Boys of Summer Book - Entry #92

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 Pam Milton, 

Young Onset Parkinsoian 

at the YOPN, Minneapolis 2004

Pam Milton

RC:

Women are less-known to have Parkinson’s. Do you have any numbers or percentages on that?

PM:

I don’t know the percentage but you’re right. There are a lot more men than women. 

RC:

Do people act surprised when you tell them you have Parkinson’s?

PM:

Oh yeah. Very. I’ve had it for 19 years. 

RC:

And how did you come about knowing you had it?

PM:

When I was pregnant with my first son, I was 22, my right hand started shaking. I went to the neurologist and he said, I don’t know what’s wrong with you. And it took me 15 years to get a diagnosis. It wasn’t until Michael J Fox came out and said he had it. And some people said, y’all are exactly the same age, maybe you have it, too. And they tried me on sinemet and it worked. So I found out in 1999. 

RC:

And what was that feeling when you got the diagnosis?

PM:

I was elated at first because I thought, “I know what’s wrong with me”. I’m not crazy. It’s not all in my head. It’s not just nerves. But then it sunk in. What got me was that it’s not just physical. The cognitive stuff is what gets me. 

RC:

What have you experienced on the cognitive front?

PM:

The short-term memory loss. Inability to...numbers don’t work any more. Checkbook? Forget about it. Don’t do it. Not being able to find words. Not being able to remember -- oh, I was sitting at my laptop the other day and I couldn’t remember where the phone cord went. I was looking over the whole thing and it just wasn’t there. I had to have someone show me. Just stuff like that. 

RC:

So is that frustrating?

PM:

Yeah, it’s frustrating. Sometimes it makes me feel old. I don’t want to feel old. I’m only 42. I’m not ready to feel old yet. 

RC:

You said we were living your dream. What do you mean?

PM:

I’ve wanted to go to Yankee Stadium. I’ve wanted to go to Wrigley Field. I’ve wanted to go all over, just visiting different baseball fields. My dad thought I was going to be a boy, so I’ve been watching the Atlanta Braves since I was five years old -- or younger. And they finally got good. They’re finally worth watching which is fantastic. My oldest son played in high school. He played since he was four. And now he doesn’t play any more and I’m like, “I want baseball!” He was a pitcher and he was good. He had a curveball that could make a batter look stupid. 

RC:

You’re a proud mama.

PM:

Oh, just a little bit. We used to laugh -- he’d get up on the mound and I’d hide behind the pole because I couldn’t watch him. I’d hide and then I’d look and then I’d get out there and start yelling. He’d look over at me and go, “Shut up, mom!”

(She laughs)

I’ve always told my husband that I want to rent an RV, drive around the country and just go to all the baseball fields. 

RC:

Do you think you might do that?

PM:

I don’t know. I don’t know. Maybe one day. It would be awesome. But when I heard what y’all are doing I thought, “God! They’re living my dream! I want to do that so bad!”

RC:

What’s great about baseball?

PM:

The fans. The fans are fantastic. The Atlanta fans are great. I’ve watched different events happen for players -- milestones where the fans were so curteous and so appreciative of what they’re watching. I was listening to the radio when Hank Aaron hit 715. It was awesome. It was so cool. I was listening the year before, the last game when he didn’t hit it. You know? It was almost there and he just didn’t quite get it. 

It’s...it’s America. I love football. I love college football. Pro football -- eh. But baseball -- baseball is great. My grandmother’s 87 years old. She never misses a Braves game. I mean, we had a family reunion last weekend. She went downstairs. Forgot about everybody, went downstairs and watched the Braves. It’s just great. 

RC:

You said baseball is American. What does that mean?

PM:

Aw, come on. Okay, I’ve got some  friends here from England. And they’re going to the Twins game on Sunday. And we were talking about it and they said, “We don’t even know what it’s about. We don’t have baseball.”

RC:

Do you think the history of the game is important?

PM:

Oh yeah. I used to work in insurance and we had a customer that would come in and he was really, really old. And everybody would say, he’s older than the first day of baseball. It’s always been there. 

My dad used to sell sporting gear. He has a Hank Aaron jersey that Hank Aaron signed. It was going to be mine, until I had two brothers. I have a feeling they’ll get it. 

Boys of Summer Book - Entry #83.2

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

100% proceeds go to the Michael J Fox Foundation. 

On the subway, going to see the Mets:

RC:
What is the best stadium you’ve seen so far and why?

DC:
Fenway, because it was so simple and natural.

RC:
What did you think about meeting those young ladies at the gas station last night?

DC:
It was like a dream. I’m still kind of blinking and wondering if it really happened. They were so full of life and so full of the journey they were on -- kind of a similar journey. It was remarkable.

RC:
You said the other day that there are too many coincidences.

DC:
There was another example of it. There have been a number of them along the way and I’m constantly surprised with how closely they align themselves with what we’re doing. And how compatible they are. It seems extraordinary.

RC:
So does that change any belief systems you had? Has this trip changed any of your belief systems about anything?

DC:
I think about compassion and...people are more compassionate than I would have expected. And when they’re allowed to be, they’re more thoughtful.

RC:
What do you mean “when they’re allowed to be”?

DC:
Well, it’s opening up to them. Inviting them into your world.

RC:
So this trip has forced you to open yourself up more?

DC:
Oh definitely. And it was interesting in Minneapolis meeting with the Parkinsonians, Jack said more than once that the disease tends to cause him to pull himself into his circle of comfort. And he was thankful we were having the event we were having because it was something he wouldn’t normally do. And of course we’re doing something that I wouldn’t normally do -- much larger than a trip to the ballpark. It’s a trip around the country. It’s a natural thing when your abilities are becoming less to find comfort in the familiar but it’s also...it’ll end up...maybe that’s what John Trudeau meant when he said “Don’t let the disease eat you.”

RC:
So are you still thinking about that a little bit?

DC:
Oh sure. That’s one of the ones that resonates. There’s less I can do about the physical part. There’s more I can do with the mental part. That’s to keep the thought process going and to take care of myself, but not limit myself.

RC:
Gary had some good takes -- our friend from the lake in Minnesota. His level of activity -- he’s almost hyperactive and he’s been diagnosed for 15 years and has some pretty serious dyskinesia and yet his creativity and how prolific he is are astounding.

DC:
I have a hard time imagining what he’d be like if he were not a Parkinsonian. He probably would have built a castle or something -- I don’t know.

RC:
He might anyway.

DC:
I don’t see how he could be any more active. That’s just very heartening.

RC:
What were your thoughts at the Field of Dreams when you walked in?

DC:
I was surprised at how unartificial it was. The corn got to me more than anything else. The house, the backstop, I couldn’t smell it, but it looked like it smelled right. It didn’t look like a set and of course it was a set and now it’s something else. I have an idea of a set being something that has a front side you photograph and a backside you don’t. You could photograph any side of this and it was very real.

RC:
Contrast your thoughts of when we first discussed the project to where the project is now -- in terms of your thought of it’s success.

DC:
It’s kind of like filling in a blank page. We started with an outline and now there’s lots of textures and colors. So there’s an awful lot more to it. The things that we’ve already discussed that I couldn't’ have anticipated and many more. And then the thing I’ve said before is the biggest surprise is the people. Baseball is -- we saw a great game last night for instance -- but the richness of the trip is coming from meeting, talking to the people of all kinds -- not just Parkinsonians. Those girls last night, for instance. And Paulette just so you know, we didn’t touch them.

RC:
Yeah Paulette and Annamaria. They touched us. But we couldn’t do anything about that. But we didn’t touch them.

Park Number 18 (of 30) 

Shea Stadium
Atlanta 4, New York Mets 3
 WP: M. Hampton (6-8)   LP: S. Trachsel (9-7)

Oak 9, Tex 2

Boys of Summer book Entry #53

Park Number Six (of 30) at Turner Field

Atlanta 10, Boston 4
WP: M. Hampton (3-8)   LP: D. Lowe (6-8)

Side note: Oakland FINALLY gets over on the Giants, 9-6.

July 5, 2004 - Dad
Prince William Forest, VA

I woke up at 7 a.m. to a beautiful cool morning in Charlotte.  The day is off to a good start – all my laundry is washed and Barb has sorted and folded it for easy packing (thanks, Barb!). After a breakfast of pancakes and fruit on the deck, we pack up and say "thank you and good bye." Our trip today will be about 350 miles before side trips. 

We make a side trip to Durham to visit Duke University, Bob’s favorite college basketball team. As it turns out, this is the very day Coach K announces he will not accept the job as coach of the Lakers, so there’s a bit of media buzz. We also make a stop at Costco for lunch and gas. 

On the road again, the end of a three day holiday means heavy traffic and pockets of slow driving. We are unable to connect with a "friendly" in the area so we make camp at Prince William Forest State Park. Bob needs to go to Kinko’s to get online with his computer. We finally locate one in Alexandria – an hour-plus later we stop at Wendy’s for dinner then it’s back to the park for the night.

July 5, 2004 - Bob
Prince William Forest, VA

Barb and Naiden were the most kind and gracious hosts I could imagine. They are sweet, funny and very, very warm. It’s so wonderful connecting with old friends. There’s most definitely something special about that connection -- the depth of it -- the resonance of it.

The game was great yesterday.

Later...

This trip is an affirmation of life, love, faith and friendship. To reconnect with old friends, to make new ones, to experience and re-experience things is amazing. It’s a celebration of life and all the things that we’ve done and will do. It’s so important to let friends know you love them, so important to step out of our “easy lives” and reconnect to our authentic lives.

What do I mean by that? I mean asking what we are doing here on this planet. If at our core, what we want is to be happy -- then our focus on work and money is out of balance. Not that work and money can’t be part of being happy, but they are not the absolute facilitators of happiness. Happiness can and is achieved in so many other ways that don’t cost money or require work or achievement, but rather, ask us to let go and allow time -- not “make” time because we can’t do that. Allowing time for things like sitting around with loved ones is key. Just sitting and watching a sunset, a wave crash or maybe throwing a ball back and forth holds simple perfection.

Why are we here on this planet?

What for?

Perhaps...

Boys of Summer book Entry #52

July 4, 2004 - Dad
Charlotte, NC

Happy 4th of July! Today is our first day game at a park with no roof.  We arrive at Ted Turner Field after passing through the parking lot where the Fulton County Stadium had been. All that is left is a monument to Hank Aaron’s 755th home run. We meet Bob’s friends, Naiden and Barb, who had driven from Charlotte, North Carolina. We enjoyed a donated lunch at the Chop House -- a restaurant inside the ballpark just beyond center field.

When we order beer, we are told they cannot serve it until 12:30 which is only 15 minutes away so we say "that’s fine" and next they ask me for I.D. – great kindness!

It turns out they have to ask everyone regardless of what they look like. 

Before the game there are parachute jumpers from the armed forces and a very impressive low fly over by fighter jets. The Braves are hosting the Red Sox in what turns out to be a very exciting game. Boston got off to an early lead. In the fifth inning Atlanta scored 9 runs and ended up winning the game 10-4. In the bottom of the 8th, there was a sudden downpour that caused a 40 minute rain delay. The ground crew got a chance to show off their talents and had the field ready to go in short order. After the game we drove 3 to 4 hours to Charlotte to spend the night with Barb and Naiden. 

July 4th, 2004 - Bob
Charlotte, NC

Last night, I had my 2nd dream of my dad being attacked or somehow looking frail. The first, which happened earlier on this trip, involved some street thugs coming at him and me jumping on them and literally ripping one of their throat boxes out.

Last night it was a woman in a car who was backing out (while on the phone and breast-feeding her child -- help me Freud?) who almost ran over my dad. My dad, for some reason -- his frailty? -- was not able to get out of the way. She didn’t run him over, but I screamed at her to look out. She didn’t hardly acknowledge me, so I jumped on the side of her car and demanded she acknowledge me and that she almost ran over my dad. 

I was reflecting on some conversations I had with dad yesterday. We talked a lot about faith as it is a recurrent theme in what we’re doing.

What is faith? Does dad have faith? What is my faith? One of my frustrations with Dad growing up has been his not taking a stand. He doesn’t make a decision on lots of things, he just allows them to be what they are. But even as I say that, it doesn’t sound like a bad thing -- that sounds good. But there’s an indecisiveness sometimes, or an unwillingness to go forward with things that makes me feel like, “Dad, make a decision.” Not that he never does -- God, I’m trying not to be unfair about this. Every time I say something, part of me says, “No, actually, dad does do that.”

So what does that say about me? Am I unwilling to make decisions on things? I think I’m pretty decisive. Got us to this point, obviously with the huge help of many others. I don’t know. I’m tired. There are a lot of things running through my head right now.

I’m so happy for the things we’ve accomplished, So excited for the things we’ve got in front of us. I think I’m a little sad about not being able to express the goofy side of myself. I can do it, but it doesn’t always get validated on this trip.

So maybe part of what I’m seeing is that there is a falloff in some of Dad’s energy. And part of it is due to his Parkinson’s. A part of him is going away. When he’s there, when he’s rested, there’s the dad spark that I know and love and he’s a wonderful guy. And I love him no matter what. At the same time there’s a sadness when there’s a part of me that wants to play -- I guess it’s my little boy wants to play with dad and he just doesn’t have the energy to give me what I want. And that’s selfish on my part -- no doubt. I want my dad. I want to play with my dad. That’s what I want. It’s a more limited thing these days in terms of what he’s available to.

I get scared, too, sometimes that maybe I’m pushing too hard on this trip and, God I want to be sure that Dad’s okay -- that I’m not doing anything to further the process or the pain. You know I find myself sometimes following my dad and putting an arm out as he’s walking because I’m afraid he’s going to stumble or fall. And that’s such a weird feeling because Dad in my mind, the mythic, the hero dad, that he has always been is a guy who’s so strong and so vital and active and a go-getter. To see him struggling or simply not having the energy to be the man I’m used to him being is hard. It certainly makes me question myself and it makes me question the future for him. He seems to be handling everything really well. I’m just so glad he agreed to go on this trip. And so glad that the amazing people we’ve met along the way have supported it happening. And now we’re starting to hear, in an interesting way, people thanking us for making this happen. Our trip is meaning a lot to them. That’s picking up steam as we go And what an interesting thing it is to have people thanking us on the heels of what some people thought was just a selfish trip of a father and a son. Some people thought, who is this kid who just wants to go out and hang out with his dad at the ballpark? Part of that’s true -- I do want to go and hang out with my dad at the ballpark. Part of it is this kid also wants to do some good things for people other than my dad. Bringing Parkinsonians together to see if there’s something the community can do to raise the common good for Parkinson’s Disease. And that might be as simple as awareness, That might be as simple as community. That might be as simple as networking and connecting. And if I can help do that through what we’re doing, then I’m honored and blessed. This feels like a very good use of my talents. And I’m thankful.

9:50 AM - Bob

I am struggling -- mightily at times -- with my dad’s quietness. I am (generally) optimistic, light, bright and excited about life. Even when I’m tired, I’m open to the possibility. There is (what I perceive to be) a crankiness and a closed-off nature that appears in my dad sometimes. As a child, I remember a lot of cynicism. That’s a painful thing for me to be around because it works so hard to crush possibility. Possibilities are hopes. Hopes are dreams. Hope/dreams take what are only imagined and tells them, “it’s okay -- you’re not crazy to hold that thought”.

I am hopeful. I am a dreamer. I believe in that which is not yet. That spirit is part of what got us on the road to where we are now. I trust today, remember yesterday and dream of tomorrow.

Boys of Summer - Entry #51

July 3, 2004 - Dad

Red Top Mountain State Park, GA 

We are up and on the road again by 7 a.m.  We plan to drive to Atlanta today.  We stop at St. Augustine to check out the beach before turning inland.  We turn west at Jacksonville and before long are crossing into Georgia.  

After 12 hours on the road, we reach Atlanta and have a donated dinner at Sweet Tomatoes (thank you, Sweet). Then it’s off to find Red Top Mountain State Park which is 15-20 minutes north of Atlanta. By the time we find the park, it is dark. We are getting pretty good at setting up camp in the dark. The temperature cools off to the low 70’s which makes for a better night’s sleep.

July 3rd, 2004 - Bob

Red Top Mountain State Park, GA 

As I was tired last night and going about business that I felt needed to be done, I thought to myself, I hope I don’t “work” this trip away. There are good things to enjoy along with the work elements (necessary as they are). Do my work and release myself to the moment, I keep saying.

Today was a long (but scheduled as such) drive from Miami to Atlanta. It’s all a part of the experience. There’s a long way to go and every day is special -- even the seemingly mundane stuff like long drives. It does afford good, uninterrupted time to talk and listen to radio-magazine programs on NPR. 

It’s strange and more than a little difficult to see my dad get tired as he does or not be able to move or lift as he once did -- not that any of these things make up the core of who he is, but they are part of my perception of him. Seeing him slip a bit physically takes away the Herculean idea most boys have (or had) of their father.

I remember my dad as the iron man who ran 6-8 miles a day. The Bay to Breakers was a classic run where we’d drop him off in San Francisco (“it’s so early” I think I whined once or twice -- yeah, “poor us”, we actually had to wake up to sleep in the back seat as Dad and 10’s of thousands of other psychos challenged the Hayes Street Hill). We’d meet Dad at the end, struggling to find him in the sea of humanity -- but always finding him, usually by his smile and his arms in the air (complete with very sweaty pits -- dad was quite a sweater).

I remember when I was a little boy, camping at Big Sur (near Monterey, CA). We climbed what seemed like an insurmountable hill and my dad smacked tennis balls up at us. We squealed with delight as the balls came near us and occasionally hit us. I’ve been back to that hillside since -- it’s not nearly as precarious as it seemed as a kid. I had the feeling that any of these balls could knock us loose from our “hiding place” and we’d go tumbling down the hill to...well, I guess those leaves wouldn’t have been too bad to land in.

I remember, too, a time where Dad and me were riding our bikes home from church (I was probably  about eight): A dog tore out of a yard we were passing by, barking and nipping at my heels. I was scared to death. My dad turned and fired a rock (where he got it I have no idea), he either hit the dog or scared it bad enough to have it scamper back to it’s yard. 

 “Keep your dog in your yard!” My dad bellowed. 

A tear of fear turned into a tear of pride just like that. The hero’s legend grew.

Once when I was in high school, my dad (in nothing but his well-worn tighty-whities) unwittingly came face to face with a cheese thief in our garage. I mean it -- the guy was stealing ten-pound block of mozzarella cheese (my dad makes great pizza). When my dad opened the door to the garage, he and the thief took one look at each other, screamed and ran in opposite directions. A moment later, my dad regained his wits (sort of), went out into the street (still in nary more than those tighty whiteys) and tore the license plate off a van that he was pretty sure harbored the dangerous cheese thief. The huge police dog that eventually flushed the thief out of the van had nothing on my dad.

So now the flesh from his chin sags slightly. His jaw is often slack, an effect of Parkinson's -- sometimes making it look as if he has gone away. Part of him, physically, has. And though that hurts, I know his mind and spirit are fully in tact. I see Dad and I as two souls on a different path (at least, by the time I entered this realm). We have clashed or, perhaps even more painfully, simply not connected and not understood how to many times throughout our lives. 

But I see now, in this blessed time we get to spend together, that we are far less different than either he or I once imagined. I love and am thankful for him -- all of him -- every day.