Recognizing the Unrecognizable
Throughout the 1940s and 1950s, polio emerged as a devastating epidemic that affected thousands in the United States alone. Once the second leading cause of death behind stroke, polio stood as an incurable, viral disease that caused severe pain, breathing difficulties, paralysis, and in many cases, death. The virus crippled children and adults for years until a vaccine finally became widely available in 1955. Although polio has been eradicated in the developed nations of the world, the tides have turned over the past 25 years as polio survivors have begun to experience a range of lingering side effects that significantly affect overall quality of life.
Causes of Post-Polio Syndrome
The polio virus was originally characterized in three stages, including acute illness, recovery period, and stable disability. In the 1980s, when polio survivors who were diagnosed at a young age began to experience pain, progressive weakness, and fatigue, experts identified a fourth stage of the disease commonly known as post-polio syndrome (PPS). More than half of all polio survivors are now developing the deteriorating side effects of PPS. Considered a progressive neuromuscular decompensation, PPS is surfacing in thousands of Americans, negatively affecting their ability to partake in life’s simplest pleasures.
A Difficult Journey
Navigating through life with PPS is undoubtedly difficult, as mobility is quickly lost and it becomes challenging to live a normal, regular life. The extreme bouts of pain and weakness that accompany the condition can hinder work, familial obligations, and the ability to enjoy hobbies and activities. As a result, many PPS patients become depressed and dormant, ultimately affecting those around them.
Unfortunately, there is no specific cure for post-polio syndrome, and the lack of adequate treatment most certainly leads to feelings of frustration and hopelessness among the afflicted. The lack of a cure is a result of the lack of knowledge surrounding post-polio syndrome. Because PPS demonstrates similar symptoms to other incurable chronic conditions including chronic fatigue syndrome (CFS) and fibromyalgia, physicians are often quick to misdiagnose or even dismiss PPS. Those diagnosed with PPS often remove themselves from their communities, their work, and even their families. As such, it’s particularly important for caregivers to educate themselves on both the physical and emotional side effects of the condition.
How to Help
A strong support base is critical for those living with post-polio syndrome as it is likely that among other positive effects, the chances the condition will be officially accepted by the medical community will vastly improve if caregivers acknowledge PPS and encourage their loved ones to speak out about it. Fortunately, there are an overwhelming number of PPS communities and support groups that have been established to address the growing concern of post-polio syndrome. These support groups convene regularly to discuss life’s challenges associated with PPS and ways in which individuals can move on and rebuild their lives.
The creation of these PPS support groups has garnered the attention of numerous physicians, who have taken a special interest in studying the transformation of the disease and utilizing unique treatments for individuals living with PPS. Over the last few years, specialty physicians, including doctors of osteopathy, acupuncturists, chiropractors and physical therapists, have treated PPS with alternative therapies that have served to create a pathway to a more active, fulfilling life for their patients.
Life is Possible
Through a recent increase in awareness and attention, post-polio syndrome has started gaining traction and validation within the medical community. And with recent advances in medicine and technology, breakthrough treatments that treat the debilitating side effects of the condition aren’t far away.
It takes a strong will to be a caregiver for an individual living with an illness. For caregivers of those with PPS, it is difficult to be the supportive backbone when all others have become skeptics and have dismissed PPS as a serious medical condition. As a result, these providers are encouraged to discuss the condition with their loved ones, and in turn, encourage them to have open communication lines with physicians, medical professionals, and fellow polio survivors.
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