Tag Archives: cerebral palsy community

#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

#CPChatNow Recap- 5/12/2021

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This past week in #CPChatNow was hopping as always. Members discussed routine tasks that are difficult for them with their CP, problematic teachers, and things they are looking forward to doing when the world returns to normal. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach opened up the conversation by asking his Extend-The-Conversation Question from last week.

zach opens the conversation by asking which routine tasks feels like an olympic sport due to cp and how members adapt.

Zach shared his strategy for adapting to the routine task of carrying hot liquids:

zach mentions he adapts to the routine task of walking with a hot beverage by using his adult sippy cup, zach tweets he is unsure why he doesn't use his sippy cup around the house

I tweeted about the bane of many people with CP’s existence, buttoning a dress shirt.

i tweeted buttoning a dress shirt is difficult for me and asked for tips, veronica tweeted she buttons and zips one handed and has never had an issue, but it may be that women's button's are on the opposite side. zach tweeted they make shirts with magnetic buttons, i tweeted it reminded me of JJ's pants on speechless

Next, Tonia shared a blog post about an ableist teacher praising her parents and not her for her good report card.

tonia shares a blog post about an ableist teacher that used a report card to praise her parents, i praised her for being vulnerable, zach tweeted knowing when to ask for help is difficult as an adult, let alone being a child. he asks if the help was needed or perceived help. tonia tweeted the help was to be determined by her teacher so it was perceived help.

Finally, members discussed what they were most looking forward to when the pandemic ends:

i ask what members are most looking forward to when things go back to normal. i tweeted i am looking forward to going to sporting events. zach tweeted he is looking forward to doing in-person speaking and author events. veronica tweets she looking forward to seeing more friends and family.

This brings us to our Extend-The-Conversation Question. What do you think makes a good teacher good?

the extend-the-conversation question graphic. #CPChatNow logo in the upper right hand corner, What do you think makes a good teacher good? in middle above a photo of a woman standing in front of a chalkboard with chalk drawings of flexing arms at her shoulders. #CPCHATNOW in white text above a green background at bottom of graphic

Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter. Thanks for reading!

-Devin

#CPChatNow Recap- “Family Reunion” Focus Chat

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Participants in the weekly cerebral palsy Twitter chat #CPChatNow enjoyed a familial and festive atmosphere Wednesday, March 24th, 2021. The night representing our community’s first “family reunion.” To tell you more I am chat co-host Zachary Fenell. All aboard this special recap.

As my co-host Devin Axtman and I hoped, the “family reunion” themed focus chat brought back familiar faces.

Devin happily greets Hannah during the #CPChatNow family reunion.

Beloved community member Hannah joined in on the reunion fun. Such a welcomed presence! After everyone exchanged their hellos, we started into the night’s designated questions.

The list of questions for #CPChatNow's family reunion focus chat.

Answers to the different questions brought up some commonalities. For example, with question two “How has your life changed since you participated in #CPChatNow?”

Long-time chat regular Jen answered the question, saying she has virtually gotten to know more people with CP. I responded, noting virtual connections can lead to real impact. A sentiment Hannah expressed with me in 2019 while recording a Youtube video “The Positives of Social Media.”

Devin further illustrated this fact when answering question three “How has your experience of disability changed (or not) since you started participating?”

#CPChatNow participants discuss how participating in the weekly Twitter chat has changed their experience of disability.

In his answer Devin noted that our community has helped him become more confident in his disability. Other benefits our community has provided members arose when people answered question five, “How have the relationships you developed in #CPChatNow been of a benefit to you?”

#CPChatNow members share how their connections in the group has benefited them.

Both Jen and our “Positivity Princess” Linds responded to the inquiry. Linds saying the chat helps to boost her energy levels. Meanwhile Jen indicated our chat gives her a place to connect with others who can relate with her struggles.

What about you? Answer for the week’s extend-the-conversation question “How have the relationships you developed in #CPChatNow been of a benefit to you?” Leave your response in the “Comments” section.

After you reply, set a reminder to join us on Twitter each and every Wednesday, The good times begin at 8pm ET.

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

-Zachary

The week's extend-the-conversation question asks "How have the relationships you developed in #CPChatNow been of a benefit to you?"
Answer below!

#CPChatNow Recap- 3/17/2021

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This past week in #CPChatNow was happening as always. Members discussed positives that were occurring in their life and how their disability has helped them stand out. We are also proud to announce our Family Reunion Focus Chat! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we are excited to announce our Family Reunion Focus Chat. Please join us Wednesday (3/24) on Twitter to reconnect (or connect!) with #CPChatNow community members, both longtime and new!

zach tweets announcing the #cpchatnow family reunion for march 24th. there is a graphic announcing the reunion and inviting people too join

Next, I would like to recognize Dick Hoyt’s death. Dick and his son Rick who has CP have inspired many by their participation in marathons and triathlons.

i recognize the death of dick hoyt and share a link to his obituary, there is a picture of him pushing his son rick.
zach tweets dick hoyt's death made him think of ultimate warrior's promo before his death. dick hoyt helped others believe and made their blood pulse through their body.

Zach also asked members about a positive in their week. Tonia shared a blog post she wrote in the past week about 10 things no one tells you about aging with CP. I can definitely agree with number 3!

zach asked what about a positive thing from member's past week's. tonia shares a new blog post about 10 things no one tells you about aging with cp.

Finally, Zach asked members how their disability has helped them standout.

zach asks how member's disabilities have helped them standout and excel. i tweeted it has given me an opportunity to share my story with others and build relationships. zach tweets he can say the same thing and his cp gave him a purpose, more than clocking in and out of a job.
Chris also shared her favorite quote about disability regarding being open to differences and fighting for social justice as the ways she tries to standout.
chris tweets about her favorite quote from an activist and social worker with CP, there is an image of the quote, zach tweets he feels he is a better friend to others because he is more open minded and willing to listen, chris tweets she likes the quote because she feels the memoir is the first time she is reading about herself or her experiences

This brings us to our Extend-The-Conversation Question: How has your disability helped you excel? Please share your answers in the comments and join us next Wednesday, March 24th for our Family Reunion Focus Chat on Twitter at 8 PM Eastern.

-Devin

#CPChatNow Recap- 01-13-2021

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As the years pass, the bonds formed during the weekly cerebral palsy Twitter chat #CPChatNow continue to flourish. A fact evident by the chat Wednesday, January 13th, 2021. Evidence I, #CPChatNow co-founder and co-host Zachary Fenell, will present today via your weekly recap. Shall we start chugging along?

#CPChatNow participants reflect on conversations about dating held early in the chat's history.

Conversation between my co-host Devin Axtman and long-time chat regular Blemi caused me to reflect. Leaving me remembering discussions from our chat’s early years when we discussed the dating troubles a disability can cause. Dialogue Devin and Blemi actively engaged in. Now seven years later both remain engaged to their respective significant others! Proof everything comes down to meeting the right person. As Devin stated, “It sounds like a BS cliché but it’s true.”

Another participant who experienced much change and growth since our community started in December 2013, stopped by to update us on his life happenings.

Jorge Oteiza updates #CPChatNow on his life happenings.

Yes! Jorge Oteiza tweeted to update us on his graduate school adventures. An ambitious high school student when our community came into existence, Jorge has come a long way with his studies. Nevertheless, he still remains a young man who possesses a bright future.

Speaking of the future, any discussion in 2021 about the future should involve COVID vaccinations. A subject which arose during our chat January 13th.

#CPChatNow participants discuss availability of COVID vaccines.

Devin raised the topic, mentioning he received his first vaccination shot over the weekend. Others meanwhile lacked a timetable regarding when they would receive their vaccinations.

Elsewhere in the chat, I also asked a pandemic related question.

#CPChatNow participants discuss sports continuing while COVID spreads.

Upon Devin and Blemi starting to discuss hockey season, I asked if they were happy sports are going on or if they feel sports create unnecessary risk of COVID spread. Blemi answered with mixed emotions, noting she does enjoy having the distraction. What about you? Answer for the week’s extend-the-conversation question, “Are you happy sports are going on or do you feel that creates unnecessary risk of spread?”

Answer below in the “Comments.” Then mark your calendars to join us on Twitter 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, "Are you happy sports are going on or do you feel that creates unnecessary risk of spread?"
Answer below!

#CPChatNow Recap- 9-30-2020

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The last #CPChatNow of September was busy as always! Members discussed things such as their art, podcasts, and keeping themselves on track with what they needed to do. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, #CPChatNow mama bear, Erin, talked about her art. Erin would like to use her art to inspire people.

erin tweets she is doing paintings to build an etsy store. erin tweets she is mainly doing landscapes and has backgrounds for be yourself; everyone else is taken and happy fall.
erin shares last week's painting, a painting with a sky at sunset. there is a brown path with dark green landscapes on both sides

Next, talk turned to Chris’s upcoming talk at a CP conference about his podcast, a podcast about his favorite musician, Prince.

chris tweets he is talking about how he is recording and editing his podcast while sharing stories of his favorite guests and episodes, zach asks who his audience is and states that can be helpful in deciding what to share. chris tweets his audience is people with cp, friends and families and healthcare professionals
chris explains his podcast is on his favorite musician, prince. he is going to explain how prince inspired him to put his voice out there and talk about what he loves. i shared i felt prince would love that and that's what he is all about.

Finally, talk turned to something that is a struggle for many, especially during quarantine, staying on track.

erin tweets staying on task is her biggest struggle, zach tweets he has a similar issue due to him jumping from task to task, he needs to remind himself to focus on one thing, erin tweets she makes daily goals and tries to remove distractions, zach tweets he is working at the library to remove distractions

This brings us to our Extend-The-Conversation Question inspired by Chris’s podcast: What is your favorite Prince song? Share your answers in the comments!

Thanks for reading! Join us each Wednesday at 8 Eastern on Twitter at #CPChatNow!

-Devin

#CPChatNow Recap- 9/9/2020

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This past week in #CPChatNow was bustling as always. Members discussed personal accomplishments, COVID restrictions in Australia, good deeds, and what social media platform they like. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we would love to congratulate #CPChatNow mama bear, Erin, on her acceptance to a Master’s program:

erin tweets that she was accepted to the sacred theology master's program she applied to. zach wishes her congratulations and asks her to make time for #cpchatnow

#CPChatNow has had a member joining us from Australia. AcquiDis detailed COVID restrictions in place in the land down under.

acquidis detailed covid restrictions from australia. she tweeted in melbourne there is an 8-5 nightly curfew
acquidis tweets masks are mandatory outside the home with many dying in aged care facilities, she tweeted there are $1652 fines per offense of not wearing a mask or breaking curfew

Next, talk turned to good deeds as I shared the story of my bus driver taking me to the train station at the end of her route. Members shared good deeds others had done for them or they had done:

zach asked members what a good deed someone had done for them or they had done for someone else. zach shared he worked all six days his work was open to cover a staff shortage, erin tweets she send a friend a custom wedding card

Finally, Zach and Chris tweeted about what social media platform they were most active on:

chris and zach tweet about what social media platforms they are active on. zach tweets he is not active on linkedin, but has not been active. he mainly uses twitter and facebook. zach tweets he likes facebook for people he already knows and twitter is better for meeting new people, chris tweets he uses facebook every day and uses twitter to interact with celebrities.

This brings us to our Extend-The-Conversation Question: What is your favorite good deed you have ever done or someone else has done for you? Please share your answers in the comments!

Please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow! Thanks for reading!

-Devin

#CPChatNow Recap- 09-02-2020

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A strong communal vibe resonated within the live weekly cerebral palsy Twitter chat #CPChatNow Wednesday, September 2nd, 2020. Here to delve into details, I am chat co-host Zachary Fenell. Consider me your conductor for the train ride that is the September 2nd, 2020 recap. All aboard!

Discussion early in the night included long-time participants sharing interesting developments going on in their own lives.

Timmy tells #CPChatNow about his current scientific research.

Our “resident scientist” Timmy made an appearance. Prompted by my co-host Devin Axtman, Timmy updated us on his current research. Currently Timmy remains at work investigating binge drinking and the executive and emotional input to the reward circuit. Overall, he explained, the study hopes to understand the neural circuitry involved with addiction and addiction-like behavior.

Besides Timmy, the recently returning Erin provided us an update. Erin joined us after handing in a big term paper the night prior. In our chat’s early years, Erin played a pivotal role in our community. To the point she received the moniker “Mama Bear!”

Beyond enjoying familiar faces like Erin and Timmy, we also welcomed a newcomer.

#CPChatNow participants welcome a newcomer.

AcquiDis joined our chat for the first time September 2nd, 2020. Personally, I found a quote included in a press release AcquiDis shared intriguing. “…urges disabled individuals to embrace their condition and look beyond it.” The quote led to further dialogue.

#CPChatNow participants discuss the difference between looking beyond your disability and disliking your disability.

Devin pondered whether a fine line exists between looking beyond your disability and disliking your disability. Furthermore, Devin stated he doesn’t believe there stands a final stage where you “overcome” your disability. Instead Devin said there will always be things thrown back your way.

Both Erin and I added our separate input to the topic. Erin emphasizing the need to embrace and own your disability. Meanwhile I distinguished looking beyond and disliking your disability, stating looking beyond your disability entails accepting your disability and just doing what you need to do to be you. Alternatively, disliking your disability entails an active conflict where you battle negative thoughts. An idea Devin paraphrased well, summarizing the negative thoughts as “battling internalized ableism.”

Enough though regarding what we think! What do you think? Answer as the week’s extend-the-conversation question, “What is your attitude towards your disability?” Comment below to answer!

Answer as the week's extend-the-conversation question, "What is your attitude towards your disability?"

Then make your plans to join us on Twitter each and every Wednesday. The fun begins at 8pm ET!

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

-Zachary

#CPChatNow Recap- 7/15/20

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This past week in #CPChatNow was cracking as always. Members discussed various topics like their brags for the day, creating their own podcast, life hacks, and what part of the day they feel at their best.

Zach opened the conversation by asking members what their brag for the day was. He shared that his book is now offered at the library he works at:

zach tweets he spotted his book while working at the library. an image of zach's book on a book shelf between two books.

My brag was advocating to my apartment to finally finish a wheelchair ramp on a sidewalk:

i tweet my brag is advocating to my apartment to finally finish a wheelchair ramp. an image of a wheelchair ramp by a pickup

Travis tweeted about starting his podcast, Off The Crutch.

travis tweeted about starting his podcast, off the crutch. he came up with the name because he uses forearm crutches.

Amanda tweeted a Buzzfeed article with tips for people with limited mobility. This might be helpful for some people with CP.

amanda shared a video from buzzfeed about 35 tips from people with limited mobility

Finally, members discussed what part of the day they felt the best at:

zach asked what part of the day people feel their best at. zach tweets he would've said 7-10 pm in college, but now he said in the morning. i tweeted right after i take a shower, veronica tweeted in the early afternoon.
karen tweeted she feels better at night because she is still sleepy in the morning so she has less balance.

This brings us to our Extend-The-Conversation: What is your favorite part of the day?

the extend the conversation question graphic. a picture of a sunset with a person standing in front of the ocean. extend-the-conversation question in white with what is your favorite part of the day? and the white #cpchatnow logo in the bottom right hand corner

Thank you for reading and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow

-Devin