#CPChatNow Recap- Reflecting Back and Looking Forward Focus Chat

This past week in #CPChatNow was especially lively as we celebrated #CPChatNow’s 4th birthday!  We decided to do a focus chat with various questions focusing on changes in member’s lives, questions about #CPChatNow, and a discussion about #CPChatNow’s future.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this special recap.

The first question focused on what has changed in members’ lives in the last four years.  Members shared many things, but it was interesting that many members had common changes:

Zach asking what has changed over the past 4 years. I answered with some changes including a master's degree, girlfriend

Blemi discussing a new job and boyfriend when talking about changes. Seth discussing cruises and burying his grandpa

The next question was about how members had heard about #CPChatNow.  Members shared various things such as discovering it on their timeline to seeing CP celebrities like John Quinn tweet about it:

Hannah tweeting that #CPChatNow showed up on her timeline

Me stating that I stumbled on #CPChatNow in a search, but I saw John Quinn tweet it

Zach also shared the story of the creation of #CPChatNow.  A collaboration between John Quinn and @HandicapThis.

Zach sharing story of #CPChatNow's creation

The next question related to specific questions or conversations that have stuck out to members.  Hannah shared the long running #CPChatNow joke of the story when someone asked if her CP was caused by getting ran over by a train:

Hannah tweeting the train conversation is her favorite #CPChatNow conversation

Jen tweeted about the focus chat with @The_CP_Swagger and Hunter Gandee who has made national news by carrying his brother with CP on his back to raise awareness:

Jen tweeting her favorite chat was with CP Swagger

Zach chimed in with the exercise chat led by Erin while I said the dating or accessible gaming ones:

Zach and Devin discussing their favorite conversations

Members also mentioned liking that the conversations in #CPChatNow tend to happen organically and do not feel forced:

Members discussing the joy that CPChatNow conversations tend to happen organically

Finally, the last question in the Focus Chat was regarding who members would like to see be a guest on a future focus chat.  Members were consistent in requesting Micah Fowler of Speechless fame.

Jen tweeting that she would like to see Micah Fowler on a future chat

Now this brings us to our next Extend-The-Conversation question and I will use #CPChatNow’s fourth birthday as inspiration.  What has changed for you in the past four years and what would you like to see in the next four?

This week's extend-the-conversation questions asks "What has changed for you in the past four years and what would you like to see in the next four?"

Answer in the “Comments” section.

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#CPChatNow Recap- 11-22-2017

The chat before Thanksgiving was very eventful as members talked about moving their impacted side(s), difficulty with insurance companies, inaccessible houses during the holidays, and more.  This is #CPChatNow Co-Host, Devin Axtman, and I will be taking you along for this week’s recap.

We begin this week’s recap with Rachel and I discussing having to purposely focus more on moving our impacted side(s):

Rachel and I discussion about movement on our impacted side

Next, Chris and Zach discussed the difficulties of dealing with insurance companies and the added frustration that comes with knowing the proposed treatment would save money in the long run:

Chris discussing frustration with getting her asthma treatments covered

Finally, much of the talk in the chat was surrounding member’s holiday plans.  Talk soon turned to accessibility issues members had while visiting family and strategies they had to deal with them:

Paul and Zach also discussed family member’s houses with stairs and sliding on their butts to go down them:

Paul and Zach discussing sliding down the stairs on their butts

This brings to our Extend-The-Conversation Question: What are some out of the box solutions you have used in inaccessible situations?  Please share your answers in the comments and join us every Wednesday at 8 Eastern at #CPChatNow on Twitter.

The extend-the-conversation question with a picture of a box with a green arrow in the center

-Tweet you later

Devin

 

#CPChatNow Recap- 11-8-2017

This past week’s #CPChatNow Twitter chat was eventful as always.  Members discussed fixing accessibility problems at work, the helpfulness of blogging, and the independence that something like a parking tag can bring.

A continual theme on #CPChatNow has been working with employers on addressing accessibility related issues.  Zach relayed a story of working with his employer to address a folding mat over a carpet:

Zach relaying a story of working with his employer to correct a folding carpet mat

Next, Lindsey and Zach discussed the importance of blogging in their lives. Lindsey and Zach discussed how blogging is a way to express their thoughts to the world:

Lindsey and Zach discussed how blogging is a way to express their thoughts to the world

Zach and Lindsey also discussed the difficulty of caring what others think:

Zach and Lindsey discussing the difficulty of getting over caring what others think

Next, talked turned to the mixed feelings that using an aid such as a wheelchair, cane, or accessible parking placard can bring:

Zach, Lindsey, and Devin talking about the mixed feelings that come with using an aid that increases independence

Zach and Veronica discussed the assistance that having an accessible parking placard can provide when navigating the giant falling hazards that are known as parking lots:

Zach and Veronica discussing the aid that an accessible parking placard can be when navigating parking lots and the benefits of living in Arizona

This brings us to our Extend-The-Conversation question: What tools related to your CP give you mixed feelings?

Please share your answer in the comments!

Tweet you later

-Devin

#CPChatNow Recap- 10-25-2017

#CPChatNow had a lively chat as always this past Wednesday. Members talked about changing job duties, football teams letting teens with CP score, and whether intended good deeds are necessary and appreciated. I am your Co-Host, Devin Axtman, and I will be taking you along on the ride for this week’s recap.  Buckle up!

We’ll start this recap with Chris discussing her feelings surrounding changing job duties and the disability accommodation process at work:

Chris discussing recently amended job duties due to illness

Next, talk turned to a recent story out of New Jersey where a 7th grader with CP scored a touchdown when the other team kneeled.  Zach and Timmy both bemoaned the other team’s lack of effort:

Zach and Timmy bemoaning the lack of effort on a 7th grader with CP's touchdown

However, Zach and I also brought up Reese’s feelings in the matter:

Zach and Devin discussing how Reese's feelings were the number 1 priority in the touchdown

Finally, talk turned to helpful good deeds that people think they are doing related to your CP, but that are actually patronizing and harmful.  Zach started the conversation by recalling a story about someone repeatedly asking if he was alright while walking:

Zach asks about patronizing good deeds and discusses a story about someone repeatedly asking if he is OK

Zach and I discussed people pushing me in my wheelchair without me asking, something that happens frequently:

Zach and I discussing people pushing me in my wheelchair without asking while joking that all I have to do is avoid hills

Omens discussed frustration regarding being escorted to the school office due to dizziness and feeling her wishes were not totally respected.

Omens discussing her frustration about being escorted to the office after experiencing dizziness

This brings us to our Extend-The-Conversation Question: What are some not helpful things people do to help with your CP?  Please share your answers in the comments.

Tweet you later!

-Devin
A cream colored notebook paper background. Black text that says: What are some not helpful things people do to help with your CP? A red ribbon with red text that says NOT HELPFUL is in the middle of the page while the multi-colored #CPChatNow logo is in the bottom left hand corner

#CPChatNow Recap- 10-4-2017

This past week was an exciting week in #CPChatNow as Zach welcomed a nephew, #CPChatNow welcomed new members, and members discussed using a cane and stretching.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

However, in a bit of Breaking News outside of the chat, our #CPChatNow Co-Host, Zachary Fenell, finished his marathon on Sunday.  Kudos to Zach for following a dream and having the courage to see it through!

Zach announcing he finished his marathon in 11 hours, 40 minutes, and 31 seconds

Also, congratulations are in order to Zach as he welcomed a nephew last week:

Zach announcing he welcomed a nephew this week with Ryan offering congratulations

Blemi, Hannah, and Zach discussed the independence and confidence that regular use of a cane can bring:

Blemi and Hannah discuss the increased independence and confidence that using a cane can bring

#CPChatNow welcomed a new member this week as Chandler Gobin joined the chat.  She discussed wanting to do a 5k with Zach and Zach discussed his preparation including regular exercises, training, and range of motion.

Zach and Chandler discussing preparations for a 5k including regular exercises, training, range of motion exercises. Chandler reports she forgets to stretch

Chandler and Rachel discussed spasms that Chandler has been experiencing. Rachel offered advice of checking her IT band and hip flexors while joking she should get a medical and therapy degree with all of her PT and OT

Chandler discussing her spasms while Rachel suggests checking her IT band and hip flexors

Rachel jokes she should get an honorary medical and therapy degree with her 20 years of PT and OT experience

Rachel’s Tweet brings us to our Extend-The-Conversation Question: What “awards” do you feel you should win from having CP? My award? The Straightest Legs in My Youth Gymnastics Class (I couldn’t bend them).

A picture of a gold trophy centered on a white background. There is black lettering of What "awards" do you feel you should win from having CP? above the trophy with the multi-colored #CPChatNow logo on the bottom left hand corner

Tweet you later!

*Devin

#CPChatNow Recap- 9-20-2017

Last week was an eventful week in #CPChatNow as always!  Members discussed searching for their medical records, the return of the TV show Speechless, their high school accommodations, and the importance of self-advocacy.  This is #CPChatNow Co-Host, Devin Axtman taking you along for the ride on this week’s recap.  Buckle up!

The chat started out on a light note as Mindy discussed the difficulty of finding medical records and Blemi shared in the frustration:

Mindy expressed frustration she can't find her medical records. Blemi stated she found her's with a chocolate stain

Next, the chat turned to #CPChatNow’s favorite TV show, Speechless! Speechless returns Wednesday at 8:30 Eastern! Zach shared a fantastic article covering the show and we discussed the director of Speechless saying a goal was to lose the shackles of the “dreaded disability factor”:

Zach and Devin discussing the return of speechless and the director's thoughts

Talk then turned to high school accommodations and how much members were involved in their own accommodations. Blemi mentioned that her small town in Canada just did the bare minimum:

Blemi and Zach discussing high school accommodations in Canada. Blemi said there is no national standard and her small town did the bare minimum

Blemi reported that her school just exempted her from PE and allowed her to simply write papers.  Simply excusing something rather than accommodating for disability is definitely not the best response:

Blemi reported she wrote papers instead of doing PE

Christine and Zach discussed their evolution from being mad at being included in IEP meetings to taking self-advocacy as a point of pride:

Christine and Zach discussing their evolution from being shy to feeling prideful regarding their disability

Omens also discussed the occasional difficulties of self-advocacy, but rejoiced in the good moments when you find an ally that helps you like their stat teacher:

Omens discusses difficulties with self-advocacy and her stat teacher being her ally

This brings us to our Extend-The-Conversation Question: What memorable stories do you have surrounding CP and self-advocacy?  Please share your answer in the comments!

Tweet you later!

Devin An oranage cat in the lower left hand corner with a shadow of a lion. There is white text saying Extend-The-Convrsation and What memorable stories do you have surrounding CP?

#CPChatNow Recap- 9-6-2017

This past week was an eventful week in #CPChatNow as always.  Members discussed hurricanes, new semesters and houses, and difficulties with transportation. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.  All aboard!

First, we would like to share some good news.  Longtime #CPChatNow member, Erin, is OK following Hurricane Irma.  We discussed her hurricane plans last week:

Erin discussing her hurricane plans with caregivers, food, and water.

Perhaps not surprisingly with the time of year, much of #CPChatNow was focused around school.  Omens joined #CPChatNow to discuss fatigue and school accommodations.

Omens discussing her fatigue at school with accommodations such as an extra set of books, unlimited absences, and ability to leave class early

She also talked about her school providing students laptops to take notes.  This is a good example of Universal Design helping everyone:

Omens discuss that she has a laptop to take notes

Zach relived college by sharing his perceived benefits towards living on campus:

Zach and Jen discuss how Zach living on campus allowed him to learn how to avoid conflict

Next, Jen has discussed in previous weeks how she has been adjusting to her new house.  She shared that she has a device that helps turn on ceiling fans and lights, but wondered if there was a similar device for the bathroom:

A picture of a white remote with gray buttons for turning on fans and lights on a table along with a Jen tweet asking if similar devices exist for bathrooms

Finally, Hailey joined #CPChatNow to let us know that she started grad school. However, she shared her frustration with lack of reliable transportation:

Hailey reporting that she has returned to grad school, but shared her frustration with lack of reliable transportation

I will use Hailey’s frustration about transportation for this week’s Extend-The-Conversation Question: What is the worst societal obstacle when it comes to your CP?  Please share your answers in the comments!

Join us every Wednesday at 8 EST on Twitter at #CPChatNow.

Tweet you later-

DevinA black wheelchair in front of gray stairs with blue text on a gray background of the Extend-The-Conversation question. The Multicolor #CPChatNow logo is in the bottom right hand corner