Parkinson`s of Ireland

Parkinson’s
Parkinson’s Association
of
Ireland of Ireland
Association
www.parkinsons.ie
AUTUMN 2015
3rd Munster
Parkinson’s
w w w. p a r k i n s o n s . i e
Patient Conference
In
IN this
This Issue
l
l
l
l
l
World Parkinson’s Congress
Did Somebody Call a Cab?
Social Gathering Agenda
A Life of Adventure with
Parkinson’s
Upcoming Information Days
l
3rd Munster Parkinson’s
Patient Conference
l Launch of Monaghan Branch
l Branch News
l Understanding Parkinson’s
Jacques and Susan Deneault
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Paula Gilmore
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 nonmembers. 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.
CONTENTS
Congratulations to Ted Hogan and the entire Cork
branch for a very successful information day. The day
2 A Word from our CEO
Paula Gilmore
3 World Parkinson’s Congress
4 Did Somebody Call a Cab?
Goaccessible.com
5 Social Gathering Agenda
Saturday September 19th
A word from our CEO
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
6 A Life of Adventure with
Parkinson’s
Jacques Deneault
7 Event Guide
8 Upcoming Information Days
A series of Conferences
10 3rd Munster Parkinson’s Patient
Conference
12 Launch of Monaghan Branch
Martin Kruger
13 Branch News
18 Understanding Parkinson’s
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World Parkinson’s Congress
2016
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.
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 newfound 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.
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.
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?
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
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.
Parkinson’s Association of Ireland, Carmichael House, North Brunswick Street,
Dublin 7 Tel: 01 872 2234 Email: [email protected] Web: www.parkinsons.ie
Freephone Helpline: 1800 359 359
Company registered in Ireland No. 123532, CHY No. 10816
Registered address as above
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.
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Autumn 2015 | 3
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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?
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“Facing the Challenge
of Parkinson’s Together”
Hodson Bay Hotel, Athlone
Saturday September 19th 2015
Social Gathering Agenda
AGENDA
10.0am - 10.30am
Arrival/Registration
MORNING SESSION
Chaired by Nicola Kavanagh Parkinson’s Nurse Specialist
10.40am
Welcome Address. Paula Gilmore, CEO, Parkinson’s Association of Ireland
10.45am - 12noon Dr Richard Walsh, Consultant Neurologist, Tallaght Hospital
Managing Medications. Your questions Answered
12noon - 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 3.00pm - 4.00pm 4.00pm - 4.45pm 7.30pm
Set Dancing/Drumming Workshop
Drumming/Set Dancing Workshop
Yoga through the chair
Banquet Dinner/Live Entertainment/Fun & Games
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
Option ONE Option TWO
€99pps
€25 pp
To Include:
Information Update Lunch Afternoon Activities Gala Dinner &
Entertainment
Bed + Breakfast.
To Include:
Information Update
Lunch
Afternoon Activities
Single room supplement for Sat night is €119.00
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Autumn 2015 | 5
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A Life of Adventure with
by Jacques Deneault
I 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.
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.
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
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.
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parkinson’s
Are 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.
Event Guide
Dublin 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 [email protected]
for a sponsorship pack free of charge.
VHI Mini Marathon 2015.
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.
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 Afternoon
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!!!
An 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.
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
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upcoming information
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.
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
Agenda
• 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
• 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
Parkinson’s
Parkinson’s Association
of Ireland
Association of Ireland
w w w. p a r k i n s o n s . i e
IREDUO150375 Date of preparation: July 2015
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days
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.
Parkinson’s
Parkinson’s Association
of Ireland
Association of Ireland
w w w. p a r k i n s o n s . i e
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3rd Munster Parkinson’s
Patient Conference
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.
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.
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
Nicola Kavanagh, Parkinson’s Disease Nurse Specialist
emphasised the importance of managing medication
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Professor Emerita of the University of South
California, Kathleen Reardon discussing how we
should talk about PD
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.
Parkinson’s Association of Ireland CEO
Paula Gilmore in conversation with Kathleen Lynch TD,
Minister of State, Department of Health
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.
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
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launch of the
Monaghan branch
My 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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BRANCH NEWS
Donegal Branch
The 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 Branch
We 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 Branch
Well 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 Branch
Cork 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
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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 BRANCH
Our 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 Workshop
We 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 3.30pm
Contact - Phyllis 01-8333569
Restarting on Monday 14th September 2015.
Southside - Sisters of Charity, Donnybrook
Thursdays 2pm to 3pm
Contact - Christine 01-4906704
Restarting on Thursday 3rd September 2015.
Set Dancing
The Set Dancing will re-start in September. Dates
and details will be published in the Dublin Branch
Autumn Bulletin.
The South Dublin Support Group
Contact – Aoife or Kevin 01 2893642
Portmarnock/Malahide Support Group
Contact – Tony Brady 087 7953302
Contact 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 Branch
Cavan Parkinson’s branch recently held its AGM
and the following people were duly elected onto
the committee.
Chairman – Paddy Conaty
Secretary – Eileen Burke Smyth
Treasurer – Seamus Minogue
PRO – 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.
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 branch
On 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 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.
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.
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
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.
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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 Group
To 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.
Survey 2015
In 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.
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 Branch
East 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
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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
MID WEST Branch
On 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 [email protected] or
Eddie Butler at [email protected] or
P. J. O’ Driscoll at [email protected]
Aidan O’ Connor at [email protected]
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.
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
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Understanding Parkinso
According 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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on’s disease
nitrogen 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.
In Europe alone, the direct and
indirect costs associated with
the disease are in the region of
e14 billion per annum.
,,
,,
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: [email protected]
Text the word PA R K I N S O N S
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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Autumn 2015 | 19
Parkinson’s Association of
Ireland launch Branch Specific
range of pull up banners
Christmas
christmas Ideas
ideas from the PARKINSON’S
parkinson’s ASSOCIATION
association OF
of IRELAND
ireland
CHRISTMAS 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&P
Parkinson’s
Parkinson’s Association
of Ireland
Association of Ireland
w w w. p a r k i n s o n s . i e