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.

Share:
  • Print this article!
  • Digg
  • del.icio.us
  • Facebook
  • Mixx
  • Google Bookmarks
  • Twitter
  • E-mail this story to a friend!
  • FriendFeed

Comments

5 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.

Leave a comment...