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The Survivor Newsletter: Autumn 2003

Chairperson’s update ...

At last, weatherwise we had a good summer. I do hope that most of our members were able to enjoy it and get a break or holiday.

I am only now beginning to realise how vital it was for our Group to have a full-time Administrator, especially, since I have not been that well myself over the past 12 months. I am now relieved of the day-to-day work of the Group and Joan is also gradually getting to a similar position. This gives us more time to ‘stand back’ and look at the overall work of the Group, and in doing this, to plan for the future. Of course we, along with the other board members, are in regular if not daily touch with Anthony, and are on hand to attend meetings, subcommittees, etc. and to assist with any other matters that Anthony has not time to deal with.

As our Group has grown, naturally, the administration of our work has also grown. The Health Boards, all ten of them, are obsessed with ‘paper’— Service Agreements, Performance Indicators, Staff Census Forms, Activity Reports etc., and we are constantly making the point that, for a small group like us, this obsession greatly impedes us in trying to carry out the work our Group was formed to do as, unlike the Health Boards, we do not have a multitude of office personnel. Hopefully, when the new Government Health Reform Programme is up and running, some of these problems for groups like ours may have been resolved. We are certainly making the case, in every forum possible, including attending DOH meetings, to bring this about.

Following Joan, Hugh and I attending a one-day course on Board Governance, at our June Board Meeting, we decided that it was time that we carried out a complete review of our Board, and its subcommittees. This work will take some considerable time and we will update you again in early 2004.

Our Survey project is proceeding well, after some hitches along the way. Anthony has assumed day to day responsibility for the project and one of our members, John McFarlane, has produced several drafts of the report, which should shortly go to the designers and printers. We are extremely grateful to John for his time and assistance with this project. We anticipate launching the report in January 2004, presuming that everything goes to plan in the meantime. This will be an extremely important report with regard to the future work and role of our Group and also with regard to the Government’s planning of services for Polio Survivors.

Recently, one of our members, Belinda Redmond from Bray, organised a social gathering in a hotel in her area. Early results from our survey indicate that members in many areas throughout the country would welcome these type of events. We would encourage and give support to any members who are prepared to organise similar gatherings. Well done Belinda! (Report on Page 4) .

A special thanks is due to our member Noreen Bruen and her helpers for organising our Group’s recent participation in the Ladies Cork Marathon. We had nine entrants this year and would hope to build on that over the coming years. Well done to all the participants! Also, ‘The Cork Week-end’ took place on the week-end 26-27th September. Many thanks to Maureen for organising this. Paula represented the Board and Anthony, Barbara and Christina also travelled to Cork for the week-end.. See report on back page.

I would especially appeal to our members, their families, neighbours and friends, if possible, to try to assist our hard-working fundraising committee by volunteering to help with the sale of our Christmas Cards this year. As you will see in this newsletter, they are being sold in many areas throughout the country, and the income derived from this is of great assistance to our work.

Jim - Chairperson

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From the Editor ….

Well, hello again members. Autumn is here, the blackberries were huge this year, and I made my annual blackberry tart - which brings me back to my childhood, although in those days you did not have to worry about not picking the berries too near the road because of exhaust fumes, nor not picking the ones too near the ground because of Weil’s Disease! Our newsletter is packed with juicy Autumn items too, an interesting article on Peer Counselling, a follow-up on Jackie’s holiday, a lovely memory of Lady Valerie Goulding, RIP, funding news, Survey news, regional news, and much more!

There are two inserts, one an order form for your Christmas cards, and the other a timetable of venues where our cards will be on sale this Christmas. The Fund-raising Committee are looking for your help to sell our Christmas cards this year and make this fund-raising effort a huge success!

I hope the article on page 9 will encourage to write your stories, so please send me anything you would like to share with our members and I will do my best to include it. Have a good read!

Paula Lahiff (Editor)

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Valerie, Lady Goulding …

I was saddened to learn of the recent death of Lady Valerie Goulding, RIP. and it brought to mind my sojourn in the Central Remedial Clinic, then in Goatstown, from 1954-1956. I always found her a charming lady in the best sense of that word and she befriended me at a time when I was a lonely teenager in Dublin. I have many happy memories of my time there and am indebted to the staff, led by Kathleen O’Rourke, RIP and the Consultant Surgeon, John Boyd Dunlop for actually getting me “back on my feet”. It took nearly two years for me to “graduate with honours” from the clinic! During this time I became extremely agile at “walking” with my arms across parallel bars, perched at least four feet in the air and when I became tired I had to sit on one of the bars. My arms became very strong and perhaps I used the “monkey” in me to good effect. I also became a fairly good swimmer as a result of going to Tara Street Baths once a week; not for a bath I hasten to add!

Lady Goulding and Kathleen O’Rourke who co-founded the Clinic, were wonderful pioneers and each of them stamped there own sterling qualities on what the CRC has become today. I remember when I took “my first steps”. Lady Valerie and Kathleen O’Rourke were there to cheer me on. There was also a big occasion on which I had to fall without hurting myself. I was supposed to throw my arms out and fall on a large rubber mat. I stood rooted to the spot and finally had to get” a push in the back” (in the best GAA style) in order to fall for the first time. After that I became the expert at showing fellow patients how to fall properly. One demonstration took place some time after I left the Clinic. I was showing a 29 year old how to fall on the road outside the Clinic. He observed my “antics” and asked me what age I was. I said “nineteen”. “That explains it” he said, “You’re a bloody lunatic”. I hope he never hurt himself.

The Clinic was a very happy place and didn’t lend itself to helping one feel sorry for oneself. You were there to become as mobile as possible and when you did so, you moved on, hopefully into further education and employment. In this respect, Lady Goulding was ahead of her time and even though I was absent from college for two years, she arranged an interview for me with her husband Sir Basil Goulding, Chairman of W & HM Goulding Ltd., who were about to open a fertiliser factory in Sligo, my home town. He received me with great courtesy and promised that when I qualified from Commercial College the firm would consider me for employment. I didn’t ever work in Gouldings, but Lady Valerie was certainly the catalyst in my getting my first job in which I stayed for seventeen years, before moving into the Public Service. She was always interested in my future career. In 1959 I went back to Dublin to help with a few flag days for the Clinic and she was so pleased that she had my photo taken with Sean Lemass, who had just taken over from De Valera as Taoiseach. He was shown putting a half crown into my collection box.

Ireland owes Lady Goulding and Kathleen O’Rourke an enormous debt for the manner in which they tackled the Polio Crisis in the 50’s and 60’s. I recall both of them carrying me - “fireman’s lift” - from the Clinic’s three-wheeled van to my “digs” in Goatstown. She was also very conscious of the social aspect and making us feel athome among the “Dubs”, who were very hospitable to us “culchies”. Arms were often twisted to get tickets to international matches at Lansdowne Road. I remember seeing my first big boxing match, the Spider Kelly-Famechon fight at the RDS, my first Opera at the Gaiety, Ronnie Delaney running a mile at Lansdowne Road, shortly after winning the Gold Medal at the Olympics, as well as all the big films of the day during my time in Dublin.

The last time I met Lady Goulding was about fourteen years ago when she officially opened a Riding School for the Disabled in Sligo. She was delighted to meet me with my wife and daughter and we had our photo taken together as a memento of the occasion. We will not see her likes again. Ar dheis De ar a anam dilis.

Brian Crummy

Thank you Brian for these lovely memories of Lady Goulding and the CRC. She will always be remembered for her great work on behalf of polio people - Editor.

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Fund-Raising News …

Marathons:

Since the June newsletter, money from the Dublin mini-marathon has been coming in, and so far we have received over €6,000. Would anybody who still has sponsorship cards and money to return, please do so as soon as possible. We would expect to exceed last year’s figure of €7,500, and as we have virtually no expenses this year, it is all profit—tremendous thanks to Anne Burns and all the participants.

Many thanks to Noreen Bruen and those who participated in the Cork Marathon. Nine entrants participated for the Post Polio Support Group, a wonderful effort!

Christmas Cards:

It is now coming around to Christmas card time, and this year we have an increased number of outlets, and we also have permission to hold cash collections at a number of centres. We are in big need of people to help with these Christmas card sales and collections, so please see the timetable of venues enclosed with this newsletter, and if you can offer to help sell cards, even for a few hours, or to arrange to get some of their friends or relations to do so - don’t forget, “many hands make light work!” An order form for cards is also enclosed. Please order your cards as soon as possible, and also encourage your friends to buy our cards as well, as we would like to double our income from card sales this year.

The money received through our fund-raising efforts goes towards the provision of aids and appliances for our members, physiotherapy, occupational therapy, respite breaks, research and the Survey.

Funding from the Health Boards to all voluntary groups, including the Post Polio Support Group, is likely to be cut back this year because of budgetary restraints, and we have to rely more and more on fund-raising to ‘keep the show on the road’! So if you or your family or friends would like to hold a cake sale or a coffee morning or some other fund-raising effort please let Philo Mullaney or Anne Burns know (contact details on page 2) and we will do all we can to help you. Remember small is beautiful, and all the small things can add up to something big. Many thanks.

Hugh Hamilton - Fund-Raising Chairperson.

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Bray/Wicklow/Dublin Social Gathering ...

The first social gathering of a local Bray/Wicklow/Dublin Post Polio Support Group group, held on Friday, 5 th September was, without a doubt, a real success.

It was supported by Anthony Carrick, Post Polio Support Group Administrator and Board member, Anne Burns. I was very grateful for their support with this pilot scheme, as I was not sure how it might go. I need not have worried, as it became apparent, as everyone relaxed, how important and necessary this outlet was.

After the initial introductions, everyone plunged enthusiastically into comparing notes on the different effects Post Polio Syndrome (Late Effects of Polio) has had on our lives, giving quality reassurances and credibility to individual worries. Our condition, as it turned out, acted as the perfect icebreaker, and soon we were chatting as if we had known one another for a much longer time. Personal concerns were discussed amongst the group, and amongst one another, swapping important information from helpful gadgets to best make of car to take a wheelchair.

Overall, the atmosphere was very relaxed and for the first time in my life, I was free to discuss this "disease” without it being dismissed, ignored or scorned. Finally, I was amongst my own kind, and the utter frustration of constantly attempting to explain to a still sometimes sceptical public, gave way to a comfortable space of credibility supplied and supported by one another.

It was quite apparent we all felt much the same and the main objective for the commencement of these social evenings was being finally realised. The choice of venue for this event was The Esplanade Hotel on the seafront in Bray. It has all the necessary requirements needed to host such a gathering, including a spacious lounge and a ramp for those in wheelchairs, or with difficulty climbing the steps to the foyer. The only thing in question was the choice of night itself.

Friday nights the hotel has live music, and I thought that the music might help us all to relax. As it turned out, it was unnecessary, intrusive and interrupted our real need to hear one another. So, on deliberation, we have decided to continue with the use of the Esplanade but to change the evening to a Tuesday.I hope that everyone got a much enjoyment as I did from the evening, and I am looking forward to our next meeting, which will be on

Tuesday the 7 th October at 8.00 pm.
In the Esplanade Hotel,
Seafront, Bray.

Thank your all for coming and I hope that all those who rang to say could not make it this time, will be able to join us for the next time.

Belinda Redmond.
Telephone 01 286 0251

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Jackie’s holiday to Italy - The Outcome …

Here follows the follow up to the Holiday item in the Spring Newsletter.

The very hot weather took us by surprise when we landed in Bologna Airport at the start of our Italian adventure, but like all willing holiday makers, we got used to it and decided not to complain.

As the holiday departure date approached I was hoping against hope that all would go well for us, and that we wouldn't arrive in Italy and find that the accommodation we had booked was dreadful! I need not have had any worries. Everything was great. The flights, the hired car, the accommodation, both Ravenna and Pisa, all worked out very well.

We collected our car at Bologna Airport, and made our way to Ravenna. Although the AA Route Map did say it would take us two hours, they don't take into account the facts that we drive on a different side of the road, we have a steering wheel on a different side of the car, the Italian drivers etc. etc., but all in all it took us about three hours, which wasn't bad. Our accommodation was very nice. Our particular chalet was not accessible, but I was OK with that. The actual site however did have accessible bungalows with ramps. The shower/toilet block was accessible with a dedicated disabled persons toilet and shower. The pool was accessible. It did not have a hoist, but a willing Life Guard was available. There were a number of people in wheelchairs at that particular place while we were there. The beach had an access route - like a wooden walk way - quite narrow, but there if necessary - on a portion of the sandy beach along side the sun chairs and umbrellas. The beach was about 250 metres away from the site. Practically all places were accessible in the local town and also in the main town Ravenna about 10 km away.

Our second stop on the Italian adventure was Pisa. The site here was much smaller than the first. We stayed in a mobile home with a wooden veranda. This was not accessible, but for those who don't have bother with steps, there were only two or three; I would recommend it. The beach for this site was further away but we could drive to it, my husband would leave us as near as he could and then park the car on the street. There was a walk way down to the beach. We did see disabled people in this tourist area which was about 10 km away from the town of Pisa itself but there were none at our particular site or beach.

We went by train to Florence and found this a good way to travel, no Italian drivers !!!. We had to restrict our sight- seeing as I didn't have my wheelchair me on holidays, but I would encourage anyone who could take their wheelchair to do so. I did not have time to check into details of hiring one, but I am sure this could have been arranged if I were to have wished to do so. One good thing that I did discover was that while sightseeing in The Baptistery in Florence, you could have the use of a wheelchair. This was wonderful, as it was the last place we went on that particular day and I was really tired, the Church is very big with a lot of things to see and read, and it was wonderful to be able to sit down and do it at my ease. I was reluctant to get out of the chair when it came time to go !!! Using a wheelchair in some parts of Florence and Pisa may turn out to be 'work' for the pusher, as the streets are narrow and very old with cobblestones, but it could be done, I am sure. Because we had restricted our sightseeing, it just means we will have to return again some other time!

All in all, the experience of organising the holiday on the Internet and finally getting there, putting faces to names that contact was made with over the months, was really terrific. Comparing the cost to that of a Brochure holiday of the same type - fly/drive - two centre stay - was very favourable. The whole experience would encourage me to attempt it again, and the next time round I would have gained more knowledge and know some of the pitfalls to avoid.

Jackie Minnock

I got the following addresses from an article in the Travel Section of the Irish Times Magazine 30/08/03 - A Reader Writes : Travelling with Disabilities.

www.holidaycare.org.uk Ph: 00-44-845-1249971 - this is a UK based charity Holiday Care company with a large database of accessible hotels, campsites and hotels around the world.
Disability Network have a web site at www.radarsearch.org. Can be Done is the name of a tour operator with a web address of www.canbedone.co.uk and Ph: 00-44-208-907240. There is also an Accessible Home Exchange site at http://www.independentliving.org

Hope this information is of use. I have not been to these sites as yet but plan to pay a visit soon. JM

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IWA/NCBI Peer Counselling Programme …

Reprinted with kind permission of Spokeout magazine—Winter 2002.

The Irish Wheelchair Association and the National Council for the Blind of Ireland (NCBI) have been offering a free Peer Counselling Service to people with disabilities since 1995. The nature of the service is that people with disabilities, who are trained in counselling, are available to talk with other people with disabilities - ’peers’. As a result of their personal experience of disability, the counsellors are uniquely equipped to assist clients in dealing with issues that may arise in life.

The ideas of self-reliance and empowerment are critical to the peer counselling philosophy. It can be a very powerful experience to meet with someone else who, through their own experience, has an understanding of what disability can mean to a person and their family. The conversations not only draw on the peer counsellor’s training, but on their ’insider knowledge’ of disability, says Keith Oulton, Manager of the service. He explains, ‘insider knowledge’ as ‘understanding that is only available to people that have experience of a particular phenomena - in this case, disability’.

One of the main theoretical influences on the Peer Counselling Service has been narrative therapy, which holds at its centre, a belief that the person is not the problem, that people have expertise in their own lives, and that the therapy process is about helping people access this expertise.

The IWA/NCBI programme is the first of its kind in Ireland. It came about as a result of an Irish Wheelchair Association survey carried out in 1994, in which over 50% of members reported that they wanted to talk to someone who could listen to them in a counselling-type situation.

Since its foundation, Keith feels ‘Peer counselling has evolved into a more complete and comprehensive therapeutic service. The type of issues dealt with has broadened - although we deal with disability issues, we acknowledge that disability doesn’t stand separately from other difficulties in life. Clients who come in to talk about a disability issue often bring other issues with them as well’.

Geographically, the service has expanded in an effort to meet people in their own community. The service is available throughout the Dublin area, Cork City and in some parts of Meath, Kildare, Wicklow, Wexford, Carlow, Cavan, Galway, Mayo and Laois. New aspects to the service have been launched, including a limited family therapy service and, most recently, a phone service to reach people in areas where there is not a peer counsellor. This service is a confidential helpline available to anyone who would like to talk about the effect of disability or visual impairment on their life, or the lives of their significant others. Initially, the service will be available on Monday, Wednesday and Thursday, from 7.00 to 10.00 p.m. The phone number is LoCall 1890 234 313.

From October 2003 peer counselling will be available once a month in Sligo, Mullingar and Kilkenny. In the summer of 2003 they presented their work at the International Narrative Therapy and Community work Conference, and the work was also published in the 2003 issue of The International Journal of Narrative Therapy and Community work.

If you are interested in becoming a peer counsellor or wish to avail of the service, you can contact the Peer Counselling Service directly by phoning 01 833 8219 Monday, Wednesday and Thursday from 7.00 to 10.00 p.m., or you can email the office at peer@iwa.ie.

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Responding to violence against women with disabilities …

The National Disability Authority (NDA) and Women’s Aid, have published a booklet entitled ‘Responding to violence against women with disabilities’. This booklet can be obtained NDA, Tel: 01-6080400 or downloaded from their web-site at www.nda.ie.

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Useful Tip …

For those with uncooperative fingers and a need to light a fire or gas cooker: The long-legged matches produced for barbecue fires etc., may be the answer. They should be available from most supermarkets.

Joan Bradley

City Centre Tub …

The day it arrived it was a delight to the eye, filled with flowers and yielding a perfume fit to intoxicate. It was made of concrete, heavy, secure and filled to the top with soil. A fitting welcome for a President on the day she declared 'open' the flat complex. The flats had been renovated, transformed into comfortable homes.

The flowers only bloomed briefly, for the children decided to pull them up. Some residents tried a replant, but they were pulled up again; it was no good for they did not survive the trauma. The adults shook their heads, such vandalism! It was obvious that nothing of beauty would survive there. So the large concrete tub was bereft. Rubbish was thrown in, sweet papers, cigarette packets, crisp bags, condoms, nothing was too unsavoury for the tub. The children jumped in and danced on the clay, impacting it until it was as hard as its concrete container.

One sunny day a tiny yellow bloom, on a slender stem, appeared in the tub; it was a creeping buttercup, Ranunculus repens. It had been waiting, rooted deep in the soil, ready to push itself up against all the odds. A delicate bloom born and grown in adversity. In spite of opposition strong enough to crush any aspiration of life or beauty, it had formed its one seeded fruit to propagate.

This buttercup had a life force beyond its tiny self, it had survived and no doubt it will continue to survive, somewhere, long after this plant is dead.

The tub was removed, soil, creeping buttercup, the lot; a health hazard they said, but in a human heart a seed of hope, of life, survives; one that can rise as high as the sky however hard the soil, or adverse the circumstances, no matter where the location.

Joan Bradley

Mobility Scooter Launch …

(Advertising article)

Those of you who visited the Access and Mobility Exhibition at the NSC (North Dublin) will have seen the impressive range of mobility products displayed by Advance Electrical Mobility. On the stand was a full range of high quality mobility scooters and chairs. Advance Electrical Mobility also supply Bathlifts and Riser Recliner armchairs, electric profiling beds and patient lifting hoists as well as golf electric caddies and buggies.

The company is Irish owned and managed by Gary Taaffe, who commented that they now have mobility scooters or powered wheelchairs to suit the individual requirements of their customers. There are now eight scooters in the range and the latest addition - The Richmond 4 - will give customers even more choice and good value for money.

The main features include:

• Sliding and rotating seat, softly padded. Height and width adjustable
• Front steering tiller, fully adjustable for comfort
• Front and rear lights
• Front and rear bumpers
• 26AH sealed, maintenance-free batteries
• Reliable 4amp automatic battery charger
• Programmable controller to suit individual requirements
• Left or right hand controls
• Quickly dismantles for transportation
• Stylish split rim alloy wheels
• Compact, stable, safe and easy to use
• Stylish design
• Champaign colour
• Powerful motor and transaxle—18+ stone carrying capacity
• Range: up to 20 miles.

Advance Electrical Mobility have an excellent well-established track record in the mobility business since 1986, providing mobility solutions and service back-up for their customers throughout Ireland.

Enquiries:
Phone: 01 4553168
Fax: 01 4550763
Email: info@aemobility.com
Web: www.aemobility.com

How to record an oral History of your Experiences and your Thoughts about Polio …

By: Mary Le Clair

Reprinted with kind permission Post-Polio Network (NSW) inc. Network News.

Biography: Mary Le Clair arrived in Australia from Canada in 1973 and formed a public relations business where she designed and presented segments of public platform speaking and other aspects of communication. Due to the late effect of Polio Mary has now retired and uses a scooter to get around.

Many people have urged me over the past few years to relate the story of my life. The idea wallowed in my mind until I met Janet Simpson, the perfect person to do the writing! She was an English teacher for many years before becoming a lawyer, thus bringing the perfect skills to the job … writing, attention to detail, and the ability to seek out details.

My main reason for beginning the project was to give my own children some details of their life in Canada and some background of their ancestry. I also think it is imperative for each of us to preserve some snapshots of life as it was when we lived it. Unless we contribute to history, our own contribution, however small it may seem, is lost forever. For Polio Survivors, it is particularly important that our stories be told. It is inconceivable to most people that children could be snatched from all they know and love and ‘abandoned’ for not days but years! This experience colours our actions and reactions. It is also possible that our contributions will keep alive the debate about vaccinating children. Young parents today just have no idea of the devastation of polio. Young doctors aren’t even studying the disease in Medical schools.

So for these reasons over the period of a year, Janet and I worked on my memories. The exercise has given my children some shapshots of their past and talking about the project has kept the vaccination issue up front. It has also been a cathartic experience. At the end of the book, I liked myself better … a most unexpected result! But the most valuable and unexpected result was the the polio experience was put into perspective. Let me explain. We are often urged to write about our fears or demons. One problem about that for polios is that most of us had it as children and the memories are buried so far into our psyches they can never be retrieved. Even those of us who had it as adults have buried many of the terrible memories so deep that we must dig long and hard to get them up to our consciousness. Another problem with writing only about the polio experience in isolation is that we can too often lose sight of the fact that it is only a part - however traumatic part - of a WHOLE LIFE. Everyone, when reaching middle age and beyond, feels the urge to look back on their lives and this is an excellent way to do it for everyone. Consequently, I strongly recommend that you stop worrying about what you can’t remember and concentrate on what you CAN. It is amazing how those memories will trigger others … unbidden. This paper is written to encourage you to consider writing your stories and memories down, and to give you some tips and tools to help you do it.

There are a variety of ways to retrieve memories, and some of them may help you:

TIME LINE:

Take a note pad, preferably with lines and record every year from the year of your birth down the pages. Then enter significant dates from your own life. For example, your birthday, family members’ birthdays, weddings, graduations, deaths, etc. Then enter major events that you remember or can research. Each of these entries may spur a tiny memory .. Jot down key words about that memory onto the back of the paper to be expanded later.

FAMOUS PEOPLE:

Make a list of famous people. What made you think of them … a dress? Another person? Remember, key words on the other side of the paper for later, then forge ahead with …

SONGS:

What were you doing when ? Who did you know?

PHOTOGRAPHS:

Try to look at the clothes and the surrounds of the picture. Try to remember one characteristic of some of the people in the pictures.

OLD BOOKS AND MAGAZINES:

If you have none, spend some time in the local library. Sometimes the model of the car you see, the different artefacts or the price of something may twig a memory. Jot it down. Try not to fill in any in-depth memories while you are doing any of these things.

DRAW A PICTURE OF THE HOME YOU LIVED IN:

When you do this put into the rooms the furnishings you remember .. The colour of the walls, the carpet … the paintings on the wall. Maybe you can remember the hospital .. Draw the floor plan … see the people in your mind’s eye.

TAPE RECORDERS:

If possible, keep a tape recorder handy. As you think of something as you go about your daily chores, mention them onto the tape for writing about later.

PETS AND TOYS

SCHOOL DAYS

MELLS:

Interestingly, few people realise that smells are the most potent memory enhancers.

OTHER PEOPLE:

I put this near the end because sometimes others will remember something differently. This can influence your recordings of your own memories.

HOLDING KNICK-KNACKS IN YOUR HANDS:

HOLIDAYS:

MODES OF TRANSPORT:

As you begin to fill in the blanks you will find that you will have to move things around on the time line because it will be difficult at first to get things in the right order. Don’t worry about that.

RESULTS:

You will remember more than you think! Some of the later memories will take on new meaning when they are seen in relation to all the things that have happened in your life. Even though you still may not be able to record the ‘polio experience’ in detail, many of the things you do remember will help you fill in the missing pieces.

You will be amazed at how may happy memories will be intertwined with the sad ones, giving you a balanced look at your life. Hopefully, you too will like yourself better at the end of the exercise!

(I would really love to hear your stories, and with your permission, include some of them in the Newsletter. So now, get that lined copy ready and the pencil sharpened … or of course you could use the computer! - Editor)

Is heat intolerance also a post-polio problem? …

By: Richard Bruno, PhD

This article was sourced from the Polio Post News, North Central Florida Post-Polio Support Group, September 2003, and is reprinted with kind permission.

Question:

In The Polio Paradox and on Polio Survivors’ websites, I read about ‘cold intolerance’, that Polio Survivors are always cold. My feet are always cold in the winter, but I have the most trouble in summer. I get exhausted in the heat, especially when it’s humid. Is heat intolerance also a post-polio problem?

Answer:

You bet. In our 1985 National Post-Polio Survey cold caused muscle weakness in 62% of Polio Survivors, muscle pain in 60% and fatigue in 39%. But that Survey also found that 39% of Polio Survivors have fatigue when it’s hot.

Whether it is cold of hot, Polio Survivors have three strikes against them when it comes to controlling their body temperatures. First, the poliovirus damaged the hypothalamus, the part of the brain that serves as a body’s thermostat. Second, the polio virus killed neurons in the spinal cord that make the veins in your skin become smaller or larger as the temperature changes. Basically, Polio Survivors’ veins are always too big. When its cold outside warm blood pools in those big veins near the surface of the skin, causing heat in the blood to radiate into the air, the skin to get very cold and to look purple or even blue. When it’s hot outside, or when Polio Survivors take a long hot bath or spend time in a steaming Jacuzzi, the skin becomes lobster red as the veins and the arteries open wide and hot blood rushes to the skin. When polio survivors stand up, gravity pulls blood into the open veins in their legs and blood pressure can drop, causing fatigue, light headedness or even a faint. And there’s the third strike: Polio Survivors who have smaller leg muscles due to polio motor neuron damage causing muscle atrophy have more blood pool in the legs, since muscle contractions help to pump blood back toward the heart.

So, since your body can’t regulate its own temperature, you have to do it. Our 1983 study found that Polio Survivors’ nerves function as if it’s 20 degrees colder than the temperature of their skin. In the winter, Polio Survivors should dress as if it's 20 degrees colder than the outside temperature. You need to dress in layers so that you can regulate your body temperature by changing the amount of insulating clothing covering your body.

But the trick is to stay warm from the get-go. You should dress right after showering when your skin is warm and red. Try wearing heat-retaining sock liners or even long johns made of the woven, breathable plastic fibre polypropylene. Then put on warm socks, battery-powered heated socks or ski-boot insoles, and put on the layers. (If you ever need surgery remember to remind the doctors and nurses that you get cold easily so they can provide a heated, water-filled blanket in the recovery room.)

When it’s hot, stay out of the sun, move more slowly and take more frequent rest breaks with your feet elevated to make it easier for blood to flow back to your heart so that you can prevent foot swelling and keep your blood pressure up. It’s especially important to have smaller amounts of food for lunch, have cool foods and cold drinks, and to take a feet-up break after eating, since midday is when Polio Survivors have the most trouble with dropping blood pressure and fatigue. It’s also a good idea to take cooler baths or showers in summer and to keep the air conditioning turned up. It is also as smart to cool down the car before getting in during the summer as it is heating the car up in winter. But be careful. Whether you’re being chilled by a Northeast wind in November or by excessive air conditioning in August, always cover your upper body, especially your neck, to prevent muscle spasms and headaches caused by cold air blowing on your muscles.

Many Polio Survivors don’t realise that they can have as many symptoms. and some even more, during the change of seasons, when the thermometer goes up and down from day to night and from day to day. Fall and spring bring increases in symptoms, especially muscle pain and headaches, as Polio Survivors’ temperature-challenged bodies can’t decide if they should sweat to stay cool or shiver to stay warm. Layering of clothing is especially important when the world is as thermally confused as Polio Survivors, unable to decide what temperature it wants to be.

(Remember, all Polio Survivors do not necessarily have this problem, so read and take out of it what applies to you - Editor)

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CORK STRESS MANAGEMENT WEEK-END

The Southern Region held a very successful week-end in St. Dominic’s on 26th and 27th September. As usual, Maureen had everything organised, and the week-end commenced with a very interesting talk by two physiotherapists from the Southern Health Board. They informed our members how physiotherapy can assist in the management of Post Polio and what facilities were available in the Southern Health Board Region. This was followed by news from Head Office; Paula and Anthony conveyed greetings from Jim, Joan and the Board, and gave updates on the Survey, Fund-Raising, and where the money raised goes to. There are seven venues in Cork where our Christmas Cards will be on sale this year. Noreen Bruen told us about her Mini-Marathon - she came in first in the wheel-chair category, and there was nine people in all who donated all monies collected to the Post Polio Support Group. Well done and thanks to Noreen and friends.

When the work of the evening was finished, An-thony produced a few bottles and the chat was mighty!

On the Saturday, Anne Alcock produced her own sort of magic in the shape of exercise to music, and how to get to a deep state of relaxation, we also had time to reflect, and time to talk in groups about our own wisdom and how to put the fun back into our lives. The session concluded with hand reflex-ology and Mass.

All in all a great week-end was had by all with a good mix of chat, information and relaxation. Many thanks to Maureen and our members in the Southern Health Board Region for making us so welcome. By the way, the lift worked perfectly!

ADMINISTRATOR – Anthony Carrick
OFFICE ASSISTANT – Victor Purcell

HEAD OFFICE
Tel/Fax 01 873 0338
E-mail: info@ppsg.ie
Website: http://www.ppsg.ie

BOARD MEMBERS

Jim Costello: (Chairperson)
Tel/Fax: 01 668 6986 (H)
Tel/Fax: 01 620 6154 (Hosp)
Email: jjcos@indigo.ie

Joan Bradley: (Secretary)
Tel/Fax: 01 454 9237
Mobile: 087 7637598
Email: secretary@ppsg.ie

Mary McEvoy: (Treasurer)
Tel/Fax: 0502 27204
Mobile: 087 240 1591
Email: treasurer@ppsg.ie

Paula Lahiff: (Newsletter Editor)
Tel/Fax: 071 64791
Mobile: 086 322 4402
Email: newsletter@ppsg.ie

Hugh Hamilton (Fund Raising Coordinator)
Tel: 01 289 4800 Fax: 01 289 2394
Mobile: 087 255 3012

Frank Jones
Tel: 01 820 0320
Mobile: 087 240 1591 or 087 9385537

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

Phillo Mullaney
Tel: 01 832 1629
Mobile: 087 907 4758

Anne Burns (ex oficio)
Tel: 01 453 4150
Email: anne.burns@agriculture.gov.ie

REGIONAL REPRESENTATIVES

Midland Health Board Region:
Patrick Fitzpatrick
Tel/Fax: 0505 46738
Email: paddyfitz@eircom.net

Mid Western Health Board Region:
Noreen Mullane:
TelFax: 061 302830

Southern Health Board Region:
Maureen O’Sullivan:
Tel: 021 4372 017
Fax: 021 4376 032

South Eastern Health Board Region:
Ann O’Kelly Guerin
Tel: 053 32633

Western Health Board Region:
Barbara McDonagh
Tel/Fax: 091 593 664
Email: babamcdonagh@eircom.net

North Western Health Board Region:
Paula Lahiff
Tel/Fax: 071 64791
Email: newsletter@ppsg.ie

North Eastern Health Board Region:
Jackie Minnock
Tel/Fax: : 042 937 7037
Email: jackiem@gofree.indigo.ie

South Western Area Health Board, & Northern Area Health Board
Joan Bradley
Tel/Fax: 01 454 9237
Email: secretary@ppsg.ie

East Coast Area Health Board
Monica Cantwell
Tel: 01 497 1274

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.

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Tel: +353 1 889 8920 Fax: +353 1 889 8924 Email: info@ppsg.ie