Here is more of what Ben and Michelle have to say -
Q: Explain how you told the rest of your family, your children and your friends that you have PD?
Ben: I'm pretty blunt. I just put it out on the table and say here it is... I have PD and I can't do some things any more.
Michelle: The time of our getting together and moving in together was pretty hectic and blurry. I don't remember a lot about that time, but I told the kids at that time. They did much of the research on their own. I told the family and close friends as necessary.
Q: How did your children react to the news?
Ben: My daughter was 12 and knew that something was wrong. Being able to put a name to the problem was actually helpful and after a few months, it got to be just one of those things that you live with. Most of my symptoms were pretty well covered by the medications so I was able to keep going.
Michelle: Mine took it mostly in stride. We were still learning how to be a family at that point, so that news took a back seat. I didn't realize that they had learned much about it until my daughter chose PD as the subject of one of her school research papers.
Now, several years later, it comes up from time to time. I try to make them aware when we have things out of the ordinary that we need to accommodate (like when he's fatigued and grumpy after a period of high stress, or when he can't get back to sleep when teenagers get up and rummage around the kitchen at 3 a.m.), so that they learn how to be considerate. I have talked to them about it a little bit, enough to know that they have a pretty good handle on what it is and what our limitations are.
The bottom line, and the most blessed thing, is that they love him (and vice versa), and I have no doubts that they'll be here for us/him whenever we need them. It's taught them to be better people and has strengthened our family bond, in much the same way that our daughter's serious illness a few years ago pulled us all together.
Q: How did the rest of your family and friends react?
Ben: Everyone has been very supportive. I asked for some concessions at work so that I didn't have to be on my feet as much. For the first 4 or 5 years I was able to continue my job duties as a construction inspector watching projects building roads and water projects. But after that, I started to need to sit down and rest more. About 4 years ago there was an opportunity to move from engineering to planning and implement a Geographic Information System for the city that allows us to father information and answer questions about the people and infrastructure for future development.
Michelle: I would say that our friends have been largely supportive. I personally did not have a large circle of friends to begin with other than coworkers. "Being in a relationship with someone with Parkinson's" wasn't as big a deal as "being in a new relationship" at the time. We went together to a select group of coworkers to 'break the news' of our relationship, which was a big scandal at work for a while. (Coworkers dating aren't prohibited, but it's a small workplace and any thing out of the ordinary is grist for the gossip mill.) It was about the PD, but more about two people getting out of crazy, bad places in their lives and finding peace with each other. I think most people who were close enough to know what our situations were could definitely see a positive difference when we got together.
My family, on the other hand, has a medical background, so I knew that they understood the implications of the issue. There is also an age difference between us, which I was actually more concerned about as far as people's reactions. I was afraid that I would be criticized for my choice to enter into a relationship with Ben because of both factors, but I think they saw right away that it a good, healthy place for me and the kids (which is a big change from the last twenty years of my life), and it didn't take long for them to get totally behind it once they met him. (In fact, sometimes I think they like him better!)
Q: Ben, how do you foresee the remainder of your career as it relates to PD? Will you need to ask for more concessions in the future to continue through to retirement, or do you think you may have to retire early or go on disability?
Ben: You're really asking if I can make it another 10 years to retirement if I have concessions. I'm halfway there. I was 42 when this all began. I need to go to 67 to retire. I'm 55 now. The degrading of my physical abilities has been a matter of stamina. As far as my mental abilities go, I actually feel as acute mentally now as I did ten years ago. As far as adding other concessions from my employer, minor changes in equipment may be necessary to do my job. Some concessions are already ongoing. I recently changed to an ergonomic mouse in response to a joint injury and recurrent pain. You could also look at the way that they have handled some of my personal habits like smoking as a concession.
Do I see me making another 12 years? Most of the time. Do I think it will actually happen? Probably not. I'm glad that I have my disability lined up for when I need to take it. It takes the pressure off.
Q: Michelle, what made you decide to head full-swing into a relationship with a PWP?
Michelle: What makes anyone decide to head full swing into any relationship? I decided that I was going to set PD aside and go into this as I would any other relationship. I looked at Ben and saw an incredible man that I wanted to spend the rest of my life with. He's strong, even-tempered, loving, giving, fair, quiet, and incredibly smart: everything I'd been looking for in a partner. He was willing to take me, as flawed and broken as I was, and take my children as his own. I admired him, I felt very comfortable with him, and I knew that we could be good for each other, and I was right. I knew that PD was a part of him, but it was only one of his characteristics, like blue eyes or shoe size, not the thing that defines him.
If I had to choose one statement that stands out about Ben, it's that PD does not define him. He isn't a "PD patient with a job and a family", he's a man: a skilled craftsman, a valued partner, a beloved father, a friend, an amazing individual with hopes, dreams, skills, and emotions that also happens to have PD. I feel that if we choose a label like "PD patient" or PWP, it has the danger of becoming a very small box that defines a person, and the real self can get lost. When I looked at Ben, I didn't see PD, I saw Ben.
Q: Do you feel that those with Parkinson's, including Ben, are often defined by their illness?
Michelle: Unfortunately, yes. For outsiders, the most visible part of an individual is often the disease. As things progress, people tend to forge that there is a person behind the symptoms. One of the worst contributors to this problem is the facial masking. Many times when talking to patients it emerges that the most crucial thing they want people to know is to "Remember - we're still in here". At this point in time, I think Ben is able to hide PD really well, so most observers can't tell. His most visible symptom is the fatigue and energy crashes. He had some left side weakness and a slight limp prior to seeing his new neurologist, but a change in medication took care of that. I think one of his biggest fears, if I had to guess, is that people will define him by his illness.
I do believe that the hazard is even greater when those with PD begin to define themselves that way. We all know that depression is biochemically a part of the picture to begin with, and a very real hurdle. When patients are surrounded by people, well wishing or no, that are filled with pity and condescension for the illness; when the subject of every conversation includes reminders of the things that they already can't do or will not be able to do; when we focus too much on the tomorrow and forge to live in the today; it's all too easy to lose the hope that keeps up all moving forward. In every chronic disease, hope and the drive to get to tomorrow are key in keeping people as healthy as they can be for as long as they can. People who lose hope lose it all. There is countless evidence that human beings can literally thing themselves to death. I think we owe it to ourselves and to our loved ones, both as patients and as caregivers, to believe in that quality of life and to pursue it as long as we can. Look at the exercise studies - as long as you're using it, it takes longer to lose it. Hope works the same way.
Q: Michelle, what were some of your biggest fears about PD, and were you concerned about how it would affect your relationship?
Michelle: My biggest fear is, and always has been, losing him. All couples have to face that someday, no matter how healthy they are. Either of us could be called home at any time. I have a huge fear that, having waded through so much fire to find each other, any time we have left is too short, and very precious. I feel 'hungry' to be with him much of the time, and it comes from that feeling that we started late in the race and that time is shorter than we'd like it to be.
On the other hand, the view that those remaining moments are too precious to wast is a gift in and of itself. However, I am concerned that it makes me hang on too tightly, and I am sometimes afraid of making him feel smothered. It's hard to balance how you feel inside with how you react on the outside.
Q: In what ways do you feel that you may make Ben feel smothered?
Michelle: I talked earlier about killing hope by trying to be over prepared. In trying to make his life easier by anticipating his needs, I think there's a danger in 'mothering' him too much. It's a real challenge balancing being in tune with him and still allowing him his autonomy. Especially at this early stage of the game, there really isn't much he needs from me besides love and support.
Sometimes I think that by trying to be organized and prepared, I'm getting in his space and making him feel uncomfortable. I came from a very scattered childhood, and I have a real need to be in control of things to feel safe, so I tend to try to anticipate all the possibilities and prepare for everything. The fear and the emotion involved in loving someone who has health challenges drives a need to make everything as perfect as you can so that you can deal with what's coming. I recognize that even as I sometimes get caught up in it. Where is the balance between taking pleasure in the fun of house-hunting for a new home with your best friend, and making sure that you're looking at walk in showers, easy access bathrooms, and wide doorways? It's easy to get lost in that, and even easier to make your partner feel uncomfortable. I struggle with it every day. I can't just put it away as easily as Ben can. Then again, he's had a lot longer time to internalize the reality and come to terms with how he wants to live with it.
Q: Did you do any research on PD, and if so, what resources did you use?
Michelle: I did a lot of research, primarily online and through books. When we decided to join our lives together, this disease became mine too, and I've never been one to sit idly by taking things for granted. I needed to know what we were in for, and I wanted to know what he was experiencing.
I did spend some time talking to my primary care doctor about it. I had the nuts and bolts by then, but what I really wanted to know was how to know that I wasn't asking too much of Ben, given his energy levels, etc. I tried to figure out for myself what our 'norm' was going to look like, so that we could adjust our lives accordingly. I also wanted to be prepared for the future, with whatever complications might come along. I'm a long-range planner type of person. I still do a lot of research, stay active with the community, and try to keep my finger on the pulse of what's new in the PD treatment universe.
Q: Ben, did you/do you have any fears or insecurities in your relationship as a result of having PD? If so, what are they?
Ben: There are things that I can't do at certain times and I am still concerned that it isn't fair for Michelle to have so many restrictions on her life because of my limitations.
Michelle: Just to interject here for a moment. I don't feel like our life has any more restrictions due to his health issues than it has with my own. I keep us plenty tied down some days when I don't feel up to snuff, so comparing apples to apples, I feel we come out pretty even. I am very happy and gratified with our life!
Q: Can you be more specific about what restrictions are on Michelle's life right now?
Ben: "Honey, I need to go to bed and its 8:45." "No, we aren't going to go for a day hike to the top of Mt. Rainier." "No, we're not going to do the 5K walk." The restrictions of energy and ability have modified our relationship. I can't walk long distances. That's a restriction. When I'm tired, I have to go to bed. That's a restriction. I haven't felt many restrictions with the kids, other that that there have been things that I have asked them to do because I was too tired. I don't think it's really affected my relationship with them, and I don't believe that my lack of energy has affected my relationship with Michelle.
Q: How do the two of you work through the fears and all the unknowns that go along with this disease?
Ben: Michelle is very supportive and makes sure that we work around problems. She spends more time researching PD than I do. I feel like I have enough to do with making it through each day without spending time on the computer following up this weeks headlines.
Michelle: We communicate - communicate - communicate. We found out right off the bat that the lack of it was what hurt us the most. The other partner can do plenty to fill in the blanks with misunderstandings if one of you isn't talking, so it's important to talk about the serious stuff. Don't leave the other person guessing!
We're also both engineers, so we tackle our problems like any other problem: very linear, towards a solution.
Michelle and Ben have both done a wonderful job of letting us peak inside their world, but it's not over yet! Next Saturday we will have more of this remarkable interview. Come back for Part III, the final interview, and find out what they have to say about Obama-care, celebrities, and so much more!