Tag Archives: Parkinson

Making Lemons Into Lemonade!

I’ve been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”

Turning Lemons Into Lemonade never disappoints. I laud the virtues to be found in identifying positive outcomes for our negative situations without unduly minimizing our struggles. My friends may reassure me that it’s ONLY my hair – which will certainly grow back – but my solace hardly lies in downplaying the significance of our locks. After all, I’m a female with a telling history of life-defining dos. Rather, I find my comfort recognizing the importance of our hair by making a donation. With a few trips to Google, I’d surveyed the landscape and located a nonprofit, Children With Hair Loss, more than happy to claim my mane, chemical highlights and all.

For those about to part with their hair or seeking to lighten their load, check out the following organizations spreading sunshine with their good works:

Children With Hair Loss
Locks of Love
Pantene Beautiful Lengths

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Multi-Tasking

17693121_sNow this is an interesting exercise. Why don’t you give it a shot? Here’s the beginning of my list of challenging “multi-tasks:”

  1. Walking and talking on the phone.
  2. Maintaining my balance going down steps.
  3. Playing Twister. Won’t happen again…last game I tore my meniscus!
  4. Laying inside an MRI machine and holding still.
  5. Articulating individual words while speaking in sentences.
  6. Any exercise that involves my legs and another body part.

What are your fiercest multi-tasks?

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:

April Is All About Parkinson’s

14731123_s editedEvery clan enjoys its special celebrations. In my extended family, April marks Parkinson’s Awareness Month and I’m offering up a treat in honor of the occasion.

During my college days, I was privileged to encounter a remarkable professor who became my mentor and transformed my Brown experience with his brilliant lectures, droll anecdotes and unwavering support for my dedication to his personal and professional passion, Russian History, a major we jointly fashioned. I’ll even confess an unrequited and short-lived “schoolgirl crush.” Charismatic and compelling, Abbott Gleason is someone who secures an impression!

In a bitter twist of irony, several years ago Professor Gleason, long-standing member of my Brown University family, joined my movement disorder family with onset of Parkinson’s. He breathed his journey to life in an evocative article, “Getting Around in Oz,” that served as inspiration for this blog, encouraging me to fling open the gates of my wild Dystonia ride. Abbott Gleason presented a vision of how to educate with humor and wit absent a trace of doctor-speak. In his wry introduction to his personal odyssey with Parkinson’s, you’ll glimpse the measure of this man. Onto the main attraction, truly worthy of a read:  Getting Around in Oz.

I urge you to check out the Parkinson’s sites featured below and in my sidebar. If you find your way to NYC this month, don’t miss the Parkinson’s Unity Walk in Central Park on April 27, 2013, an impressive statement of solidarity by the Parkinson’s community.

As April unfolds, I’m sending a shout out to everyone who battles Parkinson’s and hope you’ll do the same. We need link arms in friendship to extend the spirit of the Unity Walk. No one person, no single medical condition, stands alone. Team Dystonia declares Let’s Beat Parkinson’s! 

Meet Some Parkinson’s Bloggers:

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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