Postpolio syndrome—"We aren't dead yet"
1 School of Social Sciences, Cardiff University, Cardiff CF10 3WT
Alice is 58 years old and is married with two sons, both in their 20s. She works for several charities, is a magistrate, and is out most days and evenings. She fits in a gentle game of tennis every week, but cannot walk more than a mile, even on the level. This was not always the case. A few years ago, she was jogging at least three miles every day and playing squash several times a week. Gradually, she began to notice that jogging uphill became difficult. She tried to find more level routes. Climbing stairs became difficult, and her legs and back began to ache after exercise. This carried on for a couple of years. She realised that the aching was in three areas—her left arm, right leg, and back, the three places that had been most affected by polio when she was 12 years old. At that time, she had spent a month in hospital and then, after several years of taxing physiotherapy and exercises, she recovered completely, except for slight atrophy in one leg.
, http://www.100md.com
As she continued becoming weaker, she would suddenly find herself overwhelmed by exhaustion, which was relieved if she lay down for 15 minutes. She remembered an article about something called postpolio syndrome, which she had made a mental note of at the time but had thought nothing moreabout. Her general practitioner referred her to a neurologist, who said, "Nothing wrong with you." She mentioned postpolio syndrome, and he replied, "There's no such thing as postpolio syndrome."
, 百拇医药
Next, she saw a rheumatologist, who said, "Yes, well, you've obviously got a problem, but I don't know what it is."
She provided her general practitioner with some information about postpolio syndrome, but nothing came of it, and she has not been to see him since. "I was effectively dismissed," she said.
By this time she was having trouble getting up from a chair and was at her "lowest ebb." Her next attempt at finding help was to telephone the British Polio Fellowship, which she had belonged to as a child. She described her problems to a welfare officer and asked if she had heard any similar stories. The officer replied that she listened to the same story all day every day, and told Alice to pace her activities and learn to rest before the pain and fatigue set in.
, 百拇医药
The relief Alice felt from this one telephone call was tremendous. Having thought she needed to continue exercise to strengthen her muscles, she now stopped doing so much and found her muscles becoming stronger. She no longer had episodes of fatigue, as long as she rested a couple of times in the day. This acknowledgement of her symptoms and advice was all she had wanted from her doctor.
I interviewed Alice as part of my research for a PhD in medical sociology. She spoke in a gentle voice, softly laughing with surprise once or twice at the story she was telling. After the interview, I asked Alice if she had ever told anyone her story before, and she answered quietly, "No, never." She felt it had always been too difficult to explain, and she hadn't really wanted to. Even in 1958, when she had had polio, she felt it was something of a curiosity and a disease doctors knew little about. Because of the vaccine, the research into the complexities of polio that had accumulated in the 1940s and '50s had never been disseminated. Doctors expect weakness and visible atrophy in someone who has had polio, but not the muscle fatigue, pain, and fatigue that are also common. The knowledge that all cases of polio, including mild ones, involved wide-spread damage to the nervous system had been lost.1
, 百拇医药
In parting, Alice said to me, "If one doctor changes his mind about postpolio syndrome from your research, I will be happy. We aren't dead yet." Although Alice has sorted her life out now, I felt everything could have been made a little bit easier for her.
References
Howard RS. Poliomyelitis and the postpolio syndrome. BMJ 2005;300: 1314-8., 百拇医药(Ruth Bridgens, PhD candid)
Alice is 58 years old and is married with two sons, both in their 20s. She works for several charities, is a magistrate, and is out most days and evenings. She fits in a gentle game of tennis every week, but cannot walk more than a mile, even on the level. This was not always the case. A few years ago, she was jogging at least three miles every day and playing squash several times a week. Gradually, she began to notice that jogging uphill became difficult. She tried to find more level routes. Climbing stairs became difficult, and her legs and back began to ache after exercise. This carried on for a couple of years. She realised that the aching was in three areas—her left arm, right leg, and back, the three places that had been most affected by polio when she was 12 years old. At that time, she had spent a month in hospital and then, after several years of taxing physiotherapy and exercises, she recovered completely, except for slight atrophy in one leg.
, http://www.100md.com
As she continued becoming weaker, she would suddenly find herself overwhelmed by exhaustion, which was relieved if she lay down for 15 minutes. She remembered an article about something called postpolio syndrome, which she had made a mental note of at the time but had thought nothing moreabout. Her general practitioner referred her to a neurologist, who said, "Nothing wrong with you." She mentioned postpolio syndrome, and he replied, "There's no such thing as postpolio syndrome."
, 百拇医药
Next, she saw a rheumatologist, who said, "Yes, well, you've obviously got a problem, but I don't know what it is."
She provided her general practitioner with some information about postpolio syndrome, but nothing came of it, and she has not been to see him since. "I was effectively dismissed," she said.
By this time she was having trouble getting up from a chair and was at her "lowest ebb." Her next attempt at finding help was to telephone the British Polio Fellowship, which she had belonged to as a child. She described her problems to a welfare officer and asked if she had heard any similar stories. The officer replied that she listened to the same story all day every day, and told Alice to pace her activities and learn to rest before the pain and fatigue set in.
, 百拇医药
The relief Alice felt from this one telephone call was tremendous. Having thought she needed to continue exercise to strengthen her muscles, she now stopped doing so much and found her muscles becoming stronger. She no longer had episodes of fatigue, as long as she rested a couple of times in the day. This acknowledgement of her symptoms and advice was all she had wanted from her doctor.
I interviewed Alice as part of my research for a PhD in medical sociology. She spoke in a gentle voice, softly laughing with surprise once or twice at the story she was telling. After the interview, I asked Alice if she had ever told anyone her story before, and she answered quietly, "No, never." She felt it had always been too difficult to explain, and she hadn't really wanted to. Even in 1958, when she had had polio, she felt it was something of a curiosity and a disease doctors knew little about. Because of the vaccine, the research into the complexities of polio that had accumulated in the 1940s and '50s had never been disseminated. Doctors expect weakness and visible atrophy in someone who has had polio, but not the muscle fatigue, pain, and fatigue that are also common. The knowledge that all cases of polio, including mild ones, involved wide-spread damage to the nervous system had been lost.1
, 百拇医药
In parting, Alice said to me, "If one doctor changes his mind about postpolio syndrome from your research, I will be happy. We aren't dead yet." Although Alice has sorted her life out now, I felt everything could have been made a little bit easier for her.
References
Howard RS. Poliomyelitis and the postpolio syndrome. BMJ 2005;300: 1314-8., 百拇医药(Ruth Bridgens, PhD candid)