Polio News

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

June 2006

In this issue

Editorial
President's report
Correspondence
Branch reports
Medical matters
1. Fatigue
2. The hidden causes of fatigue
3. Dr Richard Bruno
Bits and pieces
Review
Literature available
Directory

Editorial

Greetings to all readers. This issue brings news of the AGM and mini-conference in Wellington in September. This will be the usual happy occasion with good fellowship and thought-provoking presentations. We look forward to seeing a wide representation of branches present.

Polio immunisation remains a major issue. For Twenty years we have keenly followed the Rotary International "Polio Plus" campaign for the global eradication of polio. It has been a highly successful effort in public health and has seen world-wide annual cases of polio drop from millions to a few thousand. However the target dates for complete eradication, firstly of 2000 and then 2005, have passed but polio is still with us. Enormous progress has been made but a disturbing feature of the campaign is now emerging. A degree of pessimism about the reality of complete eradication appears to be developing. This is discussed fully in Mary Westbrook's Polio Particles piece later in this issue.

2006 is the 50th anniversary of the release of the Salk vaccine and it is being celebrated by several branches with displays and other publicity. New Zealand is not immune from the possibility of further outbreaks of polio and anything that our Society can do to improve the level of polio immunisation will be worth the effort.

We recently came across two papers on PPS fatigue, which is probably the most disabling feature of PPS. These two papers are not recent but they contain much good advice and we feel they are well worth bringing to your attention.

I don't think I will make it to conference this year. I am sure it will be a worthwhile occasion. I wish all a happy and successful weekend.

Best wishes Denis Hogan (Editor).

AGM and conference

Friday and Saturday September 8th and 9th 2006.

BRENTWOOD HOTEL 16 Shaw Street Kilbirnie WELLINGTON

Members, and delegates from local Support Groups, are hereby invited to attend the 17th annual meeting of the Post Polio Support Society of New Zealand Inc.

This year there will be no registration fee payable but for planning and catering purposes, completion of the registration form is essential and must be returned to the Secretary at P.O. Box 249, Oamaru 8915, by 31st July 2006.

Each attendee is responsible for their travel and accommodation costs. We urge local societies to support the attendance of members by applying now to local funding groups such as COGS, Trusts and Gaming Machine outlets for funds to assist with local members travel and accommodation costs.

We have reserved accessible and standard single or twin rooms at the Brentwood Hotel for the Friday night September 8th. The cost for a room is approx. $125 (half if shared) plus optional breakfast and is each individual's responsibility. Please put on the registration form your accommodation needs.

Friday

The programme for Friday night is as follows:

5.30 pm Happy Hour and Get-together

6.15 pm Annual General Meeting

7.00 pm Dinner for all. attendees

Saturday

The programme for Saturday will start from 9 am and conclude at 3.15pm

Speakers on Saturday morning will focus on medical and surgical matters including cholesterol and its significance and the controversy around statin drugs. Professor Geoff Horne, an expert on hip and knee, will be speaking on joint replacement with particular embers with a panel made up of people appropriate to the concerns raised.

President's report

Hello to all,

Trust you are all well and happy as winter approaches. I'm not really sure where the days and months go, but we are already nearly half way through 2006.

My get well wishes go to those who have been on the end of ill-health and condolences to those who have faced this trauma with the loss of family or friends. It is always a trying and sad time having been down that track ourselves with a quick trip to Feilding when Iris - my wife - lost her last living sister, and thus being the older generation brings to all the unknown future we face.

Since my last writing Iris & I have travelled to Oz Land - Tasmania where we spent 23 days R & R interspersed with some hours of maintenance chores for the daughter and her home needs.

We had a trip to Launceston - Legana to attend 'Tas-Polio Management Meeting' with warm welcome from Arthur Dobson and his band of helpers. We did arrange this before we left NZ and their door is always open to visitors. Their members face the same travel problems as areas like Taranaki do - few and far between, plus difficulty with travel.

In arranging their Annual Meeting they move to quite remote areas to enable those most isolated to attempt to attend.

I was a little stunned to learn that polio Survivors are able to get financial help to travel from Tasmania to Melbourne to see Dr Stephen de Graaff with not too much difficulty. Quite a few have been able to make the trip across Bass Strait.

I read a report in the Tas News magazine about a new DVD / Video that was filmed last year and released for public use. It features five survivors from the Melbourne region planning a concerted effort to seek help from the most appropriate medical professional, and the story behind the outcome. Look for the preview that Denis has done and his comments in Polio News.

I was able to meet with Mary-ann Lethof on my arrival in Melbourne and bring back 3 copies of each format for circulation within NZ. We deemed it wise to obtain both Video & DVD's because the new format will not be readily available in all circumstances. In the credits New Zealand even got a mention from Mary-ann.

Now back home and tonight we have a tele-conference for the Board and high on that agenda is the September AGM / Day Seminar in Wellington. If you are planning to be there look for information in the next Polio News.

This morning May 2nd I received a phone call from a Polio Survivor from Timaru whose G.P. suggested she try to contact our society as she had had polio at age ten in 1943. This is a complete turn-a-round for the medics to refer their patient to us for help. Perhaps at last some Internet Information is starting to be understood.

Polio Web Site - is in the process of being set-up and from my only trial viewing seems easy to access. We will give you all the details as soon as it is open for use.

Meantime take care and keep safe, and best wishes to all

Ray W.
President.

Correspondence:

1. Complaint regarding home care provision.

Mrs Stewart's letter highlights a difficult and very important issue. We feel it should be available to all members. In a recent Otago branch newsletter, Diane Jackson reported on an unsatisfactory situation with a family conference or placement. There are likely to be many other examples and we would very much like members to write to us about their experiences - good or bad. (Ed)

“Yesterday, after some 6 years home care support, I felt compelled to refuse further assistance despite my need, for reasons as set out below**.

Surely it is not sufficient for government to enact laws to keep the elderly and disabled in their homes (at great saving over institutional care) if it does not ensure this service is carried out with respect and dignity for both givers and receivers? The present situation amounts to organisational and institutional abuse of the elderly/disabled and needs URGENT attention.

Funding shortfalls and continual reorganisation has:

a) Effectively reduced the competency and acceptable level of the home care given/received.

b) Meant that personal care provision takes precedence over home assistance. (see below later)

I ASK whether the providers are sufficiently funded? And IF yes:

Are they profiteering from funding by not paying enough in wages to care workers and/or to their administration at base level?

Does the funding given to them stipulate base wage/mileage rates? (If not why not?). *Is the funding properly supervised and the providers held to account?

Does the institutional handling (from Ministry, to Health Board, to Hospital Administration; to Provider) result in poor continuity so that in the end individual client needs get 'lost' in the system?

It seems to me there is a vast discrepancy between "intent" and "provision".

My situation and experience: I have some paralysis and post-polio syndrome, also osteoarthritis. I have to 'pace' ~ all my energies. Over the years my 'good' side has deteriorated from compensatory over-use. To maintain function I've had several operations with another due shortly. My husband, 73yrs, does many extra things for me; he too has osteoarthritis; also the beginning of macular degeneration. We receive 2hrs assistance weekly.

In 5-6 years I've experienced some 20 -25 workers. This is like being constantly invaded! Of course, some were competent and caring but soon left for more gainful employment.

Those of us with long-term intractable disability receiving home support are marginalised because our care arrangements get constantly disrupted despite our trying to understand and be flexible. School holidays are a nightmare

Yesterday, not for the first time, a person due to come did not arrive and I was not notified. An hour later I telephoned the office. Although knowing about it, the co-ordinator had unsuccessfully searched for a replacement and neglected to call me; she apologised. The providers at local level are overwhelmed by the inability to attract competent workers. For me it was a proverbial 'last straw'!

My other experiences of 'care': Many of today's younger people are not trained in even basic housework, i.e. some cannot use even a duster properly. Over the years I have had two people with dirty shoes who when asked to remove them had feet almost as dirty; one who filched small items; another who was 'born again' and wanted to convert me; those who patronise, obviously doing 'good work' and call me 'lovey' or 'dear'; one who smoked heavily outside but brought all the smoke smell with her, coughed often and disgustingly; others were lazy ... one sat on the floor to work then her daughter popped in later to vacuum; one brought a sick child and left them in the car (they were sent home); others talk incessantly of their own troubles; and one lovely but intellectually handicapped lass who asked for direction every ten minutes; others were bossy; I could go on!

I need someone who will: clean the toilet brush dispenser; do behind the doors; remove articles from surfaces and dust before vacuuming; vacuum under the lounge chair cushions sometimes; wipe the window ledges as well as the sills occasionally; do the interior door sills; dust the pictures sometimes; wipe the skirting boards; when mopping the wet areas wipe out the comers and around the appliance feet with a cloth where the mop doesn't fit or go; not do half one room then forget the rest; not dust one side of a piece of furniture only, and to sometimes do the legs of same; wipe the range-hood and microwave; wipe finger marks from doors; polish some furniture sometimes; etc I don't ask for everything to be done every week but with poor continuity of help it is impossible to get a routine established anyway. (more below)

Once these needs WERE supplied ... now these are supposedly listened to at frequent detailed assessments, but I'm told many cannot be incorporated in the contracted plan as being "spring cleaning" or against OSH rules.

I remind the authorities:

Our homes are often the major asset for later long-term institutional care should it be required.

We need to sell them to best advantage and thus be able to choose an aged care facility within a compatible environment.

As we still pay taxes through our superannuation etc, we deserve more consideration.

We do have a life other than waiting for 'help'. We are not all housebound or aged.

Gratitude is a given, but the poor service delivery is a further stress on top of our disabilities.

This now reduced contract-plan between client and provider plus the agreement made for a fixed time and day for the care is great on paper or as a verbal assurance... but getting these adhered too is a vastly different matter. In reality providers only consider the guidelines as set from "above" or as suits them.

Those with physical disability need more than "basic level care to ensure independence". This patronising statement (as cited to me by an administrator) is a prime example of institutional/organisational abusive thinking

Further, those of us "unable" (for whatever reason) also need oven, light shades, or higher fittings cleaned regularly are now expected to personally employ other cleaners who charge $20-$25 an hour (incl. mileage & GST) for one worker. How can this be paid for on a regular basis by those on only the basic benefits or superannuation, or even as my own case, by those of us with a small extra income, but the total of which is still well under the Community Services Card cut-off point, yet does not qualify for WINZ assistance?

SUGGESTION: would it not be easier and more cost effective for the long term (assessed) clients to personally employ a cleaner for the home care and have WINZ pay this as is done with gardening lawn mowing?

FINALLY:

I ask that the system be properly funded, that someone, somewhere, ensures accountability and continuity.

That they really listen to our needs.

That they pauses to consider what it is like to be constantly inviting unknown people into ones home and privacy, to feel constantly on edge about it. To feel obliged to be endlessly "grateful" and thus not question the providers and so just take what is handed out to us.

Yours sincerely,

2. Upcoming events - Linda Wheeler Donahue.

We will be happy to contribute to Linda's column.

Does your post-polio support group have an upcoming conference, symposium or special meeting? If so, please send me the who, what, where, when, and why and I will add it to the Upcoming Events column in our spring issue of The Polio Messenger.

I am also interested in major cross-disability conferences such as ADA forums, etc.

We prefer events scheduled to take place June 2006 and beyond as our newsletter will not be distributed until late April.

Thank you from snowy, stormy Connecticut beneath 2 feet of fresh powder!

Branch reports

Northland

Our Northland members have been out and about lately with two enjoyable meetings in the past few weeks. 6 of us travelled north to Kerikeri in March to meet with some of our far north members.

We had a very worthwhile meeting sharing our current post polio problems and gaining helpful advice from others who shared their " coping" hints. e.g. the value of a walking stick or a walker for tired legs and balance, the benefits of getting a Disability parking permit, and wheelchair assistance at Airports or in large stores.

Our April meeting was another shared lunch at our member Bas's home. 12 attended with a guest speaker Fran Crawford, who practises "Ortho Bionomy" - a gentle non invasive form of body therapy which is highly effective in working with chronic stress, injuries, and pains or problems associated with postural and structural imbalances.

Fran demonstrated the technique on several members who reportedly felt benefits.

Sadly we report on the loss of another of our valued members. Margaret Spiers joined us as a member on our first meeting and was a loyal supporter of our local Post Polio group. She contracted polio at the age of 5 years and both legs were severely paralysed. This didn't stop her from leading an active life enjoying lawn bowls and many other activities. Margaret was in her 80th year. We shall miss her.

Our next meeting will be at Cobb and Co Whangarei for lunch on Wednesday 14th June. All welcome. Ruth Inglis.

Bay of Plenty

Beautiful though it is we have had way too much rain lately and are ready for some sun. Despite the weather we had a lovely outing to a cafe up in the Kaimai hills. We met for lunch and enjoyed the large choice of food available. We had two members who are not usually available for outings who were able to come this time and that made the day even better. This time the game we played was a spelling game, (won by Elaine) and I have to say(as a young Field Officer) that the "older generation" is not always as good at spelling as they make out!. However, it was fun listening to everyone as they put their minds to it.

One of our committee members became a grandad for the first time, and that's always lovely news. Congratulations to Ace and Lorna.

We are visiting GP practices around Tauranga to leave information about post polio for both the GP's and the patients. I hope this will reach people who may need our support and also alert some of the younger Dr's who are not so familiar with PPS, as we are here. I was also able to leave information at our social worker's networking meeting.

That's it from the Western Bay of Plenty for now.

Gill Raine, Field Officer

Taranaki

"In March Shirley and husband Tony,travelled to Wellington to attend the official lunch of a book "Amazing Dog Stories" which features a story involving Shirley. The book, written by Michael Romanos, is published by New Plymouth firm, Zenith Publishing and contains many amazing stories of dog adventures.

Shirley's story recounts how she was summoned by friend Elaine Whiting's miniature poodle Andre. Shirley followed the agitated poodle to Elaine's home and crawled into the house (there is no ramp) to find Elaine in a diabetic coma. Shirley then crawled back to her scooter and home to ring paramedics and ambulance-Elaine did not have a phone connected at the time. Assistance arrived in time and all was well thanks to Andre's urgent concern for his mistress and Shirley's brave efforts.

Most of you know that Shirley has had a major battle with ACC. Well Shirley has won her review and has set a precedent in that ACC can now no longer use polio as an excuse not to accept a claim. Shirley's battle has been hard on her family and on her.

Now the first battle is over we move on to another stage. The amputation has slowed Shirley down a little.

Christchurch

As predicted in the March newsletter, our committee have produced an interesting and varied program of events and meetings for the next few months.

A speaker from WINZ recently reminded us of the help available from this source and detailed recent changes that may be relevant. Next up will be a representative from the rescue helicopter organization to talk about their work.

The booking list for a bus trip through historic parts of North Canterbury was rapidly filled and we hope that the weather will continue fine for that outing in May. More than thirty members attended a lunch outing at Rossendale restaurant recently and the photo shows a sample of the delicious desserts available. George.

Otago

Otago had a low-key meeting in April. After the preliminaries, JB rushed off to a vital rugby match and the rest of us settled down to compile dates and places, Beginning a mini survey of when and where we each contracted polio. We only recorded the town, the year, the age and any guess as to the actual place were the polio struck.

Polio was scattered around Otago but we did discover some hot spots. Beaches and long drops featured several times. We intend to follow up with missing members as well and found it most interesting listening to others' tales.

On another front, the Otago Regional Council is discussing its transport strategy and J.B.is presenting a submission at the hearing. This is principally about buses and their availability and routes. Mobility cards are also an ongoing issue.

Disability car parks and disability taxi drop off areas are issues being addressed with the D.C.C. by Patsy Wakefield (Assembly of People with Disabilities)

So, gradually an awareness of our needs is becoming known by our two councils and, hopefully, the necessary changes will take place.

Diane.

Medical matters

1. Fatigue

We have tried unsuccessfully to contact the publishers of these two articles. They are quite old now and have been reprinted in some polio newsletters. They make interesting reading and we have taken the liberty of republishing them without specific permission. In the co-operative world of the polio survivor we think this will be acceptable.

Fatigue

By Linda Wobeskaya from the Greater Boston Post Polio Association.

Dear Linda,

I can't seem to do as much as I used to be able to do. I used to walk about a mile every day and now I get very tired after only about half a mile. I usually push myself to finish my walk anyway because I know exercise is important. What exercises can I do to get stronger?

Getting Tired in Tewksbury

Dear Getting Tired,

This question falls into the category of frequently asked questions! Many polio survivors report their daily battles with tired muscles and decreasing ability to do the things they want. The most successful approach to solving a problem is to first understand its cause. Today's column will explain the causes of muscle fatigue. The next newsletter column will present a variety of strategies for coping with muscle fatigue.

The cause of muscle fatigue is related to your recovery from polio. The poliovirus damaged or destroyed the nerve cells (motor neurons) in your spinal cord, which transmit the messages from your brain to your muscles. If you want to wiggle your big toe, your brain sends the message down your spinal cord to motor neurons, which then conduct the message down your leg to stimulate the muscles that wiggle your big toe.

Each motor neuron is connected to specific muscle cells in a particular muscle. The poliovirus damaged or destroyed these motor neurons in your spinal cord, which cut off communication between your brain and your muscles. The specific muscle cells that depended on that particular motor neuron were orphaned, or lost their communication line to the brain. The motor neurons that were spared during the polio attack sprouted extra branches and reconnected as many of these orphaned muscle cells as possible. This is one of the ways you recovered your strength.

However, the result was one motor neuron now controlled as many as five times more muscle cells than it was originally designed for. For example, if that particular motor neuron originally controlled 200 muscle cells, it might now control over 1000 muscle cells. This means it ‘sprouted' over 800 extra branches.

As the years go by, the motor neurons become less and less able to support all these extra branches. As a result, these branches begin to slowly die off. Here is an analogy. Imagine that you added 3-4 new rooms to your home during the years when heating oil was plentiful and inexpensive. Then there was a crisis in the Middle East and fuel prices skyrocketed. What would you do?

You would close the doors to those new rooms. When the motor neurons "close the doors" to these extra branches, the branches die off. The muscle cells again lose their communication line with the brain. When the brain sends a message down to that muscle, fewer muscle cells are able to respond, because fewer muscle cells actually received the message. What you experience is new muscle weakness.

There is another important point to consider. Your muscles can not differentiate between activities you consider "exercise" and regular daily activities. The quadriceps muscle in your thigh works when you use the stairs in your home and when you exercise it at the health club. Your motor neurons and muscle cells don't know the difference. So everything you do during the day is experienced as exercise by your muscles!

Let's take a moment now to reconsider your situation. You used to walk for a mile and now you feel quite tired after half a mile. Your mind says, "A half-mile should not make me feel tired. It's not that far." The truth is, it doesn't matter whether you think a half-mile, or even a half block is very far. Your muscles are telling you that it is more than they can do. When you push yourself to walk the mile, you are ignoring this message.

If you ignore the message, you risk serious and perhaps permanent damage. When you continue to exercise when your muscles feel tired, you are taxing your already overworked motor neurons. You may be helping those extra branches to die off. Is this something you really want to do?

When you first had polio, exercise was the means to increased strength and function. So it makes sense to think that exercise will help now. However, your original weakness was caused by the polio infection. The cause of your current problem is described above. Different causes require different treatments. So you might guess my answer to your question regarding which exercises you need to add to your day. More exercise will not help you to get stronger. III fact, more exercise could cause you to lose strength permanently. "But," you say, "I have to do something!"

I most heartily agree. There are many things you can do to feel stronger and to feel better overall.

First, in my experience the key to the success of any coping strategy is commitment to change. Doing more, doing less: both require a change in one's lifestyle and neither happens consistently without a commitment to this change. Commitment requires a belief in the potential positive outcome resulting from change. What are your beliefs about healing yourself and helping yourself to feel stronger?

Let's look at the question in your letter:

"What exercises can I do to get stronger?" This tells me that, in your mind, perhaps the cure for weakness is more activity, more exercise. This belief makes a lot of sense, based on your initial experience with polio. When you first had polio, exercise was the cure. You experienced increased strength and function after lots of exercise and hard work. Unfortunately, exercise is not the cure for your current problem because the cause is different. As discussed in the last issue, your original weakness was caused by the polio infection. Now, the cause of your weakness is too much activity: more activity than your overworked motor neurons can handle. More exercise is unlikely to help you and is very likely to make you worse.

This fact may be in direct opposition to your beliefs. It is extremely important to recognize that if you believe exercise is the best cure, it will be very difficult for you to try anything else.

So the first strategy for coping with muscle fatigue is to become aware of your beliefs about healing yourself. Are your beliefs consistent with the facts? The clients I have known who were most successful in achieving healthier and happier lives slowly came to accept the facts about post polio syndrome and changed their lives accordingly. It took a lot of hard work and it was a great achievement.

And they were unable to start making successful changes until they changed their beliefs about what they needed to do to become healthier. This does not mean their old belief system was bad. It simply no longer served their needs.

The second strategy for coping with muscle fatigue is to notice when you are falling prey to what I call the "All or None" thinking process. When you hear the words "pacing" or "energy conservation", do you immediately think, "No way. I'll have to stop doing everything I like"? Does not doing everything mean not doing anything to you? This belief will also keep you from making helpful changes in your life.

Pacing and conserving energy means accepting the fact that you have a finite amount of energy and making healthy choices about how you want to use that energy. The truth is, making several small changes can often add up to feeling a lot better. For example, you know you get very tired after walking for a half mile. Don't ignore your symptoms and walk the full mile. That's doing it all. Don't skip your walk entirely.

That's doing nothing. Try walking a distance that does not tire you, such as 1/4 mile. Think of it as choosing to compromise. You could push yourself through the pain and fatigue, walk the full mile and risk the future health of your muscles. You are choosing not to. It's also important to acknowledge that it's a difficult choice. That's where the hard work comes in. Accepting undesired changes in your body is hard! But, as a polio survivor, you are no stranger to hard work. This is just a different kind of work.

The third strategy is to consider all options available to help you save energy. It's like clipping coupons for the grocery store. Thirty cents here and forty-five cents there can add up to significant savings. Where can you save energy? Try reversing your thinking. Do you choose to use the stairs as often as possible? Do you park in the furthest parking space, just to get that extra exercise? Each time you think of some way to get some extra exercise, do the opposite. Each time you use an elevator instead of stairs, you have saved that energy to use elsewhere.

Another energy saving strategy is the use of a cane or a brace. Most people I have worked with smile and shake their heads "no" as soon as I say the word "cane." And yet I persist. A cane is one of the best energy saving devices I know. There has been a lot of research that shows that when one's walking pattern involves extra motion in either the trunk or legs, it takes more energy to walk. A device like a cane or brace, which decreases this extra motion, saves energy. Does your body sway from side to side when you walk? Do you have to lift one leg extra high to keep from catching your toes and tripping? Once again, thinking about an energy-saving device involves a choice and a compromise. No one wants to use a cane. Yet using a cane may mean being able to walk farther with less fatigue. A doctor or a physical therapist can tell you if one of these devices could help you to conserve your energy. Then the choice is up to you.

I hope you have found this column helpful. Change of any kind can be very challenging and usually happens slowly, with many stops and starts along the way. I encourage you to acknowledge your courage in taking any small step toward changing your life for the better.

2. The hidden causes of fatigue, Russell Child

Power Up!

Ten Hidden Causes of Fatigue: How to Spot Them How to Stop Them, by Russell Wild

Editor's Note: Fatigue is a very common symptom of post-polio syndrome, and can also be a result of other aspects of PPS such as respiratory insufficiency. This article deals with the more common causes of fatigue in the general population, but still contains many useful tips, which would apply even to polio survivors. The sources of fatigue listed here should be ruled out before concluding that one's fatigue arises from pps.

Do you often feel dragged out, knocked down, pooped, bushed, plumb exhausted? If so, you've got lots of company. Fatigue could well be America's prime complaint. In a recent poll, four in ten adults reported that tiredness often '-interfered with their daily activities.

What's causing such rampant exhaustion? Let's start with what isn't causing it: aging. The medical literature says nothing about age-related fatigue: "With normal aging, not a heck of a lot changes," says Michael Freedman, M.D., a gerontologist at New York University Medical School.

"Healthy people in their 80s and 90s should have pretty much the same energy levels they always had." National surveys, in fact, bear out that parents of youngsters complain of fatigue much more often than do nana and poppy. But if it isn't age, and if you're getting sufficient sleep, what evil forces might be robbing you of your zest? Below, some surprising culprits:

1. Dehydration.

Studies of athletes show conclusively that even minor dehydration can sap performance. Without adequate water, you cease to sweat, your heart pumps less blood to the skin and your core body temperature rises. All of this robs you of energy. You should be sure to get at least eight cups of fluid a day. Don't count alcoholic or caffeinated beverages, both of which can dry you out.

One caution if you raise your intake of fluids: limit how much you drink after sunset. "It's remarkable how many people come into my office complaining of poor sleep, and then tell me they drink several cups of water a night", says Benjamin Natelson, M.D., professor of neuroscience at the University of Medicine and Dentistry of New Jersey Medical School and author of Facing & Fighting Fatigue (Yale University Press, 1998).

"It's hard to get a good night's sleep when you're constantly getting up to go to the bathroom. If I woke up for six or seven minutes four times a night, I'd be a wreck the next day."

2. Low Blood Pressure.

Fatigue is more common in people with low blood pressure, according to a population study published in the British Medical Journal. "If you are frequently tired and often have episodes of lightheadedness, you should get to a doctor" says Hugh Calkins, M.D., a cardiologist at Johns Hopkins School of Medicine. Treatment may require medication such as Florinef or Midodrine, to raise your blood pressure, although sometimes plain salt will work.

3. Disturbed Sleep.

Dopey days may be a result of fitful nights brought on by a sneaky and often undiagnosed condition known as sleep apnea. Many people are unaware that sleep apnea is a frequent cause of daytime tiredness, according to a report in the August 2000 issue of the medical journal Chest.

The condition, in which the tongue flops back during sleep and blocks the airway, temporarily chokes off your breathing dozens or even hundreds of times a night. People who have apnea briefly wake up each time it happens, and their sack time is substantially less rejuvenating. All told, you're looking at "serious daytime fatigue," says the report's author, University of Michigan neurologist Ronald Chervin, M.D.

Apnea afflicts nearly one in four men and one in ten women, and the problem becomes much more common with age. Heavy snoring can signal sleep apnea, though not all snorers are afflicted. To get a firm diagnosis, you may need to check into a sleep laboratory.

4. Low Testosterone.

"Although it's not the first thing we look for, low testosterone can certainly cause fatigue," says Robert Tan, M.D., of the University of Texas Medical School, author of The Andropause Mystery (AMRED Publishing, 2001).

Studies indicate that roughly one in three men over age 65 has low testosterone levels. Yet testosterone levels can be determined with a simple blood test and, if low, corrected rather easily with injections, a gel (applied to the chest or arm) or a patch. The results can be dramatic. "I've had patients in walkers who took testosterone and could walk unaided," says Tan.

5. Thyroid Problems.

An estimated 10 to 20 percent of older adults produce too little thyroid hormone without any obvious symptoms. "Hypothyroidism is a very sly condition, particularly in the older population, because it mimics what many people think of as 'normal' aging," says Tan. Common symptoms include tiredness, possible loss of luster to the skin and hair and an intolerance to cold.

"A little pill known as levothyroxine supplies the body with a synthetic version of thyroid hormone and can often restore energy levels very quickly," adds Tan.

6. Anemia.

A prime symptom of anemia - a condition characterized by insufficient hemoglobin, or red blood cells - is fatigue. One of the more common causes of anemia is low iron, but contrary to popular belief, this rarely has anything to do with diet. When older people lack iron in the blood, it's usually for only one reason-internal bleeding. That's not as horrid as it sounds.

Minor internal bleeding can result from not-so-serious causes such as the liberal use of aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs). It can also be caused by such conditions as diverticular disease, ulcers or hemorrhoids. Anemia, whatever the cause, can be diagnosed with a blood test. Most common problems that lead to blood loss are fixable.

7. Eyestrain.

Is your eyeglass prescription up-to-date? If not, you could be blurring more than your vision. "When your eyes are tired, everything's tired," says Kerry L. Beebe, O.D., an optometrist in Brainerd, Minnesota and spokesperson for the American Optometric Association.

And nothing tires eyes like peering into a computer screen for hours. For those who wear bifocals, the fatigue can be extreme. "Many people will move their head back and raise their chin to get the screen into view of the bottom part of their lenses. This will tire the neck," says Beebe.

The solution: Take frequent breaks from the computer and consider getting glasses with a focal power specific to the distance between you and the screen.

8. Your Medicine.

You already know that some cold pills can make you drowsy, but you may not realize that fatigue is a side effect of many other drugs, both prescription and over-the counter. Common energy robbers include medications for blood pressure

(Procardia, Inderal), depression (Zoloft, Elavil), anxiety (Xanax, Valium), even infection (arrioxicillin and cephalexin). Some non-narcotic pain relievers . Anaprox, Naprosyn, even Aleve) also can zonk you. Sleeping pills are supposed to make you drowsy, of course, but some (Halcion, Restoril) leave you foggy well into the next day.

There are nonsedating alternatives to many medicines, points out Eric J. Mack, Ph.D., R.Ph., assistant professor of pharmaceutics at the Massachusetts College of Pharmacy and Health Sciences. The newer generation of prescription sleeping pills, such as Ambien and Sonata; will help put you to sleep and vanish from your system before the rooster crows.

9. Late-night Indulgences.

Alcohol right before bedtime can make you drowsy, but it will do nothing to promote a good night's sleep. Liquor interferes with rapid eye movement (REM) sleep, which is the refreshing part; "As a rule of thumb, a single glass of beer, wine or spirits, taken at least three hours before bedtime, with food, shouldn't create sleeping havoc. Anything more, or later, than that is ill-advised," says Joyce Walsleben, Ph.D., director of the New York University Sleep Disorder Center and author of A Woman's Guide to Sleep (Crown, 2000). Eating too much too close to bedtime can also interfere with restful sleep.

"I suggest eating dinner between 6 and 7, and then if you're hungry, having a very light snack of sleep producing foods between 9 and 10," Walsleben says.

10. Simple Boredom.

"The more you lie around, the more you lie around," says New York Medical School's Freedman. "When you have nothing to do, you tend to feel like napping." That blah feeling could also signal a mild depression, he adds.

Want to perk up?

Try something different. If the most exciting thing in your life right now is flossing, it may be time to sign up for a bridge course, check out a few art museums, reconnect with old friends, get yourself a Labrador puppy or, if you don't work, consider a paying or volunteer job.

Fatigue, of course, may not be caused only by these insidious energy sappers. It's natural to wonder if persistent exhaustion might be a symptom of something terrible like cancer or heart disease. That's unlikely, according to the experts.

"Serious diseases don't usually begin with fatigue as a first symptom," says Freedman. With cancer, for instance, there will usually be blood in the urine or stool, swelling or pain. With heart disease there will usually be chest pain or shortness of breath upon exertion or waking up wheezing in the middle of the night.

On the other hand, if energy loss hits you out of the blue, that certainly warrants concern. "If you've been well and you suddenly feel fatigued, and it's not associated with something readily apparent like the flu, go see a doctor. You need a workup," says Natelson.

Addressing the hidden energy drains described above will certainly improve your day-to-day vigor. But removing these negatives is only part of the battle. To really rev your motor, simple lifestyle changes like regular exercise, proper nutrition, good sleep and a positive attitude can make an immediate and tangible difference.

So can taking time for spiritual or emotional fulfillment. "We need to give ourselves permission to step back and enjoy the fruits of our labor," says minister Wayne Muller, author of Sabbath: Restoring the Sacred Rhythm of Rest (Bantam, 1999).

"We need to recognize that, no matter how important our contributions, life continues if we stop for a while. Muller suggests that we designate one day a week to be "blissfully useless." You may worship, if so inclined, take long walks in the woods or socialize with friends. But don't make business calls or balance your checkbook. Relax and give your mind and body a chance to refuel.

Russell Wild is a freelance journalist in Allentown, Pennsylvania. On some days he is more energetic than on others.

Reprinted with permission of Modern Maturity and Russell Wild (c)2001. This article first appeared in Modern Maturity.

3. Dr Richard Bruno writes

ST. PAUL, Minn., Oct. 14 - Four cases of polio virus infection have been identified in children living in a small Amish community in central Minnesota. None of the children had been immunized against polio, state health officials here reported.

"The general public is not at risk," said Minnesota Health Commissioner Dianne Mandernach.

The only people at risk for contracting polio, Mandernach said, are those who have not been immunized against polio and who come into direct contact with an infected person.

The infections occurred in three children from one family and in an infant from an unrelated family with whom they had direct contact. The source of the infection may have been a fifth person who recently received an oral form of the vaccine containing live attenuated virus.

The viral strain isolated in the infections appears to be a variant of a strain used in oral vaccines overseas, the health authorities said.

Although the oral vaccine (descended from the one originally developed by Albert Sabin, M.D. in 1961) is more effective at preventing the transmission of polio, the live attenuated virus it contains is still capable of causing infections in about one in 2.4 million people, according to the CDC.

Because the risk of contracting polio in the United States is now extremely low, the use of the oral vaccine in the U.S. was discontinued in 2000, and all vaccination is now done with the injected inactivated virus (originally developed by Jonas Salk, M.D. in 1955).

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 recognised by the US Congress which will proclaim 2006 a “National Year of Polio Education.” The avain flu is a clear but not yet present danger. The minnesota outbreak makes a polio epidemic a clear and a 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.

Bits and pieces:

Items 1 to 4 are reprinted from Mary Westbrook’s ‘Polio Particles’ column in Post Polio Network (NSW) newsletters, with thanks.

1. Polio and Warm Springs made the man.

This Kenneth Brannagh (who gives a great performance of FDR) film is showing on Sky Movies 1. Unfortunately it is only available to those with sky. I have taped it. Ed

Warm Springs made the man

A television film, Warm Springs, recently shown on US TV stars British actor Kenneth Branagh as FOR The Chicago Sun-Times review (29/4/05) wrote: Branagh embodies the president-to-be at the critical turning point of his life [when he contracted polio] ... in a wheelchair, believing his political career is over FDR retreats to Warm Springs.

At first, it's clear he. wants to hide from the world. Then he begins to believe in a cure. But as he takes in the poverty of the region and adapts to his physical limitations, he finds renewed purpose ... 'Warm Springs' portrays an enlightening episode that doesn't figure in many history books. Not only did Roosevelt clean out his trust account to buy Warm Springs, but he died there, in the tiny cottage known as 'the little White House', in the 13th year of his presidency. It's still a rehabilitation center today.

We haven't forgotten Roosevelt or his impact. But it's one thing to know that he guided the nation through the Depression and a world war; it's quite another to watch him make people forget he's a paraplegic. 'Warm Springs' suggests that FDR's physical weakness wasn't just a political setback - it was the source of his strength. Let's hope it shows on Australian TV.

2. Cartoon novelette history of polio

Polio: a virus' struggle, a cartoon story by James Weldon, has the polio virus telling its story at a group therapy session of the Diseases Nearing Eradication Support Group.

The hexagonal virus sits on a chair and has its turn after smallpox ends its tale in tears. 'Okay, ummm ... hi, my name is poliomyelitis, and I'm nearing eradication ... I'm a contagious epidemic enterovirus or at least I was until the vaccine ... ' The 14 page story can be found at www.bioteach.ubc.ca/quarterly/?p=45 .It's a great vehicle for telling children about polio and vaccination.

It's very informative with lots of amusing bits. 'Everything was going well says polio until I infected someone famous. In 1921 I was contracted by Franklin Delano Roosevelt. I was such a fool! I should have known he'd run for office!'

"Leprosy responds 'Polio, you can't blame yourself ... I panicked LA in 1935, and all the time they were trying to contain me the wrong way, isolating the clinical cases and ignoring the asymptomatic carriers. They were treating me like TB'. The emails to Ask Mary indicate that polio is a very popular topic for school projects and this is a good reference.

3. Ageing with polio

'Aging with a disability', a book edited by Bryan Kemp and Laura Mosqueda, has been published by Johns Hopkins University Press, 2004. Although aimed at health practitioners (it is subtitled 'What every clinician needs to know'), people who live with disabilities acquired earlier in life will find it interesting and informative. Of the 16 chapters, four are concerned with specific disabilities.

Dr Jacquelin Perry wrote the chapter on polio. I found the facts about the early course of paralytic polio and its typical recovery pattern interesting, for example, 10% of patients regained normal function within 2-4 weeks, patients attained 93% of their eventual recovery within one year and, on average, affected arm muscles recovered more than did leg muscles.

There are chapters on ageing with spinal cord injury, cerebral palsy and developmental disabilities. The rest of the book covers issues common to all disabilities and polio survivors' experiences are frequently referred to. Chapters include: 'A consumer's perspective on living with a disability: How change in function affects daily life', 'Family members' perspective on aging with a disability', 'Quality of life, coping and depression', 'Family and caregiver issues', 'Maintaining health and function', 'Secondal' conditions', and' Barriers to care: the provider's and the consumer's viewpoints'.

The introduction points out that we are among the first generation of people with early-onset disabilities to live into middle and late life. Consequently we [the authors] know very little about how they might age.

However information ... has been accumulating for the past twenty years [and] what has emerged is a picture of atypical aging; these people frequently undergo substantial and even profound changes in health and functioning in midlife. These changes were neither anticipated or planned for in earlier generations. The usual practice in rehabilitation was to urge people to do all they could and to push a little (or a lot) past normal limits to maximize their abilities. Professionals in rehabilitation paid little attention to the long-term consequences of disability or the issue of aging ...

The first group to notice that aging was not going well was the population with polio. While PPS is unique to polio survivors we share some late effects with other disability groups. People with cerebral palsy develop inordinate rates of orthopedic problems and falls. Those with spinal cord injury develop osteoporosis. The authors remind us that Aging is not the same as being aged. People begin to age long before they begin to notice the changes normally associated with being aged. This means that the best time to influence how you age is when you are young.

Small changes early in life have a major impact on later life.

What are the long-term consequences for joints of continuing to walk despite pain?

How long should a person with a disability plan on working? Dr Mosqueda comments that, Olympic athletes are among the small proportion of people who push their bodies to their highest possible level of functioning.

Perhaps people with disabilities share this characteristic with elite athletes; but instead of pushing their bodies during training in the quest for a gold medal, they must do so every day just to accomplish their daily activities and fulfill their social roles. She says that able-bodied people have physiological reserves that enable them to accommodate much of the decease in capacity which occurs with ageing but people with disabilities have a much reduced buffer zone. Dr Kemp discusses depression and quality of life of people with disabilities.

He says that while depression is more common among the disabled population there is little association between depression and severity of disability. For example, one research study found no difference in the occurrence of depression rates among paraplegics and quadriplegics. Kemp, who has researched polio survivors, found that having social and community activities was strongly linked with feeling happier. The moral is that if fatigue limits the number of activities you can do, choose social activities with friends and have the groceries delivered. If you are on the Internet you can order them online. The book can be purchased from Amazon.com for $US24.95.

4. Polio global case countdown

The WHO reports that between 15th March, 2005 and 14th March, 2006 there were 1,860 cases of paralytic polio worldwide. Polio is now considered to be endemic in only four countries; Nigeria (735 cases), India (63), Pakistan (24) and Afghanistan (11). However many countries considered free of polio reported high numbers of cases due to importation of the virus; Indonesia (303), Somalia (194), Ethiopia (18), Niger (12), Angola (10), Sudan (5), Nepal (4), Mali (3), Chad (2), Eritrea(1) and Bangladesh (1) (www.polioeradication.org).

The total number of cases is higher than the 500 in 2001 As reported in recent newsletters most of the imported cases had their origins in the setback to vaccination which occurred in Nigeria in 2003 when the northern states halted vaccination for a year due to rumours that polio vaccine contained AIDS virus or would sterilise those who took it.

Bangladesh has reported its first polio case since 2000; a nine-year-old girl developed polio in January this year. She had contact with a family who had recently visited the state of Uttar Pradesh in India. Bangladesh conducted extensive vaccination programs from 1995–2004 and is now resuming them. It plans to vaccinate around 18 million children on three nationwide vaccination days. All children in the girl's village have been vaccinated.

An article in the International Herald Tribune (20/3/06) described the final drive to end polio as a plague of doubt and exhaustion. One problem, polio experts warn, is that many poor countries that eliminated polio have now let their vaccination efforts slide, making the immunity covering much of the world extremely fragile.

They compare it to a vast, tinder-dry forest: If even one tree is still burning, a single cinder can drift downwind and start a fire virtually anywhere. The quality of vaccination campaigns is particularly poor in Nigeria where many children are missed. Living conditions in Uttar Pradesh (population 180 million) make the prospect of eliminating polio intimidating.

Living conditions are so dense, public health services so awful, summer heat so sweltering, the open sewers and monsoon floods so commonplace that a more perfect breeding ground can hardly be conjured. There have been over 24 vaccination campaigns there in recent years. In 2004 teams went door to door eight times and eight more times in 2005. While polio numbers are the lowest ever, Uttar Pradesh is the site of most Indian cases.

With great anticipation India and other countries began ... using a 'monovalent' vaccine that focuses only on the most common strain of polio, but gives immunity in fewer doses. The great hope was that monovalent vaccine would be the magic bullet and melt all cases away, but that hasn't happened' said Cochi [Doctor at the Centers for Disease Control, USA]. Dr Donald Henderson, who led the successful war that eliminated smallpox, believes the polio campaign is all but doomed. He suspects the WHO figures on the number of cases are incomplete but even if they are correct problems that are now nearly being ignored in the all-out effort to corral the last few cases will suddenly loom large.

For example, as a precaution, vaccination must be continued for many years after the last case is found, polio experts agree. But in about one in three million doses, the live oral vaccine being used in poor countries can mutate back into a wild-type virus that can infect and paralyze victims ... And each paralysed child means another 200 'silent carriers' spreading the disease.

5. How Polio saved me from jail

By Ted Faithfull

I told the following story, my story, at a Post Polio Meeting in Whangarei and some Members thought it should be published in a newsletter, so here it is.

In the winter, July 1970 to be exact, an ex-deer culler, another Ted, and I went hunting in the Ureweras.

After two days of hunting and no luck we moved and met up with an old possum trapper who invited us to share an old Maori Meeting House with him and thousands of possum skins.

The possum trapper told us he poisoned and trapped 8,000 possums in a winter and it was a waste of time for him to return in under 3 years. He told us we were a week too late as he had upset the deer and they had moved on. The next day we had a look but with no luck. When we arrived back at the Meeting House, our friend, the possum trapper, was cooking tea, and you've guessed it- possum! We said we were moving out.

The old Meeting House was 100 yards north of the Lake and not far from the road.

Loading our gear in to the A40 we heard cars coming on the metal road. They came around the comer, stopped and doors flew open-and we were surrounded. It was the long arm of the Law. They separated us and took my mate 50 yards down the road.

It turned out that George Wilder had escaped again and was in the area. It didn't help that I apparently looked like him and had two scars in the same places he did. When asked if they would look at my licence they said that it was of no value as it could have been stolen along with the car. No photo in those days to prove who you were. The Police were going to take me in.

I was desperate and then I had a brainwave. I ask if George Wilder could run and the reply came back -like a hare. Well, I said, I can't, and showed them my right leg. The three cars and their cargo left without a "sorry" or "bye bye."

Photos: One of myself outside a hut with the Austin (below) and the other of my mate Ted outside the Old Maori Meeting House with possum skins strung along the front. Ted Faithfull, Hikurangi.

6. The Battle Against Polio Continues

Last November in Pakistan more than 29 million children were immunised through a massive mobilization and advocacy programme by the World Health Organization, Rotary International and the Government of Pakistan.

Reported cases of Polio in Pakistan (22) and neighbouring Afghanistan (6) are down by at least 50% from a year ago. In India reported cases of Polio detected in 2005 was down to 25 compared top 68 in 2004 and 79 in 2003.

Most cases were reported in just two states - Uttar Pradesh and Bihar. These two states are crucial, as they hold the key to India finally reaching the zero-polio status by next year. Overall the drop in the infection rate is the result of the monovalent oral polio vaccine and the level of commitment of respective governments and the Global Eradication Initiative Partners.

In early December a pan-Islamic conference in Mecca agreed to provide $US 2.6 million towards the polio eradication effort. The Organization of the Islamic Conference (OIC) Summit also focused on the effort needed to rid the world of polio. Saying that the OIC was painfully aware that the six remaining polio-endemic countries in the world are its members, the statement highlighted the significance of international efforts to eradicate the crippling disease.

The wild poliovirus still circulates in OIC member countries of Afghanistan, Egypt, Niger, Nigeria and Pakistan. Polio-endemic India is not a member of the OIC but boasts a Muslim population of 100 million living in states where the virus can still be found. Another OIC member, Turkey, announced a contribution of $500,000 to the worldwide war against polio.

Source: Rotary Down Under Journal 02/02/06

7. Ministry of Health recognises PPS as a disability for life.

In recent correspondence to the Western bay of Plenty Disability Support Trust, the Deputy Director General of the Disability Services Directorate within the Ministry of Health (and Disability) Geraldine Woods said:

"There should be no automatic devolving of responsibility for the provision of disability support services (DSS) for individuals with life long disabilities when they reach the age of 65 from the Ministry of Health to district health boards (DHBs)".

"The Ministry of Health's definition of disability, which determines whether a person is eligible to be assessed for DSS, accepts that polio, and in many instances PPS, are disabilities for life. In most cases, a person who has had polio as a child and impairment for life will receive DSS funded by the Ministry throughout their life, until they are reassessed as having needs like older persons and need aged residential care. Only at that point will funding responsibility shift to the DHB".

"However, the 2003 decisions accompanying the devolution of responsibility for the funding and planning of disability support service for people over 65 years of age to DHBs mean that some people who had polio as a child, and then have a near full recovery, and no contact with support services for most of their life who then develop PPS after 65 years of age, may find that they become the funding responsibility of their local DHB".

What has been your experience? Please write to Polio News with your comments.

8. QEH newsletter

Greetings

QE Hospital Limited (trading as QE Health) is proud to announce that it is now solely owned by the Queen Elizabeth Hospital Community Trust.

Since June 1993 the company has been owned 50% by a group of private investors. This change in ownership is a significant event in our history as we can now say that we are totally owned by the communities we serve.

The Queen Elizabeth Hospital Community Trust is represented by the following groups:

Rotorua District Council (representing the community)

Arthritis New Zealand

Ngati Whakaue people through Pukeroa Oruawhata Trust

The Queen Elizabeth Hospital Patients and Rehabilitees Association

the Rheumatology service

the Orthopaedic service and

QE Health staff

The change in ownership will allow us to further focus on:

Maintaining and developing QE Health as the Centre of Excellence for the treatment and rehabilitation of Rheumatic and musculoskeletal conditions

Developing QE Health site for health-related services

Continuing to provide Rheumatology and Rehabilitation Services for the communities we serve

Benefiting the community from professionally provided health services

Promoting the development of the QE Health's spa services and Rotorua as a health and spa city.

QE Health continues to provide Government funded services for people with arthritis and related disorders through our contracts with the District Health Board's of Lakes, Bay of Plenty and Tairawhiti. Our regional contracts with these boards support referral to our specialist rheumatology clinics, inpatient/day patient rehabilitation services and allied health assessments (Lakes only).

Please contact us if we can provide any information on eligibility criteria for admission to QE Health. Alternatively, this website contains the referral criteria and the District Health Board Maps can be located on www.moh.govt.nz

We look to the ongoing provision of Rheumatology, Rehabilitation, Orthopaedic Surgical, pain management and spa services to the communities we service so that we can continue to strive to meet our vision of "together enhancing mind, body and spirit".

Yours sincerely

Ben Smit, Chief Executive.

Review

Australian DVD /Video

"Post Polio Syndrome-The Australian Experience A Film about Polio by Polios" DVD/Video.

Produced by The Polio Network, A service of Para quad, Victoria, Australia.

The first video about PPS I can recall was produced by the Post-Polio Awareness and support Society of British Columbia.

This was shown at our conferences in the early 1990s. There have been several other similar ventures which we have purchased and shown at conferences and branch meetings. Among these are videos by the South Australian PPSG, The British Polio Fellowship, and Sonny Roller and Frederick Maynard.

We had, perhaps, reached the stage of overkill and it is many years since there was an addition to the list. Now we have a new, and major, contribution to education about polio and PPS from the Polio Network, Victoria, Australia. This is a significant production and is available in both DVD and video format.

The Board of Management has purchased three copies of each and they will be available for loan to groups to show at their meetings .. Individual members and, particularly, polio groups may well wish to purchase copies at this give-away price.

To some, the information will be old hat but there will be many members who have not seen any of the earlier presentations and in any case a refresher course in the basics of PPS is always a good thing for those who have.

This is a very professional production. The experiences of six polio survivors are welded into nine chapters covering the fundamental aspects of PPS and its management. Interestingly, perhaps inevitably, five of the six presenters are very articulate women. The man is a young Ethiopian refugee who provides an interesting contrast to the five mature women. The fact that he is an immigrant to Australia raises other issues that warrant discussion in the future. As its title clearly states, this film is about the Australian experience of polio but the NZ situation is very similar and the messages in the film are valuable for NZ survivors.

The producers used an interesting technique to obtain the information they wanted. The polio survivors were allocated a medical expert to interview. Their questions to the experts and the replies, with visual illustrations, provide the information needed to build the story. Because the questions were being asked by well-informed survivors I am sure the experts learned a lot about pps from the experiences of the survivors.

Two contributions are worthy of special note. Dr Richard Bruno, of "The Polio Paradox" fame gives his 10 commandments for polio survivors. Bruno is a controversial figure in PPS politics in USA but his "Polio Paradox" has been a hugely influential book. It is good to be able to see and hear him. Then Dr Stephen de Graaff, who was our superb key-note speaker at the 2004 conference, answers questions to camera as an addendum to the DVD version. Much wisdom is contained in these answers and they make the DVD very much the version of choice.

The film is by polios for polios and their doctors and is remarkably good value. The more copies circulating in NZ the better. I hope the BOM and branches will promote its distribution (DJH).

Golfing Instructions

1. Back straight, knees bent, feet shoulder-width apart.
2. Form a loose grip.
3. Keep your head down.
4. Avoid a quick back swing.
5. Stay out of the water.
6. Try not to hit anyone.
7. if you are taking too long let others go ahead.
8. Don't stand directly in front of others
9. Be quiet wile others are preparing to go.
10. Don't take extra strokes.
11. Flush the toilet, wash your hands, go outside and tee off.

Literature Available

1. Handbook on the Late Effects of Polio"- Revised edition. Ed. Frederick Maynard and Joan Headley. Gazette International Networking institute (G1 NI) $25
2. "Managing Post Polio: A Guide To Living Well with Post Polio Syndrome" Ed. Lauro Halstead. National Rehabilitation Hospital, Washington D.C. USA. $25.
3. "Mind Over Muscle. Surviving Polio In New Zealand. Ed. Karen Butterworth. Dunmore Press $25.
4. "A Practical Approach to the late Effects of Polio" Charlotte LeBoeuf. Post Polio Support Group of South Australia $3 (This is an early post polio handbook but is still very good value.)
5. "Helping Polio Survivors Live Successfully with The late Effects of Polio" Post Polio Network (NSW) Inc. $3 - A concise, helpful and very readable handbook.
6. "Polio" Ed. Thomas M. Daniel and Frederick C. Robins. University of Rochester Press. $35 A collection of scholarly essays. One copy left.
7. "Late Effects of Polio - A resource Guide for survivors" by Philip G. Ruiz has been revised and reprinted under the authorship of Professor Joan Walker and Philip Ruiz. This highly recommended booklet is available through Polio News at $10 (Can.)

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.