Friday, June 27, 2014

Retraining the membrane...Retraining the brain!

The Boys of Summer roll along, but we need your help to complete this year's journey. Please see our site for the latest on how to contribute. Thank you!

July 26, 2014

I have missed a few of my dad's sessions this week due to, well, life. As you may have heard, "we plan, God laughs". Dr. DeMartino sent me this picture from the session on Wednesday.

As you can see my dad's back looks remarkably straighter than it has previously. Now, before people throw their hands in the air and shout Hallelujah!, this is only a start -- but a significant one. My dad is sitting in that picture. When he stands, he almost immediately goes back to the significant tilt many of us know and sympathetically dislike. Like most things, this doesn't mean "it's working" or "it's not working". It means baby steps are in place. That my dad can sit like this at all is significant. That he doesn't feel the need to strain as he does so, in fact feels very good, is very positive. There are other physical components, including retraining the hips and upper legs that needs to be done. But the training isn't just physical, and this is where it gets particularly fascinating to me.

I've written about proprioception before here, but I want to take it a bit further. According to Sajid Surve, DO, "Proprioception allows humans to control their limbs without directly looking at them. Take, for example, the complex task of driving. We are able to keep our eyes on the road and simultaneously adjust our arms and hands on the steering wheel, and apply the appropriate amount of pressure to the pedals to maintain speed." This takes the idea beyond just the brain - which is where the organs, muscles and nervous system as a whole come into play. The path those messages take are the spinal cord. For a fun further demonstration of the nervous system, please allow the good people of Schoolhouse Rock to demonstrate.

Like most things in our body, "use it or lose it" applies. Disease and injuries affect the body's effective use of this symptom and the number one risk for patients, particularly the elderly, is falling. Dr. DeMartino has discussed this and has worked with my dad on gait training, basically re-associating himself with how he walks. Over the years my dad has naturally compensated for the messages that weren't being delivered across his body due to the loss of dopamine. Dopamine is a neurotransmitter that helps send the signals. It's a cardinal sign of Parkinson's when dopamine is lacking or not being produced at proper levels in the body.

The bottom line for my dad is his journey continues. The overwhelmingly positive thing about all his therapy with Dr. DeMartino is that he has things to work on. He has active engagement in his health and knows there are things, daily, he is responsible to do that will make a significant difference in his life. Treating a patient this way, empowering him with responsibility and assuring him of his body's unique power over the doctor's magical wand (via pill or scalpel) is encouraging to see. The body is not a dumb piece of meat. We need to respect it, understand the environment it exists in and how all of those elements affect us, body, mind and spirit.

June 26 - comparing sitting...

and standing.
The Boys of Summer roll along, but we need your help to complete this year's journey. Please see our site for the latest on how to contribute. Thank you!

Tuesday, June 24, 2014

End Game

This blog continues its path, sharing the inside details of the follow up to the award-winning documentary, "Boys of Summer". For more details, to watch the film or contribute to the sequel, please click here.

As we enter week eight of my dad's therapy under the skilled eyes and hands of Dr. DeMartino, here is the latest:

* Dad has lost 17 pounds (eating gluten-free and sugar free).
* Dad is a bit straighter, though this process is very much in play right now as the weeks leading up to this point were about getting his body healthy to receive this stage of the treatment.
* Dad would like more energy - he still feels tired.
* Several tests, including blood and urine, with definitive markers and scientific numbers will be taken in the next couple of weeks.

To that end, we are near the end of this phase. We don't have an exact out date for dad, but a good guess would be the end of July. My mom will be returning tomorrow and will be staying for a few weeks. There appear to be a few doctors in the bay with similar modalities to Dr. DeMartino who dad can continue his therapy with.

We need to make our way to Los Angeles in the next couple of weeks for a few things:
*Interview Dr. George Gonzalez, inventor of Quantum Neurology (one of Dr. DeMartino's highest recommendations for us).
*Interview Rob Belushi, a good friend and former instructor of mine at Second City about the value of comedy in health/life.
*Take dad to a gym that specializes in Parkinsonians boxing. I want to challenge my dad to keep fighting hard for his health and life - boxing is a great metaphor for that.
*See the coast. Get in the water. The ocean heals.

Who knows? Maybe we can even take in a game at Dodger or Angel Stadium.

Our story (go to about one minute in to see our mention) played on the local Las Vegas NBC affiliate last week in celebration of our ten year anniversary. The reporter, Amber Dixon, liked it enough to follow up last night with a few questions.

Or maybe she just liked Giuseppe that much - he's quite the charmer. He says he wants to be a reporter. She'll be cutting a longer piece that should make its way to air on Sunday night - I'll post it here when it's up.

So what happens after dad is done with treatment? Are we done? I hope not. We still need to get to the six new ballparks built since 2004 plus return to the Field of Dreams. If you'd like to help us get there, please visit our site to donate. Thank you. 

Friday, June 20, 2014

Happy 10-year Anniversary to us

This blog continues its path, sharing the inside details of the follow up to the award-winning documentary, "Boys of Summer". For more details, to watch the film or contribute to the sequel, please click here.

Ten years ago, my dad and me began an amazing journey to visit all 30 Major League Baseball parks over the course of a wild, stressful and hellaciously fun two month road trip. We began in Las Vegas, where I lived then and still live now (though the digs have improved considerably). We visited our one and only AAA park at Cashman Field, home of the 51's (who were the Dodgers affiliate then, before they became the Blue Jays and are now the Mets). They still have Cosmo and they're still at Cashman.

Tonight we head to Cashman to mark this event with another game. We'll be hanging out with our friends at Zappos before the game, because my lovely wife is awesome enough to work there. We're also going to be interviewed by the local NBC TV affiliate about our story. I'll post the clip here as soon as it goes up. But for those who can't wait, watch the 10/11 o'clock newscasts. If they like the story enough, they'll tease it out to tomorrow, too.

Annamaria was looking at some of the video from ten years ago and was shocked at how different my dad looks. Truth is, ten years does a number on all of us. I can't suppose wiser, but I can say older with authority. How to measure love? Time, effort, desire, emotion -- have fun with it. I can't define it. I can point toward it and say for sure that I loved that time with my dad, not because it was "all good" -- it wasn't. But we were both all in. We were in tight quarters. We had tight deadlines. We had a definite plan, a very finite budget and means enough to make it happen. We made it happen. I love that. I'm proud of that.

Ten years ago, as we sat in Cashman field, I asked my dad what he thought about baseball. He said, "This is a night for it - perfect night for it. Hot, dry summer night - very comfortable. A beer in my stomach, and a sub sandwich there with it. Not bad. All I need is four aces and a couple hundred dollars on a poker table. But that ain't gonna happen." Just then, the crack of the bat called us all to attention. A home run for the home team.

I look forward to throwing the ball back and forth with my dad a few times tonight. Catch defined much of who we were on that trip. Even when there weren't words, we were still communicating -- sometimes even better. 

Wednesday, June 11, 2014

My dad is twisted

Warning: today's post has a few R-rated words. 

This blog continues its path, sharing the inside details of the follow up to the award-winning 
documentary, "Boys of Summer". For more details, to watch the film or contribute to the sequel,
please click here.

For those who know my dad, this isn't new information. Whether literally (as his back now tilts at a 55 degree angle, therefore causing his lower spine to twist to attempt to compensate since his upper spine hasn't tilted back like it has for most with scoliosis), or figuratively in his joke-telling. Let's go with the joke-telling first as that's a bit more fun.

Ten years ago, when we made our epic Boys of Summer baseball journey, the running joke (more of saying really) in moments of surprise from my dad was "I've been to three county fairs and a goat fuck and I ain't seen nothin' like this." Charming, right? The joke this time is much more poop-directed. As my dad says, "I've got a lot of shit in my life". Now before you think my dad as a sailor with a paritcularly heavy blue streak, one of the elements of humor is in surprise - he's quiet. So when he sneaks in a one-liner, he almost always delivers.

So here's the 2014 running joke: A guy back in the 1950's named Charlie had a special talent - he could whistle zippedy-do-da out of his ass hole. He was mostly small time as he had accepted this level of talent would only take him so far. Well, lo and behold. one day the Ed Sullivan show came calling. Charlie got on the show. Ed Sullivan calls him out on the stage. Charlie promptly dropped his pants, then dropped a big turd on the stage. He got the hook. Ed grabbed Charlie and said "What the hell do you think you're doing?!" Charlie said, "Geez, can't a guy clear his throat?"

I'll wait...

Today Dr. DeMartino went over the results of the x-ray he took of my dad's back yesterday. My dad's number one complaint (and he rarely complains) is that the pain from the severe tilt in his back, keeps him from doing what he wants to do (e.g. golf), draws unwanted attention (pretty much any attention), and scares him in regard to the long-standing wheel chair prognosis given to him at his first meeting with his first Neurologist back in the summer of 2001.

Dr. DeMartino said that my dad's tilt, at 55 degrees, is one of the most severe he's ever seen. That's both comforting and unnerving. What's more on the comforting side, however, is that Dr. DeMartino feels he'll be able to somewhat correct the tilt. He does not think dad will be straight again. He's said this from the beginning, so that's no surprise. But, Dr. D. continues, every degree of straightening will offer significant relief. This is a multifaceted process. There very well may be scar tissue in the way. That will be broken down, but Dr. D. (wisely, in my opinion) insists this must be done slowly. He also says there will need to be regeneration. That can be aided by microcurrent and light therapies. As science fiction as the therapies as the ideas might seem, we shouldn't be nearly as in awe of the idea of regeneration as we seem to be. We've been doing it since we've been a species. The thing is we haven't looked close enough to understand it. Our bodies regenerate cells, tissue and muscle all the time. We have to get out of the way of our bodies in order for this to occur at the highest level. One of the best ways to get out of the way? Stop directly putting in things (eating, drinking and unnecessary pharmaceuticals) that gum up the process. Having an effect doesn't necessarily equate to understanding that effect on its whole level. Here's what we do know, but don't necessarily believe: the body is not a dumb piece of meat. It is active. It is vibrant. It is living and responds to everything we do to it (via omission and commission). My dad's health is living proof of the dynamics the body is capable of. My mom, who has been down here for the past two weeks and at all of the appointments, is in awe of Dr. D. and is convinced of the progress she's seen in my dad in terms of his level of engagement, presence and energy. It's worth noting he's sleeping very well (something he's struggled with for many years) and hasn't taken a sleeping pill since he's begun this work.

So now we begin the process of straightening out some of that twist. But don't worry, my dad will still undoubtedly talk about goat fucks and tell shit jokes. That's just who he is.




Tuesday, June 10, 2014

Taking responsibility

This blog continues its path, sharing the inside details of the follow up to the award-winning documentary, "Boys of Summer". For more details, to watch the film or contribute to the sequel, please click here.


“God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And wisdom to know the difference.”

The more often I come back to that prayer, the more interesting, impressive and vexing it is. Within health, we all must take responsibility for ourselves. Health, as discussed many times before on these pages and thousands of others, is a slippery term to say the least. I asked my dad today what he’s taken responsibility for and what he hasn’t within his Parkinson’s Disease. At first, he thought he’d done pretty well with it. When I asked him to expand on what that meant or offer specific examples, he was slow to the draw. My mom, sitting off-frame from the camera shot I’d arranged of my dad and me, whispered in full voice: “working out!” It was one of those moments where we needed at least one more camera to capture the beautiful, unstoppable force that is Paulette Cochrane when it comes to conversations. My dad stared at her for a few moments, then deadpanned, “My wife thinks I do a good job working out.”

He went on to acknowledge that he doesn’t speak up as well as he could. I asked him if that went beyond the literal volume of his voice to asking for help. He said that was probably true. My dad’s a proud man. He doesn’t want special attention. He’s hesitant to use his walking sticks even though they help because he loses the use of his hands to carry things. This is going to continue to be a struggle as naturally, Parkinson’s or no Parkinson’s, he’s getting older. He turns 70 in a week. That’s a big number. He’s going to have to be responsible for that, as are we all. Health is communal whether we want it to be or not.

In baseball terms, there was a “big” incident last weekend (or series of incidents) involving a player from the Baltimore Orioles named Manny Machado. I bring this up to tie back to baseball, something I always want to do as it’s part of our foundation in the Boys of Summer journey and as his behavior is a perfect example of not taking responsibility. In brief, Machado is a talented young third basemen who is back from a severe knee injury that he’s apparently still sensitive about. On a rather routine ground ball to Oakland A’s third basemen Josh Donaldson, Machado ran from second on contact, figuring Donaldson would go to first base for the third and final out. Seeing easy pickings, Donaldson did the less traditional thing and tagged out Machado. Machado tried to dance out of the way and in so doing, tripped, fell on his rear and looked foolish. He took offense to Donaldson’s untraditional play and let him know. Silly, but no big deal. The problem is, cooler heads did not prevail. Responsibility, which started and ended solely with Machado, was never taken. The incident, therefore spiraled, due in part to baseball’s oft-written about unwritten rules, leading to pitchers throwing at batters, Machado hitting A’s catcher Derek Norris with a pair of long back swings and then losing control of his bat and hurtling it all the way up the third baseline. All because of a lack of taking responsibility.

There’s a metaphor in Machado’s lack of maturity – and it’s not just that he’s young. Machado’s actions and subsequent lack of genuine apology (capped by his appeal to a suspension) are representative of individuals and organizations who don’t take responsibility for themselves. We all pay the price for this. But where to draw that line? Oh the vexing serenity prayer.

So it goes with my dad. I offered my frustration that he hadn’t put more emphasis into meditation, even with all of the logical (the greatest appeal method to him) information I’ve offered him on how it could positively affect his Parkinson’s. He acknowledged the validity of my argument and that was it. And so the wisdom says to me I’ve done my part, he knows as much as he needs to know and he will do with it what he will. I’m not a doctor. But even within the ranks of doctors there is plenty of room for question of intent. What is a doctor? Dr. DeMartino openly questions doctors who are unwilling to change in the face of overwhelming evidence that new (or new/old) treatments work for patients. He finds pharmaceutical companies criminal for not being held responsible for the number of deaths they cause in America (fourth highest cause of death according to this Harvard article). He mentioned a Chinese doctor being executed by its government for being responsible for five deaths due to pharmaceutical mistakes. Is that too much? Where’s the line? What’s the value of a human life in the face of some of the largest profits in the world?

When it comes to responsibility with health, I believe we all must acknowledge we are at once individually responsible and societally affective. Have fun with that.   

Monday, June 9, 2014

It's gotta be the food, money.

This blog continues its path, sharing the inside details of the follow up to the award-winning documentary, "Boys of Summer". For more details, to watch the film or contribute to the sequel, please click here.

Back in the late 1980's, Spike Lee unleashed Mars Blackmon on the world with the help of Nike and Michael Jordan. Those following Lee knew Mars from the cult classic, "She's Gotta Have It". But Mars never had it like this. With his signature catch phrase, "It's gotta be the shoes," Air Jordans flew off the shelf to the point of deep controversy, even, tragically, murder. The point here is not the shoes, but rather the catch phrase and the mania it helped drive. What if people thought this way about food?

Part of my dad's treatment with Dr. DeMartino has been to go gluten free, organic and eat no processed/refined sugar. Now this isn't all he's doing - not by a long shot. But it's clear the diet has had a profound impact on my dad in many ways. He's lost weight - which is important as he felt about 20 pounds over what he wanted to be - and his energy and general interest in social and personal activities is up. His pain level is lower - though still prevalent. And the biggest advocate of what he's doing is the woman who knows him best, my mom, his wife of nearly 48 years.

In talking about the importance of this today, my dad openly questioned: "Why haven't any of my other doctors suggested a diet like this?" The traditional answer is that doctors aren't taught much nutrition in med school. There are articles that seem to back that idea up. There are also doctors that take offense to that comment and have fired back. Whatever "the truth" is, a slippery idea at best, it's fair to say that, based on the food that is eaten the most, subsidized the most, is the cheapest, the most highly processed and designed to taste unfairly delicious to your mouth, nutrition is undervalued in our society as a whole.

"It's criminal," my dad continued.

We had an interesting conversation about what it's been like for him to lay off sweets, especially as that has been his nemesis for some time. We've had a few birthdays over the weekend so cake and ice cream have been aplenty, along with other such niceties as chips and fried foods. It all tastes great. No debate there. But the price one pays at a cellular level is not often considered. People will joke about getting or being fat and maybe can even get to a place of peace being that in their own lives. But as to how things happen on a cellular level, most of us don't have a clue. Should you feel like going there, here are a few articles to nosh on (one, two, three).

Tomorrow dad will have an x-ray and Dr. DeMartino will begin to see how he can affect the curvature of my dad's spine - his "tilt" as we call it.

Tuesday, June 3, 2014

You've got to have faith...or do you?


After our meeting with Dr. DeMartino today, my mom, dad and I talked about faith. Faith comes in a lot of different colors, shapes and sizes. The degree to which one has faith and in what are interesting considerations. Ten years ago, as we began the journey of the original “Boys of Summer”, I asked my dad what faith was. He said, “Faith means that I believe I have what it takes to get the job done”. That definition speaks toward faith in himself. His body has failed him to various degrees over the last ten years. Some of it is just getting older as he looks at 70 on the fast-approaching horizon; much more of it, I believe, is due to Parkinson’s Disease. Being robbed of something that you hold faith in has to shake you.
 
My dad doesn’t hold much interest in religion. He was raised Catholic and, along with my mom, raised my sister and me as Catholics. When my mom left the church, somewhere in the 1990’s, my dad left it, too. My mom says she continued to question and develop a new faith toward God and Jesus Christ as she needs to understand that. She goes to church again, today, with great passion and faith, though it’s not Catholic. My dad still doesn’t go and doesn’t seem to have any interest in it. I left the church when I went away to college. I still remember taking a mythology class and having my mind blown by the stories from other cultures, some similar, some not to the Catholic faith, many of them predating the teachings in the Bible by thousands of years. This revelation, alone, isn’t to say one is more correct than the other because of that information, but because the faith was presented to me as a closed system, with other belief systems being unquestionably wrong, this was earth-shattering to me at the time. Just recently I began to go to church again, largely for my children and my family. I’ve been enjoying it quite a bit.
  
Back to my dad and his faith: the other night we went to the Zen Center in Las Vegas. I’ve suggested my dad should incorporate meditation into his life for a number of healthful and quality of life reasons. There are an increasing number of scientific studies that point to the validity of meditation as an exercise that increases brain activity. As my dad is dealing squarely with a neurologically-based disease, so far as we understand, meditation seems like a good fit.

At the Zen Center, my dad asked the Zen Master, “If I commit seriously to meditation, what can I expect to get out of it?” Whether or not my dad knew it, he’d stepped right into a zen trap. It is in the wanting of anything that one gets lost. The Zen Master brought up the metaphor of the mind being a glass of dirty water. Through the process of meditation, one can help the sand and dirt settle to the bottom of the glass, adding clarity to the water. One cannot remove the sand itself. How can one do this? How does one know meditation “works”? It is in the doing. As my dad is a logically-minded person, this didn’t sit well with him. I offered to send him some of the science-based articles on meditation to see if they would offer him encouragement or peace of mind to continue on this unknown path, in the absence of faith. He said yes. In case you’re interested, those articles can be found here.