#CPChatNow Recap- 09-14-2022

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Wednesday after Wednesday Twitter users gather on the platform to partake in the cerebral palsy (CP) Twitter chat #CPChatNow. To tell you about the conversation from the September 14th, 2022 chat, I am co-host Zachary Fenell. Welcome to your weekly recap.

Various subjects came and went throughout the night September 14th. However, one particular subject seemed quite popular.

#CPChatNow co-host Devin Axtman brings up the subject of cooling temperatures.

Initially, my co-host Devin Axtman raised the heavily discussed topic when he asked participants, “Who is excited for cooler weather?” Devin whimsically added, “I want it to get cool but not cold.” A notion Blemi responded to, saying “Like a perpetual fall and no winter.” Steph also vocalized support for a “perpetual fall.”

Unfortunately, reality dictates fall eventually gives way to winter. The change in seasons led me to ask a question.

Zachary asks #CPChatNow participants about what changes they make to their physical self-care during the different seasons.

Curious, I asked participants, “Do you make changes to your physical self-care depending on the season?” Timmy responded, saying he goes outside more during the warm weather months. In regards to the colder months, multiple people spoke up.

#CPChatNow Participants discusses self-care habits they utilize during colder months.

Both Blemi and Steph mentioned staying warm in the winter months. Steph does this by keeping her apartment nice and warm and by wearing warm clothes. Besides staying warm, Blemi noted she takes more vitamins and eats better in the winter. As she stated, “Anything to get me through another Canadian winter.”

Meanwhile, Devin answered he doesn’t alter his physical self-care depending on the season. Although, he admitted, “I should stretch more in the winter.” Let us keep the self-improvement focus. Answer for the week’s extend-the-conversation question, “What activity could you do to better your life?” Leave your response in the “Comments” section.

After answering, make sure to mark your calendars so you remember to join us each and every Wednesday on Twitter. The fun starts at 8pm ET.

Not sure how Twitter chats work? Checkout my “How to Participate in a Twitter Chat” tutorial.

I hope to talk soon. As always, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks, "What activity could you do to better your life?"
Respond below!

#CPChatNow Recap- 8-31-2022

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This past week in #CPChatNow was bouncing as always. Members discussed acupuncture, going to concerts, and being involved in planning for their IEP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, Blemi talked about how she does acupuncture to help with pain.

blemi tweets that she gets acupuncture to help manage pain and she loves it. zach tweets he has never tried acupuncture

Next, Blemi tweeted about a Hanson concert she went to and the venue was accommodating and allowed her to sit. It is always nice when venues are accommodating!

zach asks if blemi enjoyed hanson, she said it was a blast, but she was happy to be home, zach tweets he remembers being sore after seeing bowling for soup, blemi tweeted the venue was accommodating and allowed her to sit.

Next, talk turned to how involved (or not) members were in developing their IEP, Individualized Education Plan.

zach asks how involved people were in their IEP meetings. i tweeted not until high school, but i wish it would've been earlier, zach said he started in 7th and 8th grade.

hannah tweeted she was off and on in junior high, but all she needed was a place to keep her wheelchair and extra testing time, zach said he had two sets of textbooks- one for at home and one for the classroom, blemi asks what an iep is because they don't have them in canada, grace explains it is an individualized education plan for disabled students in the US

This brings us to our Extend-The-Conversation Question: What are some things you do regularly to manage pain?

Thanks for reading and please join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

-Devin

#CPChatNow Recap- 08-24-2022

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Every Wednesday people gather on Twitter for the cerebral palsy (CP) Twitter chat #CPChatNow. To tell you about the chat from Wednesday, August 24th, 2022 I am chat co-host Zachary Fenell. Welcome to your weekly recap!

Assorted topics came and went during the night. My co-host Devin Axtman raised one such subject.

Participants in #CPChatNow discuss adaptive activities.

Devin asked if anyone has tried any adaptive activities. I noted my marathon experiences required adaptation. For example, arranging an early start/late finish and using my cane. Arrangements I discuss in my latest memoir Slow and Cerebral (available at Amazon).

Sorry for the cheap plug! I could not resist. Returning our focus to the August 24th conversation, Chris expressed interest in trying adaptive activities. She mentioned an organization, Outdoors for All, which could possibly make that happen. Similarly, I named some activities I am interested in trying.

Zachary names some activities he would like to try.

As I recalled a few Wednesdays ago, I am interested in doing some wall climbing. I added August 24th, “another activity that would interest me is an adaptive Ninja Warrior course.” What about you, though? Answer for the week’s extend-the-conversation question, “What adaptive activities are you interested in trying?” Leave your response in the “Comments” section.

Success in any adaptive activity increases with finding the right coach or mentor. Somebody who could teach you the important ins and outs. The lasting impact a good teacher leaves surfaced while the night continued.

#CPChatNow participants recalls the teachers who have had the greatest impact on them.

Admittedly, I brought up the subject by asking the chat, “What teachers of yours had the greatest impact on you? What subject did they teach?” Stephen credited his fourth grade teacher Chris as the teacher who had the greatest impact on him. Meanwhile, Devin named his sixth grade teacher because of the life lessons he learned. On the other hand our Chris gave the greatest impact honor to her school PT, calling her a, “very influential lady.”

Time for you to keep the conversation going. Remember to answer for the week’s extend-the-conversation question, “What adaptive activities are you interested in trying?” Answer below! Afterwards, mark your calendar to join #CPChatNow each and every Wednesday on Twitter. For questions on how to participate in a Twitter chat, see my video, “How to Participate in a Twitter Chat Using a Computer.”

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

-Zachary

This week's extend-the-conversation question asks, "What adaptive activities are you interested in trying?"
Respond below.

#CPChatNow Recap- 8/17

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This past week in #CPChatNow was hopping as always. Members discussed adaptive waterskiing, exciting research opportunities for CP, and seeing their doctor for medical issues. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I want to share a really cool picture from Blemi recently doing some adaptive waterskiing.

blemi shares a picture of her doing adaptive waterskiing. there is a boat with two people behind the boat.

Next, Chris shared information about the Cerebral Palsy Research Network and research they are doing about falls and other topics common to CP.

chris tweets about a research study the cp research network is doing about falls and other things related to adults and recommends people check it out
zach tweets that the research might not benefit us, but it will create greater understanding of cp and adulthood making aging easier for the next generation

Chris also talks about some medical issues she has been having with her esophagus and discusses the importance of getting things checked out as soon as possible.

chris tweets about tests she has done to find issues with her swallowing. zach tweets that is good information to have and chris tweets as soon as anything feels weird it should be checked out.
zach tweets that cp has kept him having a relationship with his doctor since he is on baclofen and needs regular blood tests

This brings us to our Extend-The-Conversation Question: What adaptive activities have you tried?

extend the conversation question graphic. what adaptive activities have you tried? there is a picture of a blue bowling ball on a ramp in front of a bowling lane

Thanks for reading and join us tomorrow at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 8/3/2022

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#CPChatNow brought in August with a lively chat about things such as flying tips, who is their best friend and why, and how “You Know You Have CP When.” This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, Zach asked if members had tips for flying with a disability and I shared some of my favorites.

zach asks about tips for flying with a disability. i tweeted i always check a bag and bring my wheelchair or use one of the airport ones, but most importantly i pay for precheck.

Next, Stephen asked members who their best friend is and why.

stephen shares his best friend megan tidwell means more than word's can say and she's done things for him that he will never forget.
zach tweets his best friend from high school is his friend rob and he interviewed him for his youtube channel. veronica tweets she went to a small school with a class of 8 students once of which was her twin sister, but she is hoping to see friends soon.

veronica tweeted about her twin sister being a built in best friend and her husband is a big support. zach tweets that is the sign of a healthy relationship to call your husband your best friend.

Finally, Zach and Veronica talked about some ways you know you have CP when.

zach asks members to finish the sentence you know you have cp when. veronica tweets you know you have cp when you do everything with one hand. zach tweets you know you have cp when your bad dreams revolve around an escalator.

Let’s Extend-The-Conversation! Tell us some ways you know you have CP when.

extend the conversation graphic with #cpchatnow logo with tell us some ways you know you have CP when and a picture of a stick figure

Thanks for reading and join us on Twitter at 8 Eastern at #CPChatNow!

-Devin

#CPChatNow Recap- 07-27-2022

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Various subjects came and went Wednesday, July 27th, 2022 during the live cerebral palsy Twitter chat #CPChatNow. Here to tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

Early in the night I issued an important disclaimer.

Zachary warns #CPChatNow he is recording his participation in the chat that night in order to create a "How to Participate in a Twitter Chat" video for his YouTube channel.

I warned participants I planned to experiment with recording my participation in the chat that night in order to create a YouTube video with step by step instructions on how to participate in Twitter chats. The experiment proved successful as you will see below from my video “How to Participate in a Twitter Chat Using a Computer.”

Regarding topics discussed July 27th, Chris mentioned assistive technology (AT). In-particular Chris talked about using grabbers for assistance in getting dressed. I recalled trying to use grabbers following my surgery aftermath at 14 years old. My comment inadvertently shifted the dialogue’s focus to surgery experiences.

Members in the #CPChatNow community discuss their experiences with different surgeries.

Chris recalled my co-host Devin Axtman also underwent major surgery when younger. Devin did his best to fit his surgical history into one tweet, saying, “I have had about 15 ish surgeries of different levels. The biggest one was where they sawed my femur and tibia in half and put them back together with a plate.”

Besides Devin, Chris and I discussed our histories with surgeries. Nothing too shocking, at least in comparison to what another chat regular had to say.

Blemi shares a horrifying surgery experience she had.

Replying to Devin noting he had multiple heel cord lengthening operations, Blemi shared, “I’ve had it done twice. The second time I was awake and something happened…” Consequently, Blemi couldn’t walk for almost a year.

Interestingly enough, walking arose elsewhere in the chat too.

The #CPChatNow community discusses what things people, especially medical professionals, get wrong about cerebral palsy.

Remembering back to a tweet Blemi posted within the last week, Chris echoed how walking independently should not necessarily be the end goal. Like Chris would go on to say, “I think maybe something about mobility devices or other adaptive equipment. I kind of feel like it’s implied that you’re ‘giving up’ if you use them. When really they’re tools.”

Those comments came from Chris when answering her own question about what misconception or thing do people get wrong about CP, adding a focus on medical professionals since, “that’s where that often comes from.”

Meanwhile Devin answered, “That it (CP) has no impact on aging.” What about you? How would you answer the question? Let us make the week’s extend-the-conversation question, “What misconception or thing do people, specifically medical professionals, get wrong about CP?”

Respond in the “Comments” below. Afterwards, mark your calendars to join us each and every Wednesday on Twitter starting at 8pm ET. If you need directions on how to participate in a Twitter chat, checkout my tutorial video, “How to Participate in a Twitter Chat Using a Computer.”

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

-Zachary

Answer for the week's extend-the-conversation question, "What misconception or thing do people, specifically medical professionals, get wrong about CP?"
Answer below!

#CPChatNow Recap- 7/20/2022

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This past week in #CPChatNow was buzzing as always. Members discussed having COVID, annoying comments they receive in public, and their goals for the rest of 2022. 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 a story that Spectrum 1 News in Cleveland did about #CPChatNow co-host, Zachary Fennell, that I was happy to participate in. The story was about his time as a marathoner and his book Slow and Cerebral.

zach shares the spectrum 1 news story about him walking and running and his new book slow and cerebral. there is an image of zach in green shirt and blue baseball cap with blue shorts walking

Next, various members have discussed issues they are having with COVID. I discussed the difficulties with my lingering cough and balance.

Next, Zach talked about member’s goals for the rest of the year:

zach asks about goals for 2022 and tweets he would like to do recaps in a more timely fashion, updating facebook/website cover photos, posting to facebook page more
i tweet my goals are to be more patient and to be a better husband, zach tweets patience is something everyone can be better with and asks whether i can spend more quality time or be a better listener.

Finally, Zach asked how often members experience annoying comments about their disability.

zach asks how often members experience annoying comments, blemi tweets every time she is out in public and zach expressed surprise, i tweeted i do not too much, but maybe because i'm used to it or a wheelchair is more accepted

This brings us to our Extend-The-Conversation-Question: What are your strategies for dealing with annoying comments? Please join us tonight on Twitter at #CPChatNow at 8 Eastern!

-Devin

#CPChatNow Recap- 07-06-2022

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Accessibility emerged as a dominant theme during the weekly cerebral palsy (CP) Twitter chat #CPChatNow Wednesday, July 6th, 2022. Let me, chat co-host Zachary Fenell, tell you more. Consider this your boarding call to hop aboard the recap train. Choo, choo!

On second thought, I should probably refrain from using a train reference here. I say that since I am a week late posting this recap. Enough dwelling over metaphorical details, though. We do not want our focus to derail.

Long-time chat regular Blemi put us on the accessibility track when she mentioned spending the weekend at her mother’s place, also known as Blemi’s childhood home. Blemi even filmed a tour for her YouTube channel. Seeing how the video initiated a lot of the conversation for the July 6th, 2022 chat, I will go ahead and embed the video below.

After watching Blemi’s video, I posed a question to the group.

Participants in #CPChatNow discuss steps taken to make their homes more disability friendly.

I asked participants what steps (no pun intended) were taken to make their homes, either childhood or current, more disability friendly. Both Grace and my co-host Devin Axtman mentioned grab bars and railings in their answers. Additionally, Devin said a detachable shower head.

Meanwhile Grace had an adapted walk-in shower replace an old shower/tub combo. What about you? Keep the conversation going and answer for the extend-the-conversation question, “What steps were taken to make your home, either childhood or current, more disability friendly?” Leave your answer in the “Comments” section.

As the discussion continued, participants made an interesting observation about making homes more accessible.

Devin discusses how over the years his grandparents' house has become more disability friendly.

Devin recalled going to his grandparents’ house and observing how much more accessible the house is now compared to the last time he visited. The cause for the change came from Devin’s grandma needing stuff for her cancer battle.

Between Devin’s comments and insights Blemi shared in her video, I drew a conclusion about accessibility. That conclusion, “Accessibility is evergreen. Even if you don’t have any issues today, life can change just like that.”

Do you agree? Speak up in the “Comments” while answering the extend-the-conversation question. Again, the question asks “What steps were taken to make your home, either childhood or current, more disability friendly?”

This week's extend-the-conversation questions asks, "What steps were taken to make your home, either childhood or current, more disability friendly?"

Once you answer, mark your calendar to join #CPChatNow every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

#CPChatNow Recap- 6/29/22

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This past week in #CPChatNow was bustling as always. Members discussed their upcoming book signing, startle reflex from fireworks, and difficulties of getting employers to accept accommodations. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach talked about an upcoming book signing for his awesome book, Slow and Cerebral.

zach talks about excitement for an upcoming book signing

Next, members talked about Involuntary Startle Reflex Day, the 4th of July, and their plans for the fireworks.

zach asks if people have their earplugs ready for the 4th, chris tweets no because she rarely hears fireworks, zach tweets the last time he saw fireworks was at a cleveland baseball game.

Finally, members talked about the difficulty of getting employers to recognize and accept accommodations:

zach tweeted he feels he has to prove himself when an employer accommodates him to justify the accommodation and blemi tweeted about them holding the accommodation against you

zach tweets his supervisor doesn't hold accommodations against him, i tweet accommodations are a legal right and we shouldn't need to worry about them being held against us.

This brings to our Extend-The-Conversation Question: How do you best advocate for yourself?

Thanks for reading and please join us on Twitter at #CPChatNow at 8 Eastern.

-Devin

#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!