Polio News

Newsletter of the Post Polio Support Society NZ (Inc).
11 Wyn Street, Christchurch 8002, New Zealand.

In this issue

Editorial
President’s report
Branch reports
Personal Stories
Brian Batson
Bill Dempster
Joyce Oswin
Look how far we’ve come
Poem: Survivors
Medical matters
1. Letter from Richard Bruno
2. Medications - use with care
3. Energy conservation and work simplification
Literature available
Directory

March 2006

Greetings and a happy and healthy New Year to you all.

There is in fact nothing new on the horizon for 2006. It looks as though we will continue to do much the same activities and battle the same old problems. At least our brain cells should not rust for lack of use. Access to QE Health, Rotorua and liaison with NZCCS will be the main issues to be confronted. The AGM and mini conference will be held in Wellington in September and we can look forward to our usual informal and friendly get together.

In this issue we feature useful articles on energy conservation and care with medication. Permission to reprint these has given by our Australian cousins to whom we express our thanks.

There are six strong post polio societies in Australia, one in each state. They are all very active in supporting their members. We maintain good relations with all of them. It would be great if we could link more formally with them and have an Australasian voice for polio survivors. This something for both countries to work on.

Denis Hogan, Editor

President’s report

Greetings for the New Year

Hi all, I hope you have all had a pleasant festive season, and that you are ready for the coming year.

Ongoing Dialogue

Since I last reported to you in the November issue not too much has transpired of note. Suffice to say that the dialogue between ourselves and the Assistant Ombudsman in Christchurch is still ongoing. It involves seeking answers from Ministry of Health on their reason for the blanket approach to denying us access to Queen Elizabeth - Rotorua as a Centre of Excellence for Polio Survivors.

CCS Dialogue

Likewise the talking with CCS - Viv Maidaborn & Staff has not progressed very far since or 'Think Tank' meeting held in Christchurch on 2nd December 05. We await the report from Viv that she is writing to summarise the discussion that we had that day.

Homework In Oamaru

On the home front yours truly has spent 23 of the past 30 days swinging on the end of a paint brush. Comes time when outside influences have to take a back seat whilst the Home Front gets some long awaited attention. Thank goodness for the kindness of the weather man who has blessed us with a spell of painting type weather conditions.

Toll free contacts

We are still receiving contacts through the 0800 Toll Free number. The latest was from a Topeka contact who has several family members as survivors from the epidemic years, including one living in Perth Western Australia.

Grants

We were blessed with grants from Lottery $6000.00 and McKenzie $8000.00, and it has to be realised that without the 'Annual' grants the Member Subscription would need to be increased by more than $15.00 (fifteen dollars) per person. We need to be aware that Grants from whatever source could be cut tomorrow, and this would then require a rethink of the Society and its policies.

Hanmer Annual Retreat (October)

As one of those who has attended this retreat for a number of years now I must say that its demise would be most unfortunate, but that is a decision the Christchurch Branch Management will have to make. This annual week of R.& R. has been and should always be Christchurch's decision. I can only ask that due consideration be given for those who attend and thus benefit from the week / 5 Days time out.

Ray Wilson, President.

P.S.

Greg Cochrane Advises. I have just received a report from Greg Cochrane and Irene setting out his positive approach for the 2006 year. Good to have you back Greg, and looking forward to many more such reports in the not too distant future. Ta Greg and Good Luck with the resolutions. R.W.

Branch Reports

Northland News.

Greetings again from Northland. We hope that 2006 is going to be a good year for all.

Our group started the new year with a pleasant luncheon out at Glenbervie garden cafe. A small number attended because of other commitments,but we have an interesting programme planned for the year and hope to see more members next time.

We look forward to our annual visit to Kerikeri in March to share with P.P. members there (always an enjoyable day!) and more ''social outings" are planned for April, June, August,October and November.

We welcome enquiries and new members at any time. Phone Betty on 09 4343357 or Ruth on 09 4352168.

Waikato

The 50th anniversary of the Salk Polio Vaccine was the sole focus of the Immunisation Advisory Centre’s (IMAC) display booth at the Parent and Child Show. This Expo was held in Auckland on 28 to 31 October 2005, and was one of 250 stalls exhibiting everything from baby food, baby equipment, toys, clothing and how to be good parents. In the middle of all this was the striking IMAC display bringing a reminder of polio history before the days of mass immunisation.

The huge black and white posters of polio children where supplied by the Alexander Turnbull Library. These posters showing limbs in plaster, nurses attending their little patients, and children being lifted into ambulances, were in stark contrast to the colourful plastic displays of the other stalls.

Making an even more sombre impact was the coffin-like iron lung on loan from MOTAT (Museum Of Transport And Technology). Natalie Desmond of IMAC commented: “The iron lung was a huge draw card. It stirred very strong emotions, and many young people came up to recall personal family stories. But the knowledge of the disease is getting lost. My overall impression – It seems to me every family in NZ was touched by polio”.

Greg Cochrane of Tauranga and Edith Morris of Hamilton cheerfully represented the Post Polio Support Society. Greg illustrated his story of living with polio from childhood with power point photos. It was a powerful, straightforward and sometimes humorous presentation.

Edith’s story, along with an outline on the development of the Salk vaccine, was printed on a handout sheet entitled “Look how far we’ve come! - Celebrating 50 years of polio protection”. This was compiled by IMAC, and the National logo for our Post Polio Support Society was displayed on it. All this helped to raise the profile of polio survivors, immunisation, and the 50th Anniversary of Jonas Salk and his team’s vaccine.

Thank you Natalie Desmond and the staff of IMAC for your enthusiasm, and for inviting us to be a part of your project.

by Edith Morris

Western Bay of Plenty

Greetings from the beautiful Western Bay of Plenty.

Our branch had a good 2005. We met with our Rotorua and Whakatane post polio friends and enjoyed a lunch, game and chatting together.

Queen Elizabeth hospital was home to a number of our members for the two-week course of treatment and without exception each person came home feeling better than before they had gone. This is such a fabulous service and we are lucky to be so close and have such easy access. Lorraine Hartley is the best nurse to talk to if you have any questions about the programme as she is in charge of the Arthritis and Post Polio intakes).

We decided to advertise ourselves on local radio stations, on the free community notice boards, this year in order to make ourselves more widely known. We have had no new members from this yet but who knows in the future!

Harbourside restaurant was the venue again for our Christmas do. The restaurant has a beautiful view over the harbour and caters well for wheelchairs etc. The food was great, the company fun and the competition for the prizes from the Christmas game was interesting. Even grown men like to win prizes don't they Des and Ace!!

We wish all of you a prosperous new year from the Western Bay of Plenty Branch.

Gill Raine, Field Officer

Eastern Bay of Plenty

Meeting update

A lovely shared lunch on February 1 gave us the opportunity to catch up on each other's news over the summer break. At the formal meeting we discussed plans and came up with a long list of things do over the next year.

Members from the Tauranga and Rotorua support groups are welcome to join us. Group meeting on 5th April at 12 midday at the ORCT. After a shared lunch we will have our official meeting with a guest speaker.

Project Hope

Our president, Jim Savage will hold a raffle stall in Kawerau to raise funds for Project Hope behalf of the EBOP Post Polio Support Group. He is looking for volunteers who are willing to share this with him. If you are available please telephone Jim on 323 8935.

Transport to medical appointments

The DRCT now provides a volunteer driver service to transport clients to their medical appointments for a reimbursement of the petrol costs. For further information regarding this service please contact Karlene at the DRCT on ph 307 1447.

Eve Rimmer Games 24 -26 March 2006

This is an event not to be missed. Enter yourself or come and have a look. The following events will be represented: Track and Field including Shot, Discus and Javelin, Swimming, Bowls, Equestrian, Boccia, Golf, Snooker, Darts and the Wheelchair Road Race. Official entry forms are available at the DRCT - for more information contact Karlene at the DRCT on ph 307 1447.

Gisela, Post Polio Field Officer

Nelson - top of the south

Hello to everyone out there.

Summer is moving rapidly on and there's a little touch of Autumn in the air at night ?? Looks as though another year will gallop on past. We hope a wonderful Christmas and a restful holiday was enjoyed by all.

Our Christmas luncheon held at the Smugglers Cafe drew an attendance of 12 so I do hope we can muster up a few more members for this years functions in June/July and again in late November. I do encourage my group at this stage to keep your subscriptions to the National group up to date. It is only $10 and ensures that you receive this Newsletter with all it's news and updates. It's the only way we all keep in touch.

On 23rd February Rex and possibly Ian Frost hope to attend the Human Rights Commission meeting in Nelson on " THE ACCESSIBLE JOURNEY " looking at recommendations for changes to footpaths, bus stops, public transport, etc., not only for the disabled but the elderly and the mothers with little children in pushchairs and prams. I rather hope it's not another one of these all " talk " and no "do" affairs !

It remains for me to wish you one and all an especially good year with a very big helping of GOOD HEALTH. Take care.

Jenny Kissane.

Christchurch

A stunning summer, I think you will agree, so we should all be relaxed and ready for whatever 2006 can throw at us.  

Many Canterbury members remained in contact over the holidays, not only by friendly phone calls but also by outings such as Christmas dinner and a visit to the Court Theatre.  

Sadly there was also the loss of another valued member, Helen Watson.

The Xmas function this time was held at the Addington Raceway which enabled diners to watch the greyhound racing from a comfortable viewpoint while savouring their choice from the menu.  

The committee have no doubt been busy whipping up an exciting program for the coming year and it is no secret that our first meeting for 2006, held in February, was centred on good advice about how to avoid falls, a subject dear to the hearts of most of us.   

George.

North Otago report

North Otago members enjoyed a surprise end of year function taking the form of the delayed Trish's Tiki Tour.

We had the guess the venue for $1 as usual which was won this year by National President Ray Wilson.

This time we did not end up at a restaurant or well known venue but instead Trish had organised a caterer and the group dined in the Lounge room of the Papakaio Sports stadium, up the Waitaki Valley. Ray guessed Papakaio and was the closest entry to win. It was a lovely meal which everyone enjoyed. We had two local women come and talk to us about their soap making business venture before the meal and between courses. Lots of Christmas buying was done as well.

After the meal we drove around the road to look at a tastefully restored 1860 historic cottage which is also used as a homestay. It was a excellent way to finish off the afternoon.

To start the new year we had a mystery guest speaker therefore members had to come along to the February meeting to find out just who it was. Steve Graham, former bank manager and Whitestone Taxi Company owner is now very involved in the rapidly growing local cherry industry. He brought along photos, samples of the bags the trees are grown in, plus a two year old cherry tree. Judging by the interest shown and the questions fielded, it was a topic that really took the members interest. We all learnt heaps but sadly no samples were available as it was in between picks.

Next meeting is to be held on Sunday April 2nd, ( so the Saturday golfers will be able to join in) at the Moeraki Boulders restaurant. It seems that our members love to dine out so that is what we will do.

Otago

Another year, and suddenly, we have jumped from a Christmas meal at the Shiel Hill Tavern where there is a lovely rural and ocean view as a backdrop to our conversation and food to a new year barbecue on our lawn.

It was a still, warm day and most people sat outside until a rumble of thunder round the hills sent everyone inside just before afternoon tea. The expected downpour didn't happen but no one noticed anyway as the conversation just continued seamlessly.

It is heartening to see the Dunedin City Council at last facing up to some of the problems of disability transport. The city bus fleet acquired several "kneel down" buses two years ago but if you caught one to town there was no guarantee you would find another to take you home.

Donna-Rose McKay the University of Otago Disability Manager and Patsy Wakefield, Disabilities Assessment Officer brought the transport issues to the Human Rights Commission and are working hard towards a solution.

We owe them our thanks.

Otago wishes all groups a Happy New Year.

Diane.

Personal Stories

Polio 50 years ago - Brian Batson's story

Keen on sport

The year is 1955, late October and the days are becoming longer. I'm a lad of 13 years who loves sport and starting to take more notice of the big wide world out there.

I had a good winter season playing rugby league and now am well into the season playing softball.

For some reason my body is feeling tired. I'm thinking, perhaps playing a lot of sport causes it. I need to train more often. Now is the time, I thought, to start doing some exercise.

I lie down on the grass with my legs in the air moving them as if I'm riding a bike. Mum's coming down the steps with a basket of washing and suggests I get up off the grass as it could be damp.

"Boy I feel tired" is my reply and she says "Well, after tea have a bath and an early night."

(Males know best, I thought) So I go for a run round the block. Getting half way round, I find I have to walk the last part. When I get home I say to Mum "I think I'll will have an early night" She smiles and I bet she thinks, Mums always know best.

First signs of polio

The next morning, Friday, I feel more rested but am told to stay home from school. However I need to go today as we are half way through exams. We have them in the morning but by lunch time I develop a temperature and a headache. That afternoon I spend the time in the sick bay. On arriving home Mum gives me some Aspirin and tells me to stay in bed.

I am trying to get out of bed the next morning but when I try to stand, I fall over. Dad hears the bang and after explaining what happens he helps me back to bed.

Mum, she is on the phone ringing the doctor. The Doctor has surgery this morning but will come after lunch. On arriving he speaks to Mum and then says "Let's have a look at you young fella" "Mmmmm" he says and wants a second opinion and phones a specialist.

The specialist does his examining and says it may be polio and I need to go to hospital straight away. The ambulance arrives and I am in Auckland Hospital by 6:00 pm.

Hospitalisation

We go into a small room. I am put in a hospital bed and told the doctor will be along shortly. The doctor arrives and soon completes his examination. I remember saying to him "will I be better by Saturday? I am captain of the softball team and we are playing a game for the championship". His reply is "well, we will have to wait and see." He then tells us he will have to put a needle in my spine and it might hurt a little bit. (I later found out they call it a lumbar puncture - taking fluid off the spine) Man is he right. It does hurt. Mum is pretty upset by now but we say our good-byes and I am moving to another room.

By this stage I am very thirsty and asking for a drink. A cup full of orange juice arrives but I can't sit up so it is tipped into a cup with a spout. Boy I really need that drink.

Waking the next morning, man I thought, what a bad dream I had in the night. I dreamt I was in hospital and couldn't move. But now I want to scratch my nose and find I can't move my arm properly. This brings me back to reality. This is not a dream. I pinch myself. It hurts.

A nurse arrives as I am shedding a few tears. She has breakfast which she puts on the cabinet along side the bed. Sister then appears and says "Have some breakfast, then we will give you medication so you can rest."

I mostly sleep for the next week or so, only waking up now and then to see a nurse sitting beside my bed. At one stage they put me into the iron lung but decide if my breathing did not deteriorate I will not need to go in it again. I am pleased because it gives me the creeps.

Treatment

I am introduced to the Sister Kenny Treatment after a time. It consists of hot packs of steaming material wrapped around my body from my shoulders to my ankles. Then my whole body is wrapped in a sheet. I have this twice a day. This continues for about 2 weeks along with exercise from the physio.

The next step of treatment is leaving this ward by ambulance to go to the main hospital block.

Monday to Friday I have physio work in the morning and down to the hospital pool to do water exercises in the afternoon. It is great going to the main block because it gets us out in the fresh air a bit. And we can have visitors every afternoon instead of just at the weekend. On Saturday morning I have hot packs again and no more treatments for the rest of the weekend.

Home

For about 8 months this pattern of treatment continues. During this time I graduate to getting up on my feet with half calipers and elbow crutches. Then one day the doctors says I can go home. I will come back daily as an out patient. Man it is good to be going home and catching up on Mum's roast dinners again.

2: Bill Dempster

I think it is important to sound a warning re PPS and its effects on muscle weakness in muscles seemingly not affected at the time of the original attack. There could be problems other than PPS responsible for such weakness deserving investigation.

My own personal experience will illustrate the point I am trying to make. As a result of birth trauma I have congenital cerebral palsy affecting both lower limbs. I adapted to the point I was able to lead a reasonably "normal" life, walking without sticks albeit with an abnormal gait that was restrictive and prevented participation in some activities.

Early in 1948, aged 13, I contracted what my GP diagnosed as Polio. This happened soon after starting high school at Whangarei. The actual details are a little vague. I don't recollect how long I was kept home and once I returned to school, in view of my pre-existing condition, I wasn't greatly concerned by the fact that muscles in the hip region had been affected as claimed by my GP.

I just carried on, completed school and qualified as a Dental Surgeon in 1960. After a year working in the Christchurch Hospital Dental Dept I went to the UK for my OE. Decided to stay, ran a successful practice, married and in 1985 returned home with my wife and teenage son.

Over the past 10-15 years I have been aware of increasing general weakness. It was my habit most days to start the day with 20 lengths freestyle swimming at the local swimming pool. I had to stop swimming overarm once I could no longer clear the water to complete the left arm stroke recovery. Some 8-9 years ago I started using a walking stick and about 6-7 years ago two sticks.

My balance has never been great but there has been dramatic deterioration over the past 2-3 years. I still cope - just - with two sticks within the house but have recently started using a wheelchair whenever I venture out.

Until recently I have accepted my childhood GP's Polio diagnosis and accepted that Post-Polio Syndrome was responsible for the developing weakness in my arms and legs and also feeling the cold more than usual since we are told that weakness can develop in muscle groups seemingly not affected by the original attack.

There have been sensory changes in my arms. E.g. bilateral tingling/numbness in index fingers and thumbs, and a burning/freezing sensation in the dorsal aspect of the left forearm.

A specialist physician concluded that there was cervical myelopathy, most likely from degenerative disc lesions. It is not my intention to explain the pathology. Put in simple terms it means that the spinal cord was being strangled by the bone forming the spinal canal in the neck.

This was confirmed by MRl and I was referred to a neurosurgeon who did laminectomies at C4, C5 and C6 as well as foraminotomies at C5/C6 about 18 months ago. Sounds impressive doesn't it but essentially this is surgery to relieve the damage being done to the spinal chord in the neck by the bone forming the spinal canal and the nerves to both arms and so prevent further deterioration.

I imagine that in most polio cases there will be little doubt as to the initial diagnosis. In my case I am left to wonder. Perhaps without that 1948 episode and the possibility that I was experiencing muscle weakness due to PPS, I might have sought help much earlier. The surgeon expressed regret that I hadn't presented for surgery years earlier since the damage done is permanent.

I offer this as a warning that PPS is not the only possible cause of increasing muscle weakness in hitherto seemingly non-affected muscle groups and illustrates the fact that just because a dog's got fleas doesn't mean it won't get ticks.

N W Dempster

3. Joyce Oswin

I contracted polio at an early age and was paralysed right down the left side, my mouth screwed up, unable to walk.

I was rushed to Wellington Public Hospital, my parents were put into quarantine and they were told that the children were "dying like flies" and the last remaining thing they could do for me was to inject the serum from some child who had just had the disease. This they did to me, I let out a piercing scream and lapsed into a coma for four days during which time I was fed through the bowel. All this was told to me by my late Mother.

I recovered with many visits to hospital where they gave me pretty marvellous treatment, hot baths, massage and taught me to walk again, thankfully without "irons." That was the 1923 Epidemic. I was not allowed to play sport until I was 14 but I made up for that by playing badminton till I was 70. But I met a lady who suggested I should join your society (which I did some years ago) and now at 84 years of age I have definitely developed "symptoms" down the left side again.

The doctors in Christchurch whom I have seen have all been too young to know about Polio (or Infantile Paralysis as we knew it then) and when I offered to donate my serum in return for it having saved my life, the doctor at Auckland's National Women's Hospital said "We don't believe in that treatment any more. " And yet they said it saved my life!

But at my last visit to my Specialist I told him my leg was getting worse and I find it hard to walk far some days and he replied: "That's your Post Polio Syndrome causing that.". At last after all these years. Mind you, I also have diabetes that plays havoc with my feet and legs and and I sometimes wonder just where PPS starts and Diabetes takes over!! However I feel that PPS is at last being acknowledged and if at my ripe old age I can be of any assistance to the cause, please let me know.

Joyce Oswin

“Look how far we’ve come” - 50 years of polio protection

Whatever Happened to Polio?

Paralytic Poliomyelitis (Polio) was the scourge of summer-times from the 1930's until the 1960's when huge epidemics occurred every few years. Public Health Officials regularly forced the closure of schools, cinemas and public swimming pools up and down the country in an effort to stop the march of this dreaded disease. Finally, Dr Jonas Salk's ground-breaking research in 1955 developed an effective vaccine. Dr Salk never patented his polio vaccine, but distributed the formula freely so the whole world could benefit.

New Zealand Introduced the Salk vaccine in April 1956 and started the long road to protectIng all our children and ultimately eradicating polio from our shores. Mass campaigns in 1961 and 1962, and ongoing immunisation using the Sabin Oral Polio vaccine probably eliminated poliovirus from circulating in this country.

One of the most successful public health actions culminated in New Zealand being declared Polio Free In 2000. Fifty years on, Polio Immunisation is still offered free to all our children. Today, groups like the World Health Organisation, UNICEF and Rotary have joined resources in an effort to eliminate polio from the last pockets around the world.

Recent International Resurgence

World-wide efforts in eradication suffered a major set back in 2002. At a time when polio was confined to only 4 countries, a province in Nigeria stopped immunising following false claims that the vaccine caused Infertility and spread HIV. After 12 short months outbreaks occurred and spread to neighbouring countries.

Now 18 previously polio-free countries have large outbreaks again. Indonesia has had 264 cases to October this year and has launched mass vaccination campaigns to stop the spread and eradicate the virus for a second time in its history.

What is Polio Disease?

Polio is caused by a gastrointestinal virus which causes fever, vomiting and muscle stiffness and can affect the nerves and cause permanent crippling. Polio can paralyse the breathing and swallowing muscles, leading to death.

About 5% of people hospitalised from polio die from it, and about half of those who survive suffer permanent paralysis.

Protection from Polio - The Vaccine Today

Immunisation for polio Is given either as one injection in combination with diphtheria, tetanus and whooping cough or on Its own. It Is included In the regular childhood immunisations given at 6 weeks, 3 months, 5 months and 4 years of age.

The vaccine NZ uses changed In 2002 from the oral Polio vaccine (OPV) to the Inactivated Polio vaccine (lPV). The main advantage of IPV over OPV Is-that it is never associated with paralytic illness. That Is, In countries using IPV, there are no vaccine-associated cases of Polio. The side effects from the IPV Polio vaccine are mild such as reaction at injection site, occasional mild fever and sleepiness or crying but no serious adverse events have been reported.

IPV is very effective and most people will remain immune for life after completing the course of injections. Once Polio has been completely eradicated from the world no one will need the vaccine any more, but until then New Zealanders are still at risk from "imported" cases of Polio and need to protected by Immunisation.

New Zealand memories Post Polio Syndrome and Polio Survivors

There are many people in our communities who survived polio as children and went on to lead full and vital lives only to now find a return of the progressive paralysis they had once beaten. Edith Morris is one.

"Today where are all those thousands of New Zealanders who had polio? We are no longer children or young adults but we continue to live with the after-effects of having had polio. Again we need medical attention as we age. Again we put on braces and use the crutches we threw away in our prime. Again we are asking that the 50th anniversary of one of the greatest vaccines developed is remembered by a modern generation. Polio has almost gone from the national psyche of most people in New Zealand, but still a remnant of us survive to tell the stories of our valuable and meaningful lives today. "

Edith Morris, 2005

Alan was a 17 year old rugby player when he got polio

"I was in hospital when Salk came out with his vaccine. And I look back at that and think well had it been six or eight months I think I might have had the vaccine available to me which may have prevented ...But that is what ifs and maybes - but I would certainly recommend and advise people to be vaccinated because the limitations that polio can bring you can be varied and in my case it wasn't quite as bad as others who have been totally incapacitated ...".

Mrs S

"Yes it stole my life. I think it's one of the most isolating - the results of severe disability, not just Polio, is very isolating. You just can't do things that other people do. As far as accessing and mobility, I can't get into any of my family's homes. I would love to have another go with a bit more level playing field"

Survivors

A unique group of people
We polios are
Survivors of a virus that fell Indiscriminately and far
Some lost the muscles
That help breathe in air
F or them always needed is extra special care Others it took muscles
Both big, strong and small
And left very little movement at all
Many had snatched
Muscles here and there
Some from both legs
So they need a wheel chair

It weakened backs, thumbs, knees and toes But life went on as every one of us knows And we look back from our more aged place And remember the problems we had to face Some more fortunate survived very well
Others struggled through moments of hell But 'made it' we have so we are able to share So future generations wont have to bear Our polio
Port folio.

Carol McKenzie 2005

PP magazine story

Author, sometimes historian, and polio survivor, Paul Campbell, is researching a book on the 1948 polio epidemic ‘in particular’ and is seeking help from society members over the next few months.

Now ‘growing old disgracefully in the Northland hamlet paradise , Paparoa,’ Paul spent four years in and out of Silverstream Hospital in Wellington from 1948 learning to walk after lower body paralysis.

He threw away his calipers, braces and ‘assorted evolutionary ironmongery’ in 1962 after a bone-graft stablisation of his ankle, and went on to become a journalist, reporter, foreign correspondent and editor, in newspapers, wire services, magazines, radio and television, in a dozen countries, including some 25 years in Australia, Europe and the Far East. His career included a long stint in the early days of Radio Hauraki.

“Enter PPS, and I started getting a bit slow for ambulance-chasing,’ he told us.

“Managed to break my crook leg a couple of times, with the second ending up with calipers ‘on the inside’ – with half a space shuttle of metal holding the bones together. So I decided to slow down and that’s when I started in the book business.”

Paul has written several family histories including the titles Grandad’s Room and Footprints, and has edited a number of others.

“Now I’d like to get closer to home. There are some remarkable stories out there concerning people of my generation who had polio, embarked on great careers, and now have had to slow down just a bit. I’d like to tell my story, and theirs, but not as a litany of ‘what happened to me in hospital’ but as a story about getting on with life without dwelling on polio.

“Obviously, polio and PPS a part of that story, but I have always been of that school described by Lauro S. Halstead M.D. in Managing Post-Polio, who says ‘virtually every polio survivor’ he met had a denial of disability … tending even to avoid other polio survivors and people with disabilities.’

“I’d like to tell the story of polio from an insiders point of view, of course, and who knows where this will lead.

“My mother always told how she came to see me in Hawera Hospital and found me standing in my cot, at age two, screaming blue murder, and just as blue with cold. She wrapped me in her coat and took me home. Fortunately my family was able to have me admitted to Silverstream and the Kenny treatment.

“I’d love to hear from any other Silverstream patients, and any details anyone my have on Sister Dryden, who I think studied under Kenny.

“I think my little journey into the past may well uncover some pretty horrific attitudes and, probably, some pretty horrific official incompetence in handling the polio outbreak. So be it.

“I’d like to be able to tell the polio story from my point of view ‘like it was’ but go on to celebrate another side of the spectrum. There are many people I can mention who have risen further above their disability than I ever will – I’ll mention the late Jeremy Dwyer, teacher, politician, administrator, for one. There are many more of his ilk, and I’d love to hear their stories.

“If anyone wishes to share this journey with me, I offer full acknowledgement in any publication which may follow.

“There’s even the possibility that the story may evolve to centre on a composite central character. Who knows, as it’s early days yet. But if anyone would like to have an input, I can be contacted at paulcam@clear.net.nz.

(And it would be really something to hear from the little girl I remember as ‘Margaret’ who I sent crashing down a slope and into a Silverstream hedge in her pram, as I was demonstrating my new found locomotion in calipers back in 1950 or thereabouts.”)

A word about “Your Wheelchair”

From Mary Fieldsend, 6 Mitchell St, Waipukurau

In 1987 I travelled to America, with the group, led by Phillipa Morrison, namely to attend the Post Polio Conference at St Louis, in Missouri - after which we went on a wonderful tour.

Prior to going I was told "You will need a wheelchair" and a very good Betstone chair was provided through "Enable". A physiotherapist was horrified - "don't get too fond of that wheelchair" she warned - she probably thought people in wheelchairs, who could walk (with much effort) on crutches, might get lazy!

She need not of worried. Even though I travelled many wonderful miles, attended functions etc, on that tour, it wasn't until 1997 that I would be seen, in my home district, in a wheelchair. How silly I was - all those times "I didn't go out" concerned that the chairs might be too low for me, it would be too far for me to walk, and the times I did go, when a buffet meal was on, and I ate nothing, or refused a drink, because I couldn't manage on my crutches. I would urge anyone with poor mobility, to get a wheelchair, and use it.

This year, we are getting older, and so are my friends, I decided to ask for a new wheelchair, one of the light weight ones, easier for my carer/family members to lift in and out of the car. I was delighted to return home and find a "Karma" chair on the porch. But it wasn't that great, mainly because the small wheel in the front, were round, and bumped along on the middle rim,( a real bone shaker ride). I only push myself around the house, not outside.

It was difficult to push the new chair over even a carpet tread, and the small lip on to the porch, was impossible. My carer took me down the street, and it was just so difficult. Also, the push bars were slightly abrasive, and just pushing the chair around the house, my hands were blistered. I phoned the Occupational Therapist (OT), who had not the slightest idea what I was talking about, "no one else had complained!"

To her credit, she tried the chair herself, she could not get on to the porch, and then found it easy to drive in and out in my Betstone, on which the small front wheels are flat. She asked me "do you have soft hands?" After 50 years on sticks/crutches, my hands are quite rough! The OT was amazed nobody has ever mentioned the round wheel problem! But they would not know, would they?

After all the hassle of getting a wheelchair, who would complain?

The modern brochures show a "back joint" which enables the backrest to be folded down half way. This is not available in NZ. Why not? When loading a wheelchair into the boot or hatchback, you would not need to tip the chair, or in most cases have to fit it in by lying the chair flat. Also in a hatchback, the rear view would not be obstructed. I know "pop-off wheels" enable the chair to be stored in a smaller space, which is suitable for travelling some distance. However pop off wheels have oily axle pins, and if you are going out to the theatre or dinner, when everyone is dressed in their good clothes, (and it could be raining) the disabled person may choose not to go. With the fold down back, a chair lift to lift the chair into the car, could be used in a smaller vehicle.

The purpose of this memo is to CAMPAIGN FOR THE WHEELCHAIRS TO HAVE FLAT OR FAT, SMALL WHEELS (the round ones seem to be the norm on most makes now) and TO HAVE A BACKREST JOINT TO FOLD THE BACK DOWN. There are too many wheelchair users who push themselves, getting repetitive strain injury (RSI) and too many carers/family members dubious about taking us out for fear of back injury, or spoiling clothes, and other safety issues.

When a friend of mine, after a stroke, provided herself with a wheelchair, she told me "she was going to write to the Council, the footpaths were dreadful": then "she wouldn't go to town anymore, it was too difficult getting the chair, up the small lip into the shops, and over the paving stones". Her chair has these round front wheels.

This lady is now in a rest home, and tells me ''the staff pull her backwards in her chair".

Once at Auckland Airport in my wheelchair, the flight attendant said to me ''this is such an easy chair to push." I said "this is an old chair, aren't they all like this?" He, whilst inviting a co-worker, to push my chair, said, "certainly not, some of them are dreadful". I used to run into a lady, who pushed her husband round town, in a wheelchair, with small wheels. She asked me if I pushed myself in the wheelchair and when I said "No, not outside."

She said, "why haven't we got a chair with large (push) wheels, it's such a devil to push!" Her husband is now deceased, and she said to me recently, "Every time I see you I think of "Sid" (not real name), and that b... wheelchair." No doubt their chair also had small front round wheels. Recently I was at a local restaurant, and noted an elderly couple - he was pulling his wife backwards - I noted the chair did not have push wheels, and small front round wheels.

When I had both my old and new chair here, I got every able person to try both chairs including the OT, the technician from "Mobilities" who came to replace the small front wheels with "fat pump up wheels" and replace the "push bars" with plastic coated ones. What a lovely chair I now have, only I'd still like a fold down backrest! Everyone agreed, "those small round wheels were dreadful and hard (or almost impossible) to push over small bump".

Why I'm writing this is because I cannot believe, manufacturers, funding providers, and assessors, seem to be completely unaware of these problems referred to above. I'd like them all to try taking themselves, pushing someone up town, in a wheelchair, or putting a wheelchair in and out of a vehicle, and experience the problems. This would prove to them how injury could result. Also, to assist carers, and to promote rehabilitation into the community, could the criteria for being supplied with a wheelchair (manual or electric) be lessened, for people with temporary or permanent disability?

Once you are over the stigma of "being seen in a wheelchair" the benefits of sunlight, and being out and about, like everyone else, are magic. Using a wheelchair does not mean ''you have given up". I asked the OT if she would be taking up "the problems" but her reply was "It was better to come from the disabled person," and after some months, this is it, but I was unsure of whom to approach - I hope you will take note and action on these matters, or pass this on to those who can effect these improvements in the lives of disabled people.

Car Parking

Karen Butterworth writes:

Hi friends, I attach for your information a letter I became incensed enough to write to the Wellington City Council about their (mostly) inaccessible central city area.

Dear Mesdames/Sirs

I have a disability which reduces my mobility, and have just made another frustrating visit to your city. Whilst there I parked in the Michael Fowler car park, which no longer has the disabled car park I expected to find, but which luckily had a vacancy. I walked into Civic Square with the aid of my walking stick, and picked up your 'Accessible Wellington' leaflet, thus discovering several other (mostly concealed) car parks I could have used. I could not have used the seven parks in the James Smith car park, however, as they are too far from the Public Library, which I wished to visit.

They would not be too far if you provided a ground floor entrance to the Library from Civic Square. As it stands, to reach the Library's entrance, I either have to walk right round the building to the front, or walk up a ramp, through a tearoom and over to a lift at the far side, then back from the far side to the turnstiles. This extra walking is sufficient to make the James Smith disabled parks impracticable for me. Only the provision of seats in the Library makes it possible even from other, nearer car parks.

I congratulate you on the production of this informative leaflet, which in theory means I will be able to plan my parking in advance of my approximately two-monthly trips to Wellington. In practice, the map reveals many more difficulties than solutions. By definition, as a mobility parking permit holder, I cannot walk more than 200m without disabling fatigue, which in my case worsens my condition (late effects of polio). Late in the day, I cannot walk even that far.

You may be under the impression that providing a disabled parking place every 200 metres would solve my problems. But 200 metres means a return walk of 100 m is the most I can manage without finding seating on the way, which your map also shows to be thinly spread. If I have to walk around a shop to find what I want, and then stand waiting for my turn at the counter, the distance I can walk becomes 50m or less each way. Most of the walking disabled, including (inter alia) stroke survivors, those with progressive neurological conditions, those with broken limbs, and wheelchair users with weak arms, are in the same position as I am, or worse. They comprise, in the Wellington region, probably tens of thousands of people.

The map shows me that neither I, nor any other disabled parking permit holders, can shop or do business in: most of Willis St, the Terrace, Victoria St, Molesworth St, Courtenay Place, Kent Terrace, Cambridge Terrace, and Cuba St (including the Cuba and Manners Malls), to name only the major inaccessible streets. Lambton Quay and Featherston Street look better provided for on the map: but I have only once, in 20 years of visits to Wellington, found a vacant disabled park in their vicinity within business hours. This is because the number of parks provided is pitifully few in relation to the need for them.

Only the immediate vicinity of Civic Square and a few important buildings like Te Papa are adequately supplied with parking for the disabled. If any of you doubt this, I urge you to find a vacant disabled parking space, tie a 5 kg weight to each ankle, then try to do your normal business in downtown Wellington. I am aware that I can use non-disabled parks, but I have many times driven around and failed to find a vacant one close enough to where I want to do business. On those occasions I often go back to Otaki with my planned business postponed until my next visit. The situation has improved somewhat now that Wellington parking costs a minimum of $4, thus deterring many able-bodied drivers, but is still totally impossible at weekends.

I consider people with disabilities should not have to pay that minimum $4 charge, as their use of cars in the city is not optional, as it is for most able-bodied people. It will not become optional until there is a comprehensive network of accessible public transport throughout the city. When you plan for this, please also remember that the walk from Wellington station platforms through the foot tunnel to the bus station is too far for many. Meanwhile, a parking charge of no more than $2 per hour should apply to disabled parking permit holders.

Theoretically I could use a bus in some of the inaccessible streets I have listed. But I have had to cease using Wellington buses because the drivers did not wait until I was seated before driving off from a stop, nor did they wait long enough after they had stopped for me to get to my feet and down the steps. This meant I had to walk down the aisle while they were accelerating or decelerating, and was frequently thrown against the metalwork of the buses' structures and incurred bad bruises. I therefore ceased using the buses before I broke any bones. If you could assure me that drivers have been made aware of these problems, and now invariably wait until a walking stick or crutches user is seated, I would happily resume using your buses. I know there are some kneeling buses, but I know nothing of their frequency or routes. I had hoped to find such information in the 'Accessible Wellington' pamphlet.

I am also curious to know whether the drivers of these buses actually wait for disabled people to get to and from their seats or wheelchair spaces before starting their bus. I know many others must have drawn these problems to your attention, and look forward to hearing from you of your detailed plans to remedy the situation in the near future. I trust you do have such plans, as Wellington businesses must surely want the business disabled people can bring them.

Those who have spent money on making their businesses' entrances and upper floors accessible and widening their aisles, and have ceased placing sandwich boards outside their premises, must be especially frustrated by your Council's continuing failure to make city parking and transport fully accessible to disabled people.

Yours sincerely

Karen P Butterworth

WCC reply to my letter of 23 November

The WCC sent a detailed reply to my letter of 23rd November, signed by the mayor, Kerry Prendergast, the Main points being as follows:

She was very aware of my frustrations, and Council had devised a Mobility Parking Policy in June 2005. She attached a copy, and said it could also be accessed from their website, www.wellington.govt.nz/plans/policies/mobility/index.html.

The document starts by expressing ideals, such as "inclusion and participation [of people with disabilities] in employment, social, cultural and political life and access to services and resources."

It acknowledges that "The incidence of limited mobility is thought to include 1800 of the general population."

The document then sets out minimum dimensions for Mobility Parking places, and says the signage should say that the parking time allowed is double that for non-disabled parks, and cite penalties applying to ineligible drivers, against whom it promises "more proactive" enforcement. (It does neither at present).

It further says that " ... it is intended to increase the number of mobility car parks in Wellington CBD to 60 ... over the next three years. This would represent 2% of the CBD car parking," and after mentioning encouraging increased use of public transport, says "If there is a decrease in the number of standard car parks there should not be a corresponding decrease in the number of mobility parks because public transport is often not an option for people with limited mobility." I welcome this recognition, but hope more will be done soon to make public transport more of an option!

It concludes with specifics about making payment points more accessible, and listing the time extensions allowed to mobility card holders. The mayor's letter made the following further points:

I. The Council is currently revising its "Accessible Wellington" map, and the mayor has "asked officers to make sure they take note of your comments. It is very clear we need to be more descriptive with our parking locations." Details follow about the location of the present CBD parks, and the distribution of 16 new CBD parks, to come into use in February. (Which should now be available).

2. Concerning the locations I mentioned as being without adequate parks, she mentions parts of Willis Street and says they are "working with Total Mobility to consider the best way to combine safe taxi drop-offs with busy bus lanes."

3. She enclosed a brochure detailing a scheme they operate, "where we offer free mobility scooter use within the CBD, along the waterfront and at our Botanic Gardens." (It should be noted that when I went into the Council's Information Centre last November and asked for information on disabled access, they did not offer me this brochure.)

4. The letter says, "We will take your comments on board and expand the accessible bus route information on our map to include route description and frequency of service. We also hope to have an interactive Accessible Wellington map on our website very soon, and ... make sure to include this information on it."

I am pleased the Council is getting its A into G, and gratified that my comments have made a difference. I'd like to encourage other members to be similarly pro-active wherever they see deficiencies in mobility provisions.

Beware Cathay Pacific

This year for the first time after contracting polio 50 years ago, I need oxygen in-flight. Of course, I expect to pay for this extra facility, but I have been staggered at the different rates airlines will charge me.

I am flying return from London to New Zealand, and oxygen for 12 hours' flying time is costing £300 from CATHAY PACIFIC, £150 from QANTAS and £100 from BA: in total an extra £650 for the trip.

My family booked this 2006 trip months ago using pooled airmiles so it's too late to change carriers and Cathay Pacific refuse to lower their quote. I don't think I have any recourse but to pay, so I want to discourage other readers, and anyone else whom they care to tell, from using Cathay Pacific.

Dawn Inkster, Cambridge, UK

Medical Matters

1: Dr Richard Bruno writes:

Last week's Minnesota polio cases are the canaries in the mineshaft.

American's have forgotten about polio since the vaccine was developed in 1955.

The CDC reports that only 90% of US toddlers under 3 years old are vaccinated against polio, with vaccination lowest in poor cities. Only 80% of New Orleans's toddlers were vaccinated. Since the poliovirus in Minnesota is from the Sabin vaccine, no longer used in the US, it was imported into the country. This is especially frightening since polio has broken free of the international vaccination effort.

Polio has spread from Nigeria, through Yemen and into Indonesia, with more than 1,000 new cases reported this year. The danger of ignoring polio has been recognized by the US Congress, which will proclaim 2006 a "National Year of Polio Education." New Jersey is about to educate all health professionals about polio vaccination and Post-Polio Sequelae.

An avian flu epidemic is a clear, but not yet present, danger.

The Minnesota outbreak makes a polio epidemic both a clear and present danger. What happens if a polio-infected child lands in a densely populated city like New York, where 23,000 toddlers are unvaccinated?

Every child must be vaccinated because America's next polio epidemic may be just a plane ride away.

Dr. Richard L. Bruno
Director
The Post-Polio Institute and International Centre for Post-Polio Education and Research Englewood Hospital and Medical Center Englewood,
New Jersey U.S.A. 07631
POSTPOLIOINFO@AOL.COM

2. Medications - use with care

This presentation is not meant to cause undue alarm but is intended to raise awareness of the problems that often arise when survivors of childhood illnesses such as polio and other people with disabilities are given many of today's so called advanced medications. I am no medical expert but I do have an inquiring mind (in other words, I'm a sticky beak) and have always wanted to know why, and how, about all sorts of things, particularly if they effect me. I have also had more than my share of health problems over the years and as a result have spent a lot of time in hospital. I never accepted the refusal of nursing staff to let me read my hospital notes when they were placed near my bed ready for a visit from the team of doctors.

Consequently I was always getting reprimanded for looking at the notes about my body. You will realise from this that I use the public health system. This does have one big advantage in that any adverse reaction to anaesthetics and other medications can be picked up much easier if they are recorded in the one file. I often get dirty looks from staff in the Launceston General Hospital when they ask me about my reactions to medications etc. and I answer "Have a look at my file", That's one of the reasons for keeping these files and no one can be expected to remember the names of all medications that have caused them problems, particularly as names of these change from time to time.

I contracted polio at the age of 6 in 1952 and I have always reacted badly to anaesthetics and it wasn't until I got involved in the formation of the Post Polio Network-Tasmania Inc. 1998 and later taking over the role of Honorary Secretary that I realised, from reading some of the endless supply of information available, that the most likely reason for this, was simply, that I had had polio.

From listening to other members of our Network describe the problems they had experienced with a variety of medications, I started seeking more information about the effects of medications on people who are not quite the perfect pea in the pod and the results of my inquiries have made me aware that we have a much bigger problem than the medical profession realises and one that the pharmaceutical industry generally refuses to acknowledge.

The biggest problem that polio survivors face is the fact. that there are very few, if any, doctors still practising medicine that were involved in the treatment of polio victims prior to the availability of the polio vaccines in 1956 which effectively brought an end to new cases of this paralysing illness where mass immunisations occurred.

This means of course that there is no knowledge amongst the current generation of doctors on how we may react to many commonly accepted medical practices including the use of medications. Initially I was only concerned about polio survivors, but I have since discovered that people who have had other illnesses such as rheumatic fever can also suffer these adverse reactions in very much the same way.

This makes me wonder if it might be in fact the high fever associated with these illnesses that caused the damage to our bodies that results in an adverse reaction to medications, particularly anaesthetics. If so, are people who, prior to immunisation being available for measles, mumps etc., caught these diseases and as a consequence suffered a high fever, also at risk of adverse reactions from anaesthetics and other medications? .

I was shocked when I was informed that until quite recently, the testing of most medications was carried out only on the male members of the U.S. armed forces. How stupid for anyone to think that just because these medications did not cause adverse reactions on these fit, athletic young men, that they were perfectly safe for the rest of the population to use.

Is it any wonder that many women have been experiencing heart problems with some arthritis medications for example. We must remember that as people who have suffered from polio or other childhood illnesses and people with disabilities, our body systems don't work as efficiently as those of the so called 'normal' population. Because many of us are forced to live a more sedentary life style, our circulatory system doesn't work the same, our fat to muscle ratio will most likely be quite different and many of us will have suffered from significant neurological damage. All these things and more will effect the way our bodies react to medications.

In answer to my questions on this subject, Dr. Mary Westbrook, PhD. herself a polio survivor and member of the Post-Polio Network (NSW) Inc. made the following comments. "As we age our ability to metabolise and eliminate most medications from our bodies decreases, so the same dose will produce a higher drug level in the body of an older person, creating the potential for toxic drug levels. People who are ageing and have a disability are more at risk of adverse drug reactions - than able-bodied people due to physiological differences ego people with neuromuscular disorders such as polio tend to have an increased fat-to-Iean muscle mass ratio and this can alter the distribution of some medications in their bodies. Some medications are lipophilic (bind to fat) so they will have a larger volume of distribution in such a disabled person and will take longer to clear out of the body. So the ageing process plus the effects of polio (which of course vary from person to person) can affect our reactions to drugs. Some polio survivors report fewer side effects when taking a lower dose of some drugs {though talk to your doctor about this)".

I had informed Mary of the case of one of our members who had been in an iron lung when she had polio due to paralysis of her upper torso. When recently admitted to hospital after a fall, she was given a muscle relaxant / tranquiliser to calm her down when she was simply trying to tell the staff that she could not breathe without a respirator when she was lying down. The result was one patient whose heart stopped beating.

She was resuscitated only to have the same treatment repeated on two more occasions before they thought to thoroughly check her medical records and find out the treatment they had given her was totally inappropriate. Fortunately this lady has now had a pacemaker fitted, has ceased taking most of the medications she had been prescribed and is enjoying the best health she has had for years. She is however terrified at the thought of having to go to hospital again. Being visually impaired as well as elderly and living at home with her husband, she was on respite care in a nursing home when her fall occurred and was sent to hospital by ambulance resulting in her husband not being there to ensure that no inappropriate treatment occurred.

On this case Mary's comments were: "The woman you mentioned with an affected upper torso would be particularly vulnerable to muscle relaxants affecting her weakened respiratory muscles. Unfortunately ageism, sexism and disabilism result in patients such as this woman not being listened to. Unfortunately I don't think proper extended research into the effects of drugs on people with disabilities is likely to happen. As you say people with illnesses are usually excluded from trials. Until recently women were often not included in trials. So most of the studies on drugs for people with heart problems were done on men...now we are finding that these drugs do not act in the same way in women".

I also asked Mary for advice on how we could avoid being amongst the 20,000 or so people who died each year in Australia as a result of mistakes made in hospitals including mistakes involving medication. Her reply continued "The Australian Health Departments and the medical profession are extremely concerned about people dying from hospital mistakes including wrong medication. NSW Health introduced a Safety Improvement Program in 2002. So far 24 groups of health practitioners have undergone the 2 day training program that will enable them to supervise a process called Root Cause Analysis that will attempt to identify the flaws in the system that allowed the mistakes to occur and to introduce changes that will prevent reoccurrence.

I know about this because I have been employed part-time to be part of a team at the University of NSW assessing the effectiveness of the whole program for NSW Health. I gather that the Commonwealth Health Department is planning to spend considerably to improve safety...so that hospitals won't be such dangerous places to go to. Unfortunately nursing homes, where a lot of these problems probably occur, do not receive great attention". I have also expressed my concern regarding the above matters to Senator Guy Barnett who passed it over to newly elected Federal Member for Bass, Michael Ferguson, who passed on my concerns to the Federal Minister for Health and Ageing, the Hon. Tony Abbott.

A reply was received from his Parliamentary Secretary, the Hon. Christopher Pyne which included the following "The Adverse Drug Reactions Advisory Committee (ADRAC) has been set up by the Australian Drug Evaluation Committee with the express purpose of monitoring and reporting on the safety of medicines. I urge you to advise ADRAC of all drug reactions so that it can undertake necessary follow-up to reduce the likelihood of further episodes.

The web site address for ADRAC is http:/www.tga.gov.au/adr/index.htm#adrac In regards to medical professionals prescribing inappropriate medications, in 2000 the Australian Government established the Australian Council for Safety and Quality in Health Care (the Council), which reports to all Australian Health Ministers.

The Council was established to lead improvements in the safety and quality of health care in Australia. The Council recognises that safe patient care is a result of safe systems of care rather than just the responsibility of individuals within the system and aims to develop a culture of safety within the health system through good governance and other systemic changes. There is a strong platform of safety and quality activities already in progress in jurisdictions and strong partnership between professionals and consumers. In October 2001, the Council set up the Medication Safety Task Force (the Taskforce). Improving medication safety involves both the hospital and the community, as strong interfaces between these sectors should give better outcomes for consumers.

Mr. Pyne went on to say that "It is estimated that approximately 400,000 adverse drug events may be managed in general practice each year, out of over 100 million general practice encounters in Australia annually.

It is therefore quite obvious that the problem is recognised by both the Health Departments and the Government and clearly the measures outlined by both Dr. Westbrook and Mr. Pyne are designed to help improve the situation.

But, these measures are a long way from where the problem is actually occurring so what can we, as patients, do in the meantime to protect ourselves?

We must all realise that we have the right to determine what happens to our bodies and question any new medications that our doctors wish to prescribe for us. We know that each medical practitioner is dealing with a lot more patients than they used to, because of a shortage of doctors in many parts of the country.

This means of course that they don't have the time to get to know each patient as well as they used to. We also know that there are a lot more of us around with health problems and disabilities who in previous generations would have died as a result of these health problems and disabilities. Therefore we need to be more assertive about our own health problems and work in partnership with medical professionals.

We need to try and find out which medications may be unsuitable for our conditions. How do we do this?

By taking note of other peoples reactions to particular medications and keeping records of these is one way. It is important though to be realistic and rational when talking to our doctors. They are only human and they are bombarded with masses of information on new medications from pharmaceutical companies trying to sell their products.

Every time I have to go to hospital, I have arguments with the doctors over one of my long term medications which is considered old fashioned and has been linked to heart attacks. It is Theophylline and I am on about twice the normal recommended dose to control my asthma. For some unknown reason I have an abnormally low level of this chemical in my blood and prior to my G.P. experimenting with the dose rate many years ago I had a number of very severe asthma attacks. Because of this, I will not interfere with a proven life saver for me.

I would much rather die quickly from a heart attack than a suffocating death from asthma and I'm not prepared to risk my life trying other medication that may not work as well in my body. I realise it is not easy for a lot of people to be as assertive (stubborn, pig headed, argumentative) as I am, but when it comes to your life and you are concerned about the treatment you are receiving, you have to be. In the case of polio survivors, many of us know far more about the late effects of polio than all but a few doctors who have had the interest to study the problems we face.

This is one of the advantages of the post polio support groups around the world. We can share our experiences and report them through the newsletters we exchange between states and countries. Of course, there is nothing we can do prevent the situation that occurred with our member mentioned earlier. This was a hopefully rare event resulting from human error if you want to put it nicely. I'm inclined to call it a lack of simple common sense, something that seems to be very much lacking in today's society. I honestly don't know how we can protect ourselves in those sort of situations.

Some of the medications people with damaged neuro-muscular systems need to be aware may cause problems are:

All anaesthetics, including epidurals.

There are a multitude of drugs used in anaesthetics nowadays so it is important to keep a record of where you receive these and which ones caused problems for you. My last anaesthetic was at a private hospital and the anaesthetist was able to access my file at the Launceston General Hospital and determine which drugs were the most suitable to use.

Muscle relaxants.

These can cause real problems for those of us damaged neuro-muscular systems. Some polio survivors have reported severe weakness resulting from the eye-drops used in eye examinations, these too are muscle relaxants.

Tranquilisers and anti-depressants.

These can have a devastating effect on polio survivors and should be used with extreme caution until the right one is found for the patient concerned.

Cholesterol lowering drugs.

Some of these are known to cause muscle breakdown and should only be used if absolutely necessary on those of us with muscle damage. People suffering from kidney disease and diabetes may also suffer muscle weakness as a result of using these drugs.

Artificial sweeteners.

These may also cause muscle weakness in some people.

Beta-blockers.

Used to help control blood pressure problems these cause a reduction in magnesium and potassium levels in the body which leads to muscle weakness. This paper was prepared to present at the ACROD 2nd National Conference on Ageing and Disability in Hobart in July, 2005 but due to overwhelming expressions of interest in making presentations, I was not included in those making presentations. I was however invited to prepare a poster for display at the conference highlighting the main points of this paper.

Arthur L. Dobson,
Honorary Secretary, Post Polio Network-Tasmania Inc. 487 Bridgenorth Road, Legana. Tasmania. 7277.

We thank Arthur for permission to reprint his excellent paper.

3. Energy conservation and work simplification:

Griffith Rehabilitation Hospital, Occupational Therapy Department have created an excellent booklet titled Energy conservation and work simplification: How to have the energy to do the things in life you have to and want to do! We reprint it for the benefit of our members.

Energy Conservation

Energy conservation is "using energy efficiently to achieve the tasks you need to do so you still have the energy to do the things you want to do." It is about making the most of the energy you have.

Work Simplification

Work simplification is the main principle of energy conservation. It involves completing a task in the most effective and efficient way, so that it takes the shortest time possible and uses the least amount of energy.

Work simplification requires thinking through and analysing how you go about everyday activities. It involves modifying and adapting each task as necessary.

Principles of Energy Conservation

There are several principles relating to energy conservation, which are described below:

• Planning ahead
• Time management
• Limit the amount of work
• Correct body mechanics
• Using efficient methods
• Organise storage space
• Sitting when working
• Incorporating rest breaks
• Using equipment and assistive devices
• Stress management

This booklet will examine these principles in detail.

Activity Analysis

Activity analysis is an important part of work simplification. By analysing the activities you do every day, you can eliminate or adapt tasks to reduce the amount of effort required overall. This, in turn, helps to conserve energy.

Certain questions can be used to analyse an activity, such as:

• Could someone else perform the task or part of the task for me?
• Would the desired result still be achieved if some steps within the task were eliminated?
• Are there any assistive devices or equipment that could make the job easier?

Before beginning a task, it is also helpful to ask the following questions:

• Are the rnaterials and equipment I need within easy reach?
• Have I allowed enough time to complete the task?
• Where can I incorporate rest breaks?

Personal Care

Use a long-handled sponge to avoid bending and reaching in the shower. Consider using a bathrobe rather than a towel to dry yourself. Sitting is also recommended.

Combining certain tasks can also save energy. For instance, brushing your teeth whilst in the shower, or cooking and serving a meal in the same container.

Planning Ahead & Time Management

One of the most important aspects of conserving energy is to plan ahead and manage your time wisely. Principles to consider include:

• Balance
  Balance activities throughout the day and distribute harder tasks evenly over the week. It may be helpful to alternate between active, harder tasks and quiet, easier tasks. Consider breaking activities down into smaller, more achievable steps as well.
• Prioritise - doing all necessary jobs first in case you run out of time and energy later. . The right time and place - there may be a particular day or time at which you feel your best, in which case it is better to organise important appointments or social events at these times.

Examples of eliminating or adapting tasks

There are many examples of how everyday tasks can be adapted, or certain steps eliminated, in order to conserve energy.

Below are a few examples of household tasks that can be simplified or eliminated altogether:

• Ironing - Don't worry about ironing pillow cases, sheets, tea towels or underwear. Try to buy clothing that will only require minimal ironing.
• Dishes - Soak dishes in hot, soapy water to eliminate the need to scrub. Dishes can dry themselves on a dish rack.
• Making the bed - Use fitted sheets and a quilt instead of sheets and blankets.
• Shopping - Have groceries delivered to your door (many local supermarkets will home-deliver). Use mail order for other items where possible; the yellow pages or internet are both useful resources.
• Cooking - Try using 'convenience' items, such as bottled simmer sauces or packet mixes. Buy frozen/tinned vegetables that are already chopped up and meat that has already been diced. If you feel that cooking is altogether beyond your abilities, consider ordering a regular supply of frozen meals or using 'meals on wheels'.
• Laundry - Washing smaller amounts of clothing throughout the week can be more manageable than one big load of washing. Instead of hanging clothes on the line, try using a clothes-dryer or a clothes-horse.
• Work with gravity e.g. slide pots across counter space in the kitchen rather than lifting them.
• Use body leverage e.g. carry objects close to your body. Longer handles on brooms/vacuums also require less force and provide more leverage.
• Use good posture and correct work heights -sit to work whenever possible (saves 25% of energy), e.g when ironing, showering, cooking, doing the dishes. Adjust the height of your work area so elbows are bent to 90 degrees. A height adjustable stool can be very useful. Avoid standing for long periods of time.
• Change positions frequently to use different sets of muscles and avoid fatigue.

Storage Options

Organising work spaces appropriately can help to eliminate unnecessary steps in performing household tasks, save time and energy and reduce fatigue. Some examples to think about are as follows:

1. Eliminate clutter - remove unnecessary or infrequently used items.
2. Store items close - ensure that supplies and equipment are stored close to the work area where your will be using them most often. One idea is to duplicate sets of inexpensive equipment (eg. sponges, brooms) and place them in the locations where they are likely to be used around the house.
3. Minimise reaching or bending - it takes more energy to reach above shoulder level, so try to locate frequently used items between shoulder and hip level. Pull-out or rotating shelves can . solve some storage problems also.

Body Mechanics - using efficient methods

Correct body mechanics involves using muscles and joints efficiently to reduce stress, pain and fatigue. Some general principles of correct body mechanics are described below:

• Use larger and stronger muscles and joints to push, pull or carry objects e.g. carry shopping bags over your forearms; close drawers or open doors using your hips rather than your arms.
• Avoid stretching, bending, reaching or twisting e.g. use long-handled objects, such as a long-handled dustpan and broom.

Using Equipment & Assistive Devices

The right equipment has the potential to simplify an activity and reduce the energy required to perform it. Make sure any equipment used is appropriate for the task and is kept in good condition (eg. keep knives sharpened).

Lightweight equipment/utensils or powered equipment can help to conserve energy and reduce joint stress and pain. Some. examples of assistive equipment and aids are:

• Dishwasher
• Microwave oven
• Tap turner 
• Garbage disposal
• Electric knife 
• Food processor/blender
• Utensils with enlarged grips
• Electric can opener; jar opener
• Self-defrosting refrigerator"
• Traymobile or laundry trolley (to carry a lot of items in one trip)
• Pull-cart for shopping rather than carry bag
• Music stand to hold books
• Phone holder or speaker phone

Stress management

Stress, worry and nervous tension can all use up large amounts of energy, so it is important to take control of these feelings as part of an energy conservation plan. Learning simple stress management techniques can help you to feel more in control of feelings such as frustration,. irritation or anxiety.

These techniques may be as simple as removing yourself from the situation causing stress to take time to think and relax. Using work simplification techniques in themselves can help to decrease the amount of stress experienced, by helping you to restructure and gain a balance in your life.

Conclusion

All the examples and ideas discussed in this booklet are generalised guidelines only. For further information on any of the energy conservation principles in this booklet, please ask your occupational therapist.

They can provide you with information" on where to purchase assistive aids/equipment or on how to adapt personal and household tasks to help you manage more effectively and independently at home.

Disclaimer:

The purpose of this publication Is for information only. You rely on this publication at your own risk. Griffith Rehabilitation Hospital disclaims all liability for any claims, losses, damages, costs and expenses suffered or incurred as a result of reliance on this publication. As information in this publication is subject to review, please contact your doctor, physiotherapist or occupational therapist before using this publication.

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" Philip G. Ruiz The Abilities Foundation of Nova Scotia.$3.A very readable down-to earth handbook with neat illustrations.

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 8901,
Ph / Fax 03 434 6405 email Ray1.wilson@xtra.co.nz
Secretary and Treasurer: J B Munro, 120 Factory Road, Mosgiel 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 Aged Committee of the Lotteries Grants Board and the J.R. McKenzie Trust, to whom we express our thanks.