Dispelling Cerebral Palsy Stigmas

Too often the discussion about cerebral palsy focuses on negatives, but two individuals look to help change that. Over on Twitter CPers Kate Meuser (@katethemuse) and Timmy Le (@Timmmyy_Le) began a campaign that utilizes a hash tag, #WhatCPLooksLike. As Timmy tells in his August 15th tweet,

“Starting a campaign w/ @katethemuse about dispelling #CerebralPalsy stigmas by using #WhatCPLooksLike to show what CAN be accomplished.”

#WhatCPLooksLike aims to create a positive cerebral palsy reflection

What does cerebral palsy look like to you? Photo: “Make-up mirror” by Jurii – Own work. Licensed under Creative Commons Attribution 3.0 via Wikimedia Commons – http://commons.wikimedia.org/wiki/File:Make-up_mirror.jpg#mediaviewer/File:Make-up_mirror.jpg

Obviously I’m all for the idea given I’m writing this post. Now I’m proud to know both Kate and Timmy from the live weekly Wednesday evening CP chat #CPChatNow (8pm EST). If the #WhatCPLooksLike tweets provide an accurate indicator, others from the #CPChatNow community share my sentiments.

So far according to the hash tagged tweets cerebral palsy looks like academic achievement, leadership, and athletic accomplishments. For instance Timmy shared a video showcasing him breaking a board during a Dan Tae Kwon Do exam.

Another #CPChatNow regular Devin (@AdventuresInCP), tweeted a photograph showing him receiving Who’s Who Amongst Grad Students honors. Susanne Brasset (@hazelmist) tweeted out a photo showing her working as a lifeguard.

For my first #WhatCPLooksLike contribution I posted a link to my latest Youtube video.

Honestly I began working on the above video last month prior to the #WhatCPLooksLike campaign. My goal proved to get others to view exercising with cerebral palsy differently. The intensity displayed during the various Rocky montages make them impactful.

By creating “If Rocky Balboa had cerebral palsy…” I desired bringing a similar intensity to exercising with cerebral palsy. Essentially I aimed to dispel any inferiority stigma surrounding exercising with CP, making the video a natural #WhatCPLooksLike fit.

If you have cerebral palsy, do your part to eliminate CP stigmas by sending out some positive #WhatCPLooksLike tweets. Together, we can change the cerebral palsy conversation.

Goal to Walk a Half Marathon

Me after my Inside the Park Home Run walk

Hanging out around Progressive Field’s visitor dugout after completing the Inside the Park Home Run fun walk.

Last weekend I participated in the Inside the Park Home Run event at Progressive Field, which featured a four-mile run and one mile fun walk. Now I completed the latter, marking my first official mile since elementary school. Heading into the event excitement filled me. The course ended on Progressive Field, sacred land to a big Cleveland Indians fan like me. More so though, the event represented progress in my goal to walk a half marathon.

Flashback three plus years ago to March 2011 when I read Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy by John W. Quinn. Reading about John’s Navy career left me wanting more experiences for my life. Specifically I desired to challenge my body’s limits the way John did every day at sea serving our country.

At the time two friends I saw weekly Alex (RIP) and T.jaye remained hard at work training for a triathlon, leaving me to think “I’ll run, well walk, a marathon.” Further thought led me deeming a half marathon a more reasonable goal. After all, back then I maxed out at four miles on my stationary bike.

With a goal set, I casually began training. Very casually! To build up my endurance I turned to my stationary bike. December 2012 I completed 13 miles on my stationary bike for the first time. Walking 13 miles however proves more difficult due to my gait. Thanks cerebral palsy!

While I started walking more, again I did so very causally. The Inside the Park Home Run fun walk leaves me motivated to work harder. Following my casual mile completion time 28:01 I’m curious what time I could achieve if I give 100%.

Buying a pedometer becomes a priority for me so I can track my distances walked and work down my times to the point where I can complete a 5k within a reasonable mark, my next short-term goal on my journey to a half marathon.

How about you? What long-term goals do you possess? How do you plan to get there? Share via commenting below.

Disability Portrayal in Guardians of the Galaxy

Groot and Rocket Guardians of the Galaxy Poster

Guardians of the Galaxy promotional poster featuring Groot and Rocket. Photo: IMDB.com

This past week I saw Guardians of the Galaxy, with absolutely no expectation the movie might give me a subject to blog about. Yet talking to a friend afterwards I wound up drawing a parallel between individuals nonverbal or low verbal due to a disability and the character Groot. While I’ll refrain from any major movie spoilers, beware the following will contain minor ones.

Groot’s vocabulary remains limited to one phrase, “I am Groot.” Certainly this qualifies him as low verbal. Due to Groot’s lacking vocabulary, his companions often call him words like “stupid” and “idiot.” Basically they assume ignorance, an assumption commonly made in society towards low verbal and nonverbal people.

However all movie Groot comprehends the events going on around him. His actions prove that. Minus one scene where Groot acts impulsively, he makes no choices demonstrating poor intelligence. Actually even his impulsive act does not portray poor intelligence, just little patience.

Groot’s closest companion Rocket naturally treats him the fairest. Unlike the others Rocket turns to nonverbal communication cues, mainly tone of voice, to define the meaning behind each “I am Groot.” In a way Rocket and Groot’s relationship holds similarities to someone nonverbal or low verbal and those close to the person.

Probably to anyone besides a disability advocate, Groot comes across as comic relief. Personally though I believe the character provides much more. Please consider this post a challenge. I challenge you to go beyond the basics when watching Guardians of the Galaxy. Compare Groot to nonverbal or low verbal individuals. Allow the comparison to identify the unfairness to assuming ignorance, and remember that next time you feel tempted to assume ignorance.

How Do You Think About Your Cerebral Palsy?

Over the past two months a certain word set appears reoccurring in my blogging and vlogging endeavors, “with cerebral palsy (CP).” Just take a look.

“Shoe Shopping with Cerebral Palsy”
“Concert Going with Cerebral Palsy”
“Going to the Ballpark with Cerebral Palsy”

How do you think about your cerebral palsy?

Image courtesy of Master isolated images / FreeDigitalPhotos.net

This catches my attention because when going about these activities I’m not consciously thinking “Oh, I need to keep this in mind because of my CP.” Last year when I saw Tim McGraw at Blossom I didn’t say “I better bring my cane because I have cerebral palsy.”

Instead I think about my specific symptoms. So take the Tim McGraw example I already brought up. I grabbed my cane before heading out to the concert because I thought “I want to be as far down as possible on the lawn seats. I’ll need the cane so I don’t fall going down the hill that is the lawn area.” In said instance I’m focusing on neutralizing my balance issues rather than the label cerebral palsy.

How about another example? When shoe shopping I’m not thinking “Will these shoes work with my CP?” Nope. I’m thinking “Will my inserts fit into these shoes?” I consider my inserts something I need in the same way a cop needs a badge or a waitress needs to balance a tray filled with drinks or food.

Really internally I rarely use the words cerebral palsy. Only when I share my experiences, do I turn to my diagnosis. The term cerebral palsy maintains one valuable function I believe, to communicate. Us in the CP community can communicate with each other and express comparable life experiences. Similarly we can communicate to the able-bodied world and create better CP awareness.

Inside my own head though, I don’t need to communicate about CP because I already know. I recognize my poor balance and other special needs. However, I view those in context with who I am as a whole person. To me I’m Zachary, a talented writer, avid Cleveland Indians fan who happens to walk a little differently and needs a rail to ascend/descend stairs.

If you have cerebral palsy, let me pose a question to you. How often do you use the term cerebral palsy internally within your thoughts? Please answer by commenting below. Thanks!

Shoe Shopping with Cerebral Palsy

Shoe Store Aldo

Cerebral palsy adds difficulty to shoe shopping. Photo: David Shankbone/Wikimedia Commons

When going shoe shopping, what factors do you keep in mind? To the average person I’m guessing common answers might include price and style/design. Now I can only guess since my cerebral palsy (CP) adds factors most people probably don’t need to consider.

Early on in my memoir Off Balanced (available on the Kindle, Nook, and i-Pad via the free Kindle app) I mention wearing high top shoes as a kid. The high tops worked to hide the DAFOs (dynamic ankle foot orthoses) I wore, which aided my childhood agenda to hide my CP.

Years later I still limit my shoe shopping to high tops. These days the reasoning stems from practicality rather than embarrassment over my disability. High tops provide my ankles extra support, support lessening my wobbliness. This support proves essential given I no longer wear DAFOs.

However I still rely on foot orthotics, custom made shoe inserts specifically. Amongst their purposes, my shoe inserts neutralize a significant height discrepancy with my legs. So you might say my inserts play important roles in my ability to move the best I can. Thus I must buy shoes the inserts will fit well into.

My custom made shoe inserts

The shoe inserts I need to keep in mind when shoe shopping.

Finding that right fit can prove difficult. For instance this week I passed on certain shoes I really wanted. My inserts did not fit the 8.5 size. Depending on the shoe I can also wear nines. While the insert fit well into the nines, my foot did not. Too much space up by the toes! Ugh!

From the weekly cerebral palsy Twitter chat #CPChatNow (Wednesdays 8pm EST/Use #CPChatNow) I know shoe shopping stands a frustrating task for many in the CP community. My own case only demonstrates a couple issues. Some with CP may experience trouble tying shoes. Others may baffle the shoe department staff with two different size feet. Bottom line, the frustrations vary person by person.

If you possess an interesting shoe shopping story whether due to cerebral palsy, a different disability, or another factor please feel free to share by commenting below. Thanks in advance for adding your insights!

Guest Post: Keeping Up with Medical Safety Alerts

After reading Kathleen Statham’s memoir Warrior Woman (my review here) and witnessing my aunt’s continual battle with leukemia I recognize the impact a patient makes in his or her medical case. With that said I want to introduce a special guest post from Mario Trucillo. Mario gives insights on one way you can stay informed about medical safety as a patient.

If you find it difficult to keep up with every aspect of your personal health, including information about medication and medical devices, you aren’t alone. Millions take prescription drugs on a regular basis. Others have found new opportunities to remain active through artificial joints and other prosthetics. With the large number of people now seeking medical attention and the great strides being taken in medical science today, many medical professionals don’t have the time to provide proper one-on-one consultation with individual patients.

prescription drugs

Become more knowledgeable about your prescriptions at http://www.recallcenter.com. Photo: Bmramon at en.wikipedia

If you’ve struggled to understand your medical options or have questions about drug interactions, dietary restrictions, and/or treatment options, you need a place where you can turn for accurate, personalized information. The American Recall Center is here to help. Their website provides up-to-the-minute information on a full range of medical treatments and medications from hip replacement to dangerous drugs. Patients can access this information before an appointment in order to prepare. You can also use the website to acquire supplemental information following appointments or between checkups.

The American Recall Center focuses on empowering patients. They provide easy-to-understand information about prescriptions, medical procedures, and other medical treatments. Their website steers clear of medical jargon and carefully defines terminology in order to help patients comprehend each concept and medical warning. With plain language explanations of medical procedures, you can be full armed with facts at all times.

In order to best arm patients with important medical facts, the American Recall Center provides exclusive Patient Safety Alerts. These personalized messages help keep registered patients informed whenever an FDA message affecting them is released.

To take advantage of Patient Safety Alerts, simply go to the online database listing drugs and medical devices. Select those that affect you. Once this is done, you will receive an email alert anytime the FDA issues a safety update concerning the products you have selected. As long as you keep your selections up-to-date, you’ll never have to worry about missing an important FDA update again.

Yahoo! Voices Closing

On Thursday, July 31st Yahoo! Voices (www.voices.yahoo.com) will cease to exist and by mid-August the corresponding Yahoo! Contributor Network (Y! CN) will also become history. Yahoo! Voices and Y! CN succeeded Associated Content (AC) after Yahoo purchased AC a few years back. Now I’m mentioning the shutdowns because they will result in bonus posts here. Allow me to explain.

Between 2009 and 2011 I wrote various cerebral palsy (CP) related articles still currently published on Yahoo! Voices. These pieces arranged from book and music reviews to informative articles, interviews with individuals in the CP community, and more. Once Yahoo! Voices ceases existence, I’m free to re-publish said articles elsewhere.

After some thinking I decided to take the best 10 CP related articles and publish them here in a special series. Considering the seemingly increasing popularity in “Throwback Thursday,” Thursday feels like the right day to share the bonus posts.

Yes, I know Throwback Thursdays involves posting old photographs. Why let images enjoy all the fun though? Hopefully through my special Throwback Thursday series you will discover new people with CP or just new insights that you previously missed.

Stay tuned for a set start date to the series. In the meantime you can check out my thoughts on the Yahoo! Contributor Network closing.

*Blogger’s Note- From December 2012 to December 2013 through Y! CN I also wrote select cerebral palsy related articles published at Yahoo! Health. Those articles will remain up at Yahoo! Health thus making them ineligible for the Throwback Thursday series. However, you will find the links below. Enjoy the reads!