Parkinsons TV is Live, Grant Approved, Parkinson's In The News

Parkinson's TV Is Live!
I was proud to be a guest on future episodes of this program! Special thanks to Dr Jori Fleisher for getting me involved.  I will update this blog as future episodes are released!  On a side note, Dr. Fleisher has a future in television, that is if she wants one.
 

Grant Approved!
 For those of you following the news about the study I was involved in our grant was approved!

Dear Dr. Bloem,
I would like to formally congratulate you on being awarded a Parkinson’s Foundation
Advancing Parkinson’s Treatments Award for your proposal, “Developmental of a
Virtual Case Manager for Patients with Parkinson's disease.”

I find it necessary to mention that my part in this study as Parkinson's Advocate In Research is a very small one.  I am, however, I am so pleased to help Dr Bloem and his team in anyway that I can.

 News

Parkinson’s News Today

With the help from the Parkinson’s Foundation and other sources, here are 11 facts about the disease most people don’t know.
Below are two:

How prevalent is it?
Approximately one million people have Parkinson’s disease in the U.S. and there are around 50,000 new cases diagnosed each year.

Parkinson’s is expensive. 
Treating patients with Parkinson’s disease costs the U.S. around $25 billion a year. The average patient will need $2,500 worth of medication each year and therapeutic surgery could cost up to $100,000. 

Pod Casts
The Parkinson’s Foundation recently launched its new podcast series, “Substantial Matters: Life and Science of Parkinson’s.” Listen to experts cover the latest in Parkinson's in these 15-minute episodes  http://prn.to/2vpG4i9 

If You Cannot Speak Sing!  
Singing as Therapy: Northern Arizona University’s Choir For People With Parkinson’s Disease

"We get together, and the only thing many of us have in common is music. They often come with very soft, muffled voices, with monotone speech, which is typical of this disorder, but when they sing, they let go and really project their voices, articulate clearly, and move their voices up and down the scale; it’s quite a transformation!"

Take it easy folks, take it easy....

On A Personal Note...
I am doing fine with the exception of one episode of DAWS  (dopamine agonist withdrawal symptoms). At a recent family event, I became clammy and needed to to leave and gets sick.  My apologies to anyone who noticed.  One half a tablet of Mirapex and I was back in the game. As of this Thursday,  I will be off of Mirapex all together. I have mixed feelings about this, however, because while the side effects were bad, the drug did what it was meant to do. I seem to be doing well on carbidopa levodopa, so stay tuned

Monster In A Box or Letter To My Newly Dagnosed Self.

As it gets closer to the second anniversary of my diagnosis,  I have begun to think a lot about Dr. Sonia Mathur's blog post "To My Newly Diagnosed Self..."  Sonia, your blog post meant a great deal to me.

So inspired by Soania and author Spalding Gray's film, "Monster In A Box,"  I put together this very rough video.  I know that I have posted this before, but the treatment of Parkinson's disease is one of the few areas of medicine in which doctors partner with their patients to come up with a treatment plan. It is also one of the few areas of medicine in which doctors, researchers and drug companies actively seek out patients for their input and opinions. In the next few months, for example, I will have two opportunities to work with recognized expert Dr Bas Bloem.  My point is, get involved it will make you feel better!

If you are a doctor, foundation, patient or researcher and think that this video will help, please use it and share it. If you are a pharmaceutical company, please email me so that I can send you a bill! I take payment in small unmarked bills, Azilect or carbidopa levodopa!

Magicians, please do not be overly critical, this idea came to me late last night and I put it together this  afternoon.

Special thanks once again to Dr. Jori Fliesher; Kate, my lovely wife and our son and everyone at the Parkinson's foundation.

 No pharmaceuticals were injured during the filming of this vlog.

 (Turn your Volume All The Way Up!) Ladies and gentlemen, I give you "Monster In A Box."

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