#CPChatNow Recap- 7/3/2018

There was a bit of a change to #CPChatNow this week.  The chat was moved to Tuesday to accommodate the 4th of July.  However, the chat was still busy as members talked about how often they think about CP, burning calories, and doing chores.  This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Talk started with whether members thought about their CP regularly.

Zach and Chris talked about if CP is constantly on their minds. They both agreed they think about it, but not overtly

Zach and Rachel talked about the impact (or lack-thereof) of CP on burning calories:

Rachel and Zach talked about whether CP impacted their calories burned, particularly when it came to posture

Next, talk turned to chores that are more difficult because of CP.  Members quickly agreed that making the bed can be very difficult with CP:

Jeni and Zach talking about the difficulty of making the bed

Finally, talk turned to the difficulty of ironing with CP:

Zach and Wum talked about the difficulty of ironing and folding with CP

Zach asked how often members ironed. Devin and Chris talked about their infrequency of ironing

This brings us to our Extend-The-Conversation Question: What is the most difficult chore for you with CP?

Share your answers in the comments and join us tonight at 8 Eastern!

-Devin

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#CPChatNow Recap 6-6-2018

#CPChatNow was chipper this past week as members talked about things such as teaching their friends, what they would like their legacy to be, and whether they prefer moving or sitting activities.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, #CPChatNow would like to note the passing of someone who meant a lot to many in the cerebral palsy community, Dr. Karen Pape.  Dr. Pape was a clinical neuroscientist and author. You can find her TED Talk here. She also did a focus chat for #CPChatNow.  You can find the recap for the focus chat here.

Zach tweeting about Dr Pape's death on June 2nd

Next, Amanda shared a story of a friend helping a man using a walker leave a restaurant.  This is a great example of knowledge of disability expanding knowledge and empathy.

Amanda shared a story of a friend helping a man using a walker leave a restaurant.  She shared a story of the friend saying knowing Amanda has helped expand his knowledge.

Legacy soon became an emerging topic, sparked by Dr. Pape’s death mentioned earlier. Community members discussed the legacies they want to leave:

Members discussed the legacy they hoped to leave. Zach and I shared our thoughts. Rachel cautioned about doing too much for others

Continuing the widespread dialogue, members talked about whether they prefer activities that involve movement or activities that involve sitting.  The consensus was movement, but that a balance was necessary to prevent overwhelming fatigue.  Hot showers were a favorite as well.

Rachel prefer movement oriented activities where her muscles are engaged in active and passive stretch like yoga or taking a hot shower. Zach agreed on liking hot showers

Chris agreed with Zach and Rachel on need for moving activities, but talked about the need for a balance.

This brings us to our extend-the-conversation question: What are your go to activities to get moving?  Please share your answers in the comments!

Extend-The-Conversation Question in white at the top. What are your go to activities to get moving? in the middle with the #CPChatNow white logo. A person is standing in the middle of trees with their arm up

Tweet you later!

-Devin

 

 

 

#CPChatNow Recap- 5-23-2018

This past week in #CPChatNow was bustling as always.  Members talked about recent hikes, riding bikes, and physical therapy being fun.  This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I wanted to highlight a tweet from a member about something that occurred outside of the regular #CPChatNow window of 8-10pm eastern time each Wednesday.  Regular member, Timmy, shared a photo of a weekend hike:

A picture of Timmy standing by the Mount Everett summit sign

Timmy showed that #CPChatNow and people with CP are doing things all of the time!

Riding bikes was a common theme in this week’s chat after Zach shared a story about a man excelling at adaptive cycling.  Zach and Linds chatted about their history of riding bikes:

Zach and Linds talked about bike riding. Zach said he did not have the core strength to get beyond training wheels. Linds tweeted she used to ride and sometimes fell off, but has been unable to due to health reasons and no time to recover

The bike conversation went in another direction as Zach and I talked about how our physical therapists thought of fun ways to get us involved in physical therapy (PT):

Zach and I tweeted about sports being a part of physical therapy. I tweeted sports were a big part of therapy and zach expressed that he wished sports was a bigger part of his therapy

I tweeted a milestone in physical therapy was running around the bases. Zach recalled getting in catcher position to catch bean bags and the challenge of keeping his balance

This brings us to our extend-the-conversation question, “What did your therapists do to keep you interested in therapy?”

A picture of a baseball stadium in the background. Extend-The-Conversation Question in white with the extend-the-conversation question at the top of the picture. The white #CPChatNow logo at the bottom

Please share your answers in the comments and join us each Wednesday at 8pm Eastern on Twitter at #CPChatNow.

#CPChatNow Recap- 5-9-2018

This past week in #CPChatNow was jumping as always.  Members talked about being ambidextrous, learning to fall, and rebelling against CP.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

Zach and Grace talked about being ambidextrous and whether that translated to falling to one side or the other:

Zach and Grace talking about whether being ambidextrous translated to falling more on one side. Grace tweeted she is, but tends to fall on her right side

Members then talked about learning to fall.  Stacey expressed surprise that was a thing, but many members such as Zach and Hannah tweeted about learning to fall:

Zach and Stacey tweeted about learning to fall. Stacey said she had never learned to fall, but she falls on her stronger side.

Zach and Hannah tweeted about different techniques regarding learning to fall in PT:

Zach tweets about learning to fall on his dominant side. Hannah tweets she learned ways to catch herself. Zach tweeted he went to private PT

Zach, Hannah, and I tweeted about having private PT and our parents sweating over payment details:

Zach, Hannah, and I tweet about having private PT when younger and not thinking about the payment details

Next, talk turned to an interesting question Zach had.  He asked members about the first time they could remember rebelling against their CP.

Zach asked about the first time members rebelled against their CP. Zach tweets about not leaving classes. Jen tweeted about grabbing things with her claw rather than asking for help

Hannah tweeted about moving to Nashville and Zach tweeted about his parents being unsure about him competing in his first marathon:

Hannah tweets about rebelling by moving to Nashville. Zach tweets about doing the marathon and reassuring his parents

This brings us to our Extend-The-Conversation question.  Zach had all of the good questions this week, so I will ask his question again for those who couldn’t participate on Twitter: “What was the first decision you made to rebel against people’s concerns over your CP?”  Share you answers and the results in the comments

Extend-The-Conversation-Question in black text at top. A grey person standing with hand up to his chin as if thinking with 3 red arrows going right, straight, and left. What was the first decision you made to rebel against people's concerns over your CP?What was the first decision you made to rebel against people's concerns over your CP? What was the first decision you made to rebel against people's concerns over your CP? is below in black text. Multicolor #CPChatNow logo in left hand corner

 

 

#CPChatNow Recap- 04-18-2018

#CPChatNow’s communal atmosphere remained on full display Wednesday, April 18th, 2018 during the weekly Twitter chat. Familiar faces returning after lengthy absences helped to establish the night’s tone. Here to tell you all about the evening, I am co-host Zachary Fenell.

Those aforementioned familiar faces referenced included long-time participant Hannah Pike and always busy co-host Jorge Oteiza. Other participants warmly greeted the two.

#CPChatNow participants warmly welcome back Hannah and Jorge.Co-host Devin utilized a wrestling GIF to welcome Hannah and Jorge. Such a GIF demonstrates another aspect to our friendly community. Perhaps an element to discuss in a future recap! For now, let us catch up with Hannah and Jorge.

Some serious health issues kept Hannah away from #CPChatNow. Issues she recently detailed while blogging.

Hannah gives #CPChatNow an update on her health.Despite personally already knowing Hannah’s situation, reading her blog post still made me shudder. The seriousness that comes along brain surgery proving undeniable. Take a look and read yourself, “The Setbacks Leading to the Comeback.”

Thankfully the reasoning behind Jorge’s absence involves a lot less dire circumstances. College and work continues to keep him pre-occupied. As Jorge explained, an earlier shift allowed him to make the week’s chat.

Elusive #CPChatNow co-host Jorge Oteiza makes his #CPChatNow return.Just like Hannah, participants excitedly met Jorge. Specifically, Shira Sadiky recounted how Jorge helped her feel comfortable when she first joined #CPChatNow a couple years ago. Comfort definitely stands important towards building a strong community.

What other characteristics do you also find valuable in a community? Answer for the week’s extend-the-conversation question, “What characteristics make for a strong community?” Respond in the “Comments” section.

Maintaining the communal theme, remember #CPChatNow’s forthcoming April 2018 Google Hangout.

#CPChatNow will hold their April 2018 Google Hangout Thursday, April 26th. The monthly Hangout allows our community to chat using a more open platform. No character limits! Plus video chatting adds communication factors like tone of voice and facial expressions, enhancing the dialogue! Due to privacy reasons, the link to the Hangout does not go out publicly. Perchance you want to join us, message the #CPChatNow Facebook fan page to let us know.

This week's extend-the-conversation question asks, "What characteristics make for a strong community?"Before visiting our Facebook page though, answer the week’s extend-the-conversation question! “What characteristics make for a strong community?” Answer by commenting below! I eagerly await seeing your replies.

Until next time,

-Zachary

#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!

-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

#CPChatNow Recap- 12/20/2017

The week before Christmas was an eventful week as always in #CPChatNow.  Members talked about returning to their former clinic, the character of Tiny Tim, their grandparents, and more. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

The chat started with #CPChatNow Co-Host, Jorge, checking in from a vacation with his family:

Blake checking from a vacation with his family. His tweet includes a picture of a beach at sunset

Zach also talked about recently seeing A Christmas Carol and being disappointed with the Tiny Tim character:

Zach lamenting that Tiny Tim in a Christmas Carol is just a plot device and a turning point for Scrooge

Wum Gin talked about going back to her old clinic and memories of her gait analysis. We shared memories of the pain from the markers for the gait analysis being removed from our legs:

Wum Gin discussing returning to her original clinic. We discussed memories of our gait analysis and the pain the removal of the markers caused

 

With the holidays, talk turned to family, and specifically grandparents.  Blemi started the conversation by talking about her 95-year-old grandfather who has been a huge influence in her life and how he met her grandmother in a World War II internment camp:

Blemi discussing her grandfather's active lifestyle and her grandparents meeting in the internment camp

Finally, Zach also discussed a memorable moment where he scooped ice cream for his grandparents. Zach shared his ability to perform tasks is often overlooked:

Zach talking about a cherished moment when he scooped ice cream for his grandparents and he discussed how he is often overlooked when family asked for help

 

This brings us to our extend-the-conversation question: What do you wish others knew about your strengths while living with CP?

Tweet you later!

-DevinAn orange background with white text. The top has Extend-The-Conversation Question. Strength is in the middle in all caps. What do you wish others knew about your strengths while living with CP? is in white on the bottom with the #CPChatNow logo in white on the bottom