Saturday, March 7, 2020

Do You Have Plutonium in Your Medicine Bag?

I had Movie Night with my two granddaughters, Kyla and Aubrey. I picked the movie. They could stay up past bedtime to watch it.

We got into our PJ’s. I made a concession stand in the kitchen with “real movie popcorn,” loaded with butter, big cups for taking popcorn into our home theater (aka the TV room), juice boxes, and 2 movie-sized boxes of each candy; Junior Mints, Milk Duds, Swedish Fish, Malted Milk Balls and Nerds.

The movie was my pick because I cannot handle seeing any more movies with characters from video games. Ditto for princesses or in plastic spoons that come to life.

I chose “Back to The Future.” They’d love it!! The characters. The time travel. The love story. The 1950’s. The action. Most of all, I was excited to watch them see Michael J. Fox before he had Parkinson’s disease.

Since I’ve had Parkinson’s disease before I had grandchildren, they’ve never known me without my symptoms, I thought seeing the movie would give them an understanding that I wasn’t always like this, either.

What I learned that night is they can’t detach Michael J. Fox from his Parkinson’s anymore than they can detach me from mine. I’m just Grammie. And Michael J. Fox, logically, would have Parkinson’s in “Back To The Future.”

The following conversation took place at the end of the movie, which told me everything:

Aubrey, the younger sister, watching the final scene at the Clock Tower, where Doc is standing at the top of the tower in high winds as a lightning storm moves in, trying to plug in the two wires before the clock strikes, asks “Does he need to take his medicine?”

Kyla, the older sister, corrects her sister who clearly does not understand the plot: “Aubrey. That’s the boy’s doctor. The boy has Parkinson’s.”

With the DeLorean picking up speedy, Aubrey, referring to the Flux Capactor box, asks “Is that the Doctor’s medicine bag?”

Kyla: “No, Aubrey. I already told you, the boy had Parkinson’s. That’s the boy's medicine bag.”

Me, trying to explain the movie says:”That’s not a medicine bag at all.  That’s the Flux Capacitor. There’s Plutonium in the bag to make the car go so fast.”

Letting this thought sit for a moment, Aubrey asks, “Grammie, do you have Plutonium in your medicine bag?”

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.