2020

Posted on December 28, 2020 by devinaxtman

This past week in #CPChatNow occurred on Festivus, also known as Christmas Eve Eve. Members discussed their grievances about disability, a recent blog post from Tonia, their dream robotic health companion, and more. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to take a moment to recognize #CPChatNow’s 7th anniversary! Thank you to everyone who has participated with us!

zach tweets he realized it is the chat's seventh anniversary earlier this month. there is an image of two clinking champagne glasses with happy anniversary written above the glasses

To mark Festivus, the annual airing of grievances, members shared their grievances about disability:

zach and i discussed our grievances about disability. i tweeted my primary grievance is the amount of time it takes up with longer commutes, more appointments. zach tweeted his grievance of winter making cerebral palsy more challenging

Next, a great blog post Tonia wrote about the frustration of when accessing basic needs is not basic sparked great conversation. I tweeted about my amazement that Pee Math has an actual name. Pee Math is a concept that disabled people in particular calculate how long they can be out before going to the restroom due to access needs and not always accessible bathrooms.

tonia tweets about her latest blog post, i tweeted about pee math and stated i didn't know it was a thing, but i do it when going out in large places, tonia tweeted she didn't know the name for it, but she does it as well

Zach shared his further thoughts on Tonia’s blog and praised her for being vulnerable.

zach tweets the post is emotional and praised tonia's courage, he agreed there is a difference between being there physically and emotionally, zach stated he grew frustrated nobody asked her how to make the kitchen more accessible and that she was blamed for not doing pt, zach asked if she had time limits for using the restroom, tonia tweeted there were not time limits, but they went between classes or risked missing material

Finally, Zach was inspired by the movie Big Hero 6 to ask what members would prefer in a personal robotic healthcare companion.

zach asked members what they would want a personal healthcare companion to assist with after being inspired by the movie big hero 6. there is an image of baymax in a red and blue suit. i tweeted i want my own personal driver/transportation device, chris tweeted she wanted robotic lungs when first diagnosed with asthma, but she would now like a robotic immune system so she could program so she wouldn't be so sick

This brings us to our Extend-The-Conversation Question: What disability related task do you wish could be automatically performed for you?

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

-Devin

#CPChatNow Recap- 12/9/2020

Posted on December 15, 2020 by devinaxtman

This past week in #CPChatNow was thriving as always. Members discussed moving into new apartments, ideas for a disabled Disney princess, and their favorite toy growing up. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Seth shared some life news that he had recently moved into a new apartment. Seth also shared a bit about the precautions his aides are taking to avoid spreading COVID.

seth shared that he recently moved into a new apartment after his name came up on a list. seth shared his 2 aides rotate and one brings her kids, but they stay in a room

Next, Zach brought up a Change.org petition that called for Disney to develop a disabled princess:

zach shared a change.org petition calling for disney to create a princess with a disability. he thanked jen for pointing out the petition

Zach bringing up the petition led to a conversation about the types of stories people would like to see Disney tell about a disabled princess:

zach tweets he could see a princess with a disability discovering accessible clothing and learning how to overcome ignorant comments like "You're so pretty. It's a shame you're disabled." I tweeted I liked Zach's second comment and he thanked me.

zach tweets he does not feel remarks are meant to be insulting, instead they come from a place of ignorance, i tweeted that i feel it's the cumulative impact of those remarks that is damaging, zach tweeted he agrees that the cumulative impact of those remarks creates a negative perception which is damaging, paul tweets his agreement and that it is sad

Finally, talk turned to a common topic around the holiday season, member’s favorite toys to play with growing up:

zach asked if people had favorite toys to play with, i tweeted a picture of my stuffed monkey Jibbs

Blemi tweeted quite an interesting story about how she played with dolls as a kid!

blemi tweeted she played baby dolls. zach asked if she played mom or babysitter, blemi tweeted she played a single mother stripper. zach tweeted that is quite the backstory with a gif of bray wyatt saying yowie wowie.

Next, Zach and Paul talked about their favorite stuffed animals as a kid:

paul tweets his favorite stuff animal is a teddy bear. zach asks paul if he takes it everywhere and he tweeted he had a stuffed animal he took everywhere growing up. paul tweets he did take it everywhere and kept it for a long time. he tweeted he wanted to pass it to his kids, but his mother left it. zach tweeted his grandma bought him another stuffed animal when he lost it.

This brings us to our Extend-The-Conversation Question: What is your favorite gift you have received? Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

Thanks for reading!

-Devin

#CPChatNow Recap- 11/25/2020

Posted on December 1, 2020 by devinaxtman

This past week in #CPChatNow was busy as always. It was the night before Thanksgiving and things were cooking! Members discussed what they are grateful for in 2020, their favorite holiday movies, and more! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, #CPChatNow member, Mojo, stopped by and shared some insights about being a musician during the pandemic:

zach asks what he is most thankful for. mojo tweets family and quiet time. zach tweets he has gained gratitude for clean water, mojo tweets he can take water for granted and supply chain issues had him trying new recipes, zach asks about the year's impact on a do-it-yourself musician

mojo tweets he envies people with extra time for creation and he has made himself available to help people new to recording at home. he is working full time from home and has less time to create

Next, Zach asked about favorite holiday programming people liked to watch:

zach asks if there is favorite holiday programming people like to watch. zach tweets he enjoys the holiday baking championship, devin tweets he watches the rudolph and charlie brown specials, chris tweets he watches national lampoon's christmas vacation, zach tweets he likes the santa clause

Finally, Zach asked members what they are most grateful for in 2020:

zach asks what members are most grateful for and tweets his answer is toilet paper

chris tweets she is most grateful for people and while she doesn't trust people to do the right thing with covid, but she appreciates human interaction and particularly healthcare workers, zach tweets cleaners and healthcare workers deserve recognition, blemi tweets she is grateful for an understanding and stable job, but she is looking forward to christmas break, zach tweets he is grateful for employment even though his hours are being reduced due to the library going to drive thru and curbside service

This brings us to our Extend-The-Conversation Question: What are you most grateful for in 2020?

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

-Devin

#CPChatNow Recap- 11/11/2020

Posted on November 17, 2020 by devinaxtman

This past week in #CPChatNow was lively as always. Members discussed what they are doing to cope with the continued rise of COVID, their favorite holiday traditions, and more! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, members discussed what they have been doing to handle the continued march of COVID. Zach and Tonia discussed their recent effort towards writing their novels.

zach asks if everyone is staying safe and healthy, tonia tweets she is quarantining like a boss, zach asks if #NaNoWriMo is helping by keeping her focused, tonia tweeted that it is and it is summer in her story.

Members next discussed the new normal that has become our reality with COVID. Talk turned to how masks are now seen as an expected thing that people wear. Dave also tweeted that masks have been an accepted part of everyday life in other countries for a long time.

zach tweeted he is doubtful we will ever return to a covid normal, dave tweeted it will be a different normal, zach tweeted he expects face masks to be just another article of clothing and they will be required like pants, blemi tweets this is how it should be, zach tweets indecent exposure will now include nostrils and mouths

Next, Zach asked if members felt they could have multiple best friends. Jen tweeted she felt people could and Zach tweeted he has best friends from different aspects of his life:

zach asks if members feel they can have multiple best friends, jen tweets she feels that you can, zach tweets he has best friends from different aspects of his life like high school and college

Finally, we discussed our favorite holiday traditions.

i asked what members favorite holiday traditions are. i joked mine is asking blemi why canada doesn't have thanksgiving on thursday so they can get a 4 day weekend. blemi tweeted she loves christmas, being with family, and christmas lights. she tweeted it is also her birthday and that should be a holiday. chris tweeted she gets starbucks holiday drinks and cooks something nice for dinner.

Zach shared a tradition that definitely makes me jealous (and hungry!).

zach tweets his favorite tradition is an italian fish dinner on christmas eve, zach tweeted they have a variety of fish dishes: shrimps, smelts, cod balls, spaghetti and clams, and lobster

This brings us to our Extend-The-Conversation Question: What is your favorite holiday tradition? Please share your answers in the comments!

Please make sure to join us each Wednesday at 8 Eastern on Twitter at #CPChatNow!

-Devin

#CPChatNow Recap- 10-28-2020

Posted on November 4, 2020 by devinaxtman

This past week in #CPChatNow was popping as always. Members discussed their favorite Halloween candy, what they do to manage pain, and their favorite part of November. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members discussed their favorite Halloween candy. I also shared my negative thoughts about candy corn.

i asked what member's favorite halloween candy is. i also shared why i thought candy corn is trash. jen tweeted snickers is her favorite candy, rb tweeted she has always wanted to try candy corn, but she has heard it tastes like balls. she tweeted she prefers hairbo

timmy tweeted a picture of reese's peanut butter cups, zach tweeted peanut butter and chocolate is magical, tonia says tweeted candy corn does not love her back and she likes peanut butter snickers, esperesso chocolate, and awake dark chocolate, zach tweeted he likes anything king sized and candy corn is trash because it doesn't come in king sized

Next, Zach and Casey discussed how they managed pain:

zach tweeted he uses a heating pad to measure back and shoulder pain and has used a tens unit before. casey tweeted a tens unit is like electric shock therapy, but it's portable. zach tweeted he was hurt when he turned the knob the wrong way, casey said the tens unit helps to put them to sleep and asked zach if he is impacted by weather, zach tweeted colder weather makes him sore

Finally, Zach asked members what their favorite part of November is. Members discussed the election being over and writing their novel.

zach asks if members have a favorite part of november, chris tweeted her favorite part is when the election is over, tonia tweeted her favorite part is NaNo- an effort for people to write their novels, zach asked if she was ready, tonia tweeted she finished her to do list, but may have to alter her to word count due to injury

This brings us to our Extend-The-Conversation Question: What is your favorite part of Fall?

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

-Devin

#CPChatNow Recap- 10-14-2020

Posted on October 20, 2020 by devinaxtman

This past week in #CPChatNow was busy as always. Members discussed writing memoirs, other people addressing their limitations, and their voting plans. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Many members of #CPChatNow have a hobby of writing. Chris shared that he was starting his memoir and Zach shared some tips.

chris tweeted he is struggling with his memoir and bought a book memoir writing for dummies, zach asked what he is struggling with, chris tweeted he is having a hard time including enough details and struggling with vivid memories

zach suggests using things like photos, videos, or music to refresh his memory, or speaking with other relatives,

Next, talk turned to other people asking about your limitations in a helpful way. Zach shared a positive interaction that happened at work:

zach tweeted about subbing at a branch of a library and someone asked if he had any limitations. zach tweeted he liked her asking him directly. i tweeted i would like people treating me as competent, zach tweeted he does see how it could be awkward for the other person because they don't want to offend

Finally, talk turned to a common and important topic lately, making a plan to vote. Members discussed their voting plans and why they were choosing their voting method. You can make your own plan to vote at https://iwillvote.com/. As one of the leaders of disability rights movement, Justin Dart, said, “Vote as if your life depends on it! Because it does!”:

i tweeted and asked about people's voting plan, jen tweeted she did not change her voter registration, chris tweeted he mailed in his ballot, edith miller tweeted she voted yesterday at the county courthouse dropbox

i tweeted i will vote in person by doing the curbside pickup option, zach tweeted he went absentee for convenience in case he picks up extra shifts and can research candidates, i tweet i trusted my vote will be counted more in person and texas makes it hard to vote by mail, zach tweeted issues with mail in voting crossed his mind, but he is trusting the system

Finally, Veronica shared a picture of her mail in ballot. Great job Veronica!:

veronica shared a picture of her mail in ballot, there is an image that says VOTING INSTRUCTIONS, INSTRUCCIONES PARA VOTAR with a sticker of a ballot with glasses, a yellow and black BALLOT hat and I VOTED below the ballot

This brings us to our Extend-The-Conversation Question: What is your plan for voting?

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

-Devin

#CPChatNow Recap- 9-30-2020

Posted on October 6, 2020 by devinaxtman

The last #CPChatNow of September was busy as always! Members discussed things such as their art, podcasts, and keeping themselves on track with what they needed to do. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, #CPChatNow mama bear, Erin, talked about her art. Erin would like to use her art to inspire people.

erin tweets she is doing paintings to build an etsy store. erin tweets she is mainly doing landscapes and has backgrounds for be yourself; everyone else is taken and happy fall.

erin shares last week's painting, a painting with a sky at sunset. there is a brown path with dark green landscapes on both sides

Next, talk turned to Chris’s upcoming talk at a CP conference about his podcast, a podcast about his favorite musician, Prince.

chris tweets he is talking about how he is recording and editing his podcast while sharing stories of his favorite guests and episodes, zach asks who his audience is and states that can be helpful in deciding what to share. chris tweets his audience is people with cp, friends and families and healthcare professionals

chris explains his podcast is on his favorite musician, prince. he is going to explain how prince inspired him to put his voice out there and talk about what he loves. i shared i felt prince would love that and that's what he is all about.

Finally, talk turned to something that is a struggle for many, especially during quarantine, staying on track.

erin tweets staying on task is her biggest struggle, zach tweets he has a similar issue due to him jumping from task to task, he needs to remind himself to focus on one thing, erin tweets she makes daily goals and tries to remove distractions, zach tweets he is working at the library to remove distractions

This brings us to our Extend-The-Conversation Question inspired by Chris’s podcast: What is your favorite Prince song? Share your answers in the comments!

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

-Devin

#CPChatNow Recap- 9/9/2020

Posted on September 15, 2020 by devinaxtman

This past week in #CPChatNow was bustling as always. Members discussed personal accomplishments, COVID restrictions in Australia, good deeds, and what social media platform they like. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we would love to congratulate #CPChatNow mama bear, Erin, on her acceptance to a Master’s program:

erin tweets that she was accepted to the sacred theology master's program she applied to. zach wishes her congratulations and asks her to make time for #cpchatnow

#CPChatNow has had a member joining us from Australia. AcquiDis detailed COVID restrictions in place in the land down under.

acquidis detailed covid restrictions from australia. she tweeted in melbourne there is an 8-5 nightly curfew

acquidis tweets masks are mandatory outside the home with many dying in aged care facilities, she tweeted there are $1652 fines per offense of not wearing a mask or breaking curfew

Next, talk turned to good deeds as I shared the story of my bus driver taking me to the train station at the end of her route. Members shared good deeds others had done for them or they had done:

zach asked members what a good deed someone had done for them or they had done for someone else. zach shared he worked all six days his work was open to cover a staff shortage, erin tweets she send a friend a custom wedding card

Finally, Zach and Chris tweeted about what social media platform they were most active on:

chris and zach tweet about what social media platforms they are active on. zach tweets he is not active on linkedin, but has not been active. he mainly uses twitter and facebook. zach tweets he likes facebook for people he already knows and twitter is better for meeting new people, chris tweets he uses facebook every day and uses twitter to interact with celebrities.

This brings us to our Extend-The-Conversation Question: What is your favorite good deed you have ever done or someone else has done for you? Please share your answers in the comments!

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

-Devin

#CPChatNow Recap- 08-12-2020

Posted on August 18, 2020 by devinaxtman

This past week in #CPChatNow was bouncing as always. Members discussed adventurous things they had done in the last week, features of architecture, and aspects of their CP they have had to reconcile. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach asked members what adventurous things they had done in the last week. Members tweeted various things that really are not that adventurous, but seem adventurous and risky in this COVID pandemic.

zach says his last few days have been adventurous with a fall at a new library branch and he signed up for the race across ohio. he tweeted that he was ultimately fine after the fall

chris tweeted she got her bacolfen pump refilled. heather tweeted she got an MRI that is rescheduled and she found what she needed at canadian tire

Next, my friend who is an architect happened upon #CPChatNow and we discussed my preference of ramps versus lifts.

i quote tweeted a thoughts of dog tweet proclaiming that stairs are ridiculous. my architect friend asked if i prefer a ramp or lift stating ramps take up space where lifts save space but are ugly and hard to use. i tweeted i prefer ramps because i can use them independently and not get stuck

Finally, Zach asked members what they had struggled to reconcile with their CP.

zach asked what parts of cp people had a hard time reconciling.

Members discussed various difficult parts of reconciling their CP such as other’s perception and physical difficulties:

zach shares he used to be embarrassed about people being different, but regrets from high school allowed him to be ok with being different, chris tweeted they don't tell you about the pain and tweeted she is thankful about her pump, I tweeted I felt like I needed to behave a certain way like walking instead of using my wheelchair

This brings us to our Extend-The-Conversation Question inspired by Chris. What would you tell your younger self about CP? Please share your answers in the comments and join us each Wednesday at 8 Eastern at #CPChatNow.

-Devin

#CPChatNow

Online community for those with cerebral palsy!

Tag Archives: cerebral palsy

#CPChatNow Recap- 12/23/2020

#CPChatNow Recap- 12/9/2020

#CPChatNow Recap- 11/25/2020

#CPChatNow Recap- 11/11/2020

#CPChatNow Recap- 10-28-2020

#CPChatNow Recap- 10-14-2020

#CPChatNow Recap- 9-30-2020

#CPChatNow Recap- 9/9/2020

#CPChatNow Recap- 08-12-2020