When dealing with the unknown, it pays to have your doctor on your side
I have a lot of doctors. On my payroll, actually on Medicare’s payroll, is a primary care physician, a cardiologist, a urologist, a dermatologist, a therapist and a neurologist. To make it even more confusing, they’re all affiliated with different hospitals.
After writing about Parkinson’s Disease on Tuesday, I wanted to follow up with how important it is for anyone with the disease to have a good neurologist. You need someone who will generously give you their time and answer all of your questions. Most importantly, you need someone you can trust. You would think that would be the most basic care you should get from your doctor, but sadly, that’s not always the case.
I’m now on neurologist number three. That sounds like a lot but compared to the number of primary care docs and therapists, that number is nothing. Hmmm…with all the changes, I’m beginning to think it might be me and not them
Number one was when I first started showing symptoms of Parkinson’s. We were in the middle of running a series of tests when he had a stroke. Truth is almost always stranger than fiction. Although he recovered, he decided it was time to retire.
We started from the beginning with neurologist number two. He reran the same tests and eventually came up with the Parkinson’s diagnosis. That was ten years ago. We set up a plan on how to deal with this and he left me with the following words:
“I know this sounds bad, but you can live for a long time with this. It will change your life, but it’s not a death sentence. Most likely you’ll die of something else. It could be much worse. At least it’s not ALS.”
Looking back on this, I’m not sure if those were the most comforting words for the situation. I guess I was okay with it because I kept seeing him for nine years. Actually, we bonded more over our love of music than we did about a neurological condition. He loved classical music while I’m a rocker. On each visit, we exchanged a piece of music we thought the other person would like.. He never sold me on the four B’s while he never understood my obsession with The Beatles.
Our appointments were once a year unless there was an emergency, and that happened only one time…and it wasn’t really an emergency, just me freaking out over something. But, in the spring of 2021, he told me he had had enough of the medical business. Covid and Zoom wore him out. It was time for him to retire.
The search for Neurologist number three was on.
I had a couple of recommendations but neither one was taking new patients. Neither were any of the other neurologists that I found on hospital websites. I guess it was a good time to be a neurologist, but not so much for new patients in need of one.
After a couple of months, I was on the verge of giving up. However, I knew doing this on my own wasn’t a good idea. I called one of my contacts at the Parkinson’s Foundation. She hooked me up with someone at Rush University Medical Center, who gave me the choice of a few neurologists. I did some research, picked one and as Jackie Gleason used to say, “And away we go.” WOW! That even sounds old to me.
When I saw her for the first time last summer, I was expecting a short introductory visit. More of a get-to-know-you and see if it’s a match-type thing…almost like a first date with someone from a dating site. Man, I was wrong about that.
Yeah, there was some small talk, but that was followed by two and one-half hours of mental and physical testing. When we were done, she had already enrolled me in an occupational program, and then she detailed how we would proceed moving forward. I was stunned because I had never seen this before with any of my physicians. Over the next few days, I raved about her to my friends and family.
Since then I’ve seen her two more times. Actually, she originally wanted to see me four times a year and when I proposed twice, she just said “whatever works for you.” The last time I saw my neurologist was last month. When we first started talking she already knew I had had two surgeries since our last visit. I was again stunned since neither was done at her hospital. She even realized the kidney stone removal was done on my birthday. Her comment about that was, “What a shitty way to spend your birthday, especially such a big one.”
When I mentioned that the occupational therapy exercises were working and would probably be even more helpful if I did them on a regular basis, all she said was, “ I know it’s hard to find the time and motivation to do them but try to work at it.” No guilt at all.
Then she put me through more testing and exercises which left me exhausted at the end of the session. But when we were finished, my first thought was this person is going to be on my side through the good and bad of the disease. She’ll be my advocate no matter what happens in the future. I can see her as my neurologist until the end, which hopefully won’t occur for many years.
It’s special when you have a physician like this. I wish everyone, no matter what issue/disease you’re dealing with would have a doctor like this on their side.