Routines rule. When a schedule runs as planned, a sense of control washes over the daily shifts-and- takes of Parkinson’s. I feel as though I’m in charge: Me, alpha; you, disease. Sir Thomas likes his routines, too. Same food, same time and no surprises (particularly of the projectile kind). He gets a regular walk. I’m consistent with the vocab I use when he’s working. I feel as though I’m in charge. Me, alpha; you, service dog. Vacations disrupt routines. With one fast approaching, I prepared for the changes afoot – well, four feet, actually. Plus one giant head. With his schedule in flux, I figured I’d establish a holiday routine. It will help ease the transition from being home. His and mine. By weaving the same-old, same-old habits into the day – meds at regular intervals (mine), outdoor breaks at the expected times (his), standard exercise and meals as usual […]
My Parkinson’s diagnosis has thrown – heaved – perspective on my views of daily life. The irk-factor is one example. Degenerative disease, here: it takes more than a movie talker or airplane seat kicker to set me off. When I do get annoyed, I clench. Jaw, fists, eyelids. It doesn’t happen often and when it does the yogi in me tries to breathe through it, let it go, talk it out. On occasion, I yell. If annoyed moves into crazy-angry mode, I curl into a fetal position and cry. It takes something monstrous from daily life to get me there. Remember: Degenerative disease here. Incurable. Well, I encountered my first service dog fake. Not only is it a challenge to type with my fingers curled, it’s hard to see the screen though this blur of tears. I knew about them, heard stories. They clip a service dog vest purchased online […]
Of the 3,300+ delegates attending the 2013 World Parkinson Congress, 2,300+ were dog lovers. Sir Thomas turned heads along the cobbled streets downtown as well as on the carpeted stretches between presentations at the conference center. Cameras flashed, comments flew in more than one language: Mon Dieux! C’est un cheval! Does he have a saddle? The paparazzi aside, people also stopped us not just to ask what breed and whether I rode him to the conference, but what service he provided. I was among others whose balance is challenged and their curiosity sprang from experience. Many came to the Round Table I co-hosted on Service Dogs – for anyone who missed it, the presentation slides can be downloaded here.(Special thanks to Carolyn Weaver — and Selma — for sharing their expertise.) The yoga sessions were well attended and the creativity panel was fun. The poster sessions drew a crowd – those, too, can be […]
Air travel poses innumerable challenges even to the least physically challenged among us. When Sir Thomas and I fly, we add four giant legs to the already crammed space called Leg Room (which is tight with my two legs). Delays, angst, discomfort all add to the stress of flying. So it’s safe to say that stress was on board the USAir flight that is in the news regarding the blind passenger and his service dog. Blind-man-with-service-dog causes one to, well, look. Whether it’s blindness, chronic disease, birth defect, mental illness, baggage or botched surgery, we’re all dealing with something that places us just this side of normal. My ‘something’ happens to show in the way I walk. Add a handsome, four-legged cane to the scene and we, well, we make for quite a scene. People look. They watch, comment: “Beautiful dog” or “What’s he do?” or “Are you training him?” […]
More Travels with Tommy After I noted all the must-see’s in the travel guide, I made an inventory of might-be trip challenges ahead. I admit I was concerned about flying (always interesting, particularly with a giant dog) to the Caribbean (my first time!) to spend Christmas (BIG holiday with potentially big stresses) with family. My intention was to keep the challenges of travel – particularly with a service dog – to a minimum. With this in mind, I set out to be organized and prepared. I kept a folder of island highlights as well as do-not-forget scribbles (sunscreen! dog food for the plane!). I also adorned Tommy’s vest with another Do Not Pet badge and tucked and a copy of his rabies certificate in the side pocket. With a focus on minimizing distractions, I planned and predicted. I was ready with my Here’s-how-you-can-tell-when-he’s-working talk for the dog-loving relatives we were […]
In the midst of the food court’s strutting teens and screeching toddlers, Sir Thomas folded onto his mat in that sphinx-like move that Danes do and gazed those soulful eyes at me. I instantly aimed my phone at that regal pose (he’d even crossed his front paws!). But instead of his handsome image appearing on my screen, a message popped up: “Cannot Take Photo.” Apparently there’s a limit to how many I can store on my phone. Namely, 2,990, according to the count at the top of the icon. Smells of pan-fried, deep-fried and stir-fried lunch surrounded us as I focused on getting that picture. I deleted 277 blurry selfies and inside-of-my-purse auto-shots. But the phone insisted I was still out of storage space. Thomas let out a deep sigh, uncrossed his front legs and lowered his heavy head to rest between them. His message seemed clear: stop struggling to […]
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 […]
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 .