#CPChatNow Recap- 07-10-2019

Posted on July 16, 2019 by zacharyfenell

To those who participate in the live cerebral palsy Twitter chat #CPChatNow, each week Wednesday provides a hub for community. A place to find emotional support, plus share similar interests, common experiences, and more! The July 10th, 2019 chat proved no different. Here with the details I am chat co-host Zachary Fenell. Enjoy your weekly recap.

Unfortunately for long-time chat regular Hannah, health woes prevented her from participating July 10th.

#CPChatNow community members provide emotional support to long-time chat regular Hannah.

Community members responded to Hannah’s news by sending her sympathy. Meanwhile a power outage caused another long-time chat regular Jen to join late. Ironically the power outage helped to power the night’s discussion.

Participants began chatting about what they like to do when without power. I mentioned reading, but you can only read if enough natural light remains available. On that note, chat regular Shira brought up lighting candles. Jen said she couldn’t light a candle to save her life, instead preferring flashlights. I seconded the notion, saying flames and CP equal a nerve-wrecking combination. My co-host Devin Axtman further supported Jen’s flashlight preference.

Devin also prefers flashlights over candles.

Whether reading by flashlight, natural light, or another source multiple members in our community expressed a liking towards If At Birth You Don’t Succeed by Zach Anner. Personally, Anner’s raw honesty within If At Birth You Don’t Succeed wowed me.

#CPChatNow participants discuss If At Birth You Don't Succeed by Zach Anner.

If At Birth You Don’t Succeed stayed on my mind’s forefront as earlier in the week I finished reviewing the book for my website. Getting back to the chat though, Heather additionally gave the book praise.

Heather shares why she likes If At Birth You Don't Succeed by Zach Anner.

Heather found Anner “quite relatable and funny!” Your turn now! Keep the conversation going. Answer for the week’s extend-the-conversation question, “What cerebral palsy related book do you recommend?”

Leave your recommendation in the comments below! Then join the fun LIVE! Mark your calendar for #CPChatNow, every Wednesday on Twitter starting at 8pm ET!

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

-Zachary

This week's extend-the-conversation question asks, "What cerebral palsy related book do you recommend?" — Answer by commenting below!

#CPChatNow Recap- 7/3/2019

Posted on July 9, 2019 by devinaxtman

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- 06-26-2019

Posted on July 3, 2019 by zacharyfenell

On Wednesday, June 26th, 2019 participants in the live cerebral palsy Twitter chat #CPChatNow discussed living with CP, emphasizing in-particular the LIVING part. Oppose to keeping the dialogue strictly CP related, members chatted about various subjects. Topics I, #CPChatNow co-host Zachary Fenell, will seek to summarize and deliver to you the best way I know how. Your weekly recap!

Recent college graduate and beloved #CPChatNow member Jorge Oteiza expressed wonderment over when he will get to put his newly obtained degree to use.

Jorge wonders when he will get to put his college degree to use.

Others expressed similar sentiments too.

#CPChatNow participants discuss the usefulness of their respective college degrees.

Personally, I mention career wise not really getting use from my degree. Nevertheless I still find the lessons I learned both inside and outside the classroom valuable. Similarly long-time chat regular Blemi said she does not particularly use her degree either, noting “Sociology and Polisci is a far cry from finance.”

Offering an insightful observation, #CPChatNow regular Shira commented “I guess it’s a reminder the path you take is rarely the one you’ll think you’ll take.” Shira herself ventures off to college for the first time this fall. She confided to #CPChatNow worries about maintaining current friendships once college begins. Qualms our community helped to ease.

Hannah reassures Shira that Shira will be able to maintain friendships.

Long-time community member Hannah reassured Shira. Hannah demonstrated her point by citing a friendship which dates back to preschool. All that leads to the week’s extend-the-conversation question, “How far back does your oldest friendship go?”

Answer below in the “Comments.” Then add to your calendar #CPChatNow. Our Twitter chat meets each Wednesday, starting at 8pm ET. I hope to tweet you soon.

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

-Zachary

This week's extend-the-conversation question asks, "How far back does your oldest friendship go?" — Reply in the comment section!

#CPChatNow Recap- 6/19/2019

Posted on June 25, 2019 by devinaxtman

This past week in #CPChatNow was hopping as always. Members talked about various topics like having multiple disabilities, horror movies and CP, and their personal analogy for the CP community. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, two long time members of the #CPChatNow community finally met each other in-person with Hannah Pike and my other co-host, Zachary Fenell, meeting:

Pictures of zach and hannah. zach and hannah are holding a homemade #cpchatnow poster, zach is sitting with hannah's dog levi, and there is a picture of Hannah's #cpchatnow sign

Shira asked if having CP made you more likely to have multiple disabilities:

Members chimed in that they had multiple diagnoses with CP and that other symptoms from CP might lead to a diagnosis:

Heather reports she has multiple diagnoses. I point out symptoms from CP can cause other issues

Next, members talked about the impacts from CP and their startle reflex on watching horror movies:

zach asked if startle reflex impacted horror movies. Hannah tweeted about liking Devil's knot and needing to watch a quiet place, grace lapointe said her startle reflex impacts her, but she loved get out. Blemi tweeted they are not her type of movie.

members continue to talk about issues with horror movies and startle reflex. members also talked cellphones

Finally, Zach asked if members had an analogy for the Cerebral Palsy community:

zach asks what analogy people would use for the cerebral palsy communtiy

zach says the CP community is like a music festival- there is a common bond in attendance (CP), but everyone has different experiences (seeing different bands)

Seth chimed in with his own analogy borrowing from a Lady Gaga song:

seth opines the cp community is closest to the LGBTQ community- born this way

This brings us to our Extend-The-Conversation Question: What analogy would you use for the CP community? Please share your answers in the comments!

Join us every Wednesday at 8 Eastern at #CPChatNow on Twitter.

Thanks for reading!

-Devin

#CPChatNow Recap- 06-05-2019

Posted on June 12, 2019 by zacharyfenell

Ladies and gentlemen, my name is Zachary Fenell and I am the co-host for the cerebral palsy Twitter chat #CPChatNow. Yet #CPChatNow remains much more than just a Twitter chat. Our participants make up a community. What exactly makes a community, a community though? That question I am able to answer by recapping the Wednesday, June 5th, 2019 chat.

A community disbands isolation, turning seemingly odd quirks into common bonds. Like sneezing and cerebral palsy!

#CPChatNow participants discuss the worst time to have to sneeze.

To an able-bodied person, a forthcoming sneeze probably raises one major thought “Better get a Kleenex.” Living with cerebral palsy adds another level to consider. Long-time regular Blemi described sneezing as “a whole body event for me.” I related, sharing I need to brace my lower half before sneezing. Otherwise I might blow myself off balance!

A second aspect to community involves supporting each other, providing concern and encouragement when life’s balance falters. Upon my co-host Devin Axtman literally experiencing this, #CPChatNow proved ready to rise to the occasion.

#CPChatNow participants give Devin emotional support after he fell.

Devin tweeted he just took a huge fall at a restaurant, but avoided harm. Community member Chris responded, sharing surprise she has not fallen at work yet. Continuing Chris said she began using a cane back in January. Based off her zero falls at work, the cane appears quite helpful.

Meanwhile I asked Devin about the after fall. In my experience people’s reactions can prove more flustering then the actual fall. Devin explained the floor’s weird texture caused his fall to sound extra loud. The loudness left others there to look prior to resuming their own dinners.

Beyond diffusing loneliness and supplying emotional support, community stands a place you may go to ask questions. I took full advantage June 5th, posing a question to our group.

Zachary seeks insights from others for a blog post, "Defending Social Media."

Currently I am working on a blog post, seeking to highlight social media’s positives. Wanting input from others, I asked “How has social media had a positive impact on your life?”

Chris in-part replied she learned a lot about different disabilities and made friends. Should we keep the conversation going?

I agree! Answer as the week’s extend-the-conversation question, “How has social media had a positive impact on your life?” Leave a comment to respond!

Then experience the #CPChatNow community firsthand, joining the chat every Wednesday. The fun begins at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks, "How has social media had a positive impact on your life?" — Reply below in the “Comments.”

#CPChatNow Recap- 05-29-2019

Posted on June 5, 2019 by zacharyfenell

Every Wednesday you can count on the live cerebral palsy Twitter chat #CPChatNow for quality conversation. Or, at least I believe so. Seeing I am #CPChatNow co-host Zachary Fenell, I obviously possess a bias. Allow me to persuade you by providing you your weekly chat recap.

Quality conversation begins with thoughtful people. Those individuals comprise our community’s core. Therefore even during quieter nights #CPChatNow remains enjoyable. Wednesday, May 29th, 2019 proved one such occasion.

Exactly how enjoyable? My co-host Devin Axtman made efforts to multi-task despite his own exciting plans that night.

Devin joined #CPChatNow from Minute Maid Park, where he watched the Cubs and Astros play ball!

Devin joined #CPChatNow from Minute Maid Park, where he watched his Chicago Cubs play the Houston Astros. To use a baseball metaphor, Devin stepped up to the plate during the chat and hit a home run. The homer symbolizes the dialogue Devin sparked.

#CPChatNow participants discuss a recent news story involving insurance and medical supplies.

A feel good news story to many received a contentious outlook within our community. Devin retweeted Fox 5 DC’s post reporting about a local Home Depot building a young boy a walker. In Devin’s opinion the media missed the true story. How can the U.S. healthcare system not provide such basic equipment?

Long-time #CPChatNow regular Blemi added her input, pointing out by paying now you can save later. After all through providing treatments and devices you increase the likelihood individuals with disabilities become contributing society members. Meanwhile I highlighted a line found in the Fox 5 DC piece which struck me as odd.

Zachary points out the article never flat out said the insurance company would not pay for the walker.

I noted the story Devin shared never flat out said the insurance company would not pay for the walker. Instead the parents remained unsure whether the insurance company would cover the cost. This left me wondering, “Couldn’t you call and ask?”

My question left us contemplating the possibilities. Devin suggested perhaps the family was in the middle of the process. Further thought left me contemplating additional prospects. Maybe the parents tried calling, but kept getting put on hold. Or, they wound up talking to unhelpful representatives. Who knows?!

Rather than continuing to speculate, let us talk what we do know. Our personal experiences! Answer for the week’s extend-the-conversation question, “What have your experiences with insurance companies been?”

Comment below to answer. Then remember to join #CPChatNow each and every Wednesday, starting at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks, "What have been your experiences with insurance companies?" — Answer by commenting below!

#CPChatNow Recap- 5-22-2019

Posted on May 29, 2019 by devinaxtman

This past week in #CPChatNow was busy as always. Members discussed their support system, issues with transportation companies and graduation, and more. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

It’s graduation season! Members shared their experiences and difficulties with graduation due to accessibility issues. Chris shared her graduation is at a baseball stadium and Blake shared he was able to successfully navigate his ceremony. I shared my difficulties at my ceremony, but also on a happy note some improvements that were made.

Zach and i discuss my graduation difficulties. zach shared he stayed off to the side in the procession as well because of stairs which caused a girl to knock off her graduation cap seeing him

Next, members talked about issues with transportation, Uber and Lyft and also paratransit. There have been continuing issues with accessing Uber and Lyft for disabled people. This conversation stemmed from an Uber driving refusing to pick up a wheelchair user and Lyft being in an ADA lawsuit and arguing they are not a transportation company.

zach shares an uber driver refused to pick a wheelchair user, i shared lyft said they are not a transportation company in an ADA lawsuit, chris confirmed they consider themselves a tax company

Chris shared she had a continuing wait for paratransit today per usual. Zach shared his hesitancy to sign up for paratransit because of the need to see a neurologist who he hasn’t seen in years.

zach shared he thought of applying for paratransit but he would need to see a neurologist. i tweeted that i felt a doctor could provide that info and zach agreed

Next, members talked about support systems. Chris shared her disability support system has helped her in numerous ways.

chris shared she gets support from her disability community and she is trying to pay it forward

This brings us to our Extend-The-Conversation Question. Let’s talk about support systems. Zach shared in the chat his support system helped him accomplish his goal of being a marathoner. What is the biggest thing your support system has helped you accomplish?

Online community for those with cerebral palsy!