Sir Thomas greets each morning with a romp and rip through the yard, his tail high and happy. Dinner continues to be met with a lot of wagging. As does breakfast. As does snack time. As does the opening of the plastic container with leftover ham in it. Recently, however, by day’s end, the spring in Tommy’s step has sprung. Late afternoon, he’ll saunter up beside me and I notice that I have to slow my pace to his. It might just be that my mighty boy is telling me he’s getting tired. Perhaps that’s what the ‘tire’ in retirement means. The word conjures up images of golf clubs, very white sneakers and dinner reservations by 5:00 pm. The actual definition is retreat, withdraw, leave service. So, when should a service dog leave service? Google the question and hundreds of varying recommendations appear on screen, none of which derive […]
If you have a service dog and want to continue to have your access rights backed by the Americans with Disabilities Act (ADA), you’d best phone your Representative in Congress. Today. The ADA grants access to all Americans. Movie theater, bank, café, laundromat: all Americans can enter. The “ADA Education and Reform Act” (H.R. 620) places business interests ahead of all Americans. ‘Reform’ means change toward improvement. The ADA is good, no change needed as it provides equal access. This reform bill, however, is not. It will re-form access requirements. Disabled and can’t get access to a public place? Write a letter of complaint. That’s a change, alright. Don’t let it happen. Please call your rep and ask that this bill be stopped from ever becoming law. Ask that it be stopped from even going to the full House for a vote (the House Judiciary Committee meets Thursday morning). […]
It’s been happening more and more. Just yesterday there were two instances: once at a restaurant, the second at the grocery store. The setting changes, but the scene plays out the same: A small child catches sight of Tommy, glee sweeps him off his tiny feet and propels him toward us. But before those little fingers catch hold of some fur, a parent grabs hold of the situation. How? They don’t grab hold of their kids. They don’t block, tug or scold. I’m seeing more and more young moms and dads pause, wrap an arm around the child, fold down to talk to them at their level, maybe even, for a moment, ooh and ahh at the size of the dog. What I’m hearing more and more of is: “Yes, he is a beautiful dog. But See his vest? He’s working.” “We’re not supposed to pet him. He needs to […]
In the fall, ECare Diary, an online site for caregivers, interviewed me on the role service dogs for people with movement disorders. (Click here for the interview.) Following up, a listener asked what may seem a simple question: What’s involved in taking care of a service dog. The answer, which in some ways is never fully complete because a great deal depends on the dog, was far too involved to answer in a few short sentences. I was invited as a guest blogger to post my answer, and here it is: Taking Care of Each Other .
It can be a tough go living with this ridiculous disease, no doubt about it. Yet, I can look back with gratitude. For when the going got tough, I got going. On vacation. With a bunch of guys. Andy Pre-Parkinson’s vacations with my husband routinely involved bicycles. We strapped on the panniers and rode circuits dotted with B&Bs, each a day’s distance apart. Whether rolling across England or New England, we’d wake to the aroma of bacon and coffee, load up, enjoy the scenery, fresh air and exercise before the next inn. It all added up to: Ride, rest and repeat. Alas, there was a down side: pets couldn’t come along. Oh, and one other: heavy rain. When the dark cloud of a Parkinson’s diagnosis tried to rain on my cycling getaways, Andy, thankfully, was quite flexible. Rather than touring the perimeter, we settled in and, […]
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 […]
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.
Ever 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 […]
I 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 […]