Well, AnnT, it looks like I’m late to this discussion, but Carey alerted me to this thread, and I have read every post. I don’t have much to add, but as I wait for the meds to kick in again, which seems to take half the day now if I cycle off (12+ yrs post dx so I’m fortunate that the meds work as well as they do), there are a couple of things that occur to me about being a “stranger to myself.”

First of all, it is true that to some degree we become “strangers” to ourselves, and this probably increases as time passes. As the disease “progresses” (what heartless doc chose that word to describe the gradual implosion of self that is PD?), one reaches a point where saying “I don’t feel like my old self” must in some measure give way to “I am not my old self.” The extent of physical and cognitive deterioration becomes so intrusive, takes over so much of who “you” are, that one day you look around and you realize you don’t live in the world as you once did. You don’t see things quite the same way, because you are looking with different eyes. It is hard to put into words, but one’s “soul,” who one is, changes.

I am not talking here about the “I am a better person for having PD” change that we often talk about. That kind of change is real and true for many people, and I definitely include myself among them. I can, and have on this forum over the years, count the blessings bestowed and the lessons learned that can come with a serious illness, whether chronic or acute. I think I am more tolerant, that I care more about others, have learned to love more deeply, and am much better at figuring out what is important in life and what is a waste of time. Serious illness, if one is lucky, has the capacity to make one appreciate like nothing else can that our time on earth is limited and we would be wise to not squander it on the petty concerns or glittering nothings that tempt us away from ourselves. A special circle in hell should be reserved for the people who dreamed up “Reality TV” as a simulacrum for reality.

I think the “better person” changes that can come with PD have much more to do with a conscious reappraisal, or maybe the first real conscious appraisal, of what life is all about and how we might best use the remaining time allotted to us. In other words, it is self-conscious. The knowledge that we have a serious illness often leads people to change their way of thinking. The simple knowledge that we have PD, whether we are particularly symptomatic or not, often grabs us by the scruff of the neck and shakes us up in a positive way. We choose to look more closely at life, our own and that of others, because life has become more precious to us.

What I think AnnT is talking about is the person we become regardless of our intentions or positive thinking or optimism. It is not self-conscious. It is not a choice. It is the result of the accumulation of physical and cognitive losses that mount up over time and eventually twist us, no matter how hard we try to hold on to who we “are,” into someone undeniably different. Who we are increasingly becomes who we “were.” The soul, for lack of a better term, can only endure so much suffering, so much torment, so much increasing disability and loss of independence, before it becomes undeniably different from what it was. Our friends still recognize the person they have known, but we cannot deny that suffering and disability has taken a toll on our “selves.” The self is in some measure different, and that difference cannot be reversed.

Ever the honest person she still is, AnnT says I look in the mirror and I do not see “myself” anymore. More to the point, I see someone who is less. Less than what I was. Less than I reckoned I would be at my age. And I do not like the change. In fact, I hate it. And she is right to hate it. After a certain point, Parkinson’s Disease begins to take the form of the irresistible monster we feared it might become, and from which we hoped we might escape. The brutal truth is that for several hours each day my medications do not work and I am “off.” My face is completely without expression and with stooped posture I see the image of a moron when I look in the mirror. Much to my horror, I am noticing that it is sometimes difficult to think clearly when off. While “off” I literally can do nothing but sit and hope that in an hour or two or three the meds will kick in again and I will be able to get up and walk without falling over.

AJ and I recently watched a videotape that she made in 2000 for Northwestern University about her PD. In it we are both interviewed. We were both disturbed to see the difference in ourselves then and now. In some ways we were both looking at strangers. Strangers with our faces.

So is there any upside once one has reached such profound disability? I would maintain that there is. For me, the upside has largely been a return to books. I can still hold a book and read when I am off. Books I never thought I had the patience for I now concentrate on closely to distract myself from stiffness and rigidity that might otherwise seem unbearable. I have time to think about what I read, and to make connections I would otherwise have passed over in haste as other matters competed for my time. When I am off there is nothing competing for my time, because there is nothing else that I can do without real risk to myself. It is a small compensation for my discomfort and disability, but it brings real pleasure, and I am gaining a better understanding of and curiosity about the world around me. I would rather be cured, but you take what you can.


Like Paula and Carey and Carolyn I still am substantially engaged in PD advocacy. It gives me strength and hope. I have watched a generation of people disappear from this forum into the twilight of late-stage PD, and in my heart I now fear that I may eventually disappear as well. But I will not have “gone gentle into that good night.” There is still time ahead, and I intend to make what use of it I can.

Thanks for a great thread AnnT.