Time and a New Knee

Wow! Time got away me. What's that saying? Time flies when you are having fun? Yeah, right.

To update my blog readers, should there be any, my knee replacement surgery went according to plan with only one night at Hospital for Special Surgery. I was warned that it might be three nights because my Parkinson's disease might slow down or complicate my recovery. But I compensated for the PD by over-exercising for almost a month my legs and upper body to account for the weakness PD would attack with. So I was in decent shape (for someone 72) when I showed up at 5:30 AM for surgery at HSS on May 21. By the end of the next day, I was home. And no-one at HSS even mentioned Parkinson's because it didn't affect me at all. It is now four weeks since the surgery and after 2 weeks of home physical therapy three times a week, I am doing outpatient PT near my home in Forest Hills, NY. Comment from my physical therapist: You don't seem like you have Parkinson's at all, never mind having it for fifteen years. Believe me, I know I have Parkinson's. It affects every movement and every breath, but I continue to stay on top of this disease by exercising aggressively as much as I can. That, plus trying to get enough sleep and keeping up to date with my Parkinson's expert doctors and medications at Columbia University Hospital keeps me in a health condition that probably beats most 72 year-olds. It is certainly better than that a lot of younger people with truly scary health problems. And for this I am grateful.

Getting the knee replaced was a no brainer. It had gotten to the point that I was hindered with exercise and even just getting around. Not getting it done would have been giving up. I still have at least a couple of months of seriously hard work to recover my strength and agility, or get as much recovery as possible. But if you or someone you know is ever faced with a knee replacement decision, I would be happy to tell you whatever you want to know about my experience.

I'm looking forward to an active summer with family and friends that I have been missing. If you fall into that little group, I will see you soon!

Oh, I forgot to mention that having a passion for something is extremely important in anyone's world. It focuses your energy away from your health and provides reasons to connect with people. For me, it's photography. All this time devoted to a lousy knee has taken time from my photography. But it's still my passion. Here is proof. Don't be confused. It's a reflection in a puddle taken just before the surgery.

I will miss my knee. I don't plan to miss any exercise.

In order to continue telling like it is about having Parkinson's Disease, I have to update readers of this blog, if there are any, on something that I don't want to sound whiney about. It's not Parkinson's related but it affects my ability in the short term to fight PD. As you may recall, or maybe not, I manage PD by trying to keep my muscles in condition so that I can get them to respond when PD is telling them to ignore my commands. By forcing muscles and the nerve paths that send the commands to and from my brain and muscles to do what I tell them, I have built new paths and muscles. 

So far, it's working. The nerve paths and muscles must maintain their strength because I give them no choice. I exercise vigorously at least five days a week, but often seven days straight, for an average of 45 to 60 minutes, but often for 75 to 90 minutes. After 15 years of PD, I'm still able to do most activities expected of someone my age who has the benefit of their complete health. Without this program of mind over matter and never giving in, I would probably  be immobilized in front of a TV.

But my exercise is being threatened by a knee that is described as bone on bone. I tried to convince myself, and a couple of Hospital for Special Surgery doctors that it was just a partial tear of ligaments or some floating cartiledge. You know, no big deal. It turns out to be no such luck. 

So in 3 weeks I will enjoy the view overlooking the East River (which is not a river) for a couple of days and nights while the good doctors at HSS install a brand new shiney piece of metal and plastic and try to convince me that it is a knee. According to the docs, its long overdue. I blew it out playing football for a little engineering college in New England (WPI). So you do the math. That's 50 years of snow and water skiing, some long board surfing in California, some wind surfing in NJ, about 50 - 10K's a half marathon, a full marathon and hundreds of hours playing tennis, squash, racquet ball and golf. All of this on a knee with no cartilege and no ACL.

The old knee belongs in a museum and owes me nothing. I'll miss it just the same. I don't plan to miss any exercise. We'll see.

Cherry blossoms in Forest Hills, New York City.

Music, art, photography, gardens, family and friends

In today's NY Times there is an article by Oliver Sachs, the neurologist who wrote the book on which the movie Awakenings with Robbin Williams was based. Sacks died in 2015 but his work lives on, as do you and I. (I'm pretty sure that I'm still here. You?)

Musicophelia is another work by Sachs and which discusses how music affects people with Parkinson's disease. If you have Parkinson's disease, chances are you have grown a stronger appreciation and maybe even some skills in music, art,  writing or some other artistic pursuit. I've covered my experience with photography in this blog and I assure you this continues as an obsession that is now the heart of my daily existence. But I digress...

The  Times article describes Dr. Sachs' experience with his Parkinson's patients and their visits to gardens. Just taking a walk in a garden or garden environment has enabled Parkinson patients to overcome their symptoms while there. Music has had that affect on me at times. It's like the puzzle of my body is solved by the beat of the music. Coincidently, I live in a garden community that is more like a park than a New York City neighborhood, which it is. I love being outdoors this time of year. I'm going to test Dr. Sachs' findings. Could where you live affect how well you manage PD symptoms? 

Beyond the documented benefits explored by Dr. Sachs, I have an additional dimension that I continue to experience as having a positive affect on my life with this fucking disease. (Please allow me to express exactly how I feel.) And that is the affect some people have on my life. Family is part of it, but it goes beyond. And I am so very fortunate to have this benefit.

Photo  is a late morning fog lifting at Hudson Yards. 

Sleep as Though Your Life Depends on It. Because it does!

In my last blog, we noted lack of sleep as stress, and stress as a bad thing for anyone with or without Parkinson's. I did more reading about stress and its huge negative impact on our health. The book is Mind to Matter by Dawson Church. It is not easy reading because it is quite technical in its presentation. He wrote a second, short book that summarizes the findings reported in the main text if technical is not your thing. The main theme is the identification of electromagnetic waves, including those generated by our brains, as playing a major role in determining our health. (Stop yawning and keep reading.) There is a lot of documentation on how certain wavelengths that are associated with sleep are also effective as relieving stress that contributes to at least the symptoms and possibly even causes of all kinds of diseases including Alzheimer's, cancer and Parkinson's. Less stress, fewer and milder symptoms. Stress management is explained with specific programs in detail including EFT and Tapping. More about this stuff after I have more experience with it.

Deep sleep produces the best wavelengths to relieve stress. So if you want the easiest lazy man or woman program to resist PD, just find a way to sleep deeply and do it as often as you can. I'm not kidding. Do this as though your life depends on it. Because it does. In addition to EFT and Tapping, try CBD gummies and marijuana to relieve stress and promote deep sleep. This seems to be helping but I need more experience before endorsing it myself. Not that anyone gives a shit about what I endorse. But I don't believe everything I read, even when I write it. That may be because sometimes I write shit just to be funny that is hard to believe. But even taking that into account, you need to take sleep seriously. Seriously.

Say hi to my grandson, Nevan.

Sleep.

In continuing the last blog's train of thought, the next most important leg is getting the right amount of sleep. I don't know the medical reasons why sleep is so important, but there are doctors and other researchers who have spent their entire careers studying the science of sleep. (These people must be a riot at parties!) When it comes to sleep,nobody knows more than you and I do on what sleep or the lack thereof, means to a Parkinson's disease person. If I don't get enough sleep., I will not function. It's like the meds don't work. If I have a busy day planned, I know that it will not be a good day unless I get good sleep the night before.

This may also be true for people without PD, but I wouldn't know that now, would I? My guess is that Parkinson's amplifies the impact of a sleep deficit on a person. And its a matter of knowing your body and how it reacts to various stresses. Lack of sleep is a serious stress.

PD requires a certain amount of planning your schedule around sleep. I try to avoid multiple days on the go  by interspersing a day of rest at least every two or three days, or planning a shorter day for all the days on the go, like on vacation. I took the photo below the last time I visited Chicago. Can't wait to return soon.

Getting Your Tonsils Removed When You Need a Haircut

I'm back. I've been distracted by a gimpy knee which is getting better. I think. The knee doctor I visited did not want to listen to my evaluation. He was fixated on a knee replacement, but I think it is a partially torn LCL. Time may tell who is right. But I'm not doing a knee replacement unless I'm sure that's what is needed. That would be like having your tonsils removed because you need a haircut. Which leads into this blog topic.

There are four legs to most tables and chairs and to my program for resisting PD. In most tables and chairs, each leg is pretty much the same. In my program, the legs are very different. They consist of 1) Mental aka, frame of mind  2) Exercise 3) Medical (take your medicine) 4) Sleep (my favorite leg). Without using each leg, a person with PD will suffer more than they should and is gauranteed to lose the PD battle.  It's like a dog in a dog fight without any teeth. That dog will lose every fight.

The first and most important leg is the Mental aspect or the frame of mind. Parkinson's is a disease of the brain. The part of the brain that causes electrical impulses or messages from or to the brain does not work and the message system is shutting down. The same brain is still capable of helping itself fight back. But it takes an extraordinary amount of effort to get the brain to ignore its broken part and resist giving up. It requires an arrogant, in-your-face, chip on your shoulder approach to life. "Fuck everything. I'm not giving in."

Only with this frame of mind can one make use of the other three legs. Even a Parkinson's afflicted brain can produce powerful willpower to get up off that comfortable chair and get in some exercise to teach those weakened muscles to respond to new messages from new brain cells which we grow daily, whether we have PD or not. These new brain cells are there. Use them.

There are numerous medical studies going back more than 50 years and continuing today on the strength of the brain to use its untapped and poorly understood electrical energy to overcome illnesses. I'm not saying you can think your way to health, although some studies strongly imply that. But you can use your brain for a lot more than being a resting place for your hat.

I am reading Mind to Matter by Dawson Church. Somewhat technical but insightful to the power of the mind to create physical changes in our health.

A beach in the Hamptons...

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.