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Post-Polio Health (ISSN 1066-5331)

Vol. 12, No. 1, Winter 1996

Additional Insights, continued

Marylou Brewer, RN, Director, Training and Information Dissemination, NIDRR Research and Training Center, Rehabilitation in Neuromuscular Diseases, Department of Physical Medicine and Rehabilitation, University of California, Davis, California 95616-8655 describes their current swallowing research project directed by E.R. Johnson, MD.

The goals are:

In Polio Network News (Vol. 6, No. 4), in the article, "A Review of Swallowing Difficulties in Post-Polio Individuals," Roberta Simon, RN, offered these common-sense suggestions:

June Price, editor of Living SMArt, a newsletter for individuals living with spinal muscular atrophy, and Nicole Roberts, suggest the following from their personal experiences on ways individuals with swallowing problems can better cope with eating out.

Sharing Experiences

Kim Johnson, Arizona: I am honored to tell my mother's story and have used her own words from letters and other documents as much as possible.

My mother, Bernice Alexander, New Jersey, had bulbar polio in 1948 at the age of 21. She was hospitalized for four months. Polio atrophied her vocal cords and her voice changed radically to a monotone. Atrophied neck muscles made swallowing and breathing difficult. At the most critical acute stage, due to the inability to swallow, she "drowned" from fluid in her lungs. She was brought back to life but had various problems with swallowing for the next 45 years. Reeducation was directed at swallowing, speech and trying to turn and hold her head up. Physiotherapy focused on use of all her muscles: arms, legs, posture, etc. She learned to "balance" her head with the use of substitute muscles, primarily her hands.

The left side of her throat was worse than the right. She would chew her food VERY thoroughly, in small bites, before attempting to swallow on the right side of her throat. Choking was not uncommon. These bouts of choking took quite a long time to subside due to the breathing difficulties. She would often use small pieces of bread or warm water to help dislodge whatever was stuck.

There were various stages of swallowing problems experienced due to post-polio syndrome. She started to avoid foods including tomatoes and other fruits and vegetables with seeds as well as most red meat. She preferred to eat custard, yogurt, chicken and bananas.

After double pneumonia in 1989, she never seemed to regain full strength. She would be short of breath when walking and did not sleep well. After a New Jersey post-polio conference in 1990, she consulted a specialist in polio breathing problems who prescribed breathing support by using a BI-PAP® machine while she slept. She used this for over six months and experienced better sleep and heightened mental alertness. However, the daily shortness of breath remained.

During the week of October 15, 1991, she had a minor head cold. Her voice was getting weaker but she did not realize it. On October 18th, her throat started to get sore, and by the next day, it was very sore. This was not the sort of sore throat associated with a respiratory infection. It was becoming more difficult for her to speak as the day progressed, due to the tightness in her throat and chest.

She was rushed to the hospital that evening. Her larynx and vocal chords were paralyzed. There was a lot of swelling so very little air could move through her trachea. Mom also had a low platelet count. Hematology support was required to raise the platelet level before a tracheostomy could be performed to allow her to breathe. After the tracheostomy, mom used a nebulizer at night instead of the BI-PAP® machine.

Mom was very focused on obtaining more information on post-polio problems and participated in a study in January 1993, at Yale University by Dr. Carol Gracco and Dr. Carl Coelho. Food types of varying consistency were used and tested for her swallowing. The diagnosis read "pharyngeal transit was mildly decreased with minor pooling in the pyriform sinuses noted after each swallow. Subsequent dry swallows only partially cleared this status." The recommendation was to alternate liquid and solid swallows.

in a letter she sent to me, she said "I now have a different life living with a trach. The ambiguity of the situation is that my breathing, especially while sleeping is very much improved. The other side of the coin is the time and care involved in maintaining the trach. My low platelet count leaves me open to bleeding problems, and I have not been to work, a mall or a movie since October. I wish I had understood my problems more clearly. When my breathing insufficiency was diagnosed, I did not understand that the root cause was not any new involvement with my lungs or diaphragm, rather they were being affected on a secondary basis by the gradual weakening of my vocal chords and their inability to permit air to travel through them normally."

Mom passed away on July 23, 1993, of lung cancer. She was a courageous lady with a very full life raised a family on her own, cared for a home, pursued a professional career, traveled and was actively involved in her church.

If mom were alive today, she would recommend that whatever problems you may have with post-polio syndrome, be it swallowing, breathing, etc., do not get discouraged. Seek out additional physicians. Help them to find more answers and better equipment to solve, or at least ease, the problems. Reach out and help them to help you and others.

Pat Novak, Ohio: Thank you for thinking of me. I hope my experience and suggestions are helpful.

Let me encourage anyone with swallowing and aspiration problems, and fatigue to the point where it is impossible to meet nutritional needs through using the canned formulas, (including adequate water intake, medications, etc.), to get a gastronomy tube, also called a "stomach peg." That is the route I chose in the summer of 1993, and I have never regretted it. The most important advantage is that I can control the fatigue of the swallowing muscles. Before the tube, the fatigue kept getting worse, and I was aspirating to the point of chronic bronchitis.

Another important advantage of my tube is that it solved my terrible anxiety about how I was going to eat and drink. My family, doctors, and even the nurses were amazed at all my anxiety. I was climbing the walls! It is amazing what you can get used to and even learn to love.

I can now take in some liquids and purees by mouth, but all my main nutrition goes in the tube. I eat no solid foods. Cool or cold water is difficult to control because it feels "slippery" in the mouth, so I take small sips of warm or hot water instead.

When my throat and mouth muscles are tired, all my liquids and formula go in the tube. I am not losing weight, am healthy, and lead a fairly normal life. Few people, except those I choose to tell, know. When I go to a restaurant, I order ice cream, which is easy for me to eat. I go to the pool for water exercising with no problem. My "balloon-type" tube needs to be replaced about every six months, which is an easy, pain-free procedure done in the physician's office.

Another issue that is very important to me is speech. My throat and mouth muscles become easily fatigued by too much speaking. I take a pad and pencil with me wherever I go and use it to help control the fatigue. This takes a lot of self-discipline ... I would rather talk!

I also recommend someone with speech problems to see a speech therapist affiliated with a hospital to learn new speech habits. A therapist has worked with me to change my voice pitch and breathing patterns while speaking. I am now learning sign language, which is a big undertaking, but lots of fun and very interesting. I know that using a small microphone can help but, I have not tried that ... yet.

Talking on the telephone seems to be the most fatiguing of all, so I have a TDD and use it when I am really fatigued. Other than that, I try to space my calls and keep them short.