Tag Archives: cerebral palsy community

#CPChatNow Recap- 01-11-2023

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Various topics came and went during the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, January 11th, 2023. To tell you more, I am chat co-host Zachary Fenell. Please join me for your weekly recap.

Early on in the evening, communal vibes strongly emanated.

Hannah stops by #CPChatNow to say hi.

Long-time participant Hannah stopped in to say she missed us all, but physically she did not feel up to participating. I know I am not alone in looking forward to the next time Hannah joins us.

In the meantime, the chat went on.

Zachary asks #CPChatNow how frequently they stretch and what muscles they stretch the most.

To prompt discussion, I asked our community, “How often do you stretch? What muscles do you have to stretch the most?” My co-host Devin Axtman responded, “Not enough that’s for sure!” Admitting, “When I’m feeling tight.” Regarding what muscles he has to stretch the most, Devin said “hamstrings and Achilles mostly.”

Personally, I resonated with Devin’s experiences. Also admitting, “I know I should stretch daily but I also end up stretching when I get tight.” In retrospect stretching daily sounds like a good goal to set. Appropriate, because January 11th, 2023, talk turned to goal setting.

#CPChatNow participants offer advice on setting goals.

The goal setting subject arose after I asked our community, “Has anyone set goals for 2023 to help you be healthier?” Devin replied, “I feel like I’m not good at this. Anyone have tips for setting goals you stick with?”

Timmy and I offered similar advice. I recommended setting measurable goals. For example, in 2023 I am striving to drink two bottles of water for every cup of coffee I consume. Additionally, I suggested making your goal into a habit, noting, “Say you want to read more. Even reading 10 pages of a book a day will eventually add up.”

Simultaneously, Timmy advised, “Make it a habit or use the SMART approach.” Besides making a goal measurable, the SMART approach involves setting goals that are specific, achievable, realistic, and timely.

Another helpful tidbit emerged as the goal setting discussion progressed.

Zachary and Devin discus another key component to goal setting.

Through the dialogue, Devin revealed, “I will slip for a day and feel guilty and then not get back to it.” A temptation I know all too well. However, over time I learned, “The key is not beating yourself up over yesterday’s failures but rather focusing on righting the track today.” Put that wisdom on display and answer for the week’s extend-the-conversation question, “What will you accomplish today?”

Share below! Then before going to work away on your goal, set a reminder to join us for #CPChatNow each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

Answer for the extend-the-conversation question, "What will you accomplish today?"

Answer below!

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#CPChatNow Recap- 12-14-2022

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Wednesday after Wednesday people in the cerebral palsy (CP) community gather on Twitter for the live weekly chat #CPChatNow. To tell you all about the chat from Wednesday, December 14th, 2022, I am chat co-host Zachary Fenell. Let us get on with the recap!

An innate ability to understand each other remains one characteristic which has solidified our community. We showcased said understanding December 14th.

Timmy jokes about tripping on his way to the lab in the morning, but not spilling a drop of coffee.

Utilizing our hashtag, Timmy shared some humorous bad news and good news. The bad news, he tripped on his way to the lab in the morning. For the good news, Timmy revealed he did not spill a drop of his coffee! His comedic tweet received eight likes.

Transitioning to a more serious note, Stephen sparked dialogue with a question.

#CPChatNow participants answer Stephen's question, "What is the one thing that you (are) proud of this year?"

Stephen asked the chat, “What is the one thing you (are) proud of this year?” Veronica answered, “My youngest graduated from ASU.” Meanwhile, I stated, “The release of Slow and Cerebral, and the five five-star reviews Amazon readers have given the book.” Replying himself, Stephen shared his pride for, “going back to the exceptional foundation and my involvement in CPChatNow.”

As the night continued, discussion turned to seeing differences positively.

Participants in #CPChatNow discuss how being different has been a good thing for them.

Admittedly, I brought up the topic when sharing a cartoon my uncle sent my way. Within the cartoon a single lopsided Christmas tree stands in a field alongside many tree stumps. A thought bubble with the words, “Hey! Maybe being different is a good thing!” hangs above the lopsided tree. Inspired by the comic, I asked, “How has being different been a good thing for you?”

Answering myself, I explained, “My differences have taught me the importance of representation. Plus CP and my physical inabilities led me to writing and where I am now.” AcquiDis also answered, saying, “Difference causes the individual to reflect of their own norms whether they be in relation to disability, gender, race.”

How about you? Answer for the extend-the-conversation question, “How has being different been a good thing for you?”

Answer below in the comments. Afterwards, set a reminder to join us every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

The extend-the-conversation question asks, "How has being different been a good thing for you?"

Celebrating Nine Years of Community!

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Happy birthday to everyone in the #CPChatNow community! Saturday, December 3rd, 2022 marked nine years since our first ever Twitter chat. Hence my, #CPChatNow co-founder and co-host Zachary Fenell, reference to December 3rd as our chat’s, “birthday.” Somebody else might prefer the traditional term, “anniversary.” No matter the terminology used, you will probably agree nine years together remains an occasion to celebrate.

Such a celebration has occurred over the last month too. Despite my co-host Devin Axtman and I not getting out our weekly recaps, the chat continues to meet each Wednesday on Twitter, 8pm ET. On Wednesday, November 23rd I mentioned the upcoming nine-year milestone.

Zachary and Chris are wowed by the fact #CPChatNow has been around for nine years.

The fact nine years has passed since our community’s first chat, wowed an enthusiastic fixture in our community, Chris. Reacting to the milestone, Chris tweeted, “9!?!?! Omg! I guess it has been, but wow!” Retweeting Chris’s response, I thanked everyone who has given our community staying power. Those individuals include both long-time community members and new faces. One new face in-particular shared his own #CPChatNow milestone.

#CPChatNow celebrates Stephen's one year anniversary as part of the community.

During the chat Wednesday, November 16th Stephen reminisced about being a part of #CPChatNow for one year. Belonging to our community can prove transformative. A notion supported by conversation held during our weekly chat Wednesday, November 30th.

Zachary asks #CPChatNow participants to fill in the blank and answer, "Thanks to #CPChatNow, I am more (blank)."
Zachary and Devin discuss further ways #CPChatNow has impacted their lives.

With December 3rd approaching, I asked the community to fill in the blank and answer, “Thanks to #CPChatNow, I am more _____.” Devin replied, saying our community has made him more, “confident in my disability identity.” Devin would go on to discuss how #CPChatNow has allowed us to meet, “super cool people that have done stuff with CP,” and “meet people (with CP) all over the country and even the world.”

What about you? Keep the conversation going, and fill in the blank. “Thanks to #CPChatNow, I am more ________.” Even if you do not participate in the actual Twitter chat, feel free to answer. If you read the recaps, you are part of our community. Let us know what about the recaps keeps bringing you back.

Beyond celebrating the past nine years, our community took time to contemplate our future.

Zachary asks participants if they have any concerns about Twitter's future.

Jen answers if she has any concerns about Twitter's new ownership.

Considering Twitter serves as our main platform and 2022 saw a big change in Twitter’s ownership, on Wednesday, November 9th I asked members if anyone had concerns about the platform’s future. Both Chris and Jen expressed concern Twitter will cost money to use. Chris added he, “joined Mastodon just in case Twitter stops being free to use.”

Though, as long as Twitter stays free, you can count on joining us each and every Wednesday on the platform. The fun starts at 8pm ET. Before then, remember to answer the extend-the-conversation question, “Thanks to #CPChatNow, I am more ______.” Fill in the blank below!

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

-Zachary

Fill in the blank to answer the extend-the-conversation question, "Thanks to #CPChatNow, I am more ______."

#CPChatNow Recap- 10-12-2022

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Participants who joined the cerebral palsy (CP) Twitter chat #CPChatNow Wednesday, October 12th, 2022 enjoyed an engaging night of conversation. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

Early in the evening our community bonded over different interests.

Participants in the #CPChatNow community bond over mascot Gritty appearing at WWE Extreme Rules.

My co-host Devin Axtman asked long-time regular and mascot enthusiast Jen, if she saw that Philadelphia Flyers mascot Gritty appeared at WWE Extreme Rules. Knowing Devin and I like wrestling Jen replied, “That’s what I was gonna show y’all.”

Such an ability to connect over interests outside CP helps reinforce our community’s roots. Although, the conversation did naturally transition to CP-related matters.

Those in the #CPChatNow community discuss a current events article about brothers Pierce and Leo Olsen.

Cerebral palsy centered dialogue sparked after I shared a recent story from patch.com, “NJ Teen Got His Little Brother, With Cerebral Palsy, On Football Team.” Devin related to the story, recalling, “That’s exactly what I did, help with film!”

Meanwhile, Chris approached the article skeptically. Her skepticism revolving around the headline’s “inspirational porn” feel. This concern left me posing a question.

Zachary asks #CPChatNow participants to come up with a better title for the article about the Olsen brothers.

In the spirit of fun I asked everyone, “What headline would you have given the story?” Devin suggested, “A Team Adds to a Brotherhood.” Then Devin put the pressure on me, pointing out, “You’re the writer Zach.”

Zachary shares his headline for the article about the Olsen brothers.

For a suggested headline, I recommended, “Teen Brothers Become Unlikely Teammates.” What about you though? Checkout the piece about Pierce and Leo Olsen and then answer for the week’s extend-the-conversation question, “What headline would you give the news story about the Olsen brothers?“

Leave your answer in the “Comments.” Afterwards, make sure you set a reminder to join us each and every Wednesday on Twitter. The chat begins at 8pm ET.

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

-Zachary

For this week's extend-the-conversation question, let us know, "What headline would you give the news story about the Olsen brothers?"
Answer below!

#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- 3/16/2022

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This past week in #CPChatNow was exciting as always. Members discussed routines they need to get back to, interests CP has contributed to, and what they would do if they did not have CP for a week. 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 an update about Zach’s upcoming book, Slow and Cerebral.

zack tweeted he is working on edits for his book, slow and cerebral. he hopes to be done by sunday night.

Members also talked about routines they need to get back into.

zach asked about routines members need to get back into. chris tweeted she needs to start physical therapy and being more active. stephen tweeted he needs to start walking

Members also discussed interests they feel CP has contributed to.

zach asks how cp has influenced people's interests. blemi tweeted she feels she wouldn't be much of a reader. zach tweeted he feels cp led to him being a writer and to grow as a writer. he tweeted this goes back to his interest in cleveland baseball once he realized he wouldn't play baseball. he felt writing would be the next best thing.

Finally, members discussed what they would do if they didn’t have CP for a week.

stephen asked what members would do if they did not have cp for a week

This brings us to our Extend-The-Conversation Question: What would you do if you didn’t have CP?

extend-the-question graphic: what would you do if you didn't have cp for a week? An image of the days of the week written on sticky notes in front of a gray background

#CPChatNow Recap- 10/13/2021

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This past week in #CPChatNow was hopping as always. Members discussed showing off their new walker, disability related books they would recommend, and the reasons they read. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I wanted to give kudos to Blemi for showing off her new pink walker to help promote her Youtube channel. Making mobility aids “cool” is a challenge for disabled people, so any time we can it’s worthy of praise!

zach asks if blemi has had a chance to show off her pink walker, blemi tweeted she did a photo shoot with it with an instagram account that wants to feature her. she said it is a big deal because she used to only take photos from the waist up. zach tweeted it is an incredible feeling when others reach out and they want to partner with you or feature you.

Next, the rest of the chat turned to books and reading. This may have been inspired by Zach finishing the manuscript on his latest book! First, Zach asked members what disability related book they would host for a discussion.

zach asks what disability related book members would choose for a discussion, i tweeted john quinn's or judy huemann's book. huemann's book illustrates disability history and john explains cp so well. zach tweets john's book is one of his favorite books period, blemi tweets sitting pretty by Rebeckah Taussig

Finally, talk turned to the reasons people read. Members shared a variety of reasons. Also, you can find Emily Ladau’s book Blemi references here.

zach asks why members read and offers some reasons such as escape from reality, self-improvement, inspiration. blemi tweets she reads for the pleasure of it. zach tweeted he read for multiple reasons, sometimes escape from reality, others better skills (finance), or disability related material because they open him to other's experiences. blemi tweeted she picked up Emily Ladau's book Demystifying Disability
zach tweets he will eventually get to emily's book, but he has other things on his list. i tweet i mostly escape reality, but i like current event books.
extend-the-conversation question graphic: multi-colored #CPChatNow logo in upper right hand corner, extend-the-conversation question in green, what is your favorite book of all time? above a picture of books on a shelf, #CPCHATNOW in white letters in front of a green background on the bottom.

Please share your answers to the Extend-The-Conversation-Question in the comments and join us each Wednesday on Twitter at #CPChatNow at 8 Eastern!

-Devin

#CPChatNow Recap- 09-15-2021

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Celebratory and reflective vibes emanated from the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, September 15th, 2021. Allow me, chat co-host Zachary Fenell, tell you more via your weekly recap. Let the celebration begin!

Early on in the evening I offered a reason to celebrate by sharing some good news.

Zachary shares the news of his new job!

September 15th marked the night before my last day at Beachwood Public Library. Participants congratulated me as I shared I would soon begin as a branch services clerk at the South Euclid Public Library. Along with the congratulations came curiosity.

Zachary details some of the responsibilities his new position entails.

My co-host Devin Axtman asked me about the differences in my new position. All the discussion about my new job led long-time chat regular Blemi to make an observation.

Blemi comments about how far people in the #CPChatNow community have come since the chat first started.

Blemi commented we in the #CPChatNow community have come a long way since the chat’s beginnings. Her comment reminded me that December will mark our eight-year anniversary! Said realization inspired me to ask a question.

Devin answers what advice he would give his pre-CPChatNow self.
Blemi shares what advice she would give her pre-CPChatNow self.

Getting creative, I asked participants what advice or wisdom their 2021 self would give their pre-CPChatNow self. Devin responded “You can’t hurry love.” Meanwhile Blemi replied “Be patient and enjoy what you have instead of always living for the future.”

What about you? Keep the conversation going and answer for the week’s extend-the-conversation question “What wisdom or advice would your 2021 self give your pre-CPChatNow self?”

Leave your reply in the comments! Afterwards set a reminder to join us on Twitter each and every Wednesday. The party begins at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks "What wisdom or advice would your 2021 self give your pre-CPChatNow self?"
Answer below!

#CPChatNow Recap- 07-21-2021

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Communal vibes strongly emanated from the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, July 21st, 2021. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

Yearning for the community our Twitter chat provides remained present prior to Wednesday.

Long-time #CPChatNow regular Blemi tweets her eagerness for Wednesday to arrive.

On Tuesday, July 20th long-time chat regular Blemi took to Twitter, wishing the day was Wednesday. All so she could work through the lots of stuff on her mind. After a 24-hour wait, Blemi had her chance to seek support from fellow chat participants.

In accordance with our recap rules to not highlight tweets featuring sensitive life events, I will avoid delving further into that conversation. Although, I can say more then Blemi received support from our community July 21st.

Members in the #CPChatNow community congratulate Alessandro on getting a new job.

Alessandro possessed some exciting news. He officially got a new job! Others in the chat offered congratulatory messages to celebrate.

Elsewhere in the night’s dialogue, talk turned to the spasticity involved in spastic cerebral palsy.

Various participants answer how they would describe their spasticity to others.

In-particular I asked participants how they would describe their spasticity to others. The responses varied. Veronica noted not really getting asked about her spasticity. Meanwhile Blemi replied “I tell them my neurons are always firing making me stiff.” She admitted not knowing whether that stands 100% accurate, but she finds the answer easy to explain.

Additionally, Stacey supplied an easy to understand reply saying if you put anything in the crook of her arm, you will need the jaws of life to get it out. Opposingly, Lorna stated she does not explain it. It’s just that if she thinks too much about moving she can’t move. Lorna also commented she does tell people not to use the word “spaz.”

Regarding managing spasticity, Blemi mentioned a difference maker she recently began using.

Blemi talks about using a magnesium supplement to help with muscle stiffness.

By using a magnesium supplement, Blemi has felt a difference in her stiffness. What about you, though? Answer for the week’s extend-the-conversation question, “How do you manage your spasticity?” Respond in the “Comments” section.

Answer for the week's extend-the-conversation question, "How do you manage your spasticity?"

Please note, what works for one person might not work for another. So if somebody’s answer intrigues you, discuss as needed with the appropriate medical professionals. Let them know you found the suggestion thanks to us at #CPChatNow. We meet each and every Wednesday on Twitter, starting at 8pm ET. Make sure to mark your calendars.

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

-Zachary

#CPChatNow Recap- 7/14/2021

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This past week in #CPChatNow was hopping as always. Members discussed seeing themselves walking, worries about falling, and what Disability Pride Month means to them. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, my wedding and me walking up the aisle sparked conversation about walking. I was surprised when I saw myself walking on my wedding highlight video. Members seemed to share the same sentiments.

i ask if anyone else gets surprised with how they walk. zach tweets its a jarring experience. jen tweets she rarely sees herself walking, but yes and she has cringed when she sees herself on video.
zach tweets seeing himself walking is less jarring due to seeing himself in drive thru window, alessandro compared himself to a newborn giraffe, zach compared himself to a drunken stumble. chris tweets the worst thing is hearing herself speak and she knows why she is asked if she is australian, blemi tweets it shocks and horrifies her.
i tweeted it was momentary revulsion and then a thought that i put a lot of work for that walk

Next, members discussed worries about falling. Members specifically discussed concerns of falling at weddings and big events.

zach asked if members got nervous about falling at weddings and similar events. i tweeted i got nervous walking down the aisle and my gait gets worse. blemi tweeted she is skipping the aisle and she gets slower and more self conscious when she is nervous

Finally, members marked July being Disability Pride Month, by explaining what disability pride means to them.

i ask what disability pride means to members to celebrate disability pride month. i tweeted disability pride means identifying as disabled and furthering the notion disability is a beautiful part of diversity.
chris tweeted disability pride means not being ashamed of who she is. being around people who recognize the challenges of her disabilities, but also see the good in them. being comfortable in her disabled skin. blemi tweeted she loves chris' definition

This brings us to our Extend-The-Conversation Question: What is something that routinely surprises you about your disability? Please share your answers in the comments and join us each Wednesday on Twitter at #CPChatNow!

-Devin