Tuesday, February 11, 2020

Humpty Dumpty Syndrome in Parkinson’s Disease


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.

In Humpty-Dumpty syndrome, pieces of our disease symptoms are referred out, but rarely is there anyone putting all the pieces back together again.

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

There are the obvious ones, 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 and treatment. At least all the kings horses and all the kings men tried to put Humpty-Dumpty back together again. Rarely is there a health care provider taking responsibility for putting us back together again. 

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.

2 comments:

  1. Living this with my dad right now. đź’”

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  2. So true! As a nurse, I would get so frustrated with doctors who make me pass messages between them rather than taking 30 seconds to call each other and discuss the patient's care. Sometimes, I would have to send numerous messages back and forth in just one shift. Ridiculous!

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