Polio News, Newsletter of the Post Polio 
Support Society NZ (Inc).

Conference edition, November 2006

In this issue

President’s message
QE Health’s future
New Editor
Survivor’s first rehab experience
Conference reports
Mini-conference
Recovering from hip joint replacement
Branch news
Personal Stories
Disability Helplines
Medical Matters
Book review
Directory

Editorial

Dear Friends,

This will be my last contribution as editor of Polio News. I have asked the Board of Management to find a successor as my health has deteriorated to such a degree that I am finding it difficult now to carry out my editorial duties efficiently.

There are many people I must thank. We have a dedicated production team which will 1 am sure continue to produce interesting and informative newsletters. It includes the members of the Christchurch support group, who come together at 11 Wyn Street each three months to prepare the mail-out. Steps have been taken to ensure that this arrangement continues. These meetings have been happy occasions and emphasise the benefits to voluntary organisations working to further the aims of their society.

Then there are the many branch correspondents whose regular contributions keep the twenty-two widely spread branches in touch with each other and with the board.

Individual contributions by way of personal stories and comments on issues have also been important as part of the glue holding our society together. My thanks go to all these members and to the many overseas polio newsletter editors and correspondents. We have a large group of overseas contacts and I hope that this will continue.

Thanks are also due to the inimitable JB for taking over the address list and to Richard Liddicoat for organising the lay-out and printing. With all this help my function has been a relatively easy one of co-ordinating the contributions.

I have greatly enjoyed my time as editor. It has been a joy to work with our many overseas contacts and to share their experiences. What a huge amount of information on PPS has been produced over the last twenty-five years. The descriptive and research material produced in this time is considerable and of great value. What a pity our health authorities don't pay attention to it. Progress in helping polio survivors depends, of course, on funding, and here we run into a brick wall.
The amount of money required to provide significant help for polio survivors is not great, but if it were available, it would make a huge difference to the lives of a large group of the New Zealand disabled community. We have struggled to put our needs to health authorities, but sadly polios are a disappearing species. Our ranks are thinning and before long there will be few to carry on the fight.
I retire with some aims unfulfilled. For example, our quest for a clinic has been unsuccessful. An excellent facility is already in existence in Rotorua, but an inequity of access to it remains. We have not yet managed to have this patent injustice recognised.

My very best wishes to each and every member. Keep working for a forward-looking society. One day justice will prevail.

Denis Hogan

President's Message

Hello All,

Sympathy & Get Well Messages:

Changes come thick and fast and sometimes when we do not need them or when least expected. I refer at this time to those of ill health or those who have passed away. At this time we remember Group Leader Diane Jackson from Dunedin who recently lost her husband.  Words to Diane seem so inadequate at times like this, but we remember the good times shared around the barbecue at our first meeting in Otago each year, when Diane’s husband Dick acted as master of ceremonies, doing the cooking and being the perfect host.

If there are any others, please include yourselves in this message and keep us informed so you may be included in our thoughts.

Congratulations:

We extend these to Shirley Hazlewood QSM (Kaponga) who received recognition for her work in the Taranaki area.  Well done Shirley.  I spoke with Shirley at Wellington where she proudly wore her Queen’s Service Medal for all to see.

Board Face to Face Meeting: 

This was held on Friday afternoon and did the normal tidying up of the last tele-conference meeting and the additional general business that had accumulated since.

Annual Meeting:

This ratified the President’s Report and the Audited Accounts, then proceeded to elect a new Board of Management, confirm Subscriptions for 2007/ 2008 and appoint an Auditor. It was sad saying goodbye to Board Members Doreen McCoard & Raylee Murphy, and then in another breath welcoming Sue Kerr of Picton. 

We also acknowledge the new Polio News Editor Jim Webber, of Paraparaumu, who is taking over the reins from one of our longest serving and respected members, Denis Hogan. 

Denis has been at the forefront of the negotiations for our Society in so many ways that pages could be filled with his often one-person war against all the odds, including the much requested ‘Centre Of Excellence’, and many tributes were expressed by the Board Members.

The new board met briefly to set teleconference dates and to consider setting in place a policy to host a second face to face Board Meeting in March 2007.

Much has still to be done re the arrangements and costings but it should be a desirable addition to our annual format.

Claudia Mushin & Cormac Brennan were appointed to carry out some investigative work on this and report to the first teleconference meeting. Claudia and Cormac are also to be Conference organisers for September 2007.  A ‘Futures Committee’ was appointed with Philippa McDonald as chair and assisted by Jim Webber.  Both sub committees have power to co-opt as and when required to handle their business.

Friday Evening following the AGM we enjoyed some time dining and talking and relating experiences of being a person with polio. Such things as ages and where one lived all contributed to the storytelling.

Listening in on the telling of these was Jeannie Warnock, a member of the Duncan Trust and great grand-daughter of Sir Thomas & Lady Duncan. Jeannie had been invited to get first hand experience of people with polio and their efforts that have got them where they are today.

This was all part of our remembering that 50 years have elapsed since the Salk Vaccine first arrived in this country.

The Wilson Home will have celebrated a similar event in Auckland with polio people from that region. I have written a letter to Alan Blackburn, Chair of the Wilson Home Trust, extending on behalf of our society good wishes for their special day of celebration to be held in November this year. 

Reference to the ‘Wilson Home Bequest’ is written up in the ‘First Twenty Five Years of the Crippled Children’s Society’, a book available from most libraries.

Saturday Conference:

This was well attended in Wellington on September 9. Keynote speakers were Professor Horne – Orthopaedic Surgeon on Joint Replacement;  Jarrod Ria – Rehabilitation Specialist explained in detail the need to become mobile again following Professor Horne’s work. He also highlighted some of the things that should not be done that would undo the work of the surgeon.

After lunch we had talks by Chris Paul (Arthritis Foundation NZ and Wairarapa Educator/Field Officer) and  Lizy Rombel (Falls Prevention Officer, Sport Wellington Region), who jointly explained the need to exercise to control the sensations that make us aware of falling. The use of PowerPoint computer imaging by all the speakers left little to wonder about, so detailed were the images shown.

Finally to all who act as  the ‘front-persons’ for our groups around this land I send to you my personal greeting and ask you to accept my gratitude for the effort you put into keeping the grass roots members updated in your regions.  With close to 800 members spread around these two islands it is not physically possible to get all the people together in one place at one time, however desirable that would be.

It would allow us to demonstrate to the Ministry of Health and District Health Boards that we are united in our desire to be recognised and treated as individuals. In many cases, we have serious health issues that are not well known and not well considered or in fact even understood by them to be of importance.

Take care and keep safe  
Ray Wilson, President.

QE Health future:
Partnership with Southern cross?

The old lady of Lake Rotorua, Queen Elizabeth Health, could receive a major upgrade over the next two years.

A proposed merger between QEH and Rotorua’s Southern Cross hospital is being assessed by both health providers.  They have signed heads of agreement.  If the joint venture goes ahead, part of the vision is either a rebuild or a makeover for QEH and a new surgical centre on Southern Cross’s existing Otonga Road site.

Rationalisation of surgical services is the focus of the proposal.  Surgical work from QEH would move to a new facility at Southern Cross’s Rotorua hospital.  QEH, which operates in ageing, 1940s-era buildings on a spectacular lakefront site, could develop greatly as an international medi-spa with world-class muscular-skeletal rehab facilities.

Overall the number of beds would be reduced.  At QEH, where existing beds are under-utilised, there would be a greater emphasis on day-care facilities.  There is also potential for an accommodation venture to be build on the lakeside land which is owned by Ngati Whakaue.

QEH chief executive Ben Smit says the proposal would see considerably more staff  working at the redeveloped complex which at present offers a wide range of rehabilitation services.  They include physiotherapy, orthotics, counselling, occupational therapy and a range of spa services some of which use the thermal mineral water and mud resource on the site.

Dr John Petrie, consultant in rheumatology and rehabilitation at QEH, says the joint venture with Southern Cross mainly concerns the rationalisation of two private surgical functions.

“The rehabilitation aspect remains on site here, in whatever form it may take -- which is still a matter of conjecture.  The provision of rehabilitation services is heavily dependent on District Health Board funding and also on the owners of the land.

“We can be sure that the level of DHB funding is not expected to increase in the forseeable future.”

Post-polio and QE Health – the full story

There is no immediate threat to post-polio treatment at QE Health.  But nor is there any improvement in sight for the present restricted access for post-polio syndrome patients.

QE Health used to be funded directly by the Ministry of Health.  Then the Ministry divested that funding function to the District Health Boards.  Gradually over the past three years DHB funding assistance to the QEH rehabilitation programmes has been greatly reduced.

Auckland and East Coast have withdrawn.  There is no coverage from South Island DHBs.  There remains some funding coverage from Central, Waikato, Bay of Plenty and Lakes regions.

What funding is provided by DHBs is earmarked for rheumatology rehabilitation programmes -- and polio survivors with post-polio syndrome are included in these programmes but with their own specific treatment focus.

“The future for post-polio patients is compromised by DHB restrictions on funding,” says Dr John Petrie.  “It depends entirely on how the DHBs view the best use of their funding for rehabilitation services.”

So what can organisations like the Post Polio Support Society do?

“Lobby the DHBs” says Dr Petrie.  “The route to QEH treatment is via a DHB funding stream.”
This could be by individual arrangement with the DHB or by  a DHB negotiating with QEH to provide treatment for a number of post-polio patients per year.

Of the future, Dr Petrie believes that private arrangements, self funding, will play a stronger part in the provision of rehabilitation services at QEH.

Some patients, notably from Auckland, pay for their own treatment -- self-funding.  The rates for this, GST inclusive, are $331.88 a day which covers at least four hours treatment per day, a rest area for day patients, and lunch. 

Self-funding patients can also opt to stay in Ward 3 at QEH or at the QE Hostel in another part of the city.  This costs $78.75 per day and includes breakfast, lunch and dinner.  There is a range of motels close to QEH and at least one offers a reduced “hospital rate”.

New editor for Polio News

Jim Webber of Paraparaumu (pictured) is the new editor of Polio News, the Society's quarterly newsletter.  He is a well-known journalist who retired from active magazine and newspaper work in 1996.

Jim and his wife Diana Ferris lived in Kawhia for 20 years till recently and they founded Kawhia Regional Museum Gallery.  They live in Paraparaumu now and Jim co-ordinates the Waiorua Bay Trust which represents Kapiti Island landowners.  He writes occasional features for The Dominion Post and book reviews for the Waikato Times.

Lifetime of polio, now first rehab experience

Trudy  Bassett of Rotorua has had polio all her life.  She was paralysed from the neck down as an infant.   Now, 53 years later, she had discovered the caring, healing environment of Queen Elizabeth Health. 

Ironically Trudy knew the Queen Elizabeth hospital on Rotorua’s lakefront for a long time before going there for the first time in October as a post-polio patient.  She used to visit for orthopaedic and orthotic help as a teenager.  There is still, on one of the windows in the old orthotics block, the green-paint outline of a specially built shoe that was painted for her.

Trudy is a Maori.  In the early years of her polio her mother rubbed her limbs and buried her up to the neck in sand as part of the home-grown treatment that set Trudy on the road to recovery.

“That’s how I was able to overcome it.  My mother also taught me how to deal with being teased as school. She gave me confidence to do whatever I wanted in life.”

Trudy’s life hasn’t been easy.  She has two daughters, three grand-children, she works fulltime as a caregiver and now believes it is time to slow down and maybe go back to her old skills in sewing.  And keep herself safe and well with the help of her new-found knowledge of the effects of post-polio.

“I feel very lucky, really.  The staff and the meals and everything here are very impressive.  It is like another time zone -- outside, it’s a harsh world.”

Laughter lightened
PPSS conference

Humour was an underlying theme for this year's conference in Wellington.

Conference had its serious, even sombre moments, such as when tributes flowed to former president Denis Hogan, whose health caused him to relinquish editing Polio News, and when Prof Geoff Horne presented slides of dodgy-looking hip joints and slender, polio reduced thigh bones.

But there was rarely a session when the lighter side of life didn't bubble over. Questions and comments to guest speakers, usually fairly to the point, caused laughter at times. And given the opportunity, whenever there was a lull in proceedings, the meeting room soon filled with volumes of chatter.

JB Munro, the Society's super-secretary whose fame went international long ago, revealed a natural sense of theatre when he and Karen Butterworth presented a hilarious skit with underlying barbs about post-polio GP consultations.

''JB" even disclosed his first names -- unknown even to long -established associates. For the record they are John Baldwin, and he is brother of motorcycle speed ace Burt Munro.

Occasionally the guest speaker addresses were peppered with technical references like atelectasis, Arjo and BMI -- not without their own humour.

Prof Horne explained BMI and rated his eyebrows at some examples seen at Conference: "Body mass index -- it's a nice way of saying fat." And on health supplements "Very pleased some people can afford them because it keeps the industry alive'

Dave Stonyer, a guest speaker from Toastmasters, raised most chuckles with his humorous account of how the world's left-handed people were naturally superior. . . and he riveted attention right at the start by starting a chainsaw -- which like most powertools is right-handed.

He spent a good deal of his lively address by extolling the nature and capabilities of left-handed people. But he was put a teeny bit off station when Robert Overend of Wellington flourished his polio blitzed right hand and asked how a left-hander by necessity fared in the rankings.

This year's conference and AGM meant many things to many people. 

Des Crabb of Paengaroa appreciated the Friday night and Saturday guest speakers even though there was perhaps a lot of emphasis on the surgical side of the medical topics.  Overall, he thought, "a well-organised and conducted conference" in a good central location, geographically: 

"I wonder if the main value of conference is getting together with others, sharing time together and then going away feeling you belong to an organisation that cares and that other people are interested in you as a person."

Karen Butterworth, whose detailed report of medical issues raised at Conference will be published later, appreciated the lighter side of Conference -- particularly the talk by the Toastmasters speaker who amusingly outlined the trials of being left-handed:

"This was a dilemma we could all relate to, as some of us are naturally left-handed, and many more have had to use mainly their left hand through necessity. It was good to have a laugh about the consequences of people’s assumptions that we can use all the facilities and implements that able-bodied people can."

Susan Kerr of Picton, a new member of the board of management, is a Londoner who had polio in 1956 when she was nine years old.  She became a teacher of classics and modern languages, came to New Zealand in 1974, and had to give up teaching last year because of post-polio syndrome.  She runs the Picton Stroke Support Club and is a conference committee member for the International Post-Polio Support Organisation.  One of her interests is poetry, and she summed up Conference 2006 as follows:

A room of strangers
Fear prickles my mind
Doubt drains confidence
I only need
One voice
One hand
One smile

In other rooms I have sat silently
While others stood and talked
I have limped and lurched
While boys sniggered behind
Pain and fatigue
Caged the butterfly within

But here I am soon
Among friends
I recognize the kinship
That binds us as one
And unshackles our bright spirits.

Polio AGM and mini-conference

This Polio Meeting was to a large extent one that 'should' lead us to some practical efforts in helping ourselves.

Our guest speakers from the Friday evening with Dave Stonyer speaking on 'The Natural Superiority of the Left Hander' to Saturday's speakers:

1. Jarrod Ria, an Orthopaedic Physio, who talked about the role of the physio in pre and post op Hip Replacements,

2. Professor Geoff Horne, Wakefield Specialist and Orthopaedic Surgeon, who spoke on Joint Replacement and the challenge presented by patients with neuromuscular disease,

3. Christine Paul from the Arthritis Foundation who talked about ‘Falls’, and

4. Lizy Romball, the Falls Prevention Coordinator for Sport Wellington Region who discussed ‘Falls Prevention’. All looked at practical ways in which we can help ourselves cope with the conditions that present themselves to us.

Thirty-one members attended the Friday AGM and Dinner at the Brentwood Hotel in Wellington.

The usual meeting procedure took place. It was interesting to hear from JB that of the 517 members who have paid their subscriptions to date, more than half added on a donation to the Society.  We have lost more than 60 members this year through transfers to rest homes and death. Denis is proposing we do something to keep providing the support needed for our 700 members and any new members coming along. If you have a computer why not visit our website on: www.postpolio.org.nz and if you have a web cam you could chat with others in a similar situation.

A 'Futures' subcommittee has been set up to study the future of our Society.

During the course of Friday's get-together several short 'Polio Stories' were shared from the floor.

Robert Overend: Had polio as a baby (Infantile Paralysis) but did not walk until he was 6 years old. Having callipers and learning to deal with his splint put an end to any issues he may have had with his peers. Robert declared Major White changed his life.

Liz Falkner: Recalled her time in the mid 1950s in the Royal National Polio Ward. She spent time in a ward where one wall was lined with iron lungs with the inevitable whooshing sound of the bellows. One evening when it was nearly dark the iron lungs stopped working and all the hospital staff and those able to do so leapt out of beds and pulled up and down on the bellows for over an hour until the power came on again. The reward was a cup of cocoa!

Doreen McCoard: Told of how her sister helped her break the strap on her calliper and took it to the hospital to be fixed so she could get off school for a day.

Karen Butterworth: Recalled how her parents were dissatisfied with what the medical profession had done so they moved from South Otago to Wellington and then took the train to Upper Hutt to visit Bill Bell. She spent two hours with him and was given a prescription to do at home. She was to have two hot baths, each of a duration of twenty minutes every day and then stand on a brick and push her heel down and back. The result: she became a relatively normal person. Karen paid a special tribute of thanks to Bill Bell (as I am sure many other polio survivors did also).

JB: 'In battle the wounded soldiers arise!' JB learnt this at school when asked to write his obituary when he was very young. JB contracted polio when he was only a few weeks old (in 1936) and wore a calliper until he was fifteen. He remembered the two kerosene tins the Munro family had in Invercargill. He was dunked from the tin with hot water into the one with cold water. At eight years of age he spent 8 months in Dunedin Hospital under Major Renfrew White (Jubilee Ward and then the Kew Convalescent Home).

On his return to Invercargill he was told he was going to be placed with another family as it was claimed the Munros were too old (70 & 75 respectively) to keep him so the only way to do this was to adopt him. Thus John Baldwin became John Baldwin Munro (to us, JB!). If you haven't seen the film 'The World's Fastest Indian' about Burt Munro and his kiwi ingenuity, do so, as it makes very good viewing. JB mentioned also Karen Butterworth's book 'Mind Over Muscle' in which several New Zealanders told their stories.

Ethne Crabb: Was twenty-five years old when she got polio. She spent three months in the Tauranga Hospital before being sent home with a pair of crutches to help her walk (because she was a liability - she wouldn't stay in her bed!).

She had her first baby and was fortunate to have a Plunket Nurse who had been sent to America to train in the Sr Kenny method of rehabilitation. This nurse trained others in the Kenny method and organised a trip to the Duncan Hospital in Wanganui where Ethne met Mr Bell. He was thorough, severe and strong.

She was sent home to wean the baby for six months before returning to Duncan Hospital (without the baby). She was put in a room with three walls of glass mirrors to do exercises, then it was back into bed with hot packs. She had gone in with two walking sticks and left with none. Ethne recalled the first Russian Sputnik going up and watched it from the Duncan Hospital. She too paid tribute to the wonderful place the Duncan Hospital was.

Teresa Burke: Contracted polio in January 1956 when she was thirteen months old. She was helped by her Godmother and massaged with hot baths. At the age of three Professor Aldridge got her into callipers.

Jenny Green: Contracted polio in Christchurch during the 1947-1949 epidemic. She remembered how her father would carry her out to an old army stretcher which was placed under the fruit trees in the backyard and there he would massage her limbs with a mixture of a third of the juice of limes, a third of glycerine and a third of olive oil a concoction he seemed to have inherited from his rugby days at Auckland University and overseas in the Middle East. There were also many sessions in the St Albans pool and later down at South Brighton beach (great fun for a 'water-baby'!)

After the sharing of these anecdotes we were treated with a skit starring Karen Butterworth as patient - Rosalic Perplexed, JB as Doctor Well-meaning and Shirley Hazlewood with the props, curtain etc. It commemorated the 50 years since the introduction of the Salk vaccine and what happens to those who have a recurrence.

This drew lots of laughs and ended with a song... ‘Save my time and petrol and give me a one-stop shop!'

JB moved a vote of thanks to our "Guest of Honour" Mrs Jeannie Warnock and to Dave for his dinner speech (more of which later - especially empowering for those of you who are left-handed). Only Robert fell in the cracks as he is right handed by nature but has had to be left-handed because of the polio effects on his right arm. To this JB added, "I am right-handed but I am of the left!"

Hip joint replacement rehabilitation

Our first speaker on Saturday morning was Jarrod Ria, an Orthopaedic Physio, from Wellington Hospital, who focussed on the role of the physio in pre op and post op Hip Joint Replacement. (Total Hip Joint Replacement Rehab - THJR) Jarrod's presentation covered the areas of.

• A review of the rehab process for the majority of the population
• A discussion on the issues that are specific to post polio survivors and
• Mapping out the likely journey from pre-op to home. Before the operation the OTs do the pre-assessment. Then various activities take place in the five days following the operation:

Day 1 Post op: initial visit
• Bed exercises
•    Ankle pumps - moving the leg up and down to get the circulation going
•    Knee bends
•    Hip abduction
•    Straight leg raise
•     Attempt to get out of bed

Day 2
•    Re-check bed exercises (nag!)
•     Increase walking distance with ario/frame

Day 3
•     Walking around the ward independently with frame

Day 4
•    Walking on ward with crutches
•    Start trying to climb stairs
•    Close to full range of hip movement (90 degrees)
•    Hip precautions (e.g. don't cross legs or bend to tie laces as it may cause dislocation)
•    Functional equipment needs (OT)
•     Functional assessments (OT)

Day 5
•    Independently walking on crutches
•    Independent on stairs
•    Functionally independent with ADLs
•    Community physio referral, temporary home help, carers, meals on wheels, and District Nurses organised
•    Discharged home

Once Home
•    The Community Physio will check your function at home to ensure you are coping
•    They will progress your exercises and aim to get you back walking with a stick or without aids
•    This input is likely to be weekly

The equipment that is used:
•     Sling Hoist - does the work for you, takes you right up and rolls you to the side and down on to your chair
•    Standing Hoist - support is given with slings, knee and foot plates for movement, you are not really functional at this stage
•    Ario Frame - requires you to do some work, weight is through the hands to gain movement
•    Gutter Frame - a lighter version of the Ario frame, can wheel it around
•    Walking Frame
•    Elbow Crutches
•    Walking Stick

The Aims of the Physio:
•    Inpatient:
•    Start the mobilising process
•    Encourage hip range of movement
•    Ensure patient is safe to go home
•     Community
•    Return to pre-op function
•    Strengthen gluteal muscles to stop dislocation

If you haven't seen a physio since the original episode then you will likely notice a change in the way physios deliver their service. It is now more of a self-maintained process and not so much in the way of heat packs, etc. It is a physical positive approach (ACC driven).

Main differences for Post Polio Survivors

•    Likely to have a decreased level of function eg difficulty getting out of bed
•    Fatigue
•    Paralysis: It is important to see you can manage what the physios are trying to get you to do.

Pre-Op
•    It is important that the muscle groups that cover the hip joint are in their best possible state
• Level of function. What and how were you doing before the operation. Be in as optimal condition as possible. Let the physios know your level of function eg using a bed lever

Pre-Assessment Forms
All elective surgeries should have a pre-assessment form. This gives the physio some understanding of the current level of function and also a good medical history. Put in things you think the physio should know.

Post-OP

Key Factors
• Which leg is being operated on?

Good vs. paralysed
• Weightbearing status
• Fatigue - how much can we do in one day?
• Respiratory complications
• Functional activities

Good vs. Paralysed
•    If both legs are usually mobile, then functional activities (eg walking) are easier as you can favour the good leg.
•    If one leg is paralysed or functionally weak, then the recovery period is going to take longer to get you up and moving. You need good strong shoulders as your arms may hold you up a lot of the time. These are the basis of stability.

Fatigue:
Fatigue can be a big issue and is not always acknowledged while on the ward. It is about trial and error to see what can be done without over-exertion. From there, we can plan for the next day to ensure we are progressing forward.

Nurses like everything done first thing and getting you going. They are not really aware of the effect of fatigue so it is important to express this to the nurses. Start with gentle exercises. The hardest thing is getting out of bed (bottoms stick to beds like glue!) Get up, into a chair and then stand. Then you will feel a lot better.

The equipment helps the physios concentrate on different parts eg sitting, getting in and out of bed or just walking. You are attacked at all different levels eg Up-5 minutes. Walk-5 minutes, Stand-5 minutes. You need to go forward bit by bit.

Respiratory Complications:
•    Possible issues include decreased lung function or trunk posture compromising the work of breathing.
•    If this is highlighted as a risk at pre-assessment then you will be seen as soon as possible post-op.
•    It is quite likely to get post-op atelectasis when lung function is compromised and you are at increased risk of chest infection.
•    To prevent complications we prescribe breathing exercises:
•     Three diaphragmatic breaths with holds
•     Huffs and coughs
•    These exercises help re-inflate the lungs and clear any secretions.

Functional Tasks:
•    Both occupational therapy and physiotherapy are important here
•    The operated leg may be a necessity for functional tasks
•    It may require a different strategy, some added equipment and/or assistance until the hip has recovered.
•    Crossed legs are a no-no as are raising the legs and swinging to the edge of the bed.
•    Different strategies are taught and learning new techniques can affect the fatigue aspects. It is tiring at first, as if you are doing a first time marathon and a second time, a 100m sprint, but it gets better!
•    Sitting up on the side of the bed
•     Two functional legs
•     One weak leg (roll, push upon bed lever to push and turn)
•    Upper limb weakness
•    Usually need three points of stability after this operation.

Upper limb weakness poses other problems; shoulder dislocation etc. It all adds time to recovery. Keep your body strong as well. It is a big issue if there are problems with the upper limb.

You may need to get into a wheelchair initially to get moving.

Rehab Wards:
5-10 days is usually normal. In hospital, you will be seen once by a physio, and then maybe by a physio assistant. In rehab you will be seen two times a day.

It is likely that additional rehab will be required. (2-3 weeks).

Acute wards do not specifically emphasize functional activity training Rehab provides intensive allied health input with the aim to return to previous function or better It may take some time in rehab to get ready for home.

Summary:

Pre-Op
•    Be as physically fit as you can

Post-OP
•    Depending on specific issues we aim to mobilise you as soon as possible to decrease recovery
•    We problem solve to overcome functional difficulties
•    Your stay in hospital is likely to be longer than a less complicated case

Some issues arose as a result of this talk:
•    Karen - Beforehand we need to be given good pre-op input to look at our habits (ways of getting in and out of bed, wheelchairs, sitting, etc)
•    Jenny - Problems can arise with those using BIPAP machines so you need to    take your equipment with you, including getting the parts needed such as an oxygen adapter for the time in the recovery ward. (There are only 3 BIPAP machines in Wellington Hospital and these are not easily available.)

The need for extra warmth post-operatively was another aspect that should be expressed before the operation.

•    Robert - We need preventative physio, which you can't generally get free. You have to wait until you get to the bottom of the heap.

Jarrod's reply to this was that physios couldn't justify maintenance. They can only go for stints such as 6 weeks or twelve weeks.

Capital and Coast District Health Board have a booklet prepared by the Orthopaedic Occupational Therapists, which provides general information on how to manage daily activities following a Total Hip Joint Replacement. It is entitled:

Total Hip Joint Replacement - A guide to returning to daily activities following surgery.

Post-polio feature at Disability Expo

Information was the keynote of a post-polio display at the Disability and Health Expo held in Hamilton in September.  It was one of more than 70 stands ranging from disability and mental health groups and social services to equipment suppliers and sporting organisations.

Well attended, the two-day Expo was staged by LIFE Unlimited and there were workshops and speakers as well as a display of mobility scooters, giveaways and professional advice on many topics. It is likely to be an annual event.  The health sector was introduced this year as a result of a comprehensive survey at last year's Expo.

Members of the Waikato Post Polio Support Group manned the post-polio stand and informed people about the Post Polio organisation with the help of articles and photos about polio survivors. The stand also featured a world map showing countries where polio is still active.

"We handed out pamphlets and showed a DVD of some of our Australian polio friends talking about their lives since contracting polio," said Laura Ladkin, one of the stand organisers.  "I thought it was a very well organised and excellent way of informing the community of the predicament of many people who are disabled and have health difficulties."

Branch News

Northland

Hullo again from Whangarei and the Far North. Spring is in the air and Christmas is just around the corner once more! Hasn't the year flown?!

We've had some enjoyable meetings (and meals) together over the past few months and our members are all in good spirits.

At our August meeting we met together for our A.G.M and to view the Australian "Post Polio Syndrome" DVD. We all found it very interesting and gained some more insight into managing our post polio symptoms as we age.

The DVD has been circulated amongst our members in Kerikeri and we will continue to pass it around for other members to see when they get access to a DVD player. We have enjoyed meeting together in small groups of members to view the DVD.

Our recent meeting was once again held in the beautiful Parua Bay home of our member, Shirley MacLucas. After a scrumptious shared lunch, Shirley talked to us about her work as a J.P. and marriage celebrant, in the community. Challenging and time consuming work which we know Shirley handles with great confidence.

Next month is again the final meeting for the year and we are to have a Christmas luncheon together at the Stage Coach Hotel in Kamo on Wednesday 8th November. All welcome!

Best Wishes to all for the Festive season. We look forward to being in touch again in 2007!

Ruth Inglis.

Nelson – top of the south

Hi everyone,

Another year is drawing to a close. From several aspects I hope next year will be a better one for many of us. No news to report  really.

Our Christmas luncheon will be held on 25th November, 12.30pm, at the Brightwater Tavern.

There is good parking and building access here so do try and join us.

Please confirm your attendance with me (545.1030)  Or with Rex on (5477.043) before 22nd November.

As oxygen requirements dictated our circumstances somewhat  Paul and I made a day trip to Hanmer Springs on 11th October in company with Rex and Anne Wastney to meet up with our old friends of Hanmer Camp days.

It’s so disappointing to find a splinter group has set up a different camp thus eliminating the opportunities of sharing problems and caring about each other, and fostering friendships amidst much fun and goodwill.

Although we came from all over New Zealand, we didn’t gatecrash but paid our fees and costings so that  the burden did not fall on Christchurch.

Surely some firm direction from the presidency would have eliminated all this as Ray has  attended these camps also?

It is so necessary that we support all our folk NZ wide as we age and deteriorate, and if they are able to travel to this gathering at this delightful little spa town and use  the mineral pools, that’s wonderful!

And on that happy note may I wish each and every one a very happy Christmas and the very best the New Year can bring you.

Jenny Kissane.

Christchurch

Can it be nearly Christmas ? 

It must be because my appointment diary already lists two Christmas dinners.   So here's wishing you all a Merry Christmas and if you happen to be in Christchurch on December 19th do join us at our branch dinner.   Just ring Ruth Hall 385 8306 to go on her list.

Our most recent outing was to admire the blooms at a Canterbury daffodil farm, a huge area that supplies a wide market.   We've also had some entertaining speakers including Kirsten Roberts who told us of her involvement in Alaskan dog racing as a vet caring for the sled dogs who run for over a thousand miles in about 9 days.   As I write we have preparations under way for a week at Hanmer, staying this year at motel style accommodation. 

Great to have three new members join our branch recently. Roll on 2007.

George Ross

North Otago

The North Otago group had its AGM  in August, no changes at all in the office bearers and orders of office at all.  We will all be there till doomsday I think....

Group Leader - Jill Steenson
Secretary -  Trish Hill
Treasurer - Gaynor McNaught

After the AGM and a short general meeting we all headed off down town to lunch at 'The Star & Garter'.  A really big crowd in there that day but we all managed to squeeze in and have a lovely meal.

We always get a good turnout when there is food involved !  What does that tell us ??

We are trying to encourage some new folk to come along and join us so hopefully that will happen over the next meeting or two.

We are still finding people out there who are having problems but don't really want to actually be involved in becoming a member.  A pity as we have so much information to offer them if they wish to read it and the Australia DVD is a good one to show to someone struggling with new onset issues.

North Otago has quite a good library so members and others can obtain a loan of books etc from Trish who is also the Librarian.  The library is housed at CCS Waitaki rooms where we hold our bi-monthly meetings.

With Christmas coming up we will be discussing where to go, what to do for our end of year 'do' at the October meeting also.  We are enjoying some beautiful Spring weather lately, just what the Doctor ordered after the dreadfully cold winter.  It is so nice to see the cherry trees, spring bulbs all popping up and making the gardens look their best.

So in ending we wish all our members a great summer, no polio scares to worry about (as long as we keep encouraging young mothers and fathers to immunise) and enjoy the upcoming Festive Season.  It will be here before we can blink. See you next year !

Personal stories

My Life after Polio.

Margaret Charlotte Chapman

I was born in Wanganui in 1916, the youngest of six children, my parents had a small farm just out of Wanganui.

When I was three-and-a-half, my parents took us into Wanganui for the day; we had a lovely day out and got formal family photos taken at the photographer's studio. Two days later I become unwell with very high temperatures and lots of pain. I was put in isolation at the local hospital and not allowed visitors. Not much fun for a three year old.

After ten days they took fluid from my spine and diagnosed polio. I seemed to gradually recover from this bout and finally was moved to a big ward.

I think the treatment and spinal taps then must have been painful as I remember being terrified for a long time of any trolley, being pushed into the ward.

After lots of physiotherapy treatment and hot baths and exercises and massage I regained some feeling back in my legs and after nine months was finally allowed to go home.

My spine was misshapen into an S shape and is still like this today, although it gives me no pain.

When I went home I had callipers on both legs up to my knees, I limped badly on my right side, both my legs were affected, and I walked on the tips of my toes. The little fingers of both my hands were badly bent and I had no muscles in the pads of my thumbs.  I continued on with treatments over the following years and managed to get through my school years although I was still very lame and one leg was much shorter than the other.

My family moved to New Plymouth and at age fifteen I was admitted to New Plymouth hospital where a Dr Rich performed further surgery including lengthening my legs.

One leg by six and a half inches and the right leg by two and a half, and straightening my toes. I was in hospital for just on six years. During this time I had a lot of operations and was in a plaster cast for six months.

Complications developed resulting in my left heel becoming ulcerated and I ended up with no heel. I then had a large graft taken from the inside of my thigh which was used to make a new heel.
Finally, the day before my 21st birthday I went home.

The operations were successful and I was walking with out callipers and my legs were almost the same length. They told me to go home and walk and learn to dance.

They did however not think I would ever be able to have children.

My two brothers taught me to dance in the kitchen at home and when I had mastered the steps and could cope I made my own dress and went to the young farmers ball. I walked to church every Sunday with my brothers and sisters, two miles each way and my legs became stronger.

Two years later I married my husband Bill, a farmer from Southland. We had six children and were married for sixty years. We still enjoyed the country dances until the latter years.

I worked on the farm with Bill and there was not much I couldn't do from driving the tractor milking the cows, skinning rabbits, to being an active member of the local women's division and Catholic women's league.

I still had to have podiatrist treatment regularly and had to have my shoes specially made with a bar across the sole to support the ball of my feet. My feet were two different sizes – one was 3 and a half and the other four and a half.

We retired to Central Otago, then about twelve years ago I developed pain in my right leg after having physio in the local pool. Initially my doctor thought I had pulled muscles but within 24 hours I became very unwell and my leg became very swollen

I was firstly admitted to the local hospital in Central Otago, then within a few hours my leg became very discoloured and I was rushed to Dunedin. I had developed septicemia and my leg was amputated just above the knee. Although I don’t remember much about this time in hospital my family said the first night they gave me a 2% chance of surviving. But I did. Initially the hospital was reluctant to try me with an artificial leg as they thought I would never manage one, possibly due to my age and the effects of the polio on my spine to manage my balance. But I was very firm in telling them I wanted to try and I was as pleased as punch the day I had it fitted and walked into the intensive care unit to show the doctors and nurses that I could walk again.

My life after polio? Yes, I am still affected by this disease, it is hard to tell now how much better I would be now if I had not had it. I think other conditions such as arthritis are harder to cope with.

My boots are made by the wonderful people in the Orthotics Department. One for me, and one for Jimmy, my leg. My balance is not good but I manage pretty well with my walking frame. My spine is still crooked and I still have to have regular podiatrist treatment to my toes which are still misshapen from the 1923 polio. And I have a lot of pain in my neck which may be coming from my spine.

I am now in my 90th year. I still live independently in my own home with the assistance of home support services. I enjoy going to local activity groups to play cards, make crafts and catch up with friends. I also enjoy my family of six children, many grandchildren, great grand children and great great grandchildren. Yes, I am the oldest of five generations.

I feel I was one of the lucky ones from that epidemic so many years ago and am thankful for the vaccines that are available to prevent children contracting this today. Polio has impacted on my life but it has not stopped me living my life to the full.

Disability Helplines

TAKE IT EASY ON YOURSELF
If you have a regular manual wheelchair, keep an eye on your tyre pressures.  They're meant to be up around 65psi (check the reading on the side of your tyres) and you might have to nip into a tyre bay for them to be inflated -- there's never a charge for this!  Having the tyres good and hard makes a huge difference to the amount of effort required to propel your chair.

•••

Another effort-saving tip for wheelchair users:  If sometimes you have to cross grass or gravel, you'll have problems with the regular solid-tyred, skinny wheels.  A useful replacement is a pair of inflatable 200x50 wheels and swivel forks that slip precisely into the regular half-inch bearings on the wheelchair.   They do need an occasional inflation check, but only to 36psi and they don't drop pressure as quickly as the main wheelchair wheels.  They're okay for normal use, too.

•••

Anyone on crutches or sticks will be well aware of the hazards of plastic bags that blow around supermarket carparks.  However don't ignore their slippery nature as a possibly useful gizmo.  One member sits on a plastic bag for ease of swivelling onto and off her car seat on short trips.

•••

There's nothing worse than a squeaky crutch!  Everyone knows where you are, any time you want to move quietly.  Some of the standard-issue orthotics crutches are full of creaks and groans that are beyond the skills of some orthotics staff.  Try a simple fix by pulling them apart and neatly wrapping thin strips of duct tape over the bearing caps that easily detach from the bottom tubes inside the upper casing.  It's a bit of a fiddle but well worth while.

•••

Weeding your herbaceous borders is easy if you can use a mechanics' tools-stool to roll along on your level paths.  Instead of carrying spanners and stuff you can stash little diggers and forks and secateurs under the seat.

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Contributions, please:  If you have any tips or tricks to share, please send them to the Editor for possible use in Polio News:  Jim Webber, 103 Amohia Street, Paraparaumu 5032.  Email address:  ferris.webber@paradise.net.nz

Medical Matters

1. Chicken virus and polio virus – is there a similarity?

By Richard L. Bruno, Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre.

Reprinted from TAS Polio News, June 2006.

Scientists are trying to come up with a vaccine to prevent an epidemic of a chicken virus that is killing people in Asia. Is this how the polio epidemics started, with animals giving polio to people?

This is a timely question since April marks the 50th anniversary of the Salk injectable, killed-poliovirus vaccine and the beginning of the end of the polio epidemics. Actually, no one knows where the poliovirus came from. Animals are not carriers of the poliovirus since it occurs naturally only in humans.

However it's fortunate for us that other species can catch polio from people. Back in 1908 researchers injected fluid from a boy who had died from polio into monkeys, who became paralysed. Those sick monkeys then were able to paralyse healthy monkeys, proving that polio was caused by an infectious agent. What's more, a vaccine would never have been possible without monkeys' susceptibility to polio.

By studying polio-infected monkeys, neuropathologist David Bodian was able to discover that there are three different types of poliovirus. He also discovered the path the poliovirus followed – from the intestines into the blood and then into the brain and spinal cord – findings that indicated a vaccine that stimulated the creation of blood-borne antibodies would protect against polio.

Once Bodian laid this groundwork he, Jonas Salk and Albert Sabin used more monkeys to see if potential vaccines generated antibodies to all three types of poliovirus Sabin stated that "approximately 9,000 monkeys" had been used to test his oral, live/attenuated polio vaccine.

Fortunately, the primate world got something back for its sacrifice on behalf of humankind.
In 1966 an out-break of polio in a Tanzanian village spread to a chimpanzee colony being studied by Jane Goodall.

Although 12 chimps died or were paralysed before the colony could be vaccinated, the polio vaccine saved the rest of the chimps.

Sadly, the colony's reaction to one affected chimp is reminiscent of the experience of many human polio survivors. An older male named McGregor was paralysed from the waist down and dragged himself around the camp using his arms.

Jane Goodall writes in "In the Shadow of Man": "One of the most tragic things about the whole tragic affair was the reaction of the chimps to the stricken paralysed male." McGregor was menaced by the male chimps and was beaten by one of them; others kept well away from him.

Goodall watched a group of chimps grooming each other in a tree, grooming being the primary means of chimp socialisation.

She writes that McGregor "Dragged himself from his nest ... and in short stages began the long journey to join the others. When at last he reached the tree ... he pulled himself up until he was close to two grooming males. With a grunt of pleasure he reached a hand toward them in greeting. But even before he made contact they both had swung quickly away and without a backward glance started grooming on the far side of the tree. For a full two minutes old McGregor sat motionless, staring after them. And then he laboriously lowered himself to the ground. As I watched him sitting there alone... and when I looked up at the groomers in the tree I came nearer to hating a chimpanzee than I have ever been before or since."

McGregor's rejection mirrors the painful experiences of human polio survivors that make them too frightened of rejection even today to "look disabled" by changing their life-styles in order to manage PPS. These experiences also make clear why vaccination must continue, in the United States and throughout the world, so that polio will be eradicated.

Unfortunately, 50 years after the development of the vaccine, the same mistake is being made today that was made when the polio vaccine was released in 1955. All of the world's attention and resources are being directed toward vaccination while too few of the world's 20 million polio survivors and their health care providers know about post-polio sequelae Syndrome. This need not be so! There are sufficient resources to not only eradicate polio, but also to educate about and treat PPS.

2. Should travellers get polio boosters before leaving..?

Reprinted from TAS Polio News, June 2006.

Travellers should check their records to make sure they are up-to-date on all vaccines when planning to leave the United States. Polio no longer occurs in the Western Hemisphere, Europe, USA, Japan, China, South East Asia, Australia, New Zealand and other countries in the Western Pacific region. Children should be up-to-date for their age on all vaccines before travelling. Adults who are not completely vaccinated should get as many doses as possible before departure. Adults who have had three doses might need another dose before travelling to areas where polio still occurs, including developing countries in Africa, South Asia and some parts of the Middle East. To find out refer to The World Health Organisation Polio Eradication website at: http://www.polioeradication.org

3. How is Polio spread?

Reprinted from TAS Polio News, June 2006.

The virus that causes polio is spread from the throat and through stool (faeces). People can also spread the virus by touch if they do not wash their hands after coughing or using the toilet.
Food and liquids can be contaminated this way. People who have not been immunised can get polio disease by eating food or drinking liquids containing the polio virus.

People with polio may spread the disease from about one week before their symptoms start until about six weeks after. Symptoms usually start about one to three weeks after a person is exposed.
Source: PUBLIC HEALTH FACT SHEET – Polio, Massachusetts Department of Public Health.

Review

The Post-Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families.

By Margaret E. Backman, Ph.D - clinical psychologist who specializes in helping individuals cope with medical illnesses and physical disabilities. Available through amazon.com USD$30.93 (incl.p & p) which converts to approx NZ$51.

A very easy book to read which explains how many polio survivors are finding themselves, with new symptoms reminiscent of the earlier days when they first had polio – new symptoms that trigger frightening memories, along with anxieties that had long been repressed. Dr Backman examines the polio survivors’ psychological reactions to their earlier experiences and to their current struggles with the late effects of polio.

It includes guidelines for polio survivors on:

•    Coping with the emotional and interpersonal aspects of Post-Polio Syndrome
•    Managing stress and depression
•    Negotiating relationships with family and friends
•    Developing a positive self-concept
•    improving doctor-patient communication

Family and friends learn how to deal with the changing role -- that they and the survivor now face, and gain insight into their own needs, as they interact and sometimes conflict with the polio survivor's needs.

Mental health providers and physicians gain a better understanding of their patient's psychological reactions to Post-Polio Syndrome – paving the way for a more effective treatment.

Literature Available

1.  Handbook on the Late Effects of Polio"- Revised edition. Ed. Frederick Maynard and Joan Headley. Gazette International Networking institute (G1 NI) $25

2. "Managing Post Polio: A Guide To Living Well with Post Polio Syndrome" Ed. Lauro Halstead. National Rehabilitation Hospital, Washington D.C. USA. $25.

3. "Mind Over Muscle. Surviving Polio In New Zealand. Ed. Karen Butterworth. Dunmore Press $25.

4. "A Practical Approach to the late Effects of Polio" Charlotte LeBoeuf. Post Polio Support Group of South Australia $3 (This is an early post polio handbook but is still very good value.)

5. "Helping Polio Survivors Live Successfully with The late Effects of Polio" Post Polio Network (NSW) Inc. $3 - A concise, helpful and very readable handbook.

6. "Polio" Ed. Thomas M. Daniel and Frederick C. Robins. University of Rochester Press. $35 A collection of scholarly essays. One copy left.

7. "Late Effects of Polio - A Resource Guide for Survivors" by Philip G. Ruiz  has been revised and reprinted under the authorship of Professor Joan Walker and Philip Ruiz.

Directory:

Contact address: Post Polio Support Society NZ (Inc), P.O. Box 249, Oamaru.
Phone 0800 4 POLIO 0800 4 76546
President Ray Wilson, 29 Aln Street, Oamaru 9400,
Ph / Fax 03 434 6405 email Ray1.wilson@clear.net.nz
Secretary and Treasurer: J B Munro, 120 Factory Road, Mosgiel 9024 email JBmunro@xtra.co.nz
Tel. 03 4891995 Fax 03 489 1996.

Mission Statement

The aims of the Society are to provide support for those who have had polio. In particular
(i) to collect and distribute information that will enable members to understand and moderate the changes occurring in their conditions;
(ii) to inform medical practitioners of the reality of post -polio syndrome and help update them on advances in research and treatment, and
(iii) to work towards the establishment of assessment and treatment clinics for polio survivors and the establishment of at least one centre of excellence in New Zealand for the study and treatment of post-polio syndrome.
Publication: Polio News is published in March, May, August and November - copy deadline the 15th of the preceding month.
Disclaimer: Opinions expressed in this newsletter are those of the writers and not necessarily of the Society.

Acknowledgement:This newsletter has been paid for by a grant from the Lottery Grants Board and the J.R. McKenzie Trust, to whom we express our thanks.

Ray Wilson re-elected PPSS president


There was no contest for the top appointments at the annual election of officers.  When nominations closed there was one for each job.  Ray Wilson (right) was returned as president.  Philippa McDonald of Kapiti (centre) is the new vice president.  And JB Munro (left) continues as secretary-treasurer. 
The new management board is well spread through the country.  Members are Cormack Brennan of Rotorua, Des Crabb of Bay of Plenty, Claudia Mushin of Wellington, Susan Kerr of Marlborough and Jenny Green of Otago.

Liz Falkner of Wairarapa is the ex-officio medical adviser.
Waikato Post Polio Support Group members Laura Ladkin (centre) with Dot and Maurice Holyoake, manning the group's display at the Hamilton Disability and Health Expo.
Canterbury daffodils outing.

Contribute: Send your items to the editor, Jim Webber, at 103 Amohia Street Paraparaumu 5032, or email ferris.webber@paradise.net.nz.
Deadline for March: 15 February

A day in hospital

You are awake at six each morning with a violent, shuddering start.
And you see through bleary eyes, the good old poison cart.
And Sister checks the folders to see just who gets what.
Some just get a pill or two, and some the ruddy lot.

So, you settle back to rest again, and on your bed you flop,
when in comes good old Sadie with her bucket and her mop.

Then once again you try to sleep and you gently drift away,
when in comes Cookie with her mob and your ruddy breakfast tray.

And when the dishes have been cleared, and you think "Ah! The slumber hour",
The bloomin' nurses wake you up, and makes you take a shower.

And so it goes all through the day, you cannot get a rest,
there's pills to take and doctors to see, and here and there a test.

And when at night you go to bed, and pray the Lord to keep -
they wake you up at ten o'clock with a pill to make you SLEEP!

Deadline for March: 15 February

All contributions to the Editor, Jim Webber, 103 Amohia Street,
Paraparaumu 5032, email ferris.webber@paradise.net.nz