Music therapy, runner's high, endorphins, acting drunk and tricking the brain: my theory

I don’t pretend to know much about music therapy. In truth, I don’t know anything about it. What I do know is that for some reason, the right music and exercise will combine and soon my body cannot resist acting pretty normal. All I have to do is move to certain driving music and exercise aggressively and the music takes my body into a zone and it does things I can’t otherwise make it do. That includes eliminating or reducing those symptoms that would bother me daily including stiffness and out-of-synch coordination. These symptoms will manifest into slight staggering., stubbing my feet while walking, and a loss of energy from fighting my body. If I wasn’t on the receiving end, I would think I was drunk. But it is I, and I’m not drunk. Thank God I have my music therapy to save me from that image. (Most of the time) Ha!

I think I may have figured this whole thing out.  It may stem back from when I was a long distance runner training for a marathon and I would go on 1 or 2 hour runs and listen to music to help with boredom. During these runs, I would almost always get what is widely known as a runner’s high, sort of a zone where I would run for long periods just to get that “high” feeling. I think it was caused by the brain generating endorphins or something like that.

So the combination of memories of my runner’s high from years ago and today’s music and PD exercise may trick my brain into thinking that my PD exercising and music is giving me the runner’s high that I once needed and received from running. Another term for that dependency is called addiction. Hell, maybe I have a few endorphins left over that come to life when they hear my music.

So that’s my theory. I haven’t seen or heard from any other runners who have Parkinson's and have had this experience, but I do wonder if my thirty plus years of running are still paying benefits by helping control symptoms. And even if they do not, I’m going to believe they do because it works for me. Don’t judge. I’m not paying attention anyway.

I tried to show you a video on some of the exercise intensity achieved when I get into my music therapy zone; unfortunately  I'm not very proficient in producing videos. Getting creative in video apparently is not a side benefit from PD as still photography seems to be. So instead of the exercise video, I will show you one of my

NYC Skyring

NYUrbanimages.com, photos. Does anyone want to volunteer helping me to produce my videos?

I didn't think so.

Next blog may cover more about my improved photographs and why my doctor and I believe it is a result and side benefit of :Parkinson's. 

Music,Exercise and Bouncing Ball Combine to Eliminate Parkinson's Symptoms

Some days I will get a clunky feeling, often first thing in the morning, that my body wants to do something other than what I want it to do. Another way to describe it might be, if my body were a puzzle, someone just knocked the completed puzzle off the table and all the previously in place pieces are now scattered. The body is fighting every attempt to walk, to move my arms , hands, neck, etc. I can still do anything I try, I just move slower and have to try harder. This takes more energy and unless I fix it, I will be exhausted in no time. I like to think of this as PD kidnapping my body and daring me to come and get it back.

PD is no challenge for me in fixing this symptom. I win every time. So here is the fix. I stumbled on music therapy the hard way. When I began a regular daily exercise of walking and stationary biking, to help with the boredom and make the time go by as I went through my  aerobic routine, I tried listening to loud, rhythmic, upbeat music and noticed how remarkably fast my reluctant body fell in line and did exactly what I wanted as soon as I asked. Immediately! It was as though somebody put all the pieces to the dropped puzzle back in place in one or two seconds. It’s best if you can walk (or stationary bicycle or stairs, or anything) to the beat, but not essential for me. Using music therapy I am now able to  make this PD symptom go away like its afraid of me. (It should me. I’m one tough MF.) Or maybe it’s the music. I rather think it’s me being tough. You gotta problem with that? Seriously, until PD decided to make a home for itself in my body, I never had the extreme passion for music that takes over by muscles and chases PD the hell out. Music is the most pwerful drug I take for eliminating Parkinson’s symptoms because it drives me to exercise with an intensity that I could not otherwise achieve. Believe me when I tell you this. The intensity of my workout would be a fraction of what I can do with loud, driving upbeat tunes. Right now I am listening and exercising to Imagine Dragons, Talking Heads, some hard Dylan and Nelly. I use Spotify’s paid service because for $10 or so dollars a month, I get to listen to virtually every tune recorded that I have even a remote interest in.

I came across someone else’s solution for fixing the dropped puzzle feeling. They use a bouncing ball; I tried it and it works every time, but it's not effective in infusing extreme intensity into my workout like music. It is a quick fix for adjusting your discombobulated  and uncooperating muscles. I use a nice bouncy racket ball (the ultra-blue Penn ball) and a flat hard surface and bounce the ball from my left hand to right hand, over and over, while standing. By the time I hit 50 or 60 bounces, less than two minutes, the body has been taken back from Parkinson’s Disease, I thumb my nose it’s way and get on with my day.

Try it. See if it works. If not, try a variation that might work for you. Good luck.

 Or if you  know of someone who can benefit from this very simple symptom fixer, please send the link. They will thank you (if they are polite).

The two videos show me practicing what I’m preaching.. 

ResistingPD.blogspot

Along With Parkinson's Came New Writing, Photography and Music Passion and Abilities

Okay. Enough preaching. I promise to get back to basics with the blog and write about how Parkinson’s disease affected me, negatively and positively. I would say that the early four or five years were the most annoying, if only because it was all new to me and I had not yet had enough experience. (Neither did my doctors.) My early symptoms were mainly stiffness when walking, a lack of hand dexterity resulting in problems with typing, shaving, brushing my teeth and doing buttons. And my handwriting was very small. Typical PD symptoms and not terrible. Then there was that wasting away of muscle which to me was most depressing. One symptom that I have never had and still don’t is the rhythmic tremor. I occasionally have a shakiness when doing something delicate like holding a soup spoon. But one of my early doctors put me on propranolol and the shakiness was under control. It still is. This is probably not a Parkinson's disease symptom, oddly enough. (To prove my steadiness, recently at a New York City gun range, I shot at moving targets and did at least as well as a number of younger people who do not have PD. Just sayin…) I will show you how I beat every one of my symptoms later.

But read on about some strange, unexpected possible positive affects of PD.

Early in my PD history, I noticed changes in my interests and the quality in my work in these interests. First was writing fiction. Prior to this onset of PD, I had little interest in, and never tried to write, fiction, and suddenly I found myself writing a novel and numerous short stories. A couple of these were published. Let me  restate this. Along with PD came a sudden ability to write fiction at a quality level that was recognized by others who selected my work for publication. Was this a silver lining to the changes in my brain? Was it a response to the complex cocktail of drugs aimed at making my brain connect better? This is a question for people a lot smarter than me. I can only report that this was a sudden and dramatic change for me happening at exactly the same time as other changes due to PD.

In future installments, I will also discuss the amazing improvement in my photography and interest in music related to my Parkinson’s. Both became obsessions beyond what I could ever describe. Coincidence? I don’t think so. Another sample of my photography is above. Enjoy.

NYUrbanimages.com

Exercise. Get Started. Do It Now.

This blog is about my personal successful experience, found through trial and error over 14 years of resisting Parkinson’s with a single minded determination to live a normal life, and not one dictated by some wimp ass disease.  I will show you what works and what has not. It’s possible that no one else knows about my llst of things that work. Possible but not likely. It would be more likely that a cure for PD has been discovered on an isolated mountain top in Tibet .  This is not a medical blog or a how to, but when I can insert some common sense discussion, I will. Some things are just too important to ignore.

So how did I tap into my bad attitude?

For me, it helps to humanize, or maybe it’s demonize, the enemy. If you have Parkinson’s, then you already know the enemy. It’s that thing that makes you feel like you have a terrible hangover every morning when you wake up. And you haven’t had a drink in a week. (Opportunity for a “good news, bad news” joke.)  The bad news is with Parkinson’s, you always wake up with a hangover. The good news is that with Parkinson’s you will wake up. (As opposed to diseases that will put you to sleep permanently.) Please allow my morbid humor as bad as it is. Thank you.

What we need to do now is get motivated to begin to resist PD. Motivation is what you get when you combine attitude with a pressing need for action and a belief that the action will help. My plan is to convince anyone who has PD and interest that there is a way to make life better, more enjoyable, less frustrating and less painful by taking from what I learned in 14 years of trial and error of resisting PD and holding that demon at  bay or even beating it back by reversing symptoms. I hope that the list of symptoms eliminated or reduced will motivate someone to action. I’m not saying that if you do what I did, your symptoms will react the same way. This is unlikely since most people with PD do not share all symptoms. At least I don’t think so. I never did a survey.

First, and, to me, most important was rebuilding my muscles after my right side was reduced in size and strength by 50 percent in my estimation.  I already mentioned that. I hope to address the specifics of the exercise program as soon as I clear it with one or two personal trainers, even though I did not use a personal trainer. I simply do not want provide this type of information that could be inappropriate for some people, especially if someone is older and has no experience with intense physical activity. I do not want to be responsible for your heart attack.

Keep in mind that I have had a very active physical life starting before high school, continuing through college, then right through my entire adult life. My greatest physical achievement was when I was 35 and ran a full 26.2 mile marathon in Newport Rhode Island in 4 hours, 11 minutes and 50 seconds, coming in around 1600th in a field of around 2500 runners. In addition to running, I played tennis, racket ball and squash, occasional softball and terrible golf. I was also  an aggressive water and snow skier, swam laps and lifted light weights to keep my body trim and fit. So in this regard, I knew and know my body and what it needs to feel good,, look good and stay healthy and probably why I was so freaked out about my muscle atrophy and developed an insane determination to stop the atrophy and repair the damage.

If you know your body and it’s limitations and understand how to treat it, get off your butt and get started exercising. It doesn’t matter what you do to get started, but starting an exercise program is the first step to feeling much better.  

Start exercising. Do it now.

If you need inspiration, google:

Changing Course: Jimmy Choi”s Story

If that doesn’t inspire you, nothing will.

https://www.youtube.com/watch?v=xgRDYZoUnac

You Have a Bad Attitude. This Is Good.

Developing the attitude necessary to do everything possible to resist PD is not a process where you wake up one morning and you decide you have a new attitude. You need to find the attitude that works instinctively for you. You know, something that comes natural. For me, I’m afraid it was a bad attitude that was recognized early on. I seem to remember my mother warning me that as a teen ager I had a bad attitude and I should watch it. (Love you Mom. Mom just celebrated her 96^th birthday.) I distinctly remember one of my football coaches saying, “You know what I like about you? Your bad attitude. That chip on your shoulder.”  I don’t know if having a certain attitude is a prerequisite for fighting Parkinson’s or a good idea for everyone because we are all different and our motivation triggers may be different. Look for what gets you going or sets you off. Find that chip on your shoulder. Use it to resist PD.

For me, having a bad attitude is good. Having a short fuse also helps. Having no patience is one of my faults as a person. With Parkinson’s, this is a virtue. I take this flaw, this negative, and use it to motivate action to stop whatever is happening to me because of PD.  Now combine that flaw with another flaw of mine, the need to get even, and you have a winner, and a real bad attitude. Now focus that, magnify it. Get obsessed with it. And aim it at what makes you miserable: you got it! PD. (Try not to aim anywhere else with this attitude. It might be dangerous!) I have seen psychological profiles of people with PD and that use terms like irritable, ill tempered, and crabby. (You gotta problem with that?)

There you have me in a capsule. An impatient, revengeful, and sometimes crabby old man with a bad attitude. The perfect profile to resist Parkinson’s.

Next, I will show you how to make your bad attitude work for you, just as I found that it works for me. More proof that symptoms can be beaten back through hard work and bad attitude. See recent photo of fully recovered muscle that was previously withered to less than half its current condition.

Exercise to combat Parkinson's Disease

Take Charge and Develop an Attitude

One of the all time great books about life and the way we choose to live it is “The Road Less Travelled.” And so it is with Parkinson’s disease. Every person who wakes up with a twitching thumb, a feathery brush across one’s face, a tremble that wasn’t there yesterday, could be about to travel on a road less traveled and experience PD. And everyone knows that PD has no cure. At first, my expectations for travelling down this road were not great.

But my circuitous route to finding out that I had PD was sort of a blessing in disguise. By the time I was diagnosed, I was fed up with relying on conventional thinking to fix my problems. I knew that there was no one to show me what to do next. After three years of medical mismanagement by conventional wisdom, or as I preferred to think of it, bullshit, I wanted to take control of my health. Relying further on those who couldn’t diagnose a simple case of Parkinson’s was pure idiocy.

I’m in no way an expert in anything. But I have a keen sense of how things affect my body and a lack of respect for conventional “wisdom.” Being a runner for most of my adult life, completing a marathon and dozens of shorter road races, and training in New England weather which ranged from blizzards to 90 degree summer days, taught me to listen to my body and do what it was telling me. This led to me to absolutely believe that the best way for me to begin feeling better was to figure out what made me feel better and then do those things.  Fourteen years later I can report the philosophy is working.

The heart of this philosophy is believing in yourself and a desire to get better. Just as I learned that I could get into an MRI tube despite that this was 10,000 times harder than anything I ever did; it is mind over matter. Therefore, step number 1 is develop an attitude that you are in control of your body and your PD, and not the other way around. In order for my program to work, you must be in control because you will require your body to do things it doesn’t want to do. You will be surprised by what you can make your body do.

Remember the time in my early PD where my body was atrophied with dying nerve paths and withering muscles? Nobody told me what to do. Below is a recent photo of my physique after I made my body regrow my muscles in their entirety.

Exercise to combat Parkinson's Disease

Mind over matter.

Once You Are Diagnosed With PD, You Can Get Started on a Program Resisting PD. Here Is How

So it was around 2006 or so, and I was just told that I had PD. Neurologist number 2 was a generalist in his practice, not a PD or what is known as a movement disorder specialist.  Number 2 told me to find another doctor, someone who specialized in PD. He offered the names of two or three who had a group practice at his East Side hospital. But when I called for an appointment, they wouldn’t take me because they were too busy. I tried to explain everything I had been through trying to get a diagnosis over a two year period, the misdiagnosis, the ALS test, the brain tumor, the spinal tumor.  They clearly didn’t give a shit. They were busy. Call back next year. So much for the Hippocratic Oath.  Since I couldn’t find a doctor that specialized in PD, number 2 kept me on as  a patient for a few months. And for this, I was grateful.

I eventually found Neurologist #3. 

After a few visits, Neurologist #3 noticed my weak and withering  right shoulder, chest and arm, along with a slight dragging of my right leg; he immediately suggested that  I pay a visit to his hospital’s  movement disorder center to review of my conditions and symptoms. As soon as I began seeing #3, he started me on standard PD meds. These are powerful brain meds and it is as much an art as a science to prescribe the right mix. I was not yet stabilized when I saw the docs in the center. Actually, I was getting sick daily for weeks until we got the right balance . As it was, there were a lot of symptoms that were out-of-the-ordinary and that kept doctors thinking beyond PD. Some responded to the meds and some did not. In addition to muscle atrophy, weakness of the atrophied limbs, a tendency to just let my right side hang and and go along for the ride, Also annoying was the inability to catch my breath. The most severe and, for me, most depressing because it was something I had to look at in the mirror every day was losing my muscles and watching my right side become a diminished, sickly comparison of my left side. I admit that I am somewhat concerned with my physical appearance (Can you say vanity, boys and girls?) . So I would wear clothes that would cover the bodily deficiency so I wouldn’t be reminded of PD or whatever the doctor teams were lookinIg for. This was hard for someone who had been fit and active for the first 60 more or less years of life. Hard is the wrong word. It sucked. (That is past tense in case you didn’t notice.)

Other symptoms of the lesser annoyance tribe included constantly feeling sensations of someone touching  my shoulder along with a feather brushing down my face.

A couple of weeks later, after a consultation with the movement disorder group, I was scheduled for yet another ALS, Lou Gehrig’s disease, test. They had explained that they knew of rare cases of false readings and conclusions on this test. I couldn’t seem to shake ALS stalking me psychologically. I took the test without anyone accompanying me. I decided I was not going to let it get to me. I decided the test had to be negative. Not giving in. Period.

A youing male doctor administered the test and followed the printout with too much intensity for my way of thinking. After a few minutes where I watched him re-read the same pages three times, I asked for the results. He didn’t respond for a few too many seconds. He then said that he had to discuss with his supervisor. There was something that he had to review. In my mind, what’s to review. Was it positive or negative? What part of this was confusing? Just then the older doctor came in and stood with their backs toward me and pointed here and there on the printout sheets while whispering between themselves. If I didn’t have ALS, what would they be discussing? I had the same resignation feelings as I had when I read, after my first ALS test, that the patient had tested positive.

To this day, I don’t know what they saw or discussed. I don’t need to know. I don’t want to be tested again. But the results were negative. I did not have Lou Gehrig’s disease.

Starting with the next post, I will move past diagnosis to set up my path to recovery from Parkinson’s, a surprising and what I think is a remarkable reversal of symptoms, a new drug,  a new doctor and a new physique (actually, just the old body rebuilt almost as good as new). I will try to post some recent workout photos of me over the weekend to prove to you that you can do it too..  Along the way, I will offer a list of things PD is and is not. I also hope to introduce or present one or two inspirational PD “victims” whose remarkable stories you will enjoy. I will enjoy telling you about how, after I thought my professional career was over, I got to go back and be productive for five more years and effectively start a new career at age 70.  Finally, I will describe and refine my Resisting PD 12 Step Program. It is what I have learned through trial and error as my way to resist Parkinson’s disease. If you or someone you decide to help, can take what works and short circuits some of my errors and achieves some early PD resistance success, please let me know. It will be something to remember.

When the options are real bad news or not so bad by comparison news, choose the latter.

Its time to get back to my memories of how it felt when I was misdiagnosed or undiagnosed and then first diagnosed with PD. For you I hope that you will gain a perspective of how this disease shows up on your doorstep, uninvited and often unannounced. You could argue that these are characteristics of most health problems. But PD can be stealthy and I could not understand why it continued to baffle my doctors, announced or not. For me, writing about this part of my experience seems cathartic so far. So please bear with me. This was not a good part of my life.

After my episode of yes you do, no you don’t, have ALS, I was sent for another MRI. What you don’t know is that of all the things I have done willingly or unwillingly, getting into an MRI tube is exactly 10,000 times harder than the next hardest thing. And I don’t know what the next hardest thing might be. (It might be typing. I am a one or two finger typist with PD. Sure I can do it, but it’s not pretty.)  So when Neurologist number two told me to schedule a visit to panic land, I wanted to know why. He said my symptoms were not consistent with anything except ALS, which he said I did not have, so he had to look beyond the normal. In my case he suspected a tumor on my spine just below the skull. But I kept hearing ALS.

So I gritted my teeth, convinced myself that I had the strength to exert mind over matter and got strapped in for the 20 or 30 minutes it would take to torture me to the edge of insanity. A lifetime later, I was sliding out of the tube swearing to myself to never allow this to happen again. As it turned out, the torture was a waste of time. No tumor on the spine. Conclusion reached by number two, Parkinson’s Disease. I remember vividly when he told me by saying “I’m sorry. But you have Parkinson’s.” Now from all my research on neurological diseases, I knew PD pretty well. I knew that it did not kill people and many with PD were known to live productive lives. I knew that if symptoms reached a certain level, medicine could help to alleviate. He had nothing to be sorry about. I wasn’t going to complain. When the options are real bad news or not so bad by comparison news, choose the latter.

And to his credit, the doctor was encouraging and positive. His prognosis for me was that I could work for another twenty years if I wanted to. I was in my early sixties so I felt that I would complete my career on my schedule and not :Parkinson’s schedule. After having and then not having ALS, this was all very good news.

But I wasn’t done with ALS. Or it wasn’t done with trailing me around. I will explain in my next post.

The Hudson River

Before leaving, take a closer look at this photo across the Hudson . I am looking for a gallery for my next exhibit which will include this and 19 other photos. More at NYUrbanimages.com The point I want to make with my photos is partly that you can do almost anything you put your mind to and PD can't stop you, although it will try. 

A QUICK NOTE AND MY PICTURE

I'm learning about blogging by trial and error, but I am learning. I had to complete my Google profile before I had access some marketing tools by Blogger. Here is the picture I used as my profile pic. It is a photo of me in my home gym during a workout. I show this as a preview of coming attractions (sorry) that we will explore together, with the initial focus on exercise to combat Parkinson's. Ask your Parkinson's doctor about exercise. If he or she shrugs, fire them. They don't know about the most effective program to turn back symptoms? I did it and I'm still doing it. I will show you how I did it at first, what I learned through trial and error (again) and what I do now.

About those doctors without an exercise program for you? Just fire them.

Good night. I need  my rest so I can exercise effectively tomorrow.

Back to my experiences in the early, dark days of my Parkinson's later. You will find it morbidly interesting, if there is such a thing.  (There is. You will see.)

Like I said. Good night!

JP

The thin line

Time for a rant.

Let me explain a couple of things before continuing the story of how I found out I have Parkinson’s. Everyone diagnosed with PD has a story. What I hope to show is that diagnosis of PD is never a direct, simple and easy test or process. It's not a straight line. I was frustrated because my first neurologist did not act responsibly. (There is one in every group and I found her.) This lead me down a path that was longer, scarier and more complicated than necessary. Contributing to this was a set of symptoms that pointed to more serious illnesses or diseases, hence the MRI’s and ALS tests and scans. The point I want to make is be very careful in selecting your doctor (I was not.). If you are not getting the attention and support you deserve from your doctor, move on. If he or she is not recommending exercise as part of your therapy, ask your doctor to do some research on the subject. Then find someone who already recommends exercise and fire your last doctor.

Now, getting back to the last post where I had just read that the patient had tested positive for ALS, Lou Gehrig’s Disease.

The conclusion that the patient, who I was sure was me, had tested positive for ALS was not just a brief sentence. I watched my doctor type a couple of paragraphs with readings that he analyzed and must have been bad. But I had a couple of minutes to digest the news before the doctor noticed what I was doing. He quickly said “Oh, that is not you. That was the last patient. He wasn’t so lucky. You don’t have it.”

I think of that last patient often because, for a brief moment in time, I was that patient.  It’s hard to describe this feeling.  I sometimes think that the patient the doctor was writing about really was me, and then something changed course. I was given another chance. I think this has helped me  realize that there is a very thin line between life and that other thing. I never take anything for granted. I am lucky to have Parkinson’s disease. I will never complain.

Sunset at Cold Spring Harbor, NY

Photo is a sunset at Cold Spring Harbor, NY. More at NYUrbanimages.com and  Instagram  #lakecharg

Just Who Do You Think You Are?

My first neurologist ordered an MRI of my brain in  2005. Five weeks later, I still could not get the results. I think that she was convinced that I had something called essential tremor which is a catchall term applied to any neurological disorder that doesn’t fit anywhere else. You would think in this day of genetics and DNA., every disease would have a unique profile and characteristics along with a test that determined whether or not one had that disease. But alas, this is not to be. Especially with PD. I did not yet have an understanding of what PD is and is not. After weeks of no response from the neuro doc’s staff I was ready to be rude. So I raised my voice and threatened to sit in their office until I got the results, but the immediate response was "Just who do you think you are? " While I was wondering who I was, they said the doctor was still on vacation for a couple of weeks (apparently a couple is any number greater than 2.) and I would have to wait. When the doc finally returned, she wanted me to come in for further tests (What, and wait another couple of months to get the results?).  All I wanted to know was if I had a brain tumor. (I did not). Nor did I go back to a doctor who could go away for “a couple of weeks,”  actually be gone for five and leave a patient who had Parkinson’s wondering if he had a brain tumor while she relaxed and thought he had essential tremor, not to mention that the patient thought he had ALS and would soon be tested for it.

So I started searching for another neurologist. My daughter helped with a recommendation from another doctor with whom she worked. But it took a while to get an appointment; and all the while, being an engineer by education, I was searching for an exact answer to what was causing the symptoms that were getting  more annoying. My right side muscles began atrophying. I didn’t realize it, but my growing PD problem was now shutting down the nerve connections to portions of my muscles. I was losing muscle size and strength and getting weak.

The symptoms were aligning themselves with ALS (Lou Gehrig Disease) more than with any other disease. I read more than I wanted to know and became sort of an expert in ALS. I remember being very distracted at work and at home. It is not a topic for casual conversation at either place.  It is also not recommended reading. Ever. That includes Tuesdays With Morrie.  On my first visit to the second neurologist, I explained what my symptoms were and he said that he wanted to get one test out of the  way. I already knew what test it was. We walked down a very lonely hallway to a small room with the machine that had one purpose and one test. I was wishing that I had someone with me. I knew the results would be immediate.

The doctor stuck some needle probes into my right side and turned on the current that tingled severely and would determine if I had ALS. There were red lights flashing, needle gauges pointing and beeping noises. I think. While the current was running and he seemed to be taking readings off a printout, he started typing into a computer. I could see the screen over his shoulder and saw what he typed. He typed something that concluded the patient tested positive for ALS. Let that sink in for a minute.

Stay tuned for more fun in my next installment.

Photo is Cold Spring Harbor at sunset in July 2018

Cold Spring Harbor,  July 2018

Welcome (first posted on Facebook July 13, 2018)

Thank you for joining us on a new blogging site and Welcome to the first installment of my blog, Resisting PD. (Parkinson's Disease) https;//resistingpd.blogspot.com  This is not a primer or instruction book on anything. It is simply my experience with PD and how I have chosen to live by resisting PD. I will occasionally rant, sometimes reminisce and always try to be interesting while being as honest as I feel like being. If you have any sympathy, save it for someone else. I don't need it and prefer not to have it sent my way. I wouldn't know what to do with it anyway.

A goal of this effort is to show what PD is and is not for me, and how I have managed to keep PD at bay for 14 years so that I can live a normal life. I will rant a bit on how many doctors do not manage the care of their patients as well as they could and how exercise is the most important part of beating PD at its own game. I will discuss what I have learned through trial and error on how to halt or even reverse symptoms. One thing I know for certain: if you are willing to work at it, you can develop and maintain a better conditioned body and more physical strength than you ever had prior to PD. I know that you can achieve better physical conditioning than the average person of your age. I have done that. In fact, at the risk of blowing my own horn, I think I may be in better physical shape than 90% of all people my age, with or without PD. Sometimes its really hard work, but you can get there too. I will show you how.

And we will show how music helps so much you can't imagine; not to mention an increase in creative abilities. My photography has improved beyond a reasonable amount in recent years. I attribute this to a side effect of PD which I will explain. My doctor has an opinion on this as well. And make sure you pick the right doctor, someone who is an expert in treating people with the right meds for PD. I will reinforce that PD is not a death sentence; its more like something that annoys the hell out of you, but you can handle it.

If all this helps just one person deal with their PD, then it is worth it to me. Too much optimism? You got a better plan on how to live your life, then follow it. This is just my experience... nothing more. After 14 years, my doctor says to keep doing what I'm doing because it works for me. I know I have been fortunate to have a mild and slow growing type of PD and that others may not be so lucky. Or maybe my approach is why it is slow growing and mild. As I mentioned, this is just my experience. Nothing more. Take it with that understanding please.

Let's start with where and when it all began. I believe it was August of 1961, in Webster, Massachusetts, when I started my 8 year high school and college football career. Since as far as I know, no one knows what causes PD, and I had some very mild and sporadic PD symptoms occasionally over most of my adult life, I'm putting my money on football as the root cause of my PD. I remember dozens of impacts on my head that were really violent and caused me to literally see stars against a black background. As a HS freshman I was 160 pounds playing against 200 pound seniors. Every time I got my bells rung, I knew there could be bad results even as a 14 year old. I played both JV and senior team, both offense and defense. That would be the equivalent of playing in at least 18 games per average Bartlett High School season. My last HS game, I was in the middle of the offense and defense at 190 pounds playing opposite a 300 pound monster fullback on the undefeated Mary Wells HS team from Southbridge and who went on to play for Boston College and the Dallas Cowboys. My head took a beating that day as I was told that I was in on 25 tackles, most against the 300 pound fullback. In college at WPI, I was still one of the smallest defensive players in the middle of the line playing against much larger opponents. And although I played only defense in college, I did intercept a couple of passes, ran with the ball and got clocked pretty well when tackled. I remember a 6 foot 8 inch, 280 pound center for Wesleyan University. My brother came to see me play that game at Wesleyan and gave me a ride home after the game. Relying on my damaged brain for directions, we almost ended up in New York instead of Massachusetts.

Now, 50 years later, with head injury listed as a possible cause of some forms of PD, it is easy for me to blame football. I have recently tested negative for the gene identified as a possible marker for risk of PD. I'm grateful that I have not passed the gene onto my three kids and two grandchildren. And I'm so happy that my sons showed no interest in playing football. While I love watching football as a spectator, I have to admit that we as a culture still do strange things to ourselves in the name of entertainment. Besides football, think boxing. Check with Ali.

Hudson River Park, one of the most dramatic photo shoot sites in NYC

Jump ahead to 2004. That's when my PD symptoms started in earnest and I was tested on two occasions for ALS (Lou Gehrig's disease) because that is where all my symptoms pointed and twice for brain and spinal tumors. You won't believe my story on how doctors handled my testing and treatment, such as it was. More about that fun time and who I think I am in the next installment, "Who do you think you are?"

I will try to add photos from my portfolioo and website NYUrbanimages.com to add some color to the otherwise potentially routine appearance of the blog and to show why my doctor and I believe that PD enhances certain creative abilities. . The photos are unrelated to the blog but are such an important part of my life that, as a language without words, the photos can tell their own story.

John Poblocki