What Can I Do?

                      Whenever you are confronted with an                                      opponent, conquer him with love.   – Gandhi


he words of Gandhi, Einstein, John Lennon profess love in the face of evil, hate, injustice. They are beautiful words, inspiring words. But I can’t do it. Maybe I need more yoga. Love – as in tenderness, fondness, caring, respect – connote community, warmth. The words coming out of Washington do not.

Alternate facts. Brrr, are we on the set of 1984? Cha-ching. Cold cash transfers from people and planet programs into a network of pockets of a few old boys. Even the pink blanket of hope spread by the Women’s March cannot ward off the chill of the indifferent, soulless support of last week’s icy executive orders. The climate has already changed – it’s freezing out there.

Freezing in Parkinson’s lingo defines what happens when a person becomes suddenly immobile. Walking along when, with no rational explanation, both feet get stuck. Not in a glued or super-magnet way. Stronger counter-muscles would win out in that case.

Love is the answer.  – John Lennon

Parkinson’s is slyer, more self-serving. The person knows what needs to happen but the path that carries that message from the brain has been swept over and no longer exists, So, powering through does no good. It can actually make the situation uglier – all that energy doubles back with more, even  violent, pressure on the soles.

To get out of a ‘freeze’ requires attention.  First, it takes a moment or two for the person to sense that their weight is in both feet. Another moment’s focus and a new path sends the message to shift that weight to one foot so the other can step out into the warmth. Sounds simple, but when these givens are no longer automatic, the maneuver needs patience, understanding.  Love.

We are here for the sake of each other.   – Einstein

There’s a saying in the Parkinson’s world: Until there’s a cure, there’s community. Family and friends. This degenerative disease leaves them cold, too. As does the degenerative disease spreading through our capitol.

       I’m writing you a love letter.  – Bonnie Raitt

When was the last time I made sure those in my community were warm in this chilly climate of hate? The words of Bonnie Raitt are more in line with what I can do: love who I love. Now and throughout the upcoming months, year, four years, I’m literally sending out love. And warmth.

So can you:

Send love letters.
Remind your sister, your nana, your friend all the little things you love about them.  No emails or texts.
Love letters need to be hand-written, in drafts that get crinkled up and tossed before committing pen to paper.

Think opposite of Tweet.


Think Pink! Show the US Postal Service the love: copy and print this return address label                                                                                                                                                                                                                                                                                                                                            

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Yoga in Your Livingroom

When yoga class comes to you:

Free. Weekly. Online:

Click to read more:
Yoga online.

Click here to register for class.

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I know where I recognized that dread, that weight, that sour taste that defined this morning after the election. I woke to it the morning after my diagnosis. Egads.

I grieved — occasionally still do — and I got out from under the weight. Time to do it again with yoga and:

My EGADS approach to Parkinson’s  ^(11/9/16) Life

Exercise (yoga is good) & eat well (that includes pie)

Give a compliment (once in a while, I give one to myself)

Aaah moments (find three each day; in difficulty, refer to above: pie)

Do something for someone else

Step outside (breathe)

And remember – quoting my friend, Cindy – until there is a cure, there is community.tsh


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Forging Awareness

eye3Ever notice a baby when another baby enters the room? There’s an instant look of recognition, a ‘Hey, I know you` connection. For some, the grin is hard to contain, others stare for a while first. Either way, they’re drawn to each other.

This happens to me when I meet someone living with Parkinson’s, whether a new student in my yoga class, a chance encounter at a café or amidst many at a conference. Like babies, regardless of how caring and understanding our caretakers are, in that instant, we know that the only other one in the room who gets babyhood (or PDhood) is the baby.

The camaraderie of the Parkinson’s community has provided me with resources from book reviews to diet tips, made me laugh, introduced me to people whose paths I’d not have crossed otherwise, given me cause to reach out in support when a bad day got someone down and allowed me to reach out for support when a bad day got me down. It is a generous group, willing to share their stories and especially their hope. As one of my friends — thanks, yes thanks to PD for that friendship — puts it: Until there’s a cure, there’s community.

Forging Resilience is a new resource for sharing those very stories, especially now during Parkinson’s Awareness month. It’s worth a visit because, baby, we need each other  (www.forgingresilience.org),




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Quit the Quick Quips

parisI live with a teenager. When he speaks, a one-word grunt is typically accompanied by a shrug. On the rare occasion that a full sentence streams out aloud, it’s riddled with middle-school speak. A combination of texting abbreviations and lingo known only to eighth graders streams out with a tone that emits coolness.

The word-nerd in me isn’t satisfied with the coolness factor of the delivery and tries but often cannot parse the meaning.

Since there is no Teenage Awareness Month and April is Parkinson’s Awareness Month, I offer the meaning behind a few PD catch phrases.

“I have Parkinson’s, but it doesn’t have me.”
“Parkinson’s: Fight back.”
“Parkinson’s is a word, not a sentence.”

Each seems an upbeat summary of what it takes to live well while living with the disease. I’ve used them. But on closer inspection, they’re much like the language of my son with more meaning in the delivery than the words themselves. I’ve learned that to understand what my teen is actually saying, I need to ask questions and listen to what’s behind the spiky hair and Hey, chill ‘tude.

I’m checking my feel-good ‘tude at the door. To expand on these PD catch phrases and offer a glimpse into my world with PD, I step from behind the meds that allow me some functioning in the world I call ‘normal.’

“I have Parkinson’s, but it doesn’t have me.”
From where I stand – early in my second decade with this degenerative disorder – it most definitely has me. It has a hold on every aspect of my day.

I’ve used this phrase to clear the awkwardness that intrudes the air when a stranger stares at my drunken gait, a relative offers advice or I just tripped over my own feet that didn’t move when my body did.

PD is awkward and intrusive. It determines what I eat. It wakes me in a torturous manner, never allowing for more than two hours at a time. It joins me at the grocery store, to restaurants, on a walk with the dog. I consult it before making a schedule and again when having to rework the schedule because meds don’t kick in. I’ve been late to appointments where I was there in the parking lot but couldn’t get out of the car.

In this world of Parkinson’s in which I live, it has me. To say it doesn’t is to diminish the times I’ve crawled to the bathroom as ridiculous and undignified. It has me. It has me working around its controls. Most people walk to the bathroom. Me too. Except for when I have to crawl there.

“Parkinson’s: Fight back.”
It feels good to hit something once in a while. Like a boxing bag. And this statement may feel good for someone recently diagnosed who is desperate for a rosier glimpse into their future.

But actual fighting implies body contact with the opponent, a state of mind that plots the downfall of the enemy, election year campaigns.

I’d be pleased if Parkinson’s retreated, vaporized or called out “Uncle.” However, I don’t fight Parkinson’s. First, there’s the fact that, since it still has no cure, I’m pretty certain which of us would win. But, also, with each day a gift and a limited length, I choose to put my efforts into joyful moments not into punches, negative thoughts or retaliations. Isn’t there enough anger and violence around? (Did I mention election year campaigns?)

Exercise helps. But that’s not fighting. That’s riding a bike, hiking, running. It feels good to feel strong. When I freeze mid-way between the dishwasher and the sink, the kitchen doesn’t become a battlefield. The kitchen remains the same but for that woman standing still in the middle of it. The best way for me to continue on to the refrigerator is to use the strength in my arms to brace on the counter while urging my legs to step back in.

Diet and meds help, too. A service dog and understanding family and a sense of humor also aid in powering through. I’m not fighting, I’m determined to include a bike ride or leftover pie from the fridge into my day.

“Parkinson’s is a word, not a sentence.”
Awareness is knowledge, understanding, empathy. When I sit with my teen and ask about his day, share aspects of mine, we talk. It is only then that I come to understand the meaning behind his monosyllabic speak.

To understand Parkinson’s is to see the people behind the meds. To get a glimpse of why funding and participating in research trials are important (studies need people with and without PD to take part), check out the listings at the PDF and the Fox Foundation. To learn about beneficial classes and programs, talk to someone at the APDA and Northwest Parkinson Foundation.

No, Parkinson’s is not a sentence. It is a conversation.

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thI click the Like icon routinely on friend’s Facebook posts or their comments on mine. It’s a rare moment, however, when my internal Like button gets pressed and that immediate, undeniably warm sensation whooshes in and says, Yes. Good. Life is better because that person is here living it, too.

In yoga, our awareness opens us, teaches us to step back from our egos and witness the Like in all. Well, I’m not there, yet. Maybe after the election.

In the meantime, there are people such as Meg Bernard. I haven’t met her, have never spoken with her, don’t know where she lives. Still, she has a message and such likeability worth sharing. Almost makes me want to staple her name to a stick and stand on the street corner urging you to read Meg’s blog (click to read her blog) and cast your ballot for more people like her.

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What To Do, What To Do

                                          TO DO:

logo_√__ Register for the World Parkinson Coalition’s (WPC) 2016 Congress in Portland, Oregon.

_√__ Get Sir Thomas a spiffy new vest for the occasion.

____ Blog about the Parky for the WPC.

Check. Check. Hmmmm. When I first heard about Parky, my really? radar triggparky4ered.

But, I’m a blogger for the WPC, I need to hone in on the really! qualities of this 10-inch, floppy plush toy, not the fact that it looks like the dog’s favorite chewie.

A stuffed raccoon (really?), Parky is the WPC’s mascot for their upcoming Congress, the Parkinson’s conference of conferences. The organizers invite everyone affected by Parkinson’s disease (PD) from everywhere around the world to a summit of shared stories, current findings, breaking news, latest treatments, song and dance and so much more.

More than 3,500 researchers, physicians, nurses, therapists, movement specialists, the newly diagnosed, people who have lived with the disease for many years, caregivers, family ­­­­and friends convened in Montreal in 2013. The 2016 gathering is in September in Portland, Oregon. Attendees can choose from scores of scientific presentations, hands-on workshops, sessions on alternative approaches, group discussions, social gatherings.

So, really? Why a raccoon to represent all things PD? Tulips, the international symbol of the hope for a cure, seem much more elegant.

Then again, at the end of a bad day with the challenges of living with PD, even the most graceful flower flops and gets dark rings around its eyes.

A children’s story about a raccoon names the rings on its tail Cheerfulness, Faith and Persistence. Well, it certainly takes all three when PD is around.

I also read that raccoons are playful, alert and intelligent. That works.

They’re also considered to be incredible survivors, able to adapt to changing environments. Really.

Oh, parky2and they’re nocturnal.

That summarizes most people I know living with PD: fun, smart, rolling with it and up most of the night.

_√_ Blog about the Parky for the WPC. Check.  On closer look, Parky is fuzzy and squishy-soft. Anyone can buy one. They all appear to be the same, but they’re not. Each Parky experiences something different, just like each person with Parkinson’s. Parky goes on hikes, to the symphony, to conferences.

My Parky is a yoga fan. Oh, and has a service dog.  Really!

parky1  See more here about Parky’s story.

Click here for more about the 2016 WPC Congress in Portland.

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AAA Benefits

eye3I routinely call on AAA to help ensure that my yoga class will be moving.

In fact, in a new class this week, AAA led us from the mat to the art box filled with construction paper and glue sticks.

There were no tow trucks or spark plugs involved. This AAA stands for Awareness, Ahimsa and Allowing. In other words, in each class, we move and we watch. We notice, we’re kind, and we let go, We see it in each other’s eyes.

For example, instead of perfecting triangle pose, we step back and witness. How does a wide-legged stance feel? Notice if bracing one foot’s outer edge against a wall makes a difference. Becoming familiar with our various body-part shapes and what shape they’re in defines yoga practice.

To see the sun is to praise
your own eyes.  Rumi

We don’t stop to identify, judge or bemoan a not-so-wide legged stance or crooked downward dog. We take note and take care. The Queen Mother of the yamas, or yogic ways of being, is all about compassion – including with ourselves.


Let crooked dogs lie. They can tell us something about asymmetry and the beauty of imperfection. eye5

AAA and Namaste
We end class by looking into each other’s eyes. When AAA is on the scene,  there is a spark. We really look – notice, witness, observe –  and see the light of compassion. Reach for some construction paper and a glue stick; the eyes have it.

If only we could pull out our brain and use only our eyes.  Picasso

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What Would You Say?

BW5What would you say if I compared the similarities of boxing with yoga? No, not Boga or Yoking, I mean all-out punching a heavyweight bag, whacking hand-held pads, striking a speed bag

Both take concentration, a kind of focus that takes us out of our busy minds of to-do-lists and what-ifs and connecting with where we are and how we move, whether it’s in a yoga studio or a boxing gym.

What would you say if evidence showed that boxing and yoga — exercise itself — helps relieve the symptoms of Parkinson’s disease? No classes nearby? No one to play tennis with, or run or box or practice yoga together?

What would you say if a new program helped keep exercise fun, social and feeling good?

Check it out:
Power Through Project




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Opting for Art

In combination with moving to the other coast, it made sense to purge, downsize, cleanse as well. Who needs all this space, all this stuff?


Marsh at Sunset painting

All that’s involved with simplifying is actually quite complicated. The closer the moving date gets, the more I’m relying on yoga to soften the edges of all there is to do. The saying, “We’re human beings, not human doings” doesn’t shorten the packing lists or clean the house for showings.

Then again, nothing I “do” will make the perfect couple step forward, people I’ll feel good about handing my house to, folks I can trust will continue to feed the birds. Nothing I “do” will make my meds work better so I can “do” more. In areas where I have no control, “doing” more isn’t going to grant me control.

Yoga practice brings me back to an awareness that I can control how I respond. I can roll with it, let it be. I can also shift my attention to where I do have control. Following my yoga practice, I can opt for art and create something.


Part of the mural I painted when I should’ve been packing.

Read more in my guest blog post Sing Out at  ECare Diary.


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