I'd like to start with this picture.  A few months ago my 4 year-old grand-daughter Sarah came to visit me dressed as a fairy, complete with magic wand.

She said "Gran, I'm going to wave my magic wand and you'll be all better.  Abracadabra .........." and few more special magic words.

I gave a little jump to help the magic, landed straight-legged and said "I'm better!"

She looked and said "No. That's not good enough.  I'll have to do it again."

So she waved her magic wand again and this time when I jumped I put my hand down and released the lock on my caliper so that I had a bent knee.

She looked again and said "It's a bit better but I guess you'll always be like that."

"I'm one of the lucky ones really."  Why do all polio survivors say this?  We find this comment comes out inevitably at some point in our conversation with polio people.  I guess, this is a product of the era when we had polio, and in some ways it is assisting us today as we come to terms with the late effects of polio.  What sort of people are we that we see our problems in this way.

UNFINISHED BUSINESS
Polio survivors have tended not to congregate in groups, not to talk to each other.  Often long periods of time were spent in hospital with acute polio and later follow-up.  For a lot of us, a portion of our childhood was lost; separated from our families; living with strangers; hospital regimes and treatments.  Some, I know, were even mistreated in hospital, or at home, (probably parents we see as hard, thought they were doing it for our own good).  Staff and parents were told to encourage us not to give up.  "No pain - no gain" was the philosophy.  We have had to cope with the fact that what happened to us was often a taboo subject in our homes.  To be ignored, not spoken about.  And our parents have also struggled with guilt for having allowed this to happen to us, their children.  We have been encouraged, both in hospital and at home to get on with life as if we were "normal".

Although this effort to minimise our disabilities may have been beneficial in helping us to overcome them, it involves an element of denial that makes it difficult for some of us to admit that we even had polio.  It was seen as a stigma and permeated our attitudes to life, to doctors, to hospitals, to our peers and to our work situations.  For many of us this denial was, and continues to be, reinforced by our families and friends.  This may make it difficult for us to acknowl-edge we now need to seek help for further deterioration.  For some this may lead to depression and even mental instability.  It is not easy for us, and we may have some emotional unfinished business to deal with, before we can accept the need for further help.

We may experience difficulties with anaesthetics and surgery.  New younger, hospital staff will often have no experience in dealing with polio disability.  We may need to educate people about the peculiarities of our disabilities - all polio survivors are different.  As we get older our needs will change.  Our muscle tone and muscle bulk can reduce; altering the fit of appliances, giving rub in different areas, even causing more muscle wastage.  Loss of muscle strength may mean we require lighter footwear and calipers.

DEGREES of POLIO
We can divide polio survivors into 3 main groups.

Group 1 - the Largest Group. - is comprised of people who recovered well, despite sometimes extensive initial impairment.  People, who to look at, appear to have no residual effects of polio; and who have lived their lives normally, often forgetting that they once had polio.
They may however be starting to run into problems again now.  This group seems to be the one having the most problems with fatigue, lack of endurance and pain.  They are often not taken seriously because there is little evidence of any previous disability, and, in fact, often prefer to ignore the symptoms themselves  Yet these problems can have quite an effect on the quality of a person's life.  The services of equipment providers are generally not the answer.  What we need is a diagnosis.  In our Clinic we've been hugged by patients for finally putting a name to what ails them.  This gives them permission to lie down during the day; to have a rest when tired; to not feel so guilty when they can't keep up with their peers, and the expectations of spouses and families. The problems are real.

Other solutions may simply be a practical approach to the problem.  One person seen in our clinic was complaining of pain in his leg every morning when he woke up though it was fine when he went to bed.  He slept with his polio leg uppermost as he and his wife didn't sleep facing each other.  We worked out that lack of muscle bulk in his polio leg meant that this position put strain on his hip joint while he slept.  He'd already tried a pillow between his legs but it always slipped out.   After listening carefully and probing with the right questions, we suggested that he changed places with his wife in bed so that he slept facing the other direction.  It worked.  No more pain!
 

Group 2, are people who have often pushed hard to succeed in a world which doesn't want to acknowledge disability. In trying to keep up with peers, they have physically overused and often abused their bodies.  And now may suffer from wear and tear of joints, weakening tendons and ligaments, maybe increasing weakness in muscles and in some perhaps, even further visible muscle atrophy.  Group 2 people are very reluctant to take what they see as a backward step in returning to supports such as shoe raises, calipers, walking sticks, crutches and even the use of a wheelchair for getting around longer distances, like shopping.

Acknowledging we even need more help is a big hurdle.  It may take time, coaxing, understanding - for us to come to terms with what the experts see as a straightforward requirement.  And we often find that what we are offered is not much different from what we used in the earliest years.  Medicine has progressed out of sight since we had polio but where is the new technology for our needs.  We sometimes feel that all progress with polio stopped with vaccination and we, the survivors, have been totally forgotten. Brenda, our clinic physio, used the same caliper for 25 years and it was very comfortable.  Then one day, her old caliper suffered metal fatigue and snapped just as she stepped out in front of a bus.  Down in a heap she went, wondering if the bus was going to run over her.  She broke her ankle in the fall but even that wasn't the worst.  Nobody's ever been able to make her another caliper to fit quite as well as the old one.  One will rub a sore spot here, another there.  She has to alternate calipers in order to keep from rubbing continually in one spot.

The quality of the modern product is not good either.  Brenda has often had locks fall apart on her, often in most embarrassing circumstances.  She tells how she got up to walk down the aisle in church and found herself getting more and more lurchy until she  collapsed in someone else's seat as her caliper disintegrated, a kind soul walking behind her gathered up the pieces as they fell off.

Brenda warns that we need to be vigilant and not trust that the right thing will necessarily be done  She tells how some shoes are fine, yet others she feels awkward in, despite seeming fine when she first tried them on in the shop.  One day, being very industrious, she decided to clean and polish ALL her shoes.  It wasn't until she saw them all lined up together on the kitchen table that she realised - the position of the ferrule in the heel of nearly every shoe was slightly different.  No wonder she had problems walking in some!

Another time, Brenda had to go with a short 5 foot high woman to the Orthotic Clinic.  She'd been asked to go with her because the woman was perplexed.  She was wearing a straight-legged child's caliper with provision for growth despite being now in her 40's! A new one was being made and she had hoped to finally have one that would bend at the knee.  But the doctor was ordering another unbending one.  Not only that, her GP had sent her off for another opinion at a different hospital where she saw the same orthop-aedic surgeon again but here he was booking her in for a knee fusion so that she wouldn't need a caliper!  We know that doctors are very busy, rushing from one patient to the next.  They can't be expected to remember everything.  But for this woman - nobody was listening to her.  All she wanted was a caliper that would bend at the knee when she sat down!

Group 3 - This is the minority group, made up of people who were left with severe disability from their encounter with polio.
They may walk with crutches and caliper but with reasonable difficulty; be wheelchair-bound; or require some sort of respiratory assistance.  These people remain dependent on others to a major degree and life is a constant struggle.  They face the restrictions left by polio many times a day.

Group 3, in fact appears to have less deterioration than the other groups, probably because they have had little left to use and now, little left to lose.  They may need more equipment, like electric wheelchairs and respirators, more full-time care.

Psychologically this group seem to be better prepared for what is ahead and more willing to accept help.  This help does need to be skilled though.

For example, we had a lady in a wheelchair come into our clinic who had been sent by her GP to a number of specialists to try to find the source of her abdominal pain.  When we examined the seating of her wheelchair, we found the canvas seat had stretched so that she was sitting in a bit of a U-shape.  We advised her to get a new firm canvas seat and with this the abdominal pain disappeared.  We've had other wheelchair users complain of knee pain which was eventually traced back to a new, slight alteration in the footrest height that had been made.

Another classic example was a lady with a shortened arm who complained of shoulder pain, saying she felt as if her shoulder was coming out of its socket.  It was.  Standard wheel-chairs are built for people with arms the same length and nobody had thought to raise the armrest on her short side.  Over time it was literally "falling out of the joint" for lack of support.  We need to be more aware and really think for ourselves.