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The Survivor Newsletter: Spring 2010

Inside this issue:

And much more...

Your Representatives Nationwide

HEAD OFFICE STAFF:

Tel: 01 8898920
Fax: 018898924
Website: www.ppsg.ie

CHIEF EXECUTIVE:

Eamonn Farrell
Email: ceo@ppsg.ie

SERVICES TO POLIO SURVIVORS
Lillian McElvaney
Email: sic@ppsg.ie

CLERICAL OFFICER
Ursula Treacy
Email: info@ppsg.ie

REGIONAL SUPPORT WORKER
Anne Shanahan
Email: anne.shanahan@ppsg.ie

BOARD MEMBERS
Hugh Hamilton: (Chairman)
Tel/Fax: 01 289 4800
Mobile: 087 255 3012
Email: hamsalem@eircom.net

John McFarlane (Deputy Chair & Editor)
Tel: 057 9353552 Mobile: 087 202 9830
Email: newsletter@ppsg.ie or jmcfarlane1@iolfree.ie

Paula Lahiff (Company Secretary)
Tel/Fax: 071 916 4791 Mobile: 086 322 4402
Email: paulalahiff@gmail.com

Clara Dunne (Treasurer)
Tel: 01 672 1601 (W) Fax: 01 672 1650
Tel: 01 8335524 (H) Mobile: 087 227 6202
Email: clara.dunne@caceis.com

Joan Bradley (Board Member)
Tel/ Fax: 01 454 9237 Mobile: 086 364 0170
Email: amjbradley@eircom.net

Anne Burns (Board Member)
Tel: 01 453 4150
Email: boyneabu@eircom.net

Hugh Conlon (Board Member)
Tel: 091 751 750 Mobile: 086 803 6145
Email: hcon@eircom.net

Jim Costello (Board Member)
Tel/Fax: 01 620 6154 (Monday-Friday)
Tel/Fax: 01 260 0099 (Weekend)
Email: jjcos@indigo.ie

Bridie McMahon (Board Member)
Tel: 094 954 0285 Mobile: 087 958 0567
Email: sbmcmahon70@gmail.com

Eamon Porter (Board Member)
Tel: 01 845 5827 (W) Mobile: 086 225 3551
Email: eporter@aspire-wealth.com

Séamus Ó Cinnéide (Board Member)
Tel: 01 496 1133 (H) 01 708 3657 (W)
Email: seamus.ocinneide@nuim.ie or higgeide@gofree.indigo.ie

Evelyn Wainwright (Board Member)
Tel/Fax: 021 484 7313 Mobile: 086 882 9267
Email: evelyn99911@hotmail.com

Hugh Weir (Board Member)
Tel: 061 927 030 Fax: 061 927 418
Email: ballinakella@hotmail.com

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Committees

Compliance & Governance
John McFarlane (Chair)
Hugh Conlon, Jim Costello, Séamus Ó Cinnéide, Hugh Weir

Ethics & Member’s Benefits
Paula Lahiff (Chair)
Joan Bradley, Hugh Conlon, Séamus Ó Cinnéide

Fundraising
Hugh Hamilton (Chair)
Anne Burns, James Kinahan, Barbara McDonagh, Eamon
Porter, Evelyn Wainwright

Social Support
Anne Burns (Chair)
Susan Dowling, Tom Gallery, Maggie Gillespie, Paula Lahiff,
Barbara McDonagh, Bridie McMahon, Evelyn Wainwright,
Hugh Weir

Regional Reps
Tom Clifford (HSE Mid West), Paddy Fitzpatrick (HSE
Midlands), Paula Lahiff (HSE North West), Barbara McDonagh
(HSE West), Jackie Minnock (HSE North East). Povl Thim
(HSE South East), Evelyn Wainwright (HSE South)

Social Support Convenors
Edwin Bailey, Marie Boland, Francis Clancy, Brian Crummy,
Susan Dowling, Paddy Fitzpatrick, Joan Gargan, Nuala
Harnett, James Kinahan, Dolly Lawlor, John Mangan, Joseph
McGee, Bridie McMahon, Paddy Moyles, Sean Mulligan, Jim
Murphy, Eddie Roycroft, Povl Thim, Evelyn Wainwright

Phone Project Leaders
Peggy Brennan, John Dempsey, Leo Dempsey, Susan Dowling,
Tom Gallery, Geraldine Mardy, Shirley Martin, Patricia
Milburn, Christina O’Connor, Ann Pepper

POST POLIO SUPPORT GROUP (Ireland)
Unit 319, Capel Building, Mary’s Abbey, Dublin 7.
Tel: 01-8898920 Fax: 01-8898924
Email: info@ppsg.ie or visit our website: www.ppsg.ie

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FROM THE EDITOR

Photo of John Mc FarlaneSo much to say and so little space to do it, always a problem but a good one as it means there is plenty happening in the Group. This edition is full of both information and things that you as a member need to consider, and I hope help the Group face “THE CHALLENGE AHEAD”. Your opinions are valuable and valued, so help the planning team by reading the article and returning the card enclosed.

May sees the Annual Conference and AGM to be held in Limerick, there is a booking form enclosed, so get it in fast to avoid disappointment in finding all the places are taken. The theme this year is “Leading a Fuller Life” with the Key note speaker being Dr. Frans Nollet, from the University of Amsterdam, where he runs a unit looking at Post Polio Syndrome. Currently he is involved in ground breaking research in the use of Cognitive Behaviour Therapy to help patients. He will be supported by others talking on the subject of a fuller life. The afternoon will break into groups with diversity such as disability and gardening, how to get the best out of Citizens Information, swimming and hydrotherapy plus others yet to be confirmed. The day will finish with dinner and no doubt entertainment and merriment will be had by all.

At the Conference last year there was talk, and an example of what could be done to make orthopaedic shoes more appealing to those with a fashion sense (do not look at the Editor). This has progressed and the results can be seen in the article by Bridget Quigley O’Brien. Talking of the 2009 Conference many of you filled in a form asking your views and for experiences on physiotherapy, the results are here and make interesting reading.

Here is something that I thought I would never link together in “The SURVIVOR” – namely Post Polio Syndrome, Drugs & Sex & Rock & Roll. Before any of you recoil in horror the pop star and icon of the rock ‘n roll scene in the 70s and 80s, Ian Dury was a polio Survivor and has been immortalised in a film called after one of his songs – “Drugs & Sex & Rock & Roll”. The film, and his life are reviewed here.

Lastly, something that many in the Group may not be aware of is that PPSG sponsors research wherever it can, and where it can be shown to have particular relevance to polio Survivors and those with Post Polio Syndrome. In 2008 Deidre Murray gave a presentation in Sligo on the ongoing research at Beaumont, they need your help with 120 volunteers to help complete the research. The Beaumont Hospital leaflet explaining what it entails, and how you can help, is reproduced in full in this edition.

All that, the Regional Round up, snippets and other pieces makes this a bumper edition. Remember to book for Limerick, send back your views on the Group, and while you are at it, enter that photographic competition – see flyer enclosed.

So until Limerick, keep well, keep warm and safe. You can always reach me using the details below or any of the Officers and Board Members through the details on the inside front cover and Convenors’ contact details are printed in the Regional Round up.

At this festive season may I wish you all the best and whatever your faith or creed “May your God go with you”.

John McFarlane

In the meantime you can contact me through:
Tel: 087-2029830
Fax: 057-9353552
Email: newsletter@ppg.ie or jmcfarlane1@iolfree.ie

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2009 RAFFLE RESULTS

I want to say how grateful we are for the support received from so many towards the 2009 Post Polio Support Group Raffle. We were delighted with the outcome as through your support the total of €17,000 was raised which will go directly in helping support our members.

Hugh Hamilton, Chairman PPSG

The winners were:

1st Holiday Break Marriott Hotel Enfield Hilary Gale of Co Dublin
2nd Holiday Break Clifden Station House Philip Conway of Co Mayo
3rd Holiday Break Galway Menlo Hotel Angela McGuire of Dublin
4th Case of Muscadet Wine Tom Cullen of Co Kildare

All winners have been notified and prizes forwarded

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MISSION STATEMENT
Our Mission is to create awareness and to provide information regarding the late effects of polio among Polio Survivors, statutory agencies and the wider medical profession, and to ensure that the needs of Polio Survivors relating to their condition are met to enable them to live with dignity

TRAVELLING WITH A DISABILITY

Going abroad can present new challenges for people with disabilities. But there are steps you can take with your transport, accommodation, driving and travel insurance to ensure you have a safe and enjoyable trip.

Booking your holiday

Transport

You need to think about your needs over the whole journey

Make sure you ask the crew for it to be made available at the door on arrival. This is important because even if you give handlers instructions at the start of your journey, you may not be able to do the same with the handlers when you arrive.

Accommodation

Be specific about your requirements. Ask for whatever you need to make your stay comfortable. And ask for written confirmation that your requirements can be met.

Your travel agent or tour operator should be able to advise you. But you could also call the hotel, resort or cruise liner directly to speak to someone who is familiar with the rooms.

Driving abroad

Insurance

Health and Medication

Travelling with a Disability

If you are a frequent traveller with a stable impairment you may be able to obtain a Frequent Travellers’ Medical Card (FREMEC). This gives the airline a permanent record of your specific needs so you don’t have to fill in a form and make arrangements every time you travel.

When Booking your holiday through an agent or independently use this as a check list. Good planning usually ensures a relaxing and worthwhile holiday. Take it from one who is a frequent traveller by road, sea and air.

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USA AIR CARRIER ACT

Aircraft Accessibility

New regulations that came into force in America in May 2009 have further improved air travel for those with disabilities.

The changes include:

With modern materials and good design there are numerous access ramp solutions now available that provide disabled persons and commercial users suitable alternatives to concrete or timber ramps.

Concrete ramps are classed as permanent structures and usually require building control approval and possibly planning permission, they will also often hinder the sale of the property if left in place. Timber ramps although pressure treated have a short life span and providing a suitable slip-resistant tread surface can prove difficult.

Aircraft AccessibilityAccess Needs are a company that specialises in ramping systems and can offer a wide and varied selection manufactured from alternative materials. Based in Co. Armagh but covering all of Ireland, Access Needs truly offer a one-stop shop for portable and semi-permanent access ramps for easy access into homes, buildings and vehicles. Used widely in the private and industrial communities these types of ramps are proven to be a cost effective solution with minimal fuss. Our modular ramp system is a semi-permanent structure with the main advantages being that they can be removed and used in alternative locations without leaving repair work to buildings. Being modular the ramps can be used in single or in multiple combinations to obtain desired layout and gradient within a given area, often requiring none or very minimal groundwork.

Access Needs can supply many different alternative types of ramp manufactured from either G.R.P (Glass Reinforced Plastic), Aluminium, carbon fibre or rubber/plastic with each having there own individual benefits depending on your requirements.

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THE CHALLENGE AHEAD

A key challenge for the Post Polio Support Group is to plan for the future. Seeing into the future is always tough, making the right forecasts and the right decisions even tougher. Planning for hard times is certainly more difficult than planning for the good years. We must get this right to secure the future of our Group and maintain our supports for Polio Survivors.

Hugh Hamilton, the Chairman, has been reminding us that by September 1st the Group must have a successor plan to PLAN2010 in place. There is work to be done. We are indeed fortunate that PLAN2010 has directed the Group so well from September 2007 to the present. This experience and success will be a great help to us over the coming months while we put the steps in place to take the next leap forward. Many decisions have to be made, much background work and study have to be completed and, most of all we must get the views of YOU, our members and reflect your thoughts and hopes for Polio Survivors, in a practical way, in the new plan. We need a name for the plan. “PLAN2010+” is only a working title: any ideas? To allow sufficient time to launch the new plan and communicate its contents to the members, realistically, the Board must approve the new plan before 1st August.

Board members agreed at the February Board meeting to start the strategic planning process, to consult widely amongst the membership and other stakeholders and to make personal strategic inputs to the process. The Board members individually and the Board as an entity will have ongoing roles in directing and managing the process and, ultimately, approving the new plan to drive the Group forward over the coming years. Maybe you would like to talk to one of the Board members or drop a note to him or her!

Individual members are encouraged, starting now, to give ideas and make submissions and we guarantee that all will be facilitated to the maximum extent possible. The SURVIVOR and the website are important vehicles to trigger individual submissions particularly from those not attending the Annual Conference and AGM or Social Support Group meetings. This will commence at the end of February.

6 Questions to be addreessed are:

1. What new schemes should be started by the Group?
2. What are the activities that must be kept at all costs?
3. What can we do without if the money pressure comes on?
4. How long should we plan for?
5. What are our strengths and weaknesses?
6. What makes you most proud to be a member of the Post Polio Support Group?

The Annual Conference and AGM on May 8th will provide the greatest opportunity for face to face consultation with Polio Survivors and carers. Consultation with the Social Support Groups will be active and should peak around the same time as the Conference. Ideally the convenors should start the debate in their groups with a view to a pre planned consultation meeting with their members just about the plan. We want to get reports from this process! Consultation needs to be complete by the end of June.

From July 1st the Board will have just a month for developing the plan as there must be time to take all the views into account. We must deal with many matters of detail and presentation as part of the continuing involvement of all the Group in this strategic planning process. The Board will meet regularly and will develop the plan. There may be special consultation meetings set up to develop all or part of the plan and there may be small groups set up to look at special areas of study. Do you have time to help in this work? If so, why not drop a line or phone the office?

Make no mistake this work will push us hard!

It is a huge challenge but one we willingly face because we want to maintain the independence and dignity of Polio Survivors over the coming years. Many people depend on us all working together……..and……….getting it right.

Editor’s Note: There is a business reply postcard included with this issue allowing you to send in your views on the challenges the Group faces. Your views are valuable and valued. Please take a few minutes to fill it in, either by yourself, or with others and post it. I can assure you every single one will be read and taken into consideration.

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DID YOU KNOW

The Group tries to be available to assist Polio Survivors at all times.

If you need to talk to someone outside office hours or wish to speak to someone who had polio Joan Bradley will take your call on her home phone 01 4549237. Joan has an answering machine if she cannot get to your call immediately. If you leave your number and a short message Joan will return your call. Her only wish is that you please speak slowly and clearly, particularly if calling out a return phone number.

You are welcome to ring the office, 01 8898920, during working hours, generally 8.30 in the morning to 5.00 in the evening. The office has an answering machine also.

“SEX & DRUGS & ROCK & ROLL”

SEX & DRUGS & ROCK & ROLLA film biography of Ian (Robins) Dury (1942-2000) who contracted polio aged seven and spent time in Truro Hospital later being transferred nearer to his home in Braintree, Essex, where he spent a year and a half before going to Chailey Heritage Craft School, East Sussex, in 1951. Chailey was a school and hospital for disabled children, and believed in toughening them up, contributing to the observant and determined person Dury later became. As a polio Survivor he defied all expectations going on to become one of the founders of the punk-rock scene in Britain in the 1970s, later taking the USA by storm with his band the Blockheads.

The film’s cast is strong, especially the lead Andy Serkis (aka Gollum – Lord of the Rings, King Kong – King Kong) as Ian Dury, Naomie Harris (After the Sunset, Pirates of the Caribbean – At World’s End) as his girlfriend Denise and Bill Milner (Son of Rambow, Is there Anybody there?) as his son Baxter. The young Ian Dury is played by Hamish Thompson, 13 yrs old, and himself a polio Survivor and a member of the British Polio Fellowship, indeed their youngest member!

The film takes you through Ian Drury’s funny/ sad/ dynamic/ and often chaotic life with a collection of live performances, flashbacks and monologues – often driven by the great lyrics of the songs themselves. The director (Mat Whitecross) moves the film along at a good pace and gets the very best performances out of the cast – casting of Andy Serkis as Ian Drury was a masterstroke – although not nominated for an Oscar, it is still an amazing performance. One that would have even impressed Dury himself.

It is a very poignant, entertaining film – that fairly accurately depicts the life and times of the late, some say, great Ian Drury … a film that can be recommended to all but with particular relevance to those with any knowledge of the characteristics and determination of polio Survivors. For those who know the music of Ian Drury and the Blockheads – you will love this film … for those that haven’t heard the music before … “What a Waste!” … if you are of that generation you will be converted. “Reasons to be cheerful” sang Ian Drury and you will be especially when he “Hits you with his Rhythm Stick!” – for that’s what he called his walking stick.

Ian DuryEditor’s Note: In March 1996 Ian Dury was diagnosed with cancer and, after recovering from an operation, he set about writing another album and in early 1998 he reunited with the Blockheads to record the hit album”Mr Love-Pant”s. In May that year he and the band hit the road culminating in their last performance in February 2000. He died six weeks later on 27 March 2000.

The film has been on release nationwide on a limited basis and will shortly be on DVD.


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LAPWRAP

The Lap Wrap has been especially designed to wrap securely around the users legs and prevent drafts. This is because it remains in position, trapping a single insulating layer of heat around the user’s legs. This is achieved by the tailored cut of the blanket and the unique positioning of the Velcro closing mechanism. The LAPWRAP will not fall off. Also unique to this product is the ‘SNUGGUSSET’: which actually helps to generate heat. It does this by snugly fitting and excluding any drafts at the back of the user’s knees. This area behind the knees naturally generates heat as the upper and lower parts of the legs are in very close proximity to each other when a person is in a sitting position. When seated, this area is one of the warmest parts of the body. The SNUGGUSSET is designed so that it traps and maximises the heat that is naturally generated behind the user’s knees. The extra boost of warmth in this area is then naturally circulated to all parts of the legs and the body.

As one Health care professional who recently used the Lap Wrap for patients remarked “That blanket makes the user so cosy and snug that it has to be of great help in the area of pain relief”

The simple idea of Lap Wrap came about when Clodagh, a stay at home mum of two encountered problems when bringing her kids out in the buggy. She found that an ordinary blanket can be bulky, loose and often slips off and can get caught around the buggy’s wheels. Frustrated by no alternatives on the market, she set about designing SnuggleRug, which is a lightweight fleece fitted rug specifically designed for children in a sitting position and this led to the development of Lap Wrap.

Although the company is in its infancy, Lap Wrap is proving to be a hit with Irish consumers and Clodagh has appeared on the Late Late Show to talk about her design. Lap Wrap is also made by an established clothing manufacturing company in Ireland which is important to consumers. To find out more or check out the range go to www.lapwrap.ie. See our advertisement feature on the back page.

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“THESE BOOTS THAT I CAN WALK IN.”

I am sure there are post polio people like myself out there who have found it very difficult over the years to get nice comfortable shoes/boots that are fashionable and trendy as well as hardwearing. I remember as a child wearing those horrible black boots that ruined any outfit that you wore: no matter how pretty, you always felt that the footwear was not right.

Well last year I got the opportunity to suss out what was available regarding footwear via the Post Polio Support Group.

At our AGM last year Marie Boland from Limerick modelled a pair of shoes that she had bought; she was thrilled with them, and such was the interest shown by the members at the meeting that it was decided to investigate further on how we could help members with difficulty in finding footwear that was suitable for their needs.

To find out more, the Post Polio CEO Eamonn Farrell decided to investigate further. He got in touch with Tutty’s in Naas. They specialise in making shoes for all types of feet, and especially for people with disabilities, and who have problems with getting shoes made to measure.

A few weeks later I was contacted by Eamonn and asked if I would be interested in being involved in this project, of course I was delighted, as I have found it difficult to get shoes to fit my needs.

THESE BOOTS THAT I CAN WALK INProfessor Angela Woods and Linda Byrne from the National College of Art and Design, with the support of Enterprise Ireland, agreed to take part in this project helping to design the footwear. A visit was arranged with the owner, George Tutty in Naas. Linda told us that her grandfather had been an old style shoemaker from the Liberties in Dublin and that his handbill said “orthopaedic shoes a speciality”-wasn’t that a nice little connection?

At the meeting, we discussed design, and I helped with some advice on what shoes I thought people like me needed. After looking at various deigns and types of shoes and boots and with careful consideration, I chose the colour of wine red leather with lace up the front and a zip at the back of the shoe for easy access, the zip at the back is a great help as you don’t need to lace up all the time. You can also get them in black or brown.

George Tutty was very committed to the project and as he has been in the business for a long time, knows his stuff about the footwear needs and of people who have problems with mobility. After thorough measurement, he made a template of my feet; this took about half an hour. He then fitted me with special orthotic insoles, which are designed to provide greater support to the feet. I must say it did make a difference.

Two weeks later, I went back to Tutty’s with Angela and Linda we tried out the boots, which I had chosen. At this stage they were half finished as adjustments to my measurements were examined and the required changes were made. I was very pleased with what I saw and strutted up and down the office in the boots, to make sure that they were what I wanted and that they were comfortable. They looked sexy and fashionable and would team up with any outfit.

THESE BOOTS THAT I CAN WALK INThe following week, I went for my final fitting. I must say, the minute I put on the boots I was amazed how comfortable they were and that I could walk with a lot more confidence and support. Angela and Linda gave drawings showing a number of different design treatments for the boots to George so that there would be a range of styles available, not just the one!

Since I got my new boots I can’t take them off. I wear them with jeans and dresses and they look great I have got a lot of reaction from people asking where I got them. I am delighted with them: I know that I was privileged to be the model and I am looking forward to see the other designs made up. George hopes to show them to the members at the conference in Limerick in May.

Meanwhile, these boots are keeping me WALKING!!!!!!

Bridget Quigley O’Brien


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CONFERENCE 2010

LIMERICK CITY HELPS SPONSOR PPSG CONFERENCE & AGM

CONFERENCE 2010


Mayor Kevin Kiely presents a sponsorship cheque to Helen Jordan and Marie Boland, Convenor of the Limerick Social Support Group to help with the cost of the Annual Conference. The Mayor said he was delighted that the Post Polio Support Group had chosen Limerick for its gathering.

NOMINATIONS FOR BOARD MEMBERS

Just a reminder that if you would like to nominate someone for election to the Board of the Group. Please do so in writing to the office no later than 5 weeks before the Annual General Meeting that will be held on Saturday 8th May 2010.

You must get the Agreement of the person you are nominating (in writing) and they will be required to let us have a short résumé and a recent photo for circulation with the AGM notification.

WELL DONE THE MID WEST

Great thanks are due to all the members of the Task force organising the Annual Conference and AGM. The Limerick Strand Hotel is well placed in the city centre with great views of the Shannon. It has fine conference facilities and good accessibility.

Cecilia O Flaherty and the members of Limerick Civil Defence have offered to help with transport from the Bus and Train station to the hotel on Friday evening and the return journey on Sunday morning.

Members from North Tipperary, Limerick and Clare social support groups have put great work into the preparations. They have been getting speakers, organising sponsors and all the bits and pieces that need to come together for a successful conference. The work is not yet done and the rest of the members can look forward to being called upon to help out in the run up to May 8th.

We are looking forward to a great weekend

THOSE SHOES ARE MADE FOR WALKING

If you have customised shoes that are in reasonable condition, why not have them repaired? You may like to get the repairs done by the original shoemaker or by someone else. If you need some assistance with this why not contact Lillian at 01 8898920.

TIP FOR POLIO SURVIVORS

Many of us find that we can no longer get garments off, over our heads. Here is a tip that may assist. Sit on a chair at your bed or a low table. Lean over it, with your elbows on it, and stretch your hands back. The offending garment can then be gripped and pulled off. This can work for men or women. It can also assist with neck jewellery, unzipping and to turn down the collar of a coat.

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FUND RAISING – A THOUGHT

Christina O'ConnorIf you are celebrating an anniversary or other special occasion people are often at a loss for what to buy you – after all most of us have reached an age where we have most if not all we need for the house and ourselves. So why not suggest to family and friends if they are stuck for that “special something” a donation to the PPSG would never go amiss. All will be acknowledged and will be a benefit to a polio Survivor somewhere. You never know it might even be you!

Christina O'Connor enjoyed the Telephone Support training course at Cuisle in November.





This was the view from the office window on Friday 12th February
as a number of the classier shops on Capel Street were burned down










EXERCISE RESEARCH – POLIO SURVIVORS NEEDED!

Regular aerobic exercise is widely recommended to prevent health problems such as obesity, diabetes and heart disease. Many Polio Survivors find exercise difficult due to pain, fatigue and decreased mobility. Forty percent of Irish Polio Survivors do not engage in any cardiovascular exercise at all. Only 30% manage to walk for at least 10 minutes, 3 days a week. As a result, Polio Survivors in general, have poor levels of cardiovascular fitness and an increased risk of health problems.

EXERCISE RESEARCHResearch was completed in Beaumont Hospital between 2005 and 2007 which investigated mobility, pain, fatigue, and quality of life in Polio Survivors. This found that fatigue and pain levels were significantly higher in Polio Survivors than in healthy people of the same age. Polio Survivors used more than twice as much energy than a healthy person to walk at their comfortable walking speed.

The research findings suggested that exercise may help with some of these problems, but there are many barriers to exercise for Polio Survivors. It was established during this and previous research, that activity aggravates pain for many Polio Survivors. Many Polio survivors report that they cannot go for a long walk due to fatigue, limited mobility or pain. Swimming has been recommended as a good way to exercise, however many report that although the pool exercise is beneficial, getting to and from the pool can be exhausting.

We hope to identify an accessible, convenient and cost effective form of exercise that allows Polio Survivors to exercise in a way that minimises pain and fatigue. This research project will investigate the use of arm cycles in those who have weak legs, but stronger arms. Polio Survivors who have weakness in one or both legs and normal, or almost normal, arm strength can volunteer to take part. It is important that volunteers do not have severe neck or arm pain, or severe fatigue. People who are on certain medications, that affect heart rate will not be suitable.

EXERCISE RESEARCHIf you volunteer and are suitable for inclusion, you will be invited to attend for assessment in Beaumont Hospital. After the assessments you will be randomly assigned to either an exercise group or a non-exercise ‘control’ group. Comparing 2 groups of people who do and do not receive a treatment is a good way to figure out whether a treatment is effective. If you are in the treatment group a physiotherapist will visit you at home to set up your arm cycle. We will then repeat the assessments after 8 weeks of exercise.

We hope that over the next 2 years, 120 Polio Survivors will take part in this research, which could make a large contribution to our understanding of how exercise can be used to benefit Polio Survivors. If you would like further information please contact Deirdre Murray at 01-8092526 or deirdremurray@beaumont.ie, you may prefer to ask Professor Hardiman about the research at the Post Polio Clinic. Further information is also available on the PPSG website.

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EXERCISE RESEARCHPATIENT INFORMATION LEAFLET

THE IMPACT OF AN ARM ERGOMETRY TRAINING PROGRAMME ON CARDIOVASCULAR FITNESS, ENERGY COST OF WALKING AND FATIGUE IN PRIOR POLIO PATIENTS

Principal Investigator’s Name: Deirdre Murray
Principal Investigator’s Title: Physiotherapist (Beaumont Hospital) & PhD student (Royal College of Surgeons in Ireland)
Telephone No. of Principal Investigator: 01-8092526 or 01-8092956


You are being invited to take part in a clinical research study carried out at Beaumont Hospital. Before you decide whether or not you wish to take part, you should read the information provided below carefully and if you wish, discuss it with your family, friends or GP. Take time to ask questions – do not feel rushed or under any obligation to make a hasty judgement. You should clearly understand the risks and benefits of participating in this study so that you can make a decision that is right for you – this process is known as Informed Consent.

You are not obliged to take part in this study and failure to participate will have no effect on your future care. You may change your mind at any time (before the start of the study or even after you have commenced the study) for whatever reason without having to justify your decision and without any negative impact on the care you will receive from medical staff.

WHY IS THIS STUDY BEING DONE?

People who had Polio in the past, often experience new problems many years later. For example new problems with walking, pain, fatigue and muscle weakness. These problems can make carrying out regular exercise, as is recommended for general good health, very challenging. This research study is being carried out to investigate whether a programme of exercise, using arm cycles, is of benefit to Polio Survivors, who have leg weakness but who have stronger arms.

WHO IS ORGANISING AND FUNDING THIS STUDY?

Deirdre Murray (physiotherapist) is carrying out this study under the supervision of Professor Orla Hardiman, Consultant Neurologist and Dara Meldrum and Dr. Frances Horgan, physiotherapy lecturers at the Royal College of Surgeons in Ireland. It is being completed as a PhD research project. The Post Polio Support Group Ireland has provided grant funding, which allows this study to be completed and provides for travel expenses for participants. A company called Serono has also provided funding, which allows employment of a second physiotherapist who will carry out assessments, as part of the project.

HOW WILL IT BE CARRIED OUT?

The study will commence in November 2009 and will continue until approximately November 2011. This will be followed by approximately 6 months where the results will be analysed and the research written as a Thesis.

We hope that 120 Polio Survivors will take part. There will be 2 groups of 60 people each. People who volunteer to take part will be assigned at random to either an exercise group or a non-exercise (control) group – i.e you will not be able to decide which group you would prefer to be in. This will allow us to compare people who have exercised with people who have not exercised. This is a good way to find out whether a treatment is effective.

WHAT WILL HAPPEN TO ME IF I AGREE TO TAKE PART?

If you agree to take part you will first be assessed to ensure that exercise is safe for you. This will be done by a doctor at the monthly post polio clinic and will involve asking some questions about your health and having some basic tests like having your blood pressure checked.

Once we are sure that exercise is safe for you, we will make an appointment, at a time convenient to you, for assessment at the Physiotherapy department in Beaumont Hospital. It would be best for you to wear comfortable clothing for this appointment.

On the day of your assessment you will complete a number of questionnaires, with the physiotherapist, asking about your health, and in particular about your current activity levels and any pain or fatigue that you experience. You will also carry out an exercise test, which involves cycling using an arm cycle for 6 minutes, while having your heart rate monitored and walking for 6 minutes, also while having your heart rate monitored. The muscle strength of your arms will be tested using a machine called the QMA. While these tests may be challenging for you, they should not cause you any pain. We may ask you to return for a second exercise test within one week, in order to check whether this measure is reliable in polio survivors.

At the end of this assessment we will ask you to select an envelope from a box, which will indicate whether you will be in the exercise group or the non exercise group. The physiotherapist who carried out the assessments will not look at which group you are in. Deirdre Murray will look at which group you are in and can discuss with you what it means.

People who are in the exercise group will be provided with small stationary pedals (Figure 1) and will carry out arm cycling exercise, at home three times per week for 8 weeks. The physiotherapist (Deirdre Murray) will visit you at home to set up the arm cycle and will be contactable by telephone if you have any problems. People who are not in the exercise group will be provided with normal physiotherapy care including a home exercise programme. At the end of the eight week exercise period you will be asked to return to Beaumont Hospital for repeat assessments, which are the same as those tests carried out on your first visit. By repeating the assessments we will assess whether there has been any change after exercise. We will also be able to see whether those people who have exercised using the pedals, are different to those who have not exercised using the pedals.

After the study has been completed, people who were in the non exercise group will be given an opportunity to try the exercise. These people will be advised whether the exercise was of benefit to those who were in the exercise group.

WHAT ALTERNATIVE TREATMENTS ARE AVAILABLE TO ME?

If you choose not to take part in this study, you will receive normal medical care, which may include physiotherapy assessment and treatment. This routinely includes a muscle strength test called QMA, advice and if appropriate a home exercise programme.

BENEFITS:

It is known that Polio survivors can improve their cardiovascular fitness by exercising. This programme meets recommendations for exercising in Polio survivors and aims to provide a convenient form of exercise. The possible benefits of improved fitness include improved well being, improved energy and lower risk of cardiovascular disease. Exercise in conjunction with diet can result in weight loss.

RISKS:

Although we aim be as careful as we can in prescribing each person’s exercise programme, there are risks involved in exercising, especially if you are not accustomed to exercising. There is a risk of having a heart attack, and this is why we ask a doctor to assess each person before they start the programme. There is also a risk of developing arm pain or increased fatigue due to exercising using the arm cycle. If this happens you should contact the physiotherapist (Deirdre Murray) for advice. There is a small risk of falling while carrying out the walking test, although no greater a risk than walking in everyday life.

WHAT IF SOMETHING GOES WRONG AS A RESULT OF MY PARTICIPATION IN THIS STUDY?

If you experience any problems as a result of participating in the study Deirdre Murray will be responsible for dealing with these problems and will ask the help of Professor Hardiman if required.

WILL THERE BE ANY ADDITIONAL COSTS INVOLVED?

Travel expenses incurred while travelling to Beaumont for assessment will be reimbursed. We will ask you to complete a form in order to process your travel claim.

YOUR RESPONSIBILITIES AS A PARTICIPANT

As a participant you have a responsibility to follow the instructions provided to ensure that you are exercising effectively and safely. You are responsible for reporting any difficulties that you have to Deirdre Murray and for reporting any changes in your health that may affect your ability to participate. We also request that if you are unable to attend for assessment, or are unavailable for a visit at home for provision of your exercise programme that you provide adequate notice (at least 24 hours) to the researchers.

OUR RESPONSIBILITIES TO YOU AS INVESTIGATORS

As investigators it is our responsibility to carry out the study in the manner approved by the Ethics committee. We have the responsibility to provide you with any new information as it becomes available during the course of the study – this may effect your willingness to continue to participate. We have the responsibility to withdraw you from the study if the exercise programme is having a negative effect on your wellbeing – ie if you have greater pain or fatigue.

CONFIDENTIALITY ISSUES

Standard procedure involves notifying your GP that you are taking part in this study, but you can refuse to have your GP contacted, if you wish. The physiotherapists will look at your medical chart and will place a copy of your consent form in the chart. Your data will be coded. While your data is being analysed the researchers will only have these codes and not your name. A statistician will also look at the coded data in order to assist with analysis. Deirdre Murray will have access to the code for each individual. The data will be kept for 5 years on encrypted memory stick, on a password protected desktop computer and in a filing cabinet in the physiotherapy department. 5 years after the end of the study it will be destroyed. We may contact you in the year following the study to follow up on how you are, but this has not yet been decided.

IF YOU REQUIRE FURTHER INFORMATION

If you have any further questions about the study, or if you wish to withdraw from the study you may do so without justifying your decision and your future treatment will not be effected.

For additional information now or any future time please contact:

Deirdre Murray
Physiotherapy Department, Beaumont Hospital, Beaumont, Dublin 9.
Phone No: 01-8092956 or 01-8092526

Professor Orla Hardiman,
Neurology Department, Beaumont hospital, Beaumont, Dublin 9.
Phone No: 01-8092714

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Bray Group

Location: Bray
Area: South Dublin, North Wicklow
Contact: Nuala Harnett and Maggie Gillespie
Tel: 086-8582406
E-mail: tonygarrow@eircom.net
Meetings: Meets at 8 pm on the first Tuesday of most months from March to October or November

If you live in this area and would like to attend these social meetings, please give Maggie a call.

Libby HendrixWe were very fortunate to secure Mark Goulding, the Acupuncturist and Herbalist, for our November meeting. Mark’s talk included an introduction to Acupuncture and Traditional Chinese Medicine (TCM), general tips on TCM that might be applicable to the Group and also current research; this was followed by a lively question and answer session. Mark had proposed the possibility of undertaking individual tongue diagnosis, a technique which is used to establish someone’s constitutional health according to TCM. Thinking that our members might be a little uncomfortable about putting their tongue out in public this proposal was tentatively raised at the meeting. In the event, this proved extremely popular and everyone present took the opportunity to have a tongue diagnosis leaving little time at the meeting to discuss any other business.

Our Christmas dinner was held at the beginning of December in the Glenview Hotel. The Hotel provided an excellent menu, far exceeding the usual ‘turkey and ham’ and looked after us very well. Reluctant to incur any unnecessary outside costs, the group provided their own entertainment drawing on the wealth of talent within the group. Solos were given by Therese, Anne, Billy, Fran, Catherine and Goodwin who also acted as the Master of Ceremonies. Joe played the pipes and Marie and Joyce read poems. Judy Cameron, a friend of the group, brought along a keyboard, words of popular songs were provided and the group then enjoyed an old fashioned ‘sing song’ until it was time to go home.

Meetings of the Bray Group resume again in March and the next meeting will be in the Glenview Hotel at 7.30pm on Tuesday, 2nd March where we look forward to meeting up with everyone again.

Maggie Gillespie

Castleblayney Group

Location: Glencarn Hotel, Castleblayney
Area: Monaghan; Cavan; Louth.
Contact: Jim Murphy
Tel: 042-9371266
Meetings: Meets four to five times yearly on Mondays at 3pm

If you live in this area and would like to attend these social meetings, please give Jim a call.

A great Christmas gathering was had by all in Castleblayney on December 8th. In total 20 attended, made up of members and their guests. A lovely meal was served by the Hotel which was enjoyed by all.

Jim welcomed everyone and thanked those who had given presentations throughout the year so far. He thanked Anne Shanahan and Terry, in their absence, for their support and for taking the trouble to call to the Hotel just before our meal to say Hello and wish us well. Jackie read the notices from the Office and encouraged those present to get involved in the various activities on offer.

We organised the date for our next meeting – 2nd February 2010 - and after a few photos and more chat we went home, well fed and looking forward to our next meeting.

Jackie Minnock

The Group had its first meeting of 2010, with 14 people in attendance, and all were in great form after the Christmas break. We had two new members following advertising of the meeting, a survivor and their partner and it was great to see a new face in the room.

For the first part of our meeting we had a very good presentation by Geraldine Gorman from the Occupational Therapy Department of the Monaghan HSE. Geraldine informed us of the methods and means of keeping ourselves as independent as possible and encouraged us on how to make initial contact for an OT visit and assessment.

After Geraldine’s presentation we had our “cuppa” and the announcements were made. We have arranged our next meeting for March 23rd at 2.30pm in The Glencarn Hotel. If any members of S/S Groups will be in the area on that day please feel free to come along.

Jim Murphy

Clare Group

Location: DPOC Ennis
Area: Clare
Convenor: Edwin Bailey
Tel/fax: 061-368373
E-mail: edwin.bailey@eircom.net
Meetings: Meets four to five times yearly on Wednesdays at 8 pm

If you live in this area and would like to attend these social meetings, please give Edwin call.

WWe held our autumn meeting on the 15th October 2009, twelve people attended. Mr. Hugh Hamilton (Chairman) addressed the meeting and kept us up to speed with head office affairs.

The date and location for the Christmas party was agreed after which different groups chatted about their experiences over the usual light refreshments.

We held our Christmas party in the Abbey Tavern, Quin and twenty people attended. The meal was beautiful. Dr. Hugh Weir had the usual line up of interesting questions for a quiz and supplied lovely prizes. Mr Edwin Bailey conducted the carols, words and all supplied and we finished off with the raffle.

To me PPSG was at its best during a lull when two ladies with trousers rolled up to the knee were comparing callipers - that is the real meaning of “Self Help”.

Our next meeting will be in mid March. Looking forward to meeting you all at the AGM

Tom Gallery

Editor’s Note: This meeting was the last that Tom chaired as Convenor. Our thanks to him for all his hard, unstinting work for the Group and its members over the years. Edwin Bailey is taking up the reins, we wish him well, and know that Tom will give him every support.

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Cork Group

Location: Vienna Woods Hotel, Cork.
Area: Cork; Kerry.
Convenor: Evelyn Wainwright
Tel/fax: 021- 484 7313 or 086-882 9267
E-mail: evelyn99911@hotmail.com
Meetings: Meets four to five times yearly on Wednesdays at 8 pm

If you live in this area and would like to attend these social meetings, please give Evelyn a call.

CORK PPSG SOCIAL GATHERING January 2010

Our first gathering for 2010 was held at the Vienna Woods Hotel on 20th January. It was heartening to see so many there – virtually a full house. Unsurprisingly, one of the main topics of conversation was the recent inclement weather. We all had our own personal experiences to relate, but happily we had all survived and were glad to get together after being virtually confined to our homes for weeks.

Evelyn welcomed everyone and wished us a happy New Year. She advised us to keep in touch with Lillian, who, in spite of a heavy workload, will try to look after everyone’s needs. The AGM takes place at the Strand Hotel, Limerick on 8th May. Civil defence personnel will be available to transfer people from the train station to the hotel. The recent raffle was a huge success, raising an excellent €17,000. Well done to everyone. Evelyn also spoke about a Medical Alert Card which she had found on the PPSG website, and which you can download. You fill in your personal details and carry the card with you. This will alert medical personnel, either at home or abroad, to the fact that you are a polio survivor, and will help them to deal with whatever injury or illness you may have, and advise them of treatments that might not be suitable for you.

Tony Lyons then gave us some information about an alert kit for people living alone or housebound. It consists of a box containing a card in which you fill in your personal and medical details. Then leave it in a prominent place in your home – say by your telephone. If the emergency services are called they will find the box with all this valuable information and this will help them to act promptly. Information about this alert kit, or the Medical Alert Card, can be obtained from Evelyn.

Joan McDonnellThen we had a presentation on investments by personnel from New Ireland Assurance. Damian Smith explained in layman’s terms some of the reasons behind the recent financial crisis and recession. His information on equities, stock markets and shares, and other financial matters, was most informative and interesting. His talk was illustrated by a slide show with Alan operating the projector. We’re very thankful to Damian and Alan, and to Dennis O’Sullivan who organised the presentation, for giving us their valuable time.

Afterwards, it was time for refreshments and mingling and chat. We broke up reluctantly. There was so much more to talk about, but we’ll catch up again at our next gathering on 24th March. Our guest speaker for that event will be Gail, and she will speak on gardening, a perfect subject for spring. If you have any questions for her, write them down and bring them along on the night. And bring a friend too.

Our thanks to everyone for making our night a success, especially to Michelle and Geraldine, the hotel staff, our guests from New Ireland Assurance and to Evelyn, who is the heart of our group in every sense of the word.

Vincent McDonnell

NEXT SOCIAL GATHERING, 24TH MARCH 2010 AT VIENNA WOODS HOTEL, GLANMIRE, CO.CORK AT 8 pm

At our next social we will have the pleasure of Gail telling us all about gardening. On the night Gail will make up some containers, unusual and recycled the better, showing how easy module planting is. So now if you would like to come along, with family or friend, you will be more than welcome. Remember 8 pm starting time.

Evelyn Wainwright

CHRISTMAS DINNER

On 14th November 2009 a group of Cork members of the PPSG made their way to the Cork greyhound track for our annual Christmas Dinner. We were fortunate to have booked our own suite away from the madness of the main hall and we were soon seated and catching up on all the gossip.

Once we had browsed the menus the waiter/waitress took our orders which allowed us to get down to the serious business of checking the form of our favourite dogs. Some of us had been here before and were smart enough to bring the tips sections from the precious night’s paper, for all the good it would do us!

Soon after the food was served the bell rang, the hare ran and the traps opened. We were off!

Amidst shouts of “Come on trap 3”and “Go on no 2” you could also hear the odd “How’s the beef Jim?” or “The soup is great”.

As the night went on so did our desperate search for a winner. The tips section had long been discarded. We bet based on trap number, dog colour anything that we thought might bring us luck.

When the table was cleared, the losing slips ripped up and the dogs gone home we added up our winnings and losses. The overall figure we will keep to ourselves, but the main thing was that all enjoyed their night out and hope that next year’s night out will be just as memorable.

Georgina O’Donovan

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Donegal Group

Location: Clanree Hotel, Letterkenny or The Villa Rose Hotel Ballybofey
Area: Donegal; Derry
Contact: Donal K. O’Boyle
Tel/fax 074-9103316
E-mail: donalkoboyle@eircom.net
Meetings: 2-3 times a year at 8pm

If you live in this area and would like toattend these social meetings, please give Donal a call.

We chose to have our Christmas party in the Villa Rose Hotel Ballybofey as it is situated half way between Donegal Town and Letterkenny. It was a gala evening with comedians, music, singing and dancing and was enjoyed by all.

Anne Shanahan

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Dublin All Hallows/Finglas Group

Location: All Hallows College, Drumcondra
Area: North Dublin
Contact: Eddie Roycroft
Tel/fax 087-2800010
Meetings: Last Wednesday of the month. Daytime
If you live in this area and would like to attend these social meetings, please give Eddie a call.

The Dublin All Hallows group has gone from strength to strength in 2009 and we hope to keep it that way in 2010. Our meetings take place on the last Wednesday of every month from 11.30am – 3.30 pm in All Hallows College, Drumcondra, tea/coffee sandwiches are served in the canteen. New members are always welcome. We hope to be able to organise meetings in the evening for people who work during the day.

For more information ring Bridget at 086-3464290 or Eddie at 087- 2800010

Bridget Quigley O’Brien

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Dublin South/West Group

Location: Maldron Hotel, Tallaght. (Formerly The Tower Hotel)
Area: Dublin south and west.
Contact : Frank Clancy
Tel : 087-9461129
E-mail: patwguy@gmail.com
Meetings: Meets four to five times yearly on Mondays or Tuesdays - alternating between afternoon and evening meetings

If you live in this area and would like to attend these social meetings, please give Frank a call.

Oh! What a great time, we drank bottles of wine; we ate creamy spuds that did us no good and we had turkey and ham to beat the band (that’s the waist one). Yes, we had a good old time at the PPSG Christmas dinner at the Maldron Hotel. The staff was excellent and as for the chef, well, he or she was the salt of the earth. There was a marvellous turn out from the members, round about thirty to forty wonderful people attended. I’m sure everyone will agree that it was a very enjoyable evening and join me in thanking the organizers for their time and effort. The committee will be in touch soon regarding our next meeting. In the meantime, if you have any problems let us know, we are here to help each other. If you have any thoughts on how to improve our group let us know that too.

Frank Clancy

Dublin Swords Group

Location: Carnegie Court Hotel, Swords
Area: North Dublin
Contact: Joe McGee
Tel: 086-8137195
Email mcgeeaj@gmail.com
Meetings: Monthly. Daytime.

If you live in this area and would like to attend these social meetings, please give Joe a call.

We had our December meeting on 9th, also turned out to be budget Day. The group met up at 3.30p.m which was also the time of the speech so needless to say no official business was done as everyone had an interest in finding out how we were all going to be affected as a result. I was working myself and joined them in the Lounge during the following debate and they were all in good form and not unduly upset by any of the fallout. I do not know if anyone recorded names of attendance but there was around twelve of us including some partners. We had a lovely meal in the restaurant and enjoyed each others company. A few tips were passed on during the dinner, in relation to various topics that were being discussed, which I recall being wide and varied.

Joe McGee


Enniscorthy Group

Location: Riverside Hotel, Enniscorthy
Area: Sth. Wicklow; Wexford; Waterford.
Convenor: Povl Thim
Tel: 053-942 1857 or 086-810 7598
E-mail: povlthim@gmail.com
Meetings: Meets 1st Tuesday of the month at 8pm, except December, January & February

If you live in this area and would like to attend these social meetings, please give Povl a call.

Enniscorthy Group had a visit by Hugh Hamilton on the 3rd of November and we had a good chat with Hugh, all present enjoyed the evening and were happy that Hugh had travelled down to us.

Enniscorthy Group is now registered with the County Wexford Forum, and with special interest in the Disability cluster. This means we are directly involved in the efforts of getting the Engineering section and the Planners to improve the accessibilities for wheelchair users, the visual impaired etc. in the streetscapes of the Towns in the County. It makes a lot of work, but it is worth it.

We held a very pleasant Christmas Lunch on Sunday the 13th of December in The Riverside Park Hotel in Enniscorthy. Our steady supporters turned up plus one or two people which we very seldom meet up with. Everyone enjoyed the meal, and we had a lovely afternoon exchanging all sorts of stories.

Povl Thim

Editor’s Note: Povl besides sitting on the Gorey Area Committee has now been selected to sit on the County Executive Board. Our Congratulations.

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Galway Group

Location: Menlo Park Hotel, Galway
Area: Galway-South; Mayo.
Convenor: Bridie McMahon
Tel: 087-958 0567
E-mail: sbmcmahon70@eircom.net
Meetings: Meets four to five times yearly on Wednesdays at 8 pm

If you live in this area and would like to attend these social meetings, please give Bridie a call.

Kerry Group

Location: Manor West Hotel, Tralee
Area: Kerry; West Limerick
Convenor: Dolly Lawlor
Tel: 066-718 5475 or 087-2043795
Meetings: Meets four or five times yearly on a Sunday afternoon

If you live in this area and would like to attend these social meetings, please give Dolly a call.

We held our Christmas lunch on 6th December at the Manor West hotel. We were delighted to welcome Evelyn and our usual supporters from the Cork group. It was a very pleasant and sociable afternoon.

Dolly Lawlor

Kilkenny Group

Location: Days Hotel, Kilkenny
Area: Kilkenny, Waterford, South Tipperary
Convenor: Susan Dowling
Tel: 059 9726998
E-mail: dowlingsl@eircom.net
Meetings: 4-5 times a year on Mondays at 7.30 p.m.

If you live in this area and would like to attend these social meetings, please give Susan a call.

Surprisng Assumpta BarryThe group’s Christmas Meal took place on 1st December and was attended by 26 members and their guests. This year, it was decided to chose a location where we could have a private function room with bar and toilet facilities and the Newpark Hotel seemed to cater for our requirements. We enjoyed a lovely meal which was followed by musical entertainment and a raffle. The music was provided by John Travers who gave us a wide variety of music on four different instruments and was greatly enjoyed by everyone.

There were 5 raffle prizes: 1st Prize of an overnight stay at the Newpark Hotel was won by Josephine Morrissey of Clonmel. 2nd Prize went to Sean Bennett and was a bottle of bubbly in a handmade holder made and donated by Tess Redmond. 3rd Prize of CD rack was won by Mary McGrath of Waterford. 4th Prize went to Rose Shelley and was a bottle of red wine donated by Marie and Jim Barrett. 5th Prize was a tin of chocolates and was won by Seamus Howley of Mullinavat.

Susan Dowling

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Limerick Group

Location: Strand Hotel, Limerick
Area: Limerick; East Clare; Nth.Tipperary.
Convenor: Marie Boland
Tel: 061-417928. 086-87771400
Meetings: Meets four to five times yearly on Mondays at 7.30pm

If you live in this area and would like to attend these social meetings, please give Marie a call.

On November 9th 2009 Mr. Senthilkumar Periasamy from First Steps Rehab. Centre, Patrickswell, Co. Limerick was our guest speaker. According to Mr Periasamy, when he was approached about speaking to our gathering he researched the subject and was surprised that he had difficulty finding the information he required. There was no update done on the subject. He found similarities in polio survivor cases in Ireland and in his own country, India. He had brilliant ideas regarding treatment for repetitive stress, pain relief, fatigue and many other conditions. He spoke for ninety minutes. Two members of the Limerick group are already attending his clinic. He also has one other post polio client. Mr. Periasamy expressed a willingness to attend the General Conference in May.

On November 30th the Christmas dinner was held in the Strand Hotel. It was a gala function, food, presentation and service were A1. After dinner we had music by Molly Prendergast (a friend of PPSG) on the electric organ. Many people sang and enjoyed themselves. There were excellent prizes (all donated) – a real party atmosphere – a great time was had be all.

Marie Boland

Mayo Group

Location: The Courthouse Hotel
Area: Ballina; Belmullet; Westport.
Convenor: Bridie McMahon
Tel: 087-9580567
E-mail: sbmcmahon70@eircom.net
Meetings: Meets twice yearly on Wednesdays at 8pm

If you live in this area and would like to attend these social meetings, please give Bridie call.

Midland (Athlone) Group

Location: Cregan Court Hotel, Athlone
Area: Westmeath; Roscommon; E. Galway
Convenor: Jimmy Kinahan
Tel: 0906 481372 or 087 6768076
E-mail: jtkinanah@gmail.com
Meetings: Meets twice yearly at 8pm

If you live in this area and would like to attend these social meetings, please give Jimmy a call.

Athlone PPSG Christmas Party

Athlone PPSG Christmas PartyWe held a short formal meeting before the meal, which was attended by Hugh Hamilton, Chairman of the organisation. This function took place at the Hodson Bay Hotel, Athlone, on the 13/11/09. There were fourteen people present and apologies from ten people, who were unable to attend.








The main items discussed at the meeting were:

Having concluded the meeting we went to the Christmas dinner.

The meal was excellent and most enjoyable and of course the usual Christmas fare was part and parcel of it. Hugh Hamilton joined us and our special guests were Brian Crummy and his wife Dolores.

After the meal we had a wonderful night of singing and story telling; and Hugh Hamilton remarked on the very high standard of singing and all round performance and everybody present participated. It must be acknowledged that Nuala Harnett’s two books, Party Pieces, were very useful and used all night.

We should say thanks to Nuala for those excellent books.

The Convenor, Sean Mulligan reluctantly called proceeding to an end well after mid-night and wished everybody a very Happy Christmas.

Sean Mulligan

Editor’s Note: This meeting was the last that Sean chaired as Convenor. Our thanks to him, Joanne, and their daughters, for all their hard, selfless work over the years. James Kinahan is taking up the reins, we wish him well and know that Sean will give him every support.

Navan Group

Location: Ardboyne Hotel, Navan, Co Meath
Area: Meath; Louth
Contact: Joan Gargan
Tel: 046-9432956 or 086 3753024
E-mail: joangargan@eircom.net
Meetings: 4-5 times a year on Mondays at 7.30 p.m.

If you live in this area and would like toattend these social meetings, please give Joan a call.

We had our first Christmas Party on 7th December in the Ardboyne Hotel in Navan. The hotel staff had the tables set out in a square which made it very easy to see everyone and have a group chat. Everyone was dressed up to the nines and all were in great form and looking forward to a great night. The meal was lovely and we all ate our fill and a bit more! We exchanged opinions and tips on how the country should be run which would put the present government to shame! We all had a great time and realised that we are a new group and already we are forging new friendships and sharing life experiences. Here’s to many more enjoyable nights!

Joan Gargan

Newbridge Group

Location: Keadeen Hotel, Newbridge
Area: Carlow; Kildare
Convenor: Paddy Moyles
Tel: 059-9141283 (Evenings)
Meetings: 3-4 times a year on Mondays at 7.30 p.m


If you would like to attend these social meetings, please give Paddy a call.

Our Christmas party was held on 6th December at the Clanard Court Hotel in Athy, Co Kildare. The total number of members attending was nine but although the numbers were low the function went down extremely well with excellent service as usual from the hotel staff assigned to our group. The evening started with a four course meal followed by music provided by a local musician. This was followed by a raffle where all members attending were guaranteed a prize.

The next meeting will be held on Tuesday 2/3/2010 at the Kadeen Hotel, Newbridge, Co Kildare at 8pm.

Vincent Scully

Sporting Events

In conjunction with the Kildare Sports Partnership, the PPSG submitted a team for the ten pin bowling tournament held at the K-Bowl in Newbridge on 3/12/2009. The team of six was drawn from the Newbridge and Tallaght branches of PPSG (three from Newbridge, and two from Tallaght) with Hugh Hamilton, our chairman, completing our team numbers. The event went down very well and was enjoyed by all. All team members were able to participate with ease with the introduction by K-Bowl of lighter bowling balls with larger finger grips. On completion of the event the team retired to the Toughers restaurant for refreshments and to review proceedings.

The next meet is scheduled is 23 and 25/2/2010 at the K-Bowl, Newbridge from 11am to 1.30pm with an entrance fee of €4 per person. Should any members be interest in participating they can contact me: Vincent Scully at 087-2284210.

Portlaoise Group

Location: Heritage Hotel, Portlaoise.
Area: Offaly; Laois; Nth. Kilkenny.
Convenor: Paddy Fitzpatrick
Tel: 0505-46738
E-mail: paddyfitz3@eircom.net
Meetings: 4-6 Times a year.


If you live in this area and would like to attend these social meetings, please give Paddy a call.

Bernie O'SullivanLaois/Offaly support group members and partners attended its Christmas party at The Maldron Hotel, Portlaoise. It was a party night with a mulled wine reception to start, Christmas dinner to follow and the usual finishers, with party hats and crackers too.

Then the party really got going led by a good group which had all present dancing, or wanting to! This session was shared with other party groups from the dining area, so the night really delivered a festive feeling. Well done to the hotel and our faithful members.

Bernie O’Sullivan



Sligo Group

Location: City Hotel, Sligo
Area: Sligo; Sth. Donegal; Nth. Leitrim; Nth. Roscommon.
Convenor: Brian Crummy
Tel: 071-9160404
Meetings: To be arranged


If you live in this area and would like to attend these social meetings, please give Brian a call.

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POST POLIO SYNDROME

A PILOT STUDY ON PATIENT SATISFACTION

Frank Sheahan B.Sc. MISCP MCSP
Jennifer Sheahan B.Sc

“Post Polio Syndrome (PPS) is a condition resulting in new symptoms in people who had polio years earlier but who have had functional and neurological stability for at least 15 years” (1). A rough estimate suggests that there were approximately 7,500 survivors of polio living in Ireland in 2007 (1). Research has suggested that 40-60% of these survivors will experience symptoms in the period 20-40 years after their original infection. Applying this to Irish statistics, we can deduce that 3,000 to 4,200 survivors of polio have either already developed PPS or will develop it in the near future (2).

The Post Polio Support Group Ireland provides invaluable support to some 800 members, consisting of post polio sufferers, polio survivors, their family members and friends, and also to members of the care profession. (3)

Physiotherapy plays a vital role in the management of PPS. With so many people in Ireland living with the condition, it is important that physiotherapists are aware and capable of recognising, evaluating, and treating the symptoms of PPS.

A simple patient satisfaction questionnaire querying the basic aspects of physiotherapeutic care as experienced by the patient was distributed at the 2009 AGM of the Post Polio Support Group Ireland (PPSG). The questionnaire contained ten basic questions that cover the most important aspects of physiotherapy treatment from the point of view of the patient. We must stress that this article relies solely on patient viewpoints of past experiences, and on opinions expressed to the authors by members of the PPSG.

As a physiotherapist, the author has been made aware of a perceived deficiency in the awareness and management of PPS by physiotherapists in Ireland. This has come about as a result of anecdotal reporting by patients and families of PPS sufferers. It is interesting to note also that in the course of carrying out this small survey, the same perceptions were reported verbally and in written comments on some of the questionnaires. In many cases the verbal comments were delivered passionately. The aim of this basic preliminary study was to assess patient satisfaction with physiotherapy amongst people living with PPS. Should the results show a significant level of patient dissatisfaction, we propose to create a more detailed survey for distribution to every member of the PPSG. The final aim will be to raise awareness of PPS amongst the physiotherapy profession and to improve the quality of care for patients.

We compiled a simple survey with ten statements relating to the experiences of the patients with physiotherapy. We used this type of survey to ensure our results were qualitative. There were two sections, one pertaining to the quality of treatment, and the other to the benefits felt by the patient. The statements were to be graded on a basic scale - poor/fair/good/excellent. Thus the very nature of the survey and grading system makes the results of the study entirely subjective and solely from the point of view of the patient.

A sample of the questionnaire is below.

Patient Satisfaction Questionnaire

Please answer as accurately as possible and feel free to write any additional comments on the beck of this sheet. Your name is NOT required. Confidentiality is assured. Those results will be used as part of an independent study aimed at finding ways to improve physiotherapy care for post polio patients. Your time and effort s very much appreciated.

Quality of Treatment Poor Fair Good Excellent
Please rate the ability of your physiotherapist to put you at ease and reassure you? checkbox checkbox checkbox checkbox
Please rate how well your physiotherapist understands your needs? checkbox checkbox checkbox checkbox
Please rate how well your physiotherapist explains treatment to you? checkbox checkbox checkbox checkbox
Please rate how well your physiotherapist carries out your treatment? checkbox checkbox checkbox checkbox
How is the communication between you and your physiotherapist.?
(For example, do you feel comfortable asking questions and does the physiotherapist listen?)		 checkbox checkbox checkbox checkbox
Benefit of Treatment        
How do you feel during the treatment? checkbox checkbox checkbox checkbox
How do you feel in the days after the treatment? checkbox checkbox checkbox checkbox
Please rate the improvement you experience due to treatment checkbox checkbox checkbox checkbox
Please rate the desire to continue / return to physiotherapy treatment checkbox checkbox checkbox checkbox
Please rate your overall satisfaction with physiotherapy treatment checkbox checkbox checkbox checkbox

This survey has been issued by Frank Sheahan, M.S.C.P., M.I.S.C.P., a private physiotherapist based in Limerick and Jennifer Sheahan B.Sc., a final year physiotherapy student based in Limerick. Contact physiotherapyirl@hotmail.com. Special thanks to Ms Noreen Mullane

108 surveys were handed out to PPS sufferers at the AGM. Of the 108 surveys distributed, 67 were returned. 19 of these were returned empty. Some gave the reason that they had never had physiotherapy treatment, the rest did not explain. 12 questionnaires were returned with no answers filled in, but with extra comments which will be discussed in the next section. 36 completed questionnaires were returned, giving a return rate of 33.33%. The results are tabulated below. The numbers indicate the number of people who gave that grade to each answer.

Question Poor Fair Good Excellent
1 4 8 9 15
2 6 7 13 10
3 4 5 12 14
4 4 6 11 15
5 7 5 10 13
6 2 15 13 5
7 4 6 22 2
8 7 7 18 4
9 7 5 9 14
10 7 5 9 4

This table shows the above numbers as percentages of the total answers received for each grade of each question.

Question Poor Fair Good Excellent
  % % % %
1 11 22.2 25 41.6
2 16.6 19.4 36 27.8
3 11 13.9 33.3 39
4 11 16.6 30.5 41.6
5 19.4 13.9 27.8 36
6 5.5 41.6 36 13.9
7 11 16.6 61 5.5
8 19.4 19.4 50 11
9 19.4 11 25 44.4
10 19.4 13.9 25 39
Average 14.37 18.85 34.96 29.98

On average, one third of those questioned rated all ten categories of the physiotherapy care they had received as “poor” or “fair”. This might indicate a need for an improvement of treatment in this area of physiotherapy. (May the author stress that further, more detailed studies need to be carried out to investigate the possible reasons for poor patient satisfaction.)

We suspect a lack of information with respect to Post Polio Syndrome, its symptoms and treatment options may exist amongst a high number of physiotherapists. This may be due to the fact that the phenomenon is relatively new and there are not many papers available on the subject itself. We hope this survey serves to raise the awareness of this potential deficit amongst physiotherapists.

Some anecdotal examples

The added comments from those surveyed along with the verbal response from people at the conference was interesting and had to be considered along with the results of the specific questions asked. In some cases there was real anger expressed at the physiotherapy profession by members of the group who on one hand had felt let down and/or insufficiently treated by physiotherapists, and by people who on the other hand had no access to physiotherapy care. Both surveyors had to take time away to calm the passions of some of the group. These people had valuable insights and suggestions to make. We very much appreciated their input and they were assured that we were not offended in any way by their comments. We were, in fact, happy that people could feel free to express emotions that had been on their minds for some time. Therefore the author believes the comments expressed below should be judged in that context by the reader.

Taking some of the points expressed in turn then, we found that many members of the group were of the opinion that they had been assessed from every angle and with every assessment tool known to the profession. However the ratio of treatment to assessment weighed heavily in favour of the latter. While it is acknowledged that assessment tools are a necessary part of the process of physiotherapy, many people have expressed the opinion that they received only assessment and little to no actual treatment of benefit. It is possible that we as physiotherapists could work to improve our knowledge of PPS and its effects on the individual with the aim of increasing the treatment possibilities we can provide.

A number of people expressed confusion regarding physiotherapy and its specialties. One group member was told by a physiotherapist “I am a chartered physiotherapist — what you need is an orthopaedic physiotherapist”. Since then, this person has believed the two are mutually exclusive. Additionally, a great number of comments we received expressed confusion and showed a clear lack of information regarding available physiotherapy treatment.

Some examples that we received written on the returned surveys:

These comments lead to the observation that there may be poor understanding amongst people with PPS of what physiotherapy services are available to them, and what steps they should take to obtain the treatment they need. We feel it would be beneficial to put together some information relating to available physiotherapy treatment and the health services system for this group, so that they may be better equipped to seek proper care.

We suspect a lack of information with respect to Post Polio Syndrome, its symptoms and treatment options exists amongst a number of physiotherapists. We hope this survey serves to raise the awareness of this deficit amongst physiotherapists. There was much hope expressed by the members of the PPSG that this simple survey would create interest amongst the physiotherapy profession regarding the needs of these people.

One last point of note was that a number of members of the group felt they were viewed simply as “polio patients”, and not as people. This may serve as a gentle reminder to us as physiotherapists, and to all healthcare professionals, to look beyond the disorder our patients present with, and to view and treat our patients as people.

In summary, the above comments are not of statistical significance and are purely anecdotal. However they do reflect the general feeling of the group we encountered. We hope we have encouraged the reader to seek more information on the subject of PPS. There is a book available entitled Post Polio Syndrome — Management and Treatment in Primary Care, which we suggest to the reader as a valuable source of such information. We also refer the reader to the PPSG website — www.ppsg.ie

References

(1) Post Polio Syndrome, Management and Treatment in Primary Care, page 3-4. Latham, Foley, Nolan, Meidrum, Fitzgerald, Kinsella, McWeeney, 2007.

(2) Polio — The Late Effects Reality. John R McFarlane, McCON Services, 2004.

(3) Taken from the post polio support group website.

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BOOK REVIEW

CROCODILE TEARS

by Dr. Richard L. Bruno

Welcome to the sweltering summer of 2012, oil is $250 a barrel and Americans can’t afford air conditioning or the gas to drive to the beach.

And what is President Francis X. Slattery doing about this? He’s sweating the loss of the Democratic primaries to the stern, tough-as-nails Wilhelmina “Wild Blue Willie” Edmund, Speaker of the House, former B-2 bomber pilot and Congressional Medal of Honor winner, who is campaigning to end America’s dependence on foreign oil.

President Slattery’s chances of winning the nomination are as low as the stock market until his chief of staff steals a remarkable drug, Lacrimal, that makes men do what most men can’t: Cry. Lacrimal is given to the president to provide him with the female qualities Speaker Edmund lacks, “empathy and sensitivity, tenderness and compassion, that ‘tear in the eye’ the cameras can see when the president is deeply touched by the plight of a fellow American who has to choose between buying gas for his car or buying food for his children.”

Lubricated by Lacrimal, President Slattery weeps his way across the country and starts winning primaries as he secures cheap oil from other countries by creating the “Coalition of the Drilling.” All’s well for America’s “Commander-in-(Handker) Chief” until Lacrimal’s unexpected effects alter the primaries’ outcomes and reveal much darker motivations for the drug’s use, just as the United States must respond with a “nonexistent” stealth bomber to deal with Islamic Saracens holding the vineyards of France hostage with stolen, nuclear-tipped cruise missiles.

So, grab some Kleenex and climb aboard Air Force One for a twisting and turning, crying and laughing ride through pill-popping presidential politics, funky foreign policy and military machinations that would be unbelievable if only our recent experience with politicians didn’t make them not just possible, but likely.

ABOUT THE AUTHOR

Dr. Richard L. Bruno is an advisor to Congress, several federal agencies and director of The Post-Polio Institute at New Jersey’s Englewood Hospital and Medical Center. Bruno’s experience in psychopharmacology began thirty years ago, when he studied antidepressants at New York State Psychiatric Institute. Bruno then developed a novel drug treatment for chronic pain as a fellow at Columbia University’s College of Physicians and Surgeons, where he joined the faculty, and eventually tested a medication to treat chronic fatigue. Crocodile Tears draws on Bruno’s vocations and combines them with two avocations: a childhood love of military aviation and his favorite “sport,” American politics.

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