The Survivor Newsletter: Summer 2005

MEET THE TEAM

A Cead Mile Failte is extended to Eamonn Farrell who joins us in June as Chief Executive of the Post Polio Support Group. Eamonn comes to us from the Department of Defence where most of his time was spent working with the voluntary organisation Civil Defence. In his time with that organisation he has worked all over the country supporting the efforts of the voluntary members which provides community support in many different ways. He particularly recalls the work done by the voluntary members looking after the refugees from Bosnia and feeding the homeless in Dublin in the 1990's. These national activities had a high profile but, as we all know, it is often the small support efforts that are done quietly that are the most important.

Eamonn is looking forward to learning about the Post Polio Support Group and meeting all the members. He is impressed with our work and hopes that he will be able to help in some way working with the members to build on this into the future.

Eamonn is married and is living in Celbridge in Co. Kildare. He has two children and two grandchildren.

And a Cead Mile Failte also to Karen Holmes who joins us at the end of June as Services & Information Officer.

Karen spent the first ten years of her life in Scotland, and after that her family moved to Ssouth Africa for fifteen years. During that time she completed an Honours BA degree with majors in English, Communication and Psychology and worked in Independent Newspapers. She relocated to Dublin around six years ago and worked in publishing. However, psychology and health still fascinated her and she returned to study where she is just about to go into the final year of an honours degree in Psychotherapy and Counselling. She is passionate about equality and empowerment, and for relaxation loves rugby, good wine and reading. We introduced you to Eamonn, Chief Executive, and Karen, Services & Information Officer on Page 1, and now here is Ursula Treacy our Administrative Assistant. Ursula will answer your query when you phone the office, if it is in her remit, otherwise she will redirect you to the relevant person. Ursula has been working for the PPSG for the past six months, and is always a welcoming voice at the other end of the line. She provides invaluable assistance to John McFarlane our Treasurer, in doing the accounts, and is also in charge of the post and correspondance.

And don’t forget, if you want to talk to someone in the PPSG out of hours, you can always phone Joan Bradley at 01 4549237.

Chairperson’s Update

Extra funding put to good use as Chief Executive and Services/Info Officer appointed

OUR BOARD recently discussed the implications of our €300,000 additional funding, and the survey recommendations on future plans and strategic direction for the Group, following which, a Business Plan was drawn up covering the next three years. In January and March of this year we had meetings with officials of the Health Service Executive to discuss and agree the use of this additional funding. In this respect, we set about planning the employment of a Chief Executive Officer and a Services & Information Co-ordinator, both of which we considered were urgently required to forward the work of our Group. Not only regarding planning and administration, but also the expansion of our services, which are necessary for our Group to provide an ongoing efficient and improved overall service to our members. We are extremely pleased that we have now filled both of these positions. Eamon Farrell, our new Chief Executive will be starting with us on the 7th June, after which Karen Holmes, our new Services & Information Co-ordinator, will start on the 27th June. We welcome them both, and look forward to supporting them in forwarding the work of our Group. This will be the main focus of the work of our Board during this year.

Our annual questionnaire, a vital tool in assisting the work of our Group, was well responded to during the year. We cannot stress enough the importance to the work of our Group of returning this questionnaire. The information gathered is not only used in assisting individual members, but also in statistical format, in making a strong case for future ongoing funding from statutory agencies. Our project in compiling all our information into one main database is now complete. This will now greatly assist us in allocating our resources to the members most in need.

Maureen O'Sullivan who has been our Regional Rep in the Southern Region since our Group commenced, is retiring as Rep this year. Maureen, who was one of the founders of the original Cork Polio - now the Cope Foundation, has been of invaluable assistance to us over the years and is due our sincere gratitude for all her hard work for the Group. Thankfully, Maureen is not giving up completely, and will hopefully be piloting a new service for members which we are presently considering. Evelyn Wainwright has now taken up the mantle in the Southern region and we appreciate her support.

Joan Bradley, our Secretary who has also been our Regional Rep in the South Western Area (ERHA) is also retiring as Regional Rep this year. As we have no other Regional Rep in the Eastern region, Joan has really been covering the whole of the region. She is also a member of the South Western Area Co-ordinating committee, and on the Regional Forum and other subcommittees. She is to be congratulated and thanked for the tremendous work she has carried out in this area, and in doing so, has been able to keep our Group informed, from the inside, as to how things are progressing in our area of the Health Sector.

Belinda Redmond from Bray was elected to our Board at the AGM. We welcome her, and look forward to working with her on the Board. I wish to sincerely thank John McFarlane, our Board colleague, for taking over the role of Treasurer at such short notice, after the untimely death of Mary McEvoy, RIP, and at a difficult time in the work of our Group. We are extremely pleased that Tim McEvoy, (Mary's husband) has agreed to join our Fundraising committee, and also to be our Social Support Convener in the Midland Region, taking over from Paddy Fitzpatrick who will continue as our Regional Rep. Our appreciation is due to Caroline O'Kelly for stepping in as Acting Administrator after Anthony departed, and for keeping the wheels turning, along with Ursula, while we are in a period of transition. Caroline will be leaving us on the 10th June and we wish her well and will be keeping in touch, as Caroline has been doing periodic contract work for us for many years.

A few words from the Editor...

JIM COSTELLO

Photo of Jim

Hello everyone,

Summer is here and I don’t know where the days go to. I have a new wheelchair, courtesy of the HSE North West, and my daughter is going to push me in the mini-marathon on bank holiday monday. Thank you to all who sponsored Joan and I, all the monies raised goes to very good use, in providing those items for our members which the HSE does not cover.

I hope you find the main article of interest - 7 Steps to Deal with Chronic Pain - (page 8). I must say I found it full of common sense and sound advice. Also the article on Assistive Technology (page 5) will set you thinking - what is there out there that could help you?

The fundraising committee are working away, what with the marathons (Dublin, Cork and Limerick), and Christmas cards and collections. I hope your coin collection boxes are full - don’t forget to send the proceeds to head office. It is all the pennies (or should I say cent) that count up to considerable sums in the end.

The Book of Memories (page 11) is a lovely idea, please let me know if you would like someone included.

I would encourage you to attend the social meetings if at all possible. It is a good way to meet other people, have a chat with those who have been through it, and have a laugh.

So, sit back and enjoy the read and let me have lots of feedback please.

Paula Lahiff (Editor)

Fundraising Events

THE DUBLIN Flora Women's Mini Marathon, in association with the "Evening Herald", takes place, as we go to press, on 6 June - with PPSG members, family members and friends, an expected 60-70 in total, taking part. The Fundraising Committee wishes to thank most sincerely all those participating in the event on behalf of the PPSG, and all who have already forwarded sponsorship monies and donations, (some anonymous), to the Office. Details on how to send sponsorship monies or donations, (no matter how small), to the PPSG appear in the enclosure, which was issued with a sponsorship card to all members in the middle of May, or you can contact Anne Burns tel. (01) 4534150 email: boyneabu@eircom.net or the Office for the necessary details. Coverage of the day itself will appear in the next Newsletter.

The PPSG will again this year be participating in the "Evening Echo" Cork Women's Mini Marathon on 18 September, 2005, starting at 2.00pm., following a very successful and enjoyable day last year. Details of the event and preparatory exercise regime will appear in the "Wow" Wednesday supplement of the Cork "Evening Echo" for around 8 weeks from the middle of July. For more information contact: Evelyn Wainwright, 8 Charles Daly Rd., Togher, Cork City, tel. /fax (021) 4847313 or by email: evelyn99911@hotmail.com

Not to be outdone by the other major city mini marathons and following on from our first year in 2004 being involved in the "Evening Echo" Limerick Women's Mini Marathon, the PPSG will be taking part once again this year in the event on 9 October, 2005, at 2.00pm., (starting time yet to be confirmed). Information can be had from: Tom Clifford, Cloonfadda, Killaloe, Co. Clare, tel. (087) 2259083, or by email: tomclifford1@eircom.net

The Fundraising Committee would also like to thank all who already sent into the Office the proceeds raised from the PPSG Collection Boxes. You can still send in payment, (no matter how small from the loose change collected in the boxes), by cheque, bank draft, postal order etc. to the PPSG Office.

It is hoped to have cash collections again in Cork, (which have been very successful in the past), at the Douglas Court Shopping Centre on 25 and 26 October, 2005 and at Glanmire Shopping Centre on 28 and 29 October 2005. Any help you, any family members or friends can give with these collections would be much appreciated, details from Evelyn Wainwright.

Christmas Cards will once again be on sale to members and possibly at a few Shopping Centre outlets around the country. Details will be available in the next Newsletter.

Your generosity in the past and your continued support is much appreciated. All funds so raised go directly to the benefit of our members.

Assistive Technology - How the new technologies can assist in everyday life

ANNE BURNS

THE QUESTION is "What is Assistive Technology"? It is anything that makes the job in hand easier to do by the assistance of technology!

It seems incredible but it is less that 25 years ago when IBM launched on an unsuspecting world the product we know as the PC. In that time it has revolutionised the life of millions and opened up brand new horizons for many people with disabilities who use it as a tool for everyday living and enhancing both quality and enjoyment. In many cases it has given people back their independence perhaps for the first time since being stricken by accident or disease.

So how can it help you, those with LEP? We are all finding things more and more difficult to accomplish both through just the natural ageing process but also the extra debilitating effects of LEP. How many times has the doorbell rung and you have had to struggle to get there to discover that your visitor, postman, delivery person has thought you are not at home? Well how about a way of seeing or hearing who is at the door and then being able to remotely unlock it so that they could come in? How about being able to switch on the lights in those winter evenings without ever having to leave the comfort and warmth of that cosy fireside armchair with nothing more exotic than a gismo looking like a TV remote control? What's more it can work the lights in other parts of the house just as easily while you stay put, turn on the electric blanket upstairs remotely so no cold feet or having to struggle with potentially difficult and dangerous hot water bottles.

All these things and a great deal more are possible thanks to the advent of the PC and its spin off developments. As I write this at my desk in my upstairs office I can see who is coming to the door, as soon as the door bell rings a camera puts an image up onto whichever TV or computer screen happens to be on at the time. I can see them, without them seeing me, and speak to them. If it's a friend or relative push a button and the door unlocks and swings open automatically, they come in and the door closes and re-locks. Just think about the additionally security it can give - no cold calling salesperson need ever know you are disabled and potentially vulnerable. You can even use it in an emergency if you collapse or fall to let in the emergency services or helper using a pendant that‘s worn around the neck. But how do you make that call? The same pendant is programmed to dial numbers and issue an emergency message to a list of numbers that you decide.

Then again those heavy gates that looked so good when you put them in, and were a lot fitter. Now you have to struggle to open them and close them, either because of their weight or because you have to go out in the wet to open them in the wheelchair, take the car out and then get the wheelchair back out to close them again. Once again technology, some more affordable than others can come to your assistance.

The only thing that limits the scope of assistive technology is the limitations of the human imagination. New devices are coming onto the market every week. Many have never been generally seen here but they are available and can be brought into Ireland without import tax and VAT from countries outside the EU, as these are devices and technologies specifically designed to assist people with disabilities.

As has been reported elsewhere the PPSG has successfully managed to secure €300,000 of additional ongoing funding from the Department of Health and Children. It is intended that a proportion of this money will go towards the provision, in part or whole, of assistive technology and devices for members - how much is yet to be determined and will in part depend upon demand.

So have a think - what devices, over and above the traditional aids and appliances, could make your life easier, safer and more fulfilled? Perhaps just something that opens doors for you in the house when you approach them in your wheelchair, an intelligent anti scald device for the shower, a different keyboard or mouse for your computer, a voice activated telephone - the list goes on and on!

So have a think and then ring the new Services & Information Co-ordinator, Karen Holmes (after she starts on 27 June 2005) and chat it over with her - and let us see what we can do to help make life just that bit easier. Who says technology has to be complicated?

JOHN McFARLANE

Around the Regions ...

CORK GROUP

Convenor: Evelyn Wainwright
Tel/Fax: 021 4847313
Mobile: 086 8829267
Email:evelyn99911@hotmail.com
Venue: Vienna Woods Hotel
Area: Cork (City and County) and Kerry
Meetings: Meets first Wednesday of every second month.
Meeting Dates:
13th July 2005
17th Sept (Regional Meeting)
30th November 2005
11th January 2006
8th March 2006.
In July the Cork Group is planning to have an outing, to be discussed at their next meeting, and later in the year another speaker to talk on Physiotherapy. Their plan for the Christmas outing 2005 is to go to the dogs (dog track) and they hope to book a suite as this is much better for their group with table service, private bar and helpful staff.
If you live in this area and would like to attend these social meetings, please give Evelyn a call.

MULLINGAR / ATHLONE GROUP

Convenor: Sean Mulligan
Mobile: 087 2053821
Venue: Creggan Court Hotel (except for our annual dinner, which will be held in Athlone Rugby Club)
Area: Westmeath, Roscommon
Next Meeting: Meets twice yearly.
Meeting Dates:
9th September 2005 (Annual Dinner)
10th March 2006
In September the Athlone/Mullingar Group is planning to have their annual dinner at The Bounty Restaurant, Athlone Rugby Club, Coosan, Athlone. It is hoped that all members in this area will be able to attend this social evening, details later. Their meeting in march 2006 will be an information and social event at the Creggan Court Hotel.
If you live in this area and would like to attend these social meetings, please give Sean a call.

BRAY GROUP

Convenor: Belinda Redmond
Tel/Fax: 01 2860251
Email: redmond286@eircom.net
Venue: Esplanade Hotel, Bray.
Areas: North Wicklow, South Dublin.
Meetings: Meets first Tuesday of every month from March to October.
Meeting Dates:
7th June 2005
5th July 2005
2nd August 2005
6th September 2005
4th October 2005
7th March 2006
4th April 2006
If you live in this area and would like to attend these social meetings, please give Belinda a call.

LIMERICK GROUP

Convenor: Tom Clifford
Tel: 061 375115
Email: tomclifford1@eircom.net
Venue: Kilmurray Lodge Hotel, Limerick. (September meeting will be in Ennis - venue to be advised)
Areas: Limerick; Clare; N. Tipperary
Meetings: Meets the first Wednesday of every second month from March to September.
Meeting Dates:
6th July 2005
7th September 2005
1st March 2006
The Limerick group are planning their Christmas Party, details to be announced.
If you live in this area and would like to attend these social meetings, please give Tom a call.

GALWAY GROUP

Convenor: Bridie McMahon
Tel: 094 9540285
Mobile: 087 9580567
Email: sbmcmahon70@eircom.net
Venue: Menlo Park Hotel, Galway
Meetings: Meets on the first Wednesday of every second month from March to September
Meeting Dates:
6th July 2005
7th September
1st March
The Galway group is planning their Christmas Party for a night at the dog track, details to be announced.
If you live in this area and would like to attend these social meetings, please give Bridie a call.

ENNISCORTHY GROUP

Convenor: Ann O’Kelly Guerin
Tel: 053 32633
Email: aguerin914@hotmail.com
Venue: Riverside Hotel, Enniscorthy
Areas: South Wicklow, Wexford, Waterford.
Meetings: First Monday of every month (with the exception of June, which has been changed to first Tuesday because of the Bank Holiday).
Meeting Dates:
7th June
4th July
2nd August
5th September
3rd October
7th November
5th December
If you live in this area and would like to attend these social meetings, please give Ann a call.

LETTERKENNY GROUP

Convenor: John Mangan
Tel: 074 9137465
Venue: Clanree Hotel, Letterkenny
Area: Donegal, Derry
Meetings: Meets twice yearly.
Meeting Dates: To be advised
If you live in this area and would like to attend these social meetings, please give John a call.

PORTLAOISE GROUP

Convenor: Tim McEvoy
Tel: 0502 27204
Mobile: 087 4169372
Venue: Heritage Hotel, Portlaoise
Areas: Offaly, Laois, Kilkenny.
Meetings: First Tuesday of every second month
Meeting Dates:
5th July,
6th September,
1st November
If you live in this area and would like to attend these social meetings, please give Tim a call.

NEWBRIDGE GROUP

Convenor: Paddy Moyles
Tel: 059 9141283
Venue: The Keadeen Hotel, Newbridge
Areas: Carlow Kildare.
Meetings: Meets quarterly.
Meeting Dates: To be advised
If you live in this area and would like to attend these social meetings, please give Paddy a call.

MURDER MYSTERY WEEK-END REPORT

TWENTY THREE members and their spouses/partners/friends attended this weekend from the West and North West regions. It was held in Hotel Westport, which was very accessible having six bedrooms with disabled facilities. The staff were courteous and helpful in an unobtrusive way. The Leisure Centre had one changing room with a disabled facility and the pool was accessible with steps and a handrail. There was a sauna, steam room and zacussi and hydrotherapy jets within the pool

The Murder Mystery event was good fun and everyone entered into the spirit of the occasion. This took place (led by a group from the Westport Dramatic Society) after a buffet supper on Friday evening, on Saturday morning between 11.30 and 12.30. and again after a fancy dress dinner on Saturday evening. The names of all those who guessed the murderer were put into a hat and the winner (not from our group) got a week-end for two people at the hotel. The fancy dress was good fun, and 'Elvis' 'Tina Turner' and a candidate for the Papacy turned up! The photos say it all!

Saturday afternoon was free and everyone did their own thing, with some taking a trip to Mulranny to see the new hotel there, others to Tourmakeady to feed Tom O'Malley's cattle, and the rest went for a walk around the town and put a bet on the race (we had a few winners), went for a swim, or had their massage and just relaxed.

After the dinner on Saturday night, our group found a quiet corner (away from the disco) and had our own session, with Tom on the violin, Bridie on the Irish dancing, and Brian leading the singing! A night to remember!

Everyone went their own way after breakfast on Sunday morning. Generally speaking it was a very successful week-end.

7 Steps to Deal with Chronic Pain

Meg Daly Dip COT MNZAOT
Occupational Therapist

MOST POST Polio Syndrome folk know all about pain. Like many other sufferers (and I'm sorry but there isn't a PC word for sufferer when chronic pain is the issue), the daily battle with the enemy takes on a life of its own and becomes the focus of their life. Yet for each person, no matter what the source of chronic pain, their personal pain experience is unique and is understood and appreciated fully only by that person. Pain and the emotional consequence of pain which is suffering, can be influenced by many things including personality type, coping strategies, work and home environments, supportive networks or lack thereof and core belief systems.

Chronic pain cannot be seen or felt or measured by anyone else except the person experiencing the pain. Assessment of pain because of its very personal nature can only be done by self report. Those of you who have attended pain clinics will know all about colouring in the famous nude man 'Pain Picture', the Pain Intensity Check List, the Personal Beliefs about Pain tests etc etc.

For those of us who are fortunate enough not to have chronic pain but who wish to offer assistance, such assessments allow us a glimpse into a state of being which we can only guess at. The descriptors of pain are usually fairly graphic!. How about this lovely list given to me by an imaginative client who delighted in describing his neurological back pain in Technicolor:

Progressive; Needle pricks; Burning; Feels hot, but also patches of icy cold; Drilling;Unrelenting; Pins and needles; Punch followed by a burn; Dull throb; Overwhelming; Cork screwing - slowly progressing down the legs; Burrowing; Stabbing; Knotted.

Ouch ouch. Well then, how can we learn to cope with chronic pain? What do the experts say? Chronic Pain is pain of a persistent duration of not less but usually more than three months. This type of pain doesn't actually tell us the truth about what is going on in our bodies. Acute pain is a warning signal that something is wrong in or on our bodies and we ought to do something about it pronto. Acute pain does not persist and actually wears off as the pain signals lose their puff usually long before healing is complete. Chronic pain persists beyond healing. There is nothing physically wrong with the area from which the pain seems to be arising. It is usually due to damaged scrambled nerves going into overdrive and the normal over riding or modulation of pain messages not occurring because of a breakdown in the relay system between the site of nociception and the pain receptors in the brain.

When the doctor says the pain is in your head don't take offence - he's actually right. Pain is indeed 'perceived' in the brain but the good thing about this understanding of pain is that more and more evidence is now pointing to the fact that the chronic pain experience can also be controlled by the brain. In 1965 Dr Melzack described The Gate Control Theory of pain which in brief suggested that the perception of pain was influenced by psychological factors such as mood and anxiety. Depending on the psychological status of the person, pain could be modulated in the spinal cord with a 'gate' opening and closing the pathway accordingly.

The experience of chronic pain tends to be all encompassing, demoralizing, blocking out everything else and interfering with quality of life, work, self esteem and relationships. It can cause serious depression, withdrawal and misery. Those suffering from chronic pain frequently become passive and give treatment control away to their doctor, their naturopath or whoever. This is described as having an External Locus of Control. But in order to truly control pain, the sufferer must own it and take responsibility for it. This is known as having an 'Internal Locus of Control' and is a whole lot more preferable in terms of psychological wellness. Chronic Pain doesn't deserve to have such power. Pain is a beast that must be TAMED. You must learn to control it. It must never ever control you.

STEP 1: GET TO KNOW YOUR PAIN

By this I mean really get on first name terms with the beast. Your pain is not you. It is a separate entity with characteristics which ebb and flow during the day. Keep a detailed pain diary for a few days and become much more acutely aware of your pain. Give it a form, a colour, a shape, describe it in words, make an analogy or a comparison and note the triggers that make it worse and the things you do that reduce it. Then read back and note patterns and the thoughts this exercise provoked.

You need to understand the difference between acute and chronic pain. Acute pain such as a sprained wrists tells you - don't move me until such time as I am better, put me in a wrist brace, don't make me lift. Chronic pain is not telling you that. It thinks it is but your pain is not as the result of an injury that can be fixed, it is caused by faulty or damaged nerve messages which are so sensitized that even a light touch or tickle can be perceived as pain. Holding yourself or the part of the body from which the pain emanates in a stiff protective way simply increases the tension and the pain messages which thrive on the tense high tone muscle just love it when you do that. Pain 1, you Nil. A side effect of protective postures is that you will lose strength, range of movement and your joints could contract. Avoid stiffness at all costs be it through gentle exercise, hot baths, massages, Tai Chi, swimming - whatever takes your fancy. Do what you can to keep mobile and active. Understand and believe that you can relax and work through your pain because it is telling you lies.

STEP 2: GET A GURU

No, lets not go back to the 60s although most of you PPS people are probably teenagers of the 60s so you know what I'm talking about. When it comes to pain you really need to find a therapist or mentor who is prepared to listen to your moans and groans on a regular - say two weekly basis. Don't compromise yourself socially by unloading your grief onto every unsuspecting ear that comes your way thus frightening people away. Sorry but that's the best way to lose friends and that goes for family members too. Try to find and if necessary pay for one person who is genuinely interested in how things are going, who is encouraging when things look good but who doesn't get overwhelmed with the intensity of the emotions that you might sometimes show when the effect of your pain seeps into your very soul. A person who can hold your hand, shake their heads and say empathetically - 'Goddamit, it must be absolutely awful for you' - and leave it at that. Sometimes someone to really listen and hear what you say is all you need.

STEP 3: TAKE THE MEDICINE

Some people have a problem with taking pain killers or the more aggressive or controversial types of medication such a Methodone or full on Morphine. This might stem from a personal belief that taking pain killers is a cop out or they have a fear (often genuinely based,) that the side effects outweigh the benefits or that a dependence or addiction might result. Get real! Persist with your doctor to find a pharmaceutical pain modifying regime that works for you. Put up with a few failed attempts if you have to but don't give up the search. There will be something there for you. Take the meds or have the nerve blocks, you need them and you deserve them. Your friends and family will certainly appreciate the peace and quite too..

STEP 4: LEARN RELAXATION

Okay, lets not get too excited here. This is common sense new age stuff and not necessarily a relic from our beloved but now aging 60s hippies' vision of life. Pain is a neurological experience. Polio is a neurological disease. You've got to appreciate the connection that exists between who you are and the way you cope with pain. If you are a tense stressed out person your pain becomes INTENSE. If you are relaxed, the pain pathways to your brain cannot function as well. Remember the Gate Control theory? If at any given moment during the day you stop and measure your level of tension in your body, I can just about guarantee that you will be able to stop and flop and let go of some muscle tension especially in your face and shoulders. That tells me that you have been carrying about a great deal of tightness in the muscles of your body for hours and hours. What does this mean? A gradual build up of pain of course! The pain pathways just love tension, they hate relaxed people - the pain can't get a hold. Find a night course, buy the CDs and the books, get the incense and the candles and get relaxing. Once you've mastered it and know how good it feels, learn to incorporate mini relaxations into your day. Remember muscle tension must go.

STEP 5: LEARN TO BREATHE

Closely linked with relaxation is deep meditative breathing which you can learn through Yoga and Meditation. This is hugely important with regard to pain control. I cannot emphasis it enough. The power of meditative breathing is tremendous and is totally unappreciated by the population at large. The brain must deal with masses of incoming information at any one time. Focusing on breathing deeply and rhythmically can alter the brain's perception of peripheral sensations. By this I simply mean if the brain is absorbed completely in the task of breathing deeply and relaxing on the out-breath, pain cannot, by definition, be felt. If pain is being felt it is because you are paying attention to it. Pay attention to the sensation of breathing deeply and let all other thoughts and sensations drift on by without paying them any regard. This skill takes time to develop but regular practice and by that I mean daily practice can actually physically change the connections of the brain and it gets easier and easier to shut out the pain sensation. Don't forget pain can't get a decent grip on a relaxed person. Now you know why birthing mothers are taught breathing and relaxation - to lessen the pain.

STEP 6: DISTRACTION

Going back to the premise that the brain can only cope efficiently with one thing at any one time (multitasking is not an efficient use of concentration and brain power by the way), we can understand the value of distraction when it comes to coping with pain. How many among you have lost all track of time when doing something you are really absorbed in such as painting a picture, doing a tricky piece of embroidery or knitting, fixing a car engine, reading a spicy novel, inventing a better mouse trap - whatever your personal preference or hobby is, use it to distract you from the experience of pain. If pain gets bad most people will go to bed where they lie in darkness and focus completely on how awful the pain is. It is better to say to yourself - I'll just concentrate on this activity which I really enjoy for 30 minutes and then if I really need to I'll go to bed but only for 30 minutes and then I'll get up again.

STEP 7: CHANGE YOUR WAY OF THINKING

Cognitive Behavioural Therapy is a treatment method which aims to help people change how they respond to feelings. As an example let's say there are three people running to the bus stop but just miss the bus. One feels angry and kicks the bus stop, one feels guilty and worried and starts biting his nails and one feels happy and starts to whistle yet the same thing has happened to all three. Why the different responses?. Feelings arise from thoughts. The chap who kicked the bus stop feels angry because he hates having to take the bus, he thinks all bus drivers are useless and life isn't fair especially to him. The chap who feels guilty thinks it is his fault that everyone else has missed the bus because he is an unlucky person and everything always goes wrong when he is around. The whistling lad thinks what a stroke of luck! Now he can chat up the gorgeous girl who works in the cafe while waiting for the next bus! Different thoughts = different feelings.

If you are experiencing strong emotional feelings about your pain, stop and ask yourself 'what are the thoughts leading to those feelings? Am I depressed because I think I'm going to die? Am I anxious because I think I'm no good to anyone anymore?' Examine what thoughts are leading to your negative feelings and write them down so you can see them on paper. Then challenge the validity of those thoughts and beliefs. How true are they really? Chronic pain does not mean that you have a terminal illness. Nobody dies of chronic pain because it isn't a disease - it is a symptom of a condition. Are you really useless? Is there honestly absolutely nothing you can do? Does everyone really hate you because of your pain? And on you go, rationally challenging the neverending loop of negative thoughts which are often so ingrained in your psyche, that you do believe them even though they are not 100% true. Then reframe those thoughts in a more rational and realistic way and note how you feel as a result. Once again you will probably need professional guidance with this learning to manipulate your thinking patterns. This is the essence of cognitive behavioural therapy. Change your attitudes and change how you feel.

Pain is not your friend as some people would have you believe and so why not try out some of these ideas if they are new to you but don't stop here. I've just given you a taster. Learn as much as you can about pain, become an expert not a prisoner, read books from the library, attend seminars, go for a residential pain management training if you can find one. Use what is out there and learn from each other!

Put Chronic Pain in its place - and that should be way down the list of your priorities!

Meg Daly’s email address is lee_daly@ihug.co.nz

MARY McEVOY REMEMBERED

Mary McEvoy 1952 - 2005.

MARY JOINED the committee of the Post Polio Support Group in 1996 and acted as Treasurer from that point onwards. Her sudden death shocked us all. She carried out her work as an officer of the Group with diligence, care and compassion. Her previous experience in finance in Rehab, Portlaoise, was especially valuable to us, in the setting up of seamless and accountable methods of recording our finances.

As the PPSG regional representative for the midlands region, she spent time and energy talking to members on the phone and sometimes visiting polio survivors in her area.

Mary was, of course, a polio survivor, a challenge for any human being, but that was not the only challenge she faced in life. At a young age her mother died leaving a pre- teen sister in need of some care and guidance. This roll she accepted and carried out with love and attention.

Mary also gave consistent help to her mother-in-law who lived in adjoining accommodation. She tells us that Mary was always helpful and kind, no matter what chore she required assistance with.

As wife of Tim she always took a keen interest in his work and helped out by fund raising, both for charities that he promoted and for the local Hospice. She never sought any prominence for herself but willingly helped many relatives, neighbours and friends in trouble. Indeed, because of her unassuming attitude we may never know the extent of the work carried out by Mary.

Our deepest sympathy is extended, particularly to her husband Tim, and also to all that knew and loved her. May she rest in peace.

JOAN BRADLEY

POST POLIO SUPPORT GROUP BOOK OF MEMORIES

We on the Board wanted to find a way in which we could commemerate our members who have died, and to this end have bought a beautiful leather bound and embossed BOOK OF MEMORIES in which we would like to inscribe the names, dates and a few words in memory of our deceased members. This Memorial Book will be on display at each AGM. If you would like to remember a deceased family member or friend in this way, please let us know and we will be delighted include them in this beautiful book.

CLAIM BACK YOUR TAX

It is worth remembering that devices, technologies, aids & appliances purchased and categorised for the use of people with disabilities can be declared as a legitimate expenses on the Med. 1 Form and claimed back in proportion under the Revenue Commissioner's Income Tax Regulations. VAT can also be claimed back from the above items on Form 61A (include receipt), which can be obtained from Revenue Commisioners, Kilrush Road, Ennis, Co. Clare. Details are available from the Revenue Commissioner's web site www.revenue.ie, your local tax office or via the PPSG's Treasurer who can be contacted either through the office or e-mailed at mcconservices@iolfree.ie.

AA BREAKDOWN SERVICE FOR PEOPLE WITH DISABILITIES

If you are a disabled driver, and have a breakdown on the road, the AA will come to your assistance free of charge. So take down their lo-call number 1850 456789 and keep it in the car. I have had occasion to avail of this service recently and they were with me within 20 minutes and had me up and running again in no time! Thank you AA

SHOPMOBILITY IN CORK

Shopmobility, as well as being available in the Liffey Valley Shopping Centre, is now also available in the Mahon Shopping Centre in Cork and will soon be up and running in the Dundrum Town Centre. This is a truly great service for people with disabilities. After initial registration, you just go into the office on site, show your card, and you get to do your shopping in comfort in a motorised buggy. There is no charge for this service, but everyone is requested to support their Christmas Raffle. Well done all at the Disabled Drivers Association!

LETTERS TO THE EDITOR

Dear Paula

Pauline and I would like to thank all of those we met at the AGM for their welcome and kindness shown to us over the weekend, It was the first talk of this nature we had given and we were a little nervous to say the least. The friendly nature of the audience helped calm the nerves and it was not long before we were just talking to like minded people who it seemed as though we had known for ages.

We mentioned a motor caravan that has been built for wheelchair users. The importers are:- Nirvana Tours, The Old Mill, Court Farm, Pilgrims Road, Upper Halling, Rochester, Kent ME2 1HR Telephone number 0800 328 1475 www.nirvanarvtours.com. They are a hire company

The dealer is Don Amott Caravans Ltd, Hilton, Derby. DE65 5FJ Telephone number 0845 4560582 www.donamott.com. The van is called The Elnagh CPT

Best wishes to you all
Robin & Pauline Butler

Dear Paula

Many thanks for inviting us to speak at your AGM - and for your kind hospitality on the day. It was a great pleasure to meet so many of your supporters and beneficiaries and to hear about the work of your committee and the PPSG.

We would be delighted to try and assist anyone who contacts us when they are looking for suitable holiday accommodation in the UK or elsewhere. Yours sincerely

BRIAN SEAMAN
www.tourismforall.org.uk
info@holidaycare.org

The PPSG is now a member of TOURISMFORALL, and if you are planning a holiday, they will give you information on accessible accommodation, accessible transport, activity holidays for people with disabilities, respite care establishments, and accessible overseas destinations. Working with independent hotels and many major groups in the UK, TOURISMFORALL is able to meet most holiday needs. EDITOR

PLEASE remember the Post Polio Support Group in your Will, or request donations to Post Polio Support Group in liew of funeral flowers ...

All bequests will be put to very good use.
THANK YOU

Membership of the Post Polio Support Group is only €10 per year. If you would like more information about the group please contact Head Office at the phone number above.