Carbidopa/Levodopa: The Monster Under the Bed?

Carbidopa/Levodopa

The Monster Under the Bed?

For two years, I have tolerated Mirapex fairly well (depending on how you define fairly well). Now, I can no longer take the side effects and I am switching to Carbidopa/Levodapa.
Since my diagnosis, I have thought of Carbidopa/Levodapa like a child thinks of the monster under the bed. I did not look so that the monster could not get me. In my nightmares, this monster shook almost uncontrollably.

There was no monster of course, but in mind there was some sort of a bizarre fun house mirror that held a reflection of my future self with dyskinesias captive. In short, the fear was that Carbidopa/Levodapa would create the shaking monster.

 
Do I see people with dyskinesias this way? Of course not. I never, however, afford myself the same level of understanding (not really the right word) that I grant others. With, addiction, for example, I view others in recovery as heroic, but see myself as just another person who only overcame obstacles that I myself created. I tell myself, with as much sarcasm as I can muster, "Great JB, you fucked your life up and then you sorta fixed it. Way to go! Major accomplishment!"

OK, OK, back to the drugs. Are the fears of this shaking monster real? The answer is yes and no, or as my doctor puts it,    

"Do the risks (of Dyskensias with Carbidopa/Levodapa use) increase over time? Yes, but the risks don’t start to accumulate until someone has been on levodopa totaling at least 400mg daily, if not 600mg daily, for several years."

My dosage is luckily much smaller. So I will face this fear as I have faced all others, head on. OK, OK, head on after the requisite amount of whining!

Rare Spontaneous Moment of Clarity
The real monster, of course, is not some shaking future version of myself, but those aspect of my current personality that cause me to view myself with such disregard. Enough honesty for one post.

Rare Spontaneous Moment of Creativity
All of my future Halloween shows will now feature a new effect; The Monster In The Box!" Did it escape? Did it exist? Stay tuned!

In Related News:

Drug Reduces Dyskinesia, ‘Off' Times in People with Parkinson’s

A study in JAMA Neurology finds that an experimental extended-release version of the drug amantadine can reduce off-times in Parkinson’s. Foundation cited.

And Finally:

God Versus Guide

The Practice of Treating Parkinson's Patients

In my experience, in no other field of medicine are patients allowed to partner with their doctor to create a treatment plan. Bas could I be in your next skit? I am a Parkinson's Patient, but I do not play one on TV!

Parkinson's TV and More

On May, 9th, I was a guest on 3 episodes of Parkinson's TV with Bastiaan Bloem, Ray Dorsey and Jori Fleisher. These doctors are three of the most influential people in the Parkinson's community.

We discussed  medications, side effects, nutrition and occupational therapy. I was very honest and did not hold back about the depression and side effects.  When I told Kate she said, "...you cannot help anyone unless you're honest…" I am still a little worried about what reaction I will get it when the episodes go up on the www. 

Researchers who work with Patient Advocates In Research (PAIRs) have access to $10,000 grants from the Parkinson's Foundation. Bas has offered to allow me work with him and submitted the grant application.

A few days later, I was invited to A World Without Parkinson's which was held on June 1 at Convene in NYC and sponsored by the Parkinson's Foundation. Convene is a swank place with great food and coffee and each event participant gets his or her own iPad. With a click, the presentation you are watching is emailed to you!

Dave Iverson opened up the day by pointing out that there were no African Americans present and that there very few other minority groups represented. He also pointed out that from a socioeconomic perspective we were a privileged audience. A quick look around assured me that other than some interns and gradate students, I was one of the poorest people in the room.

The day was informative and hopeful, but at times a a bit over my head. When a photo from Parknson's TV flashed across the screens, Ray Dorsey introduced everyone in the pic including Jori and then Bastiaan Bloem gave me a shout out and asked me to waive.

Below are two memorable quotes from the day:

"Parkinson's is a disease of subtraction... ...you must add to your life. And hope addition is stronger than subtraction.." 

Dave Iverson

"In the last 25 years the # of people with Parkinson's disease has doubled. If Parkinson's disease was contagious we would have an epidemic."

Ray Dorsey 

End the silence

A special thanks goes out to Karlin from the foundation for inviting me. 

I am selfishly very sad that Jori, my doctor, is returning  to Chicago.  She has spent more time with me than all the other doctors I have seen over the course of my lifetime combined. She treats me as a partner in the effort to control my disease. She has also introduced me to many people in the Parkinson's Community. This is a community in which I am starting to feel at home, which is an odd feeling for a man who has been an outsider for most of his life. Thank you Jori.

Jori, your child should play with his cousins and be spoiled by his grandparents. There is nothing more important than family.  Enjoy Chicago!

A final word about this blog: It is honest and therefore, it may not be the best method of promoting foundations, companies and individuals. If you would like your information omitted, please let me know. I may write about my depression or my most recent battle with fatigue, which is causing me to fall asleep in public and while I have reached a place of acceptance, these issues may be embarrassing to you. If so, you know how to reach me.

For the foreseeable future, however, I am going to be honest, because as Kate said, "...you cannot help anyone unless you're honest…" I love that woman.