What Works for Me
I had polio in my right leg in 1956, aged 6. Despite the fact that there is almost no muscle below the knee, I have always had a slight build, which has (I think) made it much easier for me to rely on the other leg. Walking, cycling and hiking are fairly easy, but I do to use hiking boots with a firm ankle support. I have a half-inch raise on my right shoe, but that is something of a compromise – it should probably be an inch, but that would make it much harder to control my foot.
I have also become rather fond of ice skating! This might sound crazy, but there are some amazing ankle supports around, and I find that a really stiff one, worn inside my skate boot, works rather well. I don't use the support for normal activities.
At age 55, I started to get a lot of pain in my right (polio) foot. From hiking the hills, I was reduced to resting part way on the walk from the supermarket to my car! I knew about post-polio, but the doctor didn't mention it, but sent me for some physiotherapy. The therapist decided that I had got into a bad habit of walking with my foot pointing out, which was straining a tendon, and gave me a variety of exercises to correct this. I was extremely skeptical, and almost began discussing post-polio, but I had a go, and over the space of a few months the whole problem went away (and I still ice skate!).
As the problem started to subside, I went to visit a lady who was considering possible supports for my foot. I told her that I had started hiking again, and mentioned a local hill I had climbed. Her look of disbelief (which I could not dispel), told me that it is very hard for health professionals to estimate what is possible with a polio leg – probably because they do not get many cases nowadays. I never told her about my ice skating!
I am writing this to point out that it may be unwise to instantly jump to the conclusion that you have post-polio – give simple physiotherapy a chance first! Also, remember that the professionals may find it hard to assess what you can really do. David Bailey, email@example.com
I had bilateral lower extremity polio in 1953. Although given long leg braces I chose to use my manual wheelchair (I didn't fall down and have to look strange wearing clothing over my braces). In my 50's I began to have pain in my arms and shoulders and subsequent weakness. I was told I had tendinitis, carpal tunnel, and residual polio. After seeing multiple orthopedics, having MRIs and then going to Rancho Hospital in California, I felt hopeless. I did a little research and found the Shoulder and Elbow Society. My physician was trained in an orthopedic hospital in New York and had seen multiple cases of shoulder problems in persons using either crutches or wheelchairs. I had a complete torn rotator cuff injury. It’s been almost two years since the repair and I no longer have pain, I can push the chair and transfer with my right arm. I had to use an electric chair post surgical, and was quite limited, but I as limited as I would have been without his intervention. My siblings have shoulder problems and none of them use a wheelchair. I have found out that a lot of my problems are not from polio, and they can be corrected. It isn't easy going through the re-coop time, but it is worth it. firstname.lastname@example.org
I am an 80-year-old woman who had a mild case of paralytic polio in July of 1932 when I was 3-1/2 years old, while living in a small town in the Boston suburbs in Massachusetts. I had a slight fever and my Dad found me creeping upstairs on my hands and knees. I had been walking since I was 10 months old. He took me to a local doctor who diagnosed polio. I don’t remember very much about the treatment except I was given massages. A few months later a neighbor took three children plus their mothers to the Shriner’s Hospital in Springfield, MA. There I was put in a cast from the knee down. Later the cast was removed and I was given a knee-high brace on high shoes and I went off to school. The brace was removed after a year or so. I went to Shriner’s periodically until World War II began. I never went there again.
As I grew, my left foot did not keep pace with my right foot, so I had a slight limp but I was active otherwise in basketball, volleyball and swimming. After I graduated from college, was married, gave birth to three children, my left foot became more deformed. While living in Pennsylvania, I found a surgeon who had polio knowledge from his residency. In 1966, he performed a triple arthrodesis and tendon transplants, which ideally should have been done when I was a teenager but that was during WW II when I had no medical care.
In 1986, I heard that Warm Springs, Georgia, was doing exams for post-polio syndrome, and I arranged to go there for 3 days. I got a lot of information and was connected to a post-polio support group, which was about 15 miles from where we lived. I also connected with a pain management group and with a neurologist who was very helpful to me for many years. In 1992, I obtained a scooter and used it outside the house. (Today, I do not need it inside small buildings, but I cannot walk long distances.)
My husband and I moved to Florida in 1997 because I find cold weather very uncomfortable, and, in 2000, we moved to an independent living apartment within a comprehensive facility – Life Care. With pools that are kept at 86 degrees, I am able to exercise regularly in the water.
I have recently had a knee replacement in my left leg – the most affected by polio – and want to share the positive experience.
On Thursday, August 6, 2009 I had the knee replacement. I spent three days in the local hospital orthopedic ward – my husband stayed with me most of the time, including overnight - and then I moved on Sunday, August 9, to the nursing center at our Life Care community. We decided to use the facility instead of home health care since the availability is one of the reasons we moved to Life Care.
While in the hospital (Lee Memorial), knee and hip replacement patients had physical therapy at 9 AM and 2 PM every day. We were required to start out walking with a walker to the PT section beginning the day of surgery. An aide, pushing our lounge chair, followed us, so we could sit when we felt we had walked all we could manage. By Saturday I was able to walk the entire distance -- 250 feet.
In the nursing center, I received daily PT and OT for six days a week. Again I was urged to walk to PT, so I did.
I went home from the nursing center on Wednesday, August 26, taking a walker with me. I continued PT as an out-patient three times a week, and also did the exercises at home until September 11. On September 11, I saw the surgeon and was released for six months, since I had attained the goal of bending my knee 120 degrees, plus some other goals including walking without a walker. I reached this goal in five weeks.
I am not aware of any difficulties from my polio except that my left ankle swelled more than usual from the surgery. I am now doing exercises in the pool six days a week including walking in the pool, and doing some of the exercises I did in PT.
My husband is amazed at how well and how fast I recovered. So am I. I walk better than I have in several years.
The surgeon I had does a super job of preparing a patient via an obligatory class before surgery, plus urging that the patient bring a coach to all classes and all hospital PT. Each one of us received a 56-page booklet – typing size pages – which took us step by step through the procedure including exercises to do both prior to surgery and after surgery. It includes exercises for the several weeks of recovery and what goals to aim for in each time period. This helped enormously to deal with fears and concerns.
I gave the anesthesiologist copies of several documents from polio sources describing how anesthesia affects polios differently from other individuals, including the risk of over sedation. He read them all, some during the pre-op session with me. Obviously my concerns were dealt with and I’ve had no complications.
One outcome that was unexpected was that I was found that I have periods of low blood oxygen – 86 or so – and I was sent home with oxygen to use when I sleep. The cause was presumed to be a slight sleep apnea but not enough to require a C-PAP. It is a bonus treatment which makes me less sleepy than I had been.
I am very glad I went ahead with the surgery – it is very much a success story. Helen (Hrockstroh@aol.com)
End of WHAT WORKS FOR ME