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.

We Did It, Nuerology Now

We Did it! We raised over $5000!

Special thanks to Todd Robbins and Michael Chaut for performing! They were phenomenal! They are available for private, corporate and family events. Alternatively, see them any Monday night at Monday Night Magic, the world's longest running magic show.

Thanks to all my wonderful students, my wife Kate and Dr. Jori Fleisher. To the SU staff and Steve Aiello, THANK YOU!

Amy Jacobus thanks for the flowers and to Colin and Rob for being our two biggest donors! Many names have been left out on purpose and/or by request in order to protect the fabulous!

To everyone who said such nice things about me, the checks are in the mail!

By the way, this Sunday 2/12/17, I am turning 50!

Neurology Now
So a few you months back I did interview with the Nuerology Now.  Click on the link above to see how they summrrized a half an hour interview into about two sentences. The question is, "Are they two good sentences?" You be the judge. See number 7.

The Website Is Live and More!

The Website Is Live!

 TheWebsite is Live for the February 8th Charrity Dinner. 

 

We are asking everyone to give something no matter how small the amount. We are also asking you to get two friends to give and that all you of post the above artwork and link on Facebook. 

Please do not stop there, tweet it, email it and talk about it. This charity is working hard to  provide in-home doctors visits as well as visits by companions and social workers. Help to keep Parkinson's patients in their own homes where they belong!

Watch this video please.
http://youtu.be/PCviRh0SZFE

Biogen!
https://www.michaeljfox.org/foundation/news-detail.php?two-more-alpha-synuclein-drugs-in-clinical-trials

Biogen and two other companies are working on Alpha-synuclein blockers. The hope is to freeze Parkinson's disease in its tracks!  I  sat in on meeting at the Parkinson's Disease Foundation, along with some other patients to give feedback to Biogen on their upcoming phase 3 trial. I cannot explain any further due to the confidentiality agreement I signed, but you can read about it at the link above.

On a personal note…
I am with a group of phenomenal Queens College students  working on the Horseboy Ranch  in Austin Texas. It is an organization that provides equine therapy to children on the spectrum. It is freezing here, but we are all in good spirits.

...you are, you are the future And the future looks good...

The Future
We are all concerned about the future of our country. Our 5 year old son cried when he heard the results of the election. We told him that we would protect him, we told him that we needed him to love and to shine his light more than ever before. Every day, I tell him that Trump is not the future of our country, he is!  And I tell him the future looks bright! I tell the college students that I work with the same thing but I add, "He won't make it a year without an impeachable offense……" Aaron Sorkin

At about 5:55am Thursday morning a colleague informed me that the Republicans and Democrats have ignored blue-collar white Americans for far too long and this is the main reason for our current president elect. I guess he is right, but no one wants to tell blue-collar white Americans the truth. The truth is good blue-collar jobs are disappearing and never coming back, family farming is dead and factory farming is here. Send your children to college and pray they work hard and make something of their lives. Pray that each of us live a life not measured in dollars.

The Future of Treatment
I almost forgot that this was a blog about PD! For those of you that do not know, I am a PAIR or a Parkinson's Advocates in Research. Among the many things that PAIRs do is give feedback on study design. 

On Thursday, a group of us spent 6 hours giving feedback to a pharmaceutical company on a study protocol. We all signed nondisclosure agreements, so I cannot divulge much, but the treatment is designed to STOP the progression of the disease! For people with a degenerative disease, PAIRs are very upbeat, but on Thursday, those of us at the meeting were ecstatic!

It was just a protocol for a study trial, but the future looks good!

Woke up starin' at this, starin' at this empty room
Looked at thousand different pictures that your mother took of you
You see I had this crazy dream last night - this man, he talked to me
He told me everything that's good and bad about my history

But he said that you are, you are the future
He said that you are, you are the future
And the future looks good
The future looks good

Oh call me any time that every time you're losin' it
And tell me anyone and everyone who makes you feel like shit
Because you know anybody, everybody else can lie
But honey I won't see you with a, see you with a broken set of eyes

I swear that you are, you are the future
I swear that you are, you are the future
And the future looks good
Oh, yeah
The future looks good
Oh, yeah

The future looks good
Oh, yeah
The future looks good
Oh, yeah

You, you, you
You, you, you

Woke up starin' at this, starin' at this empty room
Looked at thousand different pictures that your mother took of you

We're On The Train to Bangkok...

We're On The Train to Bangkok
Aboard the Thailand Express
We'll Hit the Stops Along the Way
We Only stop for the Best...

So the Parkinson's Disease Foundation (PDF), merged with the National Parkinson's Foundation  (NPF) to become the Parkinson's Foundation. If you have been following this blog, then you know that I am a Parkinson's Advocates In Research (PAIR) with PDF.

On October 1, I volunteered at the Partners In Parkinson's event at the Jacob Javits Center and sat at the PDF table which was next to the NPF table. It was nice speaking with fellow patients and their family members about PDF.

As far as the rest of the day, I did not learn anything earth shattering. It was, however, comforting to hear my story echoed by others. In short, I was not the only one who was diagnosed with carpal tunnel and wasted time in physical therapy for problem that I did not have.

On November 9 and 10, I will join other patients at the PDF office and speak to representatives of a pharmaceutical company in order to advise them on an upcoming clinical trial.

Wow! This was my most boring post ever! Consider it to be merely an update

You may ask, "what is with the rush song?" Well, I guess that it is my way of conveying that I am on this trip with Parkinson's and along the way, I will stop wherever my doctor tells me to and try anything that might help to slow the progression of the disease. If she says so, I will try the nicotine patch, medical marijuana or anything else that just might help...

Coffe With Jori, Be a Suphero! & Sometimes in my bed at night...

Coffee With Jori

So, this past Sunday, I had coffee with my doctor to discuss how I could help with her research and my upcoming fundraiser.  If you are shaking your head with disbelief, yes, I had coffee with my doctor on Sunday!
  
We discussed her research project, an upcoming fundraiser (see more below) and a possible opportunity for me to speak on December 13 at the JCC.

An interesting part of our discussion was when Jori told me that young neurologists do not want to become movement disorder specialists and/or work with Parkinson's patients!  She explained that a young interns first experience with Parkinson's patients generally occurs in a room full of late stage patients over the age of 70. For a split second I was judgmental and then I remembered my first experience in the waiting room of the NYU Parkinson's Center. I saw those same elderly, late stage patients and prayed that would never be me.

If you are a doctor who is considering becoming a movement disorder specialist and working with Parkinson's patients, remember that while the elderly, late stage patients are the face of PD, so am I. People like me and our families need you.  So, if your first experience with Parkinson's patients is similar to the one described above, take a deep breath and imagine how we feel. Again, we need you!

Sometimes in my bed at night, I curse the dark and I pray for light. And sometimes, the light's no consolation...


Huey Lewis and the News

The above is a shout out to my brothers and sisters with PD. Anxiety and stress cause insomnia, which in turn, exacerbates your fatigue. While all of the above are symptoms of PD,  I find that it helps to tell myself that the anxiety is a symptom and not real. This is not an excuse for avoiding with real issues in your life, but it does give you permission to put them in perspective.

Community Advisory Board

Patients, caregivers and relatives:
Are you are interested in getting involved in a community advisory board that will shape research and practice which will help people with PD? An advisory board is forming for the project below and we need your input. Without the advice of patients and family members, doctors will never know exactly what the needs of those with PD are. To join the board please contact me jandrejack@gmail.com.

Parkinson's Disease (PD) is a debilitating and costly neurodegenerative condition that affects 1-2 million people annually in the US. As PD progresses, symptoms increase in number and severity, and many people become homebound, losing their access to care despite having the greatest need. In 2014, the Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center launched the Edmond J. Safra Interdisciplinary Home Visit Program to deliver patient-centered care to homebound individuals with advanced PD and related disorders. We bring a team of a Parkinson's-specialized neurologist, nurse, and social worker directly to our patients and caregivers on a quarterly basis, pushing past the clinic walls to meet our patients when and where they need us most.

We have conducted over 280 visits to nearly 100 people across New York City. Despite being one of the oldest and most disabled PD populations ever described, and despite the expected progression of PD over one year, participation in the Home Visit Program leads to stabilization and improvement of quality of life in this vulnerable population. We are actively engaged in improving the scope and reach of the Home Visit Program to create a model that could be replicated at other centers nationwide. Our hope for this program is to provide a safety net for hundreds of thousands of people struggling with PD.

 Fundraiser Now A Reality!

The above fundraising campaign will soon have a live link for those of you who wish to give!  Remember 100% of the proceeds will go to the Edmond J. Safra Interdisciplinary Home Visit Program.  Sponsors for this event include: The Committee for Disabled Students, The Student Union, Veterans Affairs, Chartwells, Magical Nights Inc. and Ace Tent & Party Rentals.