Ann Hazard puts the PPS puzzle together

I was raised in La Jolla, California-the town where the Salk Institute is located. I am 57 years old and confirmed that I’d had polio about 10 months ago. When I questioned my 87-year-old father about it, he admitted that I “might have had a mild case of polio,” and then promptly went back into denial and refused to speak of it again, until recently.

It took about a decade for me to finally put the PPS puzzle together. Back in 2000, I had a dentist who had to cap my two front teeth because of yellow bands of discoloration. She said these were from being given massive doses of antibiotics when I was about 3. She asked me if I remembered any major illness at that age and also asked me if perhaps I’d had polio. She was quite familiar with the disease.

That got me to thinking. I had some odd memories of being kept in a dark room, unable to walk. I remembered that I was about 3. These are my first memories! After my conversation with my dentist, I asked my mom about it … but all she told me is I had some kind of problem for a short while where I couldn’t walk. No big deal. Never in my home was the “P” word mentioned.

I obviously recovered from the polio and lived a normal, active life until I turned about 50. My only problems were a slightly off-balance gait. But after 50 I began to slow down and experience increasing pain. After swimming five miles a week for over 20 years, I had to stop. I didn’t think much of it, just figured I was wearing out certain muscles and joints and it was time to scale back. I figured I had arthritis.

But over the next five years there was more joint and muscle pain, fatigue and some degeneration in the muscles in my right leg, which is the one that doesn’t work so well. I did a lot of research on the Internet and the whole polio thing kept coming up. Then I found out about PPS. I was pretty freaked out and wanted to go back to thinking I had an injury that would heal in time – not that a bunch of neurons that were dying off!

I am so grateful to have found PolioToday.org. I will do anything I can to help get the word out. I have no doubt that too many of us are either unaware, misdiagnosed or have mistreated when we get to the truth.

More research needs to be done. More doctors need to become aware of PPS. It seems to me it’s like Fibromyalgia was in the ’90s. No one ever heard of it and those people who said they had it were too often treated like they were slightly crazy.

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Comments

11 Responses to “Ann Hazard puts the PPS puzzle together”

  1. Bonnie R.H. says:

    I happened upon your story today and wanted to tell you that my story parallels yours in many ways. I contracted polio at age three in 1955. My legs were paralyzed, but after physical therapy at home, I lived a pretty normal life. I had troubles for example, when trying to keep up with my friends while biking , doing pull-ups at school, and pain when we’d go to Disneyland (I also grew up on Ca.). But there was never a correlation drawn to my having had polio. In fact over the years, I stopped including the disease when I would complete health information forms.

    Problems arose periodically; I’d trip when I was tired, I began experiencing more pain in my feet and legs and had prolonged pain and weakness in my legs following the birth of my daughter. By the year 2000, my strength and stamina began to falter. I couldn’t run up the stairs from our basement anymore and had to discontinue my runs and workouts at our local health club. I began loosing strength in my arms and was exhausted when I would sit down after preparing dinner.

    I thoroughly searched the internet and realized that I probably was suffering from PPS. I began to carry PPS literature from doctor to specialist as each tried to figure out my increase in pain and fatigue. Everyone of them said they could attend only to their specialty – and oh, “I think you’re too young to have PPS.” Even my general practitioner refused to read the materials and said I’ll likely have more important issues as I get older (that was the last time I saw her!) I finally found a physiatrist in Portland on the internet. His vast experience and knowledge of PPS has been a lifesaver for me and for my family. I also have a new GP who very respectfully works as part of a team of helping professionals (physiatrist, sleep specialist, massage therapist) to support my health.

    With the support of my family, my physiatrist, Salk’s excellent new Polio Today site, and new friends who are also polio survivors, I’m happier now with knowledge and support for who I am. I’m not being ignored, considered a hypochondriac or being patronized. I’m learning how to pace myself and use assistance devices when I need to. There is strength in knowledge … and in numbers. Thank you for speaking out.

  2. Ann is a member of First Coast Post Polio Support Group.
    You can also see her story on our webstie. http://www.firstcoastpostpolio.com

  3. Paddy Craig says:

    I can totally relate to what you said in your story Ann. Although i was diagnosed with Polio when I was 4 as I grew up I sure made use of my limbs, trying to do my best to compete with the able bodied creatures! And now PPS has settled into my limbs and if I only knew then what I have found out now I would have conserved my energy, took care of my healthy limbs and they wouldnt be so worn out today!

    I live and work in the Middle East where the doctors are mostlly expats and I’m afraid they do not know anything about PPS. Havent a clue, which is very unfortunate for me.

    But thanks for your story. Take care
    Paddy Craig, Sultanate of Oman

  4. Cheryl says:

    I am so glad I found this information. I often feel that even though I know and was treated for having Polio at age 3, I must be losing my mind and “making things up”. Some of the later signs and difficulties just don’t fit what I thought I knew about the disease. Just recently I was having a wonderful family vacation when someone accidentally stepped on my sandal and I went straight down on my “bad” knee. I was very lucky that nothings was broken and I am healing. The healing process seems to take twice as long as that for people who never had Polio. By reading several articles and stories I am beginning to see that there is nothing wrong with my thinking and I need to educate my family so they don’t think I am just exaggerating my experiences as I age.

    I have never found a Doctor who had any knowledge of PPS and ignored any information I copied for them so they could help me. I keep trying and may have found one who actually has some knowledge. I’ve only seen her once and she did not dismiss my problems as all of the others have in the past.

  5. Susan says:

    Great job to each of you. In 1994-96 after 7 different doctors I too found a Physiatrist and after many visits diagnosed me with PPS. She saved my mental state for sure. I wasn’t thrilled with this but its do-able. With the right out look and a site like Polio Today we each can rest knowing that there are many many of us. We survived this once and we will do it again.

  6. michael Brunt says:

    I am a UK resident but polio affected many people in many countries and my experience is very similar to that of Ann Hazard.
    DON’T WORRY SON YOU DO NOT HAVE POLIO, IT’S ONLY INFANTILE PARALYSIS

    All those years ago in 1946 when I was just 4 years old and several of my friends had contracted polio and were in this box that mum described as an ‘Iron Lung’. She told me, ‘two of your pals have been taken to be with Jesus’. Of course when I became ill shortly after, how could she frighten me with the mention of the dreaded polio. My illness was much less dangerous. So I have spent my life knowing that I had the lesser problem, infantile paralysis –‘ No problem son’ said Mum ‘ your legs are very thin and weak but you will get stronger in time’
    Five years of ankle length brown boots and callipers followed until eventually just before my eleventh birthday I was strong enough to throw them away. Shortly after this I went away to boarding school in West Sussex and was immediately immunised against polio. Thank God for that, I will never get the dreaded illness that killed my friends.
    From this time on I went from strength to strength, playing rugby, cricket, swimming, athletics etc. After leaving school in 1960 I continued with soccer and athletics until my early thirties. I met my wife Margaret in 1961 and we were married in 1965. By 1970 we had two children, Michelle born in 1967, and Adam in 1970. My career was spent in the computer industry from which I retired in 2000.
    Up until this point in my life I cannot remember any serious illness. However in 2001 I developed a slight limp. Following this I suffered pain in my hips and by the end of 2003 had two hip replacements. A short while later I noticed that the muscles in my right leg were deteriorating and my balance was going. Many years of visits to Consultant Neurologists at William Harvey, Guys, and Kings College Hospitals followed. Four MRI scans, four nerve conduction tests, a lumbar puncture and four days in Kings for IVIG treatment failed to diagnose the reason that by 2010 I was unable to walk without the aid of crutches and the muscles in both legs had virtually disappeared. By the way as an added complication I was diagnosed with prostate cancer in August 2007.
    It was not until April 2010 that I was asked by a Consultant at Kings College Hospital if I had POLIO as a child. Of course I never had polio but I did have INFANTILE PARALYSIS !!! Surprise surprise, how could I be so stupid as to not know that those illnesses are exactly the same, IP=P. All those years ago my dear departed Mum eased my fears by telling me a white lie. I didn’t die and fortunately have lived a fairly normal life, but now the Post Polio Syndrome has taken over and I am resigned to using my wheelchair. Thankfully I have a caring wife and son who help me with things that I can no longer do.
    MY QUESTION IS: How many people are losing the use of their muscles without the realisation that this could be the progressive and irreversible deterioration caused by breakdown of the motor neurones as a result of contracting polio as a child?
    THE ANSWER MUST BE: To ensure that GP’s, Neurologists, Consultant Neurologists, and Professors of Neurology are educated sufficiently to recognise the symptoms of PPS at an early stage. By asking the simple question, ‘Did you ever have polio or infantile paralysis’? This might save the NHS time and money which otherwise would be wasted on ineffectual scans, tests and Consultants valuable time etc.
    Mick Brunt 23.07.2013

  7. PAMELA SWIFT - LATOUR says:

    I GOT POLIO AT AGE 3 ALSO. MY MOM SAID I GOT UP TO GO TO THE BATHROOM AND WAS DRAGGING MYSELF DOWN THE HALL. MY OLDER BROTHER AND SISTER HAD THE MUMPS SO SHE THOUGHT I HAD IT TO. BUT WHEN SHE PICKED ME UP AND SAID TO WALK I JUST FELL ON THE FLOOR AGAIN. I WAS PUT IN HOSPITAL THE NEXT DAY. I GUESS I HAD GOTTEN LOT WORSE BECAUSE THEY PUT ME IN AN IRON LUNG. I WAS IN THERE FOR 9 MONTHS. I DON’T REALLY REMEMBER IT , BUT HAVE A HUGE FEAR OF MY HANDS BEING HELD DOWN. I GOT OUT OF THE IRON LUNG AND WENT INTO REGULAR HOSPITAL BED. I WAS IN A HUGE WARD WITH LOTS OF CHILDREN. THERE WAS THIS GIRL NEXT TO ME. WE LOOKED AT EACH OTHER DURING THE DAY. THAT NIGHT SHE DIED. I WAS SO UPSET I STATED TO CRY. THEY HAD HER WRAPPED UP AND WENT IN FRONT OF MY BED. THE NURSE TOLD ME TO SHUT UP. I COULDN’T SO SHE PUT A THERMOMETER IN MY MOUTH. I BIT DOWN ON IT AND SHE GOT SO MAD. SHE WAS YELLING AT ME. SHE CAME BACK IN AND STARTED TO WIPE THE GLASS OUT OF MY MOUTH, NOT TO GENTLY. ANY HOOT MY LIFE GOT BETTER. HAD A LOT MORE THINGS HAPPEN TO ME BUT THAT’S ANOTHER STORY. I NOW HAVE 5 BROTHERS AND ONE SISTER. WE ARE A VERY CLOSE FAMILY. I ALSO HAVE TWO SONS AND 5 GRANDCHILDREN. PPS IS REALLY STARTING TO GET ON MY NERVES. LITERALY …I HAVE HAD BACK SURGERY. TITANIUM ALL UP AND DOWN. SHOULD NOT HAVE HAD IT !!!! MY LEGS ARE VERY SKINNY, WEAR SPECIAL MADE SHOES. WEAR A BRACE ON LEFT LEG. I CRINGE TO SAY BRACE. IT’S MY PLASTIC FOOT. I USE A WALKING STICK, NOT A CANE. HAVE A SCOOTER NOW. SOOO MUCH BETTER. I CAN GO SHOPPING AGAIN. YIPPI. I WAS A LETTER CARRIER FOR P.O. LOVED THAT JOB. IT WAS HARD WORK WHICH LED ME TO MY DOWN FALL. I WAS A TOP CARRIER WITH BIGGEST ROUTE. HAD TO BE THE FIRST ONE OUT ON THE ROAD AND FIRST ONE IN. TIMED MYSELF ALL THE TIME. SO NOW I HAVE THIS OVER WORKED, BLOWN OUT, POOR ACHING BODY. ARMS ARE GONE LEGS ARE GONE, BUT I LOVE TO LAUGH AND MAKE PEOPLE LAUGH. MY GLASS IS 3/4 FULL. BUT AM A LITTLE WORRIED ABOUT MY BREATHING. LOTS OF HEADACHS. LEG CRAMPS. THANKS FOR LETTING ME TALK. GET SOME STUFF OF MY CHEST. I DON’T KNOW ANY PPS SURVIVORS TO TALK ABOUT THIS STUFF

  8. Martin Good says:

    Thanks to all that have shared their inner most feelings regarding PPS. Like all of you, especially so to Pamela Swift, I also have had Polio when I was 7 years old, in 1950 during the height of the epidemic. Reading your accounts of PPS, brings back many , many memories. It was on a Sunday afternoon and the family had all sat down to the dinner table and shared the mid-day meal. I was feeling a bit sore and very tired and asked Mother if I could be excused form the table and she said yes. I told her that I was not feeling well and wanted to go lay down, and Off I went to the bedroom. I then laid down and began to feel chilly, and tried to reach for the covers and I could not reach them. My legs and back and arms were very sore and I could not move far enough to reach the blankets and cover myself up. I then curled up into what is called the “fetal position”. I stayed that way until Mother came in to check on me, about 30 minutes went by before she came into the room. She saw that I was “curled” up into a ball shape position and reached down to straighten me out, and NOTHING she tried. worked. Mother then called my Dad into the room and he tried to straighten me out—and could not do it. Dad told mother to—-“he is just tried from playing so hard today”, so just let him rest and sleep. The next day, Dad had left for work after him and mother had checked on me and still they could not straighten me out. Dad then told mother to call the doctor if I was not able to stretch out from the position I was still in…the “fetal position”. A few hours later, after Dad had left for work, for the evening shift, mother came in again and was trying to help me move my legs and arms and NOTHING was working the way it should. She then decided to call the doctor. The doctor arrived and checked on me and told mother to call an ambulance and get me to the hospital right away….your son is not responding to anything I do for him. He did some other checking of the muscles in the arms legs and back….nothing was working right. He told Mother then that “your son has all the symptoms of POLIO”. I will call the shop where your husband works and tell them what has happened and to allow him to come home right away. The shop foreman then called the State Police and told them what was going on and asked if they could provide an escort for Dad to come home right away. The police head-quarters said “we’ll have two officers there right away”. When the officers arrived at my Dad’s work place, the foreman had called my Dad into the office and told him that his family doctor had called and told us that your youngest son, Martin has Polio. These officer are here to give you an escort all the way to your home, form here. The officers told Dad that one of them would take the lead and the second one would follow behind my Dad’s car, with red lights flashing and siren’s going, all the way to where you live. Please stay between the two of us, the officers told my Dad. By the time Dad had arrived home, they were putting me into the ambulance on a stretcher. The next thing I remember is that I was in the hospital and laying in a bed covered with hot wool army-type blankets; this was the quickest way to get heat to the affected muscles; later, when the doctor arrived in the room, he asked mother and Dad to step out into the hallway and told them the bad news….that I had been stricken with two viruses from the polio epidemic that was sweeping the country at the time. He told them that there were 3 known Polio viruses, at the time then, and that they were (1)…VIRAL infection, (2)…BULBAR infection, and (3)…SPINAL infection, of Polio. All of the test that have been done indicate, beyond any doubt, that your son has two of the strains…the BULBAR and SPINAL infections. He is completely paralyzed from the neck down. My bed was beside the door of the room and was ajar just a small bit , but I was able to hear all of this talking and what was said. I then heard my Mother ask “tell us, if you can Doctor…”What are his chances of recovery”? The doctor told them that I had a very slim chance of survival and that I had only a 1 out of 10 chance to survive this. I could not breathe because of the paralyzing affect on my body form the neck down to my feet, but thank God my brain was not affected. This is why I could still hear OK and understand….even at 7 years of age. I knew what a “1 out of 10″ chance of survival meant. I was placed in an Iron Lung or a year and then daily hot water hydro therapy, to get my muscles to work again. After being removed from the Iron Lung, I had to be carried to the therapy tubs, until I could walk there on my own legs; and after the initial onset of Polio, I was released to go back home….2 years later and try to return to as normal a life as possible. I will celebrate my 71’st birthday ….next week. After returning home again from the hospital, I was not allowed to paly sports at all during my school years. I was not allowed to drive a car, truck or tractor until I became of legal age. I went on and was the first child, of 6 children, that received my diploma, on the stage, while Mom and Dad were in the audience watching. I went on and led as normal a life after high school and even received an honorable discharge from the U. S. Navy in 1963. However, there was a glitch in the system and I was called into an official U. S. Navy,= medical board of review, while serving on board a ship, in Japan. In short, the review board had asked me point blank….”HOW DID YOU GET PASSED THE RECRUITING STAGE of enlistment”….your file indicates that you had POLIO at age 7 years…”Yes, Sir’s” was my reply. I explained how I went through all the requirements and passed all the test’s needed for enlistment….and the next thing I knew I was on a plane to California for my Boot Camp training, and was then assigned to ship duty and duty overseas, for four years. The Commander in charge of the review board told me that I should never had been accepted based on your medical history. I was the told by the board of review Commander in Charge that it is the finding of this board that you will be sent back home and returned to regular life. You should NEVER have been accepted in Chicago for enlistment, in the first place. But you were and we will give you the option of either flying you back today to your home or sailing back with you shipmates. Your record of service is clean and nothing derogatory will be placed into your file. Your service while enlisted, shows me no reason for anything but an honorable discharge. I then related to the commander that, of the two choices I have for discharge, I would much prefer to go back stateside with my shipmates. Papers were drawn up and I was officially honorably discharged from the Navy, after serving active duty for three years. Years later, the problems began to hit me with sore muscles and I still, today, walk with a limp. The right leg is shorter then the left leg and also it is wider. Back during Polio days the doctors told me that I would always have these “after effects” of the Polio condition and that later in life, when as you get older, it will get worse. I feel confident that to a specific degree that Polio is still with me or has never really left me. It gets harder and harder and harder and takes longer to do things now. So, I thought that it was because of the age factor thing…but when asking a doctor about my continued pains and sore muscles and tiredness and slow walking…no running….I just simply get too “tired” and need to rest all the time, so it seems now. The doctors of today, don’t want to address the issue of PPS or they tell me that “polio was eradicated” after the epidemic of 1950…the same one that put me in the condition I am in now. “it simply does not exist” in todays society”…so they tell me and also that I don’t know what I am talking about; and the biggest percentage of doctors were so young then that they don’t remember Polio and say that the books all say that it does not exist in todays society. Well it does exist for many hundreds of thousands of survivors, like myself and those that have suffered essentially the same as I have over the years….YES PPS is a REAL thing today….and the medical world needs to address it like any other muscular disease. Bones get fragile and break, muscles are weak as well as swallowing food is becoming more and more difficult to do, and the doctors tell me that all the x-rays taken of me show no obstructions. or anything wrong whatever for swallowing food or drinking liquids. Why cannot the Doctors relate to former President Theodore Roosevelt? He had Polio and knew hen that the epidemic would be ongoing…He stared a clinic for Polio patients and PPS patients in Warm Springs, Georgia and it is still going strong today…but the doctors won’t talk about that or won’t recommend it as a treatment place for PPS or Polio patients of today…at least all of the doctors that I have talked to about Polio or PPS and very few, if any at all even recommend it as a treatment center for Polio victims. Yes, I still suffer fro the effects of the Polio I had in 1950, and now 65 years later, it is coming back to haunt those of us who have suffered essentially the same over the years and have gone through this time with a “Doctor and Hospital” world that does not believe us, or that Polio even exist today. Thank you all for the words of your input and I hope to some small degree even, that what I have shared will be of some help to “someone” out there….Blessing to all and God be with us as we journey through the coming days and years….Three other people had come down with Polio when I was diagnosed with it in 1950, from the same bug that gave it to me…..my neighbor….Johnny; my oldest sister and my cousin. Johnny is the only one that did not survive, and I was almost the second one……but I made it through the years. but now it is getting more and more difficult to swallow food and liquids…. and sore muscles all the time as well as constantly being tired. Good Night and may God Bless all of us……

  9. Sherri says:

    I had Polio in 19446/47, my parents weren’t sure of the date, only that I was 3 or 4 yrs. old. I was born in Kansas & our little town of Hutchinson was hit especially hard. There was not a bed in the hospital for me, so I stayed at home on the sofa & a nurse & doctor visited me daily. When I reached the age to attend school I always had to take a note explaining that I had had polio & was not allowed to participate in any activities such as running, skipping or gym class.
    As I got older the doctors ingored any complaints & said that once you were “cured, you were cured” and because I had use of my legs they even questioned my having polio.
    Now I am in my 70’s and the strength in my legs is going. The fatigue is quite unbearable, particulary after a long trip and I still can’t find a doctor who seems to know anything about polio. They were all born after the Salk vacine was available, so they just attribuate my problems to “old age”!! Sadly even my husband & children don’t understand why I cann’t keep up as I once did. I love to travel, but now I dread it…. the pain & fatigue is so hard to deal with, takes almost a week to recover. But, we somehow find the strength to go on don’t we?

  10. Helen Kempton says:

    I am 71 years old and contracted polio at age 6 in 1949 living in Queens, New York. My right leg was affected, it is 1/2 inch shorter and the muscle in the lower leg is alot weaker than the left. As far as I know, I have no symptoms. What should I be aware of and is there anything I shouldn’t be doing?

  11. Rita Rostron says:

    I was diagnosed with polio in 1952, confirmed by spinal tap. Spent several weeks in hospital, wore heavy brace from knee down, hooked into my shoe for almost a year on the right leg. Married in 1953 – subsequently had 5 children. My personal history included a period of 8 years as church organist at a major military installation – all services, a piano studio with up to 65 students per week, while raising family. In 1973, military transfer for my spouse caused an elimination of my musical activities, so decided to enroll in college for a musical degree. Graduated in 1977 – 3 ½ years, Summa cum laude, degree in organ/piano performance. Now at age 81, still a church organist, as well as accompanist for resident chorus for major performing arts center. Ultimately, arthritis caused left hip replacement (2006), left knee replacement (2011), and in November, 2011, had Rt total hip replacement. Subsequent Rt hip problems include 7 rt hip dislocations, in April 2015 had hip revision. For the past two years, I have complained to family that my left leg was ‘fatter’ than my right leg. Right leg muscle atrophy? May not be new, just not noticed previously. Currently right leg is 1 ½ “ smaller at the thigh above the knee, 1” smaller at the calf. Right leg is also 2” shorter than left. Now that the hip revision has reduced the likelihood of dislocation, I am suffering from right hip and thigh pain…Right leg is becoming weaker, requiring the use of cane while ambulating any distance. Multiple leg cramps in right leg at night. Ache in right hip and thigh. Getting more tired and having to rest each day. Does this sound like PPS?

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