Tag Archives: cerebral palsy community

#CPChatNow Recap- 09-04-2019

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Alongside each Wednesday comes community, at least for participants in the weekly cerebral palsy Twitter chat #CPChatNow. I am chat co-host Zachary Fenell. Welcome to the September 4th, 2019 #CPChatNow recap. The night began on a celebratory note.

Devin and Zachary wish Jen a happy birthday.

My co-host Devin Axtman started the night by wishing long-time chat regular Jen a happy birthday. Jen would respond, letting us know she indeed enjoyed a happy day.

Jen celebrated her birthday by going to the zoo!

Jen celebrated her birthday by going to the zoo! She even captured a cool video featuring a penguin. Unfortunately, another long-time chat regular experienced a much less fun day.

Health woes continue plaguing beloved #CPChatNow member Hannah. She described her last two years as “constantly fighting.” No matter how long the fight lasts, our community will remain in her corner.

Elsewhere in the chat I asked participants to give me feedback on potential shirt designs.

Zachary asks #CPChatNow for input on potential shirt designs.

Personally, I am looking to release a shirt promoting a message I find especially meaningful. If you read my recaps before, you heard the message because I end my recaps with these words. “Don’t blend in. Blend out!”

Responding, participant Jeni said she liked the second option. Beyond the message, Jeni liked that the design contains Seahawks colors. She reasoned those colors would draw a lot of attention. Plus irritate her sister, a 49ers fan!

Sports and team rivalries provide a great way to develop connections and friendships. Although, any common interest would do the same. For example, most in the chat know Devin, myself, and a few others share an interest in wrestling.

Devin and Zachary talk professional wrestling.

What about you? Answer as the week’s extend-the-conversation question, “What is an interest that has helped you develop friendships?” Respond below in the “Comments.”

Then add our Twitter chat to your weekly schedule. The chat happens every Wednesday, starting at 8pm ET. I hope to tweet you soon.

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

-Zachary

This week's extend-the-conversation question asks, "What is an interest that has helped you develop friendships?"
Answer in the comments below!
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#CPChatNow Recap- 8-14-2019

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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

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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

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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

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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

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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

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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