Archive for the ‘Living with Parkinson’s’ Category

New England Parkinson’s Ride, Sept. 11

Monday, September 6th, 2010

If you happen to be in the Old Orchard Beach, Maine, area this Saturday, September 11, look for us on the triple during the New England PD Ride.

Come and cheer us on! There are 195 riders this year! That’s nearly double last year. Still, we’re easy to spot as the only whole family on one bike. For some training pics and stories, go to http://www.limyoga.com/parkinsons_ride.html

The rides begin at Loranger Middle School, 148 Saco Ave., Old Orchard Beach. Team Mama will be riding Fred on the 50-miler, which heads out at 9:30 am.  The ride ends at The Pier, at 1 West Grand Ave, Old Orchard Beach. I expect we’ll roll in between 1:30 – 2:30.

Here’s hoping for good weather! But even if the weather isn’t postcard-perfect:

Rain or shine, Fred rolls
Fifty miles uphill and down
Rain or shine: a cure.

Mirapex, Here a Vex

Saturday, August 21st, 2010

At my last checkup with my neurologist, he ran through the standard office visit litany of tests. I touched my nose, I puffed my cheeks, I walked to the end of the hall and turned and walked back.

When he turned his wrists and said, “Show me how you change a light bulb,” I smiled. My arms at my sides, I replied, “I ask my husband to do that.”

Though he didn’t laugh out loud (I did notice, however, perhaps a slight effort to remain his serious self), I still like him. I believe it’s important to have a good relationship with my doctors, where I can trust that they are not only listening, but truly hearing what I’m saying. No joke.

So during the appointment, when I mentioned that sleep (or lack thereof) ranked highest on my list of disruptive symptoms, he nodded. He asked a few questions. He took notes. After several more minutes of thought, he suggested I change from the three-a-day doses of Mirapex to the newly available once-daily, extended-release version. He gave me a coupon with the prescription to try it for thirty days.

I was pleasantly surprised and highly irritated.

The pleasant surprise: The extended release version leaves me with a more even sense of its effects, keeping rigidity at bay, reducing the side effects (particularly the stand-up-too-fast lightheaded sensation), and easing the long night’s journey into day. It gives me more ability to turn in bed, which allows for an occasional unfamiliar comfortable spell.

The irritation: My insurance company does not cover this medication. From what I can tell, their policy dictates that if the active ingredient(s) is the same in a new drug as in a less expensive (i.e., generic) brand, then they’ll cover only the latter.

Chemistry never ranked up there as a favorite subject of mine, but apparently the active ingredient in this once-daily pill is the same. The inclusion of the extended release aspect holds the key to making my day (and night) less challenging,  the ingredient that keeps me more active.

My doctor did the right thing. He prescribed a treatment he felt would be of benefit to his patient. Now it’s time for the insurance company to change the old, burnt-out  light bulb of their policy and step up their benefits.

Less Is More

Sunday, August 1st, 2010

All it took was one email in my inbox to make me smile. Oh, there were plenty of other messages there, from spam and scams to Facebook notices and must-see YouTube links. But this one I read and read again. Like discovering a lone poppy in bloom among the mounds of crab grass, I paused and savored what I saw.

Here it is, from guest blogger Debbie Flamini, who shares her insights into the essence of living your yoga while living with PD. Enjoy.

FINDING BALANCE

by Debbie Flamini

Less is more, is more or less

What my body needs, to not feel stress

No body stress leads to Cinderella Days

How do I get there?  Let’s count the ways!

Consider less is more in everything you do

From yard work to exercise, even laundry too

Stop competing with the body you owned before

Your current one still works, right down to the core

Your yoga practice is beautiful, body and soul

And isn’t self-acceptance a very admirable goal?

So what has PD given me, that’s positive and good?

A yoga practice more meaningful, one that’s understood.

Travels with Friends

Monday, July 26th, 2010

Here’s a travel log, complete with pics, from my recent bicycle trip to Switzerland.

http://www.limyoga.com/swiss_ride/

What’s not in the story is an expression of how grateful I am, not only to my captain and fellow stoker, but to my friends as well. You were there on the ride with me, particularly when the going got tough.

One place a friend showed up was after I blamed the wacky European cobblestone sidewalks for causing me to trip (though it was less than graceful, I did remain upright!).  I thought of Al. He’d have enjoyed the humor, as I noticed when I glanced down, that the path I was walking was paved. Hmmm, seems the PD had more to do with my vertical challenge than what was underfoot. Stumbles strikes again.

A few nights, when PD’s insomnia kept me from sleep, my husband stayed awake to keep me company. We shared stories of childhood where Julie and Suzanne featured prominently in the musings,even long after my husband dozed off.

And when the meds waned, I’d rest a while with my sketchbook, considering how Shelley might draw a scene. I actually rather enjoyed sitting with her until the rigidity eased.

I’ll think back on the Swiss Family Fred adventure and smile at the music of the cowbells and the dance that my taste buds did at every bakery. I’ll recall with pride the power my legs, PD or not,  contributed to the climbs, the 250 miles.  I’ll also remember that when the challenges of travel showed up, as they will with or without a chronic disease, I got by with a little help from my friends.

The Art of Yoga

Saturday, May 1st, 2010

If, a year ago, someone told me that I’d be spending my Wednesday mornings sketching nudes, I’d have pleaded to mow the lawn instead. Maybe take out the trash.

I’ve never been a student behind an easel, never even stood at an easel for that matter. The mention of a charcoal pencil sent my mind into a chatter fest of excuses not to draw or, heavens, paint. I remember I trembled. And worried. How could I possibly produce something that wouldn’t be clumsy and inept?

When my first symptoms of PD grew too strong to hide, I became that frightened student again, wishing for another diagnosis the way I’d preferred to have done chores. Again, I trembled and felt clumsy and inept.

Four years later, something magical has happened. I picked up a paintbrush and it felt good. I now grin the entire time at an art store replenishing yellow ochre and stocking up on sketchpads.

Now, I stand behind the easel in class and I’m absorbed in what my eyes see and translate to my fingers. It fascinates me when I step back and discover what has emerged on the page.

More than the product – either sketch or painting – I am entirely present in each moment of the process. Fear doesn’t exist. Inadequacy is gone. For those two hours each week, I am not a person with PD. I am not tall or short or blonde or nearsighted. I’m simply there, in that room, bearing witness to what I see.

It’s no surprise that I’m no longer concerned about what might appear on the paper or what I might look like to passersby when my symptoms show, when my meds are off or a tremor sneaks into my thumb.

Art class has taught me about life. Reminds me of yoga.

April

Sunday, March 28th, 2010

April is Parkinson’s Disease Awareness Month.

Any of us with Parkinson’s are already well aware of the disease. That must mean that April is our stretch of thirty days to publicly whine and curse and . . .

Oh, wait. No. I’m thinking that this month might be better spent finding ways to:

- share treatment and support information with those who are newly diagnosed.
- focus on exercise, nutrition and well-being for ourselves and our families.
- educate others about the disease to help dissuade misconceptions and fears.
- learn about the latest research: knowledge is power.
- consider taking part in a clinical trial.
- maintain a sense of humor.
- keep practicing your yoga.
- stay connected to one another.

An occasional whine is okay, too.

Namaste.

Post to Post

Monday, March 15th, 2010

I’m a Facebook junkie. I post. I read recent posts. I send messages, upload photos, visit walls. I like how I can keep up-to-date with my nieces or college friends, logging in at any time of day, even at the insomnia hour between 3:00 and 4:00 am.

Something yogic exists in the in-the-moment aspect of reading and writing FB posts. I feel I’ve been invited to share where someone goes, what his or her current status is, what’s going on.

A letter from my niece, Kate,  however, is shedding light on my view. A letter, yes. The kind written by hand with a pen on sheets of paper, folded into an envelope that carries a stamp and gets delivered by actual post to a real mailbox with a hinged metal door.

The difference between posts and the letter I received by post, besides the tactile feel of holding the words Kate wrote, derives  from the words themselves. The sentences express more than a quick rehash of what my niece has been up to.  I could tell she’d taken her time, thought about what she wanted to say, mulled it over, and shared with me not so much the week’s high and low points but how she felt about them. The yogic quality of this letter taps in to her moments but also to an awareness and a witnessing of her life in those moments.

My new yogic view of reading my FB home page is that it’s akin to holding a pose, both call on  immediate and focused attention. Reading Kate’s letter, however,  compares more to yogic breathing. Both bring a depth of mindfulness to the immediate moment.

Oh, I’ll still log in to my FB page daily, just as I work on various poses each day.  I will also pause to consider,  breathe in life’s energy, allow thoughts to flow on to paper.  I will write more letters.

When Life Hands You Lemons . . .

Monday, January 25th, 2010

. . . don’t simply make lemonade.

Bake.

Baking is about creation. It’s about changing a list from flour to nuts into a dessert or breakfast treat. Whether it’s melding butter with chocolate or combining raspberries with ground almonds, the result enhances the finest flavors of each ingredient.

Yoga. like baking, is about transformation. This shift can happen in my body when I’m molding myself into into hero pose, or in my mind when I’m gazing at the flicker of a candle. The rigidity in my Parkinson’s muscles lets go of some tension, and the chatter – from fears of future symptoms to frustration with the current ones – empties from my thoughts.  This change, this shift, maintains the essence of who I am – my list of ingredients – drawing out what’s most flavorful.

Sometimes, a cool glass of lemonade can be refreshing.  But, making it is less a creation to me than a means of masking the taste with sugar and diluting it with water. I want to bring out the natural tang of the fruit. I want to create a lemon meringue pie, lemon squares, lemon poppyseed cake, lemon drop cookies.

To transform the lemons in your life-with-movement-disorders basket into a delight, bake something. And, of course, practice yoga.