Tonight we met a couple who have just received the diagnosis, Parkinson’s. It was their first time at the Parkinson’s Disease Support Group. I will speak only in general terms since I did not ask for permission to discuss their situation here. As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.
The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come. There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.
Information was hard to come by. What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either. It isn’t that the disease had not been identified long before 1987. The Neurologists we went to at first were not specialists in Parkinson’s. Their staffs knew only the basics. Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.
During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic. There we discovered a Neurologist and Staff who actually knew about Parkinson’s. What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know more about Parkinson’s than the Neurologists and their staffs there.
Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms. I have talked about this before in other posts on this blog. The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?
We talked tonight about the challenges that lie ahead for this couple. They have worked very hard at anticipating and preparing. They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed. They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease. Their situation is much more challenging than ours since both of them are dealing with physical problems. The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.
With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come. When Mary Ann was diagnosed, we had no idea what we were getting into. We did not have but a tiny fraction of the information these folks have. The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.
The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now. Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!
As we have lived out each day for all these years, we have used common sense based on the information available. We found our way to a good doctor. We paid attention and tuned in to the treatments and medications and reasons for them. We went to the symposia and continued to read and learn. When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so. At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.
We could not and cannot know what lies ahead. We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold. We can only do what we have the knowledge and resources necessary to do them. That is more than enough to do. Yes, it means thinking about financial issues so that things are in place to the degree possible. It means developing contingency plans within reason. We cannot cover every potentiality. We simply can’t. We have had to accept that. No one can know what lies ahead, nor is it possible to have every base covered.
The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come. There are no guarantees in life. I am hardly the first one to come to that conclusion. It is a truism. By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.
The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.
What lies ahead? We have some clues, but only clues. We won’t know what actually lies ahead until it happens. Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.
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The Caregiver Calling 