What is PPS?
PPS is the acronym for Post Polio Syndrome.
If you had polio you could be experiencing PPS.
What is polio?
Polio (Infantile paralysis) is caused by a virus, which enters the body through the digestive system. In serious cases the virus makes it's way into the nervous system infecting the spinal column and parts of the brain. Damage to the motor units (anterior horn cells, axon and axon sprouts) causes paralysis. Damage to the brain stem can cause swallowing and breathing difficulty.
Following the initial infection (usually ten to fourteen days) limited recovery is the result of the surviving anterior horn cells sprouting new "wires" to feed signals from the brain to the orphaned muscle cells.
What is Post Polio Syndrome?
The current consensus is that PPS is the result of years of overworking the surviving horn cells and the limited number of muscles they serve. On the average, each motor unit has to work two and one half times harder to equal the effort of a normal unit. After twenty or forty years they begin to tire of the effort and loose their ability to recover. These muscle cells become orphaned again and the remaining working muscles become easily overworked.
You are most likely to have PPS if you were paralyzed or hospitalized with polio, however, you could have PPS and not even be aware that you had polio.
What are the symptoms of PPS?
Symptoms may include:
- Unaccustomed fatigue.
- New weakness in muscles (even those not thought to be affected by polio).
- Muscle and/or joint pain.
- Muscle twitches
- Sleeping problems
- Breathing difficulty
- Swallowing problems
- Decreasing stamina
- Intolerance to cold temperatures
- Irritability, anxiety and depression
How do you know you have it?
PPS can progress slowly over many years, or emotional or physical trauma can cause symptoms to show up suddenly.
There is no clinical test to clearly diagnose PPS, so other causes must be excluded. In other words, if you had polio and are having new problems that can't be connected to other diseases or conditions, you probably have PPS.
The medical community is just starting to recognize PPS and misdiagnosis is still common. There are, however, several clinics around the country that specialize in the diagnosis and treatment of PPS.
What can you do about it?
Although nerve regeneration research is progressing at a rapid pace, there is currently no cure for PPS. There are, however, ways to improve the quality of life and help preserve as much as possible.
- Reverse your thinking
You "overcame" the affect polio by trying harder, ignoring the pain, and refusing to accept yourself as handicapped. It's time to relax, react to pain by resting, and concentrate on your abilities.
- Early detection and treatment
The sooner you recognize the problem and take corrective action, the more ability you preserve.
- Lifestyle modification
This may mean reducing your workload or even retiring from work. The Social Security system is becoming more aware of PPS and many polio survivors are now receiving disability benefits.
- Ask for help
Most polio survivors are self-reliant. Now we need help. Remember, the less you do the more abilities you preserve.
- Re- learn how to do everyday things.
Reduce reaching by keeping elbows close to your body. Don't lift heavy objects. Rest often.
- Bracing and mobility aids
Weaker muscles need extra support particularly the larger leg muscles, but canes or other walking aids can transfer overuse to the arms and shoulders. Leg braces, scooters and power chairs are helpful. Overnight ventilation is like braces for you breathing muscles.
- Diet and medication
A diet high in protein is recommended. Some prescription drugs and over the counter dietary supplements are shown to be helpful to some polio survivors. Many doctors who understand post polio recommend non-steroidal anti-inflamatories.
- Use regular rest periods to manage pain
Pain medications mask the problem, resulting in accelerated loss of motor neurons and muscle cells. Joints can also suffer rapid degeneration when pain is ignored or medicated.
Limited stretching and water exercises are generally recommended. Reduce or eliminate activities that cause increased pain or muscle twitching.
- Stay warm
- Reduce stress
- Learn all you can about PPS
- Get involved in support groups, newsletters and the Internet.
- Get someone close to you involved
- The sleep/breathing connection is the most insidious, deadly and misunderstood problem for approximately half of PPS folks. Seek treatment from a PPS qualified source. Overnight bilevel S/T breathing assistance is the accepted treatment.
It's important to have someone who believes in you. Your doctor and your family must learn that you can't overcome the pain and/or weakness by trying harder.