#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

Finally, talk turned to the difficulty of ironing with CP:

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 Eastern!

-Devin

Advertisements

#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

 

 

 

#CPChatNow Recap- 5-23-2018

This past week in #CPChatNow was bustling as always.  Members talked about recent hikes, riding bikes, and physical therapy being fun.  This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I wanted to highlight a tweet from a member about something that occurred outside of the regular #CPChatNow window of 8-10pm eastern time each Wednesday.  Regular member, Timmy, shared a photo of a weekend hike:

A picture of Timmy standing by the Mount Everett summit sign

Timmy showed that #CPChatNow and people with CP are doing things all of the time!

Riding bikes was a common theme in this week’s chat after Zach shared a story about a man excelling at adaptive cycling.  Zach and Linds chatted about their history of riding bikes:

Zach and Linds talked about bike riding. Zach said he did not have the core strength to get beyond training wheels. Linds tweeted she used to ride and sometimes fell off, but has been unable to due to health reasons and no time to recover

The bike conversation went in another direction as Zach and I talked about how our physical therapists thought of fun ways to get us involved in physical therapy (PT):

Zach and I tweeted about sports being a part of physical therapy. I tweeted sports were a big part of therapy and zach expressed that he wished sports was a bigger part of his therapy

I tweeted a milestone in physical therapy was running around the bases. Zach recalled getting in catcher position to catch bean bags and the challenge of keeping his balance

This brings us to our extend-the-conversation question, “What did your therapists do to keep you interested in therapy?”

A picture of a baseball stadium in the background. Extend-The-Conversation Question in white with the extend-the-conversation question at the top of the picture. The white #CPChatNow logo at the bottom

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

#CPChatNow Recap- 5-9-2018

This past week in #CPChatNow was jumping as always.  Members talked about being ambidextrous, learning to fall, and rebelling against CP.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

Zach and Grace talked about being ambidextrous and whether that translated to falling to one side or the other:

Zach and Grace talking about whether being ambidextrous translated to falling more on one side. Grace tweeted she is, but tends to fall on her right side

Members then talked about learning to fall.  Stacey expressed surprise that was a thing, but many members such as Zach and Hannah tweeted about learning to fall:

Zach and Stacey tweeted about learning to fall. Stacey said she had never learned to fall, but she falls on her stronger side.

Zach and Hannah tweeted about different techniques regarding learning to fall in PT:

Zach tweets about learning to fall on his dominant side. Hannah tweets she learned ways to catch herself. Zach tweeted he went to private PT

Zach, Hannah, and I tweeted about having private PT and our parents sweating over payment details:

Zach, Hannah, and I tweet about having private PT when younger and not thinking about the payment details

Next, talk turned to an interesting question Zach had.  He asked members about the first time they could remember rebelling against their CP.

Zach asked about the first time members rebelled against their CP. Zach tweets about not leaving classes. Jen tweeted about grabbing things with her claw rather than asking for help

Hannah tweeted about moving to Nashville and Zach tweeted about his parents being unsure about him competing in his first marathon:

Hannah tweets about rebelling by moving to Nashville. Zach tweets about doing the marathon and reassuring his parents

This brings us to our Extend-The-Conversation question.  Zach had all of the good questions this week, so I will ask his question again for those who couldn’t participate on Twitter: “What was the first decision you made to rebel against people’s concerns over your CP?”  Share you answers and the results in the comments

Extend-The-Conversation-Question in black text at top. A grey person standing with hand up to his chin as if thinking with 3 red arrows going right, straight, and left. What was the first decision you made to rebel against people's concerns over your CP?What was the first decision you made to rebel against people's concerns over your CP? What was the first decision you made to rebel against people's concerns over your CP? is below in black text. Multicolor #CPChatNow logo in left hand corner

 

 

#CPChatNow Recap- 4-25-2018

The past week in #CPChatNow was humming as always.  I’m #CPChatNow co-host, Devin Axtman, taking you along on this week’s recap.

We start the recap with some good news from Timmy!

Timmy is his school's outstanding neuroscience student

Next, talk turned to a familiar topic with CP, falls.  Rachel reported she had a fall recently and the importance of not falling on her right side.  It is a fact of life with CP that you learn how to fall.

Rachel's left side is banged up from a fall that could have been worse. Wum Gin asked if Rachel ever breaks a fall with her left side. Rachel replies that is a bad idea due to no reflexes

Next, talk turned to sick days and benefits (or lack-thereof at work) along with the difficulties of working for a small business.

Rachel earned a sick day that she might use next week. Zach replied his position does not have benefits

Zach and Rachel continued tweeting about sick days. Rachel tweeted she's not covered under ADA due to her employer being a small business

Finally, talk turned to taking the staircase at events like sporting events and concerts.  The consensus was to only get up if necessary and not to go alone:

Shira tweeted about going the theater and dealing with a tricky staircase. Rachel agreed she hates getting up

Zach agreeing that he does not like going to stadiums by himself but he did go to a game at Wrigley field by himself

This brings us to our extend-the-conversation Question: Do you avoid doing things in public alone due to your CP?

The Extend-The-Conversation question: A red background with a white #CPChatNow logo. A picture of stadium stairs without a railing with Do you avoid doing things in public alone due to your CP? on the bottom

Share your answers in the comments.  Tweet you later!

-Devin

#CPChatNow Recap- 4-11-2018

This past week in #CPChatNow was busy as always.  Members talked about birthdays, lost family members, and writing books. This is #CPChatNow Co-Host, Devin Axtman, taking you along for this week’s recap.

First, we have to wish a happy birthday to Shira!  She talked about her feelings upon turning 17:

Shira discussing her feelings upon turning 17, sometimes feeling old, sometimes feeling like a young girl

Talk then turned a memorial service at my university and Zach shared it was his late aunt’s birthday:

Zach pointing out that today was his late aunt's 63 birthday. Shira stated it was OK to remember loved ones. Zach shared his aunt was a pediatric nurse that helped his family

Zach and I discussed how his aunt’s occupation as a pediatric nurse helped his family with his CP diagnosis:

Zach and I discussed how his aunt's occupation as a pediatric nurse helped his family with his CP diagnosis

Finally, Zach talked about going to author events in preparation for writing his next book, a story on his journey from not participating in PE to completing a marathon this past year:

Zach and Shira talking about Zach going to author events in preparation for his new book on his journey to being a marathoner

This bring us to our Extend-The-Conversation Question: If you wrote a book about your life, what would be your topic?  Please share your answers in the comments!

Tweet you later!

-DevinA notebook on a brown table with a pen. Extend-The-Conversation Question and If you wrote a book about your life, what would be the topic? are in white above the notebook. The multicolored #CPChatNow logo is in the bottom lefthand corner