April is Parkinson's Awareness Month!

In this Post:

Understanding PD, Yoga, Pedaling for PD, Another TV Appearance 

Special Thanks

Thank you for reading this blog. I do not mention often enough how much I appreciate those of you that take the time to read my posts. This post is mostly about my appearance on Disabilities Redefined and Julia Greenberg's epic trip to raise money for the Michael J Fox Foundation.

April is Parkinson's Awareness Month!

Parkinson's Disease can be difficult to understand. People often indirectly ask me (or hint around at), "Do you have cognitive impairment?" The answer is no, but the most important thing to understand is that no two people with Parkinson's disease have the same exact symptoms. The video below is the best one that I have ever seen when it comes to defining the disease and its symptoms.

Yoga

Okay, I have known for quite some time that yoga is extremely beneficial for those of us with PD.  An article by Beth Spindler on the Yoga International Web Site really spells it out.

According to the American Parkinson Disease Association (ADPA), yoga therapy has been shown to visibly reduce tremors and improve the steadiness of an individual's gait.

Yoga is one of the most beneficial complementary therapies for Parkinson’s disease (PD), helping to increase flexibility; improve posture; loosen tight, painful muscles; build (or rebuild) confidence; and, through these benefits, enhance quality of life.

What type of Yoga?

Practices that involve sound (chanting, playing, listening, and moving to music, singing, drumming, and kirtan). Music therapies can be effective in gait training by providing a steady rhythm for gait and stride. Simple rhythmic movements around a room, or shifting from one foot to the other and alternating arm swings while sitting in a chair are staples of PD yoga classes. Movement with music has also been shown to improve endurance, range of motion, strength, and hand coordination. These effects are enhanced when the movements cross the midline of the body (think eagle arms or self-hugging, touching opposite ear, or crossing hand to opposite knee in a seated twist) due to the brain hemisphere coordination required in these action...

Now all I have to do is find some time to spend with my beautiful wife, Kate Lynch, a wonderful yoga instructor, working on my practice!

Racing Heart Rate

A few weeks back, my heart rate went up over 100 bpm. At this point, my GP and Movement Disorder Specialist believe that it is mostly due to stress.  I have an appointment with the cardiologist on April 18 and if it is anything serious, details will be in my next blog post.

 

Disabilities Redefined With Dr Truitt Vaigneur

It was my pleasure to be a guest on Disability Redefined with Dr Truitt Vaigneur. 

Truitt is a great host and wonderful person. This show is truly representing people with disabilities in a new light. Please watch.

Pedal For PD

52 Days, 3838 miles, one mission; raise funds for the Michael J. Fox Foundation! Julia needs your help to raise funds to cover the cost of this trip. My helmet is off to her for taking this journey for all of us with PD!

From Her Website:

This year I am proud to play a part in the fight against Parkinson’s disease. As a Team Fox member I will be embarking on a cross country biking challenge. The ride covers a total of 3,838 miles from San Francisco, CA to Portsmouth, NH over the course of 52 action-packed days and, if you know me, you know that I could not be more excited. A life-long athlete, medical student, and outdoor enthusiast, I have come to find myself enamored by the power of movement to heal mind and body alike. My goal in embarking on this cross-country adventure is to share my passions for neuroscience, community health, and movement and the outdoors in order to help bring physical activity to the forefront of preventative medicine in neurodegenerative diseases - particularly for Parkinson's Disease (PD). 

Over five million people worldwide are living with Parkinson’s disease (PD) — a chronic degenerative neurological disorder whose symptoms typically progress from mild tremors to complete physical incapacitation. In the United States, 60,000 new cases of PD will be diagnosed this year alone. While the average age of onset is 60, an estimated five to 10 percent of people with PD experience onset at age 40 or younger.

The scientific findings regarding the neuroprotective effects of exercise are certainly remarkable, but I encourage you to place even greater weight on the first-hand accounts of individuals living with Parkinson's Disease - it is these personal experiences that bridge the gap between the nitty-gritty, objective scientific facts and the mind-boggling - I dare to say miraculous - power of movement. 

Ride Julia Ride! 

Thank You For Reading!

StoPD Boxing, Muscle Tightness, Anxiety & Montego Bay

This post is sort of stream of consciousness, but then again, my train of thought was always a roller-coaster! So here goes...


Stop-PD Boxing
Exercise is one of the two things (the other is Azilect) which show promise in slowing down the progression of PD. According to the Parkinson's Foundation Website:

"Exercise is an important part of healthy living for everyone. For people with Parkinson’s disease (PD), exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms. These benefits are supported by research."

Regardless of the fact that the research is inconclusive, I exercise regularly and take Azilect.  My disease appears to be progressing at a snails pace, so I am sticking with both.


Back to Stop-PD Boxing.
If you can, imagine 3 minutes of boxing and plyometrics followed by a 30 second break repeated for 45 minutes (plus a 15 minute warm up) and you get a good idea of what Stop-PD boxing is. If you think that 1 minute of jumping jacks is challenging, try sandwiching them between two 1-minute intervals of punching combination on the heavy bag! The class is in  Gleasons Gym, which makes it feel like the real deal.

According to the Stop-PD website:

"The training sessions consist of a balance of cardio, strength training, stretching, bag work, calisthenics and core training.  Sessions will typically begin with extensive stretching and flexibility exercises, followed by 10 to 12 three minute “rounds” of rigorous exercises including fast-paced running, punching heavy bags, working speed bags, skipping rope, one-on-one punching exercises with a trainer, weight training and abdominal exercises.  Some participants, dependent of their level of conditioning and special disabilities, will be allowed to exercise on stationary bicycles and treadmills during parts of the workout sessions."

Anxiety and Stiffness/Rigidity and PD
My worst symptoms right now are Rigidity and Anxiety.  With rigidity, the muscles of my lower back and glutes lock up. Exercise helps as does stretching and meditation, but at times, it still gets to me.

"Rigidity—when your muscles are stiff and resist moving—is one of the primary symptoms of Parkinson's disease, affecting at least 90 percent of people with the disease at some point. It occurs when your muscles stiffen involuntarily."


With anxiety, I begin to play out worst case scenarios in my mind, my heart rate elevates and at times, I am paralyzed with fear. At first, I could tell myself that it was merely a symptom and it would go away, but now, I have real stress from work and it is difficult to tell what is real from what is being caused by PD.


According to the Michael J. Fox Foundation:

"When facing a diagnosis of Parkinson's disease, it is understandable to feel anxious or depressed. But mood disorders such as anxiety and depression are real clinical symptoms of Parkinson's, just as rigidity and tremor. In fact, at least half of all Parkinson's patients may suffer from clinical depression at some point during the course of their disease, according to some estimates."

Alternative Treatment
At the moment I am trying some alternative treatment, which works for about 2 to 4 hours and is best used in the evening before bedtime. It is just symptom relief, but I am sticking with it for now.


Montego Bay
The family and I just returned from Montego Bay. Several days at the pool and beach was great medicine. At one point, three days went by without any thoughts of PD! The sign of a great vacation, of course, always is when you ask, "what day is it?"

Well this post was certainly a hodge podge of different topics and links! To sum it up, anxiety and rigidity bad exercise and Montego Bay good!

Until next time...

Friendship, Happiness, Needs and Wants

Friendship
Sometimes, as you get older, it seems more challenging to maintain friendships. Your family takes priority and your career and daily life get in the way. I was discussing this with two separate friends, David and Don, these last two weeks via messenger, phone and text. What it comes down to is that a real friend is someone you can call after years of not seeing them and pick right up where you just left off.

Case in point, two weeks ago I needed some help and reached out to Don after not seeing him for seven years. I texted him and today, he came to Manhattan via Lake Hopatcong just to help me out. We met in Greenwich Village ate lunch at John's Pizza and caught up. Pretty simple ask a friend for help and there they are. Thanks Don.

Happiness
As Don and I walked down Christopher Street (which I have not done in years), we talked about happiness and quality of life. We agreed that happiness can be illusive and you may have to work a little to achieve it. Or not work, in some cases. It may mean starting your own company or taking a job that you love, even if you make less.

Needs and Wants
As we walked, I realized there was not much I wanted and very few things that I actually needed. I did not even need to take a selfie with Don for Facebook. After all I have the memory. Funny, how spending time with a friend can bring clarity. We parted at the Christopher Street Path station after a few hugs. I hope to see him soon.

If the above is trite, I apologize, but there has been so much hate in the media lately, I felt it necessary to post something positive.

Sarah Silverman
I have such respect for Sarah Silverman. A troll on twitter was harassing her, so she contacted him in an attempt to see if something was wrong. Imagine if we all did this when someone was mean to us? If we simply said something like, "I am sorry if I did or said anything to offend you, but are you OK? Is something wrong? In the end, it seems he had severe back pain, needed surgery and had no medical coverage. What did Sarah do? She paid for the medical procedure! Why isn't this getting more media attention? Remarkable!

Parkinson's Disease
This is a blog about Parkinson's right? Tomorrow will be my third Stop-PD Boxing class at Gleason's Gym in Brooklyn.  Not much to explain here, other than it is wonderful!

Dedication
Todays' blog entry is dedicated to friends Don, David, Cindy and Sam.

250,00 Views, 70 Counties, 50,000 Facebook Posts & Just 1 Goal!

250,00 Views, 70 Counties, 50,000 Facebook Posts & Just 1 Goal, helping the PD Community!

I am so happy to have played a very small part of something so successful. Please tweet, blog and post about this it is so important!

Below is episode 6 and the third episode I appeared in!

I'm Learning To Fly, But I Ain't Got Wings, Coming Down Is The Hardest Thing

Well, I am finally "back up in the air." The pictures featured on this post are from my second dance trapeze class since the diagnosis. I am finding the bar to be harder than I remember and I am not as strong as I once was, but a little time should take care of both of these issues.

I had a few bad nights in the last 6 weeks or so and hence there will be an additional drug and additional challenges. The fact is that I have a disease and while I may never get better, I do not necessarily have  to get any worse.

 All of the above reminds me of the lyrics of Learning To Fly by Tom Petty.

"Well the good ol' days may not return
And the rocks might melt and the sea may burn
Well some say life will beat you down
Break your heart, steal your crown
So I've started out for God knows where
I guess I'll know when I get there"

I know where I started out from and how hard it was for me to get where I am. Earning a Doctorate was like swimming upstream for me and surviving 25 years in Higher Education was no easy trick. I had help from a supportive group of family and friends who I am so grateful for. Part of me will always be that child who played "search for the change in the couch cushions so we can buy food for dinner" with his siblings and while I will never forget where I came from,  I will not let Parkinson's disease knock me down either.

A small plug for Julie Ludwick and the Fly By Night Dance Company. Their next performance, "OTHERWISE - meiamyouandyouareme" will be held at the JCC Manhattan 334 Amsterdam @ West 76th Street, New York, NY 10023. Please see the hyperlink above for more information.

This performance includes Breathe-In @ 2:30-3:30 pm
A FREE workshop exploring the many ways breath can bring us closer to ourselves while also nourishing our sense of community. Open to all adults - no movement experience necessary. This workshop will be great for those with PD and everyone else!

 I leave you this message from the late great Tom Petty.

Lights, Camera, Parkinson's!

Well, 2 of the 3 episodes of Parkinson's TV that I am in are now live! Warning, if you do not want to hear about the side effects of my medications or my struggles with cyclothymia, please do not watch episode 2. There is something liberating about sitting among medical doctors under TV lighting with cameras pointed at you and admitting you have a mental illness. If I have not told you this prior, it was not because I was embarrassed. I believe that there are times when it is necessary to protect yourself and your family against the ignorance of others. There are, however, also times to speak up and advocate for yourself and your community.

I have done very little to improve the lives of people living with Parkinson's disease. What I have done is talk. It is my strength and my weakness. If I am really going to help others with my story telling skills, I am going to be honest. Here is an offer, if you are a doctor, patient, nonprofit organization, support group, pharmaceutical company and you think that hearing my story will help others, I will be there (schedule permitting).

On a lighter note, the impulse control caused by taking Mirapex, has assisted me in becoming the foremost expert on spring snakes! I really do mean that prank with the snake that jumps out of the peanut can! I was wondering if there really was a way to use this obsession to help others?
My friend Tom gave me a goo idea. I have started to write an eBook on spring snakes. 100% of all sales to the the PS32 PTA.  This book is really meant for magicians, but could be useful to the average practical joker or anyone searching for the best for cheapest spring snake. My snake gun, snake fountain and several methods of launching spring snakes will also be in the book.  I am hoping for a mid December release because  nothing says "holidays" like a near cardiac  episode caused by a fake  serpent shooting out of a fruit cake tin!

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