Would you like to dance? A charismatic devil in a sharp suit, all smooth moves and leaking chemistry is looking into your eyes as he inquires, yet takes no interest in your answer. He doesn't care what you want. You have every reason to thrash and resist, but your body begins making it's own decisions. Thanks to an extreme dopamine deficiency and a horrifying neurologic storm, you are now dancing with that devil. We'll cover the neurologic storm part later. For now, have a seat and welcome to the rest of your life. Pain will now be your dance partner. Any partner or friend attending the dance will also be forced to patronize this uninvited third wheel, so you may want to get to know it a bit.
Since this particular neurologic condition is too often mistaken for an "old man disease", we shall refer to it as The Dance, or St. Vitus' Dance. And let's not neglect to mention that "old men" are in fact just like you and I, and we'll all be old if we should be so lucky. I'd like to reBRAND Parkinson's though, into something much more current, especially the Early Onset crowd. You may already know that a Parkie, as we affectionately refer to one another (or in Britain, just exchange the ie for a y), can be a 22 year old chemist, a 30 year old musician, a lover, a fighter, a teenager, a Mother or your best friend. Parkie is you and parkie is me. I have never met someone who is not suffering, and orient to the world in this way. Rather than judging, I simply consider the suffering of others.
What am "I" and why do you care?
Like everyone else living semi-comfortably in survival mode, you probably have a lot on your plate with things like earning a living and taking care of your own family... maybe you have chronic pain or know someone affected by disease. I will not be wasting your precious time in this space, but there are 25 posts just gunning to be published. Topics ranging from the epic World Parkinson's Congress that just concluded in Portland, to the secret side effects of dopamine agonists, or perhaps why dystonia can be a nightmare. There will be science, but only if you click the links offered. I am in no position to rewrite the vast amount of research, but can point you to the most interesting of the lot. We can also discuss loss and grief in good humor here and I will not be the only writer featured. I met some INCREDIBLE minds at the WPC, and they will be dropping by this space soon for your reading pleasure.
This collaboration is going to be a wild ride, dear friends. I am not beginning this new blogspot for money or sponsorship and currently answer to no one- especially not this uninvited guest. I am here to let it rip because I am tired of feeling gagged by what others deem appropriate or politically correct, and every Parkie will tell you they are done with the stigma of this individualized condition. The intention of this blog will be to share info, fabulous music playlists and opportunities to dance. Ask St. Vitus what happens when people are misunderstood. Someone once told me to "use my words" instead of howling at the moon. Both can be powerful agents of change, or lead to catharsis, lessen isolation... or at least you'll be entertained.
*"The convulsions characteristic of the condition are believed to be caused by an autoimmune reaction in neurons in the basal ganglia, a system of subcortical brain structures involved in the control of movement. Accordingly, the streptococci induce antibodies that cross react with basal ganglia antigens. The involuntary movements sometimes resemble a dance; St. Vitus, a fourth century Sicilian martyr, was the patron saint of dancers, hence the name of the condition. St. Vitus’s Dance is also known as Sydenham’s chorea, after the 17th century English physician Thomas Sydenham (1624-1689). The word “chorea” is derived from the Greek word khoreia, meaning “dance”. St. Vitus’s Dance is also sometimes referred to as chorea minor, but should not be confused with Huntingdon’s chorea (now renamed Huntington’s Disease, HD) an inherited neurodegenerative disorder. HD is also characterized by involuntary movements, caused by the death of basal ganglia cells in involuntary movements, and is sometimes referred to as chorea major." * http://scienceblogs.com/neurophilosophy/2007/08/13/st-vituss-dance/
DISCLAIMER: Please bear with me as I fumble through technical difficulties between mobile and desktop design. I have no idea how to use this web platform, but I will master it as I practice. The blog could not wait. The WORLD PARKINSON'S CONGRESS was far too inspiring!