Interview: John Trudeau
As our last visit with him was so quick (we got in late after the game on July 15th and left his house early the next morning), I asked John if we could come back so that we could capture his story on camera. He agreed.
BC:
So how long have you had Parkinson’s Disease?
JT:
About 14, 15 years.
BC:
What other medical issues are you dealing with?
JT:
Diabetes. Lymphadema.
BC:
Was Parkinson’s the first of your medical difficulties?
JT:
Yes.
BC:
Do you have any kind of awareness as to how you got Parkinson’s?
JT:
No as far as I know it’s just pure chance, act of God, whatever. I understand it’s not hereditary. No one in my family has it. My mom was an orphan, so I don’t know what her parents had. But far as I know, there’s no one in my family and from the research I’ve read, they don’t think it’s hereditary. There’s some thought as to some chemicals in our systems that we were exposed to because Parkinson’s is getting more and more common and younger and younger people are getting it. You know so, back to “Act of God”. If you want to get mad at him go ahead but it’s not going to change anything.
BC:
What was your initial feeling when you were diagnosed?
JT:
Partly, what’s Parkinson’s I had heard of it but I really didn’t know anything about it. At first it was, well I’ve got a disease but, I can’t do anything about it so I started educating myself about it, reading and such.
BC:
What did you for work do before you were diagnosed?
JT:
Before and for about ten years after I worked for Xerox. Service. I repaired fax machines, printers all kinds of things.
BC:
Why, 10 years later, did you not--
JT:
The Parkinson’s gradually got worse. It was harder and harder to do the job. And I was driving a lot. And I became a greater risk to myself and others by driving a vehicle. The symptoms got worse. The pills took longer and longer to help. So I stopped working.
BC:
What has the process been like seeing elements of your life dropping off, like driving a car, because of the disease?
JT:
Transportation -- I don’t get around much. I spend most of my time in or around the house. I feel very good about my health aid, Ramona and I have many neighbors...my neighbors have been a Godsend. I’ll call at two o’clock in the morning and they’ll come help. So I’ve found John Q Public, unlike the common perception of, you know, “people are out for themselves and don’t help out others”, I’ve found John Q Public to be very understanding and helpful. People I tell that I have Parkinson’s and I have a problem, people stop and help me.
BC:
Was that a surprise to you?
JT:
I wouldn’t say it was a surprise, just an observation. I never expected to need help from the neighbors, strangers and others. But it turns out people are better than the public perception gives them.
BC:
You said something to my dad: “Don’t let the disease eat you”. What did you mean by that?
JT:
Try to maintain your humanity. Try to stay above the disease. Try not to let it overwhelm you and devour you and control you. You know, eventually it gets worse, but try to maintain your humanity and your kindness to yourself and others.
BC:
What was your thought process in inviting us to stay with you, as you didn’t know us, when you heard about us coming through?
JT:
You know, you need a place to stay, I have empty bedrooms. I can stand some company for a night. It was nice to have some other people in the house. And that was it.
BC:
How is it you’ve been able to maintain your humanity?
JT:
I try not to let the disease get me down, depressed. Sometimes it does, sometimes it kind of owns you. But generally I try to maintain an outlook of, I didn’t do anything to cause this. I didn’t smoke and get lung cancer, so I can’t blame myself. So I just try to do the best I can to get on with my life. The disease controls me somewhat in that when I’m stiff and frozen I can’t do, you know, take a shower. I can’t do common functions. So when I’m feeling good, an “up cycle” as they call it, I, uh, it might be two in the morning, but if I’m up I take a shower. You know, so I do things...I don’t let the clock rule my life. In that regard the illness rules me. So I have to give it that. At certain times in the cycle I can’t do things. So I try to do what I can when I can.
BC:
You also make crafts?
JT:
I do a little wood working, not as much as I used to. I do small jobs and I make little memento pens I give to people.
BC:
What makes you happy in your life these days?
JT:
Um...good question. A good “up cycle” when I’m active for two or three hours. When I’m feeling good and when I’m up and I can forget about the disease for a few hours. It always comes back. I always go through another down cycle. I go through like six a day. But for two or three hours your joints feel good, you feel limber, your muscles are working and you know you can do things.
BC:
How much does it help you to have the community aspect?
JT:
My neighbors...I couldn’t make it without them.
BC:
Is the socialization that important?
JT:
Somewhat social but more, you know, I would never...if not for the illness, I would never had gotten to know a lot of my neighbors. Nobody sits on the front porch anymore and says hi to their neighbors. A lot of my neighbors offered to help me when I needed help. I’ve even had teenagers come and help me. I’ve had 70 year-old retired guys and teenagers. And I’ve gotten to know a lot of them. They come over for an hour and we sit and talk. So that’s, the fact that I can get help from them is, very valuable or I’d be in a home or something.
BC:
Has having Parkinson’s helped refocus your life in anyway you can think of?
JT:
i can’t really think of anything know. That’s a neat question but I don’t really have a philosophical answer for you.
BC:
Do you see things, maybe five years from now what your life might look like or do you try not to think about it?
JT:
That’s one thing that drives me a little nuts is I don’t know what the future is going to look like. When I was working I used to think, well, I’ll retire when I’m 62 or 65 and then I’ll travel or whatever. You know, I’m 56 and right now...thinking about five years from now I can’t hardly imagine. And that’s...one of the things that probably drives me nuts is I don’t know what’s going to happen one year or two years from now. The disease progresses at different rates in every individual. You never get better, you get progressively worse. How much worse and how fast it happens is different in each person. So I don't know where I’ll be 12 months from now, let alone five years from now and that’s one of the things that keeps me up.
BC:
Are there any regrets you have because, for example, you talked about waiting to take those vacations?
JT:
Well, I have two sons and at that time your life revolves around your family. Now my sons have gotten through high school and college and are starting to have careers in their lives. If I had avoided Parkinson’s -- I wish I hadn’t gotten it, but there’s no changing that. You got it, you got it.
I have found in this country, if you’re going to have a problem you’re better off on workman’s comp or in a car accident. In those cases the insurance companies takes care of you. If it’s an act of God you’re on your own. So in that regard, it’s too bad there’s no help to speak of. You’re on your own. If you don’t have people to take care of you, family, you’re out of luck.
There’s over one million people with Parkinson’s, more and more are younger and younger. I think eventually it’s going to become an issue for the nation because you know somebody that’s frozen stiff but whose brain is alive you can’t very well euthanize. The care for most of those people becomes cost prohibitive. So that’s going to become a problem.
A few years ago, people died of heart disease or other things before the Parkinson’s got too bad. I came down with Parkinson’s at 40 and a lot patients are getting it younger and younger. So that outlook is not pleasant to think about.
BC:
With everything you’re going through personally, you’re still able to consider this on a larger level -- a national, perhaps even international problem.
JT:
People worry about the AIDS problem nationally and internationally but the Parkinson’s problem could be even bigger because Parkinsonians don’t die off (as quickly). Their body just freezes up. They can’t control their muscles. You’re talking about health care for a lot of people for a long time. Who’s going to pay for that? t’s kind of funny, I get ads from people trying to sell me nursing home insurance. And a quick way to get rid of them is tell them you have Parkinson’s. They hang up on you.
BC:
So they have no interest in a Parkinsonian because of the amount of care?
JT:
Yeah. Guaranteed loss with a preexisting disease like that. If you’re not in a group, you can’t even buy health insurance. You’re a guaranteed major loss. They see a disease like that? Forget it. They hang up.
DC:
That says a lot right there.
JT:
If you’re not in a group, you can’t buy insurance. There’s no company that will sell it to you. Because you’re a guaranteed major loss. If you’re in a group, they’re stuck with you. Other than that, you’re out of luck.
BC:
And how does that leave you feeling?
JT:
Well, not too good. They put my medicare, after two years, on disability. And I’m on my wife’s insurance as well, but her insurance won’t cover me because now I’m on medicare. Medicare doesn’t pay for very much. My medication alone runs over $12,000 a year. Without insurance. Who’s going to pay that? I can’t pay $12,000 a year. And without the pills...I almost feel like I need to write my congressman and ask: Do you want me to go in a corner and die quietly? You won’t pay for my pills. You won’t pay for health aid. I can’t pay those bills. Who when they’re 20 or 30...we all put away money for retirement. But you don’t plan on going on disability when you’re 50. And your earnings stop. And your annual increases stop. And your disability is paid out at 60% of your earnings when you’re working. You stop getting increases so inflation eats you alive. And if you have kids in college and such...financially it becomes a problem.
BC:
The thing that keeps resonating with me is that if something happens to you, anyone, that is, as you’ve called it, an “Act of God” that you’re left out on your own.
JT:
You can’t very well sue God. No court’s going to serve an injunction on him. So you’re on your own.
