#CPChatNow Recap- 9-12-2018

#CPChatNow was rocking as always last week.  Members discussed the upcoming season of Speechless, the importance of senses, and what character they would be in a book.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members talked about the upcoming season of Speechless.

Zach and Blemi discussed the upcoming season of Speechless. Blemi states she stopped watching it in season 1. Zach said he can relate sometimes while not at others.

Next, Hannah shared her excitement about new glasses.  She shared how much easier life has been since regaining her vision:

Hannah shares her excitement about new glasses and increased vision. Zach shared his reliance on vision for walking and Hannah concurred

Zach and Hannah discussed the loss of different senses and Hannah shared that she would likely deal OK with losing her hearing because of her knowledge of ASL:

Zach and Hannah discussed the loss of different senses and Hannah shared that she would likely deal with losing her hearing because of her knowledge of ASL

This brings us to our extend-the-conversation question, “Which of the five senses do you feel is the most important?” Leave your answer in the “Comments” section.

Continuing on, Zach asked what book people would add themselves to and how they would change the story.

Zach asks what book members would add themselves to. Ayden shares the Count of Monte Cristo to support Dantes

Zach tweeted about being a character in To Kill A Mockingbird and sticking up for Boo Radley:

Zach tweets about being in To KIll A Mockingbird and helping Boo Radley

Extend the Conversation Question in black. A graphic with the five senses in circles around a brain with a drawing of a nose, mouth, ear, hand, and eye. Which of the five senses do you feel is the most important? on the bottom with the multi-colored #CPChatNow logo on the leftMake sure to keep the conversation going by answering the week’s extend-the-conversation question. Again that question asks, “Which of the five senses do you feel is the most important?” Leave your answers below!

-Devin

 

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#CPChatNow Recap- 8/29/2018

This past week in #CPChatNow was bustling as always.  This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Zach announced that he is going to do a 5K as a warm up to another marathon in October:

Zach announcing he has registered for the Helping Hands Heroes 5K which benefits the hospital where he had surgery

Members also talked about doing a Real Housewives of CP program:

Rachel tweeted there should be a real housewives of CP program. Heather said for enough money she could learn to be catty. Zach shared a Ted Dibase gif

Jen and Hannah talked about Hannah’s dog Levi walking alongside her walker at PetSmart:

Jen asked how Levi is doing with the walker training. Hannah said they haven't done it again

Finally, Zach talked about a moment at work when he accidentally pushed over a book cart a la WWE wrestler Braun Stroman:

Zach talks about accidentally flipping over a book cart at work.

Please join us every Wednesday at 8 PM Eastern on Twitter at #CPChatNow!

#CPChatNow Recap- 8/15/2018

#CPChatNow was bumpin this past week as usual.  Members talked about making Palsy playlists, running, their startle reflex, hand movement, and sharing their CP with family members.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

We start the recap with Rachel sharing her awesome palsy playlist with songs related to movement:

Rachel shares her Palsy playlist with Zach pointing out Born This Way is a perfect song

Next, Rachel, Zach, and Pickman discussed their challenges with running and frustration with not being able to do more:

Rachel, pickman, and Zach discussing their frustrations with running, not being able to do more, and dropfoot

Next, Pickman discussed feeling jumpy and Rachel told him about the dreaded Moro startle reflex:

Pickman and Rachel discussed the Moro/Startle Reflex and difficulty getting information from doctors

Next, Ciarán noted that it is becoming easier for her to move the fingers in her right hand. Rachel bemoaned the lack of movement in her right hand while coming up with a great metaphor of using her right hand being like picking up cereal with a fork:

Ciaran states it is easier to bunch the fingers in her right hand while Rachel bemoans the use of her right hand

Ciaran talks about flailing around with her right hand on the bus while Rachel compares using her right hand like using a fork to pick up cereal.

Finally, talk turned to how much (if at all) families talked about member’s CP. Molly stated her family did not talk to her brother about her CP and asked when other’s families did. I shared age appropriate things my parents would say to tell other kids:

Molly asks when other's parents talked about their disability. I shared my parents were honest and would tell me to say things like, "My muscles work, just not as good as yours"

This brings us to our Extend-The-Conversation Questions inspired by Molly’s tweet: When did your parents talk to your siblings about your CP?

A father walking with his children up a dirt road. One child is pushing a red wagon and the boy holding his father's hand. The extend the conversation question When did your parents talk to your siblings about your CP? is above them in yellow wording, the multicolor #CPChatNow logo is to their right, extend-the-conversation question is below them in red letters

Please share your answers in the comments and join us each Wednesday at 8 Eastern at Twitter on #CPChatNow

#CPChatNow Recap 8-1-2018

This past week in #CPChatNow was a banger as the kids say.  Members talked about topics ranging from receiving hugs and using mobility aids abroad to sharing their accomplishments in school plus more.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Timmy shared his latest accomplishment in graduate school, a cool presentation that I still don’t understand even after an explanation tweet.

Timmy standing in front of his presentation

Timmy explaining his presentation

Blemi talked about how she doesn’t like hugs because she sometimes almost gets knocked over:

Blemi discusses how she doesn't like hugs

Finally, Hailey shared she is going to Ireland and is thinking about whether to use crutches or a cane.

Hailey talks about deciding whether to use a cane or crutches in Ireland

Hailey expressed concern about the rocky terrain in Ireland

This week's extend-the-conversation question asks, "What goes into your decision when deciding to use a mobility aid?"This brings us to our extend-the-conversation question: What goes into your decision when deciding to use a mobility aid?

Answer with a comment below. Then remember to join our live Twitter chat Wednesday at 8pm ET.

-Devin

#CPChatNow Recap- 7-3-2018

There was a bit of a change to #CPChatNow this week.  The chat was moved to Tuesday to accommodate the 4th of July.  However, the chat was still busy as members talked about how often they think about CP, burning calories, and doing chores.  This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Talk started with whether members thought about their CP regularly.

Zach and Chris talked about if CP is constantly on their minds. They both agreed they think about it, but not overtly

Zach and Rachel talked about the impact (or lack-thereof) of CP on burning calories:

Rachel and Zach talked about whether CP impacted their calories burned, particularly when it came to posture

Next, talk turned to chores that are more difficult because of CP.  Members quickly agreed that making the bed can be very difficult with CP:

Jeni and Zach talking about the difficulty of making the bed

Ironing remained another chore discussed:

Zach and Wum talked about the difficulty of ironing and folding with CP

Zach asked how often members ironed. Devin and Chris talked about their infrequency of ironing

This brings us to our extend-the-conversation question: What is the most difficult chore for you with CP?

Share your answers in the comments and join us tonight at 8 pm eastern!

-Devin

#CPChatNow Recap- 6-20-2018

#CPChatNow was brisk this past week. Members discussed competing as a Paralympic athlete, baby announcements, stubbornness, and the difficulty of trying to convince others to use mobility devices. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we’re starting the recap with some happy news! The creator of #CPChatNow, Tim Wambach, from Handicap This just welcomed a baby girl. Congrats Tim!

Zach announcing Tim welcoming a baby

Picture of Tim with his baby girl

Also, #CPChatNow welcomed a new member in Ayden Jent. Ayden is a Paralympian, two-time World Championship US team member, and Para Pan-Am silver medalist.

Ayden Jent says hi to CPChatNow. He is a 2015 Para Pan Am silver medalist and runs the 100 and 200 meters

Zach and Ayden talk about halfmarathons. Ayden tells Wum he prefers longer distances and has mild CP

Next, talk turned to whether members had talked loved ones into using a mobility device. Zach and Hannah talked about coming to terms with using their respective mobility devices:

Hannah and Zach talking being hesitant to use crutches and walkers. Zach said he was hesitant to use his cane for his marathon

Discussion then turned to mobility aids being tools for independence:

Devin discussed his wheelchair being a tool for independence, but that mindset being a transition. Zach tweeted he wished this thought process could be embedded into stubborn individuals

Hannah and I then talked about how the experiences of CP make adjusting to a mobility device easier:

Devin tweets about how adjusting to a mobility device is different due to having to deal with physical issues that others may not have

This brings us to our extend-the-conversation question: What has been your toughest form of disability related adjustment?  Please share your answer in the comments! A sky blue background with a person rolling a boulder up a hill outlined in black. Extend-The-Conversation Question centered in white text at the top. What has been your toughest form of disability related adjustment? in the middle and #CPChatNow logo in bottom left hand corner

 

#CPChatNow Recap 6-6-2018

#CPChatNow was chipper this past week as members talked about things such as teaching their friends, what they would like their legacy to be, and whether they prefer moving or sitting activities.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, #CPChatNow would like to note the passing of someone who meant a lot to many in the cerebral palsy community, Dr. Karen Pape.  Dr. Pape was a clinical neuroscientist and author. You can find her TED Talk here. She also did a focus chat for #CPChatNow.  You can find the recap for the focus chat here.

Zach tweeting about Dr Pape's death on June 2nd

Next, Amanda shared a story of a friend helping a man using a walker leave a restaurant.  This is a great example of knowledge of disability expanding knowledge and empathy.

Amanda shared a story of a friend helping a man using a walker leave a restaurant.  She shared a story of the friend saying knowing Amanda has helped expand his knowledge.

Legacy soon became an emerging topic, sparked by Dr. Pape’s death mentioned earlier. Community members discussed the legacies they want to leave:

Members discussed the legacy they hoped to leave. Zach and I shared our thoughts. Rachel cautioned about doing too much for others

Continuing the widespread dialogue, members talked about whether they prefer activities that involve movement or activities that involve sitting.  The consensus was movement, but that a balance was necessary to prevent overwhelming fatigue.  Hot showers were a favorite as well.

Rachel prefer movement oriented activities where her muscles are engaged in active and passive stretch like yoga or taking a hot shower. Zach agreed on liking hot showers

Chris agreed with Zach and Rachel on need for moving activities, but talked about the need for a balance.

This brings us to our extend-the-conversation question: What are your go to activities to get moving?  Please share your answers in the comments!

Extend-The-Conversation Question in white at the top. What are your go to activities to get moving? in the middle with the #CPChatNow white logo. A person is standing in the middle of trees with their arm up

Tweet you later!

-Devin