Boys of Summer Book - Entry #163

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

April 1, 2007 - Bob
Las Vegas, NV

Annamaria and I have moved back to Las Vegas. In a way, this is “full circle”. It was very hard leaving the Bay Area, my friends, co-workers and my parents. Living with them for 18 months was such a gift. It was not our intention to stay with them that long, but life, for numerous reasons seemed to encourage us that way.

I had many feelings about living with them:

*The joy and friendship of dinners, movies or walks together.
*The sadness of seeing the ups and down in mom’s health particularly at such close range.
*The admiration of watching dad manage his PD in different ways.
*The strangeness of simply being that close to my parents as an adult, with a wife, no less. What did that say about me? There was guilt, as if I must be a failure to be living with them. There was also the reminder that what Annamaria and I were doing was helping from the ground level.

Ultimately, there was disappointment in simply not being able to afford a house in the Bay Area. We’re in a large group there, so I know I shouldn’t feel too bad. A house of the same size and with far more amenities is about half the price out in Las Vegas. Annamaria’s family lives out here and this is a place where Annamaria and I met and have had success in.

How will my parents be? They’ll be as they are supposed to, as well and conciously as they treat each other and themselves. I know Annamaria and I can only do so much. What my parents will do with their lives and how they will manage their illnesses is ultimately up to them. I don’t need to live with them to support them. I also know that part of the support I can offer is living a happy life with my beautiful new wife.

They’ve got a tremendous support system of friends, family and medical staff up there. And if anything really goes crazy, I’m only an hour flight away. I have to get on with my life and my family now. I’m a married man. Annamaria and I are (gulp) talking about kids of our own. That’s a little way off, but with a wife and a house, that “next question” is being asked with greater and greater frequency...

I think about taking my kids to their first ballgame. Tears well up just thinking about it. I’ll buy my child a snack. (FYI: I use “my child/kid” etc. because it doesn’t matter if we have a boy or a girl, they’re getting the game experience! Matter of fact, if my wife has her way, we’ll have twins.) I’ll make sure my child has the appropriate hat and jersey on (I really hope the kid’s first game is an A’s game...I’ll probably have the little one in A’s gear regardless of where it takes place). We’ll cheer, we’ll dance, we’ll sing “take me out to the ballgame”. I’ll teach my child very small things because I don’t want the experience to be a lecture...but understanding why the batter bunted or why an intentional walk was issued isn’t that hard to explain. And I’ll probably have to carry my child back out to the car because he or she will have fallen asleep by the time the game is over.

I hope my dad is with me at this game. And I hope they’ll have found a cure for Parkinson Disease by then so when my kids ask, “What were you guys talking about in the “Boys of Summer” movie?” I can tell them: hope and baseball.
 

Boys of Summer Book - Entry #162

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Feb. 20, 2007 - Paulette

Walnut Creek, CA

I’m looking back. There are things I wish I knew then what I know now so I could handle them differently. But I don’t blame myself. I would have been more encouraging. I think dad felt guilty. I wish he wouldn’t have -- that he could have gone with a freer heart. But it wasn’t so -- that’s just the way it was.

I’m thrilled with what the trip did for Bob’s and Dan’s relationship. Bob worked so darn hard -- I don’t know how much he enjoyed it.

They do have the memories. Jumping in the ocean, the Field of Dreams -- it was amazing. At the Auters, the Payzants, with Naiden -- all the opportunities and the people you met. You can’t put words to it. I am so grateful.

Had Christine said “mom I want to do this journey with you”, I’m sure I would have gone. I didn’t feel left out. If I wanted to go on the whole trip I could have. There were responsibilities at home.

Just to see the power of this film and the good that it has done and will do...it’s hope, it’s relationship. Yeah, dad’s got Parkinson’s Disease, but he isn’t Parkinson’s Disease, he’s a man who’s got Parkinson’s Disease. Like me, I’m a person who’s got bipolar but I live. I enjoy life. Before I was waiting for the next shoe to fall. I was feeling not in control in my life. I’m not saying I’ll never have an episode again. That happens -- life goes on, things happen. But right now things are good. I want to get ready for life -- living one day at a time. I can be prepared by working my program.

Boys of Summer Book - Entry #161

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

July 9, 2006 - Bob
Walnut Creek, CA

Some ups, some downs...

We didn’t get the New York Post article as we had hoped. They loved our story, but were looking for something a little more local. Easy enough to understand as we’re on the left coast and all.

The good: the Oprah Winfrey show has expressed interest. I’ve long felt we’d be a perfect fit. The producer who contacted me said they keep projects on file to see if they fit with any of their upcoming shows. There’s no guarantee this does anything but put us into what I’m sure is a very big vault, but hey, it’s Oprah’s big vault. Here’s to hoping.
August 1, 2006 - Mom
Walnut Creek, CA

The difference in therapy now and then, is huge. I feel like I’m on a road -- it’s a good path. Before it was like a report card -- 1/2 hour and goodbye. This is working. Our therapist is working with us, helping us to work directionally.

I came from a place of fear with Kaiser. What I learned at the  clinic (in Seattle) was I don’t need to be afraid. It was having dad with me, that he was learning right along with me, that love and support that he showed was absolutely incredible.

The staff there were just so direct. They made me look at the disease, take responsibility. Giving me the actual tools was just amazing to me. It definitely empowered me. It’s a lifelong process. It’s like having diabetes -- you are never going to get rid of it. But you can manage it by your insulin (medication) and through behavior modification. Here are the tools. Each of us had particular behavior modifications for each of our temperaments, personalities and behaviors. It was specific to each of us -- not generic. I wasn’t categorized. I was dealt with as a PERSON, not a disease.

The spiritual aspect was huge to me. It was an important level to connect to. It wasn’t thrown in my face. It wasn’t fundamental or judgmental. It was comforting, informative and still challenging... but it was in a way that I like. It spoke to me.

 

Boys of Summer Book - Entry #160

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

June 30, 2006 - Bob

Walnut Creek, CA

Mom and dad have enrolled in a program in Seattle for them both to get more understanding about her bipolar. I’m so proud that mom’s brave enough to go to it and through it. I also admire my dad for standing by her to encourage, support and sometimes offer the bits of information my mom’s disease would rather leave in the dark. There is that odd distinction that I’ve come to accept with chronic diseases like Parkinson’s and bipolar: they are both part of us and separate from us. When we “have” them or are afflicted by them, they do become part of us. They can, in fact, overtake us and become us. We must fight daily, hourly, minute-by-minute to manage them.

Therein lies the rub: “manage” not “cure”. Some things, at least as far anyone I know understands them right now, are not curable. That’s a very contradictory thought for a people and a culture here in the U.S., in particular, that often believes it can accomplish anything, cure everything and defeat anyone.

Diseases like these are like a full plate of humility served cold. Victory, in the classic sense (i.e. annihilation, surrender) is not an option. Management is the only thing on the table.

Diseases thrive in dark, stagnant areas devoid of life, light and circulation. In the light, where they must be dealt with and where those with experience, training and compassion can help is where we can all learn to manage our difficulties, whatever they are.

It’s scary, exposing one’s self to the light. What will people think about me? What does this say about who I think I am and how I present myself? What if no one loves me? What if I am weak? What if I am worthless? What if I am a fake, a fraud, a fool?

I look forward to seeing my parents and sharing this new segment of their adventure with them.

Boys of Summer Book - Entry #159

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Interview with Dr. Shill at the Muhammad Ali Parkinson's Research Center

part IV

RC:
Can the disease be handled more effectively if a patient is diagnosed sooner than later?

DS:
Right now we don’t have true neuro-protective drugs. We still desperately need that. The advantage to getting diagnosed early would be most important if we had good neuro-protective strategies that could actually slow or stop progression. That being said, I think there is an importance to getting diagnosed early to reduce the patient’s worry. People struggle for a long time before they reach their diagnosis, wondering what they have and what can be causing the symptoms, going from doctor to doctor until they finally get a correct diagnosis. So I think there is an importance in early diagnosis. There’s been some thought that even the drugs that are currently available may work in some fashion to slow the progression of Parkinson’s Disease. There may be a rationale to starting therapy very early in people, even with the very first sign of symptoms.

RC:
What, based on what you hear from talking to patients, is the scariest thing about Parkinson’s Disease?

DS:
Progression. Worrying about the future. All my patients I talk to say, “If I can just stay the way I am, I can deal with this. This is the devil I know and I can cope with it.” What they worry about is two years from now or five years from now or 10 years from now, where are they going to be?

RC:
And that’s a real unknown because it’s different in different patients, right?

DS:
Right. I heard one of my senior colleagues say, “You’ve seen one Parkinson’s patient, you’ve seen one Parkinson’s patient,” which basically means that everyone’s different. Everyone progresses differently, everyone has different pattern of symptoms, so everyone really is a unique individual with Parkinson’s.

RC:
So it sounds like, while many people, yourself included appear hopeful about what has been learned -- particularly over the last 20 years since Parkinson’s has really come on the scene --

DS:
I would agree, yes.

RC:
-- that there still seems to be kind of a, “the more we get to know, the more unknown there is.” In other words, there’s a lot to be known still about Parkinson’s.

DS:
Right. So we get one battle fought and won -- say, that we can manage early Parkinson’s very effectively, but how do we keep it from progressing and how do we deal with the symptoms that we still don’t deal really well with?

RC:
What do you tell Parkinson’s patients who just tell you they’re scared?

DS:
It’s okay. It’s okay to be scared.

RC:
And if they’re here at this center, do you tell them they’re in a good place?

DS:
Yes, I always talk to my patients like we’re a team in this together. I’m on their side and we’re going to fight when different symptoms crop up, we’ll deal with them. Our whole goal is just to keep Parkinson’s a minor nuissance in your life so that you’re still going about doing the things you love.

RC:
So it really is management?

DS:
Right. Maintaining quality of life and management of symptoms.

RC:
The human element seems to play a really big part  in that. You seem to have a really strong human element to balance your clinical nature. I’m guessing patients notice that and it makes a difference to them.

DS:
I hope so. A good  physician should be part of the therapy. They should be part of the hope and encouragement that you’re going to do well.

RC:
Is it as simple sometimes as making a little human contact, say putting your hand on their shoulder --

DS:
Absolutely. I would suspect a good portion of my patients have been hugged.

Boys of Summer Book - Entry #158

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Interview with Dr. Shill at the Muhammad Ali Parkinson's Research Center

part III

RC:
Is there a prototypical type of Parkinson’s patient (age, sex, race, etc.)?

DS:
Males are a little more likely to be affected by Parkinson’s -- the ratio is about 55% to 45%. There is no ethnic predominence -- it’s seen equally across all races. As far as age, the average age of onset is about 60, 61. About 10-15% of folks are diagnosed before the age of 40 and that would be what we term “Young Onset Parkinson’s Disease.”

RC:
What’s a typical prognosis for a person who is diagnosed with Parkinson’s Disease? What do you tell them?

DS:
First, the most important thing I reinforce with patients is that Parkinson’s is associated with a near normal life span. So we don’t consider Parkinson’s a lethal disease, rather it’s a nuisance that’s part of you every day. It is effectively managed by medication, but the medications do have some downsides associated with them. But it is possible to manage the disease effectively.

RC:
What are some of those downsides?

DS:
There’s a class of medications that are classified dopamine agonist; they tend to make you sleepy. In fact, there are warning labels about driving with that class of medications. There’s been a lot in the news about compulsive behaviors associated with that class of medications. And I think that’s true to some extent. These medications can drive that. sinemet, which is actually the “Gold Standard” of medications for Parkinson’s Disease is leva-dopa which is converted into dopamine, so it really remains the most effective medication we have. Long term use of that is associated with what we call motor fluctuations. Where the medication kind of kicks in and then wears off over a fairly rapid period of time. Sinemet or leva-dopa can also lead something called dyskinesia which is involuntary movements that are a side effect of the medication, rather than the good motor effect that you like to see, you actually see excessive movement.

RC:
Does dyskinesia show up without medication.

DS:
No the dyskinesias really are a side effect of medication.

RC:
What do you know about rasagiline?

DS:
Rasagiline is a drug recently released into the market in the U.S.. It is what we call an M.A.O. inhibitor, so that blocks the breakdown of dopamine. There’s also some suggestion that it may function as an antioxidant and slow progression of Parkinson’s Disease.

RC:
One article we read suggested that it could possibly even turn symptoms around.

DS:
Right and that’s what we mean by neuro-protection or slowing progression and that’s a possibility. The drug is still under research but that is a possibility with that class of medication.

RC:
So there is a good deal of hope with this rasagiline?

DS:
Right.

RC:
What about physical therapy as part of the treatment? How important is it?

DS:
When you talk about treating Parkinson’s, when you come to the doctor, you spend most of the time talking about the different medications. But we also make sure to spend some time talking about what else you could be doing in terms of management. Exercise is very important with Parkinson’s Disease, I tell my patients, “Use it or lose it”. Physical therapy plays a role in that. Physical therapy can help with specific problems. Say you’re having difficulty with your gait, they can teach you strategies to compensate for that. In terms of dealing with certain kinds of rigidity or stiffness they can help with that. The whole goal is all of these strategies sort of feed in together: the medications do part of it, the physical and occupational therapy techniques play a role, exercise plays a role, nutrition plays a role so when you’re seeing people in the clinic you want to be focusing on all those different aspects.

RC:
That seems like a really important message to me. Too many people just take a pill and say, “That’s the answer”, as opposed to it being a part of an integrated system.

DS:
Right.

RC:
What is gene therapy?

DS:
The basic strategy is to use a virus that’s not infectious, so it can’t cause infections. You mutate it, you add the genetic code into that virus code, into it’s own genetics. Then you give somebody an infusion of the virus and then whatever protein you want produced, the virus starts kicking that into gear and increasing that protein.

RC:
So it works like a virus -- my understanding of a virus is that when you get one, it’s always in you. It doesn’t go away. So that’s using something we often negatively associate with, a virus, and making it positive.

DS:
Right. A non-infectious virus. They actually use the common cold virus to do that.

RC:
What do centers like the Muhammad Ali Research Center and others like these need more than anything? What’s your biggest challenge?

DS:
We do a really good job of supporting Parkinson’s locally, within the Phoenix area. What we’d like to see is litlle Muhammad Ali Centers all over the country so that if you’re living in...Ames, Iowa, you still have access to quality Parkinson’s care, where you can get multi-discipline care and you can get someone who really specializes in Parkinson’s Disease. So you don’t have to travel to a major city to get that done.

RC:
Do you have any rough numbers of about how many people are affected by Parkinson’s in  the U.S.?

DS:
The old number is 1.5 million people. It’s probably higher than that now. But nobody’s done and up to date epidemiology study so we really don’t have a handle on that. It’s probably quite a bit higher than 1.5 million.

RC:
The other thing is the number of people who have it and don’t know. What is the average 3-5 years people usually live with it before they’re diagnosed?

DS:
Exactly. Unless you have a very obvious tremor, it can take several years before you’re diagnosed with Parkinson’s Disease. The symptoms start very subtly. Sometimes patients are explained off as a shoulder injury or bunions in your feet or something like that is said to be causing the symptoms. It takes a while before the symptoms are obvious enough that someone can be diagnosed officially.

Boys of Summer Book - Entry #157

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Interview with Dr. Shill at the Muhammad Ali Parkinson's Research Center
part II

RC:
So what is the slowing down process, that makes it go from a regular speed to a slower one in Parkinson’s? Is it a breakdown of the nerve endings? What is it that makes the signal goes slower?

DS:
I don’t know if I can answer that. I don’t know if there is an answer.

RC:
So when Parkinson’s occurs, we just know that the signal is going slower?

DS:
Right.

RC:
What are the causes of Parkinson’s? Do we know?

DS:
There are some things that have been linked to Parkinson’s Disease. There are a few genetic abnormalities that may lead to Parkinson’s Disease and that’s particularly true for Young Onset Parkinson’s Disease, there’s a higher risk of it being genetic or hereditary cause. There have been some links to occupational exposure potentially. People who are welders may be at higher risk. People who have been exposed to pesticides, for instance, farmers may be at risk for developing Parkinson’s Disease. Head injury has been linked to Parkinson’s Disease. It can be a remote instance, so 20 or 30 years previous -- severe or significant head injury along with loss of consciousness has been linked.

RC:
I’ve heard you wouldn’t be able to tell a patient had Parkinson’s for sure until you were able to cut open their brain during an autopsy.

DS:
Right.

RC:
If you were to cut open a Parkinson’s patient’s brain, what would be the tell-tale signs?

DS:
The definitive diagnosis of Parkinson’s Disease comes from looking at the brain tissue under the microscope. Obviously, that can only happen after a person has died. It’s not something we get to know for sure until then. In fact, most people would say it’s about a 10% misdiagnosis rate even when given pretty good clinical diagnosis of Parkinson’s Disease. What you see under the microscope is a loss of dopamine neurons. There’s an area of the brain called the Substantia Nigra which contains these dopamine neurons. These dopamine neurons project to part of the brain called the striatum which is where all kinds of movement is initiated, basically.

RC:
Where is the Substantia Nigra?

DS:
Back part of the brain, top part of the brain stem.

RC:
Does the loss of dopamine mean the neurons can’t be transmitted, can’t get to where they need to go?

DS:
Think of dopamine as being energy for the motor system. Loss of dopamine reduces the energy, the battery, if you will, for the motor system.

Boys of Summer Book - Entry #156

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Interview Dr. Shill
Dr. Shill

RC:
Why did you decide to come here to the Muhammad Ali Parkinson’s Research Center?

DS:
A couple of reasons, one is I’m from here, so there’s some family loyalty there. And the other, major reason, is that I was interested in managing Parkinson’s and I thought they did a really quality job here.

RC:
What got you interested in Parkinson’s?

DS:
I think it was the aspects of movement disorders in general, that you could really lay your hands on it. You can see a tremor, you can feel rigidity in a limb, you can really get a sense of how the movement disorder affects the person just by looking at them, just by talking and interacting with them. That was really appealing to me to really get my hands around it and understand it.

RC:
So it’s a more tangible disease than some others?

DS:
Right. I think the physical manifestations of Parkinson’s are often very easy for people to see and I think that was appealing to me in helping me understand it better.

RC:
What are some of the common symptoms of Parkinson’s?

DS:
One of the first things people associate is shaky hands or a tremor. 75% of people with Parkinson’s Disease will have some degree of tremor. And that’s one of the first manifestations in quite a few folks. Some of the other symptoms associated with Parkinson’s are problems related to slowness of movement, small, cramped handwriting, a softening of the voice, maybe dragging a leg when you walk or shuffling your feet -- those types of symptoms.

RC:
Are there any symptoms that maybe people are less aware of that are also in the Parkinson’s camp, so to speak?

DS:
I think one thing that’s part of Parkinson’s that some people don’t understand is some of the cognitive issues; there’s a slowness of thinking, so sometimes it’s hard to get words out. People will have the impression that someone has a lessened IQ because of that and obviously that isn’t true. There’s an impression that maybe the person isn’t “all there” but really it’s just a slowness of thinking that is causing the physical symptoms or really what you see. Pain is a symptom of Parkinson’s in about 30% of people and I don’t think people appreciate that. Some of the stiffness in the arms and legs can lead to some discomfort.

RC:
I’ve heard some Parkinsonians talk about the problem that they are perceived as being drunk because of some of the loss of motor skill and such.

DS:
Right. I’ve certainly had some of my patients who were driving and were pulled over, maybe they’re swerving just a little bit. We actually give people cards that say “I am not intoxicated, I have Parkinson’s Disease.” And they carry that in their wallets.

RC:
That’s great -- can’t let too many people know about that, might be a scapegoat. How does the nervous system function normally -- in a person who’s not afflicted by any sort of brain disorder?

DS:
I’m not exactly sure what you’re getting at, but I’ll try to answer it. When you start to move, there’s a signal that goes from the brain to the muscles. Normally that happens very rapidly -- within 10 or 20 milliseconds. With Parkinson’s Disease, that impulse is slowed. You think about doing something but by the time it’s reached the muscles it’s slowed down. There’s a slowness in initiation of the movement and a slowness in completing it. That’s particularly true for very coordinated movements. Things like handwriting, speech, walking, things that require a coordinated muscle activity, those are the things that are preferentially affected by Parkinson’s Disease.

Boys of Summer Book - Entry #155

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

June 14, 2006 - Bob

Scottsdale, AZ Screening w/ Health South

Dad and I were fortunate enough to be invited back to Scottsdale, AZ by Karen Christiana of Health South again for two purposes:

A) To meet and interview the riders of a dynamic group, "Amputees Across America" (AAA). When I spoke Karen at the after party for "Boys of Summer", the cross-country bicycling trip I took came up. She mentioned that AAA was also a cross-country group. She immediately said I had to meet the riders from AAA. 

She was right. What a great, enthusiastic, funny, inspirational and hardworking group with "IT" in their attitude. The core group is three riders who are amputees riding 30-35 miles a day across the country and sharing their story with Health South medical groups. They have tremendous support from the Health South staff and have gotten proclamations from Mayors in many of the cities they've gone to (including Scottsdale yesterday). 

Big, big ups to AAA and we wish you much luck, health and love.

We got to show "Boys of Summer" a few hours later at the hospital and had a phenomenal response. This trip to Scottsdale has brought forth an astonishing number of ideas and opportunity. 

With the extra day on either side of the event (on Tuesday), we contacted our other PD friendlies in the area.

The first is Jim Reed, a lawyer who we met at the Phoenix Film Festival. Jim is an incredibly bright and passionate man who specializes in health/disability related issues. He has worked with several presidential campaigns and is getting more involved in films. He is very interested in "Boys of Summer" becoming "THE" PD film. In meeting with him on Monday, he suggested we needed to make some changes to the film in order to make that happen. Dad and I had discussed that before and are very open to that as we'd like nothing more than for "Boys" to become "THE" PD film.

So what does that mean? It means we need to up the PD content for one. So we began to strike out in that direction and doors have flown open quickly. We have an interview with neurologist Holly Shill at the Muhammad Ali Parkinson's Research Center today. Jim has helped with the questions and Dr. Shill is a very pertinent expert in the field. The other nice thing, content-wise, is that Phoenix is the first stop on the "Boys" trip (when we came to see the D'Backs). That means I'll be able to put her interview right up front in the movie to up the PD stakes/information from the get go. 

We also (completely unrelated) got a call from the New York Post yesterday (through Alicia Marks, PR rep with NPF) and they want to do a Father's Day story on us! That's great pub that, again, will hopefully give us the eyes we’re looking for to find a buyer. 

Yesterday, after our screening with Health South, Karen, Melinda and Barbara (staff, Therapy Experts and Wonderful ladies) sat down with us and discussed the possibilities for how they could help get the film out in a wider distribution. It was a very encouraging conversation, details of which need to stay on the low-low for now. 

Boys of Summer Book - Entry #154

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

April 30, 2006 - Bob

Walnut Creek, CA

The day mom and dad got back, mom said “I’m just going to lie down for a moment”. It seems like a natural enough thing to say unless you understand my mom. She has code words/phrases/actions that indicate she’s feeling depressed. The weird thing is she says or does them and doesn’t see the connection. Annamaria and I knew right away what this meant: she’s probably going down for a while.

May 1, 2006 - Mom

Walnut Creek, CA

Overall, I did enjoy Florida very much. The Keys were beautiful. It was hard when dad was in such pain with his hip and back.

When we got back Esther (our neighbor of 31 years and very close friend) was scheduled surgery. I am very scared about that. She’s like an older sister to me.

Bob asked me about my lying down in bed during the day. He said he was concerned I may be going into depression. I’ve made an agreement not to sleep in my bed during the day as that’s been an indication of my depression in the past. I honestly just felt tired. 

June 1, 2006 - Mom

Walnut Creek, CA

Esther and Suzanne (neighbors) were talking to me a lot -- doing some praying. They are very concerned for me. (My sister) Denise’s e-mail scared me. I feel like I am frustrating everyone. I’m scared I may lose everyone. I don’t know what to do. I definitely don’t want to go back to Kaiser.

Boys of Summer Book - Entry #153

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

April 19, 2006 - Bob

Walnut Creek, CA

Mom and Dad took our doc to the Palm Beach Film Festival. Due to financial and job constraints, I am unable to attend. I hate not being there for it, but I can't just chase something with no money (I've done that long enough!). This "getting married" thing is happening in about five months and it's causing me to get my financial house in order. That's a good thing and it's a sacrifice -- my freedom to just come and go as I please. I feel a bit like I'm saying g'bye to Peter Pan.

April 20, 2006 - Mom

Palm Beach, FL

When we arrived we had a hard time finding anyone involved with the festival. We finally got some information then went to the opening night gala. We saw everybody involved with the festival there. We saw the screening and how everyone was handing out the cards. I was listening to everybody. I wasn’t really sure what I was supposed to be doing. 

April 22, 2006 - Mom

Palm Beach, FL

The big problem was that our movie was shown at a bad time. My heart was broken because not very many people showed up. I saw other films that were good, but they weren’t better than ours.  

I was so sad that there were like 8 people for our screening. We didn't hand out enough cards or talk to enough people. What more could I have done? I had never been to one of these -- so I didn’t know what else to do. Dad’s shy about talking to people. I really got to see the difficulty of marketing first hand and it’s very frustrating. How do you convince someone you have a good product? You can’t drag them in.

Right before our movie was a movie about India and they had TONS of family, relatives and it was a huge group. I wished we were at Seattle or somewhere where we’d have support like that. But then you had 500+ in AZ. All in all, the whole festival seemed very disorganized, poorly put together. There was no support. It was spread so wide. We went to two other screenings and there was hardly anyone in them either. 

I did get to meet Mary Ann Sprinkle at the screening. I was so happy to meet her. She’s a wonderful lady and has done so much for Bob and Dan.

Boys of Summer Book - Entry #152

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Below are a few of the reviews from the film festival by viewers. There are many more posted at: http://www.imdb.com/title/tt0770724/reviews.

April 3, 2006

Robert, 

I saw your documentary in Phoenix and it blew me away. Like you, my best connection with my Father (and Brother) came through baseball. My Dad started playing catch with me and taking me to baseball games when I was 8 yrs. old. And, he died when I was 11 and my brother was 5. I passed along a love of baseball to my brother which we share to this day. I'm 56 and my little brother is 50. Thank you for another thing baseball we can share! 

Best Wishes, 

Hank

Reviews from imdb.com:

A Father and Son Odyssey to Baseball Parks, raising awareness of Parkinson Disease. 

March 31, 2006

Author: boyerpk from Phoenix, AZ 

This film touched my heart and brought back memories of sharing good times with my parents. As a film patron, I look forward to the general release of this film, as the story is entertaining as well as educational. The wide release would not only raise knowledge about Parkinson Disease but would raise funds for Parkinson research. The every day trials were fun to watch, the sense of humor of both men was priceless. There is much to be learned from these fellows and the way they handled disappointment and triumphs. The public embraced them and that was heartwarming. It is America at its finest -baseball- as our national pastime. And being able to share it with someone you love is priceless. My wish for all would be for everyone to experience one day with a parent and enjoy the day. This film celebrates the America in all of us.

*********

Baseball, Apple Pie, Fathers & Sons 

April 1, 2006

Author: jzatarski from Phoenix, Arizona 

Boys of Summer, a Father & his Son - Who wouldn't want the opportunity to tour all of the Major League baseball parks? Yes, as baseball fans it sounds like the ultimate road trip. But what if the reason for going is not the reason you expect.

Some of us have been to many of the big league stadiums. We may have gone to our favorite park as youngsters with our Dads, we may have gone to the ball game while on an out-of-town business trip - or better yet on vacation.

Yet the road trip this son and his father took was unique. Unique in the way they met the challenge of the father's medical condition and the son's quest to make the trip financially feasible. The cause they were on as they skipped across the USA and into Canada one ideal summer.

While watching the Boys of Summer, I thought back to the time my father was alive and wish that something like this would have been possible for us to do. But like the song, the time is never there when you need it so that the commitment that was made was an impossible dream.

You will really find yourself involved in this journey of a son and his father. Even my non-sports wife found the opportunity to share their adventure - a dream in the making. You wondered if they would ever be able to make all the professional ball parks and not run out of money.

But those key observations made along the way - the interviews with the fans and the new friends made along the way - will make seeing this movie a perfect opportunity for all of us to share in the wonderful game, the families that enjoy it, and a father & son who know that the road traveled together is the best world to be in.

Boys of Summer Book - Entry #151

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Mar. 26, 2006 - Dan

Phoenix, AZ

Sometimes you are just to close to the process to see the whole picture. Chris LaMont, the executive director of the Phoenix Film Festival set the tone. He is a bundle of energy and enthusiasm.

The first sign was when we checked into the hotel provided by the Phoenix Film Festival, the Valley Ho in Scottsdale. On our Boys of Summer(BOS) tour we got used to camping, private homes and inexpensive motels. The Valley Ho was an extra special surprise.

The second sign was the Boys of Summer selection as the closing film of the festival. I didn't realize that that was such a special honor.

The third sign was the enthusiasm of our supporters Mike O'Leary, Linda Cooper and Rhaye Mosley.

The fourth sign was the response form the students at the physical therapy class at Arizona State University. We were invited to tell our story and the students seemed surprisingly interested.

The fifth sign was the coverage by the local TV stations which was the result of the efforts of our PR person, Erica Sico. All of the reporters seemed genuinely interested and were very through in their approach.

The sixth sign was that half the seats were sold the day before our screening. The theater holds 585 people.

The seventh sign was the news that over 400 tickets were sold ninety minutes before our screening time.

The eighth sign was that over 500 tickets were finally sold for the screening. After a very humbling introduction the screening began and before too long there were some heart stopping technical problems. The excellent technical staff was able to correct the problem.

As our story unfolded on the giant screen the audience response was the ninth sign. I was finally getting it. I should have known.

The tenth and final sign was the outpouring of appreciation from so many people for what the BOS meant to each of them. For many it was the trip itself. For some it was the relationship between Bob and myself. For some it was the individual Parkinsonians' stories and struggles. Many asked how Paulette was doing. Some loved the humor.

The film is a great one. I should have known.

 

Boys of Summer Book - Entry #150

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Mar. 30, 2006 - Bob

The screening at Phoenix Film Festival (cont'd)

The movie rolled, the audience was with us. Thunderous applause at the end. Dad took the first part of the Q&A. I got up to join him a few minutes in. The questions we're great. One man stood up without a question just to say he wasn't all that thrilled to come to the movie -- just something to do -- but he was incredibly moved and thanked us for making it.

Inspirational. Loving. Powerful. Moving. Important. THANK YOU.

Over and over again we heard these things and more. Better than I could have imagined.

We head over to the after party across the parking lot. It was like a wedding reception. We couldn't even get a drink or food for about 90 minutes as so many people approached us. How wonderful. So touching. Personal stories. Tears. Laughter. Questions. Thanks. People inspired to go volunteer with their local PD agencies because of the screening. People demanding we come back and do another screening -- if not a run.

The Harkins group (who owns the theater) will get a glowing report of the 500 (that's the final count) people who came out to see "Boys of Summer" and how much they enjoyed it.

We finally settle in and have a sip of beer and a bite of food in between conversation. A ton of love and listening.

So many thanks to be passed out, and I will do so as I can remember.

Briefly:
The Phoenix Film Festival
Mike O'Leary and Linda
Rhayelin
Erica
The Valley Ho Hotel
All the news stations that gave us coverage
The local APDA

So many more. I'm tired -- didn't sleep much last night and we have the long drive home today. But that's okay. As dad says, "Ain't no mountain for a couple of climbers.”

 

Boys of Summer Book - Entry #149

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Mar. 30, 2006 - Bob

The screening at Phoenix Film Festival (cont'd)

Back at the hotel, it's still early afternoon and we have some time to kick back. I read a bit, but can't really sleep. I'm feeling dead in the water an hour or so before I want to get going so I hit the gym. That was the ticket. Got the blood pumping, now I'm rolling. 

We head off to the screening. Dad drives and misses our turn. Whoops! No big deal as we're leaving (intentionally) quite early, but I'm a bit nervous about the reported awful traffic in Phoenix -- which we've hit a bit of here and there this week. Turns out to not really be a factor and we get to the theater around 6 PM -- T-Minus 90 minutes to show time. 

A Phoenix Film Festival tells us where the line is to get in for the screening of tonight's movie -- unless we're the filmmakers, of course. We smile -- we got dibbs. No line for us!

I go to grab a copy of the film on DVD for them as they don't have it yet -- odd? I don't know. Whatever. I have a few copies. I also owe them a music CD I've asked to be played in the leadup to the film. Suddenly it doesn't seem so important -- all my grand ideas about the pre-show just don't seem so important. But I go to Circuit City anyway and conduct a frantic search of the CD department before settling on Jock Itch Jams (or something) with a few good songs and a few not so good ones. It's $5.99. It'll do. So it goes.

Back to theater. We go in for the picture/sound check. It looks and sounds great. I notice a few people filtering in. I hustle outside and see the line. It's good -- not great but good. Okay. Maybe we're talking about 150 people or so. It's not what I'd been told, but that's still a pretty good number. I look around after the last person goes in and notice...what's that? Another line! 

"Is that for us?" I ask.

The festival staff member smiles and nods. 

"Cool," I say and head outside to film this mob -- easily another 150, probably more! Wow -- this is getting pretty good. I'm told we're actually at over 400 tickets sold. Oh baby. 

I get a call from Annamaria and she tells me that we have a line around the corner waiting to see the film at the Parkway. We’re killing them in two cities at once! This is too much.

Dad and I go inside and things are settling in. I'm trying to reconcile the crowd in my mind - it's tough. I never imagined a screening this large in a venue like this for our little film. For all the dreams I've had, this is a bit overwhelming. 

The festival staff introduces our film. I shoot from various angles, running around the theater to work the nervous energy as much as anything. Then the lights go down. We're on. I sit on one of the steps and watch as the Bro n 'Stine logo comes up. I start to cry. This really is too much.

The movie works from the get-go. The crowd is into it. There's laughter, palpable recognition and sweetness in the air. We've got them. I'm so excited, I can--

film glitch 

What do I mean by that? Ever had a DVD freeze up on you? It's start to pixelate and act..."funny?" It's not so funny at a film festival premiere with several hundred people. I run to find someone to get a voice up to the projection team to try another DVD -- try anything. Stop this one, at least! It goes on for about five minutes before we get to the position where we at least have the pixelated version shut down. I grab a mic and go into showman mode. I don't know what I was talking about -- I just know I was talking and getting laughs. We sung "Take me out to the ball game". After a few minutes the projectionists were ready to try it again. 

It came up...for about a minute. Same place, same problems. Damn.

I grab the mic again. Now it's part two of my variety show. A poor-taste Sonny & Cher joke I pull out of my arse grabs a healthy laugh/"ooooh" from the audience. They're still with me. Whew!

Another five minutes roll by. We're ready to go again. Let's do it. Let's roll. So we do...and it works...and it works...oh, boy...it actually works!

And so it goes.