I’m hard on the medical profession. Since 2013, I’ve gone through three primary care physicians, four therapists and two dermatologists. It’s not always my fault. A few of them left for better jobs in different fields. It’s just a coincidence that they made these life changes after meeting and treating me.
After each change, it felt like I was starting over….
I didn’t mention my multiple experiences in the world of neurology, but it was the same thing, different body part.
It began in 2012. I was at a Chicago Cubs baseball game with a friend. While walking up the aisle to the upper deck, I started lilting to the left until I walked into the railing. My friend, who is a pediatrician, looked at me strangely. I shrugged and said no big deal; I just lost my balance. He said maybe I should get it checked out. I blew him off.
A couple of months later I was at a Northwestern University football game with the same friend. Again, we were walking up a ramp to our seats when I once again started walking to the left. This time I hit a wall before I could straighten out my gate. This time my friend wasn’t as nice about this. He told me he was going to call me and bug me about this every day until I went to a doctor to figure out what was going on.
Although I never gave him the satisfaction of letting him know he was right, I realized something strange was occurring. Besides the walking problem, I had suffered a couple of falls. All of it scared me enough to try to get to the bottom of what was happening to my body. Enter neurologist number one.
He had me go through a series of tests that took a couple of months. He found a lot of things that it wasn’t. The tricky part was finding out what it was. Eventually, it was determined that I had Parkinson’s Disease. It was scary, but it could have been worse. This is what he told me:
“I know it sounds bad, but you’ll be okay. This will change the way you live, but it won’t kill you. You’ll probably die of something else before this gets you, but it should be a long time before that happens. Next time I see you we’ll work on some strategies to deal with this.”
Those were the final words I ever heard from him. A few weeks after this discussion, neurologist #1 suffered a stroke. He retired from practicing medicine. I began the search for a new neurologist.
It was another change and I felt like I was starting over….
I was also having some health insurance issues so it was recommended that I go to Stroger Hospital. State-run health care…OY! They recommend you get there at 6 am, line up for a couple of hours so you can get a low number. That may or may not get you in to see someone who will do intake….OY! I decided to get there at 9 am and take my chances….OY!
It didn’t turn out too bad. I was out of there by 4 pm. Seven hours to give them my vitals. At least I also had an appointment to see a primary care doctor….two weeks later. Sigh… a good thing I was forewarned. Good thing I brought a book.
Two weeks later, I met with the doctor. Oh yeah, even with the appointment it was a two-hour wait….yeah, another book. We talked for an hour before he was convinced that I needed a state-funded neurologist. I checked out and was told to call to set up an appointment for neurology. The earliest one was two months away. They said to check occasionally for cancellations. There were no cancellations.
I finally met with neurologist number two…Dr. James Miller. When I walked into his office, I was greeted by some classical music. It turned out to be Beethoven. He asked if I like it. I told him I was more of a Beatles/Rolling Stones type of guy. We decided to exchange favorite pieces of music from our favorite genres and talk about them at the start of each meeting. It was a good way to bond. We then got down to business.
All the tests that were done with the first neurologist were redone. I even had an MRI scheduled on what was Chicago’s coldest day in more than a decade. Because the appointments were so hard to get, it took close to six months for the man I was now calling Dr. Jimmy to make the diagnose.
Same thing, different place. Parkinson’s Disease!
Doctor Jimmy told me basically the same thing as the first doctor. We had an in-face appointment at the start of each year. He was also always available if something had changed or if I had any concerns. It was a great relationship for many years…..and then came Covid.
We had our yearly meeting in February of 2020, so when the pandemic hit I didn’t think much about how it was going to change our doctor-patient relationship. We weren’t due to meet for almost an entire calendar year. But in the summer of 2020, I received a phone call. Dr. Jimmy was retiring. I knew he had been thinking about it for a couple of years, but he decided to move it forward. He gave me a recommendation for a new neurologist, but I decided to wait to follow up.
At the start of 2021, I looked for the new doctor’s information but had lost the paper I wrote it on. Typical. No big deal. I’d find someone else.
But once again, it was a change and I felt like I was starting over…….
When it was time for my yearly neurology appointment, I thought about it but didn’t do anything. I was more concerned about Covid and vaccinations. I’ll get to the new doctor eventually. Occasionally, actually more than occasionally, my significant other would ask what I was doing about finding a new neurologist. I’d tell her it was on my agenda of things to do. Finally, about a month ago, I decided I needed to find a new neurologist. It was go-time!
I Google-searched neurologists. Every time I found someone who I thought I may be interested in seeing, there was a snag. Either they didn’t take my insurance or they weren’t taking on new patients. Frustrating! Finally, I emailed one of my contacts at the Parkinson’s Foundation. She got me hooked up with a nurse at Rush Hospital. The nurse hooked me up with a new neurologist….Number THREE!!
I finally met her on Monday. Actually, there were two doctors. I gave them my history, including my relationship with the previous doctors. They both then ran me through a series of tests that took a couple of hours. We then discussed what they found. They gave me recommendations on what to do next. It included occupational and physical therapy with an emphasis on more exercise. They have a holistic belief in treating Parkinson’s that includes less drug treatment until the point where it’s totally necessary. Cool….works for me. They also said we would meet every four to six months instead of yearly. When I said how about six months, she responded with whatever the patient wants is fine with them. COOL again!!! Definitely works for me!!
As I left, I told them I was relieved that I finally found a new neurologist. She responded with “Everyone should have a neurologist. See you in January.” Actually, I think it’s going to be sooner than January because I’m going to accept her offer for occupational therapy. It can’t hurt, right?
So yeah, it was another change and more starting over, but people always say that change is a good thing. My cynical self usually says to myself ‘yeah, right’, but it was true in this case. Even after only one appointment, I have a feeling this relationship may go on for years to come…knock on wood. As Louie said to Rick at the end of the film Casablanca, “I think this is the beginning of a beautiful friendship.”
Filed under: Parkinsons