Post-Polio Health (ISSN 1066-5331)
Vol. 11, No. 4, Fall 1995
Vera Overholt, Minerva, Ohio
In 1950, I was completely paralyzed by polio. I spent six months in the iron lung, but slowly through therapy I reentered life unable to lift my arms.
Post-polio respiratory weakness was a phrase I did not like to hear, thinking that my chest cuirass which I used at night would be adequate. I was wrong. I had heard speakers discuss positive pressure ventilation and masks at the GINI conferences but as an active individual, teaching three grades in a private school, doing family things, going on vacations, participating in church activities, I just did not have time to think morbid thoughts about respiratory collapse.
The body can be pushed only so far and at 42, you are not what you were at 16 (even without polio). Push came to shove. I became weak so I pumped more vitamins and iron pills. After reporting dizziness one summer to our local physician, I was treated for inner ear problems, although my ears looked clear. Being an optimistic person, I refused to admit that there was a serious problem and knew I would be better in the fall when it was cooler. I was getting older, you know.
While visiting the dentist, I had to leave the chair and the building, because I was so claustrophobic and dizzy. I began to have trouble breathing when I brushed my teeth. Other things began to happen. I would actually fall asleep in the classroom helping the children with their work. They would scamper off to get me a cup of coffee to help me stay awake.
My Amish-Mennonite family of five sisters and five brothers came to my rescue. My sisters saw my dilemma better than I. They literally forced me to seek medical advice. I was referred to Dr. Edward Sivak who understood my problem and suggested a nasal mask over the phone. I tried to convince him that I only needed a better fitting cuirass. He very patiently listened and made an appointment for me. (Edward Sivak, MD, is now at SUNY Health Center in Syracuse, New York.)
I will never forget the first time I tried the BIPAP® System and the mask. I was afraid of it. I immediately jerked the mask off my face when I felt the air. In my heart I knew it was either this or a tracheostomy. I did not want a trach.
Once I quit fighting the mask, and accepted it as a friend, it began working. Now I look forward to putting it on at night. I just let the air enter my nostrils and soon I am asleep. This took at least two months to happen though.
I no longer have those severe headaches at the base of my neck in the morning, no abnormal sleepiness during the day, no swelling of the ankles. My color is very good, and my strength is back. I have a zest for life.
Sheila Stuckey, Cincinnati, Ohio
I had polio in August 1949, and was completely paralyzed. Within hours after admission to the hospital I was placed in an iron lung where I remained for 2-1/2 months. After recovering with weakness, I did not have any other breathing problems until I had surgery in 1984, and after that I had yearly exams by a pulmonologist. In 1990, following surgery, I went into respiratory arrest. Since that time I have used the BIPAP® S/T at night with a Sullivan Bubble Mask. It lowered my CO2 and made it possible for me to return to the working world.
I have had some problems with a pressure sore on the bridge of my nose. When the pressure becomes too bad I use ADAM nasal pillows by Puritan-Bennett for a week and then go back to the mask. I find the pillows uncomfortable, and do not like the rush of cold air going up my nose. If I have any air leaks around the mask, I just put some cotton under the leaking area. A mask that fits comfortably is important in adjusting to BIPAP® System. Also, don't fight it - try to relax and let it help you breathe - you will feel so much better.
Jean Graber, Pretty Prairie, Kansas
My three-month hospital stay in 1952 included six weeks in an iron lung. I have complete paralysis of one arm and weakness in the other, plus some additional weakness in the shoulders and upper back, but I had no respiratory problems until 1980. Beginning with IPPB treatments using Provental on a Bennett AP-5, I had to add night-time ventilation - first with an Emerson Poncho Wrap and then in 1987 with a Bear 33. I use a custom-made, acrylic face mask that has no straps or bands. it is held in place on my face by a bite-wing type mouthpiece. (The mask was made at Dallas Rehab Institute by Sue Sortor Leger, RRT, now in Lyon, France.) I can get in and out of it independently despite the limited use of my arms. I sleep on my back or side and can move comfortably at night.
The Bear 33 has a deep-breath sigh cycle which has been most beneficial. Having an AP-5 in my school classroom and a Monaghan with cigarette lighter adapter for in-car IPPB treatments has allowed me to keep teaching and attending workshops, etc. Since I drive 35 miles a day to school, I "rest" on my Bear 33 with a pipe mouthpiece, again using the cigarette lighter adapter for power while traveling. (I steer the car with my left leg by placing it in a yoke and moving my leg to the left or right as needed.)
Allan Gouldburn, Whitby, Ontario
I contracted polio in August, 1953, and was in an iron lung for approximately four months. I was left with severe paralysis of both arms and a drop foot on the right leg.
I began using a Thompson Maxivent, a negative pressure unit with a fiberglass/plastic shell over my chest in January, 1984, after a bout of pneumonia. This unit did the job, but was uncomfortable, difficult to travel with, and required constant adjustment of the padding on the shell to keep it sealing properly.
I converted to a Respironics BIPAP® System in March of 1992. I use the standard Respironics silicone contour mask, size medium small, without the mask support ring and with a number 6 spacer. I use the unit with the humidifier placed on a small heating pad every night while sleeping and sometimes during the day when I lie down.
For pressure sores on the bridge of my nose, I tried many different masks, finally going back to the original. I now cut most of the adhesive ends off a band-aid and put it on the bridge of my nose every night. This, combined with careful tightening of the mask and routing the air hose up over my forehead seems to keep the pressure sores at bay. Routing the hose over my forehead also seems to stop air leaks around my eyes without having to tighten the mask excessively.
My mouth and nose were very dry in the morning, but the humidifier has reduced the problem. My problem with a runny nose has become less severe, but I still have to blow my nose a lot for the first hour after I get up. Periodic diarrhea, possibly due to ingested air, is still a problem. Since I never know when it may occur, I take an Imodium pill the day before important activities and cross my fingers.
Alan D. Fiala, PhD, Falls Church, Virginia
I had polio in 1952, was hospitalized for three months, partially paralyzed in one arm and one leg. I also was left with kyphoscoliosis, but no pulmonary difficulties. In 1981 I had a spinal fusion with Harrington rods. In 1984 1 began having noticeable pulmonary problems (in hindsight), but did not recognize them until pulmonary failure hospitalized me again in 1985.
I have been on nocturnal ventilatory assistance for sleeping since then. I progressed from chest shell to pulmowrap to intermittent positive pressure using LIFECARE's PLV-100 and a Respironics nasal mask. The early Respironics masks leaked badly and abraded the bridge of my nose. I used one inch surgical Microfoam tape on my skin for a seal and cushion.
After the GINI conference in 1989, I had my dentist make a fitted hard mask with a bite plate, which I used for several years, but it always leaked badly around the swivel fitting because I need such high pressures. It finally became unsatisfactory.
After the GINI conference in 1994, I began using the newer Respironics fitted mask with cushion, which is OK, but using the Microfoam tape with it is even better. I have not been able to adapt to a lipseal for oral use, nor could I use nasal pillows. I expect to try a custom mask in the near future. I find that respiratory therapists do not know how to find optimum settings for a ventilator or mask, and use trial and error. I had a sleep study in 1993 which should be part of any evaluation of the late effects of polio.