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 #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.