My Executive Secretary

I lost my executive secretary. I don't know what happened to her. I think she disappeared several months ago, but I'm not sure. It took me a long time to even realize she was gone.

She was an excellent secretary. She could keep me up to date on the conversation going on in the Parkinson's Chat Room, proof-read my newest blog story for typos, help me come up with words that rhymed for my songs, pay all the bills, keep my checkbook balanced, give me the proper answer to the question Wonderful Husband just asked, remind me to take my pills and wash my cereal bowl, and she could do it all at the same time. She had been with me all my life. She was the one who got me those straight A's in school and the near perfect SAT scores. She took care of the serious stuff, so that I could have fun. She was a part of me.

YumaBev being silly

My cereal bowl was the first clue that something was wrong. When I would get it out of the cabinet in the morning, it wasn't where it should be. One day, Wonderful Husband asked me about the Chat Room and I realized I hadn't been in there in weeks. The bills were still being paid, but they weren't being filed away. Her usually tidy desk was a mess. It was around this time that I realized she was gone.

I tried to figure out where she went, and why. I think she left because of the working conditions. I think she got tired of all the drugs that were flowing through her work station and just decided to sneak out one day. I wasn't sure what to do. I needed her. I was not handling her disappearance well. I decided to see if I could find her and convince her to return. 

I asked my neurologist if we could do anything about the drug problem. I was convinced it was the increase of a certain drug I was taking that caused her to leave. By my best guess, she left shortly after my dosing of this drug doubled. He suggested DBS, the Deep Brain Stimulation surgery. He said it should decrease the drug situation, but didn't know if my executive secretary would return. 

I wasn't sure I was ready for brain surgery, so he adjusted my medications instead. After a few weeks, I started to see a difference. The cereal bowl was back in it's place. (It turns out that I was leaving it on the counter and Wonderful Husband was washing it and putting it away). The pile of paid bills was being filed. I found time to tackle a sewing project and found that I could chat at the same time. My executive secretary was back! She wasn't as good as she once was, but after all, what could I expect? She has Parkinson's, too, and all those drugs I take, go right across her desk.

She and I had a long talk one day and we decided to consider the DBS surgery. I am taking medicine every three hours from the time I wake up until the time I go to bed and she thinks that is excessive. We sat down and had a long discussion with Wonderful Husband, we explained, as best we could, what had been going on. The idea of brain surgery scares the daylights out of him. I can't say I'm exactly thrilled about the prospect, but I want to keep my executive secretary happy. I need her. 

My Executive Secretary

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Pharmacology of Parkinson's Disease

Reading all the fine print on those fact sheets that come with Parkinson's disease medications is confusing and boring, so I decided to use humor to try to explain it.  I got the idea of using farm references by the phonetic pronunciation of Pharmacology (FARM-a-college-ee).


Parkinson's disease is caused when certain neurons in our brain die and quit producing dopamine.  Low dopamine levels cause the signals from our brain to our muscles to get scrambled and produces the erratic movements. Okay, easy enough, just give us dopamine.  The solution sounds simple, but there is a catch: our bodies are very protective of what it lets in the barn (brain) and dopamine can't even get on the farm.  

Dopamine - stay out!!!

The scientists developed levodopa which can get on the farm, but by itself, levodopa causes intense nausea and vomiting and turns into dopamine and still can't get in the barn (brain).  The scientists found that by adding carbidopa to the levodopa, they could prevent it from becoming dopamine and quell the nausea.  Carbidopa is like a Judas Goat, it leads the levodopa past the guard dogs and right into the barn (brain). The combination of carbi/levodopa is called Sinemet.

Sneaks the dopamine in

The problem with Sinemet is that our bodies try to get foreign items out of our bloodstream.  It takes about 45 - 75 minutes from mouth to blood stream and then our efficient blood cleansing organs get rid of it about an hour later, so not much makes it into the barn (3% according to the experts).


The scientists went back to work and found out that if they added another drug called entacapone (Comtan), they could keep the Sinemet in our bloodstream longer and therefore more can be herded in to the barn known as your brain.  The brand name combination of Sinemet and Comtan is called Stalevo.

Herding more into the barn

Comtan has a wonderful side effect of making your urine turn bright yellow, orange or even brown.  This has a tendency to freak out the lab techs when they ask you to pee in a cup.  It is my own personal observation that this yellow stain also creeps into your saliva and perspiration and I am pretty sure that it is staining my teeth as well (just call me mellow yellow).


There is another class of drugs called dopamine agonists. These drugs aren't designed to replace the missing dopamine, they are designed to make the receptors that use dopamine work better without it. It's kind of like dangling a carrot in front of a donkey.  

Agonists act like a carrot and can cause you to act like a donkey

There are 2 main agonists: Ropinirole and pramipexole, known under the brand names of Requip and Mirapex. These drugs do such a good job of stimulating the receptors that they can cause dangerous obsessive or compulsive behaviors such as gambling, uncontrollable shopping or risky sexual activity.  IF you are taking an agonist, you need to be aware of these potentially life altering side effects and find someone you can trust to monitor you. On the up side, agonist's have also been tied to increased creativity.  People start writing poetry or take up painting when they had no interest prior.


Rasagiline (Azilect) and selegiline (Eldepryl) are other drugs that are used in Parkinson's and are in a class of medications called monoamine oxidase (MAO) type B inhibitors.  They work by increasing the amounts of certain natural substances in the brain and act similar to the agonists.  They are often prescribed to recently diagnosed Parkies in an attempt to delay prescribing the Sinemet.

There are many other drugs used to either treat the symptoms of Parkinson's or the side effects of the drugs we take to relieve our symptoms.  

Treatment of Parkinson's consists of easing our symptoms only.  None of the currently available medications will stop the progression or cure it.  Over time, Sinemet causes unpleasant side effects (Parkinson's Drugs Side Effects) and becomes less effective, requiring us to take higher and higher doses, so Doctor's try to reduce the amount of it we take or delay its usage.

The reason Sinemet loses its effectiveness is the brain needs healthy dopamine producing neurons to convert the levodopa into dopamine, and, as the disease progresses, there are less and less neurons to do the converting.


I wrote a song about Sinemet, well, just the lyrics, the music is borrowed.  Have a listen:

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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Okay, Seriously...What is Parkinson's Disease?

Parkinson's disease is caused by the death of little neurons in an area of your brain called the substantia nigra (black substance), which is somewhere above the spinal cord. These little gray cells, as Hercule Poirot would call them, make a chemical called dopamine.

Dopamine is the stuff that helps your brain send messages to movement related parts of your body. As these neurons die off, less dopamine is produced and the messages get garbled. These garbled messages cause a myriad of symptoms, ranging from twitching pinkie fingers to becoming stiff and rigid like a mummy. Symptoms can change from hour to hour and day to day, but progressively becoming worse as more neurons go to gray cell heaven.

Each and every Parky (nickname for people with Parkinson's) can have different symptoms. Most start with just symptoms on one side of their bodies. Mine was my right hand, bad for a right handed person. If I had been a lefty, I might not have even noticed for awhile. Most notice a shaking or tremor as the first sign, others never get tremors and just feel like their limbs got filled with concrete when they weren't looking, others have dexterity problems. My first symptom was the inability to double click my computer mouse with my right index finger, even though I had done it the day before with no problems. These discrepancies can make diagnosis very difficult.  

There is no test for Parkinson's. Rule out everything else and then make an educated guess.  In my case, it took eight years before someone guessed right.  Another YOPD (Young person with Parkinson's) I met online, got the right guess the day after she noticed something amiss. The average for us Youngsters seems to be a couple of years. The Doctors are looking for other things, not an "old persons" disease and sometimes tell us that it's all in our head. That part they are actually right about. It is all in our head, it's just not imagined.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

I am Special

I AM SPECIAL and I have a sense of humor.  I have Young Onset Parkinson's Disease (YOPD), also known as early onset. What does Young Onset mean, exactly? It means that instead of waiting until my late sixties to get this disease, I was precocious and got it in my thirties. This makes me special, just like Michael J. Fox, but without his bank balance. It also means I didn't have to wait until 62 to collect Social Security or 65 to get on Medicare. I get both now, thanks to Parkinson's. Of course, the check I get is no where near what I made when I could still work, but I don't have to commute or wear heels!  

I may be special, but I am not rare. For awhile, I thought Mr. Fox and I were the only Young Onsets out there. I was wrong. I found a chat room for us Parkies (an affectionate term we call ourselves) and have since found quite a few other precocious people out there, some in their early twenties.

A sense of humor is a requirement when you have Parkinson's. Not only is it a good idea to be able to laugh at your predicament, but laughter helps your brain produce more dopamine, which is the "stuff" we are lacking and causes all of our weird symptoms. 

I was never, what I would call, normal. I was always small for my age, and a couple years ahead of the rest of the class in school. 

My Mother used to say I had "an old soul". Maybe it's that "old soul" that got the Parkinson's.  

Darn! Maybe I am not special after all.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!