Were There Dragons In Your Life?
For those of you who want a seriously intense page on post-polio syndrome this may not be the place for you. I have learned that I have to look at things with a sense of humor to survive. I will provide some links to sites I have found either useful, interesting, or humorous. I will give you some helpful hints, things I have learned because I have had to, about what to expect from post-polio and how to conserve energy. I will give you a few names of books, etc. that I have enjoyed. I will also show you who I consider at this time in my life to be my three best friends.
BUT, first a bit about me, my story, and my experiences with polio and post-polio. I love dragons, by the way, they are magical creatures who over come a lot of prejudice in their lives. I think we have all had a few dragons in our lives. Either that or we are the dragons overcoming the obstacles and prejudices in our lives.
I was diagnosed with polio on Christmas eve 1953 when I was 5 1/2 months old. So........... I don't remember a lot, heck I don't remember anything, about the initial problems I had. I do know some one thought I might have had the flu. I do know that my brother, my doctor's children, and I were among the first people to receive the Polio vaccine in Jacksonville, Florida. I was evidently pretty bad off at first, with lower extremities and possibly upper extremities affected. I never made it to an iron lung which was good because they couldn't figure out how to make one air tight for me since I was so small.
I had a Dennis Brown bar brace connecting my shoes on the bottom. I had a full leg brace on the right side and crutches for a while. I then moved to a half leg brace with lovely brown oxford or saddle oxford corrective shoes. I later only had to wear corrective shoes. When I was about 13 I stopped wearing corrective shoes. I still walked with a significant limp and my right leg was shorter and had muscle atrophy. That was that! Or so I thought.....................
I have had several operations, "corrective surgeries", over the years. All of my operations were done by a wonderful doctor who if alive now would have to be over 100 years old I think. His name was Doctor Lovejoy! I love that name. He always made sure we, the kids he operated on, felt comfortable with him. He always took the time before surgery to show us the equipment he would use for our surgery and to explain what he intended to do. He then took more time after surgery if you needed a cast to dye the plaster. This was long before the many color choices available today. Then he would draw pictures on the cast but was sure to leave room for friends to sign. He always signed the cast.
I had staples put in the growth centers of my "good" leg to stop it from growing while small pellets of cow bones (?)(that's what I was told) were put into my growth centers on the bad leg so it could catch up (you see, cows grow faster than people do (?)). The staples were put into my good leg several times. I remember once to correct knock-knees which may have been cause by the stapling in the first place. I had muscle transplants from toe to foot and foot to toe so I would use the toe muscle to pick up my foot but it would be in my foot so that would be okay. (I'm so confused!!) I had fusion of toe bones to prevent hammer toe. I had muscle lengthening surgery in my hip and remember being in a traction that hung down rather than up so my muscle could stretch.
I have some not very good memories of hospitals. I remember being there for what I thought was entirely too long at a time. I can remember making friends in the hospital with the other children who were there. It doesn't seem to me that a child should be in the hospital long enough to make friends but I am sure many of us were. I remember those friends but didn't keep in touch with any of them for some reason. I was in a hospital ward for a few visits and I didn't like that much. I'm not sure exactly why though.
In 1988-89 I had begun having some trouble with my legs, both of them I thought but I wasn't quite sure. I had fallen down a few times from what seemed to be my good knee buckling or my bad foot dragging. I went to my regular doctor who sent me to an orthopedic specialist who said I was just fat! Another one said "It is all in your head!". So I was a tad bit frustrated to say the least. When I asked if this could have anything to do with my polio I was either told, "I don't know anything about polio.", "Of course not!.", or "It is all just your imagination." One night I was reading the Reader's Digest News of Medicine section and they were talking about something called Post Polio Muscular Atrophy. They described these symptoms, these symptoms I had been having for about a year now.
I called Warm Springs Georgia to see if I could get my old records. The people there told me that it was too long ago. Hmmm! Thirty-six years is too long? My mother some how came across a newsletter called Options put out by a post-polio group in Washington, DC. They described Post-Polio Syndrome (PPS) and told a a few clinics which could help diagnose PPS. These clinics were pretty far away and very expensive and at that time PPS was not covered my most insurance companies.
About a year later in the same newsletter a clinic in Bowie Maryland was named and at last I could go for the evaluation. I was seen by a neurologist, physician, social worker, psychologist, physical therapist, and occupational therapist. It was expensive but I finally had what I needed a diagnosis. I left the clinic with a prescription for a brace and a crutch for my right side, and explanation for my excruciating pain, some good information to pass on to a doctor in my area, if I could find one, and a good dose of anger that needed to calm down.
Well the crutch worked well but when I got the brace reality set in. All of the years I had been able to do things I enjoyed doing and the reality of what I had been denying for the last year or two was hard to take. I spent a day crying and hating that brace as much as I had when I was a kid and used to lock my self in the bathroom with my brace, a hammer and me and beat the brace up. I probably only did that a couple of times! But the brace did whelp a lot. I did have to modify the way I did things at home and work. Luckily I had a set of wonderful bosses who let me instruct them in the way they could help me make changes to my work place so I could continue to work for as long as possible.
After a year with the one crutch and brace I went to two crutches with the brace. And, in an attempt to make what is already a very long story a bit shorter than I could make it if I continued to ramble on, I used them for about 2 years then got an electric scooter which I used in the community and at work. Two years later I got a manual wheelchair which I use now for work and community. I use the scooter to walk my wonderful dog around the neighborhood and very rarely use the crutches on a good day if I want to go somewhere that is not accessible. Diagnosed with Peripheral Neuropathy on top of the PPS has been a challenge. BUT.... I did find a very good neurologist who is now my primary doctor for my PPS and who works very closely with my family doctor to make sure they understand each other. They help me manage my pain, fatigue and life and health in general.
I did have to quit working full time due to extreme fatigue and pain which greatly hinders my concentration. However, I work as a Consultant and set up my own contracts which allow me to set the pay and hours I work.
SO............. What have I gained by this experience called life? I have learned to do what I want when I want even if I have to do it in some bizarre manner. I have learned that I need to please me and my body. I have learned that my house wont fall down if I don't do dishes every day. I have learned that I need help with a lot of things. I have learned to ask for help. I have learned that the great anger I feel at life sometimes is okay. I have learned to express that anger to the few friends who will listen. I have learned that the few friends who will listen are probably the only ones who are really friends. I have learned to really look at life with a sense of humor if at all possible.
MOST of all I have learned that life goes on and you find or create ways to stay happy!
- Polio.net - Information, support groups, newsgroups, chat rooms.
- Polio Survivors Page
- Rolling Rat
- The Lincolnshire Post-Polio Network
- Post-Polio Syndrome Central
- Polio Connection of America - Lists of doctors, newsletter, insurance information
- Polio Experience Network
- "Paralyzing Fear" a film about Polio from PBS
- Philips Quick Start Guide to Post-Polio Information
- Post-Polio
- For a fairly good news group use
alt.support.post-polio - Use your news server to subscribe then do a search on polio or post-polio to find this newsgroup.
Some Good Books - I found a pretty good variety of books on polio available on line at Barnes and Noble. Do a search on keyword polio at their site. Listed below are three books I especially enjoyed.
- Small Steps by Peg Kehret This is her recollection of her experiences with polio. I brought a lot of forgotten memories back for me.
- Managing Post-Polio - A Guide to Living Well with Post-Polio Syndrome by Lauro Halstead This is a good book for those of you who haven't exactly figured out what is going on with your polio or ways to help yourself adapt.
- FDR's Splendid Deception by Hugh Gregory Gallagher - The story of FDR and the efforts to conceal his disability from the public. Search on author's name to find this one.
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- Avoid stairs if at all possible.
- Take time to rest
- Be alert to and aware of changes in your body. Heed these signals from your body.
- Get enough exercise to prevent atrophy but not so much as to produce overuse damage.
- Pace yourself.
- Prevent injury from falls however possible, use a cane, crutches, wheelchair, scooter etc.
- Figure out and use alternative methods to complete routine tasks or chores. Sit down to wash dishes, use a shower chair and hand held sprayer, sit down to vacuum, sweep etc.
- Find a doctor who is post-polio aware or at least one who will work with and learn from you. You must become a partner with your doctor.
- Purchase a grabber and a small magnetic wand (available from stores that sell adaptive equipment and from Wal-mart - the magnetic wand is in either the automotive, tool or sewing sections)
- Have muscle testing done every year to measure stability or loss/gain. This should be done by a physical therapist or a doctor who knows about neuro-muscular diseases - mine is done my my neurologist.
- Swim in warm water as often as possible.
- Avoid strenuous, vigorous strengthening programs. This may aggravate the condition.
- Discontinue exercise that cause pain or extreme fatigue. If it takes longer that 15 minutes to recuperate from the exercise consider discontinuing it.
- Conserve energy.
- If your kitchen is not built for accessibility - pull out a drawer and place a cutting board over it for lower counter space for chopping vegetables etc.
- Place telephone extensions in every room possible in the house.
- Do major grocery shopping once a month if possible.
- Have a long hose (long enough to reach from sink to stove) attached to sprayer in sink so you can fill pots with water on stove thereby eliminating having to carry pot to stove. Let water completely cool before emptying water. To boil pasta, etc. put a strainer in pan before adding pasta. This way the strainer can be lifted out of water instead of having to carry a hot pot of water to sink to drain in colander.
- Don't be afraid to ask for help.
- Be creative, adapt your environment to your personal needs.
These are my best friends by far. Betty just because she is. My wheelchair because it helps me be as independent as possible. And, my scooter because it allows me to take Betty for a long walk every day.
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(Me!
When I was 15!)