Saying goodbye to my doctors leaves me sad, but grateful

Well, it was bound to happen at some point, but my neurologist is moving away, and my primary care doctor is retiring. It feels like two members of my family are leaving me, and I cried with both of them when I heard. Even though I spend only a few hours a year in their physical presence, like dear family members, they are always there when I need them, and both are wise, patient, and reassuring.

For the past 12 years in particular, these two exceptional physicians have been at the core of my healthcare, which has involved complexities beyond Parkinson’s disease. They have been a vital part of my healthcare team, one I have spent a lot of time cultivating.

I have been with my primary care doctor for over 16 years. I credit her with my early-onset Parkinson’s disease being diagnosed accurately and as quickly as it was. She noticed my early tremors before I was willing to admit to myself that they were real. And once she did, she stayed after me to follow up with a movement disorder specialist, a type of neurologist with additional special training in diseases like Parkinson’s.

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I was just 35 when she first asked about my tremor. Looking back, I know now that I had all the classic symptoms of Parkinson’s disease — slowness, rigidity, tremor, and gait issues. The most significant sign that pointed away from Parkinson’s was my age. Typical onset is usually in someone’s 60s, and I was almost half that age. But she felt strongly enough, and we had built a relationship, so she trusted her diagnostic instincts, and I trusted her enough to go and get a diagnosis.

I’ve been seeing my neurologist for 11 years. She didn’t diagnose me; the doctor who did moved away after I had been with him for only four months. At the time, I was lucky enough to get an appointment with this incredible physician and person. During our first visit, she said, “You’re too young, you have too much to do. We’re going to make you feel a lot better.” She has been true to that promise for over a decade.

Counting my blessings

It really does take a team. I’ve had six pretty major surgeries since being diagnosed. A ruptured disk, my two deep brain stimulation (DBS) surgeries (the brain implants and chest implants), two total knee replacements, and surgery for a kidney stone.

It’s a lot, and I’m lucky I had a primary care doctor who kept me healthy overall, so I was physically able to get the surgical interventions I needed. And I’m super lucky that my neurologist worked with me to make sure my surgeons and I knew how to handle my DBS technology during non-Parkinson’s-related surgeries. They have also been supportive throughout each recovery, encouraging physical therapy and addressing my specific needs.

I also count my blessings every day for my neurologist making it possible for me to get DBS. I feel like it has saved my life. Before that surgery, all of my symptoms were at their peak, and looking back, I was miserable. Friends and family were all freaked out by the rough shape I was in, though they mostly kept it to themselves because it was so scary. I would “crash” and fall into bed suddenly from sheer exhaustion multiple times a day as my drugs wore off. And when they kicked in, I was manic.

If I hadn’t gotten that surgery when I did, I’m certain that my life would not be the same. I would probably be in a wheelchair, unable to hold down a job, and definitely not able to type this column. My neurologist was with me through this whole process, and I thank her and the good people at Medtronic every day for this fantastic technology.

As you can see, these remarkable women, with their brilliant minds, generous hearts, and unwavering dedication to science and their patients, have come to mean so much to me. I will miss them forever. Given the level of healthcare where I live, I know I will find a new team. But I will do so with much sadness and gratitude to those who brought me to where I am today. These doctors know who they are, and I will never forget what they’ve done for me.

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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.