AGM and Conference 2008

In times gone by the cry was “Go West Young Man”, well we were before PC days! So who could resist the cry from Paula Lahiff and her organizing Committee to go to Sligo in the spring?

The Radisson SAS Hotel at Rosses Point was the venue of the 2008 Annual Conference and AGM, as well as the unique event named “Creativity and Us”. The event was so well attended that overspill rooms had to be booked in the nearby Clarion, so all could be suitably accommodated.

A bright spring morning saw the delegates gather to be welcomed to Sligo by the City Mayor, Cllr Jonathan McGoldrick. The conference was formally opened by the Mr Jimmy Devins TD, the then Minister of State at the Department of Health and Children and Deputy for Sligo. He spoke warmly of the achievements of the Group and welcomed the initiatives it had taken on behalf of Polio Survivors in areas as diverse as social support and peer counselling through to the sponsorship of research into fatigue. He added that the Government was firmly committed to ensuring that people with disabilities were able to avail of all the services needed, medically and socially, to enable them to enjoy quality of life dignity and independence.

The Chairman of the Post Polio Support Group, M3r. Hugh Hamilton, then welcomed the visitors from the Northern Ireland Polio Fellowship and the Chief Executive of the British Polio Fellowship, Mr. Graham Bell. The first presentation by the Group’s Chief Executive, Mr. Eamonn Farrell, reported on the progress of Plan 2010 that was rolled out last year and tackles the development and direction of the Group over the next 2 ½ years. A copy of Plan 2010 had been sent to very PPSG member in 2007 and Eamonn emphasized the importance it had to the well being of members and how it could be used to help deliver better and faster services. It’s implementation also allows the Group to maintain pressure on statutory bodies to deliver according to the needs of Polio Survivors.

The next two speakers were introduced to the conference by Ciaran Nicholson chairing a session that looked at two areas of particular relevance to Polio Survivors.

An ongoing commitment of the Group has been in the sponsorship of research into the medical problems faced by those with Post Polio Syndrome. Over the past number a years a small dedicated group, Deirdre Murray, Dara Meldrum (RCSI), Ronan Conroy (RCSI) and Prof. Orla Hardiman (Beaumont Hospital) has benefited from PPSG research grants. On their behalf Deidre Murray presented the results of their research project from 2005 - 2007 entitled ‘An Investigation of Subjective and Motor Fatigue in Prior-Polio Patients and the relationship with the Energy Cost of Walking’. An abstract of the presentation is reproduced here:

“Fatigue, problems walking, weakness and pain are recognised as common problems among polio survivors. This project aimed to investigate these symptoms and relationships that may exist between them.

30 Polio Survivors were compared with 30 people of the same age (controls) with no history of a neurological condition. Each volunteer attended for assessment in Beaumont Hospital. Ethical approval was granted by the Beaumont Ethics Board.

Assessment included an energy cost of walking assessment, measuring effort of walking; subjective fatigue and quality of life measured using questionnaires, mobility and pain. Quantitative Muscle Assessment (QMA), measuring muscle strength and muscle fatigue was completed.

Results showed that Polio survivors had a higher body mass index with 36.7% classified as obese compared with 13.3% of controls. Polio Survivors reported more pain with a greater pain severity than controls. The legs, followed by spine and upper limb were the main pain locations. Activity was the most commonly reported pain-aggravating factor.

QMA scores showed that Polio survivors were significantly weaker than controls but there was no difference in muscle fatigue of legs found. 93% of Polio Survivors compared with 13% controls reported subjective fatigue. Mobility of Polio Survivors was worse across all measures with walking speeds 55% that of the controls. 80% of Polio survivors used a mobility appliance. Energy Cost of Walking was more than 2 times greater in Polio survivors, who showed a much bigger increase in heart rate to walk at a comfortable speed.

Investigation of relationships between the measures showed that pain influenced subjective fatigue. Elevated Energy Cost of Walking, which was influenced by pain and leg strength, had a negative impact on the Physical Component of Quality of Life. Findings emphasise the importance of minimising pain, maintaining strength and maximizing the efficiency of walking in Polio Survivors.

The proposed continuation of the Project involves investigating whether exercise can help decrease energy cost of walking and maybe help control weight”.

To assist in the research continuation Deidre invited delegates to complete a Questionnaire that will be used to guide further research.

A subject close to many a Polio Survivors heart, or rather legs in most cases, whether there are better orthotics on the market. David Allen, personally known to many as the Chief Orthotist and Clinical Director of IDS Ltd, based at the Cappagh Hospital in Dublin tackled the subject.

He posed the question often asked by Polio Survivors to their orthotist “Are there any new or better orthoses (callipers and braces) available nowadays”.

In answer he stated “This seemingly simple question does not have a simple answer. The reason for this is that all orthotic clients are individuals, with individual requirements, capabilities and aspirations. What may be a useful development for one client may be completely inappropriate for another. Even where it is possible to identify a possible match between a client and a new product it is virtually impossible to forecast if the outcome would be positive. It has been my experience on several occasions that seemingly very similar cases have resulted in totally different outcomes.

One client had a change from a conventional calliper, i.e. leather and steel, to a contemporary plastic design. She found this to be a huge success, with very few disadvantages. However, she was rather annoyed that such a design had been available for some decades and was frustrated that she had not reaped the benefits many years before. Another client who presented with much the same clinical condition and who had a similar change found the new orthosis to be totally unacceptable, mainly because it was just so different.

This can lead to a big problem – if a client is dissatisfied with a new orthosis, who is to pay for replacing the orthosis with the original design? There is currently no process within the HSE funding system for this and if the orthosis is not accepted by the client the HSE is very unlikely to pay for it at all, no matter how much work the orthotist has already done. This is only one of several funding issues which need to be addressed.

To be specific about new developments – they are mainly in the areas of components and materials. Some orthotic knee joints are now available with improved safety or stability functions and some new materials are lighter and more rigid. However, the overriding issue remains suitability for individual clients needs”. He ended by advising delegates “If you are interested in investigating new developments you should contact your orthotist to discuss this”.

Although it was not possible for the speakers to answer questions on individual cases delegates asked a series of queries many of which addressed areas regarding ethics and availability of on a range of treatments and aids and appliances in the public and private sectors. Lunch called a halt to the session but both Deidre and David stayed on to talk to individuals on a private basis for some considerable time.

Delegates regrouped in the afternoon for the formal part of the day, the Annual General Meeting of the Post Polio Support Group, where they were addressed by the Chairman and Officers of the Group and received the Annual Accounts. These were adopted, and resolutions regarding the re-appointment of the Auditors and four of the Directors were taken and passed unanimously.

Then came “A Very Special Performance”, in fact so special that the organizers had kept it a closely guarded secret. Everybody was intrigued when, as it turned out, four local amateur actors took up centre stage. Firstly they related and recalled statements that the audience quickly recognized as telling the stories of Polio Survivors, their experiences, heartaches and triumphs. The actors then took on separate roles in a specially written play, one couple taking the part of a male Polio Survivor and his wife, the other their son and his wife returning from Australia to discover the father has Post Polio Syndrome and is not coping with life and driving his wife demented by inaction over his condition and refusing to change his life or surroundings. Told with great humour and sensitivity it looked at what could be done to improve the parents’ lives, simple things like moving a rug that the father fell over. Getting in touch with “some Group called the Post Polio Support Group” and asking for advice. Soon the audience were in fits of laughter as they recognized themselves and their own kin in the words and actions of the actors. To say the audience was rolling in the aisles may be a little extreme but they were certainly rocking with laughter both at the performance, and perhaps more importantly themselves. One line that struck home hard effectively said that although you can not take it with you and you want to leave something behind you when you depart this mortal coil, most of our relatives would prefer us to have the things we need to enjoy our lives now, it is all about quality not necessarily quantity.

All too soon the performance ended, it is to be hoped that perhaps it can be recorded so all can enjoy the warmth and sincerity of those Sligo actors and the enjoyment they brought to all.

The evening saw a dinner where 185 sat down to a sumptuous three course meal with old and new friends. Many were surprised when the big drop down TV screens came into view. Paula had one last surprise up her sleeve. Before many had even enjoyed their breakfast she had been interviewed with Evelyn Wainwright for RTE News, and it had appeared as the third item on the 6.01 News. Although it was bounced down the running order by other fresher items, and was late because of the football, Paula appeared on the screens to deliver a plea that the Government and HSE deliver the services that Polio Survivors need now. It was met by embarrassment by Paula and rapturous applause from everyone else.

Then the fun began started by a bumper raffle and a Ceilidh that went on late into the night, or rather the early hours of the next morning. A job well done and enjoyed by all.

Overhead on the weekend
(1) 'I've got my women all mixed up!'
(Hope he got them sorted out by nightfall)

(2) 'I couldn't get my legs into bed, I had to get help!'
(It was not caused by post polio syndrome!)

View Photos of the AGM and Conference