#CPChatNow Recap- 08-22-2018

Participants in the weekly cerebral palsy Twitter chat #CPChatNow had much on their minds Wednesday, August 22nd, 2018, a fact apparent by the conversation’s flow. I am co-host Zachary Fenell, tasked to arrange the various topics discussed into one concise recap. A question asked during the previous week’s chat resurfaced sparking early dialogue.

#CPChatNow participants discuss when they realized they were different from their siblings.

New #CPChatNow participant Molly Adamson asked about others’ experiences with able-bodied siblings. Heather DeYoe recalled noticing her disability for the first time when she needed surgery but her sister did not. Meanwhile my answer rerouted the chatter.

#CPChatNow participants discover a common bond, going to preschool for multiple years.Blemi and Jen related to my reply. I explained I noticed my CP because I went to AM kindergarten while my two brothers attended PM kindergarten. I attended AM kindergarten so in the afternoon I could go to preschool to receive physical therapy. My third year in preschool! Blemi mentioned spending three years in kindergarten and Jen spent three years between kindergarten and early childhood. All while my brothers enjoyed sleeping in before their PM kindergarten classes! Sleep actually surfaced as another subject matter.

Members in the #CPChatNow community discuss sleeping, pain, and mattresses.Recently I changed how I sleep on my bed because I kept waking up with back pain. Switching where I lay my head proved easier than trying to flip my mattress. My remarks intrigued co-host Devin Axtman who also sometimes has back pain after sleeping. I said a worn mattress could cause those problems but the best mattresses end up costing more money. Blemi anticipated the day she can get a bed where each side can move based on the person’s preference.

Later in the chat Devin raised an important issue.

#CPChatNow participants discuss the crucial topic of emergency and disaster preparedness.Devin retweeted Texas Tribune’s story covering disaster and emergency preparedness. I admitted to not planning, although I know I should. Knowledge I gained years ago when I connected disability advocate Anita Cameron with Handicap This, leading to a three-part guest blog examining emergency preparedness. You can still read those posts.

Unlike Devin and I, participant Jake Jordan said he makes an effort to stay prepared. How about you? If like Devin and myself, due yourself a favor and answer today’s extend-the-conversation question. “How can you get started with your emergency preparedness planning today?” Leave your reply in the comments.

Make sure to join the conversation on Twitter too! We welcome both new faces like Molly and ones from past #CPChatNows. That includes MIA co-host Jorge Otezia who happened to drop in on the 22nd.

Zachary warmly greets a familiar face back to #CPChatNow, Jorge!

This week's extend-the-conversation question asks, "How can you get started with your emergency preparedness planning today?"Come say hi too, Wednesday at 8pm ET on Twitter. Just use the hashtag in your tweet to enter our community. Or, you can partake by answering the extend-the-conversation questions asked here in the recaps. Again, this week’s question asks “How can you get started with your emergency preparedness planning today?” Respond below.

Until next time, remember. Don’t blend in. Blend out!



#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- 08-08-2018

A serious tone emerged during the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, August 8th, 2018. I am co-host Zachary Fenell, hopeful you will forgive me for the tardy recap. You continuing to read I will interpret as forgiveness. Thank you.

Going into the evening I personally felt rather exhilarated.

#CPChatNow participants differing attitudes towards disabilities.Towpath Marathon’s Facebook page sharing a post I shared fueled my elation. Particularly, their comment “We’re looking forward to seeing Zach in two months!” Like I explained to our community, I feared the staff might adopt a different attitude, “Not again!” After all, I needed almost 12 hours to complete the 26.2 miles the previous year.

My fellow #CPChatNow co-host Devin Axtman remarked how life would prove easier if everyone demonstrated Towpath’s welcoming attitude. I asked “What do we have to do to make that happen?” Devin thinks the answer relies in educating children. Adding to his point I emphasized the importance behind consistent education, oppose to a special assembly here and there. What do you think? Answer for the week’s extend-the-conversation question, “How can we help others obtain a more welcoming attitude towards disabilities?” Leave your answer in the “Comments” section.

Regarding answering extend-the-conversation questions, I raised the prior week’s question.

#CPChatNow regular Rachel discusses what goes into her decision on whether to use a mobility aid or not.Amidst the August 1st, 2018 #CPChatNow recap Devin posed the question, “What goes into your decision when deciding to use a mobility aid?” #CPChatNow regular Rachel explained her decision making process, saying sometimes she benefits from not using a cane. but remains tempted to use one to visually show others a need for space with her movement. I replied saying a cane seems to make other people more accepting. Otherwise they tend to stare and think you are just a drunk. Sentiments Rachel related to.

#CPChatNow participants talk about their experiences with falls.Rachel echoed the idea people mistaken individuals with cerebral palsy as drunks. She suspects others avoid helping her up due to this. Jeni Briere noted the danger in said scenario.

Jeni wonders how many people have suffered because bystanders mistake the individual for being intoxicated.

Jeni recalled a famous Welsh poet Dylan Thomas who died in a diabetic coma because others mistook him for a drunk.The thought left Jeni pondering how many more suffer because they appear intoxicated. Let us not end on such a somber note, though. During the August 8th chat, we announced our August 2018 Google Hangout date.

#CPChatNow's August 2018 Google Hangout will happen Thursday, August 23rd.This week's extend-the-conversation question asks, how can we help others obtain a more welcoming attitude towards disabilities?Besides marking your calendar, also remember to answer the week’s extend-the-conversation question. “How can we help others obtain a more welcoming attitude towards disabilities?” Respond in the comments below.

Until next time,



#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.