#CPChatNow Recap- 8/3/2022

#CPChatNow brought in August with a lively chat about things such as flying tips, who is their best friend and why, and how “You Know You Have CP When.” This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, Zach asked if members had tips for flying with a disability and I shared some of my favorites.

zach asks about tips for flying with a disability. i tweeted i always check a bag and bring my wheelchair or use one of the airport ones, but most importantly i pay for precheck.

Next, Stephen asked members who their best friend is and why.

stephen shares his best friend megan tidwell means more than word's can say and she's done things for him that he will never forget.
zach tweets his best friend from high school is his friend rob and he interviewed him for his youtube channel. veronica tweets she went to a small school with a class of 8 students once of which was her twin sister, but she is hoping to see friends soon.

veronica tweeted about her twin sister being a built in best friend and her husband is a big support. zach tweets that is the sign of a healthy relationship to call your husband your best friend.

Finally, Zach and Veronica talked about some ways you know you have CP when.

zach asks members to finish the sentence you know you have cp when. veronica tweets you know you have cp when you do everything with one hand. zach tweets you know you have cp when your bad dreams revolve around an escalator.

Let’s Extend-The-Conversation! Tell us some ways you know you have CP when.

extend the conversation graphic with #cpchatnow logo with tell us some ways you know you have CP when and a picture of a stick figure

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

-Devin

#CPChatNow Recap- 07-27-2022

Various subjects came and went Wednesday, July 27th, 2022 during the live cerebral palsy Twitter chat #CPChatNow. Here to tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

Early in the night I issued an important disclaimer.

Zachary warns #CPChatNow he is recording his participation in the chat that night in order to create a "How to Participate in a Twitter Chat" video for his YouTube channel.

I warned participants I planned to experiment with recording my participation in the chat that night in order to create a YouTube video with step by step instructions on how to participate in Twitter chats. The experiment proved successful as you will see below from my video “How to Participate in a Twitter Chat Using a Computer.”

Regarding topics discussed July 27th, Chris mentioned assistive technology (AT). In-particular Chris talked about using grabbers for assistance in getting dressed. I recalled trying to use grabbers following my surgery aftermath at 14 years old. My comment inadvertently shifted the dialogue’s focus to surgery experiences.

Members in the #CPChatNow community discuss their experiences with different surgeries.

Chris recalled my co-host Devin Axtman also underwent major surgery when younger. Devin did his best to fit his surgical history into one tweet, saying, “I have had about 15 ish surgeries of different levels. The biggest one was where they sawed my femur and tibia in half and put them back together with a plate.”

Besides Devin, Chris and I discussed our histories with surgeries. Nothing too shocking, at least in comparison to what another chat regular had to say.

Blemi shares a horrifying surgery experience she had.

Replying to Devin noting he had multiple heel cord lengthening operations, Blemi shared, “I’ve had it done twice. The second time I was awake and something happened…” Consequently, Blemi couldn’t walk for almost a year.

Interestingly enough, walking arose elsewhere in the chat too.

The #CPChatNow community discusses what things people, especially medical professionals, get wrong about cerebral palsy.

Remembering back to a tweet Blemi posted within the last week, Chris echoed how walking independently should not necessarily be the end goal. Like Chris would go on to say, “I think maybe something about mobility devices or other adaptive equipment. I kind of feel like it’s implied that you’re ‘giving up’ if you use them. When really they’re tools.”

Those comments came from Chris when answering her own question about what misconception or thing do people get wrong about CP, adding a focus on medical professionals since, “that’s where that often comes from.”

Meanwhile Devin answered, “That it (CP) has no impact on aging.” What about you? How would you answer the question? Let us make the week’s extend-the-conversation question, “What misconception or thing do people, specifically medical professionals, get wrong about CP?”

Respond in the “Comments” below. Afterwards, mark your calendars to join us each and every Wednesday on Twitter starting at 8pm ET. If you need directions on how to participate in a Twitter chat, checkout my tutorial video, “How to Participate in a Twitter Chat Using a Computer.”

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

-Zachary

Answer for the week's extend-the-conversation question, "What misconception or thing do people, specifically medical professionals, get wrong about CP?"
Answer below!

#CPChatNow Recap- 7/20/2022

This past week in #CPChatNow was buzzing as always. Members discussed having COVID, annoying comments they receive in public, and their goals for the rest of 2022. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I would like to share a story that Spectrum 1 News in Cleveland did about #CPChatNow co-host, Zachary Fennell, that I was happy to participate in. The story was about his time as a marathoner and his book Slow and Cerebral.

zach shares the spectrum 1 news story about him walking and running and his new book slow and cerebral. there is an image of zach in green shirt and blue baseball cap with blue shorts walking

Next, various members have discussed issues they are having with COVID. I discussed the difficulties with my lingering cough and balance.

Next, Zach talked about member’s goals for the rest of the year:

zach asks about goals for 2022 and tweets he would like to do recaps in a more timely fashion, updating facebook/website cover photos, posting to facebook page more
i tweet my goals are to be more patient and to be a better husband, zach tweets patience is something everyone can be better with and asks whether i can spend more quality time or be a better listener.

Finally, Zach asked how often members experience annoying comments about their disability.

zach asks how often members experience annoying comments, blemi tweets every time she is out in public and zach expressed surprise, i tweeted i do not too much, but maybe because i'm used to it or a wheelchair is more accepted

This brings us to our Extend-The-Conversation-Question: What are your strategies for dealing with annoying comments? Please join us tonight on Twitter at #CPChatNow at 8 Eastern!

-Devin

#CPChatNow Recap- 07-06-2022

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

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

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

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

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

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

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