#CPChatNow Recap- 8-14-2019

This past week in #CPChatNow was buzzing as always! Members talked about various things such as therapy they enjoyed over the years, learning to fall, and disaster preparedness with a disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we start with a dreaded subject when you have CP, falls. This was sparked by a post in The Mighty about falling. Members discussed things such as learning to fall and their fear of falling. Hannah learned to fall so well she taught others!

Zach asks if members have been afraid to fall. Hannah tweeted she never feared it and she taught a teacher's daughter how to fall

Zach shared his fears about falling were largely about messing up large events. I shared I had to wear wrist guards due to fear of hurting myself. Heather did not have to worry about this since her mom is a nurse:

Devin tweets he's not afraid, but mindful, zach tweets his fears are screwing up big events, I tweet that I wore wrist guards on the playground. Heather tweeted she did not, but her mom is a nurse.

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes:

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation.  Chris tweets about experiencing similar things and disaster planning for earthquakes

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair:

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users.  Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair
Zach tweets about getting nervous under pressure and then states he might surprise himself, but both agree they hope they never have to find out

We have talked about some heavy things in this recap, so I would like to end by focusing on a lighter topic. Therapy is a constant in many people’s lives with CP. Zach focused on therapy that was effective for us. Grace and I discussed horse therapy:

Zach tweets and asks about a therapy that helped you. I tweeted I loved horse therapy and Grace tweeted she had it from 6-18. Zach tweets he had PT on a weekly basis from 3 until starting college.

This brings us to our Extend-The-Conversation Question: What was your favorite moment in therapy? Please share your answer in the comments and join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

A picture of a woman jumping and smiling before a purple sky. What was your favorite moment in therapy? is above her head in white and Extend-The-Conversation-Question is below her in white with a white #CPChatNow in the lower left hand corner.

#CPChatNow Recap- 7/3/2019

It was the day before the 4th of July and #CPChatNow brought the fireworks as usual. Members talked about fireworks, disability podcasts, wheelchair seats at sporting events, and just how far you mind can help overcome your disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride of this week’s recap.

First, members talked about fireworks themselves. Fireworks are also known as the bane of existence when you have the Cerebral Palsy startle reflex.

Zach asked if fireworks startled members. Jen stated they do and Daryl Perry agreed

Next, Zach brought up the cool story of Peter Kline. He has completed 45 marathons with disabled rider athletes. Well done Mr. Kline!

Zach posts about Peter Kline completing 45 marathons with different rider athletes
Paul Miller and Addiengeorge tweeted their appreciation towards Peter Kline

I would like to highlight one of my favorite podcasts (disability or otherwise), the Disability Visibility podcast. The podcast is hosted by Alice Wong and looks at different issues surrounding disability:

I recommend the Disability Visibility podcast. Zach recognized the host, Alice Wong, from the #CripTheVote chats.

Next, members talked about wheelchair seats at sporting events. Chris is going to an Indy Car race in Portland in September. She talked about an organization, @halfaccess, where people can post about the accessibility of a venue.

Zach tweeted about going to Bowling for Soup but being concerned about standing room only conditions. I reported it sucked when other people stood up when I had wheelchair seats and newer stadiums with elevated seats tended to be better. Chris tweeted about an organization called halfaccess that catalogue accessibility

Finally, #CPChatNow was tagged in an intriguing question by @cpandm. They asked if it was OK to be frustrated by others saying, “The body will do what you decide to make it do.” In other words, whether it is OK to be frustrated by your mind not being able to will your body to do things.

I responded to @cpandm's question. They felt frustrated since they can't will themselves to walk. I posted that the body doing what the mind wants it to do is unrealistic and that the will can't overcome things.
Zach's answer was that every case is different and the realm of possibility is different and that we need to listen to our bodies.

This brings us to our Extend-The-Conversation Question: How do you know when your body is telling you you’re at your limit? Share your answer in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

Thanks for reading!

-Devin

#CPChatNow Recap- 4/24/2019

Hello Internet! #CPChatNow was buzzing last week. Members talked about walking in the rain, their favorite photo of themselves, and the need for rails while using stairs.

Zach and I lamented about recent experiences while walking and rolling in the rain.

i tweeted about needing a wheelchair umbrella and my poncho died on the way home, zach tweeted he needed a hat umbrella and that kind people recently gave him a ride home

Next, Zach shared one of his favorite photos of himself being near his goal of completing a marathon:

zach sharing his favorite photo of him passing mile marker 25 during his marathon

Zach asked about what side of the street members with Hemiplegic Cerebral Palsy prefer to face. This then morphed into a conversation about stairs and handrails:

zach asked about which side of the street members with hemiplegic cp prefer to face. jeni tweeted no preference, but she prefers to walk on the inside of the sidewalk if possible
ciaran tweeted he likes to have a railing on his unaffected side, zach tweeted he likes his good leg facing the street, zach goes without railings to build his balance, i tweeted lack of railings was an issue at wrigley field
zach tweeted he has been to wrigley and saw the cubs and brewers play in 2013 when he only went up one steps. zach also lamented the gap between gymnasium rails and the strategy he uses to move to the next rail

This brings us to our Extend-The-Conversation Questions (for the hemis): Are there particular things you like to do with you non-affected side?

Thanks for reading! Join us each Wednesday at 8pm Eastern on Twitter. Use the hashtag #CPChatNow!

#CPChatNow Recap: 1-30-2019

Wednesday, January 30th, 2019 the cerebral palsy Twitter chat #CPChatNow put on full display arguably their greatest virtue, community. At least I would make said argument and I am #CPChatNow co-founder and co-host Zachary Fenell. Seemingly I am not alone in this opinion either. After a rough week, long-time #CPChatNow regular Hannah Pike turned to the chat seeking a little normalcy.

Seeking a sense of normalcy, long-time participant Hannah turns to #CPChatNow.

Participants responded giving Hannah a welcoming reception. In-particular my co-host Devin Axtman asked Hannah if she received the penthouse suite treatment, a reference to last year’s Speechless Thanksgiving episode “C-E– CELEBRITY S-U– SUITE.”

Beyond the usual names, our community also welcomed a new member January 30th.

#CPChatNow participants welcome a newcomer, Sean.

Newcomer Sean decided to accept an invitation from #CPChatNow regular Shira to join the chat’s fun. Immediately Sean engrossed himself into the dialogue, asking participants to share their favorite portrayal of a person with CP in movies or TV. An effective conversation starter!

Besides opening our metaphorical arms to Sean, our community also warmly greeted a returning familiar face.

Familiar face Jorge Oteiza returns to #CPChatNow!

Jorge Oteiza managed to find the time within his busy schedule to drop by and say hi. A schedule that includes job hunting, finishing his last semester at college, and handling graduation thoughts.

New and familiar faces alike enjoyed each other’s company. We celebrated accomplishments.

Ciarán's handwriting skills continue to improve.

Ciarán shared his continual handwriting improvement. Progress Sean called “proof that persistence is key.” Persisting forward in our recap, additionally to toasting each other’s accomplishments, members in #CPChatNow supplied one another encouragement.

Recalling almost falling earlier in the day Shira commented about avoiding falling on her face, saying “Yay, me?” Both Sean and I reassured, yes indeed. Yay you! Sean reasoned getting away without a broken bone or chipped tooth equals a win over gravity.

Similarly I noted these small saves prevent serious harm. Therefore Shira deserves to feel proud. Surely we all experience such moments anyways. As the week’s extend-the-conversation question, share yours! Respond in the comments.

“Share your own ‘yay me’ moment.”

This week's extend-the-conversation question asks "Share your own 'Yay me' moment.

Let us celebrate our small victories together. Join our community live on Twitter every Wednesday starting at 8pm ET.

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

-Zachary

#CPChatNow Recap- 12-26-2018

One night removed from Christmas, individuals in the cerebral palsy community gathered for the last 2018 #CPChatNow live Twitter chat. Holidays remained a forefront concentration too, as you will see reading this recap. A recap gifted to you by yours truly, co-host Zachary Fenell.

Initial conversation revolved around Christmas gifts participants received the previous day.

Jen received too many great Christmas gifts to name just one favorite.When asked about naming favorite gifts received, long-time chat regular Jen could not name just one. Between Stranger Things seasons one and two, her Doug the pugs, and new iPad Jen encountered a tough call. Meanwhile chat regular Seth and my co-host Devin Axtman expressed clear favorites.

Seth's favorite gift came from one of his aides.Devin's favorite gift received was an ugly Christmas sweater.Seth’s aide gave him $100 on betonline, an online poker/sports betting site. Fun! Devin also received a fun gift, an ugly North Dakota State Christmas sweater. Eventually the dialogue transitioned past Christmas to New Year’s.

#CPChatNow participants reflect back on their 2018s.

Personally, New Year’s always puts me in the mood to reflect. Therefore I asked participants to share some positives from their last 12 months. Another long-time regular Hannah recalled making the most of the good moments. Hannah experienced relentless health concerns throughout 2018, so enjoying the good occasions became extra important.

Additionally, Devin responded saying 2018 brought him growth both personally and professionally. What about you? Answer for the week’s extend-the-conversation question, “What were positives for you in 2018?” Leave your reply in the “Comments” section.

Expanding beyond our personal 2018s, we furthermore explored 2018 relating to the overall cerebral palsy community.

Devin and Zachary discuss the positives 2018 brought the general cerebral palsy community.Answering the question “What were positives for the CP community in 2018?” Devin named the continued media presence with Speechless and Maysoon’s project. That latter project refers to Can-Can, a sitcom starring actor, comedian, and past #CPChatNow participant Maysoon Zayid. In late 2018 ABC ordered a Can-Can pilot.

Can-Can possesses exciting possibilities. Same applies to Speechless perchance the show gets picked up again in 2019.

Zachary hopes Speechless will get a fourth season.Speechless getting renewed for season three stood out to me as a 2018 positive for the CP community. Now I am hoping a fourth season will get the green light in 2019. Much potential exists story wise regarding JJ heading off to college. Devin noted he could even consult on JJ’s accommodations scenes! My co-host’s work history gives him the credentials. You never know, right?

This week's extend-the-conversation question asks "What were positives for you in 2018?"Depending upon what happens with Speechless and Can-Can, 2019 could get incredibly exciting for the CP community. Yet before we commit ourselves to the year ahead, let us take a final moment to remember 2018. Answer the week’s extend-the-conversation question, “What were positives for you in 2018?” 

Respond below! Then make a New Year resolution to join us on Twitter every Wednesday at 8pm ET.

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

-Zachary

#CPChatNow Recap- 11-07-2018

Names such as Ross, Monica, and Joey remained missing but nonetheless the live cerebral palsy Twitter chat #CPChatNow contained a Friends-like vibe Wednesday, November 7th, 2018. I am co-host Zachary Fenell, here to explain what that means. Do you want to guess the best way to achieve this objective? If you said a weekly recap, then give yourself a congratulatory pat on the back!

Friends offered a memorable opening with the cast dancing while The Rembrandts’ song “I’ll Be There For You” plays. Lyrics in-part include “It’s like you are always stuck in second gear when it hasn’t been your day, week, or even year. But, I’ll be there for you.” For multiple #CPChatNow community members, 2018 has been tough. The unfortunate trend continued into the November 7th, 2018 chat.

#CPChatNow participants join the chat after a long, tiring day.Early in the chat my co-host Devin Axtman admitted to feeling very tired. Long-time regular Hannah Pike seconded the exhaustion. Although not her day, month, or even year Hannah stood there alongside everyone, tweeting out a pick me up.

Hannah tweets everyone encouragement with the message "So far you've survived 100% of your worst days. You're doing great."The knowledge “So far you’ve survived 100% of your worst days. You’re doing great” helped Hannah get through the day. So she tweeted the quote to help lift spirits. Do you repeat a certain phrase or mantra to empower you past the tough days? Answer for the week’s extend-the-conversation question, “What phrase or mantra helps get you through your bad days?” 

Leave your phrase or mantra in the “Comments” section. Another way to get through challenging times involves laughter. During the chat November 7th we shared a few laughs together.

#CPChatNow participants joke about feeling old.The laughter arose when new lingo emerged as a topic. Long-time #CPChatNow participant Jen mentioned the new lingo, for example “woke” and “what’s the tea.” Responding I credited #CPChatNow for single-handedly keeping me in the know. Simultaneously I tweeted a GIF featuring an old man shaking his finger accompanied by the caption “When I was your age, television was called books.”

Replying Jen recalled the lingo from her days, technically our days since only a few years separate us. One in-particular caught youngling Shira’s attention. She said others still use “Talk to the hand” around her. I quipped talk to the hand is a classic because the face don’t want to listen!

Elsewhere in the chat the looming winter surfaced as a common subject.

#CPChatNow participants discuss the best and worst parts of winter.I posed the question, “What do you find the best and worst part of winter?” Devin called the cold the worst part and Christmas the best part. I agreed about the holidays, saying people slow down and spend time with loved ones. A bit pessimistic though, I wondered how long that would last commenting “Just look at what Thanksgiving has become!”

Offering some hope Shira shared an optimistic outlook. She believes the holidays will naturally cycle back around to a familial focus. Her optimism lessened my pessimism. Once again an instance where #CPChatNow participants remain there for each other!

This week's extend-the-conversation question asks, "What phrase or mantra helps you get through your bad days?"Keep the positivity going. Remember to answer the week’s extend-the-conversation question, “What phrase or mantra helps to get you through your bad days?” Reply below in the “Comments.”

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

-Zachary

#CPChatNow Recap- 1-24-2018

This past week in #CPChatNow members took a page from the Baseball Hall of Fame and inducted members into a mythical Cerebral Palsy Hall of Fame.  Members also talked about parenting strategies for kids with CP and positive things that have happened this week. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.  All aboard!

First, we’ll start the recap on a positive note. Hannah asked about a positive thing that has happened this week. Zach talked about a speaking engagement and Blemi talked about trying to find something positive everyday:

Hannah asked about positive this week.

Next, talk turned to a video with Zach Anner, a comedian with CP, where Zach offers his parenting advice for parents of children with CP.

Devin talked about the necessity of parents watching their kids struggle. Zach mentioned that it is probably hard for parents to see kids struggle and a balance required after Jen brought up struggles putting on her socks

Seth, Rachel, and Zach all agreed with the video’s message that it is important to treat children with CP like kids without CP:

Seth, Rachel, and Hannah agree with the video's assertion that kids with CP should be treated like other kids

Zach then took inspiration from the Baseball Hall of Fame’s announcement and asked members who they would like to see in a CP Hall of Fame. Members mentioned various people including Geri Jewell, Christopher Nolan, and Maysoon Zayid as well as things like #CPChatNow.

Hannah and Zach talking about #CPChatNow going in the CP Hall of Fame

Zach and Devin talking about their choices for the CP Hall of Fame

Members continue to discuss who they would like to see in the CP Hall of Fame

This brings us to our Extend-The-Conversation question: What tips do you have for parents of children with CP?

Extend-The-Conversation is at top in black text. The word tip is in black in the middle with a lightbulb over the letter I. What tips do you have for parents of children with disabilities? is below the word and tip with the multi-color #CPChatNow logo in the bottom left hand corner

Please answer in the comments and join us on Twitter at #CPChatNow every Wednesday at 8pm ET.

#CPChatNow Recap- 5-10-2017

This week’s #CPChatNow Twitter chat was a ride ranging conversation on current events in community member’s lives and topics unique to the disability community.  This is your Interim Co-Host, Devin Axtman, and I will be taking you on this week’s recap journey.

#CPChatNow regular, Dave Smith, started the conversation by posting a video about the Alinker, a walk-assisted device.  Members unanimously agreed it would be beneficial and preferable to using a walker:

#CPChatNow members Kate and Jocelyn returned and debated the proper pronunciation of Cerebral Palsy along with Rachel:

Kate also sparked much engaging conversation about having mild CP and not feeling like she fits in within the disability community:

Members also spoke of their fondness and desire to learn American Sign Language (ASL):

Finally, #CPChatNow Co-Host, Zachary Fenell, ended the chat on a happy note by announcing that he had recently taken a part time job at the local library:

Also, please join us on MAY 25th for our monthly Google Hangout (tip of the cap to Zach for backing up my errant throw):

Finally, this brings us to our Extend-The-Conversation question: Where are some areas the disability community can improve its inclusion of others?  Please share your answer in the comments and be sure to join us on Twitter every Wednesday at 8 Eastern Time. 

 

#CPChatNow Recap- 07-06-2016

To kick off July the #CPChatNow community reflected. Co-host Zachary Fenell here, guilty causing said reflections. Everything started with one question.

Co-host Zachary Fenell asks how has #CPChatNow impacted your life. #CPChatNow builds community and lessens feeling isolated.Besides building community to reduce isolation, another common theme emerged from the answers.

Co-host Zachary Fenell talks about how #CPChatNow has made him a better cerebral palsy advocate.

#CPChatNow has helped keep Devin informed about current events in the disability community.Current events actually wound up finding a way into the night’s dialogue as well.

Speechless will focus around a nonverbal young man with cerebral palsy and his family.Speechless revolves around JJ, a nonverbal young man with cerebral palsy, and his family. This three-minute trailer gives a good idea what issues you can expect Speechless to tackle.

While my response to live tweeting Speechless remained partly humorous, doing so could lead to amazing dialogue. Obviously people will need to watch to make live tweeting work. Therefore let me ask as the week’s extend-the-conversation question, “In the fall do you plan to watch Speechless?”  As always respond in the “Comments” section.

Though an exciting buzz surrounds Speechless, let us not overlook the summer. Much summer fun still awaits ahead. Maybe you plan on seeing a couple concerts. If so, you will want to stop by tonight on Twitter for our “Concert Going with Cerebral Palsy” focus chat. Tonight’s focus chat leader Jocelyn dropped in last week to share her excitement for tonight.

Tonight #CPChatNow's own Jocelyn leads a focus chat on concert going with cerebral palsy.My co-host Blake Henry reminded us a second reason to feel excited about the week.

#CPChatNow participants will video chat via Google Hangouts Thursday, July 14th. The chat begins at 8pm ET!Once a month we use Google Hangouts to enjoy a video chat. The invitation goes out around 8pm ET. Do you want to join the Hangouts fun? Please direct message Blake or myself to request an invitation. To maintain a private setting we do not post the link publicly.

Your answer will help determine if we live tweet Speechless in the fall.Meanwhile as you stir in excitement for tomorrow’s Google Hangout and tonight’s focus chat, remember to answer the week’s extend-the-conversation question.

“In the fall do you plan to watch Speechless?” 

Your answer will help determine if we should live tweet the show come September. Answer below by commenting.

Tweet you soon!

-Zachary

 

 

 

 

#CPChatNow Recap- 05-04-2016

Week after week #CPChatNow offers the cerebral palsy community a place for support, advice, and understanding. Proud chat co-founder and co-host Zachary Fenell here to catch you up on the latest. Now before I continue with the May 4th recap, let me share a disclaimer. Life gets in the way sometimes. Busy schedules causes the occasional Twitter chat to end up uneventful. That proved the case with the April 27th #CPChatNow. Hence no April 27th recap.

Yet do not mistaken a down week for lacking interest in the Twitter chat. May 4th demonstrated our value to the cerebral palsy community. A newcomer joined in, seeking advice.

A newcomer to #CPChatNow seeks tips to deal with a "so called friend."Additional advice discussed during #CPChatNow about how to deal with people who make life with cerebral palsy more frustrating.An interesting aspect to #CPChatNow forms with the twists the dialogue takes. For instance, the showering issue cited above led to a full fledged conversation on said subject.

Cerebral palsy can make showering troublesome. Therefore baths serve as an appealing alternative.Would you like to contribute to the discussion? The extend-the-conversation question enables you too! Answer “Do you take showers or baths?” Leave your answer in the “Comments” section.

Moving on, our community includes various age groups. Therefore understanding can lead to another feeling. I am talking about hope!

The various ages of #CPChatNow participants lets the younger participants know life with cerebral palsy gets better.Between the shared advice and understanding, participating in #CPChatNow stands a joyful experience. A claim backed up by participant feedback!

Participant feedback backs up the claim that CPChatNow is an enjoyable experience.Speaking about advice, another useful tidbit emerged from the May 4th chat.

Next time you are out for drinks, try this cerebral palsy life hack.Also on May 4th my co-host Blake Henry and I surprised our community with a couple announcements. The first announced the next focus chat, which we actually held Wednesday, May 11th. Blake led us in a chat on the benefits of community service. Stay tuned for that recap!

Secondly, Blake announced the date for our May Google Hangout.

CPChatNow's next video chat will be held Thursday, May 19th via Google Hangouts. Google Hangouts allow us to talk face-to-face via video chat. Please send me a direct message on Twitter if you want to receive the Google Hangout invite. For privacy reasons we do not publicly share the Hangout’s link.

Do you take showers or baths? While you count down the days to this month’s Google Hangout and await the “Benefits of Community Service” focus chat recap, answer the extend-the-conversation question currently at hand. “Do you take showers or baths?” 

Respond via a comment below.

Thanks for reading. Talk again soon!

-Zachary