#CPChatNow Recap- 6/15/22

This past week in #CPChatNow was bustling as always. Members talked about acceptance of CP, aging with CP, and the importance of walking. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Stephen asked Zach when he accepted his CP and this led to a conversation about adjustment to disability:

stephen asks zach how long it took to accept his cp, zach tweeted he was 18 or 19, but it still can be a work in progress, i tweeted i don't think someone is ever fully adjusted to cp as life happens

Next, talk turned to a common topic among #CPChatNow members, aging with CP, after Chris shared an article about functional decline.

chris tweeted about an article about functional decline with cp

zach tweets about kids with cp having access to state and federal programs with insurance and a deficit for adolescents and adults, chris tweeted even people recognizing CP impacts adults differently and causes sorts of problems which we have to start teaching people

Finally, talk turned to the importance (or lack thereof) of walking. Members discussed the importance of staying active while also listening to their body as aging happens.

zach tweets about me saying not walking isn't bad and that walking can be bad if it puts extra stress on the body in order to walk independently. chris speculates this could have led to her arthritis, but she expressed frustration that doctors emphasize activity. zach tweets there is a need for balance with activity being important and nutrition being another piece with sleep also being important.
chris tweets she felt seen by the article she shared and with the struggles and frustration of watching her body change after being told it wouldn't while planning for life one way and cp impacting her body differently. grace tweets that her doctors overemphasize walking and walking without devices where they promise stability if you do that which not everyone can.

This brings us to our Extend-The-Conversation Question: What are some aspects of functional decline you have noticed with CP and aging? Please share your answers in the comments.

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

-Devin

#CPChatNow Recap- 06-08-2022

Week in and week out those in the cerebral palsy (CP) community gather on Twitter Wednesday night for the live Twitter chat #CPChatNow. Wednesday, June 8th, 2022 proved no different. To delve into the details, I am chat co-host Zachary Fenell. Come join me for your weekly recap.

One topic which seemed popular revolved around spasticity.

Participants in #CPChatNow answer if they feel their spasticity increases when they feel like they are being watched.

Spasticity arose as a subject when I asked participants if they felt like their spasticity increases when they feel like they are being watched. To clarify what I meant by the question, I recalled an example. Years ago while signing a waiver, my hand began shaking more than usual. Alessandro let me know I was not alone by enthusiastically replying, “Hell yes #cpchatnow.”

Meanwhile, Timmy stated his spasticity increases when he thinks about it. Chris offered additional insights noting she knows, “spasticity changes and is pretty sensitive to happenings.” Keep the conversation going and answer for the week’s extend-the-conversation question, “What do you notice changes your CP’s spasticity levels?” Answer in the “Comments” section.

First though, allow me to finish recapping the discussion from June 8th, 2022. Besides spasticity, participants discussed their favorite social media platforms.

The #CPChatNow community discusses their favorite social media platforms.

Curious, I asked participants to name their favorite social media platforms. Jen said her top two are Twitter and Instagram. Replying to Jen, I explained I find Twitter, “good for getting to meet people you don’t know yet.” Continuing, I complimented Facebook as, “good for keeping in touch with people you already know.”

Sentiments Chris agreed with, mentioning thanks to Twitter she has, “met cool people and learned all kinds of things.” The fondness for Twitter showed up elsewhere in the chat too.

Stephen expresses his love for everybody in the #CPChatNow community.

Indirectly showing admiration for Twitter, Stephen expressed how much he loves everybody in the #CPChatNow community. Experience the community for yourself by joining us each and every Wednesday. The fun kicks off at 8pm ET.

In the meantime, remember to answer the week’s extend-the-conversation question, “What do you notice changes your CP’s spasticity levels?”

This week's extend-the-conversation question asks, "What do you notice changes your CP's spasticity levels?
Answer below.

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

-Zachary

#CPChatNow Recap- 06-01-2022

Friendly vibes emanated from the cerebral palsy (CP) Twitter chat #CPChatNow Wednesday, June 1st, 2022. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap!

Early in the evening participants discussed housework.

Participants in #CPChatNow discuss their favorite and least favorite housework.

Housework arose as a subject after Veronica mentioned spending the day doing such work. Curious, I asked everyone about their favorite and least favorite housework. Answering my own question, I said dusting and cleaning dishes are my favorite housework. On the opposite end, putting on bedsheets is my least favorite because the corners always seem to come undone. Frustrating!

Meanwhile Stephen said his favorite housework is taking out the trash. Unlike Stephen and myself, Veronica said she had no favorite. As far as least favorites go, Veronica named dishes and laundry. She explained, “They’re never actually done.” A truth, seeing how we are always dirtying more dishes and clothes.

As the night continued, so did the friendly dialogue.

Alessandro and Zachary discuss Alessandro's Jordan's collection.

Alessandro shared he now has 100 pairs of retro Jordan’s in his collection. Looking to learn more, I asked Alessandro about his collection. When did he start his collection? What compelled him to start the collection? A big part turned out to involve the fact Alessandro grew up in Chicago in the 90s, meaning, “Jordan is everything.”

What about you though? Answer for the week’s extend-the-conversation question, “What do you collect? What made you start the collection?”

Answer below in the “Comments.” Afterwards, mark your calendar to join #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, "What do you collect? What made you start the collection?"
Answer below!

#CPChatNow Recap-5/25

The #CPChatNow recap is back! This past week in #CPChatNow was rocking as always. Members discussed things like what they do when they’re nervous, attending comic cons, recommendations for TV shows, and if they have ever felt “normal.” This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Stephen asked what members do when they are feeling nervous.

stephen asks how members deal with feeling nervous, zach tweets the answer depends on why he's nervous, and that the nerves might be a good thing and that they might be trying something new, stepehn tweets he is going back to the exceptional foundation, jen tweets she tries to breathe

Next, Jen talks about a comic con she is going to go to and she asked for any tips people have.

jen tweets she is going to a comic con and asks if anyone has any tips, i ask if they have any ADA lines and advised her to check the website

zach advises to jen to make a list of people she wants to meet the most and see them first and also do what is comfortable social distance wise

Next, Zach asks if anyone has recommendations for new TV shows to watch.

zach asks if anyone has recommendations for tv shows, i recommend severance on apple tv and as we see it on prime
grace lapointe recommends orphan black on prime and tweeted about an essay she wrote that is her pinned tweet, zach tweeted it sounds compelling and he would read the essay after watching the show

Finally, Zach asked if members had a moment where they wondered if this is what “normal people” feel like:

zach asks if members have ever had a moment where they thought this is how normal people feel and this came to his mind after he stretched his hamstrings with his knee immobilizer/cast.

chris tweets when wakes up feeling a little rested and that lasts 10 minutes, zach tweets that having a sleeping disorder must be a living nightmare, i tweet that i can't say i have, but i don't dwell on it

This brings us to our Extend-The-Conversation Question: What is your favorite TV show of all time? Thanks for reading and join us each Wednesday at 8 Eastern on #CPChatNow at Twitter.

-Devin

#CPChatNow Recap- 05-11-2022

Each Wednesday participants in the cerebral palsy Twitter chat #CPChatNow gather to enjoy dialogue and community. Wednesday, May 11th, 2022 proved no different. To tell you more, I am chat co-host Zachary Fenell. All aboard for your weekly recap!

Personally, my co-host Devin Axtman helped to kick the night off on a positive note for me.

Devin offers Zachary feedback on Zachary's new book Slow and Cerebral.

The positivity generated from Devin giving me feedback on my new book Slow and Cerebral. Specifically, Devin commented, “It’s such a good read!” Intrigued by the discussion, Stephen wanted to know where you can get a copy. Slow and Cerebral is available on Amazon in the United States, as well as internationally in countries like Canada, Australia, and the United Kingdom. I mention those countries because our community includes participants living there.

Slow and Cerebral is a memoir about accomplishing the “unreasonable.” For me, that meant not letting my cerebral palsy stop me from becoming a marathoner. An accomplishment only made possible by facing challenges. Fittingly, as the chat continued, we discussed challenges.

#CPChatNow participants discuss the challenges they face due to their disabilities.

Initiating the challenges discussion, I asked participants, “What do you find most challenging about having cerebral palsy (or whatever disability you have)? How do you handle this challenge?” Answers varied. For instance, Chris mentioned as a CP based challenge, how much her spasticity varies day to day. To handle this Chris stretches, uses heat, trigger point release, and massages her sore spots.

Meanwhile AcquiDis replied, “Living with and doing well with a medically acquired disability.” AcquiDis continued, noting doing well with a medically acquired disability, “is a contradiction to that which is expected for this condition throughout history.” Adding, “It (cerebral palsy) is often ‘feared’ and misunderstood because of its difference.”

AcquiDis’s sentiments resonated with me. I suggested that fears and misunderstandings about cerebral palsy are based off misconceptions and stereotypes. What do you think? Answer for the week’s extend-the-conversation question, “What do you think causes people to be fearful and misunderstanding of disabilities?”

This week's extend-the-conversation question asks, "What do you think causes people to be fearful and misunderstanding of disabilities?"
Answer in the “Comments.”

To let us end on a positive note, also add “How could we help dispel the fear and misunderstanding surrounding disability?” Leave your ideas in the “Comments.”

Afterwards, mark your calendar for #CPChatNow. Our Twitter chat happens every Wednesday, starting at 8pm ET.

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

-Zachary

#CPChatNow Recap- 5/4/22

The first week of May in #CPChatNow was hopping as always. Members discussed about honoring their family, Zach’s new book, shoes and CP, and exercises and CP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. Hop on the recap train, all aboard!

First, I want to recognize and honor Hannah’s dad’s memory. Hannah is a valued member of #CPChatNow and one of the toughest people I know. We love you Hannah!

hannah tweeted she is sad because it is 2 years since her dad died, the tweet includes pictures of her dad, her dog, and a picture of hannah

zach tweets that 2 years is hard to believe and it seems like it's just months ago since he was enjoying cone in bill's car and it took awhile to realize both their dads were named bill. he also tweeted he loves the photos of his dad and the smile captures his personality beautifully

Next, I would love to promote Zach’s book on his journey to becoming a marathoner with CP, Slow and Cerebral. You can find it here.

i tweet my excitement about getting zach's book, there is an image of his book slow and cerebral

Next, Stephen asked about a common annoyance for people with CP, shoes. Stephen asked people how many shoes they go through in a given year. Alessandro also shared his Air Jordan collection.

stephen asked how many pairs of shoes people get in a year, veronica said one every 3 or 4 years because she hates shopping, i tweet that i have one pair of old man velcro shoes that lasts 2-3 years, zach tweets he has one pair per season, alessandro says he has too many because he collects Jordan's

Finally, members discussed another common topic with CP, CP friendly exercises. Veronica also shared a tremendous link with some resources.

i ask how people learn cp friendly exercises, zach tweets he learned them in PT, but he has learned some online, veronica also tweets pt and thomas tweeted about swimming and pt

This brings us to the week’s Extend-The-Conversation Question: What is your favorite exercise to help your CP?

extend-the-conversation question graphic "What is your favorite exercise to help with you CP? Multicolored #CPChatNow logo in upper right hand corner with image of a man doing stretches

Thanks for joining us on this week’s recap and join us tomorrow and every Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#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

#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- 3/6/2022

This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. Members discussed walking, their strategy when leaving big events, and people without disabilities showing their privilege. All aboard!

First, Stephen brought up the exciting fact that he is walking again and the independence it allows him to feel. Zach and I discussed how mobility devices can also lead to feelings of independence.

stephen tweets he likes walking because it makes him feel independent, i tweeted it is nice, but a wheelchair can too depending on the distance, zach tweets this goes for any mobility device and pointed out a cane helped him become a marathoner

Chris tweeted about her goals to be more active:

chris asks stephen if he wants to get enough strength to walk or walk instead of roll, chris tweets she needs to be more active and might explore an adaptive bike program

Next, members discussed a common issue that people with CP and other issues face, deciding to leave events early to beat the crowd or stay later after people had left to allow the crowd to disperse.

zach asks if members leave early at big events to avoid crowds or stay until the end and wait for the crowd to disperse. veronica tweets it depends on how much she is enjoying the event, she sometimes leaves early and sometimes waits until the end.
blemi tweets she stays until the end because she would rather be slow than miss something. zach tweets he likes to be one of the last to leave at baseball games

Finally, Stephen brought up that he feels that people without disabilities do not always check their privilege. Chris and I discussed what we felt were examples of this during the pandemic.

stephen tweets he does not think abled people always check their privilege. chris tweeted they definitely don't and she discussed a friend that took her awhile to understand why chris is so concerned about covid. i tweeted there are many things i can say about the pandemic, but i did find it interesting during quarantine when people complained about things disabled people face daily

This brings us to our Extend-The-Conversation Question: What are some ways you feel people without disabilities have privilege? Please share your answers in the comments and join us tomorrow at 8 Eastern on #CPChatNow.

-Devin

#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!