Looking Up to Wayne & Looking Up Parkinson’s

We lost one of our own this week. Wayne didn’t die from Parkinson’s. But he did soldier through living with Parkinson’s, which, to me, means he died a war hero.

I didn’t know Wayne well, but I did know two aspects about him. One is that he battled it all and then some, having a variety of medical conditions. The other is that he had a sparkle in his look, as though behind the dusty blue of his eyes was an enormous filter that sifted through the muck for those shiny moments of fun and humor. That quality likely got him through the daily skirmishes with PD.

There are ten million of us worldwide (according to the Parkinson’s Disease Foundation) who make up the ground troops in combat with rigidity, dystonia, dizziness, dyskinesia, insomnia, meds that sometimes work and sometimes don’t.

April is Parkinson’s Awareness month. So, in addition to the front lines, we’ve added civilian duties to advocate, educate, demonstrate that we can step through doors in more ways than simply placing one foot in front of the other. Sometimes a cane helps, sometimes a walker, sometimes a giant dog.

The dictionary defines awareness as knowledge or understanding of a situation or subject. It doesn’t say that the knowledge needs to come from those already aware. After a decade with this disease, I have to admit to being tired of explaining it. And that’s less than half the time Wayne lived with the sidelong looks, the questioning faces of those wondering about our stumbles, our slurred sentences.

It’s called Parkinson’s. Look it up. Go to the PDF’s web site. Or the Michael J. Fox web site. Or call the American Parkinson Disease Association.

The next time my meds give out in the middle of the produce aisle, I’ll soldier through the stumbles. But not through the stares.

Before the month is over, I just may blurt out a new awareness approach: “Lady with Parkinson’s coming through. Need a wide path. Not sure where my feet will land. Ooh, look, broccoli is on sale.”

And I’ll think of Wayne and hope he has a good laugh.

 

Flu-like

The flu isn’t particular. It didn’t skip me because of the Parkinson’s. Nope, an equal-opportunity virus, it has me lying on the couch coughing up a lung same as anyone else in its path.

I could blame holiday travel strain. Or not.  The past week in San Francisco presented a mix of utter delights (restaurants at every turn – Burmese, Vietnamese, Mexican, Californian) and unusually warm and sunny walks (across the Golden Gate Bridge and along Castro Street). Admittedly, there were upended schedules and unpredictable circumstances. But what traveler doesn’t face a few obstacles?

The balancing act between being away from home and being on an adventure, I’ve learned, requires  adaptations. To keep the scales tilting toward the joyful, for example, I factor in nap times and often pack my own blanket (my PD gets me tangled up in puffy duvets). Among a litany of modifications, the most helpful has been: Rather than a self-imposed, two-page, must-see itinerary in-hand, I ditch expectations and step out to explore with only Sir Thomas in hand.

He’s my guide. He led me to the Castro Street’s version of Hollywood’s walk of fame (named the Rainbow Honor Walk). I might not have noticed the sidewalk squares had Tommy not steered so  wide of each one. When I realized we were slaloming past shops, I glanced down to see why. He was avoiding those pesky plaques probably because they felt slippery under his paws. With him standing conveniently to the side of each, I could read the inscriptions, tributes to LGBT individuals who warrant equal recognition as their straight contemporaries.

Thomas also led me up the steps of the Mission Dolores Basilica, the oldest mission in California. On a  Christmas morning walk with my stepmother, we’d decided to go inside. Tommy braced for me to steady myself. I noticed that mass was in session. Before I could tell what part of the service we’d entered at, a man told me – he did not ask – to leave. I pointed to Tommy’s vest, whispered that he’s a service dog. He marched toward us, still pointing to the doors, which had not yet closed. The law, I started to say, but was cut off by the man, now escorting me out, that the church is above the law.

The pastor responded with a letter of apology the following day. I thank him for his quick attention and thoughtfulness. (As I do the scores of supportive Facebook friends – what a light in the darkness). Though I’ve returned home and can’t physically stand before him on church ground (I can barely move off the couch at this point), there’s more that’s needed.

The man was unaware of the obstacles I’d faced down that morning just to simply be on those steps at all. But that’s my point. He knew none of the other people’s medical, emotional, financial, dietary, hair-loss, gum-chewing – you-name-it – issues either. None of us do. That’s part of what puts us all on equal ground. The moment the man singled me out marked the moment it wasn’t about me.

He turned away the disabled. We are not to be singled out, not by the flu virus or church staff.  What’s needed so this doesn’t happen again?  More education and training, so that an understanding spreads throughout the diocese – throughout San Francisco and beyond, to anyone’s own hometown church –  that equal means alike.

Try It

11219058_1657804321130903_4674728967425109871_nPeople say and do things in the presence of a service dog that are harmful, even when they often meant no harm. When I post about such encounters, I tend to write them in essay form. If I simply ranted, it would be, to me, like spitting on the page, leaving only a mucous glob for readers to see. Simple narrative seems just that: too simple, especially when the topic at hand isn’t. Essay – which, in French, means to try – gives me the opportunity to rant some but also to explore, maybe educate, and perhaps discover for myself some deeper insight as I write.

The essay fails me right now. Try as I do, no aha moment emerges from what came from a recent dinner conversation. Seated at the dinner table, the three of us talked as we ate crockpot chicken and cornbread. A typical evening. Until my husband and I asked our teenaged son how about the election and what was being discussed in school.

“We’re not allowed to talk about it in class,” he said. “It’s not safe.”

Election results. High school. Shouldn’t that be the perfect civics lesson teaching moment?

Wait. What country is this?

Given the intimidation stories school children are sharing around the country, I commend the staff at my son’s school for safety first. It’s that they had to that is so disturbing. The kids are learning lessons, indeed.

How does this relate to a service dog? The answer is: it doesn’t. Or, it didn’t until I saw Samantha Bee’s call to letter-writing. All those intimidation stories – racist, sexist threats – send them to Paul Ryan. Here’s where to get the address:

http://www.speaker.gov/contact

Still wondering about the dog connection? Well, whenever a threat to access for a service dog and its handler became known to the supporters of the agency that raised and trained the dogs, they’d send letters. To be noticed, they all decided on a particular color of envelope. There was the pink envelope campaign when a school denied a student access, a green envelope mailing to a particular inn.

Would that work? Send your stories in a letter in a colored envelope? What color? What about any color but white? You in? Send your story. It’s worth a try.

Ask Not What My Dog Can Do for You

Remember that old cartoon character with a little animated devil whispering snarky rTommyShopemarks into one ear and a tiny angel on the other side saying kind words?

I am that character every time I grocery shop. The other day, I backed my cart  and turned, Sir T in step beside me, when the young couple stopped and stared.

“Oh, I won’t pet him,” she said, not to me so much as to Thomas, based on the focus of her gaze. The husband locked eyes on him, too, adding, “We love the big dogs.”

Devil: “They love dogs? They hovered over him baring their teeth. That’s totally intimidating in doggie world. Did they not see that his tail is completely tucked? And where’s the love in interrupting his work?”

Angel: “They meant no harm and were simply being friendly.”

I went with the angel and offered a quick smile, which I hoped I passed off as polite. I asked Thomas to walk on and we wheeled around them in time to overhear the “Look, honey, a helper dog,” from Aisle 1.

Devil: “Seriously? You’re pointing at the person who’s different, literally pointing, and then when your kid gets older you’re going to tell him not to point? Keep your private teaching moments a bit less public. And helper? You mean like one of Santa’s elves? No, it’s a bit more complicated than that. If you’re going to teach, teach it right: He’s a service dog.

Angel: “She meant no harm and was simply being friendly.”

I ignored them both and went for my shopping list. I’d gotten only to the second item before a woman leaving the deli strode by, pausing just long enough to say, “Good boy.”

Devil: “Okay. Hold on. Who made you boss of the service dog? The way he conducts himself while working is under my jurisdiction, not yours. How many hours have you spent with him? Oh, wait, none, being that he’s with me 24/7.”

Angel: “She meant no harm and was simply being friendly.”

I let that one go since the woman was already gone. I steered toward produce and leaned on Thomas to steady myself while reaching for a head of lettuce.

Near the avocados, a man stood watching. I pushed forward and he started to move toward me, perhaps to make space so I would have room to turn. Not so. He was timing it so when he passed, he could slap-slap Tommy’s behind without my noticing.

Devil: “Drive-by-petting alert! Dude, did you not notice the service-dog full regalia? Which of the four DO NOT PET patches did you miss? Or do they not apply to you? You’re special? You’re certainly self-centered. That pet was for the dog?  Given the way he lurched, I’d say, um. NO. That pet was for you.”

Angel: “I got nothin’.”

I focused on the next list item: Bread.

A dark-haired woman about my height looked directly at me when she spoke.

“May I ask you a question?”

I set down the bag of bagels and nodded, though still on guard.

Devil: “Will it be the name question? The age question?”

Angel: “She seems friendly.”

“How does someone apply for a service dog?”

I mentioned the ADA, various agencies.

“For my daughter,” she said.

Devil: “Pass.”

Angel: “It’s a gimme.”

I summarized processes and policies, noted a few web sites.

She thanked me for my time. I thanked her for asking.

On our way to the checkout line, a woman stepped toward us.

“Oh,” she cooed, “I so want to pet your dog. Can’t he be off duty for a minute or two?”

Devil: “Let me check. Oh, SORRY, the Parkinson’s doesn’t take breaks.”

Angel: “She means no harm…No, scratch that.  Can’t fix thoughtless.”

I opted for a smile and kept walking.

Devil: “Why the smile?”

Angel: “Because she asked?”

Asking before taking is more civil. But even in asking, they want something from my dog – feel-good pats, pictures, long looks, kisses, paw, attention.

No, my smile was left over from the dark-haired woman’s questions. They were about helping someone else feel better

 

Balance Dogs and U

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Sir Thomas rose from his bed only once in the first forty-eight hours at home after last week’s Parkinson conference.

True, Sir T is an excellent sleeper. But there were more than 4,200 attendees from dozens of countries and connections to Parkinson’s and it felt as though each one of them commented, queried, or captured a photo of us. Some twice.

Tommy’s eyes weren’t the only ones bloodshot at the end of each day. One afternoon, I started a count. I gave up after the twenty-ninth stopper – not including the  “handsome dog” passer-bys, but actual stop to talk/ask/admire/poise cell phone camera encounters.

In the four years we’ve been together, I’ve not been so exhausted. Even the restroom wasn’t safe.  Washing my hands, Tommy doing his such-a-good-boy best to remain in a stand-stay beside me, I watched in the mirror as the crowd gathered. The restroom echo grew louder, spooking Tommy. Such a good boy, he still helped me maneuver to the paper towels, which had become more of a challenge with so many people between us and the dispenser.

I hadn’t anticipated the off-the-charts paparazzi,  particularly at a Parkinson’s conference. By the end of the fourth day, I knew I had much more advocacy work to do when we returned home.

When I discovered a website for a canine studies university that specializes in training dogs and humans about service teams, I was delighted.  Bergin University. Yay, I thought, this may not be as daunting a task as I thought. There’s a whole school dedicated to the cause.

Until I read that they don’t train – or, it seems, believe in – balance dogs.  Not worth it, it says, as they’ll likely move away from the balance-challenged person and cause a fall.

So I sent them a letter:

Hello,

 

I was delighted when I found your website and read about the work you do and the education you provide on so many levels.

 

It was disappointing, however, to learn that you do not train balance mobility dogs, and such a discouraging message that ‘they’ll only end up knocking over their handler.’
I’ve recently celebrated my 4th anniversary with my mobility/balance service dog. Sure, I have tripped over him. With Parkinson’s, I’ve also stumbled over sidewalk cracks and been blown over by wind. I’m not about to walk in the street or go out on calm days only and I’m certainly not trading in my service dog. He provides so much more than a cane (which also can trip up the owner and take down anyone in range).

 

He also keeps me independent and upright, and the more I remain upright and walking, the better.

 

The worst culprit of causing my dog to ‘move away from me’ are passers-by who distract him. Grocery shopping, in a cafe. at the airport, the unwanted attention of outreached hands, calling to the dog, kissing sounds, hovering over him, blocking his path with cell phone pointed at him (despite Do Not Pet patches and vest) come from meaning no harm and not realizing the harm their distractions can cause.

 

Through speaking engagements (such as at the World Parkinson Congress last month), presentations to schools and rotary clubs, a service dog blog
(  http://www.limyoga.com/service-dog-parkinsons/  ) and two books (forthcoming 2017), I advocate for and try to teach about service dog  teams.

 

I can only imagine the numbers of people you could reach and educate as a university! I and my fellow advocates could certainly use the help in spreading the word on how to (or, better yet, how not to) interact with a service dog

team.

 

If it is still your policy not to train balance dogs, would you consider adding to your curriculum, teaching humans about balance dogs?

 

Thank you for your time and consideration.

Sincerely,

 

Renee Le Verrier
renee@limyoga.com
www.limyoga.com

 

I’ll post the reply.

 

The WPC: My Big, Fat PD Wedding

STBlog12cI’m packing up a folder full of schedules and notes on all that I plan to partake in at the World Parkinson Congress (WPC) next week. Sir Thomas’s toenails are trimmed (he knows something’s up) and I located and even used the iron before adding a couple of blouses to the suitcase.  I can’t help but feel as though I’m off to attend a giant wedding.

Like with a modern event where the bride and groom have shared equally in the planning, patients and practitioners of this event have both contributed to the preparations. And, when guests arrive, we aren’t relegated to sit on one side or another. This multi-day gathering encourages intermingling among all those related to Parkinson’s disease (PD), from individuals living with it to researchers seeking to strike it from our lives. There are speeches, toasts, even dancing, and the fully-stocked program is the buffet table of tasty tidbits to entire entrees, crafted to guarantee that all guests find something to suit their palate.

The union is not that of marriage, the air filled with love and support. It is, however, a coming together of community, with an unmistakable theme of connection. Familiar faces, like old relatives, will be present and there will be hugging – perhaps a bit more careful hugging so as not to set anyone off balance – and catching up. Formal opportunities to share in the best-ofs combine with plenty of space to relax and renew.

When the couple heads off for their new life together, we’ll be wishing that we had new lives, ones without Parkinson’s, in store for us. We’ll be tired and ready to go and hoping we won’t need to attend any more of these affairs. In the meantime, as my friend, Cindy, says, until there’s a cure, there’s community. Until there’s a cure, there are big, fat PD weddings.

 

Happy Birthday, Sir T

Look who’s turning five.

sirtAmong the myriad causes for celebration of such a marvelous event lingers one I’d rather see fizzle. No. Die. And quickly.

Sir Thomas’s fifth year among us marks three-and-a-half years of partnering with me. In that time, strangers have been taking our picture. That’s 42 months. Make that 182 weeks. Shall I continue? Okay, in days, we’re talking 1,274.

Surely, you say, his handsome face isn’t snapped on someone’s cell phone every day? No. There have been, however, numerous days when more than one click of some unknown camera captures our likeness.

Therein lies my issue with the puparazzi. First, it is not our ‘likeness’ that is being captured. Second, consider that word capture.

Our images adorn the digital photo albums of people’s vacations (tourist camera-at-ready stroll-by shots), individual’s wow-ya collections (the stop-and-comment crowd who must show their neighbor, brother-in-law, dentist’s sister’s uncle) who pull out the phone with a post-focus, hand on the button May I? and proceed without listening for a response. Of course, there are those who ask, most often because Tommy reminds them of their dog, albeit a terrier or a pug.

Those images are not our likeness, however, size not withstanding. Many of those pictures show only a Great Dane. Not Sir Thomas’s true likeness of such-a-good-boy service dog because they show him without his human, being distracted by someone taking his picture.  And that ‘likeness’ that these strangers ‘capture’ gets locked-in to their image – because there it is on their phones – of what a service dog is.

No more. We are no longer a part of your vacation package or the feel-good story you share with friends.

Especially after my most recent airport experience. Traveling alone, I opted for wheelchair assistance to the gate. Sir T shifted into Pull mode quite readily considering that’s not his usual job. Despite his toes being run over several times, which didn’t help the meltdown mode that comes with the security check. As with past airport experiences, he senses all the tension and trembles, drools and dreads the pat-down. It’s my mission to get through it as fast as possible without any added tension.

Given the poker-face type that I am – not – stress was undoubtedly written across my entire body. Given the size of Tommy, it was hard to miss his quivering. But there we were, collecting items from the bin, while I was reminding him how brave he was, while repositioning in the wheelchair, while directing Tommy which way to go when the stranger in front of us stops with cell phone in position and says,

“Wait! Let me get a picture.”

To which I screamed through the entire terminal:

“Of    The    Handicapped    Woman

And    Her   Melting   Down    Service  Dog?!

  I  DON’T THINK SO.

Upon which the attendant whisked me away, never to witness her reaction.

Next time you see a service dog team, keep it in your pants. Or skirt. Or fanny pack. Rather than a cell phone, use it as a clue phone. That’s the best birthday present Tommy could want.

Fear Not

_D713697Art? Literature? Travel? All are fine topics to wrap a conversation around. Politics? Not so much, for me. There are times, however, when a discussion must include the very topic that sits in the living room like the proverbial pink elephant. The only way around is through. And my only way through is with the help of my service dog.

Climate of Fear
Fear factors rise with each news story of the verbal and physical attacks occurring at Trump gatherings. Disagree and you might become disabled. It seems not to matter that rules are broken or laws overstepped.

For a wee sense of balance, counter those images with clips of Sanders on stage, arm-in-arm with musicians singing, “This Land Is Your Land.” It makes me wonder if Trump protesters could be so easily tossed out if, linked together at the elbows in a human chain, they held no signs but merely sang – hummed, even – “This Land Is Your Land.” If there were a way to guarantee Tommy’s safety, I’d go to one of those protests.

Did I really type that? If there were a way to guarantee Tommy’s safety? At a political rally? In a country where free speech is a documented right? My protective-mother shackles should not be triggered by the potentially unsafe response to simply being there with a differing point of view. Are there bathrooms nearby? Yes, that should be my concern, not safety from being attacked by others who live in the very same country with the very same rights.

Still, I think, Trump has already used the disabled as a target. I’m old news. But the dog. A dog trained to help people. A dog trained to help people beside a disabled woman who’s singing out of key but with a smile on her face and a hand on the dog? No one doesn’t like a service dog, particularly one so regal, so dedicated, so soulful.

The one factor that would hold me back is the fear factor, fearing for his safety.

Going to the Dogs
Somehow, we need to get through the living room. And seated by the pink elephant is another that is keeping me from accessing the rest of my home. The other one has some mud-slinging and rule-breaking going on as well.

So, with Sir T by my side, here goes it:

“This land is your land, this land is my land, from the farm in Ipswich to the West Coast islands.

From the clinics for Parkinson’s, the MS centers, veteran’s associations, and the teams of dog trainers,

This land was made for you and me.” (with a nod to Woody Guthrie)

This land needs service dogs (“the need is huge– the danes are good– even great.” – from the blog of a woman I know and respect).

This land needs those who have self-respect (“I won’t be belittled.” – from the voice of a woman I know and love).

This land needs respect (“r-e-s-p-e-c-t” – from a strong female we all know and love).

If singing isn’t your thing, talk. Or not. Disagree, but before disagreeing, be sure the source and facts are accurate.

If linking arm-in-arm isn’t your thing, consider what does connect us. Disagree, but before making it public, be certain it’s not personal.

If rallying isn’t your thing, stay home. That’s okay, too. As long as, throughout this land, we’re all following the rules, not bending them. The rules of respect as well as the rules that govern the land of service dogs.

This land needs us to step up to fear. (“Be afraid. But, don’t let that scare you from doing what is right – from my father when an issue in college frightened me).

Both of the pink elephants in my living room are daunting. If the smaller one could move just a touch, I could at least get to the bathroom. The big one is likely to hang around a bit longer. I’ll keep singing to it. In between, I’ll talk about painting and books, the English countryside and, of course, dogs. There is no f-e-a-r in any of these.

Tommy Takes a Sick Day

tessblogI’m used to me waking in the wee hours to use the bathroom. When Sir Thomas wakes me to use the outdoors, it’s a sign something’s not right. The first protocol, given that he didn’t show any other signs of distress – no fever, no unusual behavior, no breathing issues, no tender areas – is to let his system settle down.

Try and rationalize with a 145-pound dog that it’s in his best interest not to eat for twenty-four hours.

Next, explain to the dentist office the need to reschedule because the dog is sick. I could’ve elaborated on the, er, size if the problem when ‘Great Dane’ and ‘diarrhea’ are used in the same sentence. Beyond the risk of needing a major cleanup, it’s not fair for me to ask him to work when his tummy isn’t well.

When we’re out and about, he’s my steed, my regal Dane cane. For the countless times I’ve relied on him for support, the role sometimes switches. Good boy that he is, beneath his vest is a being who needs to lean on me.

After some extra ear scratches and belly rubs, instead of walking with him, I stepped onto the treadmill. I set my music player to ‘shuffle’ and of all the songs, this one queued up first: Fun’s: Walking the Dog. These particular lyrics are the ones I’m singing to Tommy (and Tommy sometimes sings to me):

. . .  Stay on my side.
Don’t go.
If you could see me
Whoever I am,
It’s not like a movie,
It’s not all skin and bones
So c’mon…
I will not let you go.

Click here the whole song: (Fun: Walking the Dog)