OVERVIEW AND FACTS
Post-Polio Syndrome or PPS is a condition that affects polio survivors sometimes many years after having polio. Other common names for the disease are:
- Polio, Late Effects
- Post-Polio Sequelae
- Post-Poliomyelitis syndrome
- Post-Polio Muscular Atrophy
- We will be using the term Post-Polio Syndrome or PPS in this discussion.
What is Polio?
Polio (or poliomyelitis) is a disease that is rarely in today’s news but was a major threat until the polio vaccine was first introduced in 1955. That vaccine has eradicated polio from the United States. However, the people that had polio are still at risk and often suffering from Post-Polio Syndrome or PPS.
Between the late 1940s and early 1950s, polio was one of the most feared diseases of the twentieth century. Polio crippled around 35,000 people each year in the United States alone. The disease was still present in other counties for many years, but even then was decreased by more than 99 percent since 1988. There were just over 1,300 cases reported in 2010.
Post-Polio Syndrome can only develop in polio survivors and cannot be spread to another person, but considering the amount of people affected in the 1940s and 1950s, that can still be real threat to a large group of people. Researchers estimate that PPS affects 25 to 40 percent of polio survivors. Studies show that there are currently about 1 million polio survivors in the U.S., so the potential for PPS is large.
SYMPTOMS AND TYPES
Polio survivors may experience different symptoms of PPS. While Post-Polio Syndrome is rarely life-threatening, it can interfere with an individual’s ability to function.
The most common symptoms include slowly progressive muscle weakness in the areas that were previously affected by the polio infection.
Other common symptoms include:
- Both generalized and muscular fatigue
- Muscle atrophy or a gradual decrease in the size of muscles
- Pain from joint degeneration
- Trouble walking
- Sensitivity to cold
- Increasing skeletal deformities such as curvature of the spine
- Respiratory muscle weakness which affects breathing while awake and asleep
- Weakness in swallowing muscles can lead more aspiration of food and liquids into the lungs which can lead to pneumonia
Different people experience different symptoms at many levels from minor symptoms to visible muscle weakness and atrophy. The severity the PPS greatly depends on the degree of polio the person initially had and recovery from the initial disease. People who had more minimal symptoms from the original polio are more likely to experience milder PPS symptoms and a person who was more affected by the polio virus many have more severe PPS symptoms.
DIAGNOSIS
While the various symptoms described earlier may be the first and best indicators of PPS, diagnosing PPS requires clinical information. Physicians normally only diagnose PPS after they complete a comprehensive medical history and physical examination. Part of this process includes ruling out other disorders that could explain the symptoms the person is having. It is very important to find a physician trained in neuromuscular disorders.
PPS is not always easy to diagnose. There are other medical conditions that may need to be considered including depression, shoulder osteoarthritis, chronic rotator cuff tear and progressive scoliosis causing breathing insufficiency can all be wrongly diagnosed as PPS.
TREATMENT AND CARE
Unfortunately, there are currently no effective medications or medical treatments to slow or stop Post-Polio Syndrome. There are a number of studies that show how non-fatiguing exercises may improve muscle strength and reduce tiredness to improve quality of life.
Some treatments include:
- The use of steroid prednisone, but the mild improvements may be outweighed by negative side effects
- Intravenous immunoglobulin may reduce pain and increase quality of life
- The anticonvulsant drug lamotrigine has shown modest positive effects, but more studies need to be done
- Specific and supervised exercises are highly encouraged to treat PPS. Doctors warn that any exercise that causes additional weakness, excessive fatigue, or unduly prolonged recovery time to the person should be stopped and can do more harm than good
- People with PPS are encouraged to use mobility aids (walkers, canes and wheelchairs) and ventilation equipment (portable oxygen and CPAP machines) to increase comfort and reduce fatigue
- Experts recommend changing daily activities to prevent or avoid rapid muscle tiring and total body exhaustion. This may be drastic to people who are used to being very physically active
Education and support are also important in the fight against PPS. Managing PPS can involve lifestyle changes that can reduce symptoms, fatigue and exhaustion. Support groups, post-polio group participation groups and counseling may help both the individuals and families adjust to this disease.
LIVING YOUR LIFE
It is important to remember that even if you had polio in the past, there is no guarantee that you will have PPS. While PPS affects 25 to 40 percent of polio survivors, that means that 60 to 75 percent are not affected.
Getting a proper diagnosis is an important first step. Find experts in neuromuscular disorders. Remember that there may be several other reasons and diagnoses for the symptoms you may be experiencing.
While PPS may limit parts of your life and cause changes in lifestyle and everyday activities, it is not fatal. Utilize the resources you have including support, exercise, home medical equipment and devices and asking or even hiring help for certain tasks may be the best things you can do.
ASSISTANCE AND COMFORT
If you or someone you care about is living with PPS, we encourage you to learn a much about the disease as possible and seek help when you need it. There is more information available from the two groups below. You can click on the link below, write or call them to receive more information.
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
POST-POLIO
4207 Lindell Blvd. #110
St. Louis, MO 63108-2930
info@post-polio.org
Tel: 314-534-0475
Fax: 314-534-5070
MARCH OF DIMES
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-997-4488 888-MODIMES (663-4637)
Fax: 914-428-8203