Polio Diaries – Episode 5

And so it was that on Monday December 28, 1953 my parents returned me to hospital.  Christmas was over and I don’t remember any more of it than my dad throwing up.  Friday January 1, 1954 I entered what was to be my first complete year as a rediscovered individual and that year would include a revolutionary new treatment regime.  The Sister Kenny polio treatment process was just beginning to take off in North America but that is a whole other story.  I will save it for a separate episode.  Needless to say there was serious resistant to this treatment initially due to professional protectionism rather than the benefit to the patient.

As I have said my pre-polio memories are limited.  I could probably dig some up if I were to look at a more intensive hypnotherapy approach in conjunction with some heavy duty regressive therapy but to what purpose.  I don’t really believe that my childhood was that traumatic, just different.  The only other pre-polio memory I have in regards to walking, besides the walk/collapse down the hallway to tell my mother I didn’t feel well, was going to the outhouse with snow piled higher than I was tall.  This was Winnipeg and it was winter

Although we had moved to the city by then my parents first home in Winnipeg had no plumbing.  We had an outhouse.  This is an important detail because one of the ways the polio virus is transmitted in through fecal matter.  Nobody used Lysol to clean their outhouses.  In fact I’m not even sure the floor was ever swept, it was a dirt floor.  The polio virus can live for up to two weeks in a persons body after it activates.  The activation concept is important because a person can carry a latent virus for a long time but it isn’t until it activates that it becomes contagious.  That little detail is even more important today.  With the federal government having cut the Interim Federal Health Program we now run the risk of every new refugee coming from a country where polio still exists to re-introduced it to Canada.

The virus lives in a persons intestines and can also live in a persons throat.  The throat process makes it an airborne contagion and is carried by water vapour when a persons sneezes.  It can also be spread through the fecal matter that we all produce so it is always best to thoroughly wash your hands after changing your babies diaper.  Once the virus is activated a person becomes contagious immediately and can continue to be contagious for up to two weeks after developing flu like symptoms.  Once the virus has run its course the damage is done and the chance of affecting others is over.  One of the problems today is that most doctors don’t know what to look for because there is a belief out there that polio has been eradicated.

With the virus having run its course you are now polio free however you are now dealing with the paralysis created by the virus.  The way the virus does that is by attacking the nervous system in the spine that controls muscle movement.  This is an important distinction because it doesn’t affect the column of nerves that affect sensory (or feeling) factors.  Unlike a spinal cord injury, a polio survivor has sensory ability (feeling).

This is an important distinction.  Paralysis doesn’t just affect the muscles that provide ambulatory functioning.  It affects the muscles that control breathing, bowel/bladder functions, and all of the other muscles that hold various anatomical processes in place.  I had one close friend, now passed, who could actually feel her ribs sagging.  For myself if it wasn’t for the sensory factor I would have bigger issues with bowel/bladder routines.  My muscles in those areas are a little weaker so I rely on the sensory to know when I have to head for the bathroom.  It’s not just about walking, it’s all the other little things that so many people just take for granted.

That ability to feel also cuts back on issues like pressure sores, the ability to walk effectively and so much more.  What people don’t seem to realize is that if you don’t know where your feet land when you are using crutches your balance is really impaired.  I have friends with spinal cord injuries and their issues are so different from mine.  If you don’t know where your feet land you have no idea if there is a pebble there or not.  And a pebble can throw you off balance just as easily as a rock.  It’s these little things.

Anyway until next time.  I’m going to go and enjoy the sun.  In the meantime here’s a little video from the CBC archives (no sound) that shows why we shouldn’t be letting this devastating disease get a toe hold in Canada again.  Enjoy!

Just one man’s experience.

Polio Diaries – Episode 4

Poster children like veterans should be more than photo ops!
Poster children like veterans should be more than photo ops!

I am going to switch gears today to discuss supportive alliances.  Polio survivors have had numerous alliances over the years and often the survivors were not even aware of them.  One of those alliances was in the form of the Canadian Paraplegic Association and by extension Canadian veterans.  Although formed to support returning WWII veterans with spinal cord injuries the Canadian Paraplegic Association became a major voice for polio survivors.

Prior to World War II there were few survivors of spinal cord injury (SCI); virtually all died shortly after injury.  Veterans who managed to survive the tragedy of combat during WWII returned to Canada to find a country with little to offer people with disabilities, except to perhaps languish in a veteran’s hospital or ill equipped nursing home.  The same changes attributed to the longevity of polio survivors also contributed to the successful survival of these vets.  Advancements in health care and technology.

The Canadian Paraplegic Association came about following World War II due to the high numbers of spinal cord injuries returning as veterans.  A group of veterans decided to take matters into their own hands to advocate for better conditions and opportunities for vets with spinal cord injuries.  In 1947 Harold Ballard offered free office space in the Toronto Maple Leaf Gardens to a group of veterans and the CPA was born.

Once the CPA had their foot in the door they began to become a voice for a wide range of individuals dealing with paraplegia and polio was one of those groups.  The connection between veterans and polio survivors was born shortly after the Korean War and the introduction of the polio vaccine.  That connection became a relationship that has existed for over 60 years so when I read about the federal government denying any “social contract” with vets I knew I had to speak up.

Social contracts are not new to the Government of Canada and denial of them is not new to the Conservative Party.  Paul Martin Senior, was the Liberal Minister for National Health and Welfare from 1946 to 1957.  He was also a polio survivor from 1907.  He spearheaded the introduction of the polio vaccine and sat as the honourary chair of the day for the March of Dimes.  His government entered into a “social contract” with polio survivors telling them they would never have to worry about supports from a monetary perspective.  In 1957 the Progressive Conservative under the leadership of Diefenbaker took power and began to back off from that agreement almost immediately.

This social contract was renewed and extended to survivors of the thalidomide debacle of the early 60’s.  Even though this drug had been pulled off the market in Europe and other countries due to birth defects the PC government of the day in Canada refused to act.  When the Liberals came back to power in 1963 they took up the cause and offered support to all of the babies who had been affected by this inaction by reopening the concept of the social contract.  There is a history of social contracts in Canada and sadly there is a history of the Conservative governments backing away from them.

There is a strong connection between Canadian veterans and polio survivors.  Most of todays polio survivors are children of veterans.  Most baby-boomers are.  My father was a veteran and support from the Canadian Legion played a big part of the financial support my father received due to their polio fund.  There is a strong connection between veterans and polio survivors which I will never forget.

So when I read how this government denies any social contract exists with our veterans I get angry.  When I see a $4 million ad telling Canadians really nothing except to promote the Conservative government I get angry.  This government can waste 4 million in tax dollars while shutting down veterans centre and eroding services to veterans makes me angry.  As someone who has spend a lifetime fighting for the rights of polio survivors I cannot sit back and let this go unchallenged.

I know how the issues facing veterans are dividing them.  This seems to be what this government does.  They use a very divisive approach which turns people against each other and I am seeing this in the veterans community.  I have also seen this approach work well with members of the community living with disabilities.  After all it is quite frightening to think you are biting the hand that feeds you.  With that said, when you are invited for a meal and upon arrival you are placed in the kitchen and given the scraps the hand isn’t really feeding you.

I will always support vets because they were always there for me.  They were always there for our country.  My dad, my uncles and so many others did not go to war because it was a hobby.  They went to fight for freedom and democracy.  We are now faced with the slow erosion of everything they fought, died and suffered for.  I cannot in good conscience sit back passively and let this type of behaviour continue.

I know @PatStogran  is trying to get one million followers on his Twitter account to show that Canadian believe in our vets.  Pat Stogran is continuing his battle for the rights of veterans and I would plead with everyone who reads my polio diaries to show your support by signing up to follow him.  After all if this government can deny our veterans what they deserve then why did we send them off to fight for democracy?

Just one man’s opinion!

 

Polio Diaries, Episode 2

Memories from my early polio years are pretty vague so I do have to work at retrieving them.  However with the 60th anniversary of the vaccine introduction to Canada coming up in 2015 I do feel it is important to log some of this before the first hand experience disappears forever.  Particularly right now with what appears to be the growing reemergence of this devastating disease.

I work on retrieving these memories through information gleaned from conversations with my mother.  i also spend time in the evening meditating with my talk-to-text recorder in hand.  As a memory solidifies I record a couple of lines so I have a mnemonic to work with later.  I hope this clarifies some of the questions I have had regarding my memories from such a young age.

So it was that following my spinal tap I was immediately admitted to hospital.  The fear of polio was so high at the time everyone diagnosed automatically went into an isolation unit.  The numbers had grown so high that a whole hospital became the isolation unit.  In Winnipeg that hospital became the King George Hospital and the central hub for polio treatment.

Now this is from Google and not my memory.  In early 1951 there were three cases of polio in the King George and all had respiratory paralysis.  All three died.  Nine months later that number had increased to 75.  In 1952 those number climbed to 150 and in 1953 the numbers grow past 2000.  They will never be 100% accurate due to the potential for undiagnosed cases from the farming communities.  Polio was never diagnosed without a spinal tap and they weren’t done unless there were signs of paralysis.  Many of these cases went undiagnosed, in part, because the symptoms looked a lot like the flu and didn’t always result in any form of initial paralysis.  Many cases that went undiagnosed were identified much later with the onset of post polio syndrome but that wouldn’t happen for another forty years.

My memories of the hospital are scattered.  I do remember I was in a dormitory type unit.  The numbers were to great to even consider four or six bed units.  It was like a hive and there was a constant buzz of activities.  Besides the sound of the iron lungs in motion there were constant sound of sobs, crying and, with some of the older kids, friendly chatter.  And since family were not able to visit this environment became your world.  My mother to this days expresses feelings of guilt over not having been able to get in to see me for the first four weeks I was there.  But that was true of every other child there so the other sound that was constant was that of the nurses soothing a distraught child.  There were also continual whisperings among the nurses regarding a wide variety of issues on the unit.

Polio living in an iron lung
Polio living in an iron lung

What I do remember is the rows of iron lungs.  If you showed signs of respiratory distress you went into an iron lung.  Now these were big machines for such small bodies and all that was outside the machine was ones head.  Inside this machine was a large bellow like apparatus that would create a negative pressure effect to keep a person breathing. Technology has come a long way but there are still people dependent on these antiquated pieces of technology.  The numbers are difficult to find however in 2004 there were a reported 39 people in North America still dependent on these machines.  We really have no way of knowing about third world countries.

Sippy cups took on a whole new meaning then which is different since nobody knew what a Sippy cup was then.  They were little more than miniature metal teapots.  You seldom received hot beverages due to the heat convection along the metal spout.  Nurses, very different from the walking degrees we see today, had a pattern and would feed us in a rotation.

Again the numbers were to high to really have iron lungs spread all over, thus the iron lung pod.  These were designed in a such a way that the staff could enter them like a small room and attend to the physical needs of all four kids in the lung.

The numbers were to high to have full iron lungs all over thus the pod!
The numbers were to high to have full iron lungs all over thus the pod!

I do remember having to establish your swallowing to time with the chest pump.  If you tried to swallow during the wrong cycle of the pump you would choke.  It became a team effort between you and the nurse to time the eating properly.  The nurse had to be alert enough to know when to put the spoonful of food into your mouth and you had to know when to swallow.  This made you very dependent on the nurse and, in hindsight, required a level of blind trust.  After all at 3 years old you don’t make conscious decisions about things like trust, you just do.

Another memory that jumps out at me now but meant very little at the time was the number of children who were taken off the ward and never returned.  I don’t recall giving it any thought but it was a daily event to have someone taken out on a gurney covered with a sheet.  I do remember some of the nurses would just say they were playing hide and seek.  But the harsh reality was that these kids had died.  But again at 3 years old death meant very little.

It wasn’t until later in my life, during my time in the Alberta Children’s Hospital that death took on more meaning.  But then people die in hospitals everyday and that is just a fact of life.  It may not be one most people really want to look at but it is reality.  Hospitals are not a TV drama show where everything comes to a successful conclusion at the end of the hour.  The deaths did slow.  What had been a daily event in Winnipeg became a rare event in the Alberta Children’s Hospital.  I do know, very vividly, that between the time I was 8 and 12 I had lost four good friends in that hospital. Compare to the stats in the King George that was minimal.  However with age came awareness so those deaths at the Children’s had more of an impact.  But that’s a story for another time.

Fortunately for me I was only in an iron lung for two weeks before they decided I could breathe sufficiently on my own.  Polio was a weird disease.  You never know what level of physical impairment would be left until the virus had run its course.  I have polio friends from back in those days that walk with a limb while others still need breathing assistance as well as the use of a wheelchair.  I had one good friend who could do everything except swallow.  She used no ambulatory devices but had to tube feed herself all of her life.  I have no idea where she is today.  We lost touch in the late 60’s.

Having these memories has really spurred on my desire to do this little project.  The idea that something as simple as a vaccination can keep this type of event from happening again motivates me.  With polio starting to raise its head in little pockets needlessly I believe people need to be made aware of the ramifications to everyone in our society.  Another polio outbreak can be and should be avoided.  People may find pictures of cute little poster children uplifting but they tend to ignore the pages and pages of obituaries.  Vaccine, don’t generate.  Polio is avoidable!

Just one man’s flashback!