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.