success with his first exhibition. We have secured free of charge the services of a public relations company to do the public media relations during that week, to ensure maximum awareness.




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services. The picturesque views of Lough Ree and adjacent Athlone Golf Course can be enjoyed from the luxury bedrooms in both the Hodson Bay Hotel and the Hodson Retreat.

On Saturday 7th May, we will hold an Information Update in the morning with speakers covering a range of topics, Q&A and break for lunch.

Afternoon activities will include : Set Dancing/Yoga/Drumming

The Hotel are offering a special rate for people wishing to stay on Friday or Sunday.

Friday rate €59pps/€89 single Sunday rate €49 pps

In the heart of Ireland’s Lake district Hodson Bay Hotel & Spa is stunningly situated on the tranquil shores of Lough ree. The unique location of

this westmeath hotel allows you to enjoy the scenic Irish countryside and is only five minutes from Athlone town centre, located just 1 hour from dublin and Galway in “The True Heart of Ireland.”This 4 star Athlone hotel successfully mixes traditional charm with modern luxury and has much to offer by way of hotel facilities and

The Hodson Bay Hotel, Athlone will again be the setting for our social gathering this year.

Option ONE Option TWO €105pps/€130 Single €25pp

To Include: To Include:Information Update Information UpdateLunch LunchAfternoon Activities Afternoon Activities Gala Dinner & EntertainmentBed + Breakfast.

SoCIAL GATHERING

7th May 2016

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Spring 2016 | 5

of achievement from completing a long cycle with able bodied people which in my opinion helps to manage my depression. I cycle on my own throughout north Donegal every morning if the club members are not available.

I suppose I am fortunate to live in an area where there is an active Cycle club and super cycle routes with the most beautiful scenery. I have also a mountain bike which I use in the local forest park and a road bike for the road. A different set of skills is required for each type of cycling which helps to keep me challenged.

I sleep better at night and despite having disturbed sleep from my frequent visits to the bathroom I fall asleep quickly again due to physical exhaustion.

I have been assessed by a physiotherapist with regard to my walking but he notes that despite the fact that my right side is inactive I have to date little muscle wasting. This must be attributed to the fact that cycling motion means that I am using my right side daily.

Cycling encourages me to eat a healthy diet as that is necessary when one is cycling an average of 30 to 40 km seven days a week.

When cycling I rarely feel the symptoms of Parkinson’s of which I am so aware at other times. Strangely I rarely need to have an emergency toilet stop and my tremor stops when I am cycling.

I feel very lucky to have discovered cycling and hope that my health will allow me to continue to live a normal life for many more years. I plan to join the gym during the winter so that I can exercise when weather conditions do not permit cycling. I have booked a ski holiday as this was a passion of mine prior to my diagnosis. Were it not for the fact that I have maintained good physical fitness I would not have the confidence to consider something so challenging as skiing. I highly recommend keeping fit to anyone with a diagnosis of Parkinson’s disease.

I first noted a tremor in my right hand in 2010; I had a bout of depression in 2011 resulting in hospital admission. I have suffered with depression on and off over the years. I also noticed that I had rigidity in my right arm when I was walking. I attributed this to a fracture of my wrist a couple of years previously. In addition I had bladder problems and had the usual investigations for prostrate problems.

It was only when I collapsed at home with what appeared to be a cardiac event that I had a DAT scan done in Galway Hospital and was diagnosed with Parkinson’s disease. On reflection I believe that I had Parkinson’s for a number of years before being diagnosed.

I was 54 years old and the diagnosis came as a shock as I had imagined it was something that affected older people. Prior to the diagnosis I had taken up running and had been on a diet in an effort to manage my depression. I had lost almost 4 stone but my knees were painful and I had a number of falls probably due to the fact that I was trailing my right leg. I now walk with a limp which can be embarrassing.

My GP suggested cycling and so I started on that path. I joined the Errigal Cycling Club and have not looked back. The benefits of cycling both physically and mentally cannot be underestimated in my opinion.

I have social interaction with other members of the club who come from all walks of life which is fantastic. While they are aware of my diagnosis they all treat me normally and I manage despite my illness and advancing years to cycle up to 90 km with the club. I believe that the co-ordination required to cycle keeps my brain active, this is particularly evident when cycling with a group as one is required to synchronise with other cyclists. My reaction time is slower than the other cyclists so I need to either stay in front or behind the group as I feel unsafe in the middle of a big group. I do have difficulty in that I am unable to carry on a conversation with the other guys while cycling but they are aware and understand this.

I had a most enjoyable cycling holiday to Majorca with the Club last year. There is a wonderful sense

PArkInSon’S - KEEPING YOUR BODY FIT AND YOUR BRAIN ACTIvE

Barry McEntee

Article by Barry McEntee

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be made. This is particularly important where the disease has a hereditary or familial association, but in all cases can identify any discrepancies between clinical and pathological findings and afford doctors an opportunity to refine their diagnostic skills.

The chart above displays the range of pathologies identified in the currently banked brain samples. Pathologies causing “Parkinsonian” syndromes account for a significant proportion of the findings at approximately 15% but noteworthy also is the relative paucity of so-called “normal” tissue. We strongly encourage individuals without neurological issues to register as brain donors, as it is only through comparison with unaffected tissue that various physical or chemical abnormalities can be properly identified and studied by researchers.

To become a brain donor, it is necessary that an “intention to donate” form is completed and returned to us during the donor’s life. Upon death, consent must also be given by the immediate next-of-kin to proceed with the donation. It is important that these arrangements are made as far in advance as possible, so that the donor and other family members can discuss the issue together. The project coordinator will provide all of the required documents and answer any queries which prospective donors may have.

Where registration and consent are given, a post-mortem study limited to the nervous system will be carried out, ideally within 24 hours of death. The Brain Bank will bear all costs relating to transport for the purpose of donation and the donor’s remains are typically released to the undertakers

The Dublin Brain Bank at Beaumont Hospital has been in operation since October 2008 with the primary objective of supporting Irish clinical and neuroscience research into devastating neurological conditions such as Parkinson’s disease. This objective is achieved by facilitating the donation of brain tissue by the public through an ethically approved programme of informed consent, and the subsequent disbursement of this pathologically characterised tissue to approved research groups. The project has enjoyed a strong response from the public, accumulating over 250 donated brains and well in excess of 400 registered donors in total to date.

The donation of brain tissue enables clinicians and scientists to conduct studies which reveal otherwise inaccessible information about the nature of the neurological condition under examination. Within 72 hours of death, neuropathologists will recover the brain tissue and prepare it for post-mortem examination as in many cases a definitive diagnosis cannot be made based on clinical findings alone. For example, Parkinson’s disease can be identified clinically by the typical signs of tremor, bradykinesia or rigidity; but distinct pathologies such as multiple systems atrophy (MSA) or progressive supranuclear palsy (PSP) can also account for these symptoms. Donation of brain tissue will enable a definitive diagnosis to

dublin Brain Bank encourages the public to donate tissue for definitive diagnosis and medical research.

DUBLIN BRAIN BAnk

Donations to the Dublin Brain Bank are strictly confidential and all identifying details are held on a secure database“

by Robert O’Connell

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Spring 2016 | 7

We needed to investigate the procedure for this and I made the necessary phone calls- first to find out if we were “too old” to donate our organs to be told that even something as “insignificant” as the cornea of your eye could be of some value for donating. After contacting Brainwave we were sent forms to fill in with the necessary details and advised to acquaint our family members of our decision( it is no use putting it in your will as this would be too late for the procedure to take place)

When George entered Marymount Care Centre in February 2014 they were aware of his wishes and given a copy of his “wish form” and the staff advised accordingly. Sadly, George died very peacefully on the evening of 6th October 2015( 3 weeks before his 88th Birthday) and I was with him at the time.

Next morning the undertakers brought him to Beaumont Hospital to carry out his wishes and he was brought back the following day where he reposed in the Oratory in Marymount Care Centre. It was all very dignified and sympathetic.

I saw George before they took him to the Hospital looking very peaceful and serene and I was there on his return and I have to tell you he looked just the same- no change to his appearance and no sign of trauma or that anything had happened to him. I have to admit that I was expecting him to look a bit different but this was not so and I appeal to people do not worry and do not be afraid that your loved one will be scarred in any way. It is wonderful to think that George left behind him the greatest gift that anyone can leave when they depart this life- an opportunity to research and hopefully help others who suffer from Parkinson’s, Epilopsy,Motor Neuron, Multiple Scelerosis and Alzheimers along with many other brain disorders. There is such a need out there. It may not help you but in time it could make a difference to your children or your grandchildren who may be in need of help of an organ transplant in the future. Have you ever been troubled by the fact that there are so many men, women and children out there crying out for help and unless we donate, their situation is helpless.

“Give the gift of life by donating your organs”

on the same day, so as not to impact upon any funeral arrangements.

Donations to the Dublin Brain Bank are strictly confidential and all identifying details are held on a secure database. These details are then coded and will only be passed on to other healthcare professionals with the donor’s informed consent. The brain tissue itself is given a unique ID number and stored securely at Beaumont Hospital. Donating tissue to the Dublin Brain Bank represents a unique opportunity within Ireland for any member of the public to tangibly support medical research. Donations from all over Ireland are most welcome and contact with the project coordinator can be made using the following details:

Mr. Robert O’ Connell, Project Coordinator, Dublin Brain Bank

Dept. Neuropathology, Beaumont Hospital, Dublin 9.

Tel: (01) 809-2706; 24hr Messaging Service: (01) 7974757

e-mail: [email protected]; Website: www.brainbank.ie

My husband George

My husband George Strong was diagnosed with Parkinson’s in late 1998. For years he managed his life very well carrying on with life as usual, driving the car, continuing his hobby of wood turning, repairing anything that needed it, gardening and growing his organic fruit and vegetables- he had a good life enjoying it to the full. We were able to go for meals and he enjoyed his regular Tuesday morning at his local Probus Club for whom he opened his garden and hosted a “raspberry and coffee” morning on the 2nd Tuesday of each July. His Probus friends asked to be able to contribute something to his favourite charity-Guide Dogs for the Blind as George also suffered from Macular Degeneration. Both George and I carried an “Organ Donor” card and quite often we discussed our desire to donate our organs. He especially wished to donate his brain as his Mother also died with Parkinson’s .

by Patricia Strong

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regulating its co-ordinated movement. A reduction in dopamine due to loss of nerve cells in the brain subsequently affects your gait. Ultimately, gait can be a proxy for how bad or progressively worse PD becomes. A task you may have taken for granted can tell so much.

How is gait measured? Traditionally, micro gait characteristics needed for clinical examination have only been measured in bespoke facilities, such as the Central Remedial Clinic (CRC) in Dublin. As such, wide spread utility for the general public is extremely limited. Moreover, the cost to equip such a facility can run into the tens of thousands of Euro: the retrofitting of sensors embedded in the floor or the installation of Hollywood style 3-dimensional motion analysis cameras and a dedicated member of staff to

manage it all.

New technology

However, the last 20 years has seen the development of electronic sensors called accelerometers and gyroscopes to be manufactured on a miniaturised scale. The use of these sensors has allowed researchers measure gait in any environment, bringing

the potential of an expensive gait laboratory into your home. So how did we get there?

Sensors are packaged within devices (often called wearables) which are so small they can be attached directly to the skin, for more accurate results, usually for 7 days. As an example, each sensor can generate up to 3 electronic signals with 100 values generated per signal, per second. In one week that can accumulate to over 181 million values to analyse and understand. To do this gait algorithms (techniques incorporating statistics or processing methods) are created, developed and refined. This allows an engineer to package the data into a meaningful representation so the physiotherapist

for most who develop a vague tremor or a reduced ability to walk as well as they once could, this is seen as the natural course of ageing and thought of as only a shake, no need to worry.Unfortunately for some, these are the underlying symptoms of something more deeply rooted in neurodegenerative deterioration and the onset of Parkinson’s disease (PD). Many choose to ignore these signs until little can be done to alleviate their worsening tremor or reduced mobility. For those who are more pro-active about their health, appropriate pharmaceutical or surgical interventions are prescribed to help deal with any disease progression, improving their quality of life.

Reduced quality of walking (gait) are signs that all is not well and measuring gait characteristics is viable and tangible within modern healthcare research. It may be hard to believe but research has shown that the quality (and quantity) of ones gait can be a useful measure of risk of falls status, cognitive difficulties (memory and attention) and quality of life [1]. This makes measuring gait extremely important with it now coming to the forefront as a low cost diagnostic in PD research.

Gait and Parkinson’s

How does gait link to those conditions? Gait is a motor response that stems from dopamine

HOW you WALK: THE PATHWAY TO MODERN HEALTHCARE

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Spring 2016 | 9

methods and designing our techniques within the UK but the goal is to provide a resource, internationally available to the patient and health care providers. However, while this ambitious goal won’t be realised for a number of years (circa 2020) it promises to deliver better informed patient diagnosis and care beyond the UK. First steps in facilitating this improved low cost approach in Ireland is to link with colleagues in Trinity College as well as pursue international education technology grants such as those provided through Fulbright Ireland’s TechImpact award.

To ensure transparency and translational approaches to our research we will be aiming to link more heavily with those within Ireland to collaborate and disseminate our work (e.g. Parkinson’s Ireland social weekend 2016). This will ensure the same levels of novel assessment are available to those within Ireland, strengthening our analysis framework and our aim to provide better, more rounded PD care.

Alan Godfrey, PhDBrain and Movement GroupInstitute of NeuroscienceNewcastle UniversityEmail: [email protected] Twitter: @godfreybiomedWeb: http://research.ncl.ac.uk/bam/

References:

[1] Lord et al. Moving forward on gait measurement: toward a more refined approach. Movement Disorders, 28(11), 2013.

Alan Godfrey is a Research Associate with the BAM Group at the Institute of Neuroscience, Newcastle University. His current research interests include gait and ambulatory analysis using wearable devices with novel algorithm and signal processing techniques. He is an adjunct lecturer in Electronic Engineering at the National University of Ireland, Galway and an Associate Fellow of the Faculty of Medical Science, Newcastle University. He is a member of the IEEE Engineering in Medicine and Biology Society (EMBS) and a member of the Institute of Engineering and Technology (MIET). He holds a BEng in Electronic Engineering and a PhD in Biomedical Electronics.

or doctor can make more informed decisions to treat those with PD (or any other movement disorder). These algorithms have evolved over many years and the passage of time has also seen the associated cost for the manufacturing of devices tumble. It is now possible to buy a device and implement a gait algorithm for about €145. Yet, while this is still only plausible within a research domain, it bodes well for gait to be used a low cost diagnostics in everyday life.

Lay of the land

Where does all this work happen and what next? The Brain and Movement (BAM) Group created by Prof Lynn Rochester at Newcastle University are leading the way in gait analysis within PD research. BAM is a collection of physiotherapists, doctors, biomechanists and (most importantly of course) engineers! My work within the group spans a number of research projects all relating to the use of the wearables. However, the most important of those projects is the gait related ‘Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation’ or ICICLE-Gait study for short. Within that project we have routinely assessed 100 people with PD (from diagnosis, 2008/09) and 100 controls with wearables within our gait laboratory during a range of different tasks, as well as assessing their gait in their normal home and community environments. We have validated a low cost wearable and developed a processing framework that will allow us to gather large gait data on a national scale with clinically relevant gait characteristics. This work was presented by Prof Rochester and me at the International Conference on Ambulatory Monitoring of Physical Activity and Movement, held at the University of Limerick in June 2015. We showed how: gait (and other tasks) can be accurately collected with a single wearable, gait characteristics can describe different diseases and gait data collected in the home/community may be more useful than gait measured in the laboratory to assessing PD.

2020 vision

It’s exciting to be part of such a leading UK and innovative research Group. But what does this mean for PD developments within Ireland? Currently, we are developing a body of work seeking to utilise gait and low cost wearables as a future diagnostic to ensure more rounded PD care (as well as other patient groups) and improved patient empowerment. We are developing Article by Alan Godfrey, PhD

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DUBLIN BRANCH

We had a very successful Christmas Lunch at the Marine Hotel, Sutton on Saturday 5th December 2015. After a lovely meal, Dublin Branch member Brendan Bracken and his friends provided lively musical entertainment. We had a fun raffle and some members took to the floor to entertain us with songs and stories.

We had a busy few months fundraising with three successful events between October and December.

The Saturday Signets Society at Leopardstown Golf Club chose Dublin Branch as the charity for their fundraising day in October. Two members of our committee went along on the day and they had put on a wonderful golf event for their members. They raised €2,155 and we are very grateful to them for choosing us as their charity for 2015.

Saturday Signets Committee Members with Dublin Branch Membership Secretary Sinead O’Kane

The committee held a successful church gate collection in October at St Patrick’s Church in Monkstown, where €630 was raised. We are very grateful to them for their generosity.

The Leeson Park Players gave us a donation of some of the ticket sales for their play ‘The Flint Street Nativity’ in December and we thank them for their kindness.

The next Members’ Meeting will be the AGM in late February or early March. As well as official business, we will have a speaker and the Committee hopes there will be a good attendance. Details are published in the Dublin Branch Spring Bulletin issued in February.

Exercise classes:

Northside - Community Centre, St Anthony’s, ClontarfMondays 2.30pm to 3.30pmContact - Phyllis 01-8333569

Southside - Sisters of Charity, DonnybrookThursdays 2pm to 3pmContact - Christine 01-4906704

Set Dancing

Set dancing will re-start in March

Dates and details are published in the Dublin Branch Spring Bulletin

The South Dublin Support GroupContact – Aoife or Kevin 01-2893642

Portmarnock/Malahide Support GroupContact – Tony Brady 087-7953302

The Committee would like to wish all members a very peaceful and successful New Year.

Contact Judy Williams 085-1459064

Email - [email protected]

NORTH WEST BRANCH

The members would like to thank Head Office for the Information Day that was held in Letterkenny in November. The conference was well attended. All in all it was most enjoyable and a very informative day. The feedback was very positive also. Well done to all involved.

Fundraising and donations are what helps us carry out our work supporting our patients and we are very grateful to the following for their contributions:

Annie T Walker who donated €380.00Ballyliffen Golf Club -€570.00Drumcliff ICA- €1665.

Our AGM was held 7th February in the Mount Errigal Letterkenny at 1pm .

It was with regret and sadness we learned of the death of our friend Paddy McDonagh, 48 Sea view Park, Cliffoney, Co. Sligo.

Paddy passed away on the 24th of January. We offer our sincere sympathy to his wife Anne and his family.

Contact Christina Derrig 071-9169128

BrAnCH NEWS

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SOUTH TIPPERARy SUPPORT GROUP

December dawned for South Tipperary Support Group with a culinary delight in the form of Christmas lunch in Hotel Minella, Clonmel, on Tuesday December 5th, which was enjoyed by all present. We were fortunate to have as our guest, the latest member of Parkinson’s Ireland Board of Directors, Michael Burke and his hard working wife Marion. Also present was a lady who recently had Deep Brain Stimulation. She is coping very well.

Fundraising Despite the wind and rain of December, we held a very successful Ceili in Clonmel on St. Stephen’s night. Thanks to all helped make it a success. To keep our brains stimulated raise some money, we held a Table Quiz on Friday January 29th in The Glenview Lounge, Goatenbridge, Clonmel, commencing at 9 pm. Further funder raisers are planned for later in the year.

Activities We are hoping to keep ourselves limber and light stepped, by practicing Yoga, Set-Dancing.

Watch out River dance For the Michael Angelo among us, we are taking up Art in March.

The formation of committees and the responsibilities of their officers is another project we are hoping to pursue. So as you can see we are a lively adventures group. We are optimistic about the future, and by pursuing varies interests, we try not to dwell on our condition. ‘One day at a time’ as the song says.

Monthly meetings, held on the first Tuesday, 10.30-12.30 in Hotel MInella, Clonmel.

Contact Mary Finnegan 086 1224283 email [email protected]

TIPPERARy BRANCH

On Friday 6th November we had a very successful meeting in the Pastoral Centre, Church Rd, Nenagh with Guest Speaker Dr. Helena Moore, attached to General Hospital, Tralee. We had a large crowd and a very good question & answer session where people got more information on their illness.

“The Launch of Stories & Rhymes from Forgotten Times” in Roscrea heralded a hectic period of activity for the Tipperary Branch in the lead up to Christmas. Many tributes were paid to the Author Paul Ryan for his determination and

courage despite having a very debilitating form of Parkinson’s. This is Paul’s second book and cost €10. The support of his family, friends and staff of the Nursing home in bringing his dream to fruition is a tribute to his popularity.

Clonmel Support Group held a festive Christmas Party & Dinner in the Manilla Hotel, Clonmel celebrating a hectic successful first eighteen months since their foundation, concluding with a ceili on St. Stephen’s night. They held a table quiz on Friday night 29th January.

Thurles support group celebrated Christmas with Carols & Sing along with the Girls of Upperchurch Youth Choir in the Community Hospital of the Assumption, Thurles.

Our branch was chosen as one of three local charities to benefit from the 24th Annual Youghalarra, Christmas Morning Swim. Friends, Family and members were enlisted in selling sponsorship cards during the end of November & December. We had nine representatives swimming for Tipperary Branch on Christmas morning in the flooded river Shannon at Youghalarra Quay, Newtown, Nenagh. 7 Girls and one man The Barry Sisters, from Newtown, Mr. Slattery from Ballywilliam, Ellen Donnelly, Moneygall Aoife Katie & Carey sisters Catriona & Shauna from Upperchurch all participated. Our thanks and appreciation to this group for giving of their time on Christmas morning also to their family and our members who attended to support and offer encouragement Despite the high water levels in the River Shannon & Lough Derg 130 swimmers took the plunge into the cold water. We must compliment the local volunteers who had excellent safety procedures in place. Our thanks to the younger generation who swam on our behalf. They


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all enjoyed the choice of after swim refreshments, Hot Punch, Soup, Tea, Fry Up, sandwiches etc., despite the very wet morning a huge crowd of supporters turned out for all the group.

Our appreciation to all who organised the swim and gave up of their Christmas morning for the benefit of local charities.

We missed Santa due to the swim but he made up for it when the three charities were presented with their cheques at Jim Barry’s Bar Newtown, Menagh at presentation and social night. Each Charity received €7,015. Many thanks to Jim & Geraldine for food provided on the night.

On St. Stephen’s day Tipperary Branch P.R.O. Marion Burke represented the branch at a soccer blitz tournament in Ballymackey F.C. organised by the Hogan family in memory of their mother Margaret who died with Parkinson’s. Their uncle is also a Parkinson’s patient. Many thanks to Ger, Donall and all the family for the sponsorship it is greatly appreciated.

Tuesday 5th January saw the resumption of meetings in Clonmel. Friday 15th January Thurles Support Group had Brid Harty, teacher of “Heal your life workshop” (based on the philosophy of Lousie Hay) as Guest Speaker. Monday 18th January Nenagh Support Group met with Yoga instructor Siobhain O’Leary who demonstrated Chair Yoga for Parkinson’s patients classes being arranged for near future. Second Guest Speaker on the day was Marion Slattery, Occupational Therapist who has just returned to Ireland from four years in Australia and working with Parkinson’s patients there. Marion brings new enthusiasm approach with her experience in activities patients with neurology disease including Parkinson’s. Marion is a LSvT Instructor and also does Tai Chi for Health and falls prevention. Classes commencing in early February.

Nenagh Social evening is planned for February/March more details later.

Contact Marion Burke 067-31870

SOUTH KERRy BRANCH

The branch enjoyed a Christmas evening meal in the Royal Hotel Killarney with guests Kathleen O’Sullivan and Dr. Sean Ritchie. Kathleen has done a lot of work for our branch and we would like to thank her for her kindness to us all. In January Grace McCrae along with Teddy & Kathleen Cronin and Connie gave a talk to the nurses in the North Campus College in Tralee. We have been busy with our group each month where we have yoga classes and have found them to be very helpful with our members.

We are hoping to have Nicola, Parkinson’s Nurse Specialist down to our group again to give a talk soon. We would like to offer our sympathy to Mike Moynahan’s brother and also to Kathleen O’Keefee’s brother. May they both rest in peace.

Contact Grace McCrea 064-7758837

WExfORD BRANCH

We at the Wexford Branch have had a great year with an with an excellent increase in Membership

Our Yoga classes are going from strength to strength and continue to be held on Fridays @ 11am in Coolcotts Community Centre, Wexford (Everyone Welcome)

Our Christmas Party was held in The Whitford House Hotel, Wexford which was a great success with an absolute great turnout, with lots of spot prizes won on the day

WE ARE NOW ON FACEBOOK where you can keep up to date with our latest news & events that we will be arranging throughout the year watch out for one of coffee mornings where you can come for coffee & a chat we would love to meet you!

Contact InformationCall: Mike Murray 087-2690999Email: [email protected]: Parkinsons Wexford

MID WEST BRANCH

We had a lovely Mass on 1st. December to remember our deceased members. The Mass was celebrated by Most Rev. Dr. Donal Murray, Bishop Emeritus of Limerick, ably assisted by Eddie Butler. It was a special day, and enjoyed by the 59 people

Louise Hay

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in attendance. Again it is great to see so many people attending these monthly events, it brings the members and carers together, keeping them in touch with each other, which is so important.

We had our Annual Christmas Lunch in January and it was very successful. We were royally entertained with dancing excellence by our dancing teacher, Pat O’ Dea.

We are back in action after Christmas with Swimming, Dancing, Singing Classes and our usual Monthly Meetings. We will also have Committee Meetings, and we would encourage all committee members to attend.

We will be having a Bridge Morning in February, and will be organising our Annual Golf Outing later on in the year.

Could we remind members that the Annual Membership Fee (minimum e25) is now due, and should be sent to The Hon. Treasurer.

Contact Billy Rice 061-228003

GALWAy BRANCH

We had our Christmas party in January and it was great to see so many people there. Thanks to the Clayton Hotel for making it a special day. Our physio and speech classes have started in

the Clayton Hotel, Barna, Ard Ri Tuam and Raheen Woods. If you want to take part contact Marie. We held our annual valentine coffee morning in the Clayton on the 11th February 2016 All funds go towards our classes.

Contact Marie Cahill 087-7783825

CAvAN BRANCH

Well the Cavan branch have been quite busy since the last newsletter. It started with Afternoon Tea at the Crover House Hotel in November followed by a talk on the benefits of Physio and Speech & Language for people living with Parkinson’s, by Michelle Hall, Senior Physiotherapist, HSE, Cavan Monaghan and Anne Mc Mahon Senior Speech & Language Therapist, HSE, Cavan Monaghan. The talk was very interesting and helpful, particularly the information on how to access the services.

On a sadder note we wish to extend our sympathies to the family of the late Frank Flanagan R.I.P. who passed away on 6th January, 2016. Frank and his wife Eithne had attended the outing to Crover House and enjoyed the day and were looking forward to the Christmas party but Frank took ill a few days before.

Then it was on to our Christmas party which was held this year in the Riverfront Hotel in virginia. The room was beautifully decorated and they served up a great Christmas dinner. Thank you also to Aine’s Chocolates, Strandone for sponsoring the chocolates after the dinner! The meal was followed by a raffle and music and singing was provided by the dynamic duo Mel Doherty and Dessie Ronan which was enjoyed by all who attended. They also sang Mitch Faile’s song “Blame it on the Parkinson’s” and everyone joined in! Also a special welcome to our three newest members Reg, victor and Danny!

Just because it was Christmas, it didn’t mean that we could sit back and do nothing! On 28th December the Bailieborough Walking Group organised a charity walk in aid of the Cavan Parkinson’s branch. Four of our members attended to represent the Branch. Local member, Sheila Clarke and Sandy and Andy Howard and secretary, Eileen Burke Smyth. Andy and Eileen took part in the walk. Despite the weather, being cold and damp the rain stayed away and there was a great atmosphere followed by tea and mince pies.

We recently had a get together in the Hotel Kilmore to which we invited the local paper, the Anglo Celt who is going to do an article on Parkinson’s Disease and highlight issues and where to get information. In the middle of it all much to our surprise our Chairman Paddy Conaty arrived into the meeting room with the reigning Rose of Tralee and the current Rose of Cavan and the 2014


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Rose of Cavan. It was a lovely to meet the Roses and to get our photo taken with them. After the get together, most of us traveled the short distance to the Con Smith Memorial Park for the planting of an Aspen Tree by the Chairman of Cavan County Council, Paddy Smith to commemorate past and present members of the Cavan Parkinson’s branch. A special word of thanks to Councillor Paddy Smith for presiding over the planting of the tree, to Cavan County Council for permission to plant the tree and their assistance in preparing the plot for the tree, to Abbeylara Garden Centre for sponsoring the tree and to Mel’s Signs for sponsoring the plaque.

The next event is our A.G.M. on Monday 15th February, 2016 at 7.00pm in the Kilmore Hotel, Cavan. There will also be a talk on the night by the Crime Prevention Officer from An Garda Siochana on safety in the home. The committee is also planning other events for the year including a party to celebrate the Tenth anniversary of the Cavan branch. Well that’s all for now!

Contact Paddy Conaty 087-2798811

CORK BRANCH

Our final information meeting of 2015 was attended by Joseph Kiely an experienced local solicitor who dealt with two important subjects

which are of particular relevance to People With Parkinsons (PwPs) and for the benefit of readers I will briefly explain them now. The first of these was

the Will drafting process which he summarised as follows: Name Your Executor eg a trusted friend or relative; Identify your assets; Identify your solicitor; Consider who you want to provide for; Arrange for two witnesses; Keep Your Will Safe and Review it regularly.

The second subject covered was The Enduring Power Of Attorney which is essential for any body who is at risk of developing Alzheimer’s or Dementia. Unfortunately at least 20% of PwPs will develop Dementia and it is prudent to take steps to ensure that you are cared for in the manner you wish to, and that your affairs are managed appropriately if you do actually develop Dementia. An Enduring Power Of Attorney remains in force indefinitely and allows the person nominated by you to manage your affairs exactly the way you specify when drawing up the Power Of Attorney. In the absence of an Enduring Power Of Attorney, it may be necessary for your carers to apply to the Courts to obtain Ward Of Court Status, a process which can be both expensive and cumbersome. Solicitors fees for drawing up an Enduring Power Of Attorney could cost from €400 upwards and it is important to agree a fee with your Solicitor in advance.

Our Christmas Coffee Morning was most enjoyable with a record attendance present. Aideen Sullivan, a youthful and most pleasant Professor Of Neuroscience at UCC , attended to explain a Diet, Movement and Sleep study which she hopes to conduct in 2016. Cork Branch made a very significant donation towards the cost of this research and we are very excited about it.

Our January coffee morning took place on a very wet Monday morning, but nevertheless a very high attendance made the journey to Oriel House Hotel in Ballincollig. We were joined by Ceara and Andrew from Beats Medical who demonstrated their Mobile Phone APP for PwPs and stayed over for the Set Dancing class the following day where they participated in a few Sets as well as observing the footwork of the PwPs present. A number of members are trialling the APP at the moment and we would be interested in hearing from members in other branches who may be using it.

Our Annual Party took place on 24th January and more than 150 people attended. Approximately 25 PwPs attended for the first time and they shared in the beautiful meal and musical entertainment. We had a wonderful variety of music including, the Cork Choristers, Michael Looney and friends and

Con Smith Memorial Park

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members of the Historical and Social Club Cork. As his party piece, the Branch chairman sang the Todd Snider version of “Enjoy Yourself” which surely is something everyone should attempt to do with their lives, With or Without Parkinson’s.

Contact Ted Horgan 0872375558

WATERfORD BRANCH

Members of the Waterford branch meet every Monday 1pm to 4pm in the Cheshire Homes.

Dates for your diary

May . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Limerick

June . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Donegal

September . . . . . . . . . . . . . . . . . . . . . . . . Mayo

October . . . . . . . . . . . . . . . . . . . . . . . . . . . Kildare

October . . . . . . . . . . . . . . . . . . . . . . . . . . . Wexford

Please visit our website www.parkinsons.ie for more information on these conferences.

We will be choosing new locations and encouraging branches to work together and share contacts and expertise. Full programmes will be available in the coming weeks. Our aim is to ensure that you have access to Neurologists, Nurse Specialists and up to date research through this National Campaign.

The Parkinson’s Association of Ireland in Partnership with Abbvie Pharmaceutical Company and local branches will provide information and bring health care professionals to you.

due to the tremendous success of 2015 conferences held around the country we are delighted to announce that we will be increasing the number of conferences to five in 2016 spread throughout the country.

NATIONAL ConfErEnCE 2016

DAA CHARITy Of THE yEAR 2015

The Parkinson’s Association of Ireland were overwhelmed to receive this honour as it was the very first time in the history of the association that we were chosen as a charity of the year and given the opportunity to highlight awareness of the condition and to be so generously funded by the DAA.

Our front cover shows Pat O’Rourke Chairperson of PAI, Paula Gilmore CEO, John Bannon DAA, Sabrina Fagan PAI

Special thanks to John Bannon and Mary Pierce for their commitment to PAI throughout the year. Intel- The Parkinson’s Association of Ireland have been chosen as Intel Ireland Charity of the year 2016.

INTEL SUPPORTS PARKINSON’S

Parkinson’s Association of Ireland along with Dogs for Disabled at the launch of Intel charity of the year 2016LOOKING 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


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K e e p Y o u r M i n d e n g a g e dST. PATRICK'S DAY

Find and circle all of the words that are hidden in the grid.

The remaining 34 letters spell a secret message.

Fireside QuizCan you identify these well know logos?

BEERBELFASTBISHOPCABBAGECELEBRATIONCELTIC CROSSCHRISTIANCLOVERCORKCORNED BEEFDANCINGDUBLINEVENTSFEAST DAYFESTIVALGREENGUINNESSHERITAGEHISTORY

HOLIDAYHOLY DAYIRELANDIRISHLEPRECHAUNLIMERICKMARCHMISSIONARYMUSICPARADEPATRON SAINTPOTATOESSEVENTEENTHSHAMROCKSNAKESSODA BREADTRADITIONYEARLY


www.pa rk i n son s . i e

Secret Message :

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Spring 2016 | 17

can increase your “on” time. “On “ time is when symptoms are minimal. “Off” periods are when symptoms are more noticeable. Medication treatment helps to reduce “off” periods. If you forget to take a pill, effective relief of your symptoms may be effected and your symptoms may be unpredictable or can fluctuate.

Timing devices can be crucial in helping to avoid missed doses. Pill dispensers, blister packs and can help organise pills by day and time.

Q. My brother was recently in hospital following a fall. His medication was missed on numerous occasions during his stay there.

A. When a person with Parkinson’s is in hospital it is vital to inform nursing and medical staff of the importance of receiving Parkinson’s medication on time.

Parkinson’s disease can be a complex condition. Each person with Parkinson’s disease will have an individualised tailored regime depending upon his/her age, physical state, level of disease etc, thus no two patients drug regimes will be the same. While keeping track of medications can be a challenging task, understanding your medications and sticking to a schedule will provide the greatest benefit from the drugs and avoid unpleasant “off” periods due to missed doses The more predictable and reliable you are about taking your meds the more predictable and reliable your Parkinson’s will be.

If people with Parkinson’s don’t get their medication on time, their ability to manage their symptoms may be lost.

Some frequently asked questions around meds on time:

Q. I am on Sinemet 4 times a day. What is the best time to take my medication ?

A. For optimum benefit from your medication your first sinemet should be taken in bed when you wake, followed four hourly throughout the day.

Example- Take your first tablet at 8am. Next tablet at 12noon, then 4pm and last tablet at 8pm. Medication should be taken when you are active throughout the day. Drink a full glass of water for each dose. If you find it difficult to drink water it can be diluted with a juice. Plan your medication around a high protein meal and take meds 45mins prior to eating or 1 hour after your meal. Constipation can be a symptom of PD and is the number one reason why a person’s Parkinson’s can become worse so a high fibre diet is recommended and aim for bowels to move daily to get the maximum benefit from your meds.

Q.. I have often forgotten to take my afternoon dose of sinemet. What should I do to avoid this?

A. Taking meds correctly as prescribed can make a significant difference in managing the symptoms of your Parkinson’s. This

mEdS ON TIME

RITCHIE KAvANAGH IS RE-RELEASING THE SONG “AON fOCAL EILE”

All proceeds from the single will go directly to the Parkinson’s Association of Ireland.

Well done and thank you to all involved.

Ritchie will join us at our Unity Walk on 10th April in the Davenport Hotel.

Please come and join in the fun.

Ritchie Kavanagh with Shay Healyand Paul McGrath at the launch

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www.parkinsons.ie

detection and therapy development by developing tools and approaches, and to commercialize the project results so the society as a whole can benefit from the results. Although there are several existing investments in the systems biomedicine in the EU, many of those investments have not yet been leveraged due to the high costs of assays. However, screenings of large compound libraries derived from nature and synthetic chemistry, are crucial on the path to identifying novel drugs.

This is where SysMedPD comes in: ‘Current therapies of Parkinson’s disease are

only symptomatic. We are very excited about the SysMedPD

consortium because its goal is to develop new drugs based on the mechanisms of PD. This requires interdisciplinary cooperation from clinicians to engineers to computational biologists’, explains Rudi

Balling, Coordinator of SysMedPD and Director of the

Luxembourg Centre for Systems Biomedicine.

As PD patients are five times more likely to require nursing home care and this

care costs about five times more than the average nursing home care, successful development of drugs slowing PD-progression would not only lead to an increase in the quality of life of patients, but will also lead to health care cost savings. There will be a subsequent economic impact for companies developing drugs for PD, as the miniaturization of cell culture and metabolomics assay developed within SysMedPD will reduce the associated costs.

The SysMedPD partners can build on the scientific expertise of an outstanding consortium of complementary academic groups as well as biopharmaceutical companies with longstanding expertise in the field of mitochondrial medicine and drug testing. The SysMedPD consortium came together on January 7th and 8th in Luxembourg to officially kick off the project’s activities. The project website has gone live at http://www.sysmedpd.eu/.

Press Release

New EU research project SysMedPD joins forces between universities’ research facilities and biopharmaceutical companies

New EU research initiative aims to develop drugs to slow down the progression of Parkinson’s disease

Maynooth University, 11 January 2016 – Parkinson’s disease (PD) is a progressive neurological disorder that is increasingly prevalent with age. After Alzheimer’s disease, PD is the second most common neurodegenerative disease and its prevalence will continue to grow as the population ages. More than one million people with PD live in Europe today and this number is forecast to double by 2030. Currently, the associated European cost estimated at €13.9 billion annually.

With the start of SysMedPD on 1st December 2015, a new EU research project sets out to further explore and identify novel drug candidates capable of slowing down the progression of neurodegeneration in the subset of PD patients with overt mitochondrial dysfunction. The research during SysMedPD will specifically focus on monogenic forms of PD that involve mitochondrial abnormalities as a primary or secondary phenomenon, which is estimated to account for 10% to 20% of the total number of PD patients corresponding to 1-2 million people.

Equipped with a budget of €5.9 million, the SysMedPD consortium’s objectives are to leverage

national but especially European investments in the systems biomedicine sector, to improve means for PD

In the Autumn 2015 edition of our magazine we included an article on research, below is the press release for the research and how to follow the project.

PARKINSON’S IrELAnd AND SYSMEDPD

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Spring 2016 | 19

The partners in SysMedPD at a glance:

Germanyq University of Lübeck (Prof. Christine Klein)q EURICE – European Research and Project

Office GmbH (Corinna Hahn)

Irelandq Maynooth University (Dr Niall Finnerty)

Email: [email protected]

Luxembourgq University of Luxembourg (Prof. Rudi Balling,

Dr Ronan Fleming, Prof. Jens Schwamborn)

Netherlandsq Khondrion Bv (Prof. Jan Smeitink)q Mimetas Bv (Dr Paul vulto)q University of Leiden (Prof. Thomas Hankemeier)

United Kingdomq University College London

(Prof. Anthony Schapira)

Coordinatorq Prof. Rudi Ballingq University of Luxembourg

To follow the project at http://www.sysmedpd.eu/ Email: [email protected]

your CommEnTSLet us have your comments and we’ll

post them here, in the next issue

An information update was held in the Clanree Hotel, Letterkenny on Sunday 1st november 2015.

The speakers on the day were Paula Gilmore, Ceo, Parkinson’s Association of Ireland, Paddy Browne, Parkinson’s Nurse Specialist, Galway University Hospital and Dr. Evan McGovern Specialist registrar, Neurology, St vincent’s Hospital Dublin.

The event was very well attended with a lively Q&A session. A survey was distributed on the day to gauge interest in setting up support groups in the surrounding areas as we understand that many Parkinson’s patients are scattered throughout the county and find it difficult to attend meetings where long travel times are involved. A Christmas Party was held on 13th December in Clanree Hotel but the turnout was quite small.

As a result of this the Northwest/Donegal branch are working towards setting up support groups. Please contact Christina Derrig on 071-9169128

donEGAL INFORMATION AFTERNOON

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




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