#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


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