#CPChatNow Recap- 06-14-2017

Wednesday, June 14th, 2017 participants who joined #CPChatNow experienced a stroll down memory lane. I am Zachary Fenell, a proud #CPChatNow co-founder and current chat co-host. Fittingly I receive the pleasure to recap the June 14th, 2017 chat. This should feel like writing a #CPChatNow history lesson!

Before delving into our history though, you might notice a certain someone missing from the highlights. Last week my co-host Blake Henry and I announced Devin Axtman‘s move to permanent co-host. He, Blake, and I will all work together to serve our community. Anyhow, Devin to celebrate his new promotion possessed special plans June 14th.

Devin shares he will be absent as he prepares to go to Disney World. Now, I am joking around about the reason for Devin’s visit to Disney World. I know he planned the trip months ago. The timing with his #CPChatNow co-host promotion just proved too tempting. I couldn’t resist the “I’m going to Disney!” joke.

Moving along, the previously mentioned stroll down memory lane’s catalyst came when some new faces emerged.

Christina joins #CPChatNow for the first time.Upon learning Christine Ruiz‘s newbie status, Susanne Kate Jones teased some hazing. Christine’s response indicated she will likely fit right in with our humorous bunch.

After #CPChatNow veteran Susanne Kate Jones teased hazing, newbie Christine Ruiz gives a response indicating she should get along with our community. Thankfully Christine caught onto the comedic tone behind Susanne’s remarks. Another newcomer surfaced a little past our second hour.

CerebralPalsySpeaks stumbles into #CPChatNow, fearing to have missed the chat. Quickly within the 50 minutes left CerebralPalsySpeaks grew intrigued by our community. Enter the question, “So, who started this lovely hashtag?”

CerebralPalsySpeaks asks who started #CPChatNow.Based off participants’ responses, I am glad CerebralPalsySpeaks asked. After all, every party involved in the origins deserves credit.

Susanne credits John W. Quinn for starting #CPChatNow.Rachel credits Zachary for starting #CPChatNow but he corrects he co-founded #CPChatNow along with John W. Quinn and Handicap This.Susanne credited Someone Like Me author John W. Quinn as the #CPChatNow originator. Meanwhile Rachel Folly gave said distinction to me. Both remained partially correct. John and I each explained we together with Handicap This founded the hashtag. I offered up the visual evidence, tweeting out the promotional image we used to promote the very first #CPChatNow.

Long-time #CPChatNow participant Hannah Pike recalls seeing the original promotional graphic I shared while we all discussed #CPChatNow's history.Long-time #CPChatNow regular Hannah Pike remembered seeing the image. She admitted letting shyness keep her away initially. That caused me to joke since the #CPChatNow train design shirt we sold last year extends back to a life experience Hannah once shared with us. The joke surprised Susanne who didn’t know #CPChatNow apparel existed.

In 2016 we at #CPChatNow held two shirt sales using Custom Cat. Proceeds went to Handicap This’ non-profit Keep On Keeping On Foundation. Between the two sales we raised $170 for KOKO. If interested in us relaunching the shirt sale, tell us!

Answer for the week's extend-the-conversation question "How did you learn about #CPChatNow?"Also why not contribute to the #CPChatNow history lesson? Answer for the week’s extend-the-conversation question, “How did you learn about #CPChatNow?” Respond by commenting below!

Until next time.

-Zachary

#CPChatNow Recap- Aging with Cerebral Palsy Focus Chat

On Wednesday, May 31st, 2017 #CPChatNow presented a much anticipated focus chat about aging with cerebral palsy. Interim co-host Devin Axtman and I (co-host Zachary Fenell) alternated asking the questions you in our community suggested. Questions which triggered vibrant conversation. Some highlights follow below.

Now any credible chat on aging with cerebral palsy requires individuals willing to discuss their personal experiences. Therefore to start the Q & A we asked participants comfortable doing so to share their ages. Majority in the group fell between mid-20s and mid-30s. Although a few elder-statespeople ranging in age from 40 to 55 chimed in too. Meanwhile the youngest participant remains amidst her final year as a teenager.

Once we established our participants’ credibility, we delved into our more substantial questions. Our second question addressed what to expect aging with cerebral palsy and how to handle said expectations.

The second question of #CPChatNow's Aging with Cerebral Palsy focus chat asks about expectations aging and how to deal with these expectations.Rachel expressed concerns related to every day wear and tear to the body, symptoms possibly worsening, and even new symptoms. In my personal response to the question I mentioned lacking resources for adults with cerebral palsy.

Co-host Zachary Fenell mentions compared to kids, adults with cerebral palsy possess less resources to help deal with CP.Turned out others also related to using older braces. Alena‘s reply particularly revealed an ill-fated perception viewing new orthotics as a “kid thing.” Concentrating more towards items we can control, Maysoon Zayid offered up hope.

Maysoon Zayid explains lifestyle changes she made in order to help lessen her cerebral palsy symptoms. Through lifestyle changes like practicing yoga regularly and avoiding animal products, preservatives, dyes, and caffeine Maysoon explained that her CP symptoms lessened. What about you? Your turn to add to the conversation! Answer for the week’s extend-the-conversation question, “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?” Leave your response in the “Comments” section.

Maybe similar to Maysoon, you benefited thanks to yoga. Actually, similar to Maysoon and others considering multiple people praised yoga during our “Aging with Cerebral Palsy” focus chat.

Newcomer to #CPChatNow Grace Lapointe also has had positive experience with yoga.John W. Quinn, one of the original #CPChatNow co-hosts, finds yoga helps with balance issues plus back and hip pain.#CPChatNow newcomer Grace Lapointe and a fellow #CPChatNow founding father John W. Quinn alike endorsed practicing yoga. All the praise left another newcomer Christine seeking advice for getting started.

Christine wonders about yoga and expresses concern about toppling over.Christine vocalized hesitation in getting started, nervous about toppling over. Participants rallied to encourage Christine. John and Maysoon both disclosed using assistance when first beginning yoga.

John W. Quinn and Maysoon Zayid talk about their beginnings with yoga.Alongside the yoga chatter, our set questions for the evening continued. Question three asked about others’ experiences and tips to make life easier. That led to Maysoon offering up an observation.

Maysoon Zayid notes an observation that many individuals with cerebral palsy forget aging impacts everyone.Similarly, John advised separating cerebral palsy from emerging health issues.

John W. Quinn advises to separate cerebral palsy from emerging health issues.Next the conversation transitioned to the biggest surprise and frustration to accompany aging.

Dwindling mobility and discomfort sleeping proved re-occuring answers from #CPChatNow participants when discussing the biggest surprise and frustration caused by aging.

A couple re-occurring themes appeared when community members named the biggest surprise and frustration accompanying aging. Those themes including dwindling mobility and discomfort when trying to sleep. Ending the night optimistically, John recognized the potential boost ekoskeleton braces could offer the cerebral palsy community in the future.

John W. Quinn believes ekoskeleton braces could provide the CP community a boost in the future.Hopefully our “Aging with Cerebral Palsy” focus chat recap will give you a boost in dealing with CP in your future. Remember you may keep the conversation going by answering the week’s extend-the-conversation question.

Answer in the "Comments" section- What changes to cerebral palsy with regards to aging should we expect and how do you deal with them? “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?”

Respond by commenting below. Expect Devin in the next few days with the recap for our June 7th Twitter chat. Until next time!

-Zachary

#CPChatNow Recap- 05-17-2017

Many interesting topics emerged Wednesday, May 17th, 2017 during the weekly cerebral palsy Twitter chat #CPChatNow. Or at least I, co-host Zachary Fenell, found the subjects intriguing. Go ahead and use this recap to draw your own conclusions.

Early on I asked about others’ sleeping habits. Specifically I sought information regarding the positions people sleep in and how many pillows they sleep with.

Co-host Zachary Fenell and participant Blemi discuss the positions they sleep in.Blemi tweets a photo of a Contour pillow that she recommends using between your knees.As I revealed in my back and forth with Blemi, curiosity motivated my question. I wondered if CP played a role in the positions we find comfortable. The various responses helped to provide the data needed to make such an evaluation.

#CPChatNow participants discuss the positions they sleep in at night.Overall laying on your side with legs bent seemed the most popular sleeping position. Around 8:30pm ET our May focus chat announcement transitioned the conversation to a different matter.

Zachary announces on May 31st #CPChatNow will hold a group-led focus chat about aging with cerebral palsy. The announcement sparked early dialogue on the subject.Aging with cerebral palsy proves an in-demand issue. Like the above screenshot shows, participants couldn’t wait until May 31st to start addressing multiple points! We hope you will mark the “Aging with Cerebral Palsy” focus chat in your calendar and join us Wednesday, May 31st.

Concentrating back on our May 17th chat, friendly chatter kept the night progressing. This entailed individuals’ to-read lists. Mentioning a cerebral palsy memoir on my own to-read list caused the dialogue to evolve.

Interim #CPChatNow co-host Devin Axtman explains why he would not write a cerebral palsy memoir.Interim co-host Devin Axtman noted he considers his life “pretty typical” and not really memoir worthy. Other participants expressed similar sentiments. Going a step further, Devin critiqued the disability stories currently out there.

Devin critiques disability stories, referring to a lot of them as repetitive. Devin’s thought that disability stories can get repetitive spurred disagreement with #CPChatNow regular Rachel Folly. She supported her opinion with cerebral palsy’s individualistic nature. Devin further explained his critique, detailing what he deems the same story arch. What do you think? Let us know by answering for the week’s extend-the-conversation question, “Do you find disability stories repetitive? Why or why not?”

Leave your reply via a comment in the “Comments” section. Perhaps we will even revisit the question during our May Google Hangout. As Devin reminded us, the video chat takes place on Thursday, May 25th, 2017.

Co-host Devin Axtman reminds #CPChatNow that our May Google Hangout will be Thursday, May 25th.Towards the chat’s end a younger participant Kate initiated discussion asking others about how participants’ parents handled the cerebral palsy diagnosis. Replies demonstrated varying approaches taken.

#CPChatNow participants share how their parents handled the cerebral palsy diagnosis.This week's extend-the-conversation question asks "Do you find disability stories repetitive? Why or why not?"Thank you all for reading and your interest in #CPChatNow. Hopefully you can make tonight’s chat, beginning as usual at 8pm ET. If you cannot participate this week though, please try participating next week on Wednesday, May 31st for our “Aging with Cerebral Palsy” focus chat. Until later remember to answer the week’s extend-the-conversation question.

“Do you find disability stories repetitive? Why or why not?”

Comment below to respond!

Tweet you soon,

-Zachary

#CPChatNow Recap- 05-03-2017

Various topics emerged Wednesday, May 3rd, 2017 amidst the two-hour live cerebral palsy Twitter chat we call #CPChatNow. I am co-host Zachary Fenell and I am here to do but what else?! Recap the previous week’s chat. So get ready to chug along.

For another week ABC’s sitcom Speechless proved a hot topic! That included discussion about the previous week’s episode, “R-U– RUNAWAY.”

#CPChatNow participants discuss Speechless episode 20 (season 1) "R-U-- RUNAWAY."Like I mentioned, the episode inspired my at the time in-progress blog post. Anyone interested can read, “Needing Role Models with Cerebral Palsy.” Warning to anyone yet to watch the episode “R-U– RUNAWAY,” my post contains minimal spoilers.

Regarding spoilers, we at #CPChatNow possess an informal anti-spoiling policy. We welcome participants to multi-task, watch Speechless and live tweet us. However we insist on leaving any detailed Speechless conversation outside the chat.

Zachary puts on his co-host hat and reminds participants to not discuss Speechless in detail.Like I explained on May 3rd, this policy intends to protect participants who live in areas where the show still hasn’t aired. After all, people in different time zones and different countries make up our community! Avoiding spoilers demonstrates thoughtfulness. I personally like to think about #CPChatNow as a thoughtful community.

Regular Rachel Folly showed mindfulness, bringing up an annoyance she recently came across.

Rachel raises a complaint about a video title.Admittedly Rachel’s tweet confused me. Something you can tell by my replies in the above screen shot. Turns out Rachel and I watched different adaptions to the same video. Versions uploaded by separate users. Youtube user bagar5 uploaded the version Rachel linked to.

Meanwhile I previously viewed the video uploaded by the official Underarmour channel.

Confusion aside, Rachel raised a valuable point with the version she linked to. The term “boy” appears questionable given Johnny Agar’s age. What do you think? Answer for the week’s extend-the-conversation question, “Does the ‘Boy’ reference in the user uploaded Underarmour commercial video bother you? Why or why not?” Respond in the “Comments” section.

While questions surfaced about the video’s title, reaction to the actual content seemed overwhelmingly positive.

Devin and Rachel both say flattering things about the Underarmour ad.Interim co-host Devin Axtman displayed great enthusiasm for the ad. Rachel echoed the positivity, saying she found truth in the video’s message. Long-time regular Jen continued the topic merry-go-round, with some assistance from Guardians of the Galaxy‘s Rocket.

#CPChatNow participants bond over common interests, not just cerebral palsy!As you see from the preceding screenshot, the Guardians of the Galaxy talk soon led to Jen and relatively new regular Dave Smith to bond over collecting POPs. Common interests outside cerebral palsy albeit collecting POPs or baseball, hockey, wrestling, music, etcetera helps us form deeper relationships within our community.

Answer this week's extend-the-conversation question- Does the "Boy" reference in the title of the user uploaded Unerarmour commercial video bother you? Why or why not?Perhaps you will contemplate joining us! Our Twitter chat happens every Wednesday at 8pm ET. Perchance you do not use Twitter, you can always contribute by answering the recap’s extend-the-conversation question. Remember this week’s question asks the following.

“Does the ‘Boy’ reference in the user uploaded Underarmour commercial video bother you? Why or why not?”

Answer by commenting below! Until next time.

-Zachary

 

#CPChatNow Recap- 04-19-2017

Every week the Twitter chat #CPChatNow thrives thanks to our great community. A fact our April 19th, 2017 Twitter chat exemplified! I am proud co-founder and co-host Zachary Fenell here to recap our latest chat.

Interim co-host Devin Axtman suggested we start the night by sharing peaks and pits from the last seven days. An idea in past weeks offered up by participant Amanda. Hamda’s peak raised the night’s first communal mention.

Many CPChatNow participants keep in touch with each other throughout the week.Participants keeping in touch throughout the week demonstrates the strength in connections made within our community. Something I wish to emphasize by creating new #CPChatNow promotional graphics. In past months I asked participants to submit photos with them in their #CPChatNow shirts for such graphics. I asked again April 19th, this time also sharing a taste to what said images might look like.

Zachary Fenell shares a prototype for a new website banner while requesting photos to include in said banner. One signature trait to a true community involves seeing an idea shared grow and evolve. Long-time participant Hannah Pike set said evolution in motion with her photo submission.

Hannah submits a photo with fellow #CPChatNow participant Alena Brand for inclusion in CPChatNow's new promotional graphics.Hannah thinks her photo with Alena would be a good fit for the promotional images because the picture shows community.Additionally opening up submissions beyond pictures featuring CPChatNow shirts seems only fair to those without CPChatNow shirts. If you want your face incorporated into CPChatNow promotional material, submit a photograph! You can send our way via a direct message through our Facebook fan page.

Another aspect to community emerged while a couple participants made small talk. Shira discussed a school project which peaked Blemi’s interest. Soon their dialogue blossomed in more meaningful ways.

Knowing Blemi has made a career with numbers despite struggling at math brought Shira some hope.Hope, enhanced ideas, and friendship all represent community characteristics. What characteristics do you value in a community? Tell us! Answer the aforementioned for the week’s extend-the-conversation question.

This week the CPChatNow extend-the-conversation question asks "What characteristics do you value in a community?"

In the “Comments” section share what characteristics you value in a community.

Leave your reply in the “Comments” section. Then join us tonight on Twitter at 8pm ET. Susanne Kate Jones returns to our community to lead us in a focus chat titled “A Serious Chat About Comedy.” You can expect an insightful discussion sprinkled with laughs throughout. Talk and laugh with you later.

Sincerely,

-Zachary

#CPChatNow Recap- 04-05-2017

Hit sitcom Speechless and aging with cerebral palsy proved popular topics during the April 5th, 2017 #CPChatNow. I am co-host Zachary Fenell here with the better late than never Twitter chat recap. Conversation turned to Speechless shortly after our usual Wednesday evening salutations.

Zachary asks about topics people want to see addressed on the show Speechless.Discussion initiated when I asked about subjects people want to see Speechless address in future episodes. Blemi spoke up, saying she wants to see an episode addressing fake friends. Another participant went further, expressing a desire to guest star on the sitcom. Not as farfetched a possibility as you might think!

Comedian and actress Maysoon Zayid wants to guest star on Speechless as Maya's disabled friend.Yes, actress and comedian Maysoon Zayid popped in to join our Wednesday evening chat. She wishes to guest star on Speechless, playing Maya’s disabled friend and hang/fight with the other moms. Does that sound intriguing to you? Tweet Speechless on Twitter and tell them you want to see Maysoon guest star!

Maysoon’s presence also brought a newcomer to #CPChatNow. He shared what he hopes to see in a future Speechless episode.

Newcomer to #CPChatNow Dave Smith wants to see a variety of CP cases on a Speechless episode.Personally, I like Dave’s idea to showcase the wide spectrum cerebral palsy offers. Your turn, though. Answer for the week’s extend-the-conversation question, “Is there a topic you would like to see Speechless address in its show that they have yet to address?” Respond in the “Comments” section.

Eventually the night’s dialogue moved beyond Speechless. Although the first new topic remained Speechless inspired. The night’s episode delved into the ways teachers interact with their disabled students. #CPChatNow regular Hannah reacted to this.

#CPChatNow participants discuss their teachers and the levels of expectation they possess for disabled students. While Hannah couldn’t relate directly to what happens in the episode, she shared a similar experience and the emotional impact said situation created. Emotions discussed soon transitioned from hurt to fear thanks to chat regular Jen.

Jen wants to discuss fears, a notion seconded by Blemi.Here the previously mentioned aging with cerebral palsy subject arose.

#CPChatNow participants discuss the possibility of losing mobility as they age. Amidst the sharing and peer learning Maysoon offered some well needed positivity.

Maysoon recommends yoga to help combat aging with cerebral palsy. Hamda seconds the suggestion sharing a list of yoga resources. Hamda supported Maysoon’s yoga suggestion, linking to a resource list for adaptive yoga. Checkout the list, courtesy American Academy for Cerebral Palsy and Developmental Medicine. Maybe you will discover something worthwhile to you.

Answer for this week's extend-the-conversation question "Is there a topic you would like to see Speechless address in the show that they have yet to address?"However before viewing the list, remember to answer the extend-the-conversation question. “Is there a topic you would like to see Speechless address in its show that they have yet to address?” Reply below in the “Comments” section.

Thank you for your interest in #CPChatNow. I look forward to tweeting you tonight.

Sincerely,

-Zachary

#CPChatNow Recap- 03-29-2017

Some cheers likely rang out in the #CPChatNow community when flipping the calendar from March to April. Just my speculation as #CPChatNow co-host Zachary Fenell. Pretty ironic though, given March’s designation as Cerebral Palsy Awareness Month. Still I possess reason behind my postulation.

Seemingly every week in March participants joined in seeking to escape from rough and tiring seven days. Same held true for our final March 2017 Twitter chat.

Zachary Fenell tries to reroute #CPChatNow from going down the rough, tired road another week.

As the above shows, Jen possessed good cause to feel tired. A tornado touched down in her town! Thankfully everyone she knew remained safe. Finding comfort in that fact, the Twitter chat progressed forward.

Both interim co-host Devin Axtman and myself spurred dialogue mentioning posts we found on The Mighty website. Actually his share “Why I Am Studying to Be a Physical Therapist with Cerebral Palsy” inspired my share.

Zachary Fenell shares an article questioning the narrative often seen with disability related prom stories.You can read the piece yourself, “The Problem with Those Prom Stories About People with Disabilities.” The idea to change narratives requires addressing how the mainstream media portrays life with a disability. Those in our community pointed out multiple problems with the current status quo portrayal.

#CPChatNow participants share their mainstream media pet peeves with regards to how the media portrays life with a disability.Habit to pity, inspirational undertones, and fitting us into a cookie cutter news template only marked a few pet peeves highlighted. Regular Hannah Pike spoke up, hitting upon a quite frustrating topic.

Hannah gets frustrated with how the media makes disability seem like an issue exclusively impacting kids.Maybe you agree with Hannah. You too growing irritated watching the media make disability appear a stand alone issue impacting children. Or, perhaps something different peeves you. Let us know! Answer for the week’s extend-the-conversation question, “What is your biggest pet peeve of how the mainstream media portrays disability?” Leave your response in the “Comments” section.

Going back to the 29th, Hannah’s response segued to a conversation discussing aging. Regular Jocelyn playing a pivotal role in transitioning subjects, noting CP’s long-term effects on the body. A real concern despite cerebral palsy’s technical non-progressive status.

#CPChatNow discuss aging with cerebral palsy.Like the above screenshot reveals, I am hoping to organize an aging with cerebral palsy focus chat for May. Make sure you stay tuned for such an announcement, along with our April focus chat announcement. The latter should arrive imminently. Not this week, but probably next week.

This week's extend-the-conversation question asks "What is your biggest pet peeve of how the mainstream media portrays disability?" Answer in the "Comments" section.Distract from the building anticipation regarding our upcoming focus chats. Remember to answer the extend-the-conversation question.

“What is your biggest pet peeve of how the mainstream media portrays disability?”

Reply in the “Comments” section. Tweet you soon.

Sincerely,

Zachary