Gary (who has Parkinson's Disease) and Mary Ann Mortensen are a couple we were strongly encouraged to go meet and spend some time with by our MN crew at Hubert's. I wasn't in much of a socializing mood (with tons of unsettled work to be done), but after enough pushing, I said let's do it. We traveled to their house, about an hour south of the direction we were heading, and found them to be most gracious hosts on a beautiful lakefront property. After taking a tour of their home, including Gary's fantastic mechanical artwork and workshop, we took a cruise on their pontoon boat...and talked.
MM:
So has Parkinson’s stopped you from doing anything?
DC:
Well, I don’t work anymore.
MM:
So you retired because of it?
DC:
Yeah.
(Gary retired from teaching math in high school because of his Parkinson’s Disease. He didn’t want to declare his illness, but retired because rumors that he was teaching drunk began to surface.)
MM:
What did you do?
DC:
I was a municipal bonds trader. Bought and sold municipal bonds. My wife was diagnosed with cancer the same week I was diagnosed with PD. So it was kind of a difficult time. That was when I decided I could afford to retire, so I did.
MM:
How is she doing?
DC:
She’s doing real well. She’s had a couple bouts -- dealing with some depression as well. But she’s handled it very well. That was the biggest concern in this trip we’re taking. She didn’t like the idea initially, but it grew on her.
RC:
I was living with mom and dad at that time (when they were both diagnosed) and they were actually kind enough to let me make a movie, partially, inside their house. Mom had a lump that she had known about for a while. And there had been concern. Not that that made it any better. But the Parkinson’s just came out of left field, to borrow a baseball analogy --
DC:
Cancer’s a lot more common.
RC:
Right. Not that it’s okay, but you can say, okay, at least I understand it. But you just don’t know what Parkinson’s is unless you know somebody with it.
MM:
What were your symptoms like when you went in?
DC:
Mostly loss of dexterity. I had gone to my doctor and told him I was having trouble typing at my computer. And it was mostly on my left side. I’m right handed -- fortunately. She was very quick to suspect it. The first thing she asked me was “Do you have any Parkinson’s in the family.” I said no, of course not. She said, well I’m going to send you to a neurologist. And I didn’t really think anymore about it because it really was a faraway thought. So I went to the neurologist and it took him all of ten minutes to diagnose me. He said “we won’t know for sure until we do an autopsy on you but we’re going to do some tests on your brain, but we’re pretty sure you’ve got it.”
But, uh, we’re doing real well, in spite of all that. I’m just very thankful that it seems to be progressing at a slow pace. One common theme I’ve noticed among Parkinsonians is that they’re very resolute about not thinking about the future. Trying very hard to stay in the present. I try to keep reminding myself of that. There’s nothing you can do about the future, other than plan a bit, I suppose.
GM:
You may not make it there. Why worry? I agree.
DC:
Enjoy now. I see an awful lot of people doing exactly that. It’s very heartening. That’s been the best part about the trip.
MM:
It makes you kick in to do the things you maybe wanted to do or should have done.
DC:
How big is your support group?
MM:
It varies. 12-15 couples. But people vary -- we never get that many people who come all at once. We have two people who are single and I think, how do you do what you do by yourself?
GM:
No one person at our group has all the symptoms I have. But every symptom I have, somebody has that. And it’s just kind of fun to chat with people that know exactly what I’m going through.
DC:
Sure. Just today at lunch it was like, “Oh you did that?” and “How did you handle that?”
GM:
Have you had any of the freezing yet?
DC:
No.
GM:
Something you have to look forward to. There’s all kinds of ways to deal with it. Some people tell you to count. I have a cane that I kick.
DC:
That’s how you get out of your frozen state?
GM:
Yeah. There are like 50 ways you can do it. It’s just fun to hear them all.
MM:
Have you learned a lot about your dad on this trip?
RC:
It’s been more the subtle things. i kind of knew but I was a little surprised to find that most of Dad’s baseball fan ship came about from my being a fan. I guess I thought that dad had more of that (on his own). I remember that dad and I shared a lot of sports. I mean like football -- I used to be a junkie for sports. I went to school for journalism. I wanted to be one of the ESPN guys. Dad would sit and watch the games with me. So when I went away to college I just figured dad would do the same thing. But I talked to mom and she said dad doesn’t do that when you’re not here. I said, “oh”. But I don’t think there have been any other major discoveries on this trip. We’ve kept pretty close tabs on each other throughout the years. Dad?
DC:
We’ve stayed pretty close. We certainly haven’t slept in the same bed since you were a little guy. (laughs)
RC:
I feel sometimes strange about being in control of things here because I’ve been used to dad taking control of things in the past, especially on road trips. And this is definitely my show. Not in a bad way. So I’m running things and sometimes I find it a little disorienting because I just expect dad to make a decision on something and I suddenly realize, oh, I guess it’s on me.
The film dictates a lot of what we’re doing. If we were just going on the road to see baseball games and we didn’t have a two-month agenda, it’d be entirely different. But because the film is a huge part of what we’re doing, it dictates an awful lot of what we’re doing and where we need to be. And then you throw the two-month timetable on top of that...and what we need to cover and I need to direct my dad through some of the silly little things we do from time to time -- the movie needs it!
We went to a theme park the other day. We were camping right next to it in Cincinnati and thought the roller coasters with the peaks and dips were kind of symbolic of the trip so we decided to see if we could ride one. We went over the next day, I talked to security and asked to speak to their P.R. department. She was a wonderful lady, said yes right away and took us right over.
MM:
So you’re a good sport for doing all these things.
DC:
I try to be. It felt kind of good to do it. Not doing it, but having done it. I had never been on a roller coaster that big before and so I felt like I had accomplished something. But I kept watching people come off and nobody looked like they were bloody or...
GM:
They had smiles on their faces?
DC:
Almost all of them. One lady had a real bad look on her face, but. I figured it was a personal thing. Everyone else looked pretty good.
RC:
We had about the nicest marketing person you could imagine.
DC:
Maureen Booth.
RC:
Maureen Booth. She just couldn’t have been nicer or more accommodating. And totally on a whim. It wasn’t like we called ahead.
DC:
She said, “What can I do for you?” That was her opening line. And it’s certainly a good metaphor for the trip we’ve been on. We’ve run into some very special people. And you all are a part of that.
RC:
Absolutely. Different people have different reasons for connecting I suppose. We do ask, a lot of times, for people to contribute or donate. We’re constantly...I walk into a restaurant and say, would you mind donating a meal? And I can tell right away if they’re listening or if, the one that hurts my feelings and I try to detach from it, is when I get that look like they’re saying, “You’re trying to scam me” or “What are you trying to get away with?”. And I show them, here’s the tax-ID number from NPF, here’s the card with all the sites, here’s my dad. I don’t know what else to show you. You could go check the web site. I hate having to defend the project.
MM:
You wish they’d just say no.
RC:
Exactly. But you know when you meet the right people, because there have been an awful lot more good than bad experiences out there, I walk away with the feeling like, I’ve given them as much as they’ve given me. They are so happy to give. When people are properly aligned. I know, in my life, when people ask me for something and I can give I love to be in that position. It’s very fulfilling. And I think it’s a very core human thing to give. But often people don’t know how to give or what to give to, that’s going to do good. Or that isn’t going to be a scam. We experienced that with our very first event. We had 107 people there and there was this really powerful feeling of community. People certainly got their money’s worth.
DC:
They kept thanking us for inviting them.
MM:
Isn’t that nice?
RC:
And we raised a good amount of money. They got the game, the food and the community experience. And that’s the kind of thing you can’t put a value on, like you were talking about. It’s the same thing with any kind of community experience. You feel like you’re part of something special.
DC:
And they were.
RC:
Yeah, and we were, too and we were the facilitators of that so there was that much more to it.
DC:
Sometimes it’s about just allowing to happen, instead of making it happen.
RC:
I get down or hurt or angry on this trip from time to time. Today was a hard day for me. But then we get reminders like Jack was a great reminder today. He made a big deal about “What a neat thing you guys are doing” and I think he was kind of speaking about his son, like he would like to be doing something like this with his son. And we’ve gotten that from other people, other fathers and sons we’ve run into. And...I got an e-mail last night that just...really...It really shook me up a little bit. But it reminded me when I was feeling kind of down or really tired...it was about two in the morning and I was like, “God I’ve gotta get up at six and we’ve got to get to the game and a bunch of things aren’t settled.”
A friend of mine emailed me to say “Hey Bob, just wanted to tell you how happy I am for you that you’re doing this trip. My dad passed away about three weeks ago.” And it’s like it’s really important and meaningful that you’re doing this.” And those reminders that this important, not just for us, but for other people, too because they get life force and energy and inspiration from all the things we’ve done in the same way we get it. We are passing along inspiration...and that’s very meaningful.
I prayed for peace today. I meditate before I eat. I can never take those moments to breathe enough and this, being out here, is an answer to that. Especially being out here on the lake. Lakes have always been very special to me. So thank you guys for providing peace. I feel so much better than I did before I came here.
MM:
You’re welcome.
DC: (To Gary)
What did you do for a profession?
GM:
I taught math at a vocation school. About three years ago. We were married 15 years ago, and what? 14 years ago, six months, we got the diagnosis.
MM:
When you first find out, it isn’t that big of a deal. Well, it still isn’t because Gary makes it easy. But, at first it was like, Parkinson’s? What’s Parkinson’s? So you’re just getting a little slower? That’s fine. We can do slow.
RC:
Were you scared?
MM:
No. I don’t think we were. We cried, but it was more because he had something. We didn’t know what to be sad about. Because he still worked. We had the kids. Life went on, everything was fine. But it’s little things. The little increments that change it, that: “Oh that’s right -- you’ve got Parkinson’s.” Because you start to live with it and you don’t see it anymore. I remember the first time his head tilted and it was like, “Oh, Parkinson’s.” We laugh about it and we’re very fortunate to have friends who will laugh about it and talk about it. They’re not afraid of it. I think it’s probably harder for our kids. Because when they come home they see the next jump. The day-to-day, you don’t see it.
RC:
I noticed a little of that. A the beginning of the trip I had a hard time with my dad -- I was taken aback a little by the slowness and some of the lack of coordination occasionally. I found myself for almost a week or so keeping an arm out.
DC:
Because I looked unstable.
RC:
Yes. And I think as much as anything I was projecting my fear on to that because you know, the worst thing in the world is if something happens to dad. Mom’s going to kill me if I let you fall down. But, Dad’s always been a strong guy. He has a little bit of difficulty lifting or pulling things down but I don’t know how you get ready for Parkinson’s other than you see it and accept it -- it is what it is. We talked about that changing of the guard thing with me making more decisions. That was somewhere, again, where I saw myself and said, okay I’m taking over that because...that’s part of my role in terms of this trip.
GM:
We went to Nepal. And for some reason the Nepalese people just stared like crazy. They’d turn around and watch us go until we were completely out of sight. And if we’d go into a restaurant, there would be like 20 people outside to watch me walk out. And that was like five years ago. That was when I wasn’t nearly as bad as I am now. I felt like I was actually pretty normal. But they would just stare like crazy.
RC:
They don’t have Parkinson’s?
GM:
I don’t know. I never saw anyone with it. But they sure looked like they never saw it before.
Park Number 15 (of 30), Metrodome
Minnesota 7, Tampa Bay 5
WP: J. Romero (5-1) LP: T. Harper (2-2)
Sea 4, Oak 2
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