In 1967, before effective drugs (such as levodopa, Mirapex, or Comtan) became available for PD, people diagnosed with PD lived, on average, 6–15 years from diagnosis to death. Some people with PD fell and fractured their hip, pelvis, or spine and were confined to bed. Other patients became immobile and were also confined to bed. For these patients, death came due to the complications of being bedbound. For example:
1. Some patients developed difficulty swallowing and they gagged or choked on their food, even when fed carefully. Their food was then aspirated or swallowed into the lungs, causing pneumonia. The rigidity of PD-restricted movement of the chest wall muscles created difficulty in inhaling and exhaling deeply, which is essential for overcoming pneumonia.
As the pneumonia spread, the infection overwhelmed the body’s defenses despite the use of antibiotics. Breathing became labored, oxy-gen levels fell, and the patients died. Sometimes the infection spread from the lungs to the blood, heart, liver, and kidneys, causing patients to die of blood poisoning, known as sepsis.
2. Other patients who were not turned in bed every hour and did not have one-to-one skilled nursing care developed pressure sores on their buttocks and lower back. The sores often became infected and the patients died from the infection.
3. For some patients, just lying in bed with their legs rigid and unmoving caused them to develop blood clots in their legs. The clots broke apart and spread to the lungs, effectively shutting them down and making the patients unable to breathe. The introduction of effective medications, such as L-dopa, Comtan, Mirapex, Requip, and Neupro, has changed the dynamics of this disease. People diagnosed with PD now live on average 15–30 years from diagnosis to death.
The drugs postpone the day when people become confined to bed, and this, in turn, post-pones the complications of being bed-bound. Further-more, antibiotics have improved, special stockings can reduce blood clots from forming in the legs, and anti-coagulants (blood thinners) can reduce the chances of blood clots breaking apart and traveling to the lungs.
Do people die of PD? Technically not. But PD sets the body up for death. Whether patients die of PD, or from PD complications, they die. The remedy is research to find the cause of PD or slow its progression so patients can outlive its consequences. Many PD patients confronted with a disease that progresses feel helpless. They should not! They must not! There are 4 simple rules I try to teach patients:
1. “P” find a PHYSICIAN who understands PD, a physician to whom you can relate, who is concerned about you, and who is readily accessible. Parkinson disease is with you the rest of your life, and so is your physician.
2. “A” have a positive ATTITUDE. If you’re depressed and unable to cope, your depression will likely deepen. Parkinson will defeat you if you let it.
3. “R” REGULAR. Take your medication as pre-scribed and establish a regular routine for physical therapy. You may not be able to exercise your way out of PD, but if you don’t exercise, and exercise appropriately, PD will defeat you.
4. “K” KNOWLEDGE. Learn all you can about Parkinson disease. Initially it may overwhelm you, but knowledge is power and you need to know all you can about the disease with which you have been diagnosed.