Tag Archives: cerebral palsy

#CPChatNow Recap- 8-28-2019

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This past week in #CPChatNow was jumping as always. Members talked about topics like submitting their first manuscript, snapping their fingers, and the bane of many people with CP’s existence, shoes. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to recognize #CPChatNow’s resident scientist, Timmy. Timmy is starting his PhD program and submitted his first 1st author manuscript. Good luck this year Timmy!

Zach and Timmy tweet about Timmy's first 1st author manuscript. A paper that condenses his master's thesis.

Next, Zach asked if members are able to snap their fingers, something that is difficult for many people with CP.

Blemi tweets she is able to snap her fingers

Talk then turned to whether members could do things like the Vulcan Salute, sing, and play an instrument.

I tweet I cannot snap or do the vulcan salute. Grace tweeted she cannot do the salute or whistle a melody while she can sing. Zach tweets he cannot sing, snap, or whistle. Grace tweets she has practice but can't play an instrument. Zach tweets practice is important to doing something well.

Next, talk turned to how long member’s shoes last them. Keens and Docs were popular durable shoes. Many members expressed that shoes did not last them long.

Zach asked how long it took member's shoes to wear down. Chris tweeted it depends on the construction, but she has luck with keens. Blemi mentions docs as well. Heather tweets her shoes wear down at different times.
Grace tweets her shoes can wear down in weeks or month, but it can be a year. She tweets her left shoe can wear out faster.

Finally, Zach mentioned a CP life hack he used at a recent wedding, wearing black tennis shoes rather than dress shoes.

zach tweets that he wears black tennis shoes instead of dress shoes as a CP life hack. Blemi tweets zach is lucky he is a guy. Zach tweets he would be a mess in heels

Zach’s tweet about tennis shoes inspires our Extend-The-Conversation Question: What are your CP life hacks? Share your answers in the comments!

Extend-the-conversation question graphic. An easy button with what are your CP life hacks? and the white #CPChatNow logo

Thanks for reading and join us each Wednesday at #CPChatNow at 8 Eastern on Twitter.

-Devin

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#CPChatNow Recap- 08-21-2019

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Wednesdays equal appointment tweeting, at least for participants in the live cerebral palsy Twitter chat #CPChatNow. To tell you more, I am chat co-host Zachary Fenell. In my opinion the best way to demonstrate the appointment tweeting concept remains delivering you your weekly recap.

Since everyone begins gathering at 8pm ET, you can expect almost immediate responses to your tweets. Such quick response time helps to build a bond between those who contribute to the dialogue. For example, take a look at how others responded to a humorous story my co-host Devin Axtman shared.

Members in #CPChatNow bond over similar experiences.

Devin brought up a Lyft driver who recognized Devin’s cerebral palsy. The driver’s familiarity with CP stemmed from a family member having the “Palsy.” The tale gave me flashbacks to college when a peer saw my movements and asked a similar question. Like long-time chat regular Blemi observed, “People who know. Know.”

Another attribute which makes #CPChatNow appointment tweeting involves the life updates. Each week chat regulars share the happenings in their lives. On Wednesday, August 21st, 2019 Shira shared an awesome development.

Shira shares an exciting life update with #CPChatNow.

Shira recently learned every week her college brings in therapy dogs for de-stressing. Devin mentioned the college he works for does the same during finals, an especially stressful time! Unfortunately, stress knows no bounds. Whether school or life, you can easily become stressed. Hence the importance to find an outlet to relieve your anxiety. With that said, answer as the week’s extend-the-conversation question “How do you relieve stress?”

Leave your reply in the “Comments” section. Then afterwards make sure to add #CPChatNow to your weekly calendar. The Twitter chat takes place every Wednesday, beginning at 8pm ET. Include the hashtag in your tweets and join the conversation! I hope to tweet you soon.

Until next time, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks, "How do you relieve stress?"
Leave your answer in the “Comments” section below!

#CPChatNow Recap- 8-14-2019

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This past week in #CPChatNow was buzzing as always! Members talked about various things such as therapy they enjoyed over the years, learning to fall, and disaster preparedness with a disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we start with a dreaded subject when you have CP, falls. This was sparked by a post in The Mighty about falling. Members discussed things such as learning to fall and their fear of falling. Hannah learned to fall so well she taught others!

Zach asks if members have been afraid to fall. Hannah tweeted she never feared it and she taught a teacher's daughter how to fall

Zach shared his fears about falling were largely about messing up large events. I shared I had to wear wrist guards due to fear of hurting myself. Heather did not have to worry about this since her mom is a nurse:

Devin tweets he's not afraid, but mindful, zach tweets his fears are screwing up big events, I tweet that I wore wrist guards on the playground. Heather tweeted she did not, but her mom is a nurse.

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes:

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair:

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair
Zach tweets about getting nervous under pressure and then states he might surprise himself, but both agree they hope they never have to find out

We have talked about some heavy things in this recap, so I would like to end by focusing on a lighter topic. Therapy is a constant in many people’s lives with CP. Zach focused on therapy that was effective for us. Grace and I discussed horse therapy:

Zach tweets and asks about a therapy that helped you. I tweeted I loved horse therapy and Grace tweeted she had it from 6-18. Zach tweets he had PT on a weekly basis from 3 until starting college.

This brings us to our Extend-The-Conversation Question: What was your favorite moment in therapy? Please share your answer in the comments and join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

A picture of a woman jumping and smiling before a purple sky. What was your favorite moment in therapy? is above her head in white and Extend-The-Conversation-Question is below her in white with a white #CPChatNow in the lower left hand corner.

#CPChatNow- 7/31/2019

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This past week in #CPChatNow was buzzing as always. Members talked about a recent Micah Fowler interview, a computer mouse versus a track pad, coffee mugs, and also a peanut butter debate. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Speechless continues to be a popular topic during the chats. Forbes had a recent interview with Micah Fowler that is definitely worth checking out. The interview sparked discussion during the chat about how Speechless handled family and disability.

zach tweeted his enjoyment of the interview question about how speechless dealt with family. i tweeted about how my favorite episodes were how the show focused on how cp impacts other siblings. zach tweeted his appreciation of the show's honesty particularly the bonfire episode

Next, debate turned to whether members prefer a trackpad or a mouse with opinions mixed between a trackpad and a mouse.

zach asked if people like a trackpad or mouse. blemi said trackpad. i commented i like apple's trackpad because you can move the cursor and click all on the trackpad
jeni tweets she lost homework assignments because of trackpads due to her heel of her palm hitting the trackpad

Also, #CPChatNow weighed in on the age old debate, smooth or crunchy peanut butter.

Next, Zach asked members how they handle their coffee mug. Blemi and Shira responded they handle both the handle and the mug.

Zach asked if members held the coffee mug handle or cup. Blemi and Shira responded they handle the both the handle and the mug. blemi said she doesn't take chances after spilling hot liquids

Zach shared he uses travel mugs because they do not get hot and they have lids to prevent spills.

Zach shared he uses travel mugs because they do not get hot and they have lids to prevent spills

This brings us to our Extend-The-Conversation Question: What common items not designed specifically for accessibility do you use to meet your access needs?

Thanks for reading this week’s recap! Join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

-Devin

#CPChatNow Recap- 7/3/2019

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It was the day before the 4th of July and #CPChatNow brought the fireworks as usual. Members talked about fireworks, disability podcasts, wheelchair seats at sporting events, and just how far you mind can help overcome your disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride of this week’s recap.

First, members talked about fireworks themselves. Fireworks are also known as the bane of existence when you have the Cerebral Palsy startle reflex.

Zach asked if fireworks startled members. Jen stated they do and Daryl Perry agreed

Next, Zach brought up the cool story of Peter Kline. He has completed 45 marathons with disabled rider athletes. Well done Mr. Kline!

Zach posts about Peter Kline completing 45 marathons with different rider athletes
Paul Miller and Addiengeorge tweeted their appreciation towards Peter Kline

I would like to highlight one of my favorite podcasts (disability or otherwise), the Disability Visibility podcast. The podcast is hosted by Alice Wong and looks at different issues surrounding disability:

I recommend the Disability Visibility podcast. Zach recognized the host, Alice Wong, from the #CripTheVote chats.

Next, members talked about wheelchair seats at sporting events. Chris is going to an Indy Car race in Portland in September. She talked about an organization, @halfaccess, where people can post about the accessibility of a venue.

Zach tweeted about going to Bowling for Soup but being concerned about standing room only conditions. I reported it sucked when other people stood up when I had wheelchair seats and newer stadiums with elevated seats tended to be better. Chris tweeted about an organization called halfaccess that catalogue accessibility

Finally, #CPChatNow was tagged in an intriguing question by @cpandm. They asked if it was OK to be frustrated by others saying, “The body will do what you decide to make it do.” In other words, whether it is OK to be frustrated by your mind not being able to will your body to do things.

I responded to @cpandm's question. They felt frustrated since they can't will themselves to walk. I posted that the body doing what the mind wants it to do is unrealistic and that the will can't overcome things.
Zach's answer was that every case is different and the realm of possibility is different and that we need to listen to our bodies.

This brings us to our Extend-The-Conversation Question: How do you know when your body is telling you you’re at your limit? Share your answer in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

Thanks for reading!

-Devin

#CPChatNow Recap- 6/19/2019

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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- 4/10/2019

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This past week in #CPChatNow was interesting as always. Members discussed various topics such as problematic Lyft rides, meeting a significant other’s parents, and patronizing words. In honor of the Stanley Cup Playoffs, here are the 3 stars of the week presented by #CPChatNow Co-Host, Devin Axtman.

First, Hannah shared a problematic story with a Lyft driver. Unfortunately, she experienced discriminatory behavior from a Lyft driver refusing to give a ride due to fears Hannah’s wheelchair would scratch the car, but the second driver was great:

Hannah's story about taking a lyft when the driver refused to take her due to worries about her wheelchair scratching the car

Next, Zach and I talked about meeting a significant other’s parents for the first time when you have CP. This morphed into a discussion about me being miffed at the phrase ”seeing past disability.”

zach asks about meeting significant other's parents with cp. i said it was not an issue with my girlfriend's parents. we discussed the phrase seeing past a disability and then not defining someone by their disability

Finally, this led to a discussion of what words or phrases miff people. Seth tweeted his thoughts:

seth tweets about his words he is miffed by 'special' and "you'll get a speeding ticket"

This brings us to our Extend-The-Conversation Question: What words or phrases used to describe disability miff you? Please join us each Wednesday at #CPChatNow on Twitter at 8 Eastern.