Tag Archives: cerebral palsy

#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

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#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.

#CPChatNow Recap- 3/27/2019

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*SPORTS ANCHOR VOICE* “IT’S TIME FOR YOUR WEEKLY HIGHLIGHTS OF THE PAST WEEK IN #CPCHATNOW! I’M DEVIN AXTMAN, the #CPChatNow Co-Host, taking you along for the ride on this week’s recap. PLAY BALL!

First, our other #CPChatNow Co-Host, Zachary Fenell offered a preview of his next video, If Bob Ross had Cerebral Palsy:

Zach teasing his next video, If Bob Ross had Cerebral Palsy

Next, Zach and I discussed the opening day for baseball season and whether our disability impacts our plans at the ballpark:

Zach asked how people's disabilities impact their experience at the ballpark when Devin tweeted he is going to opening day
zach said once he is seated he does not get up and relies on friends to get food. I tweeted this was my same plan.

Continuing down the lineup of chat highlights, talk turned to the sitcom Speechless and member’s thoughts on season 3. Zach and Seth offered their thoughts on a recent episode while I shared one of my recent favorites.

Zach and seth tweeted about their enjoyment of the most recent episode of speechless. i shared I liked when Maya made the board game. zach tweeted he likes when everyone is involved

Zach and I then shared our thoughts on recent direction of the show and what characters we enjoyed watching:

i shared i thought this season was the weakest, but still worth watching. i shared i tune out kenneth and jimmy but enjoy ray and dillon. zach shared jimmy and ray are his favorite characters and he enjoys this season more than the last.

Next, Paul and Zach brought up the fact that JJ is unable to speak on the show while the actor, Micah Fowler, can speak fine.

paul asks why JJ is non-verbal while the actor is verbal. zach said no idea with a chris farley gif

This brings us to our Extend-The-Conversation question: What improvements would you like in a Speechless season 4?

the extend-the-conversation graphic. a green highway sign with the word improvement in front of a blue sky. there is a black text saying 'what improvements would you like to see in a speechless season 4?' the white #CPChatNow logo is in the left hand corner

*SPORTS ANCHOR VOICE* “THANKS FOR WATCHING! PLEASE JOIN US EACH WEDNESDAY AT 8 EASTERN AT #CPChatNow on Twitter! THIS IS DEVIN AXTMAN SIGNING OFF!

#CPChatNow Recap- 3/20/2019

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This past week in #CPChatNow was bumping as always. Members discussed doing art, surprising interests, and the trending hashtag #AbeldsAreWeird. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I hope you will spare me some personal happy news. I was engaged on vacation at Disney World recently. I know this is sappy, but I want to encourage everyone to keep trying. All it takes is finding the right person:

Zach asked me how my vacation was. i replied with magical with a picture of my fiancee showing off her engagement ring. i am in a gray shirt with mickey mouse on it and she is in a white minnie mouse shirt

Next, Zach asked if members had surprising interests. Paul shared an interest in collecting things:

paul said he likes to collect stuff like figurines, wall hangings, records, etc. each room has a different color and vibe

Hannah also made some cool art and decided to share it with members:

Hannah tweeted her artistic side. She created a drawing that said, "Fight in me' with a teal and purple butterfly. there is gray, pink, orange, and yellow.

Finally, members discussed the recent trending #AbeldsAreWeird hashtag. I shared my experience of a comment while waiting for a train.

I tweeted my #abeldsareweird hashtag. i was waiting for a train. A guy responded if he was in a wheelchair, he would kill himself.

A member retweeted Nicole Rodovsky’s tweet about parents shushing their children when they ask questions and not directing their questions to the person using a wheelchair:

nicole rodvosky tweets the worst thing people do is shush their child or pull them away. encourage them to ask them face to face and ask the actual person.

This brings us to our Extend the Conversation part of the recap. What are some weird moments with your disability?

I hope you enjoyed the recap! Please join us for more conversation and community each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 2-20-2019

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This past week in #CPChatNow was buzzing as always. Members talked about how #DisabledPeopleAreHot, plans for CP Awareness Month, incompetent nurses, and controversy with Walmart and an employee with CP. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

The hashtag #DisabledPeopleAreHot swept Twitter the past week. Many #CPChatNow members posted pictures for the hashtag. Here is a newcomer to #CPChatNow, Lionel Menchaca.

Lionel's #DisabledPeopleAreHot picture

March is Cerebral Palsy Awareness month. Zach asked if members had plans for the upcoming month. Veronica and Zach discuss upcoming CP awareness plans

Veronica Hosking talked about a phone bank for the local UCP and Zach talked about a team for the Race to Empower which is held in May due to Cleveland winters:

Hannah tweeted about her frustration of being in the hospital and her leg spasms triggering an alarm. A hospital tech asked a truly unbelievably incompetent question:

Hannah tweeted about a tech asking to predict her leg spasms so she doesn't trigger the bed alarm. Blemi and Devin tweeted how nice it would be to predict spasms.

Finally, #CPChatNow shared collective outrage at a change in Walmart policy which may cause a greeter with CP to lose his job:

Hannah passes along a tweet about a Walmart greeter with CP possibly losing his job due to a change in job description. I express disbelief an accommodation cannot be worked out

#CPChatNow members shared our frustrations with employment and attitudes of employees:

Hannah tweets the employment system is rigged. Hosking Poet shares they need to be reminded of EOE laws. Blemi shares she is glad she stopped shopping there and many greeters may be out of jobs.


This brings us to our Extend-The-Conversation Question: What is the worst thing a healthcare employee has said to you? Please join us each Wednesday at 8 Eastern on #CPChatNow.

This week's extend-the-conversation question asks "What is the worst thing a healthcare employee has said to you?

-Devin

#CPChatNow Recap- 2-6-2019

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#CPChatNow included various different topics last Wednesday including: future employability, Valentine’s Day coming up, and even member’s favorite breakfast cereal. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Shira shared the memory of encountering a Deaf employee at the bowling alley and struggling to communicate with him. She raised an issue many people with disabilities fear, their future employability:

Zach and Shira talking about a memory at a bowling alley and how it relates to fears about future employability
Zach and Blemi chat about Valentine's Day being a forced holiday

Zach brought up Valentine’s Day and members shared various thoughts from extreme indifference to excitement. Blemi and Zach talked about the day sometimes being a forced holiday:

Finally, Zach and Paul talked about their favorite breakfast cereals:

Zach and Paul talk about breakfast cereals. Paul likes Count Chocula and Zach likes Cocco Puffs followed by Fruity Pebbles with a shout out to Trix for the best commercials.

This brings us to our Extend-The-Conversation Question: Have you ever had fears related to your employability due to your disability?

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