The author works with people who have Parkinson’s disease but almost missed signs of the condition when they appeared in her mom.
BY ANISSA MITCHELL
It comes on gradually but, still, I should have seen signs of the disease in my Mom earlier than I did. Maybe I was in denial because of the irony: for years, I've run a Parkinson's disease outreach program, where I provide education and counseling to people with Parkinson's and their families. Maybe it was because my mother doesn't live in the same state and I don't see her every day. Whatever the reason, I should have known better.
Instead, I delayed and avoided using the word "Parkinson's" even when her movements slowed, when her arms didn't swing while she walked, when she lost her sense of smell, and when she said she was constipated and had trouble sleeping. It was until she mentioned that her toe was bothering her and sometimes curling under painfully, that I finally blurted out, "You need to see a neurologist because I think you have Parkinson's."
Even that outburst didn't work. It wasn't until she developed carpal tunnel syndrome that she went to a neurologist. I encouraged her to describe her other symptoms to the doctor, which she did, but to my dismay, he told her he didn't think she had Parkinson's because she had no tremor. Even if she did, he said, it was "just a little Parkinson's." I was stunned. Saying someone has a little Parkinson's disease is like saying someone is a little pregnant. Either you are or you aren't. Sure, there are sub-types and different stages of the disease, but there aren't degrees. Either you have the disease or you don't. And while it's true that a majority of patients experience tremors, about 30 percent never develop one.
I was frustrated I hadn't noticed the symptoms earlier, knowing that by the time a person develops symptoms, such as a tremor or slow movements, he or she has already lost 60 to 80 percent of their brain cells that create dopamine, a neurotransmitter that affects movement and mood. Brain degeneration likely began years ago, so my Mom had more than "just a little Parkinson's" but, in her mind, she was cleared of the diagnosis.
Soon after, she came for a visit and accompanied me to a meeting with a Parkinson's disease specialist for whom I was scheduled to do a presentation. After observing her for a short time, the specialist explained what he saw and encouraged my mother to get a second opinion. When she did and the diagnosis was confirmed, I was relieved but saddened, too. I know too much about the disease and what it will mean for her, and of course, for me as her daughter and care partner.
I spend a great deal of my professional time going out into my community to educate people about the disease and being an active participant in managing it. How is it that I, who am informed, did not see the symptoms sooner, or did not make sure she went to a specialist? Like many family members and care partners, I experience the same frustration, guilt, and challenges that others face regardless of my professional position. I may be a social worker for people with Parkinson's disease by day, but I am still a daughter and sometimes these two roles collide.
Fortunately, my mom has found a good movement disorder specialist in her state and is getting proper treatment. My job now is to encourage her to dig in and fight this disease. While I struggle at times balancing being a social worker and a daughter, I remind myself to accept the things I can't change, advocate to change the things I can, and keep love at the forefront.
Anissa Mitchell is a licensed clinical social worker for people with Parkinson's disease and their care partners at the Florida Hospital Parkinson Outreach Program in Orlando, FL. She lives in Longwood, FL, with her husband, three children, and three dachshunds. She enjoys running, biking, swimming, paddle boarding, and practicing yoga, and loves to read.