Safe at Home

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In March 2014, we rekindled the adventure we began ten years prior. My dad, with Parkinson’s, and me, with a camera or two, came together around baseball and went on a journey. In 2004, the journey was simpler to define: we road-tripped 20,000 miles in two months to see a game at each of the 30 MLB parks. In 2014, the initial idea was to do it again. Because of financial and physical limitations, we decided to pare the idea down to the six parks built since 2004. When the limitations became tighter on both fronts, we changed directions.

Dad broke through many walls this summer - most more metaphorical than this one.

My dad was signaling that he was giving up. The red flag for all of us ­­was dad’s lack of interest in golf and his admission that the pain in his back had become nearly debilitating. His doctors had told him there was nothing more they could do beyond prescribing more pain medicine. My mom was scared to the point she fell into another depression.

Dad plays with his grandson, Giuseppe.

Through searching for alternatives, a friend suggested I give Dr. DeMartino of Superior Health Solutions in Henderson, NV a call. We exchanged information, then discussed opportunities. He liked what he saw in our original documentary enough to offer my dad pro bono treatment at the clinic. He was confident he could relieve some of the pain and bring my dad to a greater degree of health. It wouldn’t be easy, though. Dad would have to come to Las Vegas for an extended period of time, estimated at two to three months. Dad said yes.

In late April, Dad said yes. I’ve been blogging about this process over the last three months in detail and there is more to come still. I want to cover the last day right now and a few thoughts on what the future holds.

One goal achieved. Next up.

Mom worked through her depression and came down to join my Dad in Las Vegas in early June. She went home for a brief period of time, then stayed for the last six weeks. Living conditions weren’t always the easiest or most comfortable for them in their extended stay hotel, but they managed. There were many ups and downs in the treatment. There was great skepticism at times and great hope at others. The constant physical sign of health was my dad’s weight loss through nutrition and supplementation. He lost nearly thirty pounds and reached his goal weight of 175 pounds in the final week. He displayed signs of increased health, vitality and enjoyment in his activity. He suggested social events and dates with my mom as opposed to holing up in a room and tuning out with television or his laptop. He said yes to road trips to Zion and Los Angeles. He braved a boxing ring, the Pacific Ocean and some water slides. He played with his grandkids. He emerged, three months later, a healthier man.

Dad plays with his granddaughter, Francesca.

For those looking for a cure to Parkinson’s here, I suggest you look elsewhere. It’s the wrong line of thinking as far as I’m concerned. As to whether or not those working on a cure for it will ever find one, that’s well beyond me. “Ever” is a long time. I have serious doubts about some, if not many, traditional western medical institutions, foundations and pharmaceutical manufacturers because their loyalties, in my examination of them, often following the dollar, seem to value that dollar or system that is supporting them long before the individual. I can say, with certainty, I believe in the power of the human body to heal itself. I believe it is doing exactly that on a daily, combatting much of the toxicity we introduce to it, both knowingly and unknowingly. I believe our bodies can be overwhelmed and that we do sometimes need help in evaluating our health, as we can easily become locked in our silos of self and blind to the things that we are in control of versus those we are not.

 

My Mom and Dad went home yesterday, July 31, 2014. My mom cleaned out the old food they had been eating and they both pledged to “protect their home” from unhealthy foods, recognizing their damaging effects back in June. My dad, who began his treatment with a 55-degree tilt in his spine and ended it with a 49-degree tilt, is committed to a more vigorous, physically active lifestyle. Dr. DeMartino repeatedly remarked how strong my dad’s body was, despite the PD or the massive curvature in his back. That encouragement, along with the weight loss and a renewed acceptance of himself as an athlete, has driven my dad forward.

Our journey is not over. We still hope to get to the six new ballparks built since 2004. We love our Oakland A’s and will cheer our lungs out for them to finally push through and not only get to but win a World Series for the first time in 25 years. Mom and Dad have much work to do, as do I. When will the film come to light? That’s beyond me right now. Too many questions. It will be seen at some point, when the time is right. I am working up my case for the next ask and I will write it soon. I hope you will join those who have already contributed to our mission, understanding, now more than ever, that we have proved the concepts we have put forth, worked diligently and professionally and are very worthy of your financial support.

The biggest difference between now and when we began in the early spring is the presence of hope. My Dad knows he can’t cure Parkinson’s, nor is he even remotely interested in seeking one out. That’s out of his control. He has quit looking. He is interested in making the most out what he has, Parkinson’s – not my Dad -- be damned. His body is much more willing than he previously thought and now so is his mind. The last action he took with Dr. DeMartino yesterday was to take a brief jog with him around the parking lot of DeMartino’s office. The idea of running again, something my dad identified very closely with for decades, was not on the list of hopes when we began this process. It emerged naturally through perseverance, saying yes and a happy accident. Look for Dan Cochrane jogging on a block near you, Walnut Creek, CA.

I am deeply proud of my parents for accepting their challenges head on and fighting back, for not listening to the naysayers, even professional and very well-educated ones, who told them they were on a fool’s errand. Contrary to popular, and I believe often well-meaning advice, “never quit” is not a philosophy I subscribe to. There is a time to quit – whether it’s a belief system, relationship, job or anything else dragging one down or causing you to lose focus. Holding on to too many things is far more dangerous and detrimental than quitting, reevaluating and harnessing one’s energy.

Mom says goodbye. Dad encourages her along.

The journey continues.

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Fighting for his life

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On Thursday morning, July17th, we headed on out on a road trip together for the first time in our follow-up documentary. We loaded up a pair of cars, as the new crew has four more fans, and went west from Las Vegas to Los Angeles. Our first stop was in Costa Mesa - near Huntingon Beach, for those who don’t know the lay of the land. I made contact with Anne Adams, a Rock Steady Boxing Coach, about a year ago after seeing their story on CBS Sunday Morning (http://www.cbsnews.com/pictures/fighting-parkinsons-with-boxing/). I asked if I could bring Dad in and video his efforts. She said yes.

Walking in the gym, we were a bit harried. A long morning drive, typical L.A./Orange traffic and an overtired screaming three year old added to the mix. I waved goodbye to my mom and wife with the kids fearing their return (“she screamed the whole time!!!” NOTE: She didn’t. Whew.). I walked into the gym with my dad and he said, “So what are we doing here?” I almost wanted to punch him. I had told him several times. We drove five hours for this. And now he wants to know what we’re doing? Thankfully, my dad being my dad, he rolled with it. More than that, he steamrolled it. He got in, was introduced around by the incredibly kind Adams, then got his hands wrapped up.

Dad told me a story the day before about his previous boxing experience – about 50  years prior. As the story goes, he boxed in high school and bloodied his best friends nose. They’re still friends in case you’re wondering. He also was involved in some kind of early fight club in college, though I couldn’t get much more out of him than that. At any rate, dad had swung his fists before, so I was looking forward to the show.

He got the gloves on and was taken straight to the ring. The group of athletes (“They are not patients,” Adams said. “They are athletes”) had warmed up and I could tell by my dad’s smile he was feeling good. There were three other athletes in the ring with him. For a minute I wondered if he wasn’t being thrown into a Parkinson’s Boxing Battle Royale. Dad didn’t look worried. The trainer took the athletes one by one into the middle of the ring for two minutes of training. The gloves the athletes wore weighed 16 ounces. The punches they threw were real. The combination of punches called out by the trainer were followed and leather popped, with footwork connecting to each throw, the mind finding the body.

I teared up as I watched my dad take his turn not once, not twice, but three times. Each time he seemed to get better, more coordinated and smiling bigger. He straightened up and came alive in the ring. Several athletes and onlookers said, “Is this his first time? He looks great.” At the end of his third round, he threw his hands in the air a la Rocky.

The class went on with other boxing and footwork drills after the ring. They stretched out at the end, then stood in front of a mirror and addressed themselves positively, affirmatively. My dad doesn’t look in the mirror much – he says he’s not sure what that guy looks like at any given time and that gives him some of his hesitation. I think he doesn’t want to accept some of what that guy looks like because it doesn’t match the guy in his mind. Last in the line of athletes, my dad heard what the other athletes had to say before him. Several of them said they were inspired by watching my dad as part of their own affirmation and experience of the workout. Dad said his peace to himself, then was reminded by Anne to tell himself he loves the guy in the mirror. “I love you,” Dad said to himself.

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99.6 percent failure

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That failure rate relates to the efficacy of drugs developed for Alzheimers over the past decade (Source). Please go back and read that again.

99.6 percent failure rate (in case you didn't go back). In baseball terms, that's batting .004. Ahem…"you're out".

I've seen this failure up close and personally in my dad dealing with his Parkinson's, which is not the same as Alzheimer's, of course, but has the relation of being understood (?) as a neurological condition. Parkinson's was often referred to as a "wedge disease" back in 2004 because people felt if they could find a cure for it (and many people we spoke to sounded very optimistic back then), then it would serve as a wedge into our understanding of the brain. The accrued knowledge, the argument went, could be used to help understand and cure other neurological ailments.

My dad has been told by his doctors at Kaiser Permanente, undoubtedly skilled, learned and thoughtful as they are, that his only choices for treatment at this point are more medications and surgery (though he was ruled out as a candidate for deep-brain stimulation - not that he would have elected to have it as he abhors the thought of a drill to his skull. Weird dude, eh?). What is the effect of that information on a patient? For my dad, it was depression and a loss of hope. What is one supposed to do if the people they trust the most, who supposedly know the most about their condition, tell them "there's nothing more we can do"?

This brings me back to my question: what do we, as a species, really know in matters of the brain? One of the most frustrating quotes I ever heard in this regard was from my dad's first neurologist, a man named Dr. Kevin Sawchuk. He told my dad, "We may not know everything about Parkinson's, but we know a lot". The logical fallacy there is stifling. To put a fine point on it in case I'm being obtuse, how can one claim to know any quantifiable amount of a thing if he admits he doesn't know it all? You must know the value of X in order to determine a percentage of X. Dr. Sawchuk also told my dad he could be in a wheelchair in six months or thirty years. On a funnier note, my dad has the stated goal of doing an Irish Jig on Dr. Sawchuk's desk to prove him wrong (I'll be sure to roll video on that).

Thankfully, by many accounts I've read recently (a few links here and here), many more humble people seem to agree we're just scratching the surface of the grey area. We don't know what harm or benefit we're doing to this most vital and brilliant organ with our fast-paced modern society, reliance on technology and increasing toxic levels in our environment. All of this fits within the mantra of not treating the symptom, but rather the patient. And when you talk about treating the patient, the environment that patient lives in, the relationships he has and the behavior he engages in all factor in.

All of this is not just to throw a lot material at the wall for the sake of making noise. Rather, it's to engage in and encourage the possibility of looking at and respecting all of the factors that go into our health, particularly when we look for something as complex as a cure for something that effects something as brilliant as our brain. How can we not when top scientists are returning with 99.6 percent failure rates?

My diagnosis? Keep swinging - just allow a few different-minded people to the plate for a few cuts.

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Prison Freedom

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“Being told I have to change my diet feels like a prison sentence”, the man complained

“I understand how you could look at it that way,” the master replied. “But the nice thing about this sentence is that you get to write it.”

“Yeah, but I don’t get to choose a lot of the words I’d like to write it with,” the man said.

“Perhaps you’ve been a bit too wordy,” the master said.

Back in 2004, we were held for several minutes in this
brutal Montreal prison/parking garage after hitting a sign with our car
on the way in. Then we were forced to watch the Expos play in Olympic Stadium.

I like that story a lot because it cuts to an important point I’ve felt about health for a long time: ultimate freedom is making us sick. What do I mean by ultimate freedom? Eating as much of whatever we want whenever we want. Eating for the satisfaction of our mouth over the health effect it has on our body and mind. In the American culture, freedom is prized and cherished. In comparison to living in an oppressive state, like North Korea (unless you’re Dennis Rodman or part of the Kim clan), I suppose that argument holds water. But the fallacy lies as it does with all straw man logic, the lack of one thing does not necessitate the other. In other words, having less options for food does not mean you have to be miserable. You can certainly choose to be miserable by focusing on what you lose or you can look at the very tangible things you gain. And I encourage you to look the gains and losses side by side:

LOSE	GAIN
Fried food Sugar Weight Salt	Energy Clear thought Mobility and Participation Confidence

And the list goes on.

My dad is down to 178 today – just three pounds off his goal weight of 175. That’s well over 20 pounds in the five weeks he’s been doing his gluten/sugar free diet. People have asked if he’s miserable. He’d tell you no. And he’s a man who’s been known for a fierce sweet tooth for sometime. He admitted early in the process that he believes he began to eat a lot of sugar when he gave up drinking about ten years ago. He’s certainly felt the pain of that progression and his insulin levels and pancreatic health were on the top of the list of Dr. DeMartino’s concerns when he saw my dad’s blood work. The weight is the visible symptom, but it doesn’t give the information on what’s going on beneath the surface. My dad was inching toward diabetes. That would be a fun one to add to Parkinson’s.

Food is not the whole story or key to wellness, but it’s a significant part of health for everyone, including those with Parkinson’s as we have learned this summer.

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Retraining the membrane...Retraining the brain!

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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.

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