Tag Archives: cerebral palsy

#CPChatNow Recap- 8-23-17

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#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- 7-19-2017

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This past week was a lively week in #CPChatNow as always.  Members discussed marathon training, the impacts of road trips on their CP, media portrayals of disability, and the use of CP in their Twitter handle.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

#CPChatNow Co-Host, Zachary Fenell, opened the chat with some exciting news, announcing that he is training for a marathon with the help of original #CPChatNow member, John Quinn.

Zach announcing that he is training for a marathon 22 miles per days with John Quinn's help

John Quinn stating that he did the San Diego marahon

Next, talk turned to difficulties members have on roadtrips due to the time spent in the car making their muscles tight.

Members discussing how roadtrips impact their depth perception and muscles

#CPChatNow member, Shira, also talked about the issues she had with the media regularly putting prominence on a person’s disability over other aspects of their story. Members differed on whether it was to grab attention or highlight the increased risk of violence people with CP face.

Members discussing disability use in headlines

Finally, talk turned to the reasons members do or do not use CP in their Twitter handle.  Members discussed how it is part of their life and that they use it to empower others while others did not perceive CP as something that defines them.

Zach and I talking about how I use my CP Twitter handle as a tool to empower others

Kate stating she had it in her handle so others would know when she followed someone. Blake stated he felt inspiration stuck

Now, for some housekeeping announcements. The first is that Co-Host, Zachary Fenell, will be leading a Focus Chat on writing a CP book/memoir on July 26th!

Also, our next Google Hangout will be taking place on July 27th

Now, to our Extend-The-Conversation question.  I am going to play off Shira’s question for this one: What are some of your complaints about disability and the media?  Please share them in the comments.

Tweet you later!

Devin

A street sign behind a clear blue sky with clouds. The sign has arrows saying internet, radio, magazines pointing to the left with television and newspapers pointing to the right. The CPChatNow logo is in white on top of a pink background and the extend the conversation question is also there in white

#CPChatNow Recap- 6-7-2017

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This week was an eventful week as always in #CPChatNow Land.  Members discussed a wide range of things from getting new leg braces, to doing ballet as kids, to underrepresentation in the Cerebral Palsy community.  This is Devin Axtman taking you along for this week’s ride.

First of all, I am humbled and honored to serve as full time Co-Host/Engineer for #CPChatNow.  Blake and Zach will both be staying on as co-hosts and contributing:

Zach announcing I will serve as a co-host

I started the conversation by discussing how I am in the process of getting new leg braces.  Christine and I bonded over our mutual hatred of the casting saw:

Me discussing getting new leg braces and Christine discussing her hatred of the casting saw

Next, Susanne talked about how she did ballet for 15 years and it helped stretch her calves and ankles. This is a great example of non-traditional methods being therapy for CP:

Susanne talks about how doing ballet for 15 years stretched her calves and ankles.

Talk shifted to public figures with CP and what complications are underrepresented in conversations:

Next, talk turned to issues that people with speech issues, a potential complication of CP, face:

Members shared their issues with difficulties with speech and their history with speech therapy.  On a positive note, Susanne shared that her speech issues landed her an audition:

Now, we’ll end the recap on some good news.  The person who attacked a man with CP at a gas station was arrested this week. However, Rachel pointed out that there is still work to do.

Finally, our next Google Hangout will be on Thursday, June 29th:

This brings us to our Extend-The-Conversation Question: What are some complications from CP that are underrepresented? Please share your answers in the comments. Extend-The-Conversation graphic: What are some complications from CP that are underrepresented?

 

#CPChatNow Recap- 5-10-2017

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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- A Serious Chat About Comedy

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This week brought up one of our best focus chats yet, as #CPChatNow regular, Susanne Kate Jones, led a serious chat about comedy.  I’m your #CPChatNow Interim Co-Host, Devin Axtman, taking you along for the ride. So, what are you waiting for?  Hop aboard and let’s get geauxing!

Susanne first introduced herself by noting her comedy experience:

Susane describing her degrees from LSU

Susanne discussing the comedy classes she has taken

Susanne came up with some outstanding questions.  Her first question asked about people’s favorite comedian and comedy movie or TV show:

Alena also specifically brought up how the ABC show Speechless is her favorite because it highlights disability:

Susanne next asked about the importance of comedy and humor.  Members chimed in with their thoughts:

Susanne next asked if members felt there were any topics that are comedically off limits:

Members chimed in with various different topics they felt were comedically off limits:

Ultimately, we agreed it depends on the situation:

Next, Susanne asked if comedy could be used to teach about disability related issues. Members largely agreed that it can allow others to relate to CP easier.

 

Next, Susanne asked why members thought there were so many successful comics with CP. Members largely agreed that CP gives comics a unique story that comics can tell.  Members also spoke of comedy as a coping mechanism:

Finally, Susanne asked about ways to make comedy more accessible. Members discussed various ways, focusing on physical and digital access.

This brings us to our Extend-The-Conversation Question, “What role does humor or comedy play in your daily life with CP?” Extend the conversation question with #CPChatNow Logo

Please leave your answer in the comments and thanks for reading!

#CPChatNow Recap 3-22-2017

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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

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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

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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

#CPChatNow Recap- Having A Disability and Dating/Being a Part of the LGBTQ+ Community

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This week’s #CPChatNow focus chat focused on “Having a Disability and Dating/Being a Part of the LGBTQ+ Community”!  I am #CPChatNow interim co-host Devin Axtman, and I will be the conductor on this week’s recap of our Twitter chat.

#CPChatNow community member, Yasmin, led the chat from the UK!  We thank Yasmin for her efforts and for openly sharing her experiences.

Yasmin sparked the chat’s dialogue by disclosing that she identifies as asexual and how she learned about the term.


Yasmin also disclosed that she identifies as Aromanitc.

yas-aro-screenshot

Yasmin reported her identity was a gradual process that took awhile to sink in.

yasmin ‏@yas8900 Jan 25 More Q1. I'm Asexual and Aromantic, Q2. I don't date. #CPChatNow 0 replies 0 retweets 0 likes Reply Retweet Like Zachary Fenell ‏@zacharyfenell Jan 25 More At what age did you realize this @yas8900? Did you first fear something was

Yasmin really sparked the conversation with common misconceptions around those who identify as asexual.

misconceptions-4

#CPChatNow member Jen talked about how she feels misconceptions of the disability community and dating start.

jen-misconceptions

Finally, #CPChatNow members Alena and Erin talked about their climbing and skiing skills!

Alena Brand Tweet: Hey guys! Sorry I've been really busy! #CPChatNow Image of Alena Rockclimbing

alena brand ‏@AlenaBrand Jan 25 More Next month for adapted rec we're going skiing so I'm really excited about that! #cpchatnow I've never been skiing 2 replies 0 retweets 2 likes Reply 2 Retweet Like 2 EMDeerx Muse ‏@emdeerx Following More @AlenaBrand Downhill skiing is a blast. I just got home from Utah a week ago. #CPChatNow 5:28 PM - 26 Jan 2017 0 replies 0 retweets 0 likes

Thank you for riding along with me during this recap.  Now for our extend-the-conversation question:

What are some misconceptions surrounding the disability community and dating? EXTEND-THE-CONVERSATION-QUESTION
What are some misconceptions surrounding the disability community and dating?  Please share in the comments!

Tweet you later!

-Devin

#CPChatNow Recap- 08-24-2016

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Wednesday, August 24th, 2016 we at #CPChatNow waded into the thought pool’s deep end. I am co-host Zachary Fenell, ready to recap what turned into a very insightful chat. By post end you may think about cerebral palsy in new ways!

Oddly enough though, the conversation started off slow. Personally, regular Devin set my night off to a nice start.

Zachary blogs about life with cerebral palsy at http://zacharyfenell.comFor your reading pleasure I will add a link here, “You Belong! No Matter Your Cerebral Palsy.” If you enjoy the read, check out my other posts, and even subscribe!

Anyways I should stop self-promoting and refocus on recapping the August 24th chat. Discussion about success began the wading into the metaphorical thought pool’s deep end.

What makes someone successful?Dialogue continued on what makes someone successful and also life’s priorities. A late comer soon turned the chatter more cerebral palsy specific.

The #CPChatNow community discusses "Is it weird not to feel whole?"Shira‘s question sparked concern from regular Jen.

Shira explains why she asked her question.I tried attributing Shira’s feelings in-part to her age. However, additional factors became increasingly evident.

Some participants wonder how cerebral palsy changed them physically.Other participants’ responses on the matter fueled my gender theory.

More #CPChatNow participants visualize how life was "supposed" to be.Shall we keep exploring the issue at hand? Answer for the week’s extend-the-conversation question “Do you ever visualize how life was ‘supposed’ to be?” Respond via a comment in the “Comments” section.

Before wrapping up I wish to revisit a point captured in an above screen shot. Participants expressed how #CPChatNow reduced feeling lonely. That speaks to a support system’s importance, something emphasized again later in the night.

#CPChatNow discusses the importance of having a good support network.We at #CPChatNow can assist passing the time required to build a good in-person support network.

Let #CPChatNow be your support network!Obviously participating in the weekly cerebral palsy Twitter chat supplies the best way to utilize our support network. Still my co-host Blake Henry and I know not everyone tweets. Hence we work hard to provide other platforms for community contribution.

First and foremost like our Facebook fan page. The page shares cerebral palsy related stories daily. Like and leave comments on the posted items.

Answer this week's extend-the-conversation question! Do you ever visualize how life was "supposed" to be?Then too exists opportunity within the extend-the-conversation question. Remember today’s question asks “Do you ever visualize how life was ‘supposed’ to be?”

Reply by commenting below.

Later!

-Zachary