Parkinson’s Association of Ireland Education Special Feature

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