Tag Archives: cerebral palsy community

#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

#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!