#CPChatNow Recap- 04-27-2022

Accomplishment remained a key theme during the cerebral palsy Twitter chat #CPChatNow Wednesday, April 27th, 2022. To tell you more, I am chat co-host Zachary Fenell. Come and join me for your weekly recap.

The accomplishment theme began with members in our community helping me celebrate an achievement.

Participants in #CPChatNow congratulate Zachary on the release of his new book Slow and Cerebral.

My achievement I teased in the chat’s opening minutes, saying “I’ve had an exciting week.” Although, Blemi and Veronica had already seen the news. They both sent congratulatory messages my way. For those who had not seen my news, I quickly shared the reason for my excitement.

Zachary announces his new book, Slow and Cerebral, is now available.

Prior to April 27th I announced through my social media outlets that I had released my new memoir, Slow and Cerebral. The book details how I did not let my CP stop me from becoming a marathoner. Thanks to Amazon, Slow and Cerebral is available in multiple countries, including the United States, Canada, and United Kingdom.

Thank you for tolerating my cheap plug. Now let me resume recapping the April 27th chat. Stephen kept the conversation focused on accomplishments by asking a question.

#CPChatNow participants answer Stephen's question, "Do you think that when you have something that able people have that is a big accomplishment?"

Specifically, Stephen asked, “Do you think that when you have something that able people have that is a big accomplishment?” I answered, offering my opinion on accomplishments. In my opinion, “Big accomplishments should be measured in context with the person achieving them, not in comparison to who else has accomplished the same thing.”

Additionally, my co-host Devin Axtman responded to Stephen’s question. Devin said, “Depends on what it is.” Chris would share similar sentiments.

Chris gives her insights on accomplishments and how they can be perceived as inspiring.

As Chris noted, “There are things that are universally big accomplishments.” She continued, correlating how feats achieved by people with disabilities get praised as “inspiring.” Nonetheless, Chris specified “But getting up and going to work or having a relationship… Those things are not inspiring, because they are expected.”

Said discussion progressed to highlight how setting goals to coincide with societal expectations could end up damaging. Let us stay positive though, and keep the conversation going by answering for the week’s extend-the-conversation question, “What do you consider your biggest accomplishment?”

This week's extend-the-conversation question asks, "What do you consider your biggest accomplishment?"
Answer in the “Comments.”

After answering, make sure to mark your calendar for #CPChatNow each and every Wednesday. The fun begins at 8pm ET.

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

-Zachary

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#CPChatNow Recap- 04-20-2022

Each and every Wednesday those in the cerebral palsy (CP) community learn from each other thanks to the live Twitter chat #CPChatNow. Today I, chat co-host Zachary Fenell, will highlight the lessons learned during the chat Wednesday, April 20th, 2022. Welcome to your weekly recap!

Before I start recapping, I acknowledge I am late posting this. The reason for the tardiness I explained to my co-host Devin Axtman during our Twitter chat Wednesday, April 27th, 2022.

Zachary explains to his co-host Devin why the April 20th recap is running late.

Earlier in the week I finally released my new book Slow and Cerebral. The memoir details how I did not let my cerebral palsy stop me from becoming a marathoner. Spreading word about Slow and Cerebral‘s release led to the day getting away from me.

Enough dwelling on why I am late with the recap, though. Instead, let me actually get to recapping. Through general discussion Wednesday, April 20th the subject of medications arose.

#CPChatNow participants discuss their experiences with baclofen.

After I mentioned I take baclofen to relieve my spasticity, Casey asked me if I still find the medication helpful. Noting her body grew use to the medicine, causing her to need to take something else.

Casey would go on to name tizanidine as what she takes now. Another participant, Chris, recognized tizanidine as zanaflex. Chris recalled “I was on max oral baclofen, zanaflex AND Clonazepam. It barely put a dent in the spasticity and pain.” However, Chris eventually found relief with the baclofen pump. She described the pump as “magical.”

Altogether the medication conversation allowed us to learn about the different options which exist for managing spasticity. The learning continued when I asked a question about assistive equipment.

Zachary's question about assistive technology leads to Chris giving him a recommendation for orthotics.

Curious, I asked participants “Is there any piece of assistive equipment which you feel would improve your life?” My curiosity stemming from contemplation over purchasing an adult trike. The trike conversation parlayed into Chris mentioning her podiatrist. In response I said, “Speaking of podiatry, I need to get new inserts for my shoes.”

Refreshing my memory on a past recommendation, Chris commented, “I think I suggested Hanger Orthotics?” Indeed Chris had made that recommendation to the group in the past. Calling Hanger Clinic (who provide services nationally), “Great to work with.” Adding, “It was so awesome to be able to get shoes there, know they would work, and be accessible with insurance.”

What recommendations do you have for others with cerebral palsy? Keep the conversation going and answer for the extend-the-conversation question, “What company or product would you recommend to your peers with CP?”

Answer for the extend-the-conversation question, "What company or product would you recommend to your peers with CP?"
Answer in the “Comments.”

As you sort through any recommendations in the “Comments” section, please remember cerebral palsy’s varying impact on us. What works for somebody else might not work for you. If a suggestion intrigues you, check with a medical professional and discuss the option with them.

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

-Zachary

#CPChatNow Recap- 03-30-2022

Participants in the weekly cerebral palsy Twitter chat #CPChatNow discussed various topics Wednesday, March 30th, 2022. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

An enthusiastic member of our community, Stephen, helped to get the conversation started.

Stephen asks #CPChatNow participants about their thoughts on the phrase "differently abled."
Chris gives her opinion on the "differently abled" phrase.

Stephen asked how people feel about the phrase “differently able.” I replied, saying I find attitudes more important than any one phrase. In particular noting, “You can use the ‘right’ words but have a patronizing attitude.” Personally, I do not have time for people who want to patronize me.

Meanwhile my co-host, Devin Axtman, called language “a personal thing.” A fact Chris also demonstrated in her answer to Stephen’s question. Chris explained she used differently able a long time ago, but now she prefers disabled. A preference she gained through experience over the years.

Though, along with age, comes other impact. A topic which arose as the chat continued March 30th.

Participants in #CPChatNow discuss cerebral palsy and premature aging.

This subject came to the surface after Stephen asked participants if they found CP harder to cope with when you were younger or older. Both Chris and Veronica mentioned cerebral palsy becoming more difficult to cope with as they grew older. Veronica specifically saying, “No one informed me all CP levels can affect aging though and I’d have to deal with premature aging.”

As the evening progressed, discussion drifted to other subjects. For example, challenging surfaces to walk on.

Devin asks participants what they think the hardest surface to walk on is.

Devin sparked the hardest surface to walk on subject by asking everyone what they think the hardest surface to walk on is. He himself said the ocean floor. Blemi answered saying cobblestone sidewalks. I replied saying sand. What do you think? Keep the conversation going and answer for the week’s extend-the-conversation question, “What do you think is the hardest surface to walk on?”

Answer below in the “Comments.” Then mark your calendar 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

Answer for the week's extend-the-conversation question, "What do you think is the hardest surface to walk on?"
Answer below!

#CPChatNow Recap- 03-02-2022

On Wednesday, March 2nd, 2022 participants in the cerebral palsy Twitter chat #CPChatNow enjoyed an important conversation. Join me, chat co-host Zachary Fenell, as I do my best to recap the discussion. Shall we get started?

Participants in #CPChatNow discuss bone issues and cerebral palsy.

The important conversation I referred to above revolved around cerebral palsy and aging. A topic raised by chat regular Chris when she shared a Science Direct article “Incidence of osteoarthritis, osteoporosis and inflammatory musculoskeletal diseases in adults with cerebral palsy: A population-based cohort study.” Chris explained the article remains relevant to her right now and she wondered if others had any experiences or thoughts on the matter.

Veronica chimed in saying she gets the early aging part of the article. Adding humidity makes her arthritis act up. Although, Veronica expressed uncertainty about whether her CP has anything to do with her arthritis and osteoporosis seeing how those conditions run in her family.

Chris responded, saying arthritis and osteoporosis also run in her family. She went on, curious if any of us were told growing up about bone issues and CP. My co-host Devin Axtman weighed in with his experiences.

Devin recounts what doctors told him or didn't tell him about problems he would have as an adult with CP.

Devin summarized his experiences saying, “I feel like I was basically told of no problems I would have as an adult with CP.” Continuing he described the attitude from medical professionals as “Just like ‘WELP we did all the regular surgeries. Good luck!'”

A sentiment which resonated with Chris. She stated “This was a big reason why I brought this up.” Challenging everyone to “Be aware. Do your research, ask questions, take calcium!” Chris then offered a follow-up the next day.

Chris shares with #CPChatNow an article from cpresource.org about preventive care for adults with cerebral palsy.

In her follow-up tweet Chris shared an article from cpresource.org about “Preventive Care for Adults with Cerebral Palsy.” Let us keep the preventive care discussion going. Answer for the week’s extend-the-conversation question, “What is something you do for preventive care?” Answer below in the “Comments.”

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

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

-Zachary

This week's extend-the-conversation question asks, "What is something you do for preventive care?"
Answer below!

#CPChatNow Recap- 02-16-2022

Communal vibes emanated from the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, February 16th, 2022. Here to tell you more, I am chat co-host Zachary Fenell. Let us get to recapping!

Admittedly, I am a bit hesitant in compiling this recap. My hesitancy rooted in concerns I will come across too self-promotional. As you might know, I had remained hard at work on a new book over the last two years. Well, on Wednesday, February 16th I revealed my upcoming book’s cover and title.

I first posted the reveal in #CPChatNow to show my gratitude for all the support the community has given me throughout the process. Count on me to continue to provide updates as Slow and Cerebral nears release (most likely late March).

Elsewhere in the chat, I also supplied an update on a long-time community member.

Zachary offers an update on long-time #CPChatNow participant Hannah.

Hannah asked me to share some bad news regarding her health. Those in our community rallied around Hannah and sent well wishes her way. Personally, I noticed a parallel between us rallying around Hannah and celebrating Slow and Cerebral‘s reveal.

Zachary compares the February 16th, 2022 #CPChatNow to a roller coaster.

Essentially, I compared the night’s chat to a roller coaster. Commenting that amidst the highs and lows, one constant remained. Community!

Throughout the ride, we enjoyed other lively discussion. Stephen, an enthusiastic chat participant, helped spark this dialogue.

Stephen asks #CPChatNow, "What is one thing you like about cerebral palsy?"

Stephen asked the group what is one thing they like about CP. I answered saying CP has acted as a filter, letting me know what friends I can count on. Overall though, responses varied.

Devin shares what he likes about cerebral palsy.
Jessica discusses what she likes about CP.

My co-host Devin Axtman credited CP for making him more adaptable and less upset by setbacks. Meanwhile Jessica replied, saying CP has helped her to show empathy and compassion to others. What about you? Keep the conversation going and answer as the extend-the-conversation question, “What do you like about cerebral palsy?”

Answer in the “Comments.” Afterwards, set a reminder 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

Answer  for the week's extend-the-conversation question, "What do you like about cerebral palsy?"
Respond below!

#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!