#CPChatNow Recap- 03-14-2018

Much meaningful conversation occurred Wednesday, March 14th, 2018 during the live cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell and guess what? Correct! I am in recapping mode.

With the date March 14th, 3-14, the mood proved extra festive.

With the date March 14th, PiDay, the mood for #CPChatNow proved extra festive.March 14th aka Pi Day gave participants an additional reason to celebrate the Wednesday. Heather DeYoe shared she celebrated Pi Day by eating wild blueberry pie. Meanwhile the closest I came to pie involved a GIF I tweeted earlier in the day.

Although the dialogue began on a lighthearted note, topics soon turned serious. Shira sought comfort related to a frustrating family situation. This led me to pose a reflective question.

#CPChatNow participants reflect back on what they wished their parents did differently.My question asked what you wish or wished your parents did differently. Hailey Hughes expressed a desire for her father to understand some movements happen unconsciously. For example, motions like irregular arm positioning and walking flat-footed.

Elsewhere in the chatter, challenges long-time regular Hannah Pike continues facing led to a taboo subject surfacing.

Hannah and Zachary discuss the importance of talking about suicide. Hannah mentioned not seeing herself as a fighter because no other option exist. I commended her mindset, voicing an uncomfortable truth. Others might contemplate suicide as an alternative.

“It (suicide) only transfers the pain to your family and friends” Hannah reasoned. We agreed, recognizing the need to discuss suicide. Increased discussion could convince someone to reach out to find help.

Helping to lighten the chatter, I proposed a question designed to spark creative thinking.

Zachary and Shira discuss analogies that accurately describe living with cerebral palsy.Shira and I went back and forth answering my query, “If you were to use an analogy to describe to someone what living with cerebral palsy is like, what analogy would you use?” Responding, Shira likened cerebral palsy to a robot with a rusty central system. Her response triggered me to say a computer who only replies to 0s or 1s but not both binary code elements.

Do you want to add to the conversation with your own analogy? Go ahead! Answer for the week’s extend-the-conversation question, “What analogy would you use to describe living with cerebral palsy?” Leave your answer in the “Comments” section.

Also double check your calendars. Our next focus chat approaches fast!

Wednesday, March 28th, 2018 our very own Rachel Folly will lead a focus chat on the last year in CP. Our very own Rachel will lead the chat, focusing on the past year in CP. Reflection analyzing the positives and negatives related to the CP community from March 2017 to March 2018. Contact Rachel if you would like to see anything particular addressed Wednesday, March 28th.

Answer for the week's extend-the-conversation question, "What analogy would you use to describe living with cerebral palsy?"Prior to contacting Rachel though, remember to answer the week’s extend-the-conversation question. “What analogy would you use to describe living with cerebral palsy?” Respond in the “Comments” section below. Then countdown the hours to our next Twitter chat. #CPChatNow happens every Wednesday at 8pm ET.

Tweet you later,



#CPChatNow Recap- 3/7/2018

This week in #CPChatNow was a rambling week as always.  This is #CPChatNow co-host, Devin Axtman, taking you along on this week’s recap.

Rachel started us on a great note by continuing her tradition of greeting #CPChatNow participants with a greeting containing a characteristic of CP:

Rachel greeting her Hypertonic boos. I expressed appreciation for her greetings

I also want to encourage folks to check out the Paralympic coverage.  The Paralympics are the Olympics for athletes with disabilities and there is some awesome action going on:

Devin passed along the Paralympic schedule

Talk then turned to dreams.  Shira and Zach discussed the appearance, or lack thereof, of CP in their dreams.Zach and Shira talked about dreams. Zach said he has CP in his dreams while Shira does not.

Then, talk turned to pain and CP.  We talked about the difference between CP related pain and normal, everyday pain.

I talked about asking my doctor if pain was CP or normal pain. Zach and I agreed normal pain is pain unrelated to CP like pain after a workout versus CP pain like pain from weather impacts surrounding CP

Finally, talk turned to the all-too-familiar 1-10 pain scale and how CP can cause confusion of how to rate someone’s pain.

Zach and Shira talks about how CP changes our perception of pain.

Everyone agreed that CP causes us to live in the 1-3 pain range

Rachel and Zach agree they live in the 1-3 range of pain

Shira then asked whether someone is in pain if they really don’t notice it:

Shira and Zach continued talking about pain. Shira asked if someone is in pain if they don't notice it

ETC- How Does CP Impact Your Perception of PainThis brings us to our extend-the-conversation question: How does CP impact your perception of pain?

Please share your answers in the comments and join us every Wednesday at 8 PM ET on Twitter at #CPChatNow.




#CPChatNow Recap- 02-28-2018

Participants in our weekly cerebral palsy Twitter chat #CPChatNow discussed many topics Wednesday, February 28th, 2018. I am co-host Zachary Fenell, taking on the challenge to recap the lively discussion. Before recapping the many subjects visited, I wish to emphasize a reminder given during the chat.

#CPChatNow has a new shirt for sale, but the sale ENDS Wednesday, March 7th, 2017 at midnight ET.Currently we at #CPChatNow remain in shirt sale mode, with a shirt featuring a lime green #CPChatNow logo and a line underneath, also in lime green, reading “Established December 2013.” You can pick up the shirt in either navy, forest green, and/or sapphire. However, the sale ENDS Wednesday, March 7th, 2018 when the clock strikes midnight in the eastern time zone. So order today!

Proceeds from the sale will go to the non-profit foundation Keep On Keeping On (KOKO). KOKO assists those with severe disabilities through helping families fund physical therapy and other medical expenses. Help us help them make a difference by either purchasing a shirt or making a monetary donation.

Truly, the shirt sale concludes at a fitting time. After all, March marks Cerebral Palsy Awareness Month. Said topic left our community buzzing Wednesday, February 28th.

Participants in #CPChatNow express varying opinions about Cerebral Palsy Awareness Month.Rachel asked what people planned to do for National Cerebral Palsy Awareness Month, quipping that her leg and hand “have been making me all too aware of CP as of late.” I replied I work to raise CP awareness year round through my blog, memoir Off Balanced, and public speaking. Nonetheless I plan to become extra focused in March.

Meanwhile my co-host Devin shared some skepticism. He wants to see meaningful activity oppose to”mindless awareness with no real impact.” Those comments lead us to this week’s extend-the-conversation question. “How do you feel about Cerebral Palsy Awareness Month?” Answer in the “Comments” section.

The CP Awareness Month dialogue eventually transitioned, based off Rachel’s hand and leg quip.

Heather expresses empathy for Rachel's hand and leg issues, leading to a conversation about hand surgeries. Participant Heather DeYoe noted her birthday occurs during CP Awareness Month. She also empathized with the hand issues Rachel mentioned. Although Heather also indicated feeling relief from such issues after recent surgery. That left Wum Gin wondering the operation Heather underwent.

Elsewhere I discussed with longtime regular Linds a matter Linds blogged about recently, weird dreams.

Zachary and Linds discuss if their cerebral palsy is present in their dreams.Amidst the aforementioned post “My Weird Dream Lately…#1” Linds recalled a dream where she proved free from cerebral palsy. I found the fact Linds didn’t have CP in her dream fascinating and pondered what a dream expert might deem the significance. Offering her non-expert opinion, Linds suggested the fact could relate to not knowing she had something called CP until fourth grade.

Her speculation caused other participants to reflect back on growing up with CP. A direction evolving into chatter centering around math class!

#CPChatNow participants think back to their performances in math class.Rachel, Devin, and I went back and forth recalling our differing experiences in math class. Rachel described her math class as “sketchy.” I touted my good performance in the subject, at least until I reached pre-calculus. Devin possessed a relatively opposite experience. Geometry presenting the only math class leaving him to struggle.  Rachel added many with CP find difficulty with math.

Perchance the math keeps you hesitant towards purchasing a “#CPChatNow Established December 2013” shirt, I will crunch the numbers for you. Each shirt costs $24 and then another $4.99 in shipping, bringing the total to $28.99. The sale ends Wednesday, March 7th, 2018 at midnight ET, meaning upon this recap’s initial publication you hold less than 30 hours to order. Proceeds will go directly to the non-profit foundation Keep On Keeping On.

This week's extend-the-conversation question asks, "How do you feel about Cerebral Palsy Awareness Month?"With that one final plug done, one task lingers. For you to answer the extend-the-conversation question! Again, this week’s question asks “How do you feel about Cerebral Palsy Awareness Month?” Respond in the “Comments” below.

Until next time!



#CPChatNow Recap- 2-21-2018

Last Wednesday was a bustling week in #CPChatNow as always.  Members discussed Drunk History portraying the fight for disability rights and a discussion on members’ number one life priorities.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for this week’s recap.

First, we are very excited to announce #CPChatNow’s 2nd t-shirt sale benefiting the Keep On Keeping On Foundation.  Get your #CPChatNow Community Established December 2013 shirt now!

Tweet announcing #CPChatNow's t shirt sale

Next, Rachel and I talked about Drunk History portraying the fight by the disability community to get the Rehabilitation Act 504 standards codified into law. Past #CPChatNow participant, Ajani “AJ” Murray, was an actor in the video! (Warning: the link contains adult language)

Rachel and I discussing our mutual love for Drunk History's segment on the section 504 regulations

Next, members talked about their number one priority with Zach, myself, and Heather chiming in:

Zach asks about member's number 1 priorities. He said his is taking care of himself physically, I said being happy, and Heather mentioned dreading going to work after a few days out and wondering what her coworkers will think. Zach asks Heather about she handles this

Heather and Zach both tweeted about how the only thing that should matter for a boss is job performance:

Heather tweeted about how she normally only worries about what she can control. Zach tweeted that the only thing that should matter from a boss is opinions on job performance

Finally, Shira and Zach discussed Shira’s number 1 priority, survival:

Shira responded her number one priority is survival. Zach asked a follow up question about what makes it easiest for her to survive

Shira tweeted that she survives by leaning on her support system. Zach agreed this is critical.

Shira tweeted that leaning on others and dreams and determination helps. Zach and Shira agreed that

This brings us to our extend-the-conversation question.  I will add to Zach’s great question: What is your number 1 priority in life and how does CP factor into your priority (if at all)?

Be sure to join us every Wednesday at 8 PM Eastern on Twitter at #CPChatNow

Tweet you later!


A white background with Extend-The-Conversation in black and What is your number 1 priority in life and how does CP factor into your priority (if at all)? on the bottom. The multicolored #CPChatNow logo is in the bottom lefthand corner. There is a pointer finger with a red ball with a #1 in white

#CPChatNow Recap- 02-14-2018

February 2018 coincidentally saw Valentine’s Day and the weekly cerebral palsy Twitter chat #CPChatNow fall on the same day. I am co-host Zachary Fenell, ready to recap the dialogue from February 14th. Participants’ attitudes towards Valentine’s Day emerged early in the chat.

#CPChatNow community members share a disinterest in Valentine's Day.Participants Jen and Rachel‘s responses to my Valentine’s Day greeting showed a disapproval for the holiday. Jen wished a “Happy Single made up holiday.” Meanwhile Rachel pulled a Scrooge, saying “Bah humbug!”

Chatter remained Valentine’s Day related via participants sharing their experiences with online dating. Unfortunately, the tales skewed more negative than positive. Disclosing your disability proving a key topic. However, I will avoid specifics since the recap rules deem “Tweets focus on sensitive life events, such as relationship matters” not recap appropriate.

Eventually discourse moved beyond a love theme. I announced the date for our February 2018 Google Hangout.

#CPChatNow will hold their monthly Google Hangout for February 2018 Thursday, February 22nd. Google Hangouts offer the chance for us to talk face to face and share stories harder to tell with Twitter’s character limits. Distributing the Hangout link happens privately to ensure a safe environment. Please contact either my co-hosts Jorge Otezia, Devin Axtman, or myself by Twitter or through the #CPChatNow Facebook fan page to inquire about joining the Hangout.

Mentioning Devin, he added input to a question I asked.

Devin and Zachary discuss falling.Devin answered my question, “How often do you fall?” He said he falls maybe once a month. I explained the reason I asked, feedback I received on a recent Youtube video discussing falls.

The user commented he never falls because he catches himself. Devin and I both found the ability to catch yourself all the time impressive. Long-time community member Jocelyn also added to the falling talk.

Jocelyn answers the question how often she falls.Jocelyn possessed a more precise answer to the question “How often do you fall?” She noted tracking how often she falls and trips. Within the information she logs she includes the situation’s circumstances. Probably very helpful data!

Answer for the week's extend-the-conversation question, "How often do you fall?"Your turn now. Answer for the week’s extend-the-conversation question, “How often  do you fall?” Estimate if you do not know the exact amount. Leave your answer by commenting below.

Until next time,


#CPChatNow Recap- 2-7-2018

This past week in #CPChatNow was buzzing as always.  Members discussed positive and negative things that had happened in the past week, a community pulling together to build an accessible playground, and a tattoo they would get to represent their CP.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow started with Co-host, Zach Fenell, asking members what positive things had happened for them this week. I shared getting back into the swing of things at the gym and Hannah reported texting friends and getting a new shirt in the mail:

Zach asked members what positive things had happened. I shared getting back to the gym and Hannah stated she recently got a new shirt

Zach shared the exciting (and positive!) news that he is starting to write a new book on his journey to becoming a marathoner:

Zach announcing he is starting a book on his journey to becoming a marathoner

Next, talk turned to a community raising money to build an accessible playground. Zach shared that he hoped the other kids asked the kids using wheelchairs’ permission first before helping them:

Zach and Devin discussing an accessible playground and the necessity of asking permission first

Zach and I agreed that inclusive playgrounds should be the standard:

Zach and I discussing that inclusive playgrounds should be the standard

Next, talk turned to tattoos members would get to represent cerebral palsy.  Members replied with various words and themes:

Members discussing what tattoos they would get to represent their CP

Zach referenced Southpark from Seth's tweet, Blemi tweeted Shackles, and Zach tweeted a tank

This brings us to our extend-the-conversation question: What tattoo would you get to represent your experience with CP?  Please share you answers in the comments!

Tweet you later!


Extend-The-Conversation is in black, a green butterfly with cerebral palsy written on a green ribbon, and the Extend-The-Conversation question: What tattoo would you get to represent your experience with CP? along with the multi-colored #CPChatNow logo in the bottom left hand corner

#CPChatNow Recap- 01-31-2018

An abbreviated #CPChatNow Twitter chat happened Wednesday, January 31st, 2018. I am co-host Zachary Fenell here to provide you the details via your weekly recap. Around our usual start time 8pm ET, my co-host Devin announced he would miss the chat.

Devin checks in to tell the #CPChatNow community he cannot make the night's chat.Trouble since I found myself with Internet connection problems. Without seeing Devin’s tweet I reached out to longtime regular Hannah Pike to give participants an update.

Longtime #CPChatNow regular Hannah Pike gives a chat update for Zachary.Thankfully a change in status occurred a little before 9pm ET. Equipped with a re-established Internet connection, I entered the #CPChatNow thread. Soon the dialogue started flowing like any other Wednesday from the past four-plus years.

Issues recently experienced by longtime regular Blemi led to conversation about ableism.

#CPChatNow participants discuss ableism and discrimination.While Blemi gave an update on her parking situation, Hannah mentioned ableist tendencies. I replied, noting too many people do not realize their ableist behavior. As the chatter continued I theorized a big problem involves the tendency to grow defensive when discussing discrimination. People take words personally oppose to staying open-minded.

Later in the chat participants rallied together again to supply support to another. Regular Shira Sadiky looked to our community for advice on transitioning to college.

#CPChatNow participants discuss living on-campus and the difference between single, double, and medical single rooms.I asked Shira what her roommate situation will end up like. Personally I always paid the double rate for a room in college although I lived in a single. Devin supplied greater perspective, explaining the difference between doubles, singles, and medical singles.

Towards the chat’s end I raised a question asked to me the day prior.

Zachary asks #CPChatNow participants about their rock, what keeps them moving during tough times.The question “What’s your rock?” a middle school teacher asked me following my presentation at a school. Your rock meaning what keeps you moving forward during hard times. Devin, who ended up making the chat at the end after all, said friends and family. That answer proved common.

#CPChatNow participants name their "rocks."Blemi called her significant other her rock. Meanwhile Jen said her mother gives her strength during tough times. Your turn! Answer for the week’s extend-the-conversation question,

Answer for the week's extend-the-conversation question, "What is your rock? So what keeps you going during tough times?"“What is your rock? What keeps you going during tough times?”

Respond in the “Comments” section below. Then join us Wednesday evening at 8pm ET for our weekly Twitter chat!

Tweet you soon,