#CPChatNow Hits One Year Milestone

#CPChatNow

Graphic (put together by Sarah Wambach) used to promote the first #CPChatNow

This past week the live cerebral palsy Twitter chat #CPChatNow reached the one year milestone! Yes, one year passed since John W. Quinn, Handicap This’ Tim Wambach, and I hosted the very first live #CPChatNow discussion Tuesday, December 3rd, 2013.

As public figures in the cerebral palsy community we welcomed people with CP, their family members, caregivers, and whoever else to come ask us questions about CP. Demands for another live #CPChatNow chat rose leading #CPChatNow to quickly turn into a weekly deal.

Each week new and familiar faces alike joined in. A few months later the demographic shifted to mostly people with CP evolving #CPChatNow into a support group. Every Wednesday at 8pm EST we took to Twitter to announce exciting news, vent our frustrations, and bond over experiences others with CP could best understand.

The connections we made transcended Twitter and the Internet. Two young women with CP who actually attended the same elementary school (albeit grades apart) re-connected due to #CPChatNow. Through their travels Handicap This met different #CPChatNow regulars in-person.

So far I personally enjoyed meeting in-person Blake, a young man with much potential. 2015 should see me getting the chance to meet more #CPChatNow kin in-person. No matter what 2015 brings though, the aforementioned demonstrates the real, meaningful connections made by the live chat.

Now the year also saw other commitments leave my #CPChatNow co-hosts John and Tim to step back from the weekly chat. Upcoming events however should stir new excitement within the live chat’s community.

Like the #CPChatNow Facebook page to stay informed. Join the conversation on Twitter every Wednesday starting at 8pm EST. Do so with these three easy steps listed in the following graphic.

#CPChatNow Instructions

#CPChatNow takes place every Wednesday at 8pm EST.

FYI we do still welcome participation from everyone. In other words cerebral palsy parents, caregivers, and curious strangers. Come join us! You might just find our feedback helpful.

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.

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!

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!

 

 

Concert Going with Cerebral Palsy

A couple weeks back during the weekly live Twitter chat #CPChatNow (Wednesdays 8pm EST), I asked a question “How does your body hold up during concerts?” The question seemed fitting seeing how concert going feels like a summertime tradition. Below you’ll find select responses.

Answers to how does your body hold up at concerts?Answer to how does your body hold up during concerts

Interestingly enough I find parallels to my concert experiences within Blemi, Hannah, and Kate’s feedback. Those similarities vary largely based on the concert venue. Last year I saw Tim McGraw play at Blossom Music Center. My friends and I bought lawn seat tickets. Knowing Blossom’s lawn seats lay on a steep grassy hill I decided to bring my cane. I wanted to enjoy myself, not worry about my balance.

Lee Brice

Lee Brice performing at House of Blues Cleveland.

Then in November I saw Lee Brice perform at House of Blues Cleveland. Brice sold out the venue, creating a packed house. Standing for so long without a wall or anything to lean on also left me “paying for it” the next day. Heck, I felt the impact walking back to the car. My entire lower half ached.

Another challenge the crowded House of Blues Cleveland presented occurred during the show. Staying balanced becomes difficult amidst a shoulder to shoulder crammed environment. People accidentally knock into you. If not for friends to grab when needed, I would’ve fallen I’m certain.

Ironically despite the venue proving the more difficult one physically, I actually preferred House of Blues. You experience the artist in a closer proximity. Just look at the Lee Brice picture I snapped for evidence. I could never get such a shot with my current camera from Blossom’s lawn seats.

Obviously buying tickets closer to Blossom’s stage exists as an option, but one my budget dislikes. Rather than diving into the financial factors involved in concert going, I will digress. Let us concentrate on the cerebral palsy related variables.

You now know my insights. Time for others with CP to share, how does cerebral palsy influence your concert going? Do your experiences compare to mind? Or, perhaps like Susanne you avoid concerts due to obstructed views. Do tell by commenting below.

Social Media Connects the Cerebral Palsy Community

Social media really does build community, a fact I’ll happily verify. Prior to writing professionally about cerebral palsy (CP), I knew no one else with the disability. Certainly others somewhere lived with CP but their existences remained abstract to my world. Social media changed that.

Meeting Blake

I met Blake at Union Station in Washington DC.

Last Friday I enjoyed the pleasure to meeting in-person a young man with a bright future, Blake. We initially connected thanks to the live weekly cerebral palsy Twitter chat #CPChatNow. Next month Blake will intern with Senator Mark Warner (D-VA). Considering this I figured Blake must live somewhere close to the DC area.

Back in February my buddy Pete and I planned a road trip to DC for May to visit our good friend Rob and his wife Kelly. You may recall Pete and Rob from my teenage memoir Off Balanced (available on the Kindle, Nook, and i-Pad via the free Kindle app). Once I received approval from my friends I went about arranging meeting Blake.

Blake’s eagerness to meet me in-person proved flattering. Initial schedules conflicted. However, Blake adjusted his to make getting together work. Thanks to his patience and flexibility we enjoyed insightful conversation at Union Station. Two individuals with cerebral palsy sat across from each other engaged in dialogue due to Twitter.

Meeting Blake only represents the latest example where social media connected me to others within the CP community. You might recall in January I met motivational speaker and author (Someone Like Me) John W. Quinn in the flesh. My first contact with John back in early 2011 came via Twitter.

Meanwhile Twitter and Facebook fostered my connection with Tim Wambach and Handicap This, a connection originally started by email. Knowing the Handicap This crew, John W. Quinn, and Blake all enrich my life someway. On a less me-centric note our connections also demonstrate social media can meaningfully connect the cerebral palsy community.

Do you want social media to better connect you with the CP community? The live cerebral palsy Twitter chat #CPChatNow every Wednesday at 8pm EST offers an optimal starting point. Please join us by using #CPChatNow.