Molly Thomas
Class of 1998
PART ONE: WHAT IS POST POLIO SYNDROME?
ANCHOR INTRO: To many polio is a disease of
the past, eradicated with the vaccine developed
in 1954. Yet as little as three generations
ago epidemics of the poliomyelitus virus which
attacks the brain and nervous system, left
thousands paralyzed, on respirators or dead.
But as Molly Thomas reports in the first of
a three part series, for polio survivors today
there may be a dark legacy to face.
MOLLY THOMAS INTRO:
Bill and Mary Johnson, who asked that their
names be changed, have traveled from their
Florida home to find an answer - an explanation
for Bill's increasing joint pain and weakness.
Their search has brought them 610 miles to
the Roosevelt Institute in Warm Springs Georgia.
It was once famous as a polio rehabilitation
center, now it helps those with the little
known aftermath - Post Polio syndrome. The
condition Bill suspects he has.
Bill's life has become so limited by pain that
even moving the 12 feet from his bed to the
shower is tiring. The crunch came several
months ago when he fell making that short
journey.
JOHNSON: I got frantic, I said this is ridiculous
because all my years I've taken care of myself
no one has ever helped me, and now I need
someone to walk into the shower with me, no
it’s not me it's not my style, it's no
way of living, it's a horrible way.
SOUND UP : JOHNSON EXAMINED BY DOCTOR GAWNE
AT WARM SPRINGS
Sixty two year old Bill sits on the bed in
the small examination room, grizzled and gaunt,
in obvious pain with every effort to get comfortable
. Mary perches on a chair opposite her husband,
while Dr Anne Gawne reviews his notes.
GAWNE: What are the main problems?
JOHNSON: Number one is my left rotator cuff.
FADE IT DOWN
Bill caught polio when he was eight leaving
him paralyzed in his right leg. He walked
with a leg brace afterwards, and had an active
energetic life as a husband, New York taxi
driver, and occasional visitor to Atlantic
City for a game of dice. But in the last few
years he's become increasingly crippled.
GAWNE: Have you noticed that you're getting
weaker? Are your muscles getting weaker? Which
muscles? Your arms or your legs?
JOHNSON: My arms are getting weaker now. Because
they used to be strong and now they're getting
a little weaker. They're getting tired faster?
GAWNE: New weakness in your arms.
FADE DOWN
His wife Mary is desperate.
MARY JOHNSON: He won't admit to it, but he
can cry at the drop of a hat, this man never
cried, this is true Archie Bunker. That's
why we're here today. Because if we didn't
I have no doubt in my mind that when it got
worse he would take the car and crash it.
Dr Gawne’s diagnosis: Bill Johnson has
the condition Post Polio Syndrome, or PPS.
A National Health survey found 1.6 million
people in the country have been diagnosed
with polio at some time in their lives. Post
polio groups estimate 250,000 of them experience
the aftermath.
Doctor Richard Bruno has a post polio clinic
at Englewood Hospital in New Jersey. He's
treated post polio for the last 14 years.
BRUNO: The symptoms of PPS from the most frequent
to the least frequent are fatigue; muscle
weakness in limbs that were affected by the
polio virus; weakness in the limbs that were
seemingly unaffected by the polio virus; joint
and muscle pain; difficulty swallowing; difficulty
breathing and cold intolerance.
The cause of these symptoms is not the return
of the virus, but the aftermath of damage
it caused to the muscles the first ime. When
the virus attacked it killed sixty percent
of the motor neurons, the nerves that fire
the muscles. The remaining neurons had to
power all the muscles. After a while they
simply collapse from the extra strain.
In other words says Bruno the body is like
a car breaking down.
BRUNO: When polio survivors were born they
had an eight cylinder engine, when they had
paralytic polio they lost four of those cylinders
and as time goes on they try to drive up Pike's
peak at ninety miles an hour with a four cylinder
car, and as that happens the cylinders start
to fail.
When people first recovered from polio, their
younger bodies could manage with less cylinders
and they recovered muscle use. Thirty five
years later the new weakness becomes apparent,
as the remaining neurons reach bedrock levels.
Polio survivors can find themselves unable
to walk, swallow, or even breathe, all the
things controlled by the muscles.
It's been known for over a hundred years that
polio survivors can experience new weaknesses,
but it wasn't until 1984 that post polio was
named. The early 80s was a key time says Bruno
because thirty years before the polio epidemics
hit their peak. In 1952 alone 57 000 people
had the disease, and so fifteen years ago,
like clockwork many of the survivors began
to report mysterious symptoms.
BRUNO: There were these tens of thousands of
polio survivors who were thirty years or so
down the same road, and were having trouble
at the same time, and were presenting to their
doctors all at the same time, and fortunately
some of the doctors were listening to this.
And some were particularly well suited to listen.
Doctor Lauro Halstead had polio when he was
18, and recovered so well he climbed Mount
Fuji three years later. But in the early eighties
just getting through his daily routine was
grueling. He started to investigate, and has
worked since on defining the mysterious condition.
It's proved hard to pin down.
HALSTEAD: It’s not a diagnosis you can
see on an xray or you can see on a blood test,
it’s basically a diagnosis of exclusion
which means you have to rule out other conditions,
and it’s a diagnosis based on history
so it depends on the skill of the examiner.
And also the experience of the examiner.
Especially when people don’t remember
they had polio.
SOUND UP: DOCTOR HALSTEAD'S CLINIC
HALSTEAD: Hi
NEUBAUER: How are you?
HALSTEAD: Hi I'm doctor Halstead
Rhonda Neubauer had polio when she was 11 months
leaving her with a small limp. [BIG BREATH]
The 49 year old from Maryland has come to
see Doctor Halstead at the National Rehabilitation
hospital in Washington DC .
She's concerned about new cramping in her
arms, which the polio never outwardly affected.
NEUBAUER: Some of my fingers are weaker and
I've been having some little bit of muscle
cramping, and I've been told it's not carpal
tunnel , the only other thing that could be
causing that, that I know of not being in
the medical field is arthritis and I've never
been told I had arthritis.
He recommends an emg, an electromyograph to
determine if she did have polio in her arms.
Dr Mila Yu, Halstead's colleague, does the
test. He brings in a trolley with a computer
and small control box, it looks like an ordinary
pc. He takes a thin two inch needle linked
by a red wire to the machine and pierces Neubauer's
right bicep muscle -- about an inch and a
half deep. As she presses on Doctor Yu's hand
the machine measures the electrical energy
the muscle produces.
SOUND UP: EMG, DR YU
YU: Push down, push down
SOUND
YU: This particular muscle was not affected
extensively
This is a normal muscle. But then he puts it
into her deltoid shoulder muscle.
YU: Let's do this. Push down on my hand.
SOUND
This is the sound of an over stressed motor
neuron revving the muscle.
NEUBAUER: So I had polio in both my arms.
YU: Yes
CLINIC SOUND DOWN
The emg gives Halstead a clearer picture of
where the polio was. He recommends Neubauer
doesn't overuse her arm muscles . This could
damage the neurons further and increase any
weakness. But it's still not definite proof
of post polio.
The mystery surrounding post polio leads some
doctors to say it's not a syndrome but simply
the inevitable effect of age on the body.
Motor neurons start to die when we are 60.
Dr Michael Katz is Vice President of Research
at the March of Dimes, a charity which used
to raise money for polio.
KATZ: I think there are people who have an
increase in their incapacity, whether this
constitutes a syndrome . It's very important
to remember that these are people who are
aging.
But Richard Bruno responds that the number
of symptoms and their extreme nature are usually
far beyond what would be normal for the person's
age.
BRUNO: The notion that old people just sort
of disintegrate and fall apart is not true.
And when polio survivors come in and they're
50 years old and they're asleep at 4 o'clock
in the afternoon, and they can't think of
the names of their family members and they
can't focus their attention and they can't
walk up a kerb and their local doctor just
says well you're getting older.
There's also a lack of belief because polio
has been forgotten by doctors, society and
patients. But Halstead and Bruno both see
people who slipped through the medical net
once. It could happen again if the memory
of a fever, however slight years ago, and
distant, isn't connected with new weakness.
Bill Johnson assumed his strength would always
hold up and forgot about the polio. It was
a shock learning about post polio.
JOHNSON: I said that’s crazy why should
it come back, no one has that answer, not
God, not Doctor Gawne no one has the answer
so you take it as it comes, take life as it
is.
Even without the answers, polio survivors find
they have to accept this cruel legacy. This
is Molly Thomas reporting.
%%%
PART TWO: TREATING POST POLIO SYNDROME
HOST INTRO: Thirty five years after they had
polio, some survivors are experiencing renewed
muscle weakness, intense pain and fatigue.
This post script to polio is called post polio
syndrome and it's estimated that a quarter
of a million people nationally could be affected.
Molly Thomas reports in the second of a three
part series what treatments are available
for this condition.
MOLLY THOMAS: Bill Johnson and his wife Mary
are waiting in Doctor Anne Gawne's office
at the Roosevelt Institute in Warm Springs
Georgia, on a sunny January morning. Yesterday
Doctor Gawne diagnosed sixty two year old
Bill with Post polio syndrome. This morning
the Johnson's who asked that their names be
changed will learn what can be done to relieve
Bill's intense joint pain and fatigue, hallmark
symptoms of the condition.
SOUND UP: GAWNE'S OFFICE
Bill sits in a motorized scooter borrowed from
the Institute. He looks less tired than yesterday
but nervous. Mary sits next to him on the
plush sofa fiddling with her notebook. Dr
Gawne starts by explaining that when Bill
had polio 54 years ago, it left his joints
severely damaged, and now after years of walking
they've worn down.
GAWNE: So the main thing that we can do is
to get you to walk less often and that's the
reason for power mobility so what we've done
is write you a prescription for a motorized
scooter and you can get that as soon as you
get home. ...Here's the prescription.
Mary checks the prescription is correct.
MARY: Your client's degree of disability is
such that...
To walk from one end of their 865 square foot
apartment to the other Bill has to stop three
times. And the maximum pain killers have no
effect on his pain. So there are high hopes
for the scooter.
GAWNE: Once you start using the scooter the
pain should really start going away. As soon
as you get that.
JOHNSON: I really hope so
MARY: Just from the time we're here
JOHNSON: Yes to today, Sunday to today I haven't
walked much because I was in the other chair.
My pain level has gone down.
MARY: At least twenty degrees. [29]
Dr Richard Bruno treats post polio at Englewood
Hospital in New Jersey. There's no cure he
says, but there's one answer.
BRUNO: What you have to do is manage the symptoms
which can be done very very effectively. And
if your body is telling you that something
is wrong you need to listen to it, and back
off, and keep the remaining cylinder that
you've got.
To conserve that cylinder experts recommend
PACING. Post polio is caused when the nerves
that fire the muscles wear out, so to keep
them going people need to slow down and rest
frequently . Often family doctors don't realize
this and prescribe exercise to cure fatigue
making it worse. Getting the right information
is vital but difficult -- there are only 14
post polio clinics and 161 specialists in
the entire country.
Two thirds of patients take the weight off
their feet by using crutches, motorized scooters,
wheelchairs or canes.
And they pace. It can't replenish energy stores
forever, but it helps dramatically, even in
extreme cases like Bill's.
BRUNO: The worst case scenario is that when
people do what they need to do to take care
of themselves their symptoms plateau out,
but the majority of patients are significantly
better, pain goes away, muscle strength increases
and fatigue decreases.
SOUND UP: PAT RYAN ON HER SCOOTER IN THE NEIGHBORHOOD
Pat Ryan buzzes down the sidewalk on her scooter
which looks like a mini golf cart. Bumping
over the cracks and uneven kerb cuts she's
on her way to the supermarket near her home
in lower Manhattan. She looks carefree on
this warm Sunday afternoon, but the last two
years have been difficult. Although she felt
the first twinges of post polio 14 years ago,
in January 1996 her energy plummeted. Now
she paces in ingenious ways.
PAT RYAN: Let me get my little list out.
At the supermarket she powers up the aisles
deciding what groceries to get. She spots
the spaghetti sauce she wants on the top shelf.
From her bag she gets a two foot metal pole
with a handle at one end and a pair of pincers
at the other. To save reaching she lifts it,
and through a mixture of pushing and pulling
with the grabber she maneuvers the jar down
into her basket.
CRASH OF TIN IN BASKET
SOUND OF RYAN IN HOME
Once home she sits down in her wheelchair for
a break. She finds this stop go, stop go works.
RYAN: Well it allows me not to become so utterly
exhausted that I'm practically incapacitated
you know, where I have to sleep or I have
to just sit in a chair or I can't even go
down for the mail or whatever. It gives me
the chance to do something and then rest,
and then do something else and then rest.
Shopping in the afternoon is followed by a
night in. Going out in the evening follows
a quiet day of paperwork.
She measures every little energy expenditure
against her body's credit limit. If she's
overdrawn the fatigue is unbearable.
RYAN: It's as though I had run a marathon.
I mean it's the same, doing little things
it's an exhaustion kind of thing. The whole
body feels like somebody's holding you down.
That you just can't do it anymore.
But even if pacing is the answer Doctor Richard
Bruno finds polio survivors rebel.
BRUNO: The biggest problem we have with polio
survivors . Treating their symptoms is easy,
it's getting them to take care of themselves
that's so difficult. The worst thing we can
do for a polio survivor is make them feel
better which happens very quickly.
Then they forget.
BRUNO: What do they do, they go back and do
all the things that they used to do and go
right into the crapper. And they don't know
why.
Treatment that slows you down goes against
the grain for polio survivors. In the 1940s
and 50s intense exercise was the main treatment.
Paralyzed children could walk again after
vigorous rehabilitation. It seemed like a
miracle. But it planted the idea that they
could just keep going and going. Now when
polio survivors get weak again, getting on
the treadmill seems like the obvious answer.
BRUNO: More is better, use it or lose it feel
the pain. Feel the pain, feel the burn and
that just doesn't work for polio survivors,
and in fact makes them significantly weaker.
Which is why they're weaker now. Which is
why they're having PPS, because they've felt
the burn for too long.
Weaker by as much as 75 percent.
Pat Ryan battles constantly to slow down. Before
post polio she was a jackhammer always pounding
away at life, as a reporter at The Herald
Tribune, or when she was boss of her own public
relations firm. Accepting pacing means accepting
a lifestyle governed by inches. For example
when the scooter won't fit down a supermarket
aisle or a theater entrance. Her walking was
always awkward, but now she feels disabled
for the first time.
RYAN: It's very frustrating and no I have not
accepted it, I am still working at coming
up with solutions to all of this. In addition
to the crutches, the wheelchair, the scooter,
we're finally getting to the final stages
of the double leg braces and the physical
therapy. I'm finally learning to walk again
on the braces, I just won't be able to do
as much, as often, as long or as far.
SOUND UP: CLINIC AT WARM SPRINGS
At Bill Johnson's evaluation the importance
of taking it easy is stressed by Linda Palmer,
the Occupational Therapist.
LINDA: If you're tired and you can't do anything
then you can't it's not you refusing.
JOHNSON: That's common anyone would say that,
if you can't go on. then you can't go on.
LINDA: Don't push yourself
JOHNSON: I don't do that anymore
LINDA: Don't go that extra little foot any
more down the hall.
JOHNSON: I don't do that any more, I'm afraid
to because I know I can't get back
A retired taxi driver from New York, Bill smoked
60 cigarettes a day since he was ten. He's
not used to being helped by anything or anyone.
He accepts the changes but he's worried using
a scooter will be embarrassing.
JOHNSON: People look down on you, people either
pity you, or they look down on you, and you
know what I do. They don't like what I say
to them, but it's the two magic words, F off.
And I look at them I tell them, aren't you
happy to be walking.
But he's feels more optimistic now.
JOHNSON: Now I know the extent of what's wrong
with me, I'll work around it. I'll make do
with the scooter. That will be my lifeline.
The evaluation is over and the Johnson's get
ready to leave.
JOHNSON: Thank you doctor, go enjoy your lunch.
This is a powerful baby.
Bill Johnson rolls out the door and down the
corridor, his wife remains behind for a moment,
hesitating.
MARY: It's so neat - he's not moaning. What
a difference. What a difference.
This is Molly Thomas reporting.
%%%
PART THREE: PAST AND PRESENT
ANCHOR INTRO: Sixty years ago polio was a word
that struck dread into every parents' heart:
an unpreventable virus that would leave their
children paralyzed and crippled. The fear
it raised was transformed into a mission to
stamp it out, led by President Roosevelt.
But as Molly Thomas reports in the third of
a series, the crusade's success masked the
lasting legacy of polio: Post Polio Syndrome.
MOLLY THOMAS: On a cold November day twenty
five people have gathered in a warm room of
a Scarsdale library. Men and women from what
looks like their mid forties to late eighties
have come together to discuss the one thing
that unites them: Post Polio Syndrome. Some
sit on motorized scooters and in wheelchairs,
others crippled and on crutches move awkwardly
to their seats. A few walk in quickly and
sit down at the back ready for the meeting.
Mary Callaghy, the head of the Group, introduces
the guest speaker
SOUND UP: SCARSDALE SUPPORT GROUP MEETING
MARY CALLAGHY: It's now with great pleasure
that I present to you Pat Laster who is a
yoga instructor and a great many other things
of which I can't remember then all..
APPLAUSE
Pat Laster has come to teach the group how
to relieve stress.
PAT LASTER: Basically my whole premise is to
health yourself. As you know you can't rely
on the doctors. You all know that don't you.
MARY CALLAGHY: Yes, very much so.
PAT LASTER: With a vengeance.
A slight woman, Pat sits at the front and starts
by gently rubbing her neck. People copy her.
PAT LASTER: Rub your hands together, so they
get nice and warm.
This self massage will provide relief when
ordinary medicine fails.
PAT LASTER: Take your hands and rub up and
down your cheeks.
Thirty five years after people first had polio
some survivors experience new weaknesses in
their limbs, as well as joint pain and crushing
fatigue.
Afterwards Mary Callaghy leads a discussion
MARY CALLAGHY: Anybody else have anything they'd
like to share or any problem that they're
having. That they ould like to get any help
with.
Seventy year old Mary sits with a desk in front
of her chair. This gives her weak arms support.
A pair of crutches is laid down neatly at
her feet.
WOMAN: Mary I wondered whether or not anyone
had found an answer to painful joints from
overuse. That they had something prescribed
to do. We can't stop using our arms and they
just get more painful.
MAN: Yes that's a good one. What do you do?
MARY: Not everybody can take Tylenol or Asprin,
and truthfully I've found them to be absolutely
useless. They couldn't even touch the pain,
they just couldn't touch it.
Mary is head of this Post Polio group which
serves the greater New York area. It's one
of over 200 support groups that exist for
the condition, which affects about 250,000
people nationally. The groups provide emotional
and practical support.
CALLAGHY: It's not only sharing experiences
it's sharing knowledge, and you've tried this
and it worked for you, well maybe so and so
will try it now and maybe it will work for
them. And that exchange of ideas is worth
a million dollars.
It's so valuable because fellow survivors are
the only source of support. Not just for the
physical pain. The survivors help each other
confront the demons from the first polio attack.
SOUND UP: ARCHIVE FROM THE MARCH OF DIMES
In 1937 Franklin Roosevelt himself a polio
survivor, formed the National Foundation for
Infantile Paralysis, as polio was then known.
A charity to vanquish polio forever. People
called it the March of Dimes because that's
what they gave. The ten cent pieces flooded
in.
FADE ARCHIVE SOUND
During these years polio was a plague. Each
summer epidemics caused widespread terror.
Mothers stopped their children going to movie
theaters and beaches stayed deserted during
the outbreaks.
GAYLE: I do remember the sense of almost hysteria
my father felt. My brother had had polio some
years before. In fact, the house was quarantined
and noone would play with him, so to have
yet another child come down with it, I think
was pretty devastating for my family.
JOHNSON: I remember a young girl there in
an iron lung. Her name was Mary. I remember
her dying while she was there. It kind of
shakes you up.
ELEANOR BERK: My mother did not mention the
word polio, it was like a dirty word. I think
it would have been better if they thought
I'd been pregnant, and I'd gone off to have
a baby. It would have been nicer than having
polio and less of a disgrace I guess.
In 1955 a vaccine was developed, and polio
was declared conquered. Church bells rang
out the good news around the country. ...
When the number of polio cases diminished
so did the fear, and the memories.
Mary Callaghy had polio at nine. After rehabilitation
she went back to school, back into the mainstream,
with a heavy brace on one leg. Later, she
was able to drive, and even climb the steep
steps to the L subway train. She got married
and had three children. She forgot about polio.
CALLAGHY: I had a decided limp but I was managing
and it was wonderful. I thought I'd licked
the demon so to speak.
SOUND UP: CALLAGHY'S VENTILATOR
Today Mary has post polio. This sound is from
the ventilator she uses to help her breathing
problems. Sitting next to her bed the shoebox
sized machine has a long tube that links to
a face mask. The machine supplies her with
air when she's supposed to be asleep.
MARY CALLAGHY: And of course it wakes you up.
Breathing difficulties are one of the more
recent problems associated with post polio.
The muscles regulating the flow of air start
to deteriorate as people get older.
Mary finds walking increasingly difficult,
so it's hard to get about. It makes the condition
very isolating. Twenty five people attend
the support group meeting, but she has 180
people on her mailing list.
It's a lonely life she says, all the more so
because polio survivors feel abandoned --
regarded as relics from another age.
MARY CALLAGHY: That's part of what makes the
loneliness is the frustration and there is
nobody out there trying to do anything to
make this any easier for us.
Any research projects are small and done on
shoestring budgets. And there's no March of
Dimes anymore for polio survivors. In 1979
it changed its mission to birth defects.
Doctor Richard Bruno is a post polio specialist
at Englewood Hospital in New Jersey. He says
the most promising research at the moment
concerns nerve growth regeneration, which
could potentially halt muscle weakness. But
any answers are a long way off. Instead he
wants money spent on education to alert people
to polio's legacy.
BRUNO: I think what we should do is take every
single dollar and every single man hour and
OK make it our mission to inform every polio
survivor in the world of what PPS is, that
it's real, and things we can do to manage
their symptoms and feel better and function
for a long time.
At the moment the support groups alone provide
the information. But there's a large problem.
BRUNO: These groups unfortunately are run by
polio survivors. Now there's something. A
group to help polio survivors run by polio
survivors who are so tired and fatigued. And
this support group is to talk about them being
tired and fatigued. I've always said that
no polio survivors should run support groups,
but if that were true there would be no support
groups.
MARY CALLAGHY: The doctors can't seem to even
believe that I'm doing what I'm doing. In
view of all the limitations that I do have.
SCARSDALE AMBIENT UP
It's hard to mobilize people when they're tired
and weak, let alone those who cannot accept
the polio is back as post polio.
GAYLE: I came to one of these meetings the
first one I ever came to probably two years
ago, and I was so horrified I fled and this
is the first time I've been back to the support
group, and I can sit here and it's OK, in
fact it's nourishing it is therapeutic, but
two years ago I couldn't get out of here fast
enough, and I didn't talk to anybody and I
got into my car and I drove home and I think
I just sobbed.
CALLAGHY: If I can help anyone along the path
of life so to speak then I want to be there
even if it's just listening giving them some
hope, because without hope nobody is going
to fight.
The World Health Organization plans to eradicate
polio by the year 2000. But post polio specialists
here are beginning to get inquiries from doctors
in Africa and India reporting mysterious muscle
weaknesses in their patients.
This is Molly Thomas reporting.
-end-
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