I was diagnosed in the spring of 2009 with a terminal, untreatable brain disease that has various names: Pick’s Disease, Fronto-Temporal Dementia (FTD), Fronto-Temporal Lobar Degeneration (FTLD). Typical survival prognosis is 3-5 years after diagnosis. It usually takes five years after onset to get a diagnosis. There are several variants of the syndrome. The decline is inevitable, but erratic, and unpredictable. It just depends on which brain neuron dies today.
This is just the last straw on top of my other diagnoses: Chronic pain syndromes — Reflex Sympathetic Dystrophy (RSD, a.k.a. Complex Regional Pain Syndrome CRPS), spinal nerve pain from both collapsing and bulging discs, fibromyalgia. Celiac (Sprue) disease. Abdominal migraine. Gastroesophageal Reflux Disease (GERD) with hiatal hernia. Epilepsy. Asthma. Meniere’s syndrome. Deep Venous Thrombosis (DVT). Osteopenia. Kidney stones. The RSD and osteopenia are causing all my teeth to disintegrate.
I enjoy music and have played the piano since I was seven. I used to play Beethoven’s sonatas. I like classical and Celtic, and have an eclectic taste. I love to write, when I’m in the groove. I’m currently working on a novel.
I had a medical education and worked in management and medical quality-of-care audits for many years. Professionally, I’m a Registered Health Information Administrator (RHIA).
She’s on her journey back to the sea. I’ll follow her as best I can, down to the shore and then along the sea roads. At last I’ll have to give her back her skin. Then her trail will go cold and I will lose her scent. She will frolic with her sistern in the waves, and I will sit on the shore and listen for her laughter in the roar of the surf.