Young Parkinson’s Sufferer’s Impassioned Response to “Lies” PostFebruary 17, 2013 - Author: Alva - Comments are closed
Sunday, February 17, 2013
Dear Alva Harris,
… I read your post #8 [ “Lies” ] and I agree. The conflict of goals for treating Parkinson’s needs to be fully discussed when making choices about what to take and how much. At some point the quality of your life is much more important than the number of days of stiff, slow, tremoring, painful movement you can string together.
I had a deep brain stimulator put in on the right side of my brain last month. Finally, after letting people pound a hole in my skull, I was sent home with the instruction to tweak my medicines as much as I could to feel as good as I can. That is pretty much what all we people with Parkinson’s need, the permission to explore how to feel the best we can on any given day. Let me say, this thing makes me feel good, so good that I could forget for hours at a time that I have this condition. It makes me feel so good, that I sort of wonder why they don’t promote it more on basis alone.
Dr. Harris, please go gently on yourself for lying to your father. You were trying to spare him anxiety. There is not really such a thing as false hope. The hope is true even if the thing a person hopes for can never be. It was probably too hard to deny the hope in him or in your own heart.
That comment you made about five doctors having conflicting goals, I am going to make sure that that problem stays in the conversation of what people with Parkinson’s disease need. Thank you for your openness.
I hope that in your last days, you can find comfort and peace.