It works for me

I know that I am winning my battle with Parkinson's when, in any given day, I forget that I have this annoying little fucker hanging around and trying to get my attention. That's where I have been for a few days now. If I forget that I have it, then how bad can it be? But I think that the reason I can do this is that I have something stronger, more compelling, that is distracting me a lot more than the disease is capable of doing. Try it. For this to work, the key is to find something to absorb your being, your reason to exist, and then let yourself get lost in it. I now have several things that absorb me to this extent. In case you haven't noticed, one of these is physical fitness. Some people might think that physical fitness for someone with PD is an oxymoron. I don't mind (what I mean is I don't give a shit). I am obsessed with my fitness with unreasonable goals that any sane person will realize are unattainable. I appreciate those family and friends who allow me the space to obsess. Thank you.

Another totally consuming endeavor is photography. I have spent a lot of time trying to explain how this has been a life-long obsession. Given the right conditions, I can actually become a camera lens with the only thing I am aware of is taking the perfect picture. Ask my wife whose phone calls have gotten me out of my camera lens trance while wandering around the city more than once.

I have other things I disappear into and I am always looking for new things in which to bury myself. I am working on a music project now with a couple of people that is consuming and fun. You don't have to have Parkinson's to use a distraction as a way to beat a disease. And it might not work for everyone. Hell, it might not work for anyone. But it works for me.

I shot this photo in lower Manhattan while wandering around totally absorbed with the amazing images surrounding me.

No more diversions. Let's get obsessed again.

I doubt anyone has noticed, but I have been scarce when it comes to this blog. To those that find this blog useful, I apologize and promise to do better, or at least try harder. I hate excuses. I'd rather not dwell in poor performance, but things got crazy with my health for a little while. So, just to summarize the craziness, about four weeks ago, I had surgery on my spinal cord to relieve a compression that was causing pain and some paralysis symptoms, some of which were identical to Parkinson's. Over a three or four week period, I want from walking as I normally do (with a tiny little unsteadiness (old age?) but with full control and no cane or assistance) to literally dragging myself around with a walker. So blogging became something I put aside until things settled in or I took other action. The other action was spinal surgery. The pain is now gone and I am walking without a cane or any other assistance. I still feel that my legs need more strength and my balance still sucks a little. But I am back exercising 60 to 90 minutes a day and gaining all my strength, and then some, back. I am obsessed with this.

With PD, I have found that muscle mass and tone deteriorate rapidly if you do not push those muscles with intense, strenuous exercise. I monitor my muscle appearance as part of my program. If my muscles start shrinking or losing tone or get flabby, I double down on the exercises needed to rebuild those muscles. Don't get me wrong. I am no muscle head body builder. But paying attention to muscular shape is really important. A side benefit is psychological: if you look good in a mirror, it is proof that PD is not winning the war against your body because your muscles can't look good without you feeling good. Those who know me understand this obsession with the body. And you don't have to have PD to get obsessed. There are worse things in life.

My spinal surgeon is amazed at my recovery from his surgery in such a short time.  . He said he would not order physical therapy for my recovery because it might hold me back from my own program, which he said was perfect for me. He said he would not be able to improve on what I am doing and that I know my body best from my description of how I have managed to beat back Parkinson's.

This year is my 15th anniversary of Parkinson's. I still do whatever the hell I want and never let PD stop me from what I want to do (except when I was crawling around with a walker. Ha!). My recent health episode proves once again, you can fight Parkinson's and reverse it's annoying symptoms, even when those symptoms are not even Parkinson's. Ha!

Photo is a Hudson River Lighthouse from my Hudson Valley Collection.

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.