Here are two fascinating articles (bingo! bingo!) about Dr. Maria De Leon, a movement disorder specialist (i.e., a neurologist who specializes in diseases like Parkinson’s) who about ten years ago came down with Parkinson’s herself. What’s fascinating is that neither she nor the other doctors she consulted (including endocrinologists, rheumatologists, neurosurgeons and movement disorder specialists) correctly diagnosed her as having PD. The early diagnoses included dystonia (involuntary muscle contortions) and enlarged uterine fibroids.
Part of the problem was that Dr. De Leon kept presenting what at the time were atypical symptoms of PD, which she and her doctors then misinterpreted. Some of her early symptoms:
- difficulty tapping her fingers together
- crappy handwriting (“crappy” is my word for it – because my own handwriting is like that)
- sudden bladder urgency
- throbbing pain in her left ankle
- pain when someone touched her
- poor vision
- poor balance
Finally, another movement disorder specialist reached the correct diagnosis: Parkinson’s disease.
Here’s a quote from one of the articles, explaining why the correct diagnosis took so long:
Everyone in my field was familiar with the four key motor symptoms of Parkinson’s: tremors at rest, slowness of movement, abnormal gait and stiffness. But only in the latter part of the past decade have other non-motor symptoms (pain, visual disturbances, fatigue, depression, mood disorders, sexual problems and cognitive difficulties) been recognized as early PD.
Dr. De Leon is now doing better. She’s on three drugs: Sinemet and Azilect (both of which I’m on) and Neupro. She’s doing better, but nothing’s perfect:
While I was desperate to get a diagnosis, life isn’t perfect now that I have one. Yes, drugs allow me to walk normally, drive safely and avoid a million trips to the bathroom. And I can hug my 13-year-old daughter—even though she’s at an age when she’s no longer crazy about that in public. But there are still days my body and brain are completely disconnected. My daughter has learned not to rely on my math skills, and my husband arranges an extra pillow between us at night because PD sometimes escalates my dreams into interactive events. I also have to nap or at least rest awhile during the day. I’m like a doll that needs to be wound up all the time to keep going; otherwise, I’ll just stop.
But it’s perfectly a step in the right direction that she still advises Parkinson’s disease patients, and that she’s bringing her story to light in Family Circle and this interview for the Parkinson’s Disease Foundation. Everyone needs to know that Parkinson’s disease can appear as a long list of motor-related problems (tremor, limping, stiff limbs…) but also as a long list of non-motor problems (drooling, fatigue, sudden urge to urinate, constipation, loss of smell…). For a comprehensive list of non-motor symptoms, click here.
Best wishes, Dr. De Leon!
Conclusion quote from the Family Circle article:
“Parkinson’s isn’t a typical disease,” says George Plotkin, PhD, MD, director of the ETMC Movement Disorders Center at the ETMC Neurological Institute. “There is no one face, no one symptom that characterizes those who live with it daily.”
