Saturday, October 30, 2010

More opportunities and painful realizations

Over the next 2 weeks, Vanderbilt will again offer educational opportunities for health care professionals and patients.  First, is a lunch meeting where the topic will be non-motor problems of Parkinson's Disease (PD) again. The following Monday  will be an evening dinner meeting with a focus on sleep problems.  I think Vandy sent out a notice to every Parkinsonian on their email list, but, as space will be limited, they wanted an RSVP  ASAP.  Greedily--and so I could pass on what I learn--I asked for a spot at both events, even if the Wednesday event meant sending my students to the library so I could cut class and attend the Vandy event. I didn't expect a spot at both, but I got one:).

Yay Vanderbilt. I might even start cheering for your football team. 
These opportunities couldn't have come at a better time, because the past 2 days have seen a rough patch. Honestly, as I sit here licking my wounds, I am convinced my symptoms are getting worse by orders of magnitude.  It must be true that our--at least my--symptoms sundown [get worse at night].  I get tired by late afternoon. Then my legs start this violent flailing. All I can do then is get up and walk. Until last night, I thought it was just my legs, but in bed, I was a 24th Century warrior single-handedly fighting off an army of invading Romulans who were trying to invade my little piece of the  galaxy. Isn't science fiction wonderful? These epic battles will soon be the raw material of my entry into National Novel Writers Month entry, a story where our Parkinson's hero does something utterly  incredible that will bring about peace. Well, that's the plan. Since PD keeps me up all night as it is, I might as well get creative and submit the story of our PD hero into the library of great literature.

I await scheduling at Vanderbilt for speech and swallowing therapy. What can a superhero do if she can't yell?   I do work facial and neck exercises into my weight training. I am learning to yawn loudly and sing Hebrew Nigun [yayaya, babababa] while doing Helena Rubenstein's neck work. But the terrible cough always returns.  I heard from a nurse who works in a nursing home with PD people that the cough is common. It never occurred to me that it was more than Nashville "air."  I am so ready to bring all of these concerns to speech therapists. Not only does losing my voice and coughing cramp my flamboyant style, but my students and my very own dogs take advantage of me when this happens.

Write me and tell me what your experiences are.  Now I head to my yoga mat for a round of floor exercises for vigor, strengthening that's good for our rigid bodies, and mood elevating boost. Jump in with me, PD family

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