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

7 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

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