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The Survivor Newsletter: Summer 2002

A Few Words From The Editor...

Dear Members

I can’t believe so much has happened, both in my own life and in the life of the Post Polio Support Group, since the last newsletter. I have been to New Zealand—and have seen the most amazing places thanks to my wheelchair and my husband who did all the pushing!

Ireland still has a lot to learn re access, compared to New Zealand, where all the pavements have crossing ‘dips’, the public buildings and the public transport are all accessible, and having a disability is absolutely no barrier to anything!

As you can see from the photos, the mini-marathon was another occasion to be remembered, an experience I will never forget. See pages 5 and 6 for reports.

The fundraising committee is working hard, and have produced some lovely Christmas Cards at a very reasonable cost. Read more about it on page 7. Turn to page 8 for an interesting article on protecting your arms and wrists from tendonitis - a common complaint with Polio Survivors who put lots of pressure on their arms and wrists using canes and/or crutches or wheelchairs.

News about the Post Polio Support Group Survey is on page 4; we do encourage you to take part, as the results will give us a comprehensive picture of what the needs of our members will be for the next five years. We have two book reviews on pages 12 and 14. If you want to buy these books from your bookshop or get them through the library, just quote the ISBN numbers and they should be readily available. You will find news from the office on page 15 and news from the regions on pages 16 and 17.

Don’t forget the reminder to send in your annual subscription as soon as possible, and also if you have any sponsorship money collected from the mini-marathon, please send this in as well. We extend a warm welcome to our new Board Member Hugh Conlon, and three new regional reps; Paddy Fitzpatrick, Monica Cantwell and Ann O’Kelly Guerin.

Please make sure that your local health care professionals have our new brochures and posters (if you need more brochures, just phone headoffice). And last but by no means least—keep well!

Paula Lahiff—Editor.

From The Chairperson

Another summer is upon us and I sure hope that the weather will improve. Its June now as I write this and its not looking promising. Maybe July will bring the expected summer.

We were pleasantly surprised at the excellent turnout in Portlaoise for our AGM this year. Members attended from all parts of Ireland. There were over 80 present on the day.

After the formal part of the meeting three presentations were given by Nora Stewart, Dr Grainne Gorman and Eibhlis Cahalan. Nora gave an update on the Pilot stage of our Polio Survivor Survey and its results to date. Dr Grainne spoke on Post Polio Syndrome and the research project presently underway in Beaumont Hospital. Finally, Eibhlis gave a presentation on the role of Physiotherapy in Post Polio. All of the presentations were extremely well received and feedback on the day and since has been very positive.

We finished the afternoon with a Question and Answer session in which there was very good participation. - Jim

Handouts of Dr Grainne's and Eibhlis's presentations are available from our office. Tel: 01 783 0338

Polio Survivor Survey

The pilot stage of the survey is now completed and the results analysed. Having carefully considered the whole project and its financial implications for our Group the Board decided to proceed with the main stage of the survey at its recent June meeting. Consequently, all Polio survivor members living in the Republic will receive a letter during July offering them an opportunity to participate in this important project. It would be appreciated if those participating could return their forms (included with the letter) as soon as possible to assist our overall planning of the project. Those who decide to participate will first receive a letter from the project co-ordinator Nora Stewart that will include "Part A." of the survey. This is a lengthy document, which should be completed by the participant prior to the visit of the Occupational Therapist who will be in contact to arrange a suitable appointment. During their visit the Occupational Therapist will complete "Part B." of the survey document and the participant will have an opportunity to ask questions if they wish. It is anticipated that the visit will last approximately 2 hours. We request all participants to facilitate the Occupational Therapist as much as possible with regard to the arranging of their appointment. As you can appreciate, this is an extremely large project covering the entire country and it is our aim to complete it as soon as possible so that the information gathered will be up to date.

Jim Costello, Chairperson.

The Mini-Marathon - two perspectives

Such an Experience

From Paula Lahiff

We were like children, donning our ‘fancy dress’ T-shirts with Post Polio Support Group emblazoned on the back and the front, blowing up balloons and stowing black bags and scissors in Joan’s bag for emergency rainwear. Then, with frozen bottles of water from the freezer, which would quench the thirst on the long walk, we set off to join the crowds of women all going in the direction of the START. Joan had the able assistance of three lovely girls from Collaiste Duilig to push her wheelchair, and I was assisted by my daughter Karen, who was taking it in turns with her friend Kate to push my wheelchair.

It was amazing to see T-shirts with the names of so many different charities and deserving causes. They were all there, Cancer Research, Irish Heart Foundation, Temple Street Children’s Hospital, AWARE, MS, the Jack and Jill Club, and then the unusual ones, ‘The society for parents who had lost a child before or shortly after birth’, ‘The Polymucosaccrides Association’, and many more. There were those walking for Schools and Sports Clubs and Animal Welfare, and on and on. It was mind-boggling to think that so many deserving causes were to benefit from a great day out for 35,500 women on a bank-holiday Monday in June. I overheard some interesting conversations, like the two women, one with a Breast Cancer Awareness T-shirt, and the other with Irish Heart Foundation T-shirt. “No, you can’t have a cigarette, not with that T-shirt on you!”

The Master of Ceremonies had everyone warming up and doing stretching exercises as we inched up to starting line, and suddenly we were on our way, walking and rolling down the middle of the Fitzwilliam Square. I had often dreamt of walking the streets of a car-free Dublin, and here was my dreams come true. Women waved and cheered from the windows of Holles Street Hospital, bands played at each street corner and the kilometres fell away. Mount Street, Ballsbridge, St. Vincent’s Hospital, the up the hill at Nutley Lane and on to the Stillorgan Road. We gotseparated from Joan and her helpers, but my assistants were taking it in turns, a kilometre each, and marking a steady pace. We saw other walkers for the Post Polio Support Group and greeted them like long lost friends, thanking them for their efforts. Up over the flyover to UCD, down the other side and we were on the way back. There were women as far as the eye could see; I had never been part of such a huge crowd before. Then past the Donnybrook bus station, and as we came into Leeson Street, we got this beautiful smell of cooking food! A family were having a barbeque in their front garden, eating steaks, drinking wine and watching the race! Such a disappointment, no food for us there. As we approached Stephen’s Green, we were invited to go through the final ‘straight’ and collect our medals. Exactly two hours from start to finish. We found Joan and her friends, and we all went into the pub for a well-earned drink. Everyone was congratulating each other and comparing notes. It was certainly an experience I will never forget.

The Marathon and the Calliper

From Joan Bradley:

.It all started with a calliper, my spare one in fact. It is not a bad idea to keep your old one, just in case, although I know many of us wear them, literally, to within an inch of their lives.

When the fund raising committee suggested the Post Polio Support Group enter for the women’s mini, I thought ‘not for me’. I would not get far; they would probably need an ambulance to pick me up after the first 500 yards. Then I wondered about doing it in my wheelchair, but even then I would never make it on my own, I would need pushing. I suppose many would laugh at that. ‘Competing in a marathon, on wheels, and not even propelling herself, most of the time! However, it did require courage! It also required some fine strong young ladies to push; I had none readily available.

Well, that brings me back to the calliper. One day I got a phone call from a lady asking me if I knew where she could borrow a calliper to use in a play. Her college group, ‘Dry Ice’ was putting on a play and needed one.

‘But callipers are made to measure and don’t not normally fit anyone else’. I explained.

‘How tall is the actress?’.

‘About 5.4’ she replied.

‘I am 5’2’, maybe it is worth a try.’

I replied slowly. So one very wet morning two young ladies arrived on my doorstep. Would you believe it, we managed to get the calliper on her and she could walk in it! Off they went, very pleased with themselves, promising me a free ticket for the play. Then I thought ‘ah, young ladies!’ I wonder if they would push me in the marathon. I phoned and sure enough they were happy to help. So on the 3 rd June 2002 I completed the women’s mini marathon and got a medal, with the aid of three very nice young ladies, aspiring to more than a medal – Hollywood!

In due course I attended the play ‘Children of Eve’ and saw how important the calliper was to the plot. At one stage when the actress had the thing off, I observed a red mark on her leg where it had chaffed her, ill fitting no doubt, but she did not complain. I really enjoyed every minute of the play and was presented with a box of chocolates at the end. My calliper is now safely back in my wardrobe, not with a marathon medal, but it too having had its moment of fame.

OTHER FUND RAISING NEWS:

The foregoing articles say it all about the Mini-Marathon! Many thanks to all concerned.

One of our members, Peggy Roche from Co Cork, ran an extremely successful Coffee Morning, which raised a very substantial amount, and we are very grateful to her for her work on our behalf. We are also still receiving money from the Breakfast launch last November, and these, plus some other corporate gifts during the last month, added up to over €5,000.

As those of you who were able to attend the AGM will know, we are producing Christmas Cards this year. We had some of them on display at the AGM, and they are priced at €5 for a pack of 8 cards (€ 6 to include postage). We will include illustrated details and an order form in our next newsletter. Anybody who would like to order some now, or would be able to sell them for us, they are available from all the regional reps, and from the office. At the suggestion of one of our members, we have contacted several supermarkets and obtained permission to sell cards on various dates in November at Liffey Valley, Merchants’ Quay and Carlow, as well as Dunnes Stores in Sligo. If you feel that you would be able to take on the responsibility of selling cards outside the supermarket in your area, please contact the office for further details.

We are looking into a number of other fundraising possibilities such as Concerts, Christmas Carols, etc.

Once again we would ask members to please try to organise some small function like our Co Cork member did, as it is all the small events which add up to significant amounts.

Thank you all once again.

Hugh Hamilton - Fundraising Chairman

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KEEP MOVING … Protect Your Arms

By Julie K. Silver MD and Maria H Cole, OTR/L

(Reprinted with kind permission of Accent on Living - Spring 2000)

Our arms are the key to our ability to remain as mobile and independent as possible. We need them to bathe ourselves, feed ourselves, and use a telephone, computer or fax.

As we age, our arms become more susceptible to injuries. For individuals with pre-existing disabilities, these injuries may occur at an earlier age and be more severe because of the increased demands that are required of the arms for day-to-day activities. We can protect our arms from injuries and learn to treat injuries early to promote healing.

This article will cover four common arm injuries that are treatable and generally curable. Part one of the article is in this issue and part two will be in the autumn newsletter.

Keep in mind that many other types of injuries exist and that the treatment is entirely dependent on having an appropriate diagnosis made by a medical doctor. This article is written in order to encourage prevention of injuries to the arms and to encourage readers who have arm pain, weakness, numbness or tingling to seek early treatment after an appropriate diagnosis is made by a medical doctor.

Tendonitis:

The occupational and/or physical therapist can provide a wealth of information on how to avoid poor techniques and position of our arms and how to avoid re-injury. Tendons are the structures that are found at both sides of a muscle and are used to attach the muscles to bones. Tendons often become irritated and inflamed through overuse, and because they don’t have a good blood supply, can be a little tricky to heal.

Symptoms of tendon injuries generally include pain at the site of the injury. This pain is often worse with activity but may be quite severe atnight when resting. Tendon injuries do not cause numbness and tingling feelings in the arms. Described below are two common types of tendon injuries in the arms:

Shoulder Tendonitis:

The rotator cuff is a group of four tendons that work together to stabilize the shoulder, especially when moving the arm overhead. The shoulder has more mobility than any other joint in the body, however, this makes the shoulder more unstable than other joints that can’t move as freely. Therefore, the shoulder (particularly the rotator cuff) is prone to injury because of it’s inherent lack of stability.

Rotator cuff tendon injuries occur commonly and in the early stages are easy to treat. Long-standing inflammation of the tendons can lead to the tendons becoming weaker and in some instances tearing and rupturing. A complete tear of the rotator cuff results in an inability to lift the arm overhead. This may or may not be correctable. Another potential complication of long-standing rotator cuff tendonitis is that lack of mobility in the shoulder may cause it to ‘freeze’. This is commonly called a ‘frozen shoulder’ and in medical terms is called an ‘adhesive capsulitis’. Once again, this may or may not be correctable.

Elbow Tendonitis:

The tendons that attach to the bones at the elbow (medical or lateral epicondyle of the humerus) often become inflamed. In medical terms this is called medial or lateral epicondylitis. These tendons arise from muscles that move the wrist and since the wrist is involved in so many functions, it is not surprising that tendonitis frequently occurs in these tendons. Tennis players who use a lot of forceful wrist movements often have tendonitis of the tendons that control wrist movement and attach to the elbow. Therefore, this medical malady is commonly termed ‘tennis elbow’. However, tendonitis at the elbow can occur in anyone who uses his or her wrists (and hands) routinely. In fact, this unjury is often seen in office workers who spend their days using the phone, fax and computer, as well as filing and other repetitive activities. Elbow tendonitis can also occur when individuals place a lot of pressure on their wrists such as during transfers or when using mobility devices such as canes and crutches.Nearly always, elbow tendonitis is treatable and usually curable.

Medical Treatment for Tendonitis:

Medical treatment generally consists of rest from activities that provoke the symptoms of pain. Using ice on the inflamed tendons can be very useful (the authors recommend using an ice pack or ziplock bag of ice water applied directly to the elbow or shoulder for 20 minutes at a time, two-three times each day). A doctor may prescribe anti-inflammatory medications. Injections of local steroid medication (similar to cortisone) can also help heal these injuries. Occasionally surgery is necessary and if recommended, is generally successful.

Rehabilitation Management of Tendonitis:

Since tendonitis can impact our ability to perform everyday activities, the goal in rehabilitation is to reduce pain, increase flexibility, strengthen and, most importantly, restore function. Therefore the initial goal of the physical and/or occupational therapist is to evaluate an individual’s strength, posture and flexibility as well as to determine which activities may be contributing to an injury and causing pain. The therapist then can give expert advice on how to reduce the stress placed on the tendons that will generally include proper seating and posture instruction as well as providing tips on making simple adjustments at home and at work in order to avoid aggravating activities. As part of the treatment, the therapist may use treatment ‘modalities’ such as ultrasound that provides deep heat to warm the tissues - improving blood flow and relieving pain. An exercise programme is usually initiated on the first visit, but is recommended in a very specific manner. Most often, the exercises include only a stretching programme because strengthening is not recommended until the tendons become less inflamed and less painful.

In the case of tendonitis at the wrist, either the physician or the therapist may recommend a splint for the wrist. The splint provides rest for the tendons and relieves the pressure from the overworked muscles.

If the symptoms persist despite treatment, surgery may be an option. In the case of post-operative rehabilitation, the focus again is on reducing pain and restoring strength, flexibility and function.

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BOOK REVIEWS

The Polio Paradox – what you need to know

By Richard L. Bruno, PhD.

ISBN: 0-446-52907-9
USA: AOL Time Warner Co. 2002

Bruno gives a very detailed account of the history of Polio, and explains with the help of diagrams, how the poliovirus entered the body and attacked the anterior horn neurons. He claims that research has shown that all the neurons in the body, including the brain, were affected when attacked by the poliovirus, but that the body’s immune system repaired about 40% of them. He explains how the neighbouring neurons grew sprouts to reach those muscle fibres who were ‘orphaned’ when their motor neurons were killed, these sprouts ultimately activated about sixteen times more muscle fibres than were connected to the motor neuron originally. So taking into account that you have only 60% of the motor neurons you were born with, and these are damaged, smaller, over sprouted and overworked, no wonder Polio Survivors are having difficulties as they grow older!

Under typically ‘Americanised’ headings, he details the spread of the disease in the USA and introduces us to a series of paradoxes, such as “Polio attacked mostly infants early in the twentieth century. But infants became less affected and teenagers more affected as the decades went by.” He goes on to document and explain the paradoxes, and brings us on quite a horrific journey of how polio patients were treated, and in many cases abused, in hospitals, how they were alienated when they went home, ridiculed at school and college, and how they developed Type A personalities in order to compensate for their disabilities.

He goes on to discuss all the symptoms that are associated with PPS, and details the research carried out, and the reasons these symptoms occur. He makes good use of quotations from patients at the Post Polio Institute, to illustrate his points.

He speaks at length about the psychological difficulties in coming to terms with having to go back to using canes, crutches, wheelchairs, braces, etc., and deals with this issue in an empathic but firm manner. There is no room in this book for pity or sympathy for the Polio survivor.

He follows this up with the management of PPS, and talks about the Golden Rule that underlies all activities carried out by Polio Survivors: “If anything causes fatigue, weakness or pain, don’t do it!” He says that “Polio Survivors can do almost anything – once”, an analogy that I found to be very true in my own case. He has some very good Precepts which he uses to remind Polio Survivors to look after their bodies, such as “Conserve to Preserve”; “Work smarter, not harder”; Brake before you break”; “A crutch is not a crutch”; and “Walls, furniture and spouses are not assistive devices”.

Finally, Bruno goes on to outline the similarities between PPS and the chronic fatigue syndrome, ME, outlines the research carried out in this area, and states that the programme carried out in the Post Polio institute is equally effective in managing PPS, ME and chronic pain.

He finished the book with, what he calls the Polio Survivors Credo:

There is no more time to waste.
I will listen to my body.
I will listen to my heart.
I will care for myself as I have cared for others.
I will discard “normal” to ensure my ability to function and maintain my quality of life.
I will thrive in spite of PPS by embracing who I am:
A Polio Survivor

I could not put this book down, even though I found it quite disturbing in spots. The Americanised headings were a bit much, but it was very informative. This book is not for the faint-hearted, but does cover every symptom that could be experienced by Polio Survivors, why it happens, how to manage it, and how to come to terms with life as a Polio survivor! - Paula Lahiff

One of our Own

By: Hugh Weir

ISBN: 0946538 38 7
Published by: Ballinakella Press

Hugh is one of our members, and has written a fascinating book about his life and times. He traces his family back many centuries, and goes on to describe his childhood both in England and rural Ireland, his schooling in Enniskillen, his time in the British army, his studies for the ministry and his time as a teacher, his successes and failures in business, his travels around the world, and his interest in the Church and social and community activities.

What I really liked about this book was the way it named all his neighbours and friends in the various places in which he lived. You are bound to come across one or more people that you know, or recognise the places he describes so well. The book is interspersed with lovely pen and ink drawings by Hugh himself, and it is an inspiration to anyone, especially the Polio survivor, as his disability has never held him back in anything he ever wanted to do.

This is lovely book - congratulations Hugh, I hope you are taking life a bit easier now!

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Office News ...

Congratulations to Aisling, our Administrator, on the birth of her beautiful little baby girl. Grace Catherine was born just after the last newsletter went to print, and she came with Aisling to the AGM, where she was much admired and very attentive to the goings on! Aisling is due to return to the Office on August 12th. Jennifer, who held the fort so well in her absence, will be with us until September 6th, to facilitate a smooth handover. She will then be leaving to complete her Masters in University and we wish her well. It is presently planned the Victor will be with us until December.

It has been very busy in the office over the last few months. Among other projects we have organised our new stationery and information literature, completed the process of incorporating the Group as a Limited Company and finalised the Group’s accounts and Annual Report. New information literature is currently being circulated to all General Hospitals, Libraries and Citizens Information Centres throughout the country. The Health Boards have agreed to assist us in distributing posters and leaflets to all main Health Centres, and we will also be sending out 2 posters to all our members and requesting you to have them displayed in your local areas, i.e. Town Hall, Post Office, Community Centre, Church Hall, etc.

We have been in contact will all Health Boards regarding funding, and we have sent a copy of our Annual Report and Accounts to all Health Board CEOs and Directors of Disability.

Before the General Election, we mailed every TD and Senator in the country, and our members also contacted their local representatives. Dozens of letters were received into our office from various political representatives following this campaign. It certainly created considerable awareness regarding the situation of Polio Survivors.

Finally, at last the rewiring of the Carmichael Centre has recently been completed and we will now be able to adapt our office to suit our needs.

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News from the Regions ...

This photo of the Regional Reps was taken after their meeting in Portlaoise, April 2002. If you have any queries, or would just to make contact, phone numbers are on page 20.

Back Row (from L to R): . Joan Bradley (ERHA region), Paula Lahiff (NWHB region), Paddy Fitzpatrick (MHB region), Joan Naddy (SEHB region), Mary McEvoy (MHB region).

Front Row (from L to R): Donal Walsh (SHB region), Maureen O’Sullivan (SHB region), Noreen Mullane (MWHB region), Barbara McDonagh (WHB region). Missing from the Picture Jackie Minnock (NEHB region).

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Welcome to new regional reps

Paddy Fitzpatrick will be replacing Mary McEvoy in the Midlands Health Board region. Mary has her hands full with the important job as treasurer, and has asked Paddy to take over as regional rep. We would like to thank Mary very much for her great work as regional rep in the Midlands HB region for the past three years. Thanks to her, the Group has a very good relationship with the Manager - Physical and Sensory Disabilities, and has kept the Post Polio Support Group high on the agenda in that region.

Monica Cantwell has taken on the job as regional rep for the East Coast Area Health Board. Joan Bradley had been filling in in this position, and hopefully with Monica on board, her workload will be lightened somewhat.

We hope that Ann O’Kelly Guerin, will be able to take over from Joan Naddy, in the South Eastern Health Board region from September next. Joan is unable to continue as regional rep due to family commitments and we would like to thank her very much for her work over the past year. If any members from this region need assistance in the meantime, please phone head office.

We would like to warmly welcome the three newcomers on board, and thank you very much for offering to help. All contact names and phone/ fax numbers are to be found on page 20.

Maureen O’Sullivan and Donal Walsh, the Southern Health Board regional reps invite members in the Cork/Kerry to an Awareness Weekend on 21st and 22nd September in St. Dominic’s Conference Centre, Cork. (See Advert on page 19).

The organisation of a stress-management week-end for the members in the Western and North Western Health Board regions is in hand. We have secured some funding from the NWHB and are awaiting confirmation of funding from the WHB. More about this in the Autumn newsletter.

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MENUPLAN TO BEAT FATIGUE

Eating small regular meals spaced throughout the day will help to improve your energy levels.

ENERGY BREAKFAST

Wholegrain cereals; baked beans on wholegrain toast; a poached egg; a fruit smoothie; fresh juice or fresh fruit and yoghurt. At weekends make brunch dishes, such as scrambled eggs with smoked salmon or a kedgeree. Eating well in the morning replenishes essential nutrients and energy. A breakfast that is based on carbohydrates enables you to perform better, mentally and physically. Fresh or dried fruit, wholegrain cereals, muesli, porridge and wholegrain bread all give sustained slow-release energy. They help you fight fatigue better than fatty foods or highly processed sugary breakfast cereals.

LUNCHTIME REVIVAL

A small protein-based meal revives flagging energy—have a bowl of bean and vegetable soup with a wholemeal bap; prawns with noodles; fish, chicken or meat; salad and pitta bread; chicken or tuna salad sandwich on rye bread; grilled fish or chicken with spinach, with mixed salad; baked mushrooms with coriander pesto and feta with wholegrain bread.

EVENING SUSTENANCE

Choose a meal that includes carbohydrate, such as a baked potato with vegetable or meat chilli; smoked mackerel with mashed potato and steamed green vegetables.

SNACKS AND DRINKS

Eat frequent sustaining snacks at regular intervals—unsweetened popcorn; oatcakes or rice cakes; fresh fruit; raw carrot sticks. Sip water throughout the day (aim to drink at least eight glasses of water every day).

Reproduced from: Food for your Body—How to look and feel the best. Published by The Readers Digest.

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