Let me give you a few "bullet points" about the whole process, okay?
A major issue that I faced early on was denial. I was uneasy and frustrated about how the book would be accepted. That became an element of denial during periods of time when it was clear that we needed some optimism."¨You can't go this road without both a sense of humor and some optimism. And concurrently, we need to deal with the reality of survival [for] a caregiver and the importance of the family unit. I think we've underestimated how important the family unit is. There has to be adequate time not only for the caregiver but the caregiver's family. Having physician/patient, physician/family interaction is extremely important...And finding if there is an individual out there who can function as my advocate. I use the mantra "stay vertical." That's what I communicate and I think each day to a variety of people. You have to keep yourself in the game. You've got to deal with burnout, which affects all of us in this situation.
Denial, as I just mentioned, is a major defense mechanism. Social isolation is a common emerging problem with patients who have this disease. We need to get our loved ones out of bed in the morning and empower them to have productive elements [to] their day. So, each day brings a challenge but we give our patients and our patients' families the empowerment and do what we can to minimize social isolation.
It's important to emphasize to patients and families that while these diseases are not curable at this time, they are fully manageable. Medications necessary to control the symptoms are now readily available. But medications are only a part of an organized program including diet, exercise, and psychological support. I think we need to view chronic debilitating diseases as a long journey, with every right to be optimistic. I believe that hope is crucial to outcome and that the loss of hope summons despair. To deal with the daily struggles, we need optimism and a large allocation of humor. Perhaps [most necessary] in dealing with chronic disease is a human physician who is capable of listening to my story in an empathetic and unhurried manner. The key here, I think as we all realize, is unhurried. And to learn - to practice - being a listener.
Intermixed with the whole process is fear. And fear can become an invasive process that affects all of us, especially those with chronic health issues. Being a partisan patient means the reality of acceptance of increased dependence on others. The transition from physician to patient has been humbling. The need for long-term care is a particularly difficult pill to swallow. Regrettably, dealing with this disease is a full-time, 24-hour affair. It strips us of our former identity and replaces it with something distinct, somehow foreign that requires the understanding that we are in a continuous process of losing control. Sometimes, [it's] like a large chunk of ice separating from an iceberg, floating away, it is an inevitable reality.
You just covered a lot of territory.
Beyond the burdens of Parkinson's disease, you also suffer from Lewy body dementia. [In the book], you describe this condition, which has had a drastic effect on your thinking process. For those who have not yet read Life in the Balance, could you please explain how Lewy affects your thinking and the ability to express yourself?
Okay. The whole area of dementia is complicated and fearful. The day-to-day realities I have a couple of options. One is, I can sit back and whine and kind of have the "woe is me" situation. Or, I deal with the reality as it's affecting me. I don't know how much of my IQ has been affected by this process...The fact is that if you're sitting at home watching television and you're horizontal and not vertical, that's a bad situation. And we need to do everything we can to keep us in the game.
My experience is that [with] family members, when given an objective job, in the care and caring, it can be found to be a positive situation, instead of completely negative. Yes, it's very frustrating to be in situations where you can no longer contribute, in the traditional sense. I can contribute in a non-traditional sense by activities on a daily basis, and connecting with other people. I've interviewed a number of physicians who have these diseases and it's incredible how much information can be conveyed by individuals, by physicians, and by caretakers.
While some simple tasks have become much more difficult or impossible, you're far from throwing in the towel. In fact, you say repeatedly that you enjoy life. What do you to stay in the game and keep depression at bay?
Make sure that each day you get up at the same time. If you're used to getting up at six in the morning, it's important that that be a kind of benchmark for activities. I exercise each day, seven days a week, and I make sure and Vicki, my spouse, makes sure that I have a full plate every day of activities that are challenging. It sounds complicated or difficult; it really isn't, once you get in the mainstream and you see what activities are available. I'm heartened to see that there are materials to keep people physically stimulated and that's part of the emerging managing approach for people with this disease. I think occasionally it's probably good to have an unhappy day. You may then turn a mediocre or unhappy situation into"¨a positive one. And it gets back into patient advocacy. You need to have an advocate in the complicated medical milieu that we're dealing with. But it's doable.
I'm not going to sit back and bemoan my plight. Am I angry about having this disease? Yes... Has it opened some doors and closed others? Yes. Don't waste your energy on anger. It's not a productive way to use your time and your effort... People ask me, what will my outcome be? I say that I can't predict the future; I can't do anything about the past. But I can structure what goes on, on a day-to-day basis...When I'm empowered, I have hope. When I have hope, I can have dreams.