Tag Archives: Tardive Dyskinesia

One-Stop Shopping

12980877_sLast week I experienced health care at its finest in my own peculiar version of one-stop shopping, heading to the hospital for a day of consultations flowing from Psychiatrist to Fellow to Attending Neurologist to Physical Therapist. Now that’s what I call patient-centered care, yours truly the star of the show! With Movement Disorder, one’s neurologist is often the tip of a medical ice-burg floating down a river teeming with doctors and therapists. Why shouldn’t treatment resemble a “power trip” to the mall to score a broad swath of retailers?

Pushing our “main squeeze” to the side, chronic illness ushers in a host of ancillary issues shaping quality of life. We confront side effects from our meds, the practical repercussions of a body gone wild, a seesaw of energy and fatigue…not to mention those emotional highs and lows. Assembling our go-to team requires us to work as our own Offensive Coordinator, searching out appropriate therapies – hopefully with providers who take our insurance – in an effort to quarterback a game plan aimed at gaining elusive yards as we journey up the field. The big “Hail Mary” may lie outside our control but we gun for those small victories.

Getting to the nitty-gritty of my “medical spree,” what a treat to bask in the rays of a professional crew evincing an understanding of a slew of complicated relationships – Dystonia the hub driving the wheel. They proffered care with concern, proactively addressed side effects rather than prescribing recklessly, and showed due respect for the knowledge I contribute…after all, I qualify as my own expert witness! Meanwhile, I enjoyed a bout of medical room service where the farthest I strayed was a jaunt down the hallway to display my decidedly Dystonic swagger. If only I could coax this symphony of place and time out of follow-up therapy appointments. When health care gets things right, it’s really rather incredible how much “simpler” our lives could be.

A great big thank you to the Bachmann-Strauss Dystonia Center of Excellence at Beth Israel, putting a capital “P” in Patient-Centered Care and addressing our multi-disciplinary needs!

For more information on Dystonia and Parkinson’s Centers of Excellence, check out the following links:
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Meet My Family

Edited 6349133_sWelcome to my movement disorder family. We’re a motley crew of kissing cousins: Parkinson’s (the family favorite), Ataxia, Athetosis, Ballismus, Chorea, Dystonia, Huntington’s, Myoclonus (not a Greek island), Restless Legs, Tardive Dyskinesia, Tourette’s, Tremor…plus honorary member, Functional Movement Disorder. I’ve never met Michael J. Fox but it’s ironic that he starred in a show called “Family Ties,” which describes our relationship to a “t.”

There are two basic sides to our clan – the tortoises and the hares – but with a confluence of jerky motions, twisty movements, strange postures, twitches, shaking, stiffness, and shuffling, even we get confused distinguishing one another. Our overriding common denominators are dysfunction of the nervous system causing a paucity or excess of movement, and unsolved mystery.

Family reunions stand as tumultuous affairs that tip the Richter scale. Pre-printed nametags are de rigueur so no one has to write. After competing to see who’s the last to spill their coffee, we hit the dance floor for a Macarena that looks more like a bunch of campers fending off mosquitoes while stomping out burning embers barefooted. Back to the table for chocolate fondue. We converge on the pot with trembling prongs, trailing globs of liquid all over the tablecloth in decorative swirls. Next year, how about Jell-O for some dessert empathy! Of course, no reunion is complete without our banner song. Before departing, we gather for a telling round of the Hokey Pokey: You put your whole self in, and you shake it all about…

Whether our movements play out in slow mo or lurch along at the speed of light, we run the same race as everyone else, pounding our own unique pace. Take a moment and join the party, perhaps even shake, rattle and roll. We’re rockin’ out the dance floor so come on, baby, let’s do the twist!

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