#CPChatNow Recap- 6/19/2019

This past week in #CPChatNow was hopping as always. Members talked about various topics like having multiple disabilities, horror movies and CP, and their personal analogy for the CP community. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, two long time members of the #CPChatNow community finally met each other in-person with Hannah Pike and my other co-host, Zachary Fenell, meeting:

Pictures of zach and hannah. zach and hannah are holding a homemade #cpchatnow poster, zach is sitting with hannah's dog levi, and there is a picture of Hannah's #cpchatnow sign

Shira asked if having CP made you more likely to have multiple disabilities:

Shira asked if having CP made you more likely to have multiple disabilities:

Members chimed in that they had multiple diagnoses with CP and that other symptoms from CP might lead to a diagnosis:

Heather reports she has multiple diagnoses. I point out symptoms from CP can cause other issues

Next, members talked about the impacts from CP and their startle reflex on watching horror movies:

zach asked if startle reflex impacted horror movies. Hannah tweeted about liking Devil's knot and needing to watch a quiet place, grace lapointe said her startle reflex impacts her, but she loved get out. Blemi tweeted they are not her type of movie.
members continue to talk about issues with horror movies and startle reflex. members also talked cellphones

Finally, Zach asked if members had an analogy for the Cerebral Palsy community:

zach asks what analogy people would use for the cerebral palsy communtiy
zach says the CP community is like a music festival- there is a common bond in attendance (CP), but everyone has different experiences (seeing different bands)

Seth chimed in with his own analogy borrowing from a Lady Gaga song:

seth opines the cp community is closest to the LGBTQ community- born this way

This brings us to our Extend-The-Conversation Question: What analogy would you use for the CP community? Please share your answers in the comments!

Join us every Wednesday at 8 Eastern at #CPChatNow on Twitter.

Thanks for reading!

-Devin

#CPChatNow Recap- 9-20-2017

Last week was an eventful week in #CPChatNow as always!  Members discussed searching for their medical records, the return of the TV show Speechless, their high school accommodations, and the importance of self-advocacy.  This is #CPChatNow Co-Host, Devin Axtman taking you along for the ride on this week’s recap.  Buckle up!

The chat started out on a light note as Mindy discussed the difficulty of finding medical records and Blemi shared in the frustration:

Mindy expressed frustration she can't find her medical records. Blemi stated she found her's with a chocolate stain

Next, the chat turned to #CPChatNow’s favorite TV show, Speechless! Speechless returns Wednesday at 8:30 Eastern! Zach shared a fantastic article covering the show and we discussed the director of Speechless saying a goal was to lose the shackles of the “dreaded disability factor”:

Zach and Devin discussing the return of speechless and the director's thoughts

Talk then turned to high school accommodations and how much members were involved in their own accommodations. Blemi mentioned that her small town in Canada just did the bare minimum:

Blemi and Zach discussing high school accommodations in Canada. Blemi said there is no national standard and her small town did the bare minimum

Blemi reported that her school just exempted her from PE and allowed her to simply write papers.  Simply excusing something rather than accommodating for disability is definitely not the best response:

Blemi reported she wrote papers instead of doing PE

Christine and Zach discussed their evolution from being mad at being included in IEP meetings to taking self-advocacy as a point of pride:

Christine and Zach discussing their evolution from being shy to feeling prideful regarding their disability

Omens also discussed the occasional difficulties of self-advocacy, but rejoiced in the good moments when you find an ally that helps you like their stat teacher:

Omens discusses difficulties with self-advocacy and her stat teacher being her ally

This brings us to our Extend-The-Conversation Question: What memorable stories do you have surrounding CP and self-advocacy?  Please share your answer in the comments!

Tweet you later!

Devin An oranage cat in the lower left hand corner with a shadow of a lion. There is white text saying Extend-The-Convrsation and What memorable stories do you have surrounding CP?

#CPChatNow Recap- 8-23-17

#CPChatNow was bustling as always this past week as members discussed moving, marathon training, and perceptions of disability.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s ride.

The chat included some members sharing some exciting news in the disability world.  I shared a cool story from Canada about a woman with CP repelling down a skyscraper to raise money for charity:

Next, Dave shared some news about an exoskeleton helping people with CP with movement.  Technology continues to offer exciting advancements for people with disabilities!

Dave tweeting about a freaking amazing exoskeleton. He shares that working out power will be a gamechanger

Jen shared this was the last #CPChatNow in the house she grew up in and her feelings surrounding the move.

Jen discussing her upcoming move and the bittersweet feelings surrounding it

Next Zach talked about how his October 8th marathon was drawing closer and the organizers have agreed to allow him to have an early start as an accommodation for his CP:

Zach discussing his October 8th marathon and the 31 training days to go. He states he has 31 training days left

Finally, talk turned to the perception of disability in society.  This was started by Zach as he stated that he did not like to take off his shoes during gym class because people would ask him about his DAFOs.  Elizabeth jumped in to the discussion with a question that spurred more discussion about the perception of disability in society largely being something that is to be ashamed of.

A discussion of gym class, DAFOs, adulthood, and disability perceptions in society

For our Extend-The-Conversation question this week, I will use the theme of changing perceptions in the transition to adulthood.  What personal perceptions about disability have changed as you entered adulthood?

Tweet you later!

Devin

A sunset with a desert formation on the horizon. The Extend-The-Conversation Question of What Personal Perceptions of Disability Have Changed As You Entered Adulthood? A white #CPChatNow logo on the bottom

#CPChatNow Recap- 5-10-2017

This week’s #CPChatNow Twitter chat was a ride ranging conversation on current events in community member’s lives and topics unique to the disability community.  This is your Interim Co-Host, Devin Axtman, and I will be taking you on this week’s recap journey.

#CPChatNow regular, Dave Smith, started the conversation by posting a video about the Alinker, a walk-assisted device.  Members unanimously agreed it would be beneficial and preferable to using a walker:

#CPChatNow members Kate and Jocelyn returned and debated the proper pronunciation of Cerebral Palsy along with Rachel:

Kate also sparked much engaging conversation about having mild CP and not feeling like she fits in within the disability community:

Members also spoke of their fondness and desire to learn American Sign Language (ASL):

Finally, #CPChatNow Co-Host, Zachary Fenell, ended the chat on a happy note by announcing that he had recently taken a part time job at the local library:

Also, please join us on MAY 25th for our monthly Google Hangout (tip of the cap to Zach for backing up my errant throw):

Finally, this brings us to our Extend-The-Conversation question: Where are some areas the disability community can improve its inclusion of others?  Please share your answer in the comments and be sure to join us on Twitter every Wednesday at 8 Eastern Time. 

 

#CPChatNow Recap 3-22-2017

Wednesday, March 22nd, 2017, saw a meandering #CPChatNow Twitter chat that moved from CP-like symptoms in dogs, to parenting with CP, to efforts to increase fitness in people with Cerebral Palsy during CP Awareness Month.  I am your #CPChatNow Interim-Co-Host, Devin Axtman, and I will be your conductor on this week’s recap.

The evening began on a goofy note as the gang discussed Cerebral Palsy-like symptoms in dogs:

The group discussing Cerebral Hypoplasia, CP in dogs

Things turned to a happy note as a #CPChatNow regular, Brooklyn, came back to chat and discuss her children enrolling in jiu jitsu:

Brooklyn discussing her kids enrollment in jitsu and benefits

The chat turned to a happy announcement as Co-Host, Zachary Fennell, announced that #CPChatNow’s apparel sales raised $170 for the Keep On Keeping On Foundation:

Zach announces #CPChatNow raised $170 for the Keep on Keeping On Foundaton

Next, talk turned to fitness and CP. Zach mentioned the #SweatForCP challenge:

Zach asking if anyone has heard about the #SweatForCP challenge and sharing an article

Finally, I brought up the 7 Minute Workout App from the Cerebral Palsy Foundation. Talk turned to how showcasing people with CP demonstrating their fitness routines is becoming more of a priority.

Devin bringing up the CPF 7 Minute fitness app. Zach bringing up the fact people with CP are shown doing exercises

This brings us to this week’s Extend-The-Conversation question: What are ways you have tried to increase your fitness level with CP?  Please leave your responses in the comments!

Finally, please don’t forget our Google Hangout next Thursday, March 30th at 8 PM EST!

Picture of a sunset with "What are ways you try to increase your fitness level with CP?

Me announcing the Hangout and Zach Have a great week everyone!

#CPChatNow Recap- 3-8-2017

This week on #CPChatNow there were a variety of topics talked about as always.  The topics ranged from our co-host’s time in Spain on his study abroad trip to the difficulty of finding shoes.  This is your interim co-host, Devin Axtman, taking you along on this week’s recap.  All aboard!

Unfortunately, our other co-host, Zach Fenell, missed his first chat since September of 2014 due to a power outage.

Zach Fennell describing how he missed this chat due to a power outage

I also shared our regular co-host, Blake’s, blog from his study abroad trip in Spain.  The blog is worth checking out for the attempt at the wheelchair ramp alone!

Devin talking about Blake's blog on the ridiculous wheelchair ramp. Hannah saying it reminds her of escalators.

Next we talked about the common misperception people have that disability is something that needs to be fixed.  Hannah and Blemi agreed that the person with a disability has a right to decide whether they want to be fixed or not.

Hannah and Blemi talking about the misconception disability needs to be fixed

Hannah and I talked about ignorant comments others had made towards us including at a concert and when somebody blessed my legs.

Hannah talking about someone asking if she can stand at a concert. I responded with how somebody blessed my legs.

Finally, many chimed in with a common problem people with CP face, finding stylish shoes.

Discussion about difficulty of finding stylish shoes between Hannah, Devin, and Blemi.

What are some everyday things you find that are difficult to find because of your CP?This brings us to our extend-the-conversation question: What are some everyday things that are difficult to find because of your CP? Please share your responses in the comments.

Please join us next Wednesday for more #CPChatNow fun!

#CPChatNow Recap 2-22-2017

This week’s #CPChatNow chat was lively as usual and highlighted the different things people in our community experience in our daily lives.  This is #CPChatNow Interim Co-Host, Devin Axtman, and I will be taking you along on this week’s recap.

We welcomed a new member to the #CPChatNow Twitter chat family as Rachel who is teaching English in Spain joined us.  She heard about us after reading Co-Host Zach Fenell and #CPChatNow co-founder John Quinn’s books and connecting via our Facebook page and monthly Google Hangout.

Rachel expressing hope she is using Twitter correctly with a Chris Farley meme that says Technology and Stuff

Talk soon turned to a common hobby in the disability community, naming assistive devices!  Hannah shared her awesome names for her scooters.

Hannah talking about her scooter names "Hank the Tank" and ArsonShira and Zach both talked about her goal of publishing her poems and spreading knowledge and awareness about CP.  Zach offered his experienced advice.

Shira talking with Zach about her goal of publishing her poems of her experience with CPI also had to needle #CPChatNow co-host Blake from his study abroad stint in Spain about not joining us while Rachel stayed up in Spain.  Blake quickly put me in my place and proved he is staying busy as always.

Devin needling Blake he is not on the chat and Blake listing the 5 things he is doing

Finally, Rachel, Zach and I talked about things our parents said while we walked as youngsters and the common experience of feeling like a horse.

Devin talked about how his mom told him to take big steps and not to clomp. Rachel said she heard the same thing and often felt like a horseThis leads us to our extend-the-conversation question: What common parental advice do you hear (or give if you’re a parent) related to cerebral palsy?  Please share your responses in the comments!  What common parental advice do you hear (or give) related to Cerebral Palsy? Extend-The-Conversation Question

Finally, please join us for our focus chat with Alena Brand on the benefits computer science can bring to CP next Wednesday and continue to follow along on Facebook.

Zach announces Alena's focus chat on Computer Science and CP on March 1st

Have a great week!

Devin