#CPChatNow Recap- 07-06-2022

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Accessibility emerged as a dominant theme during the weekly cerebral palsy (CP) Twitter chat #CPChatNow Wednesday, July 6th, 2022. Let me, chat co-host Zachary Fenell, tell you more. Consider this your boarding call to hop aboard the recap train. Choo, choo!

On second thought, I should probably refrain from using a train reference here. I say that since I am a week late posting this recap. Enough dwelling over metaphorical details, though. We do not want our focus to derail.

Long-time chat regular Blemi put us on the accessibility track when she mentioned spending the weekend at her mother’s place, also known as Blemi’s childhood home. Blemi even filmed a tour for her YouTube channel. Seeing how the video initiated a lot of the conversation for the July 6th, 2022 chat, I will go ahead and embed the video below.

After watching Blemi’s video, I posed a question to the group.

Participants in #CPChatNow discuss steps taken to make their homes more disability friendly.

I asked participants what steps (no pun intended) were taken to make their homes, either childhood or current, more disability friendly. Both Grace and my co-host Devin Axtman mentioned grab bars and railings in their answers. Additionally, Devin said a detachable shower head.

Meanwhile Grace had an adapted walk-in shower replace an old shower/tub combo. What about you? Keep the conversation going and answer for the extend-the-conversation question, “What steps were taken to make your home, either childhood or current, more disability friendly?” Leave your answer in the “Comments” section.

As the discussion continued, participants made an interesting observation about making homes more accessible.

Devin discusses how over the years his grandparents' house has become more disability friendly.

Devin recalled going to his grandparents’ house and observing how much more accessible the house is now compared to the last time he visited. The cause for the change came from Devin’s grandma needing stuff for her cancer battle.

Between Devin’s comments and insights Blemi shared in her video, I drew a conclusion about accessibility. That conclusion, “Accessibility is evergreen. Even if you don’t have any issues today, life can change just like that.”

Do you agree? Speak up in the “Comments” while answering the extend-the-conversation question. Again, the question asks “What steps were taken to make your home, either childhood or current, more disability friendly?”

This week's extend-the-conversation questions asks, "What steps were taken to make your home, either childhood or current, more disability friendly?"

Once you answer, mark your calendar to join #CPChatNow every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

#CPChatNow Recap- 6/29/22

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This past week in #CPChatNow was bustling as always. Members discussed their upcoming book signing, startle reflex from fireworks, and difficulties of getting employers to accept accommodations. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach talked about an upcoming book signing for his awesome book, Slow and Cerebral.

zach talks about excitement for an upcoming book signing

Next, members talked about Involuntary Startle Reflex Day, the 4th of July, and their plans for the fireworks.

zach asks if people have their earplugs ready for the 4th, chris tweets no because she rarely hears fireworks, zach tweets the last time he saw fireworks was at a cleveland baseball game.

Finally, members talked about the difficulty of getting employers to recognize and accept accommodations:

zach tweeted he feels he has to prove himself when an employer accommodates him to justify the accommodation and blemi tweeted about them holding the accommodation against you

zach tweets his supervisor doesn't hold accommodations against him, i tweet accommodations are a legal right and we shouldn't need to worry about them being held against us.

This brings to our Extend-The-Conversation Question: How do you best advocate for yourself?

Thanks for reading and please join us on Twitter at #CPChatNow at 8 Eastern.

-Devin

#CPChatNow Recap- 06-22-2022

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Wednesday after Wednesday participants in the weekly cerebral palsy (CP) Twitter chat #CPChatNow enjoy a caring and understanding environment. Such traits remained on display Wednesday, June 22nd, 2022. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

First though, allow me to apologize for the tardy recap. Rather than wasting more time explaining the recap’s lateness, perhaps I should just get into the highlights from the June 22nd, 2022 chat. Shall we?

Participants in #CPChatNow offer each other a supportive environment.

Seeking to start the night off on a positive note, I asked participants to share a highlight from the previous week. Blemi unfortunately reported, “No highlights this week.” She would go on to explain, “It’s been a tough few ones.”

Hannah ended up expressing similar sentiments, indicating Hannah also had no highlights for the week. However, the two did provide each other support. Blemi in-particular reminded everyone, “It’s okay to not be okay too.”

As the dialogue continued, participants discovered a momentary escape from their woes through discussing other subjects.

Participants in #CPChatNow discuss crocs and other footwear.

Daring to delve into a “controversial topic,” Hannah shared her new rainbow Mickey crocs. The footwear reminds her of her late father. Plus, Hannah noted the green Mickey, “made me think of y’all.”

Others responded, sharing their own love for crocs. Blemi detailing she has, “pink sparkly crocs.” Meanwhile Chris said her crocs are green. More importantly, Chris added, “If I’m having a bad spasticity day they’re all I can wear.” Further reason to heed Blemi’s call to, “rock the crocs!”

Keeping the conversation rocking ahead, focus turned to important cerebral palsy research.

#CPChatNow participants discuss work being done by Cerebral Palsy Research Network.

I retweeted a link to a webinar Veronica originally posted with our hashtag. You could watch the webinar, “Grip Strength and Body Composition in Cerebral Palsy Webinar with Ed Hurvitz MD,” below.

In addition to webinars like the above one, Cerebral Palsy Research Network (CPRN) has a program called MyCP. Chris shared a link with more information. Take a look for yourself and decide if the MyCP program might interest you.

Also, keep the discussion going by watching the webinar and answering for the extend-the-conversation question, “What was your main takeaway from the ‘Grip Strength and Body Composition in Cerebral Palsy Webinar’?” Answer below!

Afterwards mark your calendars to join us each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

Watch the webinar linked to above and then answer for the week's extend-the-conversation question, "What was your main takeaway from the webinar?"
Answer below!

#CPChatNow Recap- 6/15/22

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This past week in #CPChatNow was bustling as always. Members talked about acceptance of CP, aging with CP, and the importance of walking. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Stephen asked Zach when he accepted his CP and this led to a conversation about adjustment to disability:

stephen asks zach how long it took to accept his cp, zach tweeted he was 18 or 19, but it still can be a work in progress, i tweeted i don't think someone is ever fully adjusted to cp as life happens

Next, talk turned to a common topic among #CPChatNow members, aging with CP, after Chris shared an article about functional decline.

chris tweeted about an article about functional decline with cp

zach tweets about kids with cp having access to state and federal programs with insurance and a deficit for adolescents and adults, chris tweeted even people recognizing CP impacts adults differently and causes sorts of problems which we have to start teaching people

Finally, talk turned to the importance (or lack thereof) of walking. Members discussed the importance of staying active while also listening to their body as aging happens.

zach tweets about me saying not walking isn't bad and that walking can be bad if it puts extra stress on the body in order to walk independently. chris speculates this could have led to her arthritis, but she expressed frustration that doctors emphasize activity. zach tweets there is a need for balance with activity being important and nutrition being another piece with sleep also being important.
chris tweets she felt seen by the article she shared and with the struggles and frustration of watching her body change after being told it wouldn't while planning for life one way and cp impacting her body differently. grace tweets that her doctors overemphasize walking and walking without devices where they promise stability if you do that which not everyone can.

This brings us to our Extend-The-Conversation Question: What are some aspects of functional decline you have noticed with CP and aging? Please share your answers in the comments.

Thanks for reading and please join us tonight on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 06-08-2022

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Week in and week out those in the cerebral palsy (CP) community gather on Twitter Wednesday night for the live Twitter chat #CPChatNow. Wednesday, June 8th, 2022 proved no different. To delve into the details, I am chat co-host Zachary Fenell. Come join me for your weekly recap.

One topic which seemed popular revolved around spasticity.

Participants in #CPChatNow answer if they feel their spasticity increases when they feel like they are being watched.

Spasticity arose as a subject when I asked participants if they felt like their spasticity increases when they feel like they are being watched. To clarify what I meant by the question, I recalled an example. Years ago while signing a waiver, my hand began shaking more than usual. Alessandro let me know I was not alone by enthusiastically replying, “Hell yes #cpchatnow.”

Meanwhile, Timmy stated his spasticity increases when he thinks about it. Chris offered additional insights noting she knows, “spasticity changes and is pretty sensitive to happenings.” Keep the conversation going and answer for the week’s extend-the-conversation question, “What do you notice changes your CP’s spasticity levels?” Answer in the “Comments” section.

First though, allow me to finish recapping the discussion from June 8th, 2022. Besides spasticity, participants discussed their favorite social media platforms.

The #CPChatNow community discusses their favorite social media platforms.

Curious, I asked participants to name their favorite social media platforms. Jen said her top two are Twitter and Instagram. Replying to Jen, I explained I find Twitter, “good for getting to meet people you don’t know yet.” Continuing, I complimented Facebook as, “good for keeping in touch with people you already know.”

Sentiments Chris agreed with, mentioning thanks to Twitter she has, “met cool people and learned all kinds of things.” The fondness for Twitter showed up elsewhere in the chat too.

Stephen expresses his love for everybody in the #CPChatNow community.

Indirectly showing admiration for Twitter, Stephen expressed how much he loves everybody in the #CPChatNow community. Experience the community for yourself by joining us each and every Wednesday. The fun kicks off at 8pm ET.

In the meantime, remember to answer the week’s extend-the-conversation question, “What do you notice changes your CP’s spasticity levels?”

This week's extend-the-conversation question asks, "What do you notice changes your CP's spasticity levels?
Answer below.

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

-Zachary

#CPChatNow Recap- 06-01-2022

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Friendly vibes emanated from the cerebral palsy (CP) Twitter chat #CPChatNow Wednesday, June 1st, 2022. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

Early in the evening participants discussed housework.

Participants in #CPChatNow discuss their favorite and least favorite housework.

Housework arose as a subject after Veronica mentioned spending the day doing such work. Curious, I asked everyone about their favorite and least favorite housework. Answering my own question, I said dusting and cleaning dishes are my favorite housework. On the opposite end, putting on bedsheets is my least favorite because the corners always seem to come undone. Frustrating!

Meanwhile Stephen said his favorite housework is taking out the trash. Unlike Stephen and myself, Veronica said she had no favorite. As far as least favorites go, Veronica named dishes and laundry. She explained, “They’re never actually done.” A truth, seeing how we are always dirtying more dishes and clothes.

As the night continued, so did the friendly dialogue.

Alessandro and Zachary discuss Alessandro's Jordan's collection.

Alessandro shared he now has 100 pairs of retro Jordan’s in his collection. Looking to learn more, I asked Alessandro about his collection. When did he start his collection? What compelled him to start the collection? A big part turned out to involve the fact Alessandro grew up in Chicago in the 90s, meaning, “Jordan is everything.”

What about you though? Answer for the week’s extend-the-conversation question, “What do you collect? What made you start the collection?”

Answer below in the “Comments.” Afterwards, mark your calendar to join #CPChatNow each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks, "What do you collect? What made you start the collection?"
Answer below!

#CPChatNow Recap-5/25

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The #CPChatNow recap is back! This past week in #CPChatNow was rocking as always. Members discussed things like what they do when they’re nervous, attending comic cons, recommendations for TV shows, and if they have ever felt “normal.” This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Stephen asked what members do when they are feeling nervous.

stephen asks how members deal with feeling nervous, zach tweets the answer depends on why he's nervous, and that the nerves might be a good thing and that they might be trying something new, stepehn tweets he is going back to the exceptional foundation, jen tweets she tries to breathe

Next, Jen talks about a comic con she is going to go to and she asked for any tips people have.

jen tweets she is going to a comic con and asks if anyone has any tips, i ask if they have any ADA lines and advised her to check the website

zach advises to jen to make a list of people she wants to meet the most and see them first and also do what is comfortable social distance wise

Next, Zach asks if anyone has recommendations for new TV shows to watch.

zach asks if anyone has recommendations for tv shows, i recommend severance on apple tv and as we see it on prime
grace lapointe recommends orphan black on prime and tweeted about an essay she wrote that is her pinned tweet, zach tweeted it sounds compelling and he would read the essay after watching the show

Finally, Zach asked if members had a moment where they wondered if this is what “normal people” feel like:

zach asks if members have ever had a moment where they thought this is how normal people feel and this came to his mind after he stretched his hamstrings with his knee immobilizer/cast.

chris tweets when wakes up feeling a little rested and that lasts 10 minutes, zach tweets that having a sleeping disorder must be a living nightmare, i tweet that i can't say i have, but i don't dwell on it

This brings us to our Extend-The-Conversation Question: What is your favorite TV show of all time? Thanks for reading and join us each Wednesday at 8 Eastern on #CPChatNow at Twitter.

-Devin

#CPChatNow Recap- 05-11-2022

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Each Wednesday participants in the cerebral palsy Twitter chat #CPChatNow gather to enjoy dialogue and community. Wednesday, May 11th, 2022 proved no different. To tell you more, I am chat co-host Zachary Fenell. All aboard for your weekly recap!

Personally, my co-host Devin Axtman helped to kick the night off on a positive note for me.

Devin offers Zachary feedback on Zachary's new book Slow and Cerebral.

The positivity generated from Devin giving me feedback on my new book Slow and Cerebral. Specifically, Devin commented, “It’s such a good read!” Intrigued by the discussion, Stephen wanted to know where you can get a copy. Slow and Cerebral is available on Amazon in the United States, as well as internationally in countries like Canada, Australia, and the United Kingdom. I mention those countries because our community includes participants living there.

Slow and Cerebral is a memoir about accomplishing the “unreasonable.” For me, that meant not letting my cerebral palsy stop me from becoming a marathoner. An accomplishment only made possible by facing challenges. Fittingly, as the chat continued, we discussed challenges.

#CPChatNow participants discuss the challenges they face due to their disabilities.

Initiating the challenges discussion, I asked participants, “What do you find most challenging about having cerebral palsy (or whatever disability you have)? How do you handle this challenge?” Answers varied. For instance, Chris mentioned as a CP based challenge, how much her spasticity varies day to day. To handle this Chris stretches, uses heat, trigger point release, and massages her sore spots.

Meanwhile AcquiDis replied, “Living with and doing well with a medically acquired disability.” AcquiDis continued, noting doing well with a medically acquired disability, “is a contradiction to that which is expected for this condition throughout history.” Adding, “It (cerebral palsy) is often ‘feared’ and misunderstood because of its difference.”

AcquiDis’s sentiments resonated with me. I suggested that fears and misunderstandings about cerebral palsy are based off misconceptions and stereotypes. What do you think? Answer for the week’s extend-the-conversation question, “What do you think causes people to be fearful and misunderstanding of disabilities?”

This week's extend-the-conversation question asks, "What do you think causes people to be fearful and misunderstanding of disabilities?"
Answer in the “Comments.”

To let us end on a positive note, also add “How could we help dispel the fear and misunderstanding surrounding disability?” Leave your ideas in the “Comments.”

Afterwards, mark your calendar for #CPChatNow. Our Twitter chat happens every Wednesday, starting at 8pm ET.

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

-Zachary

#CPChatNow Recap- 5/4/22

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The first week of May in #CPChatNow was hopping as always. Members discussed about honoring their family, Zach’s new book, shoes and CP, and exercises and CP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. Hop on the recap train, all aboard!

First, I want to recognize and honor Hannah’s dad’s memory. Hannah is a valued member of #CPChatNow and one of the toughest people I know. We love you Hannah!

hannah tweeted she is sad because it is 2 years since her dad died, the tweet includes pictures of her dad, her dog, and a picture of hannah

zach tweets that 2 years is hard to believe and it seems like it's just months ago since he was enjoying cone in bill's car and it took awhile to realize both their dads were named bill. he also tweeted he loves the photos of his dad and the smile captures his personality beautifully

Next, I would love to promote Zach’s book on his journey to becoming a marathoner with CP, Slow and Cerebral. You can find it here.

i tweet my excitement about getting zach's book, there is an image of his book slow and cerebral

Next, Stephen asked about a common annoyance for people with CP, shoes. Stephen asked people how many shoes they go through in a given year. Alessandro also shared his Air Jordan collection.

stephen asked how many pairs of shoes people get in a year, veronica said one every 3 or 4 years because she hates shopping, i tweet that i have one pair of old man velcro shoes that lasts 2-3 years, zach tweets he has one pair per season, alessandro says he has too many because he collects Jordan's

Finally, members discussed another common topic with CP, CP friendly exercises. Veronica also shared a tremendous link with some resources.

i ask how people learn cp friendly exercises, zach tweets he learned them in PT, but he has learned some online, veronica also tweets pt and thomas tweeted about swimming and pt

This brings us to the week’s Extend-The-Conversation Question: What is your favorite exercise to help your CP?

extend-the-conversation question graphic "What is your favorite exercise to help with you CP? Multicolored #CPChatNow logo in upper right hand corner with image of a man doing stretches

Thanks for joining us on this week’s recap and join us tomorrow and every Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 04-27-2022

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Accomplishment remained a key theme during the cerebral palsy Twitter chat #CPChatNow Wednesday, April 27th, 2022. To tell you more, I am chat co-host Zachary Fenell. Come and join me for your weekly recap.

The accomplishment theme began with members in our community helping me celebrate an achievement.

Participants in #CPChatNow congratulate Zachary on the release of his new book Slow and Cerebral.

My achievement I teased in the chat’s opening minutes, saying “I’ve had an exciting week.” Although, Blemi and Veronica had already seen the news. They both sent congratulatory messages my way. For those who had not seen my news, I quickly shared the reason for my excitement.

Zachary announces his new book, Slow and Cerebral, is now available.

Prior to April 27th I announced through my social media outlets that I had released my new memoir, Slow and Cerebral. The book details how I did not let my CP stop me from becoming a marathoner. Thanks to Amazon, Slow and Cerebral is available in multiple countries, including the United States, Canada, and United Kingdom.

Thank you for tolerating my cheap plug. Now let me resume recapping the April 27th chat. Stephen kept the conversation focused on accomplishments by asking a question.

#CPChatNow participants answer Stephen's question, "Do you think that when you have something that able people have that is a big accomplishment?"

Specifically, Stephen asked, “Do you think that when you have something that able people have that is a big accomplishment?” I answered, offering my opinion on accomplishments. In my opinion, “Big accomplishments should be measured in context with the person achieving them, not in comparison to who else has accomplished the same thing.”

Additionally, my co-host Devin Axtman responded to Stephen’s question. Devin said, “Depends on what it is.” Chris would share similar sentiments.

Chris gives her insights on accomplishments and how they can be perceived as inspiring.

As Chris noted, “There are things that are universally big accomplishments.” She continued, correlating how feats achieved by people with disabilities get praised as “inspiring.” Nonetheless, Chris specified “But getting up and going to work or having a relationship… Those things are not inspiring, because they are expected.”

Said discussion progressed to highlight how setting goals to coincide with societal expectations could end up damaging. Let us stay positive though, and keep the conversation going by answering for the week’s extend-the-conversation question, “What do you consider your biggest accomplishment?”

This week's extend-the-conversation question asks, "What do you consider your biggest accomplishment?"
Answer in the “Comments.”

After answering, make sure to mark your calendar for #CPChatNow each and every Wednesday. The fun begins at 8pm ET.

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

-Zachary