About Me

In 2016, I started experiencing changes in the way my body moved and felt. Over the next few months, I would start to lose feeling in my hands. Then came loss of dexterity, especially in my left hand, and a difference in my walk. I started to experience nightly painful leg cramping that would shoot me up out of bed. Tremors came next. First in my left hand, moving up my arm, then in my left leg. My left arm hangs by my side when I walk if I don’t pay attention to swinging it on purpose.

I have visited several specialists from head to toe. My Neurologist tested my blood (several times), ran MRI’s on my head and back (3), and did a spinal tap (they call it a lumbar puncture, maybe to make it sound nicer). She finally narrowed it down to a “Parkinsonism”. After she retired, and a wait of about 6 months to get in, I received an initial diagnosis of Atypical Parkinson’s, or more precise, Cortical-basal Degeneration. Joy. Since then, I have been re-diagnosed with Parkinson’s with Dystonia and I recently underwent Deep Brain Stimulation surgery.

I decided to start this blog, as well as an Instagram page, to chronicle all of the ups and downs of living life with a progressive disease. Hopefully it will help me make sense of things as they happen to me. It will also give my loved ones a day to day update on my health and state of mind (scary). And, just possibly, it might provide someone else out there who either has a chronic illness or cares for someone who does, something to think about. It might even inspire by accident.