March 2007 Newsletter of the Post Polio Support Society NZ (Inc.)

MINISTRY PLAN ON WILD POLIO IMPORTS

New Zealand's health ministry plans to develop a strategy this year to cope with a possible outbreak of polio again in this country.

    The move comes after a year in which "wild" polio (naturally occurring, rather  than vaccine-origin) gained ground slightly overall throughout the world -- driven by cases which more than doubled in countries where polio is endemic.

    Nigeria led the 2006 list of countries with polio cases -- 1090 compared with 749 in 2005.  In India there was a 10-fold gain from 64 to 655, followed by Pakistan (27 to 39) and Afghanistan (7 to 31).  Other countries with cases in double figures last year included Somalia, although its polio cases fell to 36 from 154 in 2005, Ethiopia, Bangladesh, Congo, Niger and Namibia.

    Following reported anxiety late last year in Australia about polio carried by travellers from endemic countries Polio News asked the NZ Health Ministry about what it intends to do here.  A statement from a ministry immunisation specialist confirmed there is a risk of wild polio importation as long as cases continue to occur.

     "If there is an increase in cases of wild polio around the world then the risk increases to any country, including a polio-free country, that a case will be imported. The question is whether an imported case is able to successfully transmit the wild  polio virus to a non-immune or susceptible host.

If a country has good immunisation coverage levels in children and a previously vaccinated adult population, the country is at low risk."

    This is why continuing polio immunisation and reinforcing coverage and polio vaccine boosters is continued in New Zealand before travel to high risk countries.

    "An increase in polio cases around the world is a reminder that immunisation is essential to continue to prevent polio disease in New Zealand, but the risk is very low of any imported single case transmitting virus to cause an epidemic.

We will be developing  our plan this year. The awareness in Australia would be for the same reason -- developing a plan in case, rather than because of fierce concern about a risk now."

IN THIS ISSUE

Editorial
President’s report
Book review
ANZ conference
Support groups
Medical:Joint replacement
Wilson Home
News briefs
Falls, Tips and Tricks
UN Disability Treaty
PPS Biomarker?
Denis Hogan’s story
QE Health summary
Wheelchair-friendly kitchen

Editorial

The new United Nations convention on disability (see page 10) raises some important issues for us here in New Zealand, specially in relation to health services and our ageing population.  Of course New Zealand's health ministry will "adopt" the convention, specially since the New Zealand delegation, which included disabled members, put so much effort into ensuring the claimed quality of the new UN protocol.

However, whether the Ministry of Health's good intentions become real-world reality will depend on how seriously it talks with the disability sector in New Zealand.  It will need to be sensitive to its many concerns, including the relationship between disabled and aged New Zealanders. And it will need to consider sensibly their varied requirements of health services.

For evidence that there is a relationship one needs to look no further than residential "hot spots" where there is a huge imbalance between older and younger people in the population.  In such towns the OT nursing units are so stretched looking after the needs of the elderly that the disabled often have to wait a very long time for attention.

Of course, just about all we polio survivors are getting on a bit and we appreciate the needs of the aged sector.  But many post polio people, often against best medical advice, leave seeking help for polio-related problems until help is absolutely essential.  Then in many areas they have to wait, and wait, for assessments and treatments in spite of having been advised by rehabilitation specialists that they should avoid over-use, pain and fatigue. 

Some might urgently need grab-handles to use their bathrooms safely.  Some have staggered on for years on deteriorating joints and need mobility aids.  Some have huge problems handling shopping and taking heavy washing out to the clothesline without the help of ramps or handrails.  If you can foresee trouble looming, get in with an application and as early as you can -- and don't under-state the problem!

Health Minister Ruth Dyson already has signalled that the new disability treaty will lead to a "major shift in how governments treat people with impairments".  It is to be hoped that in New Zealand, whatever policies are handed to the DHBs, the ministry will ask and appropriately respond to the results of searching questions to each of the disability sectors.       --  J.W.

President's Report

    Hello to you all and a Happy New Year and all that entails.  Jim Webber, the Polio News Editor, has just reminded me that it is time I put my fingers to work and prepared this report.  As our new Editor Jim has some very big shoes to fill and he has our support and confidence.  I wish also at this time to thank sincerely members of our Christchurch Post Polio Support Group who have over the years devoted so much of their time to the folding and mailing of Polio News.

    When the November issue of Polio News was being posted our former editor, past president and life member Denis Hogan passed away.  He will be sorely missed.   It is the nature of our organisation that the passing of long-serving members is inevitable.  After each issue of Polio News we receive advice or "Gone no address" in mail relating to our members who have recently died or left home to another addresss.  This is often the first we hear about it, so if you hear of a member's changed situation could you please let me know either by calling free on 0800 476 546 or dropping a note to PO Box 249 Oamaru 9444.  To those of you who have lost a family member over recent times or have been experiencing serious illness, please accept our sympathy.

    Each year we apply for funds to support the work of our national society from the JR McKenzie Trust and the NZ Lottery Grants Board.  Just before Christmas it was a delight to receive confirmation that our applications had been successful and for which we are most grateful.  We also continue to receive support from the Sir Thomas and Lady Duncan Trust which is very much appreciated.    

    Between annual meetings of our society the elected Board of Management have their meetings by teleconference.  Board members have felt for some time that it may be more productive if we could, halfway through the year, meet face-to-face and thus get to know each other somewhat better.

    This month the Board will have a two-day face-to-face meeting in Wellington.  It will incorporate a visit from Mary-ann Liethof, the Post Polio Community Officer from Victoria. She will share with the Board the current situation in Australia, their strategies to assist local support groups facing dwindling membership and the ongoing pressure to ensure that health and rehabilitation services do not neglect the late effects of polio among survivors.  This meeting will also consider a report from the Futures Committee set up at our last annual general meeting to focus on how we should be directing the efforts of our Society facing a decade of fading membership and diminishing support groups.    

    In closing I trust you have all had a relaxing time through the festive season and up to the time of receiving this first 2007 issue, so I will sign off now and report again in May.

Ray Wilson, President

Tributes flowed following the death in November of Denis Hogan, QSO, who for so many years was president of the Post Polio Support Society of New Zealand.  Denis (pictured) died in hospital in Christchurch, aged 79, after a battle with cancer. He was the post polio society's first life member.
At the 2006 annual general meeting, when Denis's health was declining, delegates spoke in glowing terms about his stewardship and commitment since the inception of the PPSS.  The minutes highlighted Denis's invaluable contribution to the life of our society.  

The story of Denis’s early polio years appears on pages 11 and 12 of this issue of Polio News.  It will remind some other polio survivors of how it all started.  He got out of bed one morning and fell to the floor . . .

Review: Losing Weight-- Against Heavy Odds

Terry Stewart of Waikanae  (pictured) is a trim 60-something survivor who has coped with more, much more than late effects of the right-side polio which partially paralysed both hand and foot when she was 12 years old.  She struggled for 50 years with being over-weight, then a little over a year ago took herself in hand and started a process that easily shed 32 kilograms. She tells the story of how she did it  in a neat little glovebox-sized 42-page book.

The odds were heavily stacked against Terry ever losing weight. Her forbears were big, shewas robust with a naturally big appetite.  She was a chubby child, a plump teenager, and she married in her mid-twenties and went dairy farming . . . “it meant providing big meals for working men while blithely ignoring how much more I was also eating in the process”.

Over the next 40 years her weight swung between her pre-wedding 78 kilos and up to 125 kilos.  Twice she lost 30 kilos with weight-loss programmes.  Each time the fat came back.

The spur to do it properly came during a Norfolk Island holiday in mid-2005. 

The problems of struggling onto tour buses, needing extended belts in airline seats, plus the cringe-effect of having her 113 kilos being wheeled along by an older, lighter husband . . . it was a turning point sharpened by the effects of weight on her polio-affected system.  Terry faced up to the two basic truths of having to make an attitude change and realising that only she could do it. Her book is an entertaining and convincing dialogue not only with herself but also with anyone in need of help to get on top of over-weight problems.

There’s a lot of useful information in her book about calories and kilojoules, eating sensibly and well, reading food labels plus of course “the diet” and an excellent basic soup that underpins the whole vision.  Terry even includes some fridge-door “self support” quips.

Good reading, and not just for the overweight.

(Healthy And Flab-you-less”, by Terry Stewart, 79A Ngaio Road,Waikanae 5036, $7 posted, $5 collected)

CONFERENCE ON FUTURE OF ANZ POLIO NETWORKS

Representatives of PPSS New Zealand will confer with their Australian counterparts at a trans-Tasman discussion in Sydney in May.  The conference will focus on the future directions of post-polio organisations in both countries, specifically developing strategies to ensure the continued operation of post-polio networks and defining plans to provide essential services to members.

The Australian move follows a series of Post-Polio Network committee meetings in New South Wales which led up to organising the conference of member networks -- including New Zealand.  Funds held in trust by the NSW network following the Melbourne 2000 conference will be used to help stage the May event.

Specialist speakers and workshops will form the structure of the conference which will be held on May 2 and 3. The New Zealand delegates will be named at the PPSS Board meeting in March.

SUPPORT GROUPS' BUSY YEAR

Most of the PPSS support groups had active and varied years in 2006 and there were special programmes at many end-of-year meetings.

At Lower Hutt the group's oldest member, Frances Sykes, three months away from her 98th birthday, was given a special welcome, as were Doris Hoare, well into her 90s and until recently convenor of the group, and some new members. Six of the people present were "veterans" of Wellington's Ward 14 during the 1948 epidemic.  During Lower Hutt’s year, speakers included Judy Blair (music therapy for disabled and intellectually handicapped children) who is interested in the pre-school area and brought a variety of "instruments" she uses.  Glenys Hill spoke to the group in May about riding for the disabled, which she organises and operates in the Upper Hutt area.  Dr Jocelyn Williams, herself a post-polio person, spoke in August about her years of work in Pakistan which she still visits to help where possible.  A member of the Hutt group, she also showed some colourful craft items at the November meeting.

Polio “veterans” of Wellington’s Ward 14, pictured here with polio-days photo album at the Lower Hutt group’s end-of-year meeting: Centre is group convenor Judy Cameron and from left Jim Webber, Maureen Reves, Sylvia Slater, Dr Jocelyn Williams and host Yvonne Morgans.

Lower Hutt’s Frances Sykes, 98, is a champion knitter -- pictured here with some of the 14 teddy bears she knitted for the “Share Bear” project in her local newspaper. The project produced nearly 300 bears to be distributed  to children via Rotary and various charities.  Frances came to NZ from South Devon in 1988 and often knits babies and  children’s wear for friends.  She says knitting keeps her fingers from seizing up with arthritis.      Photo courtesy  Hutt News.

The Western Bay of Plenty PPSS president Des Crabb reported another "vintage" social year with well supported and very successful gatherings. He also complimented field officer Gill Raine for her contribution to the group's gatherings.  The area society's finances enabled continued employment support for the field officer who also had a busy year keeping contact with and supporting members.

In Hamilton Helen Khouri of Wheelchair Solutions talked to the Waikato PPS about the importance of using a wheelchair to conserve energy, even if only for a half-day or when energy levels were low.  She described the criteria for funding wheelchairs when needed for help in daily living and mobility in the house and as far out as the letterbox.  Various types of wheelchairs and their problems, such as damage to carpets, were discussed at question time. 

Northland

Happy 2007 to you all. We hope you have enjoyed some rest and recreation over the Christmas Summer holiday period, though many of you like me probably look forward to settling down to "normal" again after hectic family holidays, excitable grandchildren and lots of visitors!
Not much Northland group news at present but we are planning another stress-free enjoyable year with several luncheon outings and interesting speakers. Our first "get-together" is in February, a luncheon at the Marsden Pt Oil Refinery Cafe with its nearby Refinery Visitors Centre -- an excellent place to visit.

Nelson - Top of the South

Hope you are all recovered from the Christmas festivities and getting into "' gear " for what 2007 has in store for us!  Our Christmas luncheon was much enjoyed by 14 of us and we now look forward to our mid-winter gathering but more on that in the next newsletter. Our members send their best wishes to Kathy Standen who has shifted to a care situation in Golden Bay.  We hope she has settled in happily over there.

I would like to record our gratitude and respect for Denis Hogan and his tireless efforts over the many years on behalf of Post Polios, and convey to Helen and her family our very deep sympathy.
Whenever we had a problem or a query it was to Denis we would turn and he was never fazed or impatient with our phone calls. He was a mine of information that I doubt will ever be replaced.
Try and have a good year everybody and keep well.

Jenny Kissane.  

West Coast Group

We wish all post-polio groups the best for this year.  We gathered together for the final 2006 meeting on a beautiful sunny day and enjoyed a pre-Christmas lunch.  Sitting outside under sun umbrellas gave us an opportunity to talk over what we had achieved during the year.

Changes in the District Health Board are of great concern and we need to update our information on benefits and care and know what is available to us as we get older.

It is great that we have good friends who provide transport to these meetings and we do thank them.

Christchurch

Denis Hogan, a stalwart of the Christchurch Branch and the wider Post Polio community, has left us.  Denis was a founding and sustaining member of our group and will be greatly missed.  In all, three members have been farewelled since November and others have suffered family loss.   Our sympathy to all those grieving.

We have begun 2007 with a visit to the Court Theatre for Guys and Dolls, a barbecue for the swimming group and a visit to the Ashburton Aviation Museum -- this latter postponed last year due to a snowstorm.

Last year concluded with a visit to the local Rescue Helicopter base (see photo), with an afternoon tea at a nearby cafe, and let's not forget our Christmas Dinner on December 19 at Addington Raceway which was a great success.   Where else can you watch greyhound racing in such comfort while eating a Christmas meal?   -- George Ross

LETTER TO THE EDITOR

I am a suvivor of polio -- I got it when I was three. I am now almost 70. I had to have my left knee replaced and this year I fell and broke my leg. I had to have a plate  put in the knee that I had replaced.  Now I can't walk without a walker and I just got a full leg brace.  It is very difficult to do anything.  Being an independent woman I can't stand the thought of not being able to do the things I have done all of my life.  My husband has taken over all of the household things.  I wonder if anyone else has had this experence.

June Mings
28  Violet Drive, Hendersonville North Carolina, USA

   (More than a  few here will empathise with the major change in your life, June, and wish you well.)

Medical Matters

READY FOR A JOINT REPLACEMENT?

Aspects polio survivors should think about (From orthopaedic surgeon Geoffrey Horne’s address to Conference ‘06)

For polio survivors, having a hip or a knee joint replacement raises issues outside the usual norms.

    Professor Geoffrey Horne of the Wellington School of Medicine, keynote speaker at the PPSS 2006 Conference, told delegates that the requirements for successful joint replacement in patients with polio and some other neuro-muscular impairments usually included “normal” bone and muscles.

   However some patients might have significant osteoporosis from disuse or from drugs, and few post-polio patients had “normal” muscles -- particularly around the hip -- and without them there was greater risk of dislocation.

   “The hip joint is held by the joint capsule, muscles that cross the joint, and other body parts that function normally,” he said.  “If any of these are missing, it has to worked around.”

   Somewhere between 30 to 80 percent of polio survivors experienced new neuromuscular symptoms at least 15 years following stabilisation of the initial disease. He found variation in the reported incidence “interesting.”  With women, the symptoms were more common longer after the illness. The prognosis for five years following the diagnosis of late effects was increased weight gain and diminished oxygen uptake.

    When getting ready for a hip replacement patients should consider other functions such as arms and hands for handling crutches, knees, chairs, stairs and standing security.

    Most hip replacement patients don’t use crutches, but in one study 50 percent of post polio patients used them. For successful hip replacements you needed to have good knees and good quadriceps to get out of chairs and climb stairs. The weaker the quadriceps, the greater the risk of dislocation although this could be minimized by specific surgical techniques.

    Studies of US and Swedish post polio syndrome patients showed a drop of approximately 10 percent in quadriceps strength over three years.  Prof Horne suggested it was worth trying physiotherapy to improve muscle function.

    For wheelchair patients, the situation changed, he said, and the question became “What do you want to achieve, short of replacement?” A different operation might be more helpful. 

    Patients needed to have realistic goals. The operation was great for relieving pain, but post polio syndrome patients had a different type of pain that might not be changed. Gait might improve, and also walking endurance if pain had been a limiting factor.

     MORE PROBLEMS POSSIBLE
      WITH KNEE REPLACEMENT

    Total knee replacement could be more problematic than hip replacement, said Professor Horne. Quadriceps weakness would not be improved as a rule. It was great for pain relief but technically a more complicated operation because osteoporosis was more difficult to deal with  and angular deformity was seen with profound weakness. Back knee deformity (from a hamstrings problem) would not improve, however being bow-legged or knock-kneed could be improved.

    Professor Horne said increased BMI (body mass index) should be avoided.  If a patient had arthritic pain when bending the knee, a partial replacement might work for controlling the pain, he said.

    Rehabilitation following total knee replacement was always slower than for total hip replacement and the end result might not be known for several months.  In both knee and hip replacement patience in the recovery phase was essential.

BRILLIANT ANNIVERSARY REUNION  FOR FORMER WILSON HOME PATIENTS

Polio survivors, spouses and family gathered at the Wilson Home in Takapuna in November to celebrate the 50th anniversary of the historic Salk Vaccine -- introduced in New Zealand too late to prevent them catching polio.

It was the "most wonderful” celebration, said Doreen Chandler, Auckland Post-Polio Support Group president and main organiser of the event which was attended by 100 people: "Many people, who were young children who lived and had treatment at Wilson Home, had a beautiful day."

The home, for babies and children with disabilities, was founded in 1937 because of polio.  It is a stately white home, high on the cliffs of St Leonard's Beach, surrounded by mature trees and splendid gardens.  It was a place of care and treatment for many polio patients in the 1940s, 1950s and 1960s.  Some lived there for months, some for years until their bodies recovered sufficiently to go home and go to school.

Wilson Home Records:  Some Wilson Home records are being disposed of by Waitemata DHB.  If you were a patient at Wilson Home and want your old records, you can request them.  Either email the following DHB contact, Anne.Andrews@waitematadhb.govt.nz , or telephone 09-488-4688 extension 5877 and ask for your records.

News Briefs

*    Kapiti Coast Disability Reference Group had something to celebrate recently -- although members' pleasure at getting something done was tempered by the time it took to achieve it:  Higher-visibility strips have been installed on stairs at a Council library to help visually-impaired users.  But it took three years to get them.  The group agreed to express appreciation to the Kapiti Coast District Council.

*    DVD copies of the Wilson Home reunion are available from Noel Morris, PO Box 12-357 Hamilton, or can be ordered on the internet ($15 each for the 2-hour DVD) through the Waikato PPS homepage.

The address of the website, which also hosts  Edith Morris’s “Talking up Disability”  programme on Access Radio in Hamilton, is catchword.co.nz/pps.   Edith Morris’s programme is sponsored by the Disabled Persons Assembly.

If you have Broadband you can listen to some of her interviews.

* One of the fascinating performers in the Cirque de Soleil “Varekai” performance in Auckland recently was a well-built, acrobatic dancer who had polio as an infant in Germany.  Now a veteran of major stage entertainments, Dergin Tokmak’s “limping angel” role on crutches was a memorable part of the Cirque de Soleil show.

* Wheelchair users in the Paraparaumu Beach area can now use their cars (when displaying current CCS disability-park cards) to reach the firm sand area for 150 metres each side of the boat launching area, which is generally closed to vehicles other than those involved with boat access.

* World Health Organisation director-general Dr Margaret Chan has called an urgent meeting in Geneva on polio eradication.  All major stakeholders are to be consulted and asked to critically examine the capacity to tackle operational and financial challenges to complete polio eradication.

Staying safe: RISK OF FALLS OUTLINED FOR POLIO SURVIVORS

Falling-down guidelines for people affected by polio were outlined by and discussed with two experts in the field at Conference ‘06.

    They were Chris Paul of Arthritis New Zealand and Lizzy Rombel, falls prevention coordinator for Sport Wellington.

    Chris said fall factors included lower limb weakness, poor balance and neurological factors . . . as well as usual environmental factors.

An exercise programme which helps guard against falls starts very gently and works up to half a hour a day of several simple exercises.  They are head turns (five times each side), twisting the body, extending the back, ankle movements, front knee strengthening and strengthening the back knee by standing behind a chair and kicking backwards.

    She said Arthritis NZ (0800 663 463) might be able to refer people with a fall problem to an area group for gentle, social exercise.  She recommended at least two walks a week and using a pedometer to discover how many steps were taken in a normal day -- and increasing them gradually.

    Lizzy Rombel talked about the Greater Wellington Stay on Your Feet Programme, which also uses the Otago Exercise Programme mentioned by Chris.  She said weak muscles could lead to osteoporosis in the bones they supported, so the message was “use the muscles you do have, but don’t over-use them”.

    She advised that to avoid falls one needed to develop muscle strength and balance in a slow, gentle way, to help maintain range of movement.  Also practise moving your head in different directions, to get the inner-ear balance organs used to different positions.

    “Work within your own ability -- hang on to something stable. To exercise for strength, you need low-impact exercises,” said Lizzy.  Tai Chi was a proven activity that would help prevent falls.  She urged people to find an exercise regime that suited them and fit it into their daily schedule. Exercise should be balanced with rest.  Energy should be conserved and activities limited if they caused pain and fatigue. People should check with their doctors before tackling an exercise programme.

    Points that emerged in discussion included the comment that while most post-polio people had experienced falls, some of them serious, many were too young for a programme aimed mainly at the over-80 age group.  Speakers suggested lobbying the programme providers about our specific needs.

    If they could, people should practise how to get up when on the floor.  Personal alarms were suggested, and it was important to stay calm:  “When you’re down you’re safe and can concentrate on getting help.”

TAKE IT EASY ON YOURSELF
Tips and tricks from readers

*  Problems moving around the garden at low level?  Try two good stools so that you can transfer from one to the other and then move one stool for a further gain in territory.  Watch out for stools that can be unstable.

The best design is an old fashioned stool made of 12mm exterior ply with splayed sides and legs and a grip-slot in the top (pattern available from Editor).

* Raylee Murphy’s dog is having a wonderful time, thanks to a $5 ball thrower from The Warehouse: “Its about 45cm long and there is a cup which picks up the tennis ball.  Then I throw it. The dog brings it back and drops it -- in theory.. Mine doesn't drop it so I play with two balls with one ready to go.  He drops the first so he can retrieve the next one. I don't even have to bend down to pick up the ball. Best of all I can exercise my dog in my yard until he just wants to sleep.”

* If you have a powerchair provided through the health system it could well have deep-tread rear tyres that damage the pile on carpets.  OTs tend to say they're needed for outside use, which is right.  But if your use is all inside the house there are more carpet-friendly tyres available.  The ones we've seen come from Rex Products, cost $12 each.

* Your local Disability Resource Centre shop has access to a great variety of aids.  Some are as simple as the “Jar Key”.  Costs little.  Gives a lot of jar-opening help.  Used gently like a bottle opener it relieves pressure under the lid, enables you to unscrew a stubborn top with ease.

NEW ZEALAND'S KEY ROLE IN UNITED NATIONS DISABILITY TREATY

The United Nations has adopted a convention on disabled people's rights, with New Zealand delegates taking a leading part in helping agreement on previously unresolved issues.

    Now it is intended that New Zealand will be among the first countries to sign the new convention which is due to be ready for ratification by the end of March.

    Foreign Minister Winston Peters says the convention is the first new comprehensive human rights treaty of the 21st century:  "New Zealand can be proud of the leadership role it provided throughout the five years of negotiations. States and disabilities organisations have worked together since 2001 to get a worthy and comprehensive outcome.

    “It is is a process that will set the benchmark for future standards and action."

    The convention establishes recognition of the world's 650 million disabled people. It is a blueprint aimed at ending discrimination and exclusion of physically and mentally impaired people in education, jobs and everyday life. 

    It requires countries to guarantee freedom from exploitation and abuse for the disabled while protecting rights they already have . . . such as ensuring voting rights for blind people and pro-viding wheelchair accessible buildings.

    Don MacKay, New Zealand's UN ambassador who chaired the ad hoc committee which drafted the new convention, said it would be a "travesty" if people with disabilities again find themselves at the back of the queue for government attention.

    Disability Issues Minister Ruth Dyson said an intensive resource had been committed to the convention: "We now need to turn this effort into practical reality and ensure the convention is made to work effectively for disabled people."  Minister Dyson's office told Polio News that a Cabinet paper will be prepared confirming New Zealand's ability to ratify the convention.  It will examine what needs to be done to meet the convention's requirements -- for example, any amendments to existing NZ legislation.

    All government departments and organisations will be asked to examine their policies and procedures to ensure they are able to meet the terms of the convention.

QUEST FOR UNIQUE MEDICAL BIOMARKER FOR PPS

An American research institute has been awarded a grant to find out whether there is a unique "signature", or disease biomarker, in the immune systems of people with post-polio syndrome.  The grant has been announced by Post-Polio Health International in St Louis.

    Researchers at the University of Arkansas for Medical Sciences already are on the track of a unique post-polio syndrome trace in the blood of PPS individuals.  They have detected an increased presence of specific cells in a small number of PPS donors.  The new research award will fund a pilot study to further develop the project.

   "Although the research is in its very early stages and our initial results need to be rigorously tested in a much larger group of individuals with PPS, a biomarker for PPS that can be potentially measured in an individual's blood should enable a more rapid and more definitive diagnosis of this debilitating disease," said a spokesman for the university research team.

    Diagnosis of PPS is difficult at present because it is based on past history which may be incomplete or dependent on recall, said Joan Hedley, executive director of Post-Polio International: "The diagnosis is complex and unreliable because many symptoms of PPS overlap those of other diseases including osteoarthritis, fibromyalgia, hypothyroidism and a number of neurological conditions.

    "Finding a definitive test for PPS would not only help with a diagnosis but also would help develop potentially more effective therapies."

SCARS OF EARLY POLIO TOOK A LOT OF HEALING

For all of his adult life and for all but 10 years of his childhood the late Denis Hogan lived with polio -- originally as a survivor of New Zealand's 1936-37 epidemic and in later life as a pivotal figure in the Post Polio Support Society.

He described his polio years in Christchurch Hospital as a "hugely important" time in his life:

"Medically, little was achieved after the initial period.  But the two-year separation from family and friends and the institutional nature of the care left scars which took a long time to heal.

"Many of the effects are still there," he wrote not long before he died in November last year.  His story was unfinished.  It began two days before Anzac Day, 1937. . . . "I got out of bed and fell to the floor as my right leg collapsed beneath me.  I called 'Mum, I can't stand', which began a day that ended with a diagnosis of infantile paralysis and admission to Christchurch public hospital.”

Denis was 10 and New Zealand's 1936-37 "infantile paralysis" epidemic had been running throughout that summer, with 816 cases and 39 deaths.  Schools didn't reopen after the summer break until March.  Denis was the only pupil at Addington School to contract polio.

“I had been off colour and feverish for the previous two days and had been kept home from school.  A week earlier I had complained of sore legs and had developed a slight limp.

"My mother attributed this to playing marbles at school and kneeling on damp ground.  She was quite Victorian in her attitudes to health and safety and was very protective."

His early days in hospital left strong memories:

"I spent an uncomfortable night in isolation. The following day I was transferred to an isolation area of Ward 13, a women's medical ward, where two cheerful, khaki-coated men from the splint department measured me for a full body frame.  It was made from a dull-red plastic material, lined with felt.

This total immobilisation was standard practice then and was designed to prevent twisted limbs.

"There was no visiting.  I can remember my father being allowed to poke his head through a barely open door and speak to me from a distance, asking if there was anything I wanted.  There wasn't.  There was nothing I could do."

Out of isolation and out of the frame for brief periods, he found it difficult to move:  "My arms and legs recovered quickly.  My right leg was completely paralysed and my left weak -- but I could move it."

Towards the end of 1937 callipers were made and fitted into boots which had to be bought by his parents.  Then came the first faltering steps with crutches and helping arms, along with massage and exercise in a "bubbly" bath.

Education had been on hold all year, and at the beginning of the 1938 school year two fulltime teachers were appointed and classrooms were set up at the end of Ward 14 -- which became a real community.

"During my stay there were three sisters in charge of Ward 14 -- Sister Slade, Sister Giddens and Sister Orbell, who went on to become director of Nursing in the Department of Health.

"The nurses loved being rostered there as it was easy nursing -- the hard parts were done by splint and massage departments.  The 'whole child' was well looked after.  We had the school, scout and guide leaders came in once a week, and our spiritual needs were looked after by the Salvation Army.”

    LIFE-LONG INTEREST IN CRICKET

Time passed.  The polio children went on outings, Denis's parents took him across to Hagley Park to see the senior cricket competition and he developed a life-long passion for the game.

"And so a strange, institutionalised life continued and seemed never ending.  After two years my parents decided that they wanted me home.  This was agreed to but I came to the ward daily. during the week for school and treatment.  Transport to and from the hospital was by courtesy of the Rotary and Business Men's clubs."

There was sometimes an anxious wait for the rostered driver of the day:  "I now realise how unprotected two years of institutional care had left me. I had not developed the resilience of the average 12 year old boy and it took some time to shake off the lack of independent thought produced by two years of having every decision made for me."

Came the outbreak of war in 1939 and "almost overnight" the polio patients were discharged to make room for soldiers from Burnham Camp. Denis went by wheelchair to Christchurch South Intermediate, then Christchurch West High School by tram, leaving his chair in the yard of the corner dairy near the tram stop.  He said in later life that his parents' decision that he would go to school and not be educated at home was "hugely important" to him.

The other notable factor in his education years was the headmaster's announcement to the school, before Denis started in February 1940, that a boy with a disability was to start school next day and that consideration was to be shown to him.

Typical of that consideration was keeping Denis's classes to the ground floor rooms of the two-storey building.

"Fortunately West had a system of home rooms and travelling teachers. The science laboratories though were upstairs and there was no choice but to slowly climb the stairs with the help of Maurice Jenner's arm."

Denis had known Maurice at primary and intermediate.  They were both placed in the academic stream at high school and became close friends.  Maurice was also unable to take part in sport and both became librarians at high school.

Denis Hogan left school in 1943 and set his sights on a science degree at Canterbury University.  He completed it in 1948, started work at the Dominion Laboratory in 1949 and after further studies in microbiology he commenced a career in analytical work in what was to become the DSIR.  He retired as Deputy Government Analyst in 1989 and was registrar of the NZ Institute of Chemistry for 30 years.

    HOGAN CHEMISTRY AWARD

His obituary in Christchurch's The Press noted:  "Hogan lived just long enough to receive the NZ Institute of Chemistry's 2006 Award for Chemistry Education and to hear that the award would henceforth be known as the Denis Hogan Chemistry Education Award.  His QSO stands beside other awards, including a Royal Society Medal and the Marsden Medal of the NZ Association of Scientific Workers."

His widow Helen, who survives him along with sons Tim and Seamus and six grandchildren, says Denis suffered great pain but remained uncomplaining, equable and altruistic:

"He was the most unselfish person I ever met."

Denis Hogan QSO -- polio leader and noted scientist

"LOBBY DHB MEMBERS" TO IMPROVE ACCESS TO QEH

QE Health has clarified its current access and funding details and its Patients Association has outlined methods of seeking treatment at what is a unique treatment and rehabilitation centre.

"The way to access QEH treatment is through funding from your District Health Board," comments the association.  "Lobbying your DHB members to make them aware of your treatment needs is one course of action.  Requesting a funding allocation for treatment at QEH is another."

The care "model" at QEH is primarily a holistic approach, working from the "inside" out to achieve change.  The patient and multi-disciplinary health professionals work together to develop and implement an individual treatment plan.

The alternative is a more usual clinical/acute "outside-in" model requiring action from others to remedy or restore to normal.  Diminished access to QEH treatment has followed in the wake of the DHBs being individually funded to provide rheumatology and rehabilitation services.  Each DHB decides whether funding will be allocated for QEH treatments or kept for use in its own area.

"This method is limiting patient access to QEH and also causing concern to people who have previously received and benefited from inpatient treatments at the hospital," says the patients association.   "These changes are impacting on people's lives and also the services at QE Health. "

Following is the latest summary of access from the North Island DHB areas for rheumatology and rehab services:

Northern - Auckland, North Shore, South Auckland and Northland:  No contract. Publicly funded access unlikely unless approved by the DHB's clinical director.

Waikato - Hamilton, Coromandel, Taumarunui:  Patients with an existing relationship with a QEH rheumatologist may continue to be referred by their GP or a specialist, directly to QEH.  New referrals must be approved by Waikato DHB Rheumatology for onward referral to QEH.
QEH senior physio Rachel Ellis and patient.

Lakes - Rotorua, Taupo, Turangi:  GP or other specialist referred directly to QEH.  Eligibility generally for those aged 15 and over.  Children under 15 eligible only if referred by a paediatrician.

Bay of Plenty - Tauranga, Whakatane, Kawerau, East Coast District and Te Kaha:  As for Lakes DHB.  Funding was reduced by a third in 2006.

Tairawhiti DHB - Gisborne, Tolaga Bay, Hicks Bay:  QEH referrals accepted only if approved by visiting specialist Dr Rodney Waterworth.

Taranaki - QEH's contract with Taranaki DHB expired in December 2006.  Referrals historically vetted by DHB with very few being referred on to QEH.

Mid-Central - Palmerston North, Whanganui, Hawkes Bay DHBs:  Referrals accepted from GPs, general physicians or other specialists.

Central - Capital & Coast, Hutt, Wairarapa:  Access as preceding, but Wellington, Hutt, Porirua and Kapiti and Wairarapa sub-regions accepted only with a previous clinical relationship with QEH before July 1 1998.

WHEELCHAIR-FRIENDLY DUAL-LEVEL KITCHEN

When Des and Ethne Crabb bought their house in Paengaroa it was, in Des's words, "just a typical box". 

So they modified it to make it wheelchair friendly -- wider doors, new large master bedroom, wet-area shower and spa bath, drive-in wardrobe, two decks, four ramps . . . but the kitchen was to be the real challenge.

    Four years later, it's a model of dual-level adaptation.  Both Ethne, who is wheelchair-bound, and Des use it to prepare and cook meals and for all the associated tasks.  Keynote items in the Crabb kitchen include two sink benches with the lower, wheelchair-accessible one at right angles to the standard-height sink bench.  Flanking the low-level sink are a gas hob and cutting board and, on the right, microwave and wall ovens. 

    There's a large, country-size pantry with bifold doors and low-mounted handles.  On the wall opposite the low-level sink bench are side-by-side fridge and freezer and one of the most innovative of the Crabb kitchen's features -- a cupboard-like door which conceals a rolling unit that pulls out on casters and moves anywhere around the kitchen. It carries a mixer, food processor and bread-maker.

    One kitchen wall was moved out 500mm to accommodate the new design. Des Crabb drew it up then went shopping for the components.  Nothing, alas, was standard: "We had a lot of trouble with manufacturers, mainly getting them to think outside the square," he says.  "Everything is in modules these days and there are quite a few innovative ideas in this design."

    It took two months for Des to install, mainly due to delays caused by units made incorrectly and having to be re-made.  The moral of this story and a warning to others -- always use known and reputable kitchen manufacturers, not backyard garage cowboys. “It has all been worthwhile.  It's a kitchen in which we can both work."

    Ethne agrees:  "It works well, I am very happy."  Although Des doesn't  see it as stylish, the finished working kitchen looks very impressive and is a model of what can be achieved with enthusiasm, persistence and practical skills.

Polio growth countries in 2006 compared with 2005

Nigeria            1090        749
India                  655          64
Pakistan                39          27
Afghanistan            31            7
Kenya                  2            0
Bangladesh            17         0
Niger                11            9
Republic of Congo        12            0
Namibia                19            0

DIRECTORY

  The Post Polio Support Society of NZ is an incorporated society dedicated to providing support for people who have had poliomyelitis.  It can provide information and assistance for all polio survivors and their families, whether or not they are experiencing problems at present.  For information about membership and local support group contact numbers, freephone 0800 4 POLIO (0800 476 546).

  The Society's website address is www.postpolio.org.nz.  The mail address is: Post Polio Support Society NZ (Inc), PO Box 249, Oamaru.     Other contact details:

  President: Ray Wilson, 29 Aln Street, Oamaru 9400 (Tel/fax 03 434 6405.   email rayl.wilson@clear.net.nz).

Secretary-treasurer: JB Munro, 120 Factory Road, Mosgiel 9024 (Telephone 03 489 1995, fax 03 489 1996, email jbmunro@xtra.co.nz)

The Society’s Board of Management meets regularly either physically or by telephone conference.

The Society's newsletter, Polio News, is published four times a year (March, May, August, November) and is sent to all members.  The Editor is Jim Webber, 103 Amohia Street, Paraparaumu 5032 (Telephone 04 905 4148, email ferris.webber@paradise.net.nz).  Contributions are welcome and the deadline for copy is the 15th of the month before publication.

Disclaimer: Opinions expressed in the newsletter are those of the writers and not necessarily those of the Society.

Acknowledgement:  This newsletter has been paid for by a grant from the Lottery Grants Board and the JR McKenzie Trust, to whom the Society expresses its thanks.

Deadline for May issue:  15 April
Editor Polio News: Jim Webber, 103 Amohia Street, Paraparaumu 5032. email ferris.webber@paradise.net.nz