More Deep Brain Stimulation Prep

So my daughter and I showed up at my doctors' offices ready to begin the process that would result in brain surgery known as deep brain stimulation (DBS). I was medicine free so that the docs would have a base line against which they would measure the degree of anticipated benefits of the DBS.

I believe that if there is a big difference between meds vs. no meds, the expectations for worthwhile benefits justify going through brain surgery notwithstanding the risks. What happened surprised everyone in the room,  that is, two doctors, a student intern, my daughter and me.

One of the doctors proceeded to administer physical movement and coordination. The test was first conducted without meds and the expectation was that symptoms would be evident and significant. The only problem was that I was able to perform the movements without much difficulty.

So when they did the same test with the aid of medicine about 45 minutes later, it was easier, but not that much different than without meds.

The test results implied that at this point in time, DBS would have insufficient benefits for me to undergo brain surgery. The doctors said that it may still be an option , but not for a while.

I attribute the test results without meds to my rigorous exercise program of an average of 60 to 90 minutes of intense exercise five or six days a week, with at least 30 minutes of light workout on any day when I don't exercise intensely.

The next installment will cover some things I learned from this experience.

Enjoy the photo of Hudson Yards at Midtown Manhattan.

The Road to Deep Brain Stimulation (DBS)

So I want to update my Deep Brain Stimulation experience. To keep this blog manageable, I will do several installments on the topic.

Let's go back a few months when I increased my exercise to about 90 minutes a day and lost about 20 pounds. This was over 10% of my weight and it made moving around easier because my muscles were stronger and the weight to move was lighter. But I started to experience dyskinesia, the involuntary excess movements. So my doctors and I thought more medicine was needed. When we did that, not only was there no improvement, it got a little worse. 

At that point, my doctors suggested Deep Brain Stimulation. I wasn't sure that was needed and my research seemed  to indicate that most DBS was being done on patients who had much worse symptoms. Nevertheless, given the strong recommendation of my doctors, I was ready to start down that road. So yesterday I had my first visit on that  road and which involved getting physically evaluated by the DBS team while my body had not had any meds for almost a full day. The last time that happened was before I started Parkinson's meds over 10 years ago. 

The next installment will explain what happened at that meeting. 

Yes. We both know it ism't easy. That is the point.

Today I got more feedback from people who know people with Parkinson's disease. People who care about people with PD and want them to get better or at least try. Yet, these Parkinson's afflicted people continue to lie in bed or wait for PD to take away a little more mobility, comfort and quality of life.

If only I could get in front of some of these dismayed souls I just might be able to convince one or two to try my approach and they could feel better almost immediately. I know this not just from my own success in reversing symptoms and maintaining my physique and strength. If you put in the work, you will feel better emotionally and physically. Guaranteed. There are studies that concur.

And if you can't even do that research, then just stare at the ceiling and feel worse tomorrow.

Guaranteed.

Advice for the meek of spirit. Amaze yourself.

Believe me when I tell you that Parkinson's Disease weighs upon one's spirit. It makes you want to curl-up in a ball and hide under your bed or sit in in your closet (and suck an egg), (If you are a Steve Martin fan, you know where that comes from. If not, forget it.)

Well...  Don't do it. Parkinson's is trying to trick you into thinking that you can no longer do things; that you can no longer enjoy being with people,; that you'd be embarrassed or fail at whatever you try to do (except hide under your bed or sit in a closet.)  Don't fall for it. PD plays with my head every morning, trying to make me think that I am not capable of doing what I had planned for that day before I went to bed the night before. I'm so used to this that I just ignore it. If I didn't ignore it, I would be letting PD win the battle and simply take over my life.

I know this fact for this reason. About six and a half years  ago, I was retired because I believed that because of PD, I could no longer commute from Forest Hills into Manhattan even though it is a 14 minute train ride. Then my friend, Joel H., who had put together sort of a joint venture to expand a boutique real estate firm into a national player, called. He got the New York owner, Jim W., to hire me to run the property management side of the business. My workload seemed very light with only 5 buildings to run. Previously,I had been responsible for 300 buildings with a property management staff of 700 for a big public company, so I thought I would run out of things to do by my first coffee break; provided I could get to the office and then to the five buildings. I had no confidence that I could muster the strength and endurance to do the job, but I find it hard not to accept a challenge. Nevertheless, I set my goal as making it to work for only  two weeks. I made it. Then two months. And I made that. Then two months became two years became 5 years. And then I was ready to start a new chapter of being a grandfather and a photographer. So I resigned and started anew. When I left the  company, we were managing 70 buildings in Manhattan. It was a busy five years.

This is the story. By putting myself in a situation when I had to perform, I was able to overcome the limitations that Parkinson's was trying to impose on me.  But due to my stubbornness, thick skin (or thick skull), I made it work for over five years.

So don't give in. Don't sit in your closet. Plan your day and then do it, no matter what.

You will be amazed.

This is one of my favorite photos of the Oculus at the New York World Trade Center. By the way, I still manage to travel into Manhattan without a problem.

Do you spell God as an upper-case word?

I will not be defined by Parkinson’s and I will never allow any disease to get in my way of living my life. I will say that as I get older, people have become more important to me than ideas, things, art, music and God. That is if there is such a thing as the idea known as god. I have been ambivalent over time about God.(  I’m not even sure if it is an upper-case word!) Being a young altar boy in a Massachusetts Parish that harbored a Catholic priest child molester will have that affect on some people. It has with me and, therefore, I reserve the right to be ambivalent. Yet I am told by at least 5 people that they remember me in their prayers and it means so much to me that I can’t explain.  I’m not sure what prayer does or how it works but I believe my life is  better because at least five people pray for me. (I hear you saying, “But you have Parkinson’s. How can you think your life is better? It’s better because I don’t have terminal cancer or Lou Gehrig’s disease.)

People. That is what has become such a cherished idea. I know that I love a growing population of friends, family and new acquaintances. I met a person who falls into that category over the weekend. After speaking with this  person, for some reason, she decided to tell me she would pray for me. If that person reads this, I just want to tell you again that I don’t take your prayers for granted. So, thank you for what you do and who you are.

I think realization of the temporary nature of life, and that no one is getting out of here alive, that causes me to enjoy people more than ever. Loving people is a lot more fun than loving money, for example. (If you also don’t love money, send me what you don’t need and I will get rid of it for you.)

This was another blog installment that ends up being on a topic I did not intend to cover when I started today. But it was worth expressing. I think a lot about a lot of people. 

The photo is of some people near the Oculus in New York City.

Let's Talk

After that, you need to start exercising  What? Did you think I didn’t know you haven’t yet started? I have my sources. They are those dedicated care givers, your doctors, your nurses and your physical therapists. I meet these people in the supermarket, at the drug store, on the street and at weddings. And they are talking about you and how you know you can and should exercise but for some no good reason, you don’t. Do you want to explain?

I would think that if you were given the option of feeling much better than you do, and all you had to do was fight through your fatigue, aches, stiffness and tremors for an hour a day so that you feel better for twenty-three other hours a day, you wouldn’t have to think too hard to start a program. It’s not my opinion. It’s a medical fact that exercise is the most effective therapy for reducing Parkinson’s symptoms.. There are cases where patients have gotten out of their wheelchairs and started walking again due to exercise. But, hey, if your approach works for you, you must have a different mindset.

I had intended to write about talking to others about what it’s like to have PD. But I got on my soapbox to preach about exercise again. Let me just add this thought. When I started talking about my having Parkinson’s I became much less self-conscious and more relaxed in public. By talking about my Parkinson’s I find more people who are thoughtful and accepting of my condition and who have made my life better by knowing them.

The photo is in the Catskills, upsate New York, from the top of Kaaterskill Falls. I was able to take this photo because I exercise everyday as physical therapy.

Deep Brain. The sequel?

My new doctors at Columbia University have wasted no time with approaching my Parkinson’s symptoms as aggressively as I have been fighting this disease for the last 14 years. I love my new doctors!!  

I refuse to sit around and give-in to that filthy piece of dog-shit disease. My doctors and psychologists have evaluated me mentally and physically and feel  I am an excellent candidate for deep brain stimulation. I know what you are thinking. The surgery must have low standards. So, what’s your point? You can’t get me down when it comes to fighting Parkinson’s. Screw it all. I am ready to take my fight to the next level. I think I will volunteer to allow a video team to document my entire experience in order to convince more people to grow a pair of balls and fight. The only persons to benefit from this will be those who want to get better, and I mean really want it; not just think about it.  Deep brain stimulation  involves drilling holes in the top of the head and the inserting of microscopic wire and electric transmitters into the center of the brain to transmit electric current to stimulate the brain into producing chemicals to help transmit more efficiently messages between parts of the brain and muscles. This treatment reduces symptoms instead of, or in conjunction with, drugs.  I could write on for chapters from what I have researched. If you want to learn more, Google Deep Brain Stimulation. (If you don’t want to learn more, you are probably already reading something else.) Nevertheless, you will have a lot of fun reading about this, no? Well, if you are still reading this blog, it says something about your taste in reading material (not sure what).

Don’t expect my Deep Brain Stimulation documentary to show at the Sundance Film Festival. Nevertheless,  auditions start next week.

Some of this is tongue in cheek; but I am seriously considering filming my entire deep brain experience to encourage others who might benefit.

My Rush Hour Revelation

Remember back when I wrote about my bad attitude? I still have it. I think. You noticed the hesitation? This is why. So I was heading to Grand Central by New York City subway to catch a Metro North train to travel upstate to visit my son. I needed a lot of camera equipment because he and I would be searching out some interesting venues to photo.  Altogether, my camera case on wheels weighed about 25 pounds. I also carried an overnight bag. And when I travel on public transportation, I use a cane just as a precaution in crowded stairways, platforms, etc. Getting knocked down is not only embarrassing; it can kill you. The only mistake I made was travelling at rush hour, which can also kill you.

My first hint was before I even entered the subway stairs near my house when a woman who was coming towards me with a crazed look had the option of waiting a split second to allow me to pass through a narrow sidewalk aisle or pushing forward, which required that she put her shoulder in my chest, drive like a fullback and attempt to push me out of her impatient way. Luckily, I anticipated her actions and braced for the impact. We collided hard. She bounced off my chest and simply continued on her way as though it was necessary and part of her routine to intentionally push into a man walking with a cane and heavy bags.

She was oblivious that she had caused another person to feel her intentional collision. Don’t get me wrong. I was not knocked off my feet or hurt in any way. But a polite word would have been what a civilized person would instinctively uttered. Then, as soon as the first rude woman continued on her oblivious way, a second woman, probably the friend of the first woman, repeated what her friend did.  A bystander saw what I experienced, winced in sympathy and shook his head. After the impact with the second woman, I stopped and turned around to confront the second rude woman about her intentionally shoving what appeared as an unstable man who was moving slower than these women thought was acceptable, but she had also scurried off on her rude way.

Over the course of the rest of my two-hour trip each way, I had to experience rush hour rudeness that I never realized was so prevalent. I guess you have to look and act feeble to experience. Two people actually kicked my cane to get it out of their way. I won’t bore you with more details, but rush hour apparently turns some New Yorkers into thugs. And, I’m afraid that based on my limited survey that day, violation is heavily skewed to the female population. This makes it impossible to fight back of course.

Back to my bad attitude. By the end of my return trip, I was prepared to meet anyone who tested me with a pushback at least three times as hard as anyone shoved into me, gender notwithstanding. Fortunately, being prepared to do something and doing something are distinctly separate actions. So despite my bad attitude, and my Parkinson’s, I chose to experience the rudeness of rush-hour as a spectator. At least for now. Deep down inside, I know that the two rude women are not typical New Yorkers, (They are probably French tourists.) and except during rush-hour, may not even be rude.

That may be another benefit of Parkinson’s. The ability for PD patients to see the world around us in a way others may not be able to.  We remember our pre-PD  world as interesting, enjoyable and full of people we admire and love. Along with a few rude people who snuck in.  And with Parkinson’s, the world is still interesting, enjoyable and filled with the same people. Only you appreciate everything more. Both the old life and the challenge of each new day.

The point is, don’t give in to Parkinson’s. Don’t let your health condition change who you are and the way you see the world.  Enjoy your life and the world and people around you. To live any other way means Parkinson’s has won the battle. 

Enjoy the photo of Kaaterskill Falls in upstate New York and visit NYUrbanimages.com and Instagram #LakeCharg .

My photography obsession and Parkinson's

I have been talking and writing about my absolute obsession with photography which started shortly after I exhibited Parkinson’s disease symptoms in late 2004. It took a few years before my doctors realized that it was just Parkinson’s disease and not ALS, a brain tumor or a spinal tumor. As unpleasant as Parkinson’s tends to be (actually, it sucks), it is not remotely like those other things. Shit, I get nervous just writing about them. (That’s why I’m not going to.) Compared to them, Parkinson’s is a walk in the  park. (Carefully though. A symptom of Parkinson’s is stubbing one’s toe and tripping.)  I think the Parkinson’s diagnosis came in 2008, after the obsession started. So I want to think and write about this photography obsession because in doing so, I hope to eventually prove or disprove (to myself. No one else cares.) it all stems from Parkinson ‘s. As of today, it is what I believe.

 What I want to explain is when I place my camera viewfinder to my eye, we become one. Can’t find any other words to describe what happens. We become one.  (“I am my camera” comes close though.)

When that happens, I can feel the image as well as see it. It makes me feel good, no matter what the image is. If I see and feel it in the viewfinder, it makes me feel good. With that, the image becomes an experience that I must share. I want others to share my experience, and I just assume others will want to do so. I realize that this sounds presumptuous or even arrogant. But I really appreciate it if you enjoy the image. I also realize that very few photographs are liked by everyone who sees them. Taste in photography is not universal.  So even if one of my photos does not grab you as an experience, I hope you can put up with my obsession and understand where it comes from. (I think.)

It’s okay if that isn’t possible, I can deal with it. There is a photo below. Be kind.

NYUrbanimages.com

John Poblocki

At some point, you're going to need physical therapy.

I have a physical therapist come to my house twice a week for an hour each time and it's covered by my insurance and Medicare. I have a co-pay, but what I get from this service is amazingly helpful. The PT started for pain in my neck (for which I had 36 visits at two facilities and which were not helpful.) and has expanded to include managing Parkinson's symptoms. My assigned therapist is absolutely the smartest, most pleasant, professional and attentive of the many I have used over the years, and I have  the convenience of not having to go to a facility only to be ignored while the therapists stand around and talk about everything except your treatment. (Note to therapists: Your clients hear everything you talk about.) Not all physical therapist facilities are like that. Some are, some aren't. But when you qualify for and receive home visit physical therapy, you get complete attention for a full hour, not the ten minutes you learn to expect when you go to a facility. And you don't have to listen to the latest gossip from the staff of a facility.

Here is a photo from a recent shoot. See more at my photography website.

NYUrbanimages.com

I'm fine.

Why does everyone I know ask how I'm feeling in such a serious way? I appreciate your asking but do I really look that shitty? Am I just getting old... like everyone else? Or do I look worse than everyone else? Look. I feel fine. Not great, but fine. I haven't felt great since I was 22. Since then I have been the same, which is fine. And I still have had Parkinson's since the fall of 2004.

Oh, I get it! Since I started writing this blog, almost everyone I know now knows I have Parkinson's. That was not my purpose. It was and remains my purpose to help others with my approach to this disease which is to not give in to it.. Ever.

Most of the time I just ignore it. Or get pissed off at it. As an example, tonight I worked out in my gym for 2 hours as hard as anyone my age could. It's well after midnight, just posted a couple of photos on Instagram (LakeCharg) and I'm still feeling fine. Not great, but fine.

By the way, I hope you are fine also. Maybe even great. And thanks for asking. It makes me feel fine.

Tai Chi on sale

If you or someone you know has Parkinson’s and is having difficulty getting started with anything that sounds like, looks like, smells like or rhymes with exercise, despite my constant harangues and diatribes in some of my bloggings, I have an opportunity to help get you, him or her moving and possibly enjoying it. No, I’m not kidding. Read on!

Go to www.TryGreatCourses.com and find the “Essentials of Tai Chi and Qigong.” This course offered on line via streaming or with a DVD format. The latter does not require a computer, just that thing you use to watch movies on your TV. Wait, it gets better. There is an amazing sale for this Tai Chi instruction of several hours for $25 for streaming on your PC or $35 for the DVD format marked down from $270! My lucky day since I had considered signing up for a local in-person Tai Chi class for $450 for three months.

I tried it earlier today and I am more that satisfied that I invested $25 very wisely. What I want is to improve my sense of balance and learn how to relax through the meditative aspects of these ancient Chinese movements.

The people behind this and dozens of other programs also offer similar courses in everything from Building Great Sentences (I know what you are thinking about my sentences. Just stop it!) to Great Ideas of Philosophy and  The Joy of Mathematics. They partner with other people like National Geographic and The Culinary Institute of America.

There is one hitch. The sale price of $25 or $35 (Regular price is $270.) is only good until October 25^th. To be honest with you, I have very limited expectations that anyone with Parkinson’s who is not exercising to help themselves have a better life, will try Tai Chi. I’m trying it at the recommendation of my new Parkinson’s doctor at Columbia University Hospital Neurology Department.

Ask your Parkinson’s doctor if he or she recommends Tai Chi. If they don’t know about it, you need to find a new doctor.

Give it a shot. You’ve got nothing to lose except feeling shitty.

Speaking of shots, here is a pretty nice one of the Whitestone Bridge linking Queens and The Bronx in New York City. Yes, I have Parkinson's. It does not keep me from what I love to do. See more about my photography at NYUrbanimages.com .

Okay. I'M BACK!

So I took a couple of days off. If you were thinking Parkinson’s had done me in, think again. I admit that I am going through some changes. This I expected when I moved to a new medical practice (that’s where doctors go to practice on real live patients.) Apologies to my doctor relatives and friends. But no apologies to neurologists who are not trained as Parkinson’s experts but are masquerading  as something they are not and pretending they can treat Parkinson’s diseased people. Shame on you.. Okay.so I got a little more frustration off my chest.  Can I post more frustration on fake Parkinson’s doctors tomorrow for anyone? Thank you in advance.

To keep you informed, know that my physical therapist is so helpful and caring. She is an expert because she is trained to treat Parkinson’s patients. She visits me at home twice a week and has really helped me with so many issues. If you don’t have a physical therapist, you may be wasting so much time and energy. I know because I wasted so much of my own time and energy. Here is a list of things she has or will help me with or locate other resources as I need them.

1.       Review exercise program and make changes to avoid injury and help overuse injuries to heal.

2.       Provide physical manipulation to neck, shoulder and back to help heal some muscular strains and pain.

3.       Provide walking and balance training to eliminate common PD problems with these functions.

4.       Recommend other programs like Tai Chi and boxing.

I like her a lot and I want to make her an expert with those symptoms that affect me so that she can use this expertise to help others. (Consider it a gift. You’re welcome.) She thinks I am quite knowledgeable about exercise (50 years of exercise will make you an expert also. Try it.) and hope to help her expand her knowledge of exercise and its impact on PD.

She already knows that exercise in the best way to fight PD. If you have PD and you do not exercise in some format (that includes sitting in a wheelchair and doing what you can, because that whatever you can will help. You might even get rid of that wheelchair. It wouldn't be the first time it happened.)

There are very few reasons not to exercise. Chances are whatever excuse you are using isn’t a good one.

Proof that intense exercise works in stopping Parkinson's symptoms

Okay. Pay attention. This is important.

I have been working with a new physical therapist for two weeks. She is the best PT I have ever worked with. (That would be seven PT's total.) She is expert in treating people with Parkinson's; has taught me much in just two weeks and has provided me with a whole bunch of new weapons in my fight against Parkinson's.

This is the important part. She told me that I work harder at keeping physically fit to fight  PD than any of her other patients. Then she said that I was her most mobile, agile, and almost physically normal patient.

There you have it. Confirmed by an expert Parkinson's physical therapist. My exercise program works. And not only does it work, but it is so effective that her patients that are younger and who have had PD for many fewer years than me, cannot compare with my ability to keep PD from affecting me the way it would otherwise because of my relentless battle.

I exercise more than anyone else working with my therapist and I have the mildest and fewest symptoms. That is not a coincidence. I made that happen. If you have PD and you do not exercise extremely hard, you should talk to  your doctor about an intense exercise program. If he or she is not willing to help you give this priority, find a new doctor. Then thank me.

I'm waiting.

I did a photo shoot at the World Trade Center last week. This is one shot.
I can still take professional quality photographs because my Parkinson's is hardly affecting me because my exercise program works. Please visit my photography website NYUrbanimages.com

Also last week, my photographs were exhibited at One Art Space in Tribeca, for my second New York City show. I'm now working on my third. Stay tuned.

I intend to beat back Parkinson's sympton's if it kills me.

To keep my promise to let you know what I am doing, here is the latest. There is a lot going on in my dispute with Parkinson’s. I intend to beat that little bastard of a  disease if it kills me; so even when I  am exhausted, I keep pushing  so that I can feel l will never give in to PD. Never.

I saw my new neurologist just 2 weeks ago and we hit the ground running. I have a consultation with a deep brain stimulation specialist tomorrow afternoon. I am in a photo exhibit with 14 other photographers in 2 days. I need to get 3 photos from the lab in Midtown to the gallery in Tribeca. One of the photos is 5 feet wide. Right now, I am waiting for the lab to call. Oh…and I am writing this blog. And I am entering 2 calls for art from a lower eastside gallery looking for exhibit stuff to show and sell. That is enough change for a couple of weeks.

Not going to happen; instead, yesterday I met my new physical therapist. She called the night before and from her voice I was expecting a 50 ish woman with a rigid approach. There is nothing wrong with that. I like experienced people. Then who shows up is a 33 year old intelligent, charming, pleasant yet mature young lady who sings along with the music I play in my gym despite the fact that she could be my granddaughter (almost). Makes me feel young (almost). To top it off, she is experienced with treating both Parkinson’s AND neck, back and shoulder problems. She is now part of my team. Beating Parkinson's takes a team. Remember that. Based on what I have learned from her already, I believe every Parkinson's patient must have a physical therapist on her/his team.

She told me that I was not normal (but I knew that). She said normal for someone with PD is to not exercise and that it was hard to get PD patients to exercise, even when they know how important and effective it is. When I told her about my fitness program to combat PD, I could tell that she was amused.  

She critiqued my exercise routine and to my surprise found numerous deficiencies and problems, some of which could be contributing to my pain in the neck. I can’t wait to get rid of this pain. I would rather be pain in the neck than have one. My wife could argue that with half of that statement, I am already successful.

I will be seeing my therapist twice a week. When we establish a new program to keep me fit and loose the pain, we will explore boxing and tai chi as added therapy.

Please join me at the reception for my group photography exhibit Thursday (this week) Sept. 20 6 - 9 PM at One Art Space, 23 Warren Street, at Church Street, a few blocks North of the World Trade Center.

                                                                                                                                          

Just say "Thank you for your time Doctor." Then leave and don't go back.

I just went through the aggravation of changing doctors in mid-course, otherwise known as changing horses in midstream. Since Parkinson’s is a progressive disease that attempts to attack you from different directions simultaneously, what works for treating symptoms is constantly being challenged. Or what works today may not work tomorrow. Fortunately, there is progress being made, slowly but surely, through the Parkinson’s Foundation www.parkinson.org

Are you absolutely positive that your doctor is the best Parkinson’s doctor in your neck of the woods? Shouldn’t you be? Settling for second best is not a good plan if you have PD. I am now on Doctor number 5, and I can comfortably say that each move improves my ability to live a normal life (if there is any such thing).The Parkinson’s Foundation has an excellent tool for anyone looking for expert advice and resources to deal with PD.

So when I went shopping for a new doc, this tool made the process a lot easier than I expected. I used their website www.parkinson.org and found it easy to use with a list of “centers of excellence” around the country and where I found information on the doctors I now rely on to keep me ahead of my battle with Parkinson’s. Unless you treat PD as a continuous battle, you will lose the war. With Parkinson’s you can’t let your guard down and you can never give in. Never.

These are the steps I followed to change doctors.

1.     As much as I liked my doctor, deep down I knew I could do better. First step was recognizing the shortcomings of my guy. These were what I perceived as deficiencies. He was practicing all alone. There were no other resources in the practice. As a result, he always seemed pressed for time. This led me to think he didn’t keep up with all the treatments available. (I was right.) I had the sense that he felt that drugs were all that was needed to treat me. I knew from my 14 years of PD that exercise was very effective in eliminating most of my symptoms, yet he never discussed this with me. How could this happen? So for me, it wasn’t hard to see I should be getting more medical assistance than mere drugs.

2.     So with a little internet savvy, I came across the website www.parkinson.org which is mentioned above and is a treasure trove of resources and information that everyone affected directly or indirectly by Parkinson’s should explore. On this site I found reference to “centers of excellence” as the latest and best resource model available. These neurological medical practices approach PD with multifaceted resources.

3.     I then found those centers located in New York City and then visited each website and decided on the one that seemed to fit my needs best. I checked the credentials and expertise of each doctor and found one taking my insurance and new patients.

I called and made an appointment.

There in a  nutshell is all it took to get setup for the best medical treatment now available for my Parkinson’s. It was not a lot of work. In fact, if you are being treated by a general neurologist who is not a specialist in Parkinson’s, or (I know this sounds inconceivable) by a GP (General Practitioner), then you need to deal with reality. You are not being very smart. If that isn’t blunt enough, then try this. Stop the nonsense.

For me the next steps are to look at all the additional treatments I now have available and decide on adding those my new doctors recommend.

I will keep you up to date. Complicating this is the fact that there is no standard treatment that fits all, EXCEPT FOR EXERCISE. That is a universal and successful treatment for all symptoms.

If you do just one thing to help you fight the progression of PD, then choose exercise. In fact, that is a great screening question for finding a new doc. If the new doc doesn’t think exercise is at or near the top of the list, say “Doc, thank you for your time.”

 Then leave and don’t go back.

PS. I have been invited to exhibit some of my photography with 14 other photographers September 20 to 24 at One Art Space, 23 Warren Street, New York City. You are invited to come to the opening ceremony (which means drinks, music and good conversation with the photographers) at 6-9 PM this Thursday. Have a peak at one of my photos to be shown.  

IMPORTANT MESSAGE TO NEUROLOGISTS NOT TRAINED AS PARKINSON'S SPECIALISTS

Okay. So I tend to the dramatic and occasionally use a little hyperbole. No, I am not likely to start a lawsuit over some of my prior doctors failing to advise me on the importance of exercise as a Parkinson’s Disease treatment. (Although I do reserve the right to change my mind. Just piss me off and find out.)  I’d rather use my energy to focus on containment of my PD. As I get older, and PD continues to chase me, I need all the energy I can muster.

I just received a package of info  from the Michael J. Fox Foundation for Parkinson’s Research  (MJF). MJF is good at providing encouraging news on advancements in research on curing PD. Coincidentally, MJF recommends that Parkinson’s patients see doctors specially trained in movement disorders like PD and, in conjunction with the Edmond J. Safra Fellowship in Movement Disorders, provides financial support to medical schools to help build a network of more qualified Parkinson’s doctors and other specialists.

There are so many advances in the treatment options available or soon to be available, too many to list here. If a neurologist is not a specialist in Parkinson’s disease, he or she is not going to be up to date with he latest available options for  treatment of PD. Just to mention one: Deep Brain Stimulation. This has been around since 1997, but In 2016, the FDA approved a Deep Brain Stimulation for patients with lighter, less than severe symptoms. And today there are three devices on the market from just one available just recently. This may be the most promising development in controlling symptoms in the immediate future. That would be like tomorrow. Why wait? I have a session scheduled with a DBS specialist at my new doctor group to see if I qualify for this treatment. My last doc never even mentioned that as an explorable option. If left to him, I might have never even been presented with this opportunity.

Which brings me to today’s message to doctors who are not specialists in Parkinson’s disease. Please. DO NOT ATTEMPT TO TREAT PARKINSON’S PATIENTS. You are not contributing to a solution and you may be doing your Parkinson’s patients a disservice, plus you may  even be acting in an unethical manner. Please get out of the way. All you have to do is find the nearest center of excellence in the treatment of Parkinson’s and refer your PD patients there. Better yet, follow up with this Foundation and see if you can become a PD specialist.. If you do not know where to look, contact The Parkinson’s Foundation. (1- 800-473-4636 or helpline@parkinson.org  ) I'm sure they will be happy to help.

Meanwhile, I am happy to show you a photo I shot in Manhattan for my photography business. Hope you like it.

Manhattan

This could end up in a lawsuit

I was right.

Everything I have been saying and writing about how exercise is the best defense against the advance and even the existence of Parkinson’s, including my seemingly overstated claims are now verified and documented by the Parkinson’s Foundation’s research. Here is a sampling:

1.     Exercise improves cognitive power and performance. That’s right. It helps you think clearly.

2.      Exercise forces the brain to create new neurotransmitters thereby countering PD and it’s annoying symptoms.

3.     Exercise makes dopamine work better.

4.     Exercise slows the progression of PD.

5.     Exercise improves concentration.

6.     Exercise improves memory.

7.     Exercise reduces depression and anxiety and

that’s not all. The Parkinson’s Foundation compares exercise to mandatory medicine that should be part of absolutely all  people’s PD fighting tools regardless of age.

It now baffles me more than ever that many GP’s and general neurologists continue to try to treat their PD patients without the expertise or training to handle this disease in it’s many manifestations. The result is that thousands of PD afflicted people are not being properly advised to exercise aggressively in order to minimize symptoms and slow the progression of PD. Isn’t there a rule or ethical code that requires doctors to send their patients to the more qualified specialists?

For me, this is the source of my outrage: The first four PD doctors of my 14 years of Parkinson’s never suggested exercise as a way to beat PD. I figured this out for myself. Why is that? How is that possible? I now have a book (or brochure) published by the Parkinson’s Foundation, Fitness Counts. If I were to write a book about my experience with PD AND I was infinitely smarter, more educated and trained, I would have written this book. I am, at least, gratified that this book exists. Everything that I have learned by trial and error is in this book. In addition, it goes well beyond what I could have known or figured out myself. Not once did any of my 4 prior doctors supposedly treating me for Parkinson’s ever mention anything about the topics covered so well in this book. The thought crosses my mind that I was denied a potentially better life by the neglect of my prior doctors who didn’t  care enough about my well being to get me this readily available information.

I note that they never missed collecting a copayment . Greedy fuckers.

I need to think some more about this.

Photos are of me working out and figuring out on my own that exercise is critical to fighting Parkinson's. After 14 years under the care of 4 neurologists, I found a publication  of the Parkinson's Foundation that describes everything I could have been doing to improve my physical condition had any of my doctors taken the proper course of my treatment and referred me to more qualified specialists who would have given me this free book or managed my exercise program.

New doctors and I woild rather be liucky than smart

Just got back from my visit with the largest Parkinson’s group medical practice in the country. Turns out to have been a good idea. Of course, only I knew the docs were auditioning to win me as a patient… I didn’t want them to know I might be writing about them later in the day. Given my generally skeptical attitude, and my lack of patience and respect even when it is due, I wouldn’t want me as a patient. (Notice my clever use of patient and patience in the same sentence? Just pointing that out.)

Also turns out that the people I met from this group are the nicest, most professional, most concerned and helpful people I have ever met in a medical environment. Let me fill you in.

While I found the doctor with whom I met on the internet, I got lucky. (I would rather be lucky than smart.) She is a very senior member of the group and an expert in a drug I take and which is a powerful agent with sometimes problematic side effects. She said this drug was like heroin for PD patients and wants to take me off it. I am fine with trying that. She wants to explore a treatment called deep brain stimulation as a better therapy to control symptoms. 

She was successful in convincing me to be a guinea pig for three studies sponsored by Yale University, UPenn and Columbia University in searching for common denominators of the causes of Parkinson’s. I’m happy to contribute blood samples, brain tests and whatever else I can. You never know who may benefit in the next generation. It just may be my grandchildren. You’re welcome.

A program coordinator gave me a brain test to determine if I had any diminishment of my brain functions which can affect some PD people. The test was challenging and when I took it, I thought I did only so so. I was happy to find out I got a prefect score. (I told you, I’d rather be lucky than smart.)

Conclusion: Finding resources beyond my single practitioner was the right decision. My new doctor got me to thinking about how I want to live the rest of my life. She caused me to want to plan for a long and productive life given the fact that both my parents live or lived beyond 90. Mom is 96 and going strong.

Who knows, if I live long enough, maybe a cure will be found in my lifetime. Then I will have to find something else to complain and blog about.

The photo below is the reflection of One World Trade Center on the 9-11 Museum. More photos at NYUrbanimages.com my photo website.

9-11 Museum

Is the glass half full, half empty or just twice as large as it needs to be?

Obviously, I am not alone with my positive results with beating back PD symptoms through exercise. Someone at the Michael J. Fox  Foundation (MJF), was kind enough to send me  information  they recently published on what they have found related to exercise and Parkinson’s symptoms. Because my blog is personal, I decided to compare my experience with that of the MJF article. I see similarity and differences too. My expectations have been different and more demanding than the MJF program,.

First of all, I started my exercise program because I saw my muscles shrinking and my strength going away and it scared the shit out of me. I had been in very good physical condition my whole life, even running a 26.2 mile marathon, and suddenly I was a shriveled weakling. I attacked my muscles with a program of mostly light weight-lifting and got immediate results. As the disease keeps trying to advance, I have responded with more intense exercise. The surprise with my initial program was that most of my  symptoms including a dead leg, inability to do detailed hand manipulation, a lack of arm swinging while walking, some clumsiness while moving, etc., either improved or went away. This made perfect sense to me because a strong muscle should be able to work better than a weak muscle.  I still don’t understand why more study of this phenomenon has not been done.

The MJF studies referenced are sort of “if you do this, you will feel better. So why not exercise.” Maybe it’s the engineer in me that wants a better response, even an answer to why exercise works to halt the progression of PD. Some thoughts and questions logically need answers. This point begs answers. Remind me to get back to this point later. It’s just the way engineers approach life.

There are a couple of critically important take-aways from the MJF studies,. (Please memorize these points and think about them daily. You may even want to thank me some day for pointing these out.)

1.       People who exercise regularly are less likely to contract Parkinson’s Disease. (No, that is not a misprint. It is real.)

2.       People who exercise regularly but do contract PD anyway, are likely to have the severity of PD lessened as a result of exercise.

In my next post, I will compare my program to that recommended by MJF. They are significantly different.

I am reminded of the story of the engineer, the optimist and the pessimist. The optimist sees the glass as half-full. The pessimist sees it as half empty. The engineer sees the glass as twice as big as it needs to be. 

Photo was taken last night in Bryant Park during a play.

My doctor called me a beast.

Last week I saw a new pain management doctor for a chronic pain in the neck. (Not a person, i.e., Not this:  “that guy is a pain in the neck.”. I mean an actual pain in my neck.)  Doc thinks the pain is from muscle spasms. He did an evaluation of my overall strength and conditioning before injecting lidocaine and steroids into my shoulder muscles. He said they were in constant spasm, which can be a Parkinson’s symptom. There is no way to be sure of why these muscles spasm.

While Doc was checking my strength he asked me to push him away from me towards the wall. I did what he asked. I think I took him by surprise as he flew across the room. He then called me a “beast.” He said he meant it as a compliment and I knew that; but it was also confirmation that I am accomplishing something with my intense exercising that surprises even my  doctor. I’m happy to be a beast. Try it. It feels good!

George Washington Bridge at the Manhattan night skyline

Doc said there were no limitations to any exercise I wanted to try, other than that imposed by the pain levels in my neck. So I am free to crank it up with my TRX system.

Well he did say to avoid juggling bowling balls. (He had a sense of humor.) Don’t repeat this but I’m going to try that once the pain in the neck is gone (the actual pain. Not the person.) 

Photo is taken looking under the George Washington Bridge at the Manhattan night skyline in the distance. More at NYUrbanimages.com

I am still really pissed off at this!

If I’m going to preach to you and others with and without Parkinson’s disease about taking responsibility for an aggressive approach to fighting for your health, in my case the encroachment of PD symptoms, in your case maybe whatever is out to get you, then you expect me to practice what I preach. Right?

Well I’m on it. It seems to be time to take another step. While I have been pretty satisfied with my current PD doctor, he is a single practitioner who is very good at designing the just right balance of medications but is totally focused there. Because of the effectiveness of my intense physical fitness program with reversing almost all symptoms as they tried to occur, I have been able to minimize the impact of Parkinson’s on my daily life so far

But now, before things get beyond my control, I want a more balanced program that attacks PD before it knows I’m coming at it.  So I have been looking for a comprehensive Parkinson’s medical group. to help me continue to kick the shit out of PD.  In this search I have noticed the growth of “centers of excellence” (COE) , a designation by the Parkinson’s Disease Institute, for the treatment of Parkinson’s and movement disorders. 

These COE’s  encompass all or most of the specialties I am looking to have available when and if I need them including  Parkinson’s neurology expertise,, physical therapy, physical training, speech pathology, , neuropsychology, diet and genetic analysis and treatment trials. While I am pleased to find this resource in my backyard, New York City, the bigger question is why does it  continue to be incumbent on a Parkinson’s disease person to uncover this type of help? With all due respect to qualified Parkinson’s doctors and those organizations raising funds supporting PD research, clinical trials, etc., there is a communication problem that needs addressing and it requires focusing on those practitioners not qualified to treat Parkinson’s patients.

Why do so many general practitioner doctors and general neurologists untrained in the treatment of Parkinson’s ignore the needs of their Parkinson’s afflicted patients and continue to provide inadequate medical advice. The more I think about this, the more pissed off I get. Bear with me while I try to refocus away from anger.

Okay. I’m refocused. (Not really. But I tried.)

I’m not bashful when it comes to fighting to make sure I get the best chance of living as well as I can. I have stuck an elbow here and there as necessary. As a result, I have nothing to complain about when it comes to PD. Not so for so many others. I don’t even want to think about how many PD people sit in nursing homes when this may not be necessary at all. If it is more than zero, it’s way too many. I am happy to share what I learn in my daily PD battle. Please  help me by sharing my posts and following this blog. You never know whom you might help and how that simple act may pay itself forward.

But at this moment, I’m still pissed off.

 The 9-11 Museum. NYUrbanimages.com

911 Museum more at NYUurbanimages.com

My favorite and least favorite Parkinson's disease symptoms

Brooklyn Bridge taken across from the Manhattan Bridge

Yes, boys and girls. I do have a favorite Parkinson’s symptom. It is the loss of smell. I appreciate losing this sense whenever I get on a very crowded New York City subway car on a hot and humid summer day. A rare benefit of having the disease.

Least favorite symptom. The loss of my sense of balance, especially on a crowded New York City subway car (again) if I lose my grip on the pole and end up crashing on top of the people next to me. So far, when that has happened once or twice or so, in unconventional style, my fellow New Yorkers seem to understand. They just prop me back up and continue to listen to their Spotify mix, like nothing happened. Nobody says a word. I do the same. I act like everybody should know that I do that once in a while, so get over it. (Sometimes tourists get startled when I fall on them. What is wrong with these people?)

Like I always say, it is what it is, so deal with it. Complaining doesn’t change a thing.

Photo is another of my favorites taken from the Manhattan Bridge looking across to the Brooklyn Bridge and a tourist boat. Extraordinary detail and color. Printed on metal.

More at  photography website:   NYUrbanimages.com

After writing this, I thought about apologizing.

Another good news; bad news scenario. This time it is the evaluation of the TRX exercise system that I bought to add to my arsenal of weapons to resist Parkinson’s disease. First the good news. I love TRX. It is just what I was looking for in a new exercise tool. It uses muscles in a new and higher intensity  way in order to increase strength and endurance in the expectation (and hope) that this will get more control over PD symptoms. Yes, it’s too  early to reach this good news as a conclusion, but it feels that way. We’ll see.

Now the bad news. TRX is so good  at what it does that unless you are already in above average shape, you will have a tough time using it. Therefor, you will most likely not be able to take advantage of the main benefits of TRX because it may be too hard for most PD people. However, what you might be able to do is get fit and go beyond so that eventually you may be able to use TRX to your benefit. I don’t believe in limitations.

Based on how much better I felt after just a few weeks of higher intensity exercise in response to creeping Parkinson’s symptoms, I am more convinced that the strongest defense against Parkinson’s is a strong and fit body which comes from vigorous exercise.

If I knew that and I did not have PD, but knew that I could get it later in life, I hope that I would be diligent enough to get into, or stay in,  shape so I could put up a good resistance when and if Parkinson’s came knocking at my door.

Not to worry.  I promise I will never say I told you so. And I hope to never have reason to even think that. Take care of yourself. (I wonder what I would think if I didn’t have PD but just read this annoying blog. Should I apologize? If you think I should, then I do. If you don’t think it is necessary, then forget about it.)

No apologies for one of my favorite photos? Can you ID it?

In the grand scheme of life, tiredness is not all that bad for a Parkinson's disease symptom.

My body does not respond well to heat. What seems to happen is that whatever Parkinson’s disease symptoms, which pop up every once in a while, will amplify because of intense summer heat. The overriding symptom for me is a debilitating tiredness. But I know how to handle and make it disappear. This sensation is also a medicinal side effect of PD fighting drugs. Fact is I don’t need to know where symptoms or side effect comes from, just how do I manage around them if I want to experience a normal day. Of course, removing the heat by moving to Alaska would most likely reduce or eliminate the annoyance of tiredness or, putting it another way, a lack of energy. But my grandchildren don’t live in Alaska.

Strangely enough, it is exercise which uses energy that works to provide energy. I think the energy is  ready and waiting to be tapped. Exercise seems to stimulate the nerve paths from the brain to the muscles and the muscles provide feedback to the brain that says we are not really tired. It’s just the nerve message system that doesn’t work when it is hot.

Yesterday the hot and humid weather let up a bit and temps were in the  70’s. Not cool, but not as hot as last week. My sluggish muscles which apparently had not been working because of the heat, were working almost 100% normal. It was very clear that this symptom was gone yesterday because I had to walk to a dentist appointment and walking as fast as I could took 30 minutes. But I am not 100% sure that the slightly cooler temps were the reason. It was just a bit cooler; it wasn’t cool.

Over the last 4 days I had also changed my exercise routine to almost exclusively the TRX system. It is possible that the new and extremely intense system also contributed. There is no way to tell yet for sure.

There is possibly some good news and bad news. Good news could be that TRX works at a higher level of intensity for people like me who are still fit and strong enough to use it. The bad news is that it could be too strenuous for a lot of people who have to manage their Parkinson’s exercise program to their capabilities.

Need more time to evaluate the TRX system. One very positive that is important to me is the large number of balance improvement exercises available. I will focus on evaluating these for Parkinson’s people.

Photo is the church across Church Street from the World Trade Center site in New York City.