#CPChatNow Recap- 4-10-2018

Posted on April 17, 2018 by devinaxtman

This past week in #CPChatNow was busy as always. Members talked about birthdays, lost family members, and writing books. This is #CPChatNow Co-Host, Devin Axtman, taking you along for this week’s recap.

First, we have to wish a happy birthday to Shira! She talked about her feelings upon turning 17:

Shira discussing her feelings upon turning 17, sometimes feeling old, sometimes feeling like a young girl

Talk then turned a memorial service at my university and Zach shared it was his late aunt’s birthday:

Zach pointing out that today was his late aunt's 63 birthday. Shira stated it was OK to remember loved ones. Zach shared his aunt was a pediatric nurse that helped his family

Zach and I discussed how his aunt’s occupation as a pediatric nurse helped his family with his CP diagnosis:

Zach and I discussed how his aunt's occupation as a pediatric nurse helped his family with his CP diagnosis

Finally, Zach talked about going to author events in preparation for writing his next book, a story on his journey from not participating in PE to completing a marathon this past year:

Zach and Shira talking about Zach going to author events in preparation for his new book on his journey to being a marathoner

This bring us to our Extend-The-Conversation Question: If you wrote a book about your life, what would be your topic? Please share your answers in the comments!

Tweet you later!

-Devin A notebook on a brown table with a pen. Extend-The-Conversation Question and If you wrote a book about your life, what would be the topic? are in white above the notebook. The multicolored #CPChatNow logo is in the bottom lefthand corner

#CPChatNow Recap- 04-04-2018

Posted on April 10, 2018 by zacharyfenell

Assorted subjects came and went during the live cerebral palsy Twitter chat #CPChatNow Wednesday, April 4th, 2018. I am co-host Zachary Fenell here to play reporter and give you your weekly recap. A challenge given the various topics discussed!

Early on the chatter contained a downer tone. Participants shared difficult life situations they currently face. Looking to turn the dialogue upbeat, I asked about positive happenings, no matter how small!

Shira expressed feeling happy despite some physical health issues. Meanwhile the Texas Rangers winning the night before gave Jen joy. Sports became a re-occurring topic when I tweeted out a recent news story, “Watonsville Student-Athlete with Cerebral Palsy Hopes to Inspire, Bring Change.”

My co-host Devin also enjoyed the article. He and I noted what resonated with our respective selves. Devin liked how Carlos seemed “like he’s one of the guys.” Personally, the coach working with Carlos’ psychologist and physical therapist impressed me.

Speaking about physical therapists, physical therapy arose as a conversation generator.

Chat regular Chris made mention her neurologist ordered “physical torture.” Physical torture meaning physical therapy (PT). I recalled other participants vocalizing similar sentiments towards PT in past chats.

Want to add in your opinion? You can by answering this week’s extend-the-conversation question. “How would you describe physical therapy?” Leave your response in the “Comments” section.

Also worth mentioning from our chat Wednesday, April 4th, we announced the date for our April 2018 Google Hangout.

If you like joining the monthly video chat, mark your calendars for Thursday, April 26th. To maintain a safe environment, we do not send out the Hangout link publicly. To get added to the invite list, contact Devin or myself. Before reaching out though, remember to answer the week’s extend-the-conversation question.

“How would you describe physical therapy?”

Respond via commenting below.

Until next time!

-Zachary

#CPChatNow Recap- 3-28-2018

Posted on April 3, 2018 by devinaxtman

#CPChatNow was especially fantastic last week! Longtime member, Rachel Folly, led a focus chat on the past year in members’ lives and developments for adults with CP.

Rachel introducing the chat topic

For her first question, Rachel asked if members had any CP related goals for the year and how they went. Zach and Linds talked about blogging: Zach and Linds talking about their goals of blogging. Linds stated she does not have a specific posting goal

Zach said he has accomplished a goal of increasing his reverse crunches:

Zach tweeting about increasing his reverse crunches from 37 to 43

Rachel then asked members about how their CP has changed as they have aged and what they are doing in response. Linds mentioned exercising by doing things like Zumba:

Rachel asked members if their CP had changed and what they were doing about it. Linds mentioned Zumba

Zach and I talked about increased back pain. Zach combats this by strategically placed pillows:

Zach and I talked about back pain. Zach said he combats back pain with pillows

Jen mentioned that she experiences pain, but sometimes feels guilty because it is moderate. Rachel tweeted that everyone’s CP is unique.

Jen worried about her moderate CP pain and Rachel tweeted that everyone's CP experience is different

The next question revolved around what members saw in the media about adults with CP in the past year and how it impacted them. Members largely answered with the story of an adult with CP being assaulted at a gas station. Additionally stories mentioning Zach and another person with CP completing a marathon arose.

Rachel asked about stories in the media about adults with CP. Members mainly shared stories about the adult with CP who was attacked at a gas station Rachel then asked what members would like to see change regarding CP next year. Members talked about a need for medical professionals to learn how to better manage CP:

Rachel asking what members want to see change with CP. Jen mentioned better medical management

Linds tweeted about wanting to continue to educate others that people with CP are first and foremost human, like anyone else.

Linds tweeted she will continue her education of normal being a myth

Rachel’s final question asked what members do to stay upbeat and focused on the long term. Linds stated she will do what she wants despite her health conditions:

Rachel asked what members do to stay upbeat. Linds stated she will continue to do what she wants to experience

Yasmin talked about the power of music and other activities in her life:

Yasmin tweeted about taking it day by day and importance of music, reading, and other activities

This brings us to our extend-the-conversation question. As we move past CP Awareness Month, what are your goals for the upcoming year in regards to CP? Extend the conversation graphic. Goal in blue letters with the O a bullseye. The Extend-The-Conversation Question As we move past CP Awareness Month, what are your goals for the upcoming year in regards to CP? is below the graphic Please share your answers in the comments!

Thanks for following along and tweet you later!

-Devin

#CPChatNow Recap- 03-14-2018

Posted on March 20, 2018 by zacharyfenell

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.

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.

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 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.

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!

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.

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,

-Zachary

#CPChatNow Recap- 3/7/2018

Posted on March 11, 2018 by devinaxtman

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 Pain This 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.

-Devin

#CPChatNow Recap- 02-28-2018

Posted on March 6, 2018 by zacharyfenell

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.

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.

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.

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.

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.

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!

-Zachary

#CPChatNow Recap- 2-21-2018

Posted on February 27, 2018 by devinaxtman

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!

-Devin

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

Online community for those with cerebral palsy!