#CPChatNow Recap- 9/11/2019

This past week in #CPChatNow was animated as always. Members talked about things like getting a bad night’s sleep, their routine in the morning, and the age old debate of audio books versus physical books.

Members first talked about something that plagues everyone from time to time, a bad night’s sleep and how long it takes them to recover:

zach asks how long members need to recover from a bad night's sleep. chris said it takes forever, blemi said 2 or 3 days and she needs 7 hours of sleep with 8 or 9 being better, zach said he is best with 8 hours of sleep and i tweeted i feel it the next day with 6.5-7 hours being optimal

Next, Zach asked members if they have to wake up earlier to get ready because of CP:

zach asked if members have to wake up early in the morning to get ready due to disability, I said no, but it does take me 5 minutes to put my shoes and orthotics on, zach said he saves time by keeping his shoes tied

I also recommended a book that I am listening to, Strangers Assume My Girlfriend Is My Nurse. Zach and I discussed what I do when I listen to audiobooks:

I recommend the book Strangers Assume My Girlfriend is My Nurse by Shane Burcaw. Zach asked if I multi-task while listening and I shared I do it on my train commute

Next, members engaged in the new school age old debate, physical books or audio books. Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Hannah and Dave Smith also weighed in on the audiobook debate with Hannah tweeting that she likes physical books because she can physically turn the pages and Dave tweeting it depends on the thing he is reading:

The conversation about audio books versus paper books continued. Hannah said she likes physical books, but they are a chore with her vision and she often gets distracted in audio books.Dave smith said he likes physical books for favorite authors and ebooks for reading and textbooks.

This brings us to our Extend-The-Conversation Question. I will use Zach’s question and put my own twist on it: Do you have to adjust your routine due to disability? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

The Extend-The-Conversation Question: Do you have to adjust your routine due to disability? with Extend-The-Conversation in green above the question, the multicolored #CPChatNow logo, a black alarm clock showing 10:10

Please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow

-Devin

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#CPChatNow Recap- 8-28-2019

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

#CPChatNow Recap- 8-14-2019

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

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- 7/17/2019

Last week in #CPChatNow was popping as always. Members talked about a ramp for their pool, going to graduate school, the Netflix show Special, and why they would not crowdsurf in their wheelchair at a concert. I am Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

We start this week’s recap with a cool picture of Hannah’s new pool ramp (and the world famous Levi!). This is an awesome example of people working to provide access.

Hannah announces her backyard now contains a ramp to her pool. there is a picture of the ramp along with her dog.

Next, another #CPChatNow Co-Host came to the party. Jorge, also known as Blake, checked in. He is preparing for the GMAT to start graduate school.

jorge tweets about preparing for the gmat to start graduate school for an M.S. in Commerce

Seth checked in with his thoughts about the Netflix show, Special.

seth tweets about watching special on netflix, a show about a gay man with CP. He says it is a funny, adult look at a dysfunctional mother/son relationship

Finally, Zach tweeted a video of a man in a wheelchair crowdsurfing at a concert. Hannah and I both agreed we would not do so due to fears of what would what happen. Hannah shared a story about a drunk person kicking her scooter.

zach tweets a video about a wheelchair user crowd surfing. hannah and i agree we would not due to fears about what would happen and she shared a story of her scooter being kicked by a drunk person.

This brings us to our Extend-The-Conversation Question: What is the worst thing someone has done to your mobility equipment?

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

-Devin

#CPChatNow Recap- 7/3/2019

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

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