Jul 31, 2015

Post-Polio Syndrome (PPS) - It's Not Just About Getting Older

Updated on July 28, 2015

Polio Strikes - From the 1940's to the late 1950's

Polio - that dreaded word that made every parent cringe just to think about in those days. The war was over and it was time for things to get back to normal, when like a lightening strike, the dreaded poliomeylitis virus attacked killing many and paralyzing even more. Schools closed, pools closed, stores closed, children were kept indoors not allowed to play with other children all for the fear of their contracting polio.
At the time, there was no cure or vaccine available. Many were working on a solution but so far nothing that worked. Even when Salk first tried his vaccine, it failed horribly and many of us from those days can remember. Eventually though, through much trial and error, Salk got his patent and we all got our little cubes of sugar with the vaccine and everyone decided that polio was now a thing of the past.
Now came the time for recovery. All of those young people, mostly from infancy to teens, that had been paralyzed had to learn to walk again. Many suffering from Bulbar Polio had to remain in an iron lung to survive. Polio had clearly taken it's toll on this generation of young people. In order to survive, these children had to fight and fight tremendously to regain even a slight usage of their limbs again. Many never did. Many that did, suffered withered limbs or drop feet or have spent a life in cumbersome braces.
However, as with all tragedies, there are some who survived literally unharmed. A smaller group of these polio patients suffered total paralysis at the time, but through the tenacity of physical therapy and probably the forceful nurses that angrily pushed them ahead, they walked again. Many of these grew up without any signs of polio (from the outside) with maybe the exception of one limb slightly smaller, a slight limp, stiff joints/neck and such. But walking about and motivating near normal.
What occurred with these young people is that due to their ages, the damages that the virus had caused to their motor neurons was how the virus acts in the body. Once the virus was killed, these neurons had an opportunity to grow back. The problem was that as the polio survivor aged, and pushed their tired weaker neurons more and more, they began to weaken and die off again. And what resulted? What we see and experience today - Post Polio Syndrome.

The Later Years

For those polio survivors, working so hard all those years to achieve in life, what a horrible thing for them, in the time of their lives when they should be enjoying retirement, they are suddenly stricken by the memories and pains of the past. For those that were able to regain walking, they began to lose it. For those who were able to leave their braces and/or wheelchairs, they have had to return.
When they were stricken with polio those many years ago, while much of the care they received was as though they were lepers, at least to the doctors at that time, Polio was a real disease and not just something that they learned in medical history at medical school.
Today, this courageous group of people are finding few that acknowledge Post-polio really exist, putting these people through more and more unnecessary testing and simple not listening to their patient..... and that is assuming they can even find a doctor that has even heard of Polio! Doctors are wasting precious time and money trying to diagnosis something that if they would get their heads out of the holes they are in and listen, might be able to help preserve the quality of life for the individuals.

The Problem Today

The biggest problem for these courageous individuals that fought a virus and won is that the doctors today don't know how to help them. Many refuse to acknowledge the existence of PPS and insist that the only problems these individuals are experiencing is due to normal aging. Others may say they understand or agree it is PPS, but still insist on more and more testing and delaying any assistive measures that may benefit the patient. And all of this is not even taking the total cost or frustration factor that all of this negligence causes the PPS survivor. There are a few doctors over the past few decades that have stepped out and done some research on PPS, and to those few, we salute you for doing something no one else would. It has been your diligence and research that has allowed many to remain active individuals and understand what's happening to them and to survive again. Otherwise - 
DOCTORS: Polio is a VERY real virus that still exist today, perhaps not in this country as much as others, but it is still a problem. And, as it is still a problem, doctors who feel that ignoring PPS and it will eventually and literally 'die out' are WRONG! This generation that has contracted Polio WILL DEVELOP POST-POLIO and if you don't learn about it now, what hope will they have?

To the Medical Profession - A few helpful hints

How can PPS survivors be helped? By having a medical profession that will listen to them. Here's a few pointers:
  • Have an open mind about this. If you haven't heard about PPS or don't know anything, here is your perfect opportunity to expand your knowledge. Believe me, there will be lots of PPS survivors that would love to know you are at least interested in helping them.
  • Educate yourself about Polio and Post-polio. According to studies, the amount of actual reported cases of polio from the epidemic decades ago is probably only about half of the cases as minor, non-paraylic ones may not have been reported to authorities since they might not have sought treatment.
  • Don't insult their intelligence. Polio survivors are over-achievers and quite intelligent. They know their bodies and have a very intimate relationship therefore, they listen and recognize a problem when it occurs. Take heed to their comments.
  • Listen! When a PPS survivor tells you they can't walk, believe them! Don't continue to ask them really stupid questions like "So, if you could walk, how many blocks could you walk?" REALLY!!! Then, after the survivor tells you again that they can't walk, don't continue with "Well, assuming you can walk and you walk a block, can you stop and rest for a moment then continue another block?" EXCUSE ME...were you listening at all? (And for those of you who don't think this really happens, it just happened this past week for my husband at a Neurosurgeon's interview!)
  • If they tell you they are in pain, they are. These folks aren't drug addicts or dealers just trying to get a fix. 


Thanks for taking the time to read this commentary on Post-Polio Syndrome. Like with most causes getting the word out that this is a real, debilitating problem that still exist, and will exist in the future for others, needs to be recognized and dealt with by the medical profession. 
Please take the time to scroll down and leave me a comment on your thoughts, experience or what else you would like to see added to this type of post. My husband is a Polio survivor. Therefore, I am in a caregiver role. While I don't experience the physical aspects, I see the effects, and it's painful. 

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