living with parkinsons

It seems odd to say I had the pleasure of attending my first PD conference since there isn’t much about PD that’s pleasing. Sure, the peppermints and chocolate kisses at the exhibitor’s booths were a treat, but that hardly made up for the lemons life has doled out.

Despite the ridiculous number of holiday cookies I’ve devoured (frosted cutouts and snowballs with chocolate kisses hidden inside among the best), I’ve escaped the “Weber Hips.” This unfortunate posterior flab plagues most of the other women on my mother’s side of the family. I can, however, lay claim to inheriting the “Weber Nose.” Distinct not only in size, it can detect the lilacs in a neighbor’s yard two doors down. With the windows closed. This sometimes-blessing has a flip side in that it also can identify a full diaper from as far away. But I’m losing it. This baking season, the aromas have lost their strength. I barely noticed the hint of cinnamon wafting from the oven or the fresh pine of the greens on the mantel. I’ve even started to hand the milk jug to my husband and ask, “Does this smell okay?” A Weber would never have to […]

If I’m to listen to my body, as any seasoned yogi would, which part do I heed? Various shrieks from my hamstring tendon shout, “Injury here, don’t move.” At the same time, the rest of my anatomy hollers out over the pain. “Be strong,” it says. “With PD, if you stop moving, you might stop moving.” I feel as though I’m stuck between two radio frequencies, drifting between them depending on where I’m standing in the room. As the spasms in the back of that leg ease up a bit, I’m tuned in to a classical station, and can head for the gym without too much clamor. When the heavy metal band takes over, I’m back to the freezer for another ice pack, overwhelmed by the throbbing beat. You overdid it, I’d say, all but wagging a finger at myself for my mishap. Until the next time the soft violins […]

When my publisher let me know that companies in France and Italy are interested in translations of Yoga for Movement Disorders, I had mixed reactions. I smiled and thought, Magnifique! Bellisimo! At the same time, I grimaced knowing that differences in culture and language prove no barrier for Parkinson’s. It need not pass through customs despite what it brings into the country. If there is any positive that spans the continent, any gift associated with this disease that takes so much, is in the proverbial glass. Whether it contains champagne or Chianti, it is certainly not half full. But, neither is it empty. In it are the warm personalities of people whom I’ve met due to our commonality. This haiku is for you. Pebbles, sea glass, shells, Tumbling, twirling together Riding the same wave

During spin class the other day, the instructor grinned as she relayed that regular aerobic exercise can increase our metabolisms by thirty percent. Spin two or three times a week, she said, and we’ll burn more calories even while we’re asleep. NO! I already wake up to a growling stomach at 3:00 am, I thought. The music pulsed and I kept rhythm with my feet, circling at a quick pace. My mind, however, was caught up in the whether I’d be able to keep up that ridiculous cadence without passing out from hunger. Some nights, I go to bed with a little twinge telling me that dinner was too long ago. Besides, once I’ve brushed my teeth; that’s it. I’m not going deal with flossing a second time in one night. As the beat slowed – the signal for an uphill – I stood in the pedals. The teacher was […]

The entrance to the yoga studio is around the back. A gate leads from a narrow, dimly lit tarred walkway to a bright sculpted garden by the door. Spiky iris, feathery poppy, and the red stalks that will be peonies sprout through the soil, lovingly tended. It’s hard not to smile on my way in to class. I pass the plot of healthy spring plants on my way back down that path. Something in the shadows catches my eye. Springing forth not from loam but from pavement, surrounded by gray, is a lone flower. It’s determination makes me smile all the way into my heart, where a haiku forms. A blue hyacinth Pokes through an asphalt alley Reaching toward the light On my next visit to the studio, I won’t hurry toward the lush, sunny garden in back any more. I ease past what is a reminder that when I […]

There are plenty of moments with this disease that leave me cold – the ‘off’ times, the exhaustion that can come unannounced, deciding on a menu item based on its protein content and/or whether I’ll need to use a knife to eat it. And then there are moments filled with warmth. The sharing and caring that took place at the Spirited Movement retreat held just such moments. Thank you for your stories, from mountain peaks to a love of the sea. I heard such heart behind each, such hope. On days with few breaks in the rain, when I can feel the weight of the overcast sky in my body and my spirit, I can still reach up in my morning yoga routine. Beyond the clouds is that heart and hope, that warmth that reminds me that the sun is always there. Is it any surprise that it shone so […]

I had the honor of guest blogging. Check it out at www.lifewithdystonia.com/

I’ve signed up – correction: We’ve signed up. Captain Papa, me, and a turbo-charged seven-year-old as the rear stoker are riding in the New England Parkinson’s Ride in Old Orchard Beach in September. “Fred” is the name my son dubbed the triple – our three-seater bicycle that lets the family travel together. And together we will be for 50 miles, raising awareness and raising funds for the Michael J Fox Foundation, where 100% of the proceeds go to finding treatments and a cure. I love cycling. I love that studies have shown that tandem riding benefits people with PD. I love Maine in September. I love that I can do something to contribute to the MJFox Foundation. But most of all, I love that Team Mama is doing this together as a family, not for me but with me. http://www.limyoga.com/parkinsons_ride.html for more info or to make a pledge.

I’ve been running. Not running around or running errands, simply running. The loops are short — a mile — and through the woods. This has double advantage of softer ground and no witnesses. I won’t be trying out for a marathon anytime soon. But that’s okay. I’m not training for a race, unless the battle to stay ahead of this disease counts. I don’t need to know if I’m bettering my time with each jaunt. What’s so wonderfully surprising – besides the fact that I can actually, physically, run – is how centering it is. It’s as though I’m moving through an unnamed asana, the Deer Flow or the Winged Warrior. Some primordial sense kicks in as I’m making my way along paths of old leaves and pine needles. I feel graceful and strong while I’m out there – hardly like a gimp at all. That runner’s high is likely […]