You're blessed to have an incredibly supportive family. You invited your daughters, Vicki's kids and their spouses to talk about how these diseases have affected you and your life. Were there any surprises in what they said?
There really were no major surprises in terms of how they dealt with or are dealing with it. After the initial diagnosis, and sitting down with each of the offspring. It's clear that they are sensitive to its reality. They're incredibly supportive... We have strong contacts on a day-to-day basis with all the offspring and I think that kind of support is also helpful.
So, this is a disease where people may feel increasingly isolated and overwhelmed and it's particularly true in the offspring."¨Communication continues to be a major issue, not only with our offspring but [with] colleagues and neighbors and folks. We have to realize that, yes, it's frightening but controllable.
That leads to my next question: there are 1.5 million Americans with Parkinson's and over 600,000 under 65 with some form of dementia. Those are big numbers. As you pointed out, individuals and families feel increasingly isolated and overwhelmed which actually is an already bad situation. Do you have any advice for those families?
I have used the word "empowerment" throughout much of this discussion this morning. And the ability to convey a balance of hope and optimism with daily support underscores the fact that you don't have to undergo this alone. People want to help you through it. You have to be somewhat pro-active, though. There are definite benefits from being pro-active and integrated into the kinds of programs and daily one-to-one activities.
You don't need to be a Rhodes scholar to take care of patients with dementia... Acknowledging that this is a long course in which there are pieces that are very positive that I would not have experienced if I didn't have the disease. That's a positive from a negative... And yes, it's frustrating for me, for us to have this conversation; I tell you that it's a struggle.
You were happily married to Caroline for many years before she died in 1998 of colon cancer. You began exhibiting the symptoms of what turned out to be Parkinson's and dementia and, within a relatively short time, you embarked on your second marriage, to Vicki who has never really known the Old Tom. Do you feel that you and your family got a raw deal?
Well, I'm not sure who to blame it on! Yes, I do feel some days that we got a raw deal. And yes, Vicki, several months into our marriage, awoke one morning and said, "There's something wrong here. What's wrong with this picture?" And it's taken a lot of psychological support and work to deal with [this]. It requires as any chronic disease patience and commitment and support I keep repeating the same theme.
Until your retirement, being a doctor very much defined you. The single most outstanding and defining characteristic was your ability to listen closely and carefully. Since you wrote this book, you have become the recipient of hundreds of emails, letters, and phone calls from people who want to share their own stories. In some ways, you have redirected your skillful listening to this whole new group of people. How does that feel?
It feels great! People frequently come up and say to me, "I really enjoyed reading your book. When are you going to write another one?" And I say, "Let's deal with this for the time being." What's amazing to me, I just came back from a conference in Utah - 300 physicians and they want the answers. So, I can give them some answers on how to deal with this.
But basically it's having support and staying vertical. We had more responses than I could ever think. And I've gone through all of them and we're now trying to develop a group of several hundred for which we can define what is special about this group of people. What can they teach us, as physicians? And while I'm not playing with a stethoscope on my chest, I can hear and listen to people and that is, of itself, extremely supportive. And people say, "Keep working at it. Keep working at it." I'm still functioning as a doc in some ways, and, in some ways, more in depth than I had when I was practicing clinical cardiology. I appreciate the opportunity to touch base with you on this.
I learned so much from reading your book. It's been a pleasure and an honor to speak with you, Tom. Good luck to you.
Thanks again Tom: for your enthusiasm, commitment, courage and generosity of spirit in offering to do this interview and battling your way through it. Also, for your considerable patience, both during the interview and awaiting the end result.