#CPChatNow Recap- 12-08-2021

On Wednesday, December 8th, 2021 the weekly cerebral palsy Twitter chat #CPChatNow enjoyed a lively conversation. To tell you more, I am chat co-host Zachary Fenell. Shall we get to recapping?

Several topics came and went throughout the evening Wednesday, December 8th. Thus why I described the night as “lively.” Early in the evening Alessandro brought life to the chat, asking a question.

Alessandro asks #CPChatNow if they have moments where they are so deep into whatever they're doing, that they forget they have CP.

Alessandro explained recently he has experienced moments where he has been so deep into whatever he was doing, that for a split second he forgets he has CP. Curious, he wanted to know if others encountered similar experiences. Both my co-host Devin Axtman and I said no, even noting dealing with cerebral palsy in our dreams. Meanwhile, Jen said sometimes. However, she could not pinpoint an exact moment. Jen and Alessandro were not alone either.

Blemi shares her experiences about forgetting she has cerebral palsy and what jolts her to remember.

Blemi stated she tends to forget she has CP until she trips over something. Or, until she leaves the house and people stare at her. Stares which sometimes lead to ridiculous comments. Another subject our community discussed December 8th. A discussion prompted by Blemi.

Blemi asks #CPChatNow "What is the most ridiculous question someone has ever asked you?"

In asking participants what the most ridiculous question they have ever been asked, Blemi triggered our participants to recall some truly dumbfounding inquiries. Devin remembered getting asked “How do you go to college?” His tale reminded Blemi of a similar situation. Blemi recounted for us people always asked if she had different admission requirements.

Nevertheless, the most ridiculous question received arguably goes to Hannah. She told us about being told she must have some other palsy because she has not “OUTGROWN IT YET?” Although, for argument sake, you could debate the question’s ridiculousness level.

Veronica offers an explanation for why some people think you outgrow cerebral palsy.

Like Veronica pointed out, many people don’t realize you don’t outgrow CP because CP gets advertised as the biggest birth defect in children. Veronica mentioning “using the word children makes it sound like it can be outgrown.”

A sentiment I agreed with 100%. To keep the conversation going, answer for the week’s extend-the-conversation question “What are other ways we can debunk the myth you ‘outgrow cerebral palsy’?” Leave your ideas in the “Comments” section.

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

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

-Zachary

Answer the extend-the-conversation question, "What are other ways we can debunk the myth you 'outgrow cerebral palsy'?"
Answer below!

#CPChatNow Recap- 11-24-2021

The weekly cerebral palsy Twitter chat #CPChatNow lives! Or, for accuracy I, co-host Zachary Fenell, should say thrives! Yes. Despite the lull in recaps throughout November, our community has been going strong. Do not simply take my word though. Let me show you by recapping our chat from Wednesday, November 24th, 2021.

Enthusiastic newcomer Stephen has helped our community garner a thriving atmosphere.

On the eve of Thanksgiving #CPChatNow participants discussed what they are thankful for. A question raised by chat newcomer Stephen Commander.

Stephen learned about our chat from long-time #CPChatNow regular and “Life with Blemi” Youtube personality Blemi. In the few weeks since joining our family Stephen has grown thankful for our community, saying “I look forward to this every week.” Sentiments Stephen shared after asking participants what they are thankful for.

Other answers included Blemi saying she is thankful for everything she currently has. Plus, my co-host Devin Axtman said he is thankful for finally being married after COVID postponed his wedding in 2020. Marriage and relationships in general would continue as a discussion topic.

#CPChatNow participants offer dating advice.

Both Devin and Blemi offered Stephen dating wisdom. Devin noting that although meeting someone is tough, it is possible. Touting as evidence the fact multiple people in our community are married or are in relationships. Bottom line, Devin advised “Try and have fun!”

Meanwhile Blemi provided similar advice. Seconding how dating is tough and can seem even harder with cerebral palsy. Nonetheless, you could still find someone. She recommended keeping an “open mind and putting yourself out there.”

Participants’ open minds remained apparent throughout the night November 24th. In addition to dating and what we are thankful for, various topics arose.

Blemi asks #CPChatNow if anyone in the group has sleep apnea.
The sleep apnea discussion continues.

Amongst the assorted topics, Blemi asked if anyone has sleep apnea. A question spurred by a doctor telling her sleep apnea is very common in the CP community. News to many in the chat! Long-time chat regular Jen and I each responded negatively, at least stipulating we do not think so. What about you? Keep the conversation going and answer for the extend-the-conversation question “Do you have sleep apnea?” Reply in the “Comments” section.

Maybe your reaction to the sleep apnea-cerebral palsy news echoes Sean who stated “Is it?! That would explain a few things…” However you reacted, do not let the news cause you to fall over in surprise. Anyway, speaking of falling,

#CPChatNow participants discuss how they react to seeing others fall.

After watching my co-worker fall and hurt herself earlier in the week, I asked the chat if anyone else finds seeing others fall to be unsettling. This diverged into further dialogue about reactions when we ourselves fall. Sean mentioning his mother’s reaction to when she hears a thud. She yells “Scream or bang on something if you need me.” Otherwise, she resumes whatever she was doing.

A similar reaction to how the people in Blemi’s life respond. Blemi sharing those close to her will just carry on when she falls. Unless Blemi starts laughing. The laughter an indicator she hurt herself.

Now, we all know better then to tell someone “Don’t fall.” Nevertheless, let me suggest avoiding falling in with a forgetful crowd. Instead, remember to answer the week’s extend-the-conversation question. “Do you have sleep apnea?”

Answer below! Afterwards set a reminder to join us each and every Wednesday on Twitter. The fun starts at 8pm ET. In the meantime I will return within the week to recap our chat from Wednesday, December 1st, 2021.

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

-Zachary

Answer the extend-the-conversation question- "Do you have sleep apnea?"
Respond below!

#CPChatNow Recap- 10-20-2021

While temperatures outside begin to drop, conversation during the cerebral palsy Twitter chat #CPChatNow heated up. Or so that remained the case Wednesday, October 20th, 2021. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

The weather topic arose early in the night.

#CPChatNow participants discuss the challenges cooler temperatures cause individuals with spastic cerebral palsy.

Admittedly, I initiated the dialogue commenting how “it’s that time of year #CPChatNow when my spasticity is starting to increase due to colder temperatures.” Long-time chat regular Blemi responded, calling the week “a stark reminder of that” for her. Adding “It’s not even that cold yet!” Regarding Blemi’s “It’s not even that cold yet” statement, I speculated the actual temperature does not matter as much as how dramatic the decrease in temperature is.

Oppose to spending the night dwelling on the challenges we face due to the cooler weather, we re-focused to concentrate on solutions.

#CPChatNow participants answer "What is one product that helps you get through the winter months?"

A focus starting with me asking participants to name a product which helps them get through the winter months. Blemi showed love for her heated blanket and heated massage pad. I too almost said heating pad. However, after looking over my “Cerebral Palsy Winter Tips” blog post, another answer came to me. My shoes with rigid soles.

Alessandro, on the other hand, offered some humor. Crediting being Italian as what helps him through the winter months. The humorous answers did not stop with Alessandro.

Veronica injects more humor into the #CPChatNow dialogue with her solution to handling the winter months.

Veronica chimed in to say moving to Arizona helped her cope with the winter months. A solution I called “Perfect.” Nevertheless, not everyone has the option to move to Arizona. So, let us keep the solutions coming! Answer for the week’s extend-the-conversation question, “What is one product that helps you get through the winter months?” Leave your answer in the “Comments” section below.

Afterwards, mark your calendar to join us each and every Wednesday on Twitter for #CPChatNow. The fun starts at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks "What is one product that helps you get through the winter months?"
Answer below!

#CPChatNow Recap- 09-29-2021

Navigating ups and downs, plus more highlighted the conversation during the live cerebral palsy Twitter chat #CPChatNow Wednesday, September 29th, 2021. Here to delve further into the details, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

Early in the evening I touted a recent personal triumph.

Zachary recalls a 5k he recently completed.

While finishing far from a personal best time, I felt victorious in completing the 2021 Run Through History 5k. As I shared, due to my groin strain the prior month I went into the race not my best physically. Nevertheless, I persevered through the hilly course. Thinking about the hills, led me to ask a question.

Blemi answers whether she finds moving uphill or downhill more challenging.

Curious, I asked what others find more challenging, moving uphill or downhill? Long-time chat regular Blemi answered with no hesitation, saying downhill. I said the same, noting going downhill momentum builds making controlling yourself harder. Blemi and I soon found ourselves in good company.

Alessandro answers the question, "What do you find harder, moving uphill or downhill?"
Conversation about moving uphill and downhill also leads to discussion about ascending and descending stairs.

Alessandro concurred with my assessment about controlling momentum going downhill, just using more colorful wording. Additionally, Veronica replied with certainty. Calling downhill definitely harder. In response, I pondered if others would agree descending stairs remains more challenging then ascending them. My co-host Devin Axtman confidently replied “Without a doubt.”

As the night progressed, the chatter gradually moved from moving up and down hills and stairs to another subject.

Participants in #CPChatNow discuss the concept of Crip time.

Earlier in the day while reading Disability Visibility I came across the concept Crip time. Curiosity striking again, I asked how many people were familiar with the term. Devin hit on a key element involved, needing to plan on extra time. To offer a more comprehensive definition of Crip time I cited University of Minnesota‘s Crip time definition.

A concept arising from disabled experience that addresses the ways that disabled/chronically ill and neurodivergent people experience time (and space) differently than able-bodyminded folk.

-University of Minnesota

Veronica found herself realizing she uses Crip time without even knowing it! Mentioning in-particular always doubling prep time for recipes. What about you though? Answer for the week’s extend-the-conversation question, “How do you use Crip time?”

This week's extend-the-conversation question asks, "How do you use Crip time?"

Answer in the “Comments” below! Afterwards set a reminder to join us each and every Wednesday on Twitter. The fun starts at 8pm ET.

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

-Zachary

#CPChatNow Recap- 09-15-2021

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- 09-01-2021

Every Wednesday participants in the live cerebral palsy Twitter chat #CPChatNow gather to enjoy comradery and conversation. Wednesday, September 1st, 2021 proved no different. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

In addition to a night filled with engaging discussion, September 1st marked the start of an annual challenge.

#CPChatNow participants discuss the possibility of creating a team for Steptember 2022.

That challenge, Steptember, arose in the discussion September 1st thanks to chat regular Veronica. Steptember challenges individuals to move 10,000 steps a day throughout September. All a way to help fundraise for life-changing scientific advances for the CP community. To learn more, visit steptember.us.

Veronica wondered if anyone planned to participate in Steptember 2021. I quote tweeted her and noted another participant Timmy approached me about starting a #CPChatNow Steptember team. I declined the idea this year because I am still healing from my groin strain. However, next year I say game on!

Needing to put off a #CPChatNow Steptember team until 2022 due to injury could cause “Life isn’t fair” thoughts to form. Another popular topic from our September 1st Twitter chat.

#CPChatNow participants answer the question "How often do you find yourself thinking 'Life isn't fair' and how do you cope with the feeling?"

Inspired by long-time chat regular Blemi‘s Youtube video “Having Sad Days with Cerebral Palsy,” I asked participants “How often do you find yourself thinking ‘Life isn’t fair’ and how do you cope with the feeling?” Blemi and I discovered similarities in our answers. We both had the thought more when younger, but specific frustrations can still trigger sad days. Learning to come to terms with CP has helped a lot to cope with the down days.

What about you? Keep the conversation going and answer as the week’s extend-the-conversation question “How often do you find yourself thinking ‘Life isn’t fair’ and how do you cope with the feeling?” Leave your answer in the “Comments” section.

Afterwards, mark your calendars to join us at #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 "How often do you find yourself thinking 'Life isn't fair' and how do you cope with the feeling?"
Answer below!

Update On Recaps

Wednesday continues to remain a weekly highlight for participants in the live cerebral palsy Twitter chat #CPChatNow. A fact I, #CPChatNow co-host Zachary Fenell, wanted to emphasize because circumstances prevented me from publishing recaps the last two weeks. Circumstances I will detail today.

As our regular readers know, my co-host Devin Axtman and I alternate weeks compiling the weekly recaps. Said schedule left the Wednesday, August 4th recap my responsibility. Unfortunately, on Thursday, August 5th I fell and hurt myself. Aggravating my groin to the point I could not take a step forward. At least, not until two days later. Even then, I needed a walker to make those forward steps.

Nonetheless, I thought I could get the August 4th recap done prior to the August 11th chat. Reality showed me otherwise. I accepted defeat and informed Devin I would instead complete the August 11th recap. However, upon getting ready to compile the night’s highlights, I encountered a problem.

Twitter appears to be experiencing technical difficulties.
Screen shot showing Twitter technical difficulties

To gather recap highlights I scroll back to the beginning of that date’s conversation and then scroll up. Seeking out highlights which feature main subjects discussed, highlight our communal atmosphere, and/or stimulate new ways to think about a topic. In scrolling down to get to the beginning of our August 11th Twitter chat the tweets stopped loading. I attempted to troubleshoot the issue multiple ways. Using a different web browser. Signing out from my account and signing back in. Walking away for a few hours and return hoping Twitter fixed the technical difficulties. Nothing worked.

Due to the above, I could not compile a recap for our August 11th Twitter chat. Again though, I wanted to post this update to emphasize Wednesdays still remain a weekly highlight for those in our community. Hopefully the technical difficulties will resolve and recaps can return next week. In the meantime please consider joining us each and every Wednesday on Twitter, starting at 8pm ET.

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

-Zachary

#CPChatNow Recap- 07-21-2021

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- 07-07-2021

Participants in the weekly cerebral palsy Twitter chat #CPChatNow gathered for a lively conversation Wednesday, July 7th, 2021. Here to tell you more, I am chat co-host Zachary Fenell. Welcome to your recap.

Various topics came and went throughout the evening July 7th. Early in the night dialogue revolved around the upcoming Paralympics.

#CPChatNow participants discuss Paralympic coverage.

Admittedly, I raised the Paralympic topic when tweeting a BBC News story, “Tokyo Paralympics: Most of Channel 4’s TV hosts will be disabled.” In my tweet, I asked what others thought about Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled. My co-host Devin Axtman responded, calling the move “much needed.” I agreed, saying involving disabled voices should help prevent an ablest narrative.

Your turn! What do you think? Answer for the week’s extend-the-conversation question, “What do you think of Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled?” Leave your answer in the “Comments” section.

Continuing on, chat regular Chris and I found ourselves discussing athletes who had to persevere through much adversity. A subject which led me to pose another question.

#CPChatNow participants discuss quotes they tell themselves in order to persevere through adversity.

I asked participants “When facing tough times, what quote or advice do you tell yourself in order to keep persevering?” Long-time regular Blemi responded “Never give up on your dreams,” a quote from Rick Hansen Man in Motion. Meanwhile Alessandro replied “Do or do not. There is no try.”

Putting Alessandro’s chosen advice into action, do remember to answer the week’s extend-the-conversation question. Again, the question asks “What do you think of Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled?

This week's extend-the-conversation question asks "What do you think of Channel 4's pledge to have more than 70% of its Paralympic presenters be disabled?"
Reply in the “Comments.”

Afterwards, set yourself a reminder to join #CPChatNow each and every Wednesday, starting at 8pm ET. Or, tweet me and ask me to include you in my weekly #CPChatNow reminder tweet. Until our next correspondence, remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 06-23-2021

Conversation thrived Wednesday, June 23rd, 2021 during the cerebral palsy Twitter chat #CPChatNow. Here with the details, I am chat co-host Zachary Fenell. Come and join me for your weekly recap.

Interestingly, much dialogue sparked from a single question.

Participants in #CPChatNow answer what topic related to living with cerebral palsy they wish they could find more information on.

That question asked “What topic related to living with cerebral palsy do you wish you could find more information on?” Answers ended up containing a common theme. Long-time regular Blemi responded saying she wants to know how aging actually works for us. Similarly, Grace expressed an interest in how CP affects other health issues. My co-host Devin Axtman seconded Blemi and Grace, in-particular mentioning treatments as we age. A point I thought to emphasize.

#CPChatNow participants discuss how attitudes towards CP treatments change with aging.

Piggybacking off Devin’s comments regarding treatments as we age, I noted often the discussion about treatments revolves around children. This causes the idea of continued treatment into adulthood getting lost. Or, at least the attitude towards treatment for adults with cerebral palsy differs. A distinction Grace offered input on.

Grace and Zachary discuss balancing treatment options and realistic expectations.

Grace stated her belief learning what your body can do and maintaining that remains realistic. I agreed, but added what you can and cannot do are not permanent fixtures. To support my response I explained setting smaller goals that build on top of each other can lead a “cannot” to become a “can.”

Enough about my thoughts though! Time for you to contribute your insights. Answer as the week’s extend-the-conversation question, “What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”

Answer below! Afterwards, mark your calendar to join us live each and every Wednesday. The fun starts at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks "What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”
Answer below! “What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”