Polio survivors who were evaluated and treated in the post-polio clinic at Saint Mary’s Medical Center in San Francisco were surveyed in order to answer four critical questions.
We wanted to know if our advice was useful. Most importantly, we wanted to know how polio survivors felt months or years after visiting the clinic. We also wanted to know why polio survivors thought they felt the way they did. And, we wanted to know what things polio survivors thought helped them to feel better.
We sent out 239 surveys, of which 137 were returned (57 percent). Six were incomplete and excluded from analysis.
Of those who saw the consulting physiatrist, 80 percent felt that the advice was useful; sixteen percent felt it was somewhat useful, and four percent felt the advice was not helpful.
We asked the polio survivors who had been seen by the full complement of the post-polio treatment team how they felt, and 130 responded. Of these, 59 percent felt better, 18 percent felt worse, while 23 percent felt the same.
Patients who felt better:
Polio survivors who stated that they were feeling better following their clinic visit were on average 54.5 years old. Twenty-five respondents were male- 52 were female. The average time lapse since the last clinic visit was 1.7 years. Ninety-five percent of the people who felt better attributed it directly to their clinic visit. Five percent stated they felt better, though they did not attribute it to their clinic visit. Those who felt better were asked whether they felt better, worse or the same in 22 health indicators. This group felt improvement in ten of the parameters – better coping skills, more relaxed, more self confidence, fewer numbers of falls, less pain, less irritability, better sleep, better mobility, less anxiety, greater efficiency, less depression and better general health.
Polio survivors who felt better were asked to choose from twenty treatment options offered by the clinic. Selected as being most useful were: energy conservation techniques (79 percent), non-fatiguing general-conditioning exercise programs (74 percent), early retirement/work cutbacks (59 percent), emotional reassurance (55 percent), power wheelchairs/electric scooters (40 percent), back conservation techniques (31 percent), adaptive equipment (30 percent) and finally, medication recommendations (26 percent). Other options ranked were not statistically significant.
Patients who felt the same:
Polio survivors who indicated that they felt the same after their clinic visit were on average 56.2 years old. Thirteen respondents were male; 17 were female. The average time lapse since their last clinic visit was 1.6 years. Those who felt the same were asked to rank the 22 health indicators, and all of the respondents indicated that they felt the same in each of the health indicators. Asked why they felt the same, many (43 percent) indicated that if they had not visited the clinic, they thought they would have felt worse. Twenty-three percent felt they had learned that they were already doing the right things as a result of their clinic visit.
Patients who felt worse:
Those respondents who indicated that they felt worse were on average 64.1 years old. Seven respondents were male 16 were female it had been, on average, 2.0 years since their last clinic visit. Those who felt worse indicated that they felt worse in nine and the same in 13 of the 22 health indicators. They characterized themselves as feeling worse because of decreased energy, increased weakness, poor mobility, increasing fatigue, more pain, less stamina, worse sleep, poorer concentration and greater anxiety. It was the perception of these polio survivors that they felt worse because their disease or condition had progressed (76 percent), felt older (48 percent), felt more stress (28 percent), and developed other illnesses (24 percent). No one blamed the clinic visit for the fact that they felt worse.
However, this group was troubling. Pain was high on the list of health indicators. In my experience of collecting statistics in the polio clinic since 1981, musculoskeletal pain has become the most common complaint (79 percent of all polio survivors).
Conclusions: The importance of this study is that it is based on the perceptions of polio survivors themselves. What did we conclude? We felt gratified that we were doing a good job, helping most of the polio survivors who came to the polio clinic to feel better, or at least not lose ground. We will continue to emphasize energy conservation, teach exercise parameters, advocate early retirement or work simplification, provide emotional reassurance, encourage use of power wheelchairs and motorized scooters and adaptive equipment, emphasize joint conservation and recommend medications.
In addition, we are trying to better individualize pain management. And. as a result of the complaints of weakness, increased frequency of falls, fatigue, loss of stamina and decreased energy, we have reexamined the use of Mestinon (pyridostigmine) for polio survivors with profound fatigue and upper-extremity and/or bulbar weakness. We have tried it on seven patients; five continue without side effects and feel an improvement in their fatiguability (susceptibility to fatigue).
Stanley K. Yamell, MD
Saint Mary’s Medical Center, San Francisco, California
Stanley K. Yarnell, MD, has been involved with the disability community professionally and personally for 20 years. He founded the first post-polio clinic in northern California in 1981 in Saint Mary’s Medical Center and promoted the establishment of post-polio self-help groups throughout the area. He is a well-known presenter at post-polio conferences throughout the world and was involved with the early care and management of spinal cord injured patients in his private practice.
Dr.Yarnell’s contact with the disability community was not limited to his role as treating physician. He has been legally blind due to recurrent optic neuritis since 1978 and serves on several disability-related boards.
Non-Fatiguing General Conditioning Exercise Program (The 20% Rule)
Stanley K. Yarnell, MD, Saint Mary’s Medical Center, San Francisco, California
Originally printed in Polio Network News, Summer 1991, Vol. 7, No. 3