...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.

I'm No Angel & An Attitude of Gratititude

Today's post has three parts,  I'm No Angel, An Attitude of Gratitude & An Update

Part I
Recently, when discussing this blog with my wife, Kate,  she said,

" You don't have to make me out to be such an angel…"

" You are to me," I responded.

 Then she said, "but we argue.."

To which I said, " Every couple I know that is truly in love argues. It is healthy. When couples do not argue they generally split up.  One day, one of them decides that they have had enough and just leaves. Arguing from time to time helps us to avoid that."

To which she agreed.

This reminded me of one of my favorite songs & the fact that we all have a past and although many of you do not have one as checkered as mine,  I am sure that I could find a few skeletons in anyone's closet.

 And so I end the first part of this blog post with one of my favorite songs and least favorite videos!


Part II

One of my better qualities is that I am truly grateful for anything that anyone has ever done for me. Last week, however, I began to wonder if I had been doing a good job of expressing this. Therefore, I have decided to utilize this blog to thank people from time to time.

Amy Jacobus
In a very dark period of my life, I found myself  without a job, severance package spent and unemployment benefits gone. Just when I thought that I would not be able to pay my rent, Amy Jacobus lent me a hand. First, she asked me to help her out with a gig decorating Wynton Marsalis' apartment for Christmas. While I got the sense that she really did not need my help, I certainly needed the money. Then, she introduced me to some friends from a company that gave me a job with benefits.

I am not certain that I was even consciously aware of how close I was to being homeless. With the promise of a new job, however, I asked the landlord to accept the rent late, borrowed some money and I was on my feet again.

Thank you Amy!

Part III

For those of you who are interested, below is a photograph from my PDF Research Advocate training with doctors, PDF employees, researchers and fellow advocates.

One Year

"...every breath that you take is a miracle..."

Switchfoot

So, a year has gone by since the diagnosis. Many things have happened since then. The drugs
are working, but so are the side effects. My gate is pretty good, my right arm is not so stiff, and
my toes no longer curl under. I have done a biopsy, a genetic study, completed more online
questionnaires than I can count and I am currently taking part in the Fox Insight study.

My parents both became octogenarians! My mom's stage two cancer diagnosis quickly changed
to stage four, but surgery and Ibrance, the newest miracle drug, will keep my mom going for
many years to come. Avoiding traditional chemo and living for many more years is good news,
but my father is still very depressed. I get, I really do, my mom is the love of his life and the best
thing that ever happened to him and this was a close call.

Ocean, now 5, is becoming quite the soccer player and currently fascinated with masks, dogs,
designing his own games and mazes and with origami. Kate has been completely supportive and
really just wonderful. Not only does she have to put up with me and my tangential roller coaster
train of thought, she now has to deal with me on PD medication. In general, I am surrounded by
understanding family and friends, so I consider myself lucky.


Last week I spent three days training to be a Research Advocate with the Parkinson's DiseaseFoundation (PDF). In an NJ hotel and conference center, I joined patients, spouses, medical
doctors an researchers to learn about PD, advances in treatment and how to critically review
published research. My doctor spoke about her project to bring care and kindness to shut in
New Yorkers with PD. I was reminded by more than a few people present how lucky I was to
have such a great doctor. My fellow parkys and I had a range of different symptoms in varying degrees of severity. I felt a little guilty when answering yes to questions like,

"Are you still working?" or "Are you driving your own car?"

Ultimately, I was reminded that I have nothing to complain about.

Back at work, a colleague from the central office pointed out that I was not just the advisor the
the Committee for Disabled Students, I was also a member. I quickly pointed out that PD was
only a disability when it became debilitating and that I was not there yet and may never be.
Please do not misunderstand me, I am not embarrassed to have Parkinson's nor would I be
ashamed to be disabled, I just cannot put on the suffering of others like a coat. I may end up
with a cane in 20 years and I do not look forward to having another accessory to match with my
bow tie, pocket square, lapel flower and cuff links!.

Ultimately, a year with PD has taught me that I am lucky. My symptoms are mild and I have
loving and supportive family and friends. I have a good career and an intact sense of humor. I
have a life to live and PD is just part of it. Now please excuse me while I take a hand full of pills
and swim in a pond! I will leave you with something a fellow parky recently said to me,

"Any morning you open your eyes and see the ceiling is a good morning!"

"The wound is where the light shines through"

Switchfoot

Good News, Bad News

Good News:
My medication is really working effectively. Since being diagnosed, I went from a 16 on the Parkinson's scale to about 12. People who know that I have Parkinson's have commented on  the improvement in my gate and the lack of rigidity in my right arm.

Bad News:
The side effects have not diminished. These are very personal side effects, so if you are a friend (and really bored) call me and ask. For those that keep asking: No, it is not E.D.!
 
Regardless of the drugs, exercises and stretching, my lower back still hurts. The hardest part of my day is often getting out of the car in the morning. Note to self: "your next car will not be a Honda Civic!" My good friend Sam informs me that this is old-age, but somehow, I can tell that it is the Parkinson's.

Bad News:
On April 20, my soon to be eighty-year-old mother had a mastectomy. while the doctor informed my mother and father that she did not think it was in the lymph nodes, after 3 1/2 hours of surgery, she did not need to come out to tell us it was.

Good News:
At her last visit, the doctor informed her that she is healing very well.  She will definitely need radiation and assorted pills, but after the meeting with the oncologist, she will have to decide if she wants to undergo chemotherapy. My mother and father have requested that I attend the meeting with the oncologist and my younger brother wants to go as well. If chemotherapy is recommended, the question that my mother will have to wrestle with is "How long can I live without it?" Having this question answered, may make it easier to decide.

In the category of good news, my mother has had great life so far. She has lived 80 wonderful years, spending the majority of it with a man who loves her greatly. I can honestly say that I have never seen anyone love anyone like my dad loves my mom.


"That's all folks!"

I am well. How are you?

Day 212
Today is the 203rd day of taking a full dose of Azilect and the 95th day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

When people who know that I have Parkinson's, ask "how are you?" I always respond "I am well. How are you?"  I do this because I am actually feeling pretty good.  The cold weather, however, seems to counteract my medication. In the fact, the colder it is, the stiffer my right arm becomes.

Last week, I was at Frost Valley, which is a great YMCA camp in upstate New York. You basically get pretty nice accommodations, three meals and four activities a day for very reasonable rate. My wife, son, and I along with a friend and her daughter, did some snow tubing, archery, hiking and rockclimbing. When rockclimbing, however, I was reminded that I still do Parkinson's. My left arm was working great as well as my right and left feet. In order to keep my balance, I was able to quickly change my left hand from handhold to handhold, but when it came time to move my right arm in the same way, I failed. There is of course a harness, so while I failed I did not fall.  The way I got around the slow reaction time in my right arm was to make two moves instead of one. In other words, if under normal circumstances, I would have reached up quickly with my right hand, I reached with my left for that same handhold first and then changed to my right in a slower more controlled movement and then place my left hand back on its original handhold. I estimate that this increase my climbing time by about 30%. Is this the end of the world? No. In fact, one could surmise that the fact that I could climb the rock wall at all was what was important.

So if you ask, "how are you?"

The answer still is, "I am well. How are you?"

A Toast To Luck & the Swingers and Shakers Club

Day 165
Today is the 156th day of taking a full dose of Azilect and the 48th day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

2015 was a lucky year for me. It was not, however, without its challenges. Construction in our home went on for far too long and then, of course, there was the pit in a pitiless olive that cost me a tooth and several thousands of dollars for an implant. Next came the crazy neighbors who knew that they had a leak and neglected it causing our newly renovated home to be ripped apart for mold removal. Finally, there was the Parkinson's diagnosis.

You may be asking, "where is the luck in all of this?" Well, construction ended, insurance paid for the mold removal and the broken tooth caused me to go to the dentist who convinced me that something was neurologically wrong with me. So what about the Parkinson's diagnosis? I will not suffer any cognitive impairment, my medications are working and the worst case scenario is that in 20 years I may need a cane.

On Christmas Day, our home was filled with 13 friends and family members. I have a career that brings me joy and fulfillment. I work with and for people who I admire and respect and I have a wife and son that I adore. Therefore, I am not just the luckiest guy with Parkinson's Disease, I am the luckiest person I know.

So I raise my glass of seltzer and drink a toast to luck. "May 2016 bring us as much luck as 2015....   ....without all of the challenges!"

Swingers & Shakers Club

On New Year's Day,  I went to my friend Amy's place for her annual New Years Day party and met up with my two friends with PD. We are calling our group the Swingers & Shakers Club since we all used to go out swing dancing. More on this as it develops.