#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

 

 

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#CPChatNow Recap- 4-25-2018

The past week in #CPChatNow was humming as always.  I’m #CPChatNow co-host, Devin Axtman, taking you along on this week’s recap.

We start the recap with some good news from Timmy!

Timmy is his school's outstanding neuroscience student

Next, talk turned to a familiar topic with CP, falls.  Rachel reported she had a fall recently and the importance of not falling on her right side.  It is a fact of life with CP that you learn how to fall.

Rachel's left side is banged up from a fall that could have been worse. Wum Gin asked if Rachel ever breaks a fall with her left side. Rachel replies that is a bad idea due to no reflexes

Next, talk turned to sick days and benefits (or lack-thereof at work) along with the difficulties of working for a small business.

Rachel earned a sick day that she might use next week. Zach replied his position does not have benefits

Zach and Rachel continued tweeting about sick days. Rachel tweeted she's not covered under ADA due to her employer being a small business

Finally, talk turned to taking the staircase at events like sporting events and concerts.  The consensus was to only get up if necessary and not to go alone:

Shira tweeted about going the theater and dealing with a tricky staircase. Rachel agreed she hates getting up

Zach agreeing that he does not like going to stadiums by himself but he did go to a game at Wrigley field by himself

This brings us to our extend-the-conversation Question: Do you avoid doing things in public alone due to your CP?

The Extend-The-Conversation question: A red background with a white #CPChatNow logo. A picture of stadium stairs without a railing with Do you avoid doing things in public alone due to your CP? on the bottom

Share your answers in the comments.  Tweet you later!

-Devin

#CPChatNow Recap- 4-11-2018

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!

-DevinA 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- 3-28-2018

#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- 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.

-Devin

 

 

#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- 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!

-Devin

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