Continuing with my thoughts from the last blog, with regards to neurologists and their determination of a patient's medical condition as being Parkinson's, how should they advise a patient and what should be provided so the patient has a better understanding of what he or she is looking forward to? At the very least, it seems to me, neurologists should provide a pamphlet with basic information as to websites that give good resource material for the disease. For example, the Michael J. Fox website, the National Parkinson's Foundation, American Parkinson's Disease Association, and Muhammed Ali Center are good places to start perusing the data.
As to the PD patient's I have talked to, not one has indicated that they received any written information regarding the disease at the time of diagnosis. It seems the neurologist is using the shock value of the diagnosis to avoid the emotional issues of dealing with a discussion about the disease. This may seem a bit harsh, but it allows the neurologist to insulate himself from the emotion and continue on through his day with his myriad of patients he or she has to see. It is not uncommon to require a disassociation to allow them to do their job.
What I am saying is that I understand the process. I think a pamphlet that they could hand out would provide a means of informing the patient and still provide the dis-associative effect. The other issue, is, of course, that the patient, after hearing the diagnosis, and specifically in my case, goes into a mental fog trying to understand what they just heard, and no longer appreciates what the neurologist is saying, if anything. I truly can't remember a word the neurologist said after I heard the words, "You've got Parkinson's." I believe there was some short discussion, but for the life of me, I can't remember any of it. Neither can my wife.
The answer to the question, then, I guess is, the neurologist maybe is appreciative of the fact that after his pronouncement of the diagnosis, the patient will not remember anything else and he or she doesn't bother to provide further information. It may take that second or third visit to get past the denial and accept the fact that there is information that you have to have to better handle your life with Parkinson's.
So I guess what I am saying is I have come full circle to respect the position the neurologists have taken with the caveat that I do believe a skillfully developed pamphlet would be of great benefit to the newly diagnosed patient.
Pat, This is a very interesting observation you have made about the dis-association made by the practitioner following the explanation of the diagnosis. Although I do believe that this is a personality aspect that would vary from physician to physician (some are more expressive about feelings, while others are not), I think there is a great need for a uniform way of providing quality print information to patients and caregivers after a serious, life-changing diagnosis such as this. I so remember the day I found out I had a Parkinson's Plus syndrome and it had quite an emotional impact. Thankfully, my neurologist was a compassionate individual who took a lot of time to share this information with us. Thanks for your blog!
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