The experience of having had poliomyelitis (infantile paralysis) is a very personal one. Having the acute illness can result in no hospitalization to isolation and months, even years, of rehabilitation. Memories of polio vary as well. Survivors who had polio as children may have no conscious memory of the illness or subsequent rehabilitation, whereas some survivors vividly remember the pain and paralysis of the acute infection and their medical treatments. The care differs from country to country, from decade to decade, and from rural communities to cities.
Poliomyelitis is caused by any of three serotypes of poliovirus. The major illness types include non-paralytic and paralytic poliomyelitis. The poliovirus damages motor nerve cells and, consequently, the muscles instructed by those nerves are temporarily or permanently paralyzed. Acute polio does not infect sensory nerves, so sensation is not affected. Paralytic poliomyelitis can be classified as spinal, bulbar or spino-bulbar. Bulbar is the most serious form of polio and involves the part of the brain dealing with the vital functions of respiration and swallowing.
The new problems facing your loved one are not caused primarily by the poliovirus, but are problems secondary to having polio. Polio survivors experiencing new symptoms have not been re-infected nor are they contagious. They need your understanding and support.
Post-Polio Health International recommends that all polio survivors have yearly medical examinations and that those who are experiencing any of the persistent new symptoms of weakness, pain, fatigue and breathing problems obtain a comprehensive neuromuscular examination. Some survivors are reluctant to seek medical attention. Reasons for avoiding a physician can include early memories of polio, a recent visit that was not helpful, belief that no physician today understands the late effects of polio, or an inaccessible office or examination table.
Your role as a family member may be to encourage an evaluation and to assist in implementing the treatment plan.
Polio survivors do not experience new problems in isolation. What affects them can affect you. You will be addressing, possibly for the first time, many issues:
- selecting specialized health professionals and new equipment;
- learning about access and disability laws;
- making choices in how to spend time, energy, and financial resources.
Additionally, long-standing roles may by necessity be challenged or changed.
Understanding and accepting all of the ramifications of the late effects of polio is not easy. No one can predict the future, but it is recommended that you and the polio survivor in your life attempt to approach the concerns as a team that includes health professionals.
Polio survivors can have feelings of guilt about being "a burden." Or, they may feel sadness for "the way things were." You may feel resentful of your new responsibilities. It is recommended that you address these issues as they arise. Everyone has different skills, methods and preferences in solving problems. Ascertaining and utilizing these skills can be very beneficial to maintaining a healthy relationship. Many relationships have benefited from an association with a support or self-help group or from family counseling.
Educating yourself about the many facets of the late effects of polio is the first step in determining your role in a management plan grounded in the commitment of your loved one to make lifestyle changes.