Lesson Learned

Read the last two blog entries so this one will make sense.

I am my own best doctor. Well, maybe not a licensed physician, but for sure the best option for my closest medical advisor... at least a key member of my medical team. I knew for years that whatever the doctors were prescribing for my neck pain did not work. Yet I deferred to the doctors' incompetent advice and did not insist on an MRI. I had the best information on the location, description, severity and initiators of the pain but allowed my doctors to impose their inaccurate diagnosis and followed their improper advice for pain management.

It never made sense to me. It still doesn't. The program that the doctors prescribed failed to work. They kept promising that it would. I knew it would not. I was right. They were wrong.

Lesson learned. Do not accept your doctor's diagnosis if you feel that it is wrong. Get a second or third opinion. Know your body; and the best way to get to know your body is to use it intensely. An exercise program accomplish this. Look at and feel your muscles. Test your strength. Observe your body. Know how it looks and feels. Take what you learn from this and use it. Because you are the most important member of your team, insist on doing what makes sense to you.

In my case, I underwent years of unnecessary pain and experienced several weeks I would not wish on anyone. (See my last two blogs.)

Yes. Lesson learned.

My life is back...

Through luck or divine intervention, I ended up at Hospital for Special Surgery in Dr. Todd Albert's office hoping that my pain in the neck was the source of my quasi-paralysis. Dr. Albert is chief of surgery and coincidentally, a former classmate of my wife's brother, also a doctor. There cannot be a more thorough screening of patients than that of HSS and Dr. Albert's staff must be the best of the best at HSS. That team zeroed in to my condition in one day and I was scheduled for spine surgery  two weeks from my first phone call to their office. Think of that response to something that had been undiagnosed by my other doctors for years.

The HSS surgery by Dr. Todd Albert repaired a "severe compression" of my spinal cord in my neck. That was three days ago and I am now free of those life-changing symptoms and quickly recovering from the knife. They say I have to take it slow for a couple of weeks. I did 60 minutes on my exercise bike this afternoon. It's pretty nice to have my life back. 

Nightmare in New York

Wow! So much has transpired since my last post just after it was decided that I would not yet benefit enough from deep brain surgery. Shortly after that, my body started acting bizarrely with sudden weakness and numbness in arms, legs and hands. Then it accelerated to partial paralysis, tingling sensation in my limbs and severe pain in my neck. And the last point gave me a clue that I hoped would be a clue to what was happening to me. I thought that my chronic neck pain was somehow related to the rest of my deterioration. That was my hope since the alternatives were probably not curable and the neck at least might be. I had been treating the neck pain with physical therapy and a epidural steroid shot at the advice of the doctors at a pain management doctor group. Very unfortunately, they failed to diagnose correctly which would have concluded that a severe compression of my spine in my neck was the source of the problem. All of this nightmare could have been avoided. They repeatedly told me that they could fix my neck pain with therapy despite the fact that I had tried therapy for over two years. Then again, they sell pain management services.

Next post will explain what happened next. 

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.