The Survivor Newsletter: Autumn 2002

From The Editor...

Dear Friends

Do you like the new layout of our newsletter? All constructive suggestions welcome! I hope you find this issue informative and interesting. Hugh Hamilton, our Fund Raising Coordinator has asked me to remind you that our Christmas Cards are now on sale (€ 5 for pack 8 cards). Order Form is enclosed with this newsletter. Maureen from Cork invited me to participate in the SHB region stress management week-end, where lots of interesting and unexpected things took place! (page 8). We have an articles on Keep Polio Bodies Warm (page 3), and Living With a Hip Replacement. (page 5), as well an interesting research piece on a Study of Sleep in Survivors of Polio (page 7). Jim gives us news from Head Office (page 3), and also please note that we have a new Area Rep for SEHB Region, Ann O’Kelly Guerin – welcome Ann! The funds raised from the mini-marathon continues to come in, and the survey is under way. Don’t forget, this is your newsletter so your news, views and letters are always welcome

– Paula Lahiff.

FUND RAISING NEWS

Beautiful CHRISTMAS CARDS designed by members and friends of the Post Polio Support Group are now on sale. The cards are very reasonably priced at €5 per pack of 8 cards (incl. Postage).

Image of Chirstmas Cards

Please support this very important fund raising effort by buying our cards and by asking your friends to do likewise. The money raised from this project will go towards research/survey, OT, Physio, Housing Grants and Home Heating Grants for our members in need. Please send completed order form (enclosed with the newsletter) and cheque/PO to Victor Purcell at Head Office to get your cards on time. PLEASE DO THIS AS SOON AS POSSIBLE AS WE WANT TO BEAT THE CHRISTMAS RUSH – and believe it or believe it not, it is only about 70 shopping days to Christmas!

The Cards will also be on sale at the following outlets and days over the Christmas period. If you have a few hours available to give a hand, please phone Head Office:

Merchant’s Quay, Cork (15/16 Nov. and 6/7 Dec.)
Dunne’s Stores, Sligo (15/16 Nov.)
Superquinn, Sutton Cross (8 and 22 Nov.)
Liffey Valley (15/16 Nov.)

FROM THE CHAIRPERSON …

Unfortunately, this year our summer seemed to have gone on its "holidays elsewhere", although the recent few weeks have not been bad, and I hope that most of our members were able to get some sort of a break.

Our lobbying campaign both before and after the General Election created great awareness among our political representatives throughout the country. We received nearly 200 replies from TD's and Senators. Also following this, there was a number of questions asked in the Dail both before and after the Election relating to the situation of Polio Survivors. At the suggestion of the Minister for Health, Joan and I recently met with the Principal Officer (Physical & Sensory Disabilities, Dept. of Health.) and some of his Officials. It was made clear to us that they were there to listen and report back to the Minister regarding the meeting. We felt that it was a very successful in-depth, long meeting covering all aspects of the work of our Group. The Principal Officer told us he would be reporting back in due course.

The main stage of our Survey is now underway. Over 230 members have agreed to participate. This detailed project will be ongoing over the next few months. So if you are taking part you may not be contacted by your Occupational Therapist for a while yet, as it will take time to get around to all the participants.

Our new Information Leaflet & General Poster have been circulated throughout the country to all main Health Centres, General Hospitals (O/P & Physio Depts.), Public Libraries, and Citizens Information Centres. We will shortly be distributing our new information booklet on The Late Effects of Polio -- (for the Medical Profession) to all the Medical Libraries, Nurse Training Schools and General Hospital Libraries throughout the country.

Our Administrator Aisling is leaving us shortly for personal reasons, and we wish her well in the future. The Board has decided that the Group now needs to appoint a full time Administrator. Consequently we are now in the process of filling that position.

Next year our Group will be 10 years old and it is also the European Year of the Disabled. Have you any ideas as to how our Group might celebrate this occasion?

Jim

KEEPING POLIO BODIES WARM

Reprinted from Post Polio Solutions – PPN WA Inc

Cold Intolerance

It is well known that cold intolerance is a common feature of surviving polio. It is also well documented that this can become an increasing problem as we get older. This appears to happen in at least 41% of Polio Survivors. Why does this occur and what can we do about it?

Firstly if we go to some basic physiology, looking at the action of muscles, we can see that muscular action is necessary to return venous blood up the leg to the heart. This is called the skeletal muscle pump. When the muscle contracts blood is squeezed up the vein and one-way valves stop it flowing backwards. Where there is muscle wastage from polio this action is less effective. If we stand or sit still without moving, blood may collect in our feet and lower legs causing swelling and a drop in blood pressure (even fainting).

Climatic temperature also influences size of blood vessels. Heat opens them up allowing more blood to reach the skin surface areas giving a redder hot look, also sweating and evaporation, which helps to cool the body. Cold closes the vessels restricting the flow to capillaries to conserve heat giving a paler appearance to the skin. This function is controlled by the sympathetic nervous system.

In Polio Survivors, the nerves that control this sympathetic function may have been damaged by polio, thus not allowing them to shut off the blood supply when it is cold. So precious heat is lost, the cold decreases what muscle activity there is, and the ‘purple cold foot/leg syndrome’ appears. In fact, cold constricts all nerves and muscles. Seventy five percent (75%) of your muscle strength is lost when the temperature drops to below 20ºC.

What can we do about it?

Obviously, the first requirement is to get some warmth back. Creating a warm environment achieves this. Warm yourself up by external heat, i.e. warm bath/shower/foot bath; electric blanket or just getting into bed. Most polio limbs are warm once they have been in bed long enough. The secret is to keep them warm when you get up. Polyproplene is a silk-like plastic material that holds heat in but allows sweating out. Wrap up well to keep heat in. Socks, leggings, long johns, track pants made of this and similar materials help. Be warned – you must be warm first, when you put them on.

CONCERT IN THREE STRINGS – Jack Reimer

(Reprinted from ‘Signs of the Times’ August 2002)

On November 18, 1995, Itzhak Perlman, the violinist, came on stage to give a concert at Avery Fisher Hall at Lincoln Centre in New York City. If you have ever been to a Perlman concert, you know that getting on stage is no small achievement for him. He was stricken with polio as a child, so he has braces on both legs and walks with the aid of two crutches.

Perlman walks painfully yet majestically across the stage to his chair. He sits down slowly, puts his crutches on the floor, undoes the braces on his legs, tucks one foot back and extends the other foot forward. Then he bends down and picks up the violin, puts it under his chin, nods to the conductor, and proceeds to play.

That November night, however, something went wrong as Perlman began to play. Just as he finished the first few bars, one of the strings on his violin broke. You could hear it snap – it went off like gunfire across the room. The audience thought that he would have to get up, put on the braces again, pick up the crutches, and limp his way off stage either to find another violin or else to get another string for the violin he was using.

But Perlman didn’t leave. Instead, he closed his eyes for a moment, then signalled the conductor to begin again. When the orchestra began, he began too. And he played with a passion and power and purity that the audience had never heard before. Anyone knows that it is impossible to play a symphonic work with just three strings. I know that, and you know that, but that night Itzhak Perlman refused to know that. You could see him modulating, changing, recomposing the piece in his head. At one point, it sounded like he was de-tuning the strings to get from them sounds that they had never made before.

When Perlman finished, there was an awesome silence in the room. Then people throughout the auditorium rose. We screamed and cheered, doing everything we could to show how much we appreciated what he had done.

He smiled, wiped the sweat from his brow, and raised his bow to quiet us. Then he said, not boastfully, but in a quiet, pensive, reverend tone, “You know, sometimes it is the artist’s task to find out how much music you can still make with what you have left”.

This little gem was sent to me by Joan Bradley – thank you Joan.

NEWS ROUND UP

Post Polio Group in Boston Mary Ronayne, a member of the Greater Boston Post Polio Association who came to the Stress Management Week end in Cork, suggests we have a look at their website http://www.gbppa.org

Disability Legislation Consultation Group:

As part of the consultation process on disability legislation initiated by the Government earlier this year, the National Disability Authority is co-ordinating the Disability Legislation Consultation Group (DLCG). You can give your views in two ways:

Attending a meeting and / or
Commenting in writing

Meetings are to be held throughout the country and if you are interested in attending, please contact: Jiff Stewart, National Disability Authority, 25 Clyde Road, Dublin 4.

Tel: (01) 6080400
Fax: (01) 660 9935
Email: jstewart@nda.ie

LIVING WITH A HIP REPLACEMENT

Tips for success from Dr. Jennifer Burton

(This Article first appeared in The Bulletin, and is reprinted with kind permission from the British Polio Fellowship)

Preparation:

This is vital. Discuss with your surgeon and make sure s/he knows the extent of your disability, particularly if operating on the ‘good’ leg. Sometimes this operation can cause shortening which may in fact be an advantage, but not more than abut 1cm; otherwise the muscles become lax and may cause dislocation. There are two main types of replacement. The cemented one enables full weight-bearing post operatively, first with zimmer frame and then two sticks. The uncemented type allows only partial weight bearing with zimmer and the crutches. Your surgeon will make the decision on what is the best operation for you. Your hospital should have a written guide to hip replacement surgery with comprehensive advice for pre-and post surgery.

Get yourself as fit as possible:

Lose weight, stop smoking and do pre-op graded exercises on both legs as advised by the physiotherapist. This especially important if you have not been mobile because of pain: the muscles will have become weaker and you will need to have your polio leg as good as possible. It will have more work to do. At the same time, learn to pace yourself, which people with late effects of polio should do anyway. Constipation may become a problem. Try to find a solution before going into hospital, where painkillers and immobility will make it worse.

Get your home ready – this takes quite a time, so plan ahead:

You will not be permitted to bend the replacement hip to less that 90º. This means that beds, chairs and toilets may need to be raised. Make allowance for the flattening of cushions, mattresses etc., when used. Raisers can usually be borrowed from OT departments. A set of graspers (helping hands) is helpful as it is amazing how many things insist on dropping to the floor. Kitchen shelves will need to be rearranged so things you need can be easily reached without bending or climbing on steps. Bedroom drawers may also need reorganising so you can reach clothes you need.

You will be on two sticks or crutches so unable to carry anything. A wheeled trolley is well worth having, which you can use instead of your sticks when you carry things, particularly for mugs of tea and coffee.

There are aids for dressing such as for socks and tights. Dr. Burton found the fabric one best, a single, not a double one. Graspers are good for pants. Slip-on shoes are best, or for lace-ups, substitute elastic shoe laces and use a long shoehorn.

If you will be on your own a lot, think about how to let people in, e.g. phone entry or key safe. Home carers will need entry.

Pets may need to be fed on a higher surface. You may decide to have them looked after a little longer after your discharge from hospital before having to cope again.

When you get a date for admission:

Stock up with easily prepared foods, e.g. ready meals, long life milk, cuppa sours. Plan for your discharge, as you will need nelp, for example, personal care, preparing meals, housework, gardening, shopping (you may decide to use the internet). Inform your social services department of your impending hospitalisation.

In hospital:

Assume the staff will not know about polio so take in information booklet for Health Care Professionals. You will be nursed on your back after surgery with a wedge between your legs, a drip in your arm, drains from the wound, possibly a urinary catheter and a PCA machine which enables you to give yourself pain relief when you want it. You will be got out of bedthe day after surgery if the x-ray of the hip is all right. You will sit up and then start walking.

Physiotherapy:

The physiotherapist may try to get you to lead with your unoperated leg, which may be your weaker leg. They have to be reminded that it is very difficult if not impossible and that you have to lead with your operated leg. They will show you various exercises. Pacing is important.

Getting home:

Accept an ambulance: getting in and out of a car with a hip replacement and a polio leg is difficult at first.

A hip replacement is a major operation. It will make you feel very tired for several months. Don’t be disheartened if progress is slow. It may be a year before you get the full benefit of the operation, but you will wake up from your operation free of the pain that has been preventing sleep. After three to four months you will start feeling much better. Walking may take quite a time to get back to your previous level. It may be worth trying to arrange some physiotherapy at three months to help you with graded exercises and advice on walking.

Dislocation:

This complication is a particular worry for polio people. It is so important to do the correct exercises and to avoid movements that can cause this, such as crossing your legs or ankles or twisting on the operated leg. Dislocation is very painful and usually requires readmission for further surgery, without which further dislocation may occur.

Epidural:

This is a form of local anaesthesia where the anaesthetic is injected into the spine into the space outside the sack that contains the nerves in cerebrospinal fluid. Everything below the waist will feel numb. It has the advantage that you are awake and breathing is not affected. You do not have the side effects of a general anaesthetic. You are usually given a sedative and oxygen as well. However, a hip replacement takes several hours and is noisy!

Having had a hip replacement myself, I concur with everything that Dr. Burton says. It is wonderful to be pain free and worth all slight inconveniences as you recover. Don’t forget that if you have to have a general anaesthetic, tell the anaesthetist about the difficulties Polio Survivors may have.

If you have any tips, encouragement or information to give to anyone who has to have a hip replacement, please let us know and we will print it in the next newsletter – Editor

THE REFERENDUM ON THE NICE TREATY

"We have been contacted by the Disability Alliance for Europe. They are a group of concerned individuals and organisations within the disability sector in Ireland who have come together to promote a Yes vote in the forthcoming referendum on the Nice Treaty. If you would like to contact them their details are: Phone 01 205 7385, Fax 01 205 7381, email disabilityallianceforeurope@eircom.net

LETTERS

Hello,

I have been in touch over the past number of months in relation to a new disability website we are developing. This website, www.disability.ie is currently live, while still under construction. At the moment we are working to create awareness of the website. In this capacity I am informing the disability groups around the country, requesting that you make your members and colleagues aware of the existence of the site. Any feedback you can offer will be gratefully appreciated.

Should you have any queries please do not hesitate to call. Our office number is 01 6016344.

Regards, Cathriona
Disability Information Ireland
Acol House, The Square, Maynooth.

CROSS-CULTURAL STUDY OF SLEEP IN SURVIVORS OF POLIO

By Dr. Elizabeth Ellis

(This article appeared in Network News Issue 54 June 2002 and is reprinted with permission of the PPN (NSW) Inc.)

The University of Sydney, School of Physiotherapy, is very grateful to the Post-Polio Network (NSW) for its cooperation in this first ever cross-cultural study of the sleep profiles of survivors of poliomyelitis in Australia, Canada and New Zealand. The research project looked the history of poliomyelitis as well as the current daytime function and sleep patterns in people who have had polio. Sleep patterns were investigated because they are essential to being able to function well in the day, as well as to general well being and overall health. Five hundred members of the Post-Polio Network were sent a questionnaire and asked to volunteer to complete it. Ninety-six pairs of responses were matched for age and sex and used for this initial analysis. At the Network’s Seminar on 2 March 2002, the following finds were presented:

Research questions and answers:

What is the incidence of disturbed sleep in people with PPS? And is this different to the normal population matched for age and sex?

The proportion of people classified as having sleep disturbances was greater in people who had survived poliomyelitis (26%) than in the control group (15%)

What proportion of the disturbed sleep is caused by breathing disorders?

The proportion of people classified as having sleep disturbances who also had evidence of breathing problems during sleep was greater in the people who had survived poliomyelitis (20%) than in the control group (14%).

What proportion of the breathing disorders could be contributed to by PPS? (i.e. respiratory muscle dysfunction vs obstructive sleep apnoea).

More of the polio group reported to having breathing problems than the control group. However, the proportion of people who had breathing problems, and who had difficulty breathing during sleep, was the same for both groups (4%). In addition, there was no difference between the polio group and the control group on the severity of the symptoms of breathing problems in those that had them. Consequently, less of the sleep-disordered breathing could be explained by breathing problems in the polio group than in the control group.

What factors are strong predictors for disorders in sleep caused by PPS?

The link between disorders of sleep in Polio Survivors appears to be more related to their history of polio than any specific compromise of their respiratory system. Sleep studies may be useful in the identification of sleep disordered breathing in subjects displaying evidence of sleep disturbances and would help identify the cause in individuals.

This exciting project is a collaborative effort between Prof. Elizabeth Dean in Canada, Margot Skinner in New Zealand and Dr. Elizabeth Ellis in Sydney. The survey was managed by Ms. Helen Papadopoulos who graduated with Honours from the university of Sydney in May 2002.

We would like to hear from any of our members who have sleep disturbance difficulties, and how they have dealt with them. – Editor

FUND RAISING NEWS

We have now raised €7,600 from the mini-marathon, which is pretty good for our first effort, and hopefully, we can expand on it next year. Again Many thanks to all concerned!

Apart from our Christmas cards, about which you can read elsewhere in this Newsletter, we are working on a number of other projects for our fund-raising. However, please try and get together with some friends to organise a coffee morning or small event, which would help us to reach our target.. Thank you. Hugh Hamilton

Stress Management Weekend in Cork – and more …from Paula Lahiff

As usual, Maureen O’Sullivan had organised her Stress-Management Weekend down to the last detail. Barbara McDonagh (regional rep with the WHB regional) and myself were delighted to accept Maureen’s kind invitation to attend. It was good to meet many old friends and welcome some new members. I can surely tell you that the cead mile failte is alive and well in Cork!

Firstly we had a talk from the OT Linda who demonstrated aids and appliances. She had everything from the ‘old reliables’ to the new gadgets. I especially liked the trolley (no polio survivor should be without one) and the yoke for scratching your back and washing in between your toes! It was a bit disconcerting to hear that the so-called ‘adjustments’ in the health board funding will mean that these items will be much more difficult to access from now on. Susan will be carrying out our survey visits in the Southern Health Board region – she is a lovely person and very well informed.

Then we had a very interesting talk from the director of the Cork Citizens Information Service. She had all the information at her fingertips on a myriad of subjects, you always learn something new!

The tips swapped and experiences shared around the lunch table were invaluable, and the good humour and encouragement given to each other, only to be expected from a Polio Survivors group! This to me was the real benefit of the week-end, people felt they weren’t alone in their experiences, and were able to get tips and encouragement about new callipers, travel abroad, going under anaesthetics, sympathetic doctors, and I could go on …

In the afternoon Maureen asked me to tell the members about what was happening re our Survey and lobbying etc., and to ask for everyone’s assistance to sell our Christmas cards and support other fund-raising efforts. It was a bit disturbing to hear of waiting times involved when attending the Clinic at Beaumont hospital.

Then we were given into the ‘care’ of Anne Alcock, psychotherapist, who came across as just being so aware of us as individuals each with their own difficulty. She showed us many stress management techniques, how to do progressive relaxation, and best of all, how to do hand reflexology on ourselves. We gave each other shoulder massages, and practised ‘belly breathing’ and yoga techniques – the prune and the lion (don’t ask!).

Photo of a Fire Engine

Then came the unexpected bit! When going down to tea, four of us got stuck in the lift. We pushed every button but that lift would not budge. We were in good spirits at first and we could hear all the encouragement from up above. Eventually two units of the fire brigade arrived with their sirens blaring and the firemen went up on the roof and down to the basement, but that lift would not budge! Then just as they were about to cut us out, the crowbar was used one more time and the door opened. A huge fireman jumped down into the lift and tried to get us to stand up on his back – but we explained that we had only four working legs between us, so with that he told us to put our arms around his neck, and he lifted us all out one by one – to great cheers all round!

The weather was wonderful and the atmosphere and welcome by the staff at St. Dominic’s were lovely. The lift episode, while a bit daunting at the time, only brought out the best in people, and sure we never would have got a squeeze from the best looking fireman in Cork any other way!

Thanks to Peggy for the photo of the fire engine just to prove that it was all true.

DISCLAIMER:

Whilst every care is taken to ensure accuracy, the Editor and the Board can accept no liability. The views expressed in this newsletter are not necessarily their views.

ADMINISTRATOR – Aisling O’Leary
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

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

AREA 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.