Tag Archives: Dystonia

Me 2.0!

8480264 - running girlPost DBS, my life has been revolutionized by a startling revelation: Traveling from Point A to Point B is as “effortless” as moving from one foot to the other! I exist in a surreality I never could have imagined. Who would have thought I’d ever be in a position to compare and contrast smooth and twisted gait! Conquering distance has become user-friendly. Has NYC shrunk? This on-the-go rookie well knows the act of walking straight is deceptively simple – even miraculous – and with profound effect. Now that all my ducks are lining up in a row, I attach new meaning to the words “independently mobile.”

I stand before you “Pam 2.0” – action-oriented, driven and efficient – roaring out of the gate to tackle my errands and responsibilities with the vigor of an NFL linebacker. I’d never grasped the smooth side of multi-tasking or the effervescence of living life on the run. Dystonia erected a prison of limitations constraining my every effort…in ways even I didn’t fully appreciate. Sojourns out of my neighborhood loomed daunting. Rain or inclement weather provided a convenient excuse to stay home. For many years, life passed before me in lackluster shades of grey. My involuntary movements and their psychological toll crowded out the innumerable possibilities that lie within arm’s reach when we’re not squandering energy struggling with basic bodily operations. Now I feel free as a bird spreading her wings for the first time.

They say life is about the little things. For me, life is about a wealth of glorious but supremely basic minutiae virtually invisible to most of us…empowering us to enjoy a magical day!

 

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I Will Survive!

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At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Thinking how you did me wrong
And I grew strong
And I learned how to get along…

After a tumultuous 40 year relationship – plaguing me with a myriad of annoyances – I’m finding it challenging to cut the cord with my anticholinergic, even now that my brain bionics are waiting in the wings. Flexing its muscles, my anticholinergic is determined to stick around for Act II. However, I’m equally determined to boot him off the show.

Hardly known for my patience, I’ve exhibited unprecedented forbearance in the painstakingly slow process of Walking The Plank, even, shockingly, proactively taking a detour from the weekly weaning schedule when my walking grew funky. It’s all a delicate balancing act of amping up the power to compensate for lost “juice.”

With grad school awaiting me in the fall, I’d love to restore my short-term memory and normalize my urination so I’m not constantly rushing out of class for an impromptu rendezvous with the ladies room. The dream of being pill free shines strong, fortifying me with resolve to go the distance, no matter how long it takes. So Mr. Anticholinergic, as Gloria Gaynor sang so well:

Go on now go, walk out the door
Just turn around now
‘Cause you’re not welcome anymore
Weren’t you the one who tried to break me with goodbye?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh no not I, I will survive…

May I Have A Glass of Water?…Revisited

dreamstime_xs_9470300 editedIn 2012, I shared my deepest, darkest phobias about my speech in a post titled “May I Have A Glass Of Water.” Notwithstanding 4+ years pounding out my anxieties on this site and finally conquering my self-consciousness over my gait – ironically at a time when my involuntary movements are fading away – I continue to entertain a disgruntling hyperawareness of every word I utter.

During conversation, I find myself a decidedly un-detached observer, appalled at the sounds that just emerged from my mouth despite my earnest efforts to enunciate. I’ll practice a word in isolation again and again only to mutilate it during conversational speech. Too many words continue to evade me and I’m starkly aware of the abundance of sounds I misform.

Since DBS, I’ve been operating on speed dial, sentences tumbling out faster than I can articulate them. In an effort to climb out of my ditch, I resort to conversational CPR, searching my inner thesaurus for synonyms to toss out to my confounded listener…or literally spelling out words l-e-t-t-e-r b-y l-e-t-t-e-r. Conversation presents a bout of oral gymnastics that leaves me exhausted.

Recently, I stood on line at Starbucks on a Saturday morning, all set to tackle a monumental challenge: ordering a Grande Decaf Soy Latte. The barista stared at me in confusion, then slipped a blank piece of paper and pen across the counter. Gulping down my pride, I dutifully wrote out an order I knew I’d never properly execute orally. Perhaps next time, I’ll opt for tea!

Dogs For Dystonia: My Ellie Bellie

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As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I’m moved to consider all my miniature schnauzer – Ellie – has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She’s my steadfast companion virtually everywhere I go and I’ve connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie’s momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to – though certainly not matching – Ellie’s and we’ve become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives:

Click here to visit the Dogs for Dystonia Website. Ellie invites you to join her by registering your dog: Dogs For Dystonia Virtual Walk

Ellie is committed to curing Dystonia! Click here to make a donation: Donate In Honor Of Ellie

Happy Holidays!

Sending You and Your Family My Warmest Wishes for a Joyous Holiday Season and a Happy New Year!

-Pamela-

 

The Laws of Motion

Sir Isaac Newton, take note, my Dystonia has served as a vivid example of your 3rd Law of Motion gone haywire: For every [voluntary] action there’s an equal and opposite [involuntary] reaction.

Now that the involuntary kinetic forces generated by my voluntary movements have begun to magically disappear, walking is no longer a contact sport. I feel as if I’ve fallen down a wormhole and emerged into a parallel universe where Newtonian mechanics have drastically simplified. My alternate reality gives me pause as I adjust to my newfound freedom. Who knew walking is as easy as putting one foot in front of the other and telling your legs where to go? Destinations that formerly loomed as remote don’t seem quite so far away.

When I trudged around the city with my walker, I measured distance by the corresponding depletion in my energy and operated on a permanent power outage. Every ounce of my being directed an overwhelmingly focus to the technical details of getting from Point A to Point B…with little thought for my destination – and scant attention to the scenery along the way. Post DBS, my energy quotas have completely transformed. I make my way around my neighborhood with power to spare enjoying the local landscape. Think of me as a bee buzzing along on full throttle as I relish the “conserved” energy I previously expended on the mechanics of walking.

I’m not the only one benefitting from my newfound energy. My puppy is thrilled to have a new training partner. Now she’ll have to learn to keep up with me (lol)!

Solo Act

Having been a “solo act” for a little over a week, I’m ready to – knock on wood – announce my new status! The occasion of our break-up was simple: in a miraculous burst of post-DBS reality, I came to the realization that my shiny blue walker had outlived his usefulness. At its genesis, our relationship stood a marriage of convenience. My inner stubborn mule protested his attentions – until it became abundantly clear my new friend offered benefits! The rock by my side, he protected me from a precarious loss of balance, carried my packages…and my puppy, and offered a spare seat on a desolate stretch of street.

Now that I’ve left my walker by the wayside, I find myself in a strange new reality. At times, I reach for him as I leave my apartment. After all, over the course of 2+ years, his constant companionship became a force of habit and, I’ll admit, a bit of a safety blanket. Life without him may be strange but it’s neither cold nor empty. Not quite used to navigating the local terrain without my hot wheels, I instinctively head towards ramped walkways when stairs have pleasantly become an option. Mind you, my gait still has its quirks and I entertain an unfounded concern that the full force of my involuntary movements will return.

Now that I’ve gone solo, there’s no turning back. Indeed, in a bizarre psychological conspiracy perpetuated by my feet, my brain and my “ex,” a dalliance with my walker actually makes my Dystonia worse!

BATTERY emPOWERED FEMALE

16542931_sLast month, I aced my starring role during neurosurgery. Now that my neurostimulators have been powered on, I find myself in a constant state of heightened hyper-awareness of my movements making my body the “star” of every moment.

This new chapter in my DBS saga began at my first programming session. I arrived determined to keep rising expectations at bay. Deftly manipulating her remote control unit, my savvy programmer began to work her magic. She turned the key in the ignition and took each “launch pad” on my electrodes for a test ride in search of signs of rough driving ahead.

Like my oral meds, neurostimulation can exert unwanted “side effects.” Now that all systems are go, I’m perpetually on the lookout for an inimical twist, twitch, jerk, grimace or spasm as I continually search for signs that the electric pulses in my brain are exerting some untoward effect. I struggle to recall the details of my involuntary motions pre-DBS for purposes of comparison but find this to be a futile task thanks to the ever-changing choreography of my Dystonia.

In the meantime, I’m officially electronically enabled. I stand before you a BATTERY emPOWERED FEMALE “humming” strong at 2.5 volts! With my handy remote, I can power myself on and off like a TV set. Plug me into an outlet, and I’ll light up the room!

New York City Taxis: Where’s The Beef?

26323991 - taxi driver - road rageAs I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?

I concluded that I needed to park my walker at the curb behind me and hail a taxi as a solo act. Of course, as soon as I turned towards the sidewalk, my gallant appeared, sharply braking beside me. Putting his fellow cab drivers to shame, he whisked my walker into the trunk with aplomb, After all, it doesn’t take Mr. Universe to manipulate a few pounds of folded metal.

I hold abject disappointment in NYC’s private transportation corps, which, for a pretty penny, is my first line of defense against the perils I face using public transportation.

 

 

My Starring Role During Neurosurgery: The Woman In The Iron Mask!

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Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.

Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”

With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!

Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…

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My amazing Mount Sinai neurosurgeon is second to none!

 

Lions, Tigers and Bears, Year 2!

9287823_s editedLiving with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!

I’ve also discovered that FUNdraising can indeed be FUN. Dystonia Zoo Walks empower us to advance our cause while checking out lions, tigers and bears, oh my!

For those who live in the New York City area, I hope to see you on September 18 for a memorable day of Dystonia fundraising and awareness at the Bronx Zoo. We offer a unique “twist” on traditional charity walks, as there’s no formal walking course. Jump-start your Sunday with family-friendly festivities – perhaps win a raffle prize – and then meander your way through the fabulous Bronx Zoo. Of course, you’re welcome on board Team Dystonia Muse! Can’t join in the fun? We’ve got you covered. Support us by making a donation.

Use the following link to register:  Bronx Zoo Walk Registration
You can sponsor me here:  Pamela Sloate’s Personal Page

From the bottom of my heart, I thank you for reading this blog and supporting my journey. With a team effort, we can eradicate Dystonia!

-Pamela-

2016 Bronx Zoo Walk Postcard Image

 

 

Making Lemons Into Lemonade!

I’ve been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”

Turning Lemons Into Lemonade never disappoints. I laud the virtues to be found in identifying positive outcomes for our negative situations without unduly minimizing our struggles. My friends may reassure me that it’s ONLY my hair – which will certainly grow back – but my solace hardly lies in downplaying the significance of our locks. After all, I’m a female with a telling history of life-defining dos. Rather, I find my comfort recognizing the importance of our hair by making a donation. With a few trips to Google, I’d surveyed the landscape and located a nonprofit, Children With Hair Loss, more than happy to claim my mane, chemical highlights and all.

For those about to part with their hair or seeking to lighten their load, check out the following organizations spreading sunshine with their good works:

Children With Hair Loss
Locks of Love
Pantene Beautiful Lengths

Summer Sentenced Me To Hard Labor!

For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.

The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.

Surgeries anyone? Sign me up!

Surgeries Anyone?

Here’s an attractive offer:  Let’s shave off your hair, immobilize your head in a vise, drill a hole in your skull, insert an electrode into the right side of your brain, and wake you up for some fun in the sun before closing that hole. Then, invite you back to do it all again, left side this time – before implanting two battery-powered neurostimulators into your chest and snaking wires under your skin that enable us to activate those electrodes with electrical currents.

No, it’s not some twisted version of electric shock therapy but Deep Brain Stimulation (DBS) – perhaps not shocking your socks off but, hopefully, improving your neurological movement disorder, which is why you place that bet. Why not embark on a wild ride to slay the never-ending, hair-raising roller coaster commandeering life with dystonia?

Of course, your vanity interjects itself. After all, they’re shaving your head twice, replacing your lush – or not so lush – locks with a barren plain. As for the “awake” part, fancy chatting with your surgeon while he’s navigating an intruder into your brain. Then again, you find yourself trudging your way through your 30th college reunion, holding on to your walker for dear life as a once-familiar campus morphs into a forbidding obstacle course. Watch the impossible become plausible when mastering each step presents a triumph of will. Those looming procedures take on a whole new light, vanity and apprehension fading into luxuries you can ill afford.

All roads lead to Rome. Chin up, three surgeries, here I come!

 

Fiddling

13185761_sIn the movement disorder world, “fiddling” has nothing to do with a musical instrument. Like the baby bear sampling bowls of porridge, I’m forever fine-tuning my meds in an overarching effort to get things “just right.” My “fiddling” is motivated by a precarious balancing act featuring a myriad of distasteful side effects encroaching upon my quality of life.

Patients be warned: “fiddling” is for the bold and the brave, every adjustment laden with a risk-bearing proposition. In my present alternative reality, I’m battling the lingering damage inflicted by a downswing in my main med even though I’ve climbed my way back to my prior dose. Voila, the sole result presented by my most recent game of risk is the companionship of my walker. Apparently, elimination of my parade of side effects requires elimination of my anticholinergic, a venture to the Deep South I’ve yet to undertake.

But there’s a moral to this story as I seek to live life without regrets, well understanding that our meaning decisions unavoidably lack the luxury of hindsight.

“Perks”

45057482_sWith my walking in a state of disarray, I’m on the prowl for creative ways to count my blessings. My challenge is rather monumental. “Seek and you shall find” takes on a whole new meaning when it comes to discerning the silver lining in Dystonia.

I’ve discovered one “perk” traipsing the city streets with my puppy. Courtesy of the deterioration in my gait, our daily walks stand as true workouts, enabling me to indulge my sweet tooth without penalty. The collective force of my involuntary movements simulates a walk in a wind tunnel, leaving me breathless in the span of a few short blocks for a potent bout of cardio.

Convinced I’m burning calories with every laborious step, I entertain bizarre satisfaction struggling against my unruly muscles. In a nod to my inner obsessive-compulsive, I’m forever recalculating the territory I cover as I push forward to go the distance, awash in determination to ace at least one super-sized “power walk” each day. Another “perk” worthy of mention: nailing a generous swath of city blocks ensures I’ll be sleeping soundly that night.

I may count my victories in the slow lane but this sure beats counting calories!

Season’s Greetings From Chronicles Of A Dystonia Muse

6001779_s_Fotor Holiday 2015

Sending out my warmest wishes this Holiday Season.

May 2016 be a year blessed with peace, joy and hope for all!

xxx

Pamela

Happy #GivingTuesday

45088058_s editedThanksgiving offers us a chance to give thanks for the treasures we enjoy – our families, friends, callings, the bounties decorating our lives. Most appropriately, Thanksgiving is followed by Giving Tuesday, a day bestowing the opportunity to actively express our thanks for all we have by giving to the causes in need of our support.

For me, this Giving Tuesday is particularly poignant as I celebrate The Martin & Roberta Sloate Dystonia Research Fund and the hope it embodies as we look forward to a better tomorrow. I’m forever grateful for my parents’ wide-reaching contributions to the Dystonia community in a heartfelt effort to make my world a better place and catalyze critical support for all families impacted by Dystonia.

I invite everyone to join with me in sending out a message of hope today on the occasion of Giving Tuesday. You can donate to the fund established in my parents’ honor at the Dystonia Medical Research Foundation, a place they called home, using the following link: The Martin & Roberta Sloate Dystonia Research Fund.

xxx

Pamela

Life In The Trenches

5365287_s_editedI’ll confess, for most of my life, I didn’t view myself as “disabled,” reserving this term for those with even more extreme physical liabilities. Yes, I felt “different,” but it never occurred to me that Dystonia qualified me for membership in any kind of exclusive club.

In my confused reality, I viewed individuals with disabilities as mirrors of my own imperfections, reflecting a self-image I couldn’t bear. Now I simply see people whom I count among my closest friends for reasons that have everything to do with the spirit their hearts embrace. No saints or heroes, just soldiers on personal battlefronts waging reluctant but necessary combat. After all, life is lived in the trenches not on a pedestal.

My argument with the whole concept of disability is how it creates a notion of us vs. them. Those of us with chronic illness don’t conduct ourselves by majority rule or elect representatives to a special Disability Congress to proclaim declarations of common attitude and award badges of merit for supposed acts of heroism. We take our lives thought by thought, day by day.

Think you’re so far away? Challenges abound for all of us, what’s your struggle? You could even try it for a few minutes, an hour, a day. Blindfold yourself. Shake your arm every time you eat, drink, write, keystroke, or play an instrument. Spin around crazily, then swim and sway down the street. Attempt 24 hours in a wheelchair. Do you feel to be a “sore thumb” or is your entire attention focused on your tasks? How much of you feels “able” and how much “unable?” It’s not our physical differences that mark us with a scarlet “D” but how society finds the need to distinguish us by them. The only “sore thumbs” are those thusly viewed by the rest of the hand. How about examining the degree of perfection the other fingers can claim!

The lesson I try to embrace every day is that each of us is a composite of unique information, no one aspect so particularly remarkable that we stand out as any more “different” than the person sitting or standing next to us. When it comes to my personal data, Dystonia is a fact tucked into the details of my life that’s completely uninformative regarding my worth as a person. While Dystonia is a bit of a visual drama queen, why it should dictate a “one size fits all” label is beyond me…and unfortunate.

I’m just like everyone else. I carry hang-ups, sport frustrations, worry about inconsequential details, celebrate life, laugh, love, dream, and strive to hold inner peace. May you find yours as well.

Lions, Tigers & Bears, Oh My!

9287823_s editedLiving with chronic illness, we must strive to celebrate the moments where we find ourselves and seek out occasions to celebrate. Zoo Walks are cross-crossing the country and I’m thrilled to welcome the inaugural Bronx Zoo Walk to the Big Apple on Sun., Oct. 4, 2015.

This event is so much more than a FUNdraiser – it’s a wellspring for our hope and fuels our unity of purpose. Conditions like Dystonia disempower us from exercising full bodily autonomy as we transact the business of our everyday lives. The Zoo Walks present an opportunity to transform ourselves into empowers working to secure a better tomorrow. We’re looking to take one ferocious bite out of Dystonia and cage that wild beast!

I invite everyone to join the tri-state Dystonia community for a day of awareness and hope at the Bronx Zoo on Oct. 4. Proceeds benefit the Dystonia Medical Research Foundation (DMRF). You can register using the following link:  Bronx Zoo Walk Registration

Enjoy the zoo as part of Team Dystonia Muse by inputting “Dystonia Muse” as your team when registering. Note there’s no racing involved, just a leisurely day at the Bronx Zoo. If you’re unable to attend, you can join us in spirit by making a donation to Team Dystonia Muse here:  Donate To Team Dystonia Muse

I must include a warm thank you to the partners helping to ensure that the Bronx Zoo Walk is a memorable day: Allergan, Amsterdam Ale House, Bella Face Painting, Ben Asen Photography, Caricatoonist, Chocolate Works, Church Publick, Feinstein Institute for Medical Research at North Shore-LIJ, Ipsen, Lucy’s Whey, Magnolia Bakery, Massage By Touch Evolution, Merz, Mount Sinai Beth Israel, Parlor Steakhouse, Sarabeth’s, Serafina, Superior Soundz Entertainment, Third Avenue Ale House, US WorldMeds, Whole Foods Market, William Greenberg Desserts.

Check out these upcoming DMRF Zoo Walks:

Cincinnati Zoo Walk, Sept. 12, 2015
Register here:  Cincinnati Zoo Walk Registration

Cleveland Zoo Walk, Sept. 19, 2015
Register here:  Cleveland Zoo Walk Registration

Binghamton Zoo Walk, Sept. 19, 2015
Register here:  Binghamton Zoo Walk Registration

Pittsburgh Zoo Walk, Sept. 27, 2015
Register here:  Pittsburgh Zoo Walk Registration

POST SCRIPT-  Visit my Bronx Zoo Walk Photo Album on Facebook using the following link:  Bronx Zoo Walk Album.

Team Dystonia Muse