“My dad’s neurologist is transparent and compassionate. He is thorough and truthful. If yours is not, I highly suggest finding one who is.”
In the introductory sentences, the caregiver says that her dad has a great neurologist. She then recommends that you find another neurologist if yours is lacking. This was a response to a question posed that went something like: “Did your neurologist tell you how bad this disease would get? Did they tell you how debilitating it could be?”
Some will answer “yes” with as many others answering “no.” The biggest problem in finding an exceptional neurologist is that there aren’t many around. To make matters more difficult, what we really need as Parkinson’s patients is a movement disorder specialist and they are even more difficult to come by.
When I first began my Parkinson’s disease journey, I had the best neurologist I could have hoped for. But times change. After 14 years my doctor moved on, and it was time for me to let go and move on myself.
Looking at the question posed above, I would have to answer “no.” My first neurologist, who happened to be a movement disorder specialist, didn’t tell me how debilitating Parkinson’s disease could be. Neither did my second, third, fourth, or fifth neurologist/movement disorder specialist. They all were focused on the present — what was going on now, not what might take place. I am not so sure that I would have wanted them to tell me.
For one, my thoughts were already taking my fears to a whole other realm. I didn’t need my neurologist to assist me further into the deep dark, thank you very much. I was doing quite well getting there on my own.
Secondly, and maybe more importantly, doctors aren’t gods. They have no magical powers. They don’t have the ability to tell your future. They personally can’t tell you, with 100 percent certainty, how far down the road your disease will take you. They can make guesstimates based on their experience treating other patients. We think we want them to tell us what our future holds. Or do we?
In some cases it might be good to know how debilitating this disease can be or how bad we may get. However, I cannot think of one reason why I need to know, other than that it may enable me to “prepare.”
Why give news about something that potentially may not come to pass? We don’t all end up in a wheelchair, nor do we all have tremors or lose our balance. Some of us will, but then again, some of us won’t. We don’t know which of us will have to deal with what, so why borrow trouble from tomorrow when today has enough troubles of its own?
It is good to prepare for the future but not get carried away with where it might take you. Be in the here and now, enjoying each moment of each day, and begin with today.
Some may say I have my head in the sand. I don’t think so. I know very well what could come my way and probably will come my way. But I choose to live hopefully, one day at a time, for I would rather be hopeful than hopeless.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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