Tuesday, March 3, 2020

Humpty-Dumpty Syndrome



Most all patients with Parkinson’s disease will develop Humpty-Dumpty syndrome. It is a syndrome we get from our doctors. Our doctors get it from our health care system. It may be a silly name, but it’s a serious condition.


Those of us with Parkinson's disease know how many medical problems come with the disease.

There are the obvious, visible ones that make our movement abnormal, like tremor, rigidity, slow movement and postural instability.

There are problems with functions that should happen automatically, but don’t, like: blinking, smelling, vision, swallowing, digesting, eliminating, sleeping, walking, and balancing, to name a few.

There are problems that come from side effects/interaction of medications we take fo treat these symptoms. Often the side efffects are the same as the symptoms they treat, like: nausea, tremor, shaking, muscle spasm, loss of coordination, dizziness, confusion, hallucinations, excessive sweating  extreme changes in blood pressure, increased heart rate, serotonin syndrome, which in severe cases can cause coma or death.

When you have this many problems, you see a whole lot of specialists. Like Humpty Dumpty, we get broken into pieces, each sent out to a different specialist for diagnosis. No one puts us back together again. At least ALL the King's horses ALL the king's men gave it a good try.

The job of putting us back to together again usually rests on our shoulders. Most of us are not qualified for the job. We may not be trained in medicine. If our specialists don't talk to each other, we try to pass the messages along for them. We make very poor messengers, having problems with memory, cognition and communication.

The only antidote I know of to Humpty-Dumpty syndrome is to practice relentless self advocacy — first in finding a doctor who will oversee your care, who will work together with you as a team and who responds quickly to your calls when you are trying to put your pieces back together. Secondly, to keep looking for answers and solutions. When you hit a dead end, back up and take another pathway. Lastly and most importantly,  talk to other patients, because until there’s a cure, there’s a community.

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