Experience at Englewood Hospital PPS Clinic

by Rebecca Hesse


Our daughter, Sue Hesse, sent us a copy of her San Diego Union Tribune with the articles about Mary Clare Schlesinger, Dr. Sam Pfaff and Dr. Perlmanıs clinic at UCLA. My husband and I had been searching for help after I found I had PPS and these articles prompted us to go to to the computer and see if we could find a clinic nearby. We live less than 2 hours from New York and much to our surprise we found the Englewood Hospital PPS Clinic in Englewood, New Jersey, only a short one hour drive from our home.

We had information from the Warm Springs PPS Clinic but had done nothing because because we would have to stay in Georgia quite a while to take advantage of Dr. Peachıs help.

When I phoned the Englewood Clinic Dr. Richard Bruno answered the call and said he would send all the information to me right away. Shortly afterward I got an appointment and began treatment on January 5th this year, 2001. I went to the clinic once a week for three and a half months, and now at about three month intervals for a year. Later I will go to the clinic once a year.

On my first appointment I met Dr. Brunoıs team which included a nutritionist, a muscle therapist, an orthopedist and an occupational therapist. I filled out many papers telling them about my survival of acute polio and my recovery and then, after forty-seven years, having the experience of the gradual onset of PPS difficulties starting all over again in 1984. Muscle loss has not been as bad as before except that in the lumbar region there has been difficulty in walking and severe backaches , osteoarthritis, spinal stenosis. The scoliosis which Iıve had since childhood was never painful before, but it is now very painful.

Previous to my treatment at the Englewood Institute I had been told by 3 orthopods that the only path for me led to taking drugs for the severe pain, and a muscle relaxant drug for my nighttime leg muscle spasms. Iım 76 years old and these specialists said there was no operation for me. I was taught a series of passive exercises and was told that I could swim a bit. We live in an over 55 adult community with an 85° outdoor heated pool and I also can use an indoor pool nearby. The Englewood therapy person along with the rest of the team prescribed a 225 lb. motorized wheelchair to be built to fit my back. It has not arrived as yet but we have sold our sedan and purchased a mini van in which we will have a lift installed at the rear. Also, I have a high toilet chair which fits over my low toilet and a seat in my shower. One cane was not enough so I have 2 lapstrang adjustable canes. Next came an under mattress device to help me pull myself up with its bedside handle and get out of bed. Our bed has a foam egg crate pad over the mattress.

I am get ting used to wearing a small leg brace which lifts my left foot to clear the floor and eliminate a slight drag when I walk. The sole of my right shoe has an added 1 ½ inch sole to take care of inches lost from my crooked spine. I do very little walking and am instructed to keep track of my steps each day by using a pedometer. Because of my motor neurons not being replaced any more I must conserve the ones I have left, and exercise must be quiet and passive. For PPS people the familiar adage of “use it or lose it” is changed to “Use it and Lose it”.

Each day I keep a log to show what activities I have done and because the nutritionist wants to know all my daily foods I try carefully to watch my diet and get enough protein at breakfast to carry me through the day.

At first all these changes in my daily life were very difficult. I had been keeping my weight under control by riding my indoor bicycle, a great Schwinn, nearly everyday and this activity was ended, so naturally I have gained some unwanted pounds. My weight is something I find hard to control. I love to cook but now that I can stand on my feet for only a few minutes, I must prepare foods sitting down and my husband Bob does the cooking. We have a good market and Bob enjoys shopping for groceries and comparing prices.

Warm weather has finally arrived in this year 2001, and it has been helpful to sit on the deck and soak up my 15 minutes of vitamin D. It feels just like using my microwaveable heat pad, only it feels good all over! If the pain would subside I would be a different person and all of these routines would not be such a bother. So far, unless I take 6 pain killers a day, I have pain. My body will tolerate only 2 pills a day and Iıve tried a long list of them. Aspirin does not agree with my digestion so take Tylenol and when that fails I really suffer or give in to 2 hydrocodones. Talking to people today, most of them have never heard of PPS and when I explain, they still have trouble understanding. It is a condition that polio victims never anticipated in addition to the normal patch, patch, patch of growing older. One good note is that not everyone who had polio will also get PPS!


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