Category Archives: Weekly Recaps

#CPChatNow Recap- 05-11-2022

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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

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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

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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

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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

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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

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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- 3/23

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This past week in #CPChatNow was rolling as always. Members discussed happenings from their lives such as cooking classes, updates on their book, and walking on pavement versus grass. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, Veronica shared a cooking experience she won with Chef Michelle Bernstein.

veronica tweets she won an online cooking experience with chef michelle bernstein and she was glad it's on saturday so she has assistants chris tweets she enjoys cooking shows and knows she's. veronica tweeted it looks like a fun experience and then she say they want 4 courses and all the prep work done before teh instruction

Also, Zach shared the latest update on his book about becoming a marathoner, Slow and Cerebral.

zach shared a book update about his book, slow and cerebral. he is still going through the final edits and it will be released in april

Finally, Zach asked members what surface is easiest for them to walk on, pavement or grass.

zach asks members if walking on pavement is easier than walking on grass. i tweeted i agree pavement is easier because it is more predictable, chris tweeted pavement due to the yard at her house having all kinds of dips and that she has tripped

This brings us to our Extend-The-Conversation Question: What do you feel is the hardest surface to walk on? Please share your answers in the comments and join us at 8 Eastern each Wednesday on Twitter at #CPChatNow!

extend the conversation graphic. #cpchatnow logo with What do you feel is the hardest surface to walk on? above a picture of two people walking on uneven cobblestone

-Devin

#CPChatNow Recap- 3/16/2022

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This past week in #CPChatNow was exciting as always. Members discussed routines they need to get back to, interests CP has contributed to, and what they would do if they did not have CP for a week. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I would like to share an update about Zach’s upcoming book, Slow and Cerebral.

zack tweeted he is working on edits for his book, slow and cerebral. he hopes to be done by sunday night.

Members also talked about routines they need to get back into.

zach asked about routines members need to get back into. chris tweeted she needs to start physical therapy and being more active. stephen tweeted he needs to start walking

Members also discussed interests they feel CP has contributed to.

zach asks how cp has influenced people's interests. blemi tweeted she feels she wouldn't be much of a reader. zach tweeted he feels cp led to him being a writer and to grow as a writer. he tweeted this goes back to his interest in cleveland baseball once he realized he wouldn't play baseball. he felt writing would be the next best thing.

Finally, members discussed what they would do if they didn’t have CP for a week.

stephen asked what members would do if they did not have cp for a week

This brings us to our Extend-The-Conversation Question: What would you do if you didn’t have CP?

extend-the-question graphic: what would you do if you didn't have cp for a week? An image of the days of the week written on sticky notes in front of a gray background

#CPChatNow Recap- 03-02-2022

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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-2/23/2022

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This past week in #CPChatNow was buzzing as always. Members discussed their plans for Cerebral Palsy Awareness Month, frustrations with insurance, dealing with the cold, and Erin stopped by to share her paintings! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Longtime member Erin stopped by to share her new painting venture at E’s Messy Gallery .

erin announced a caption contest for her messy gallery facebook page, tweet has images of erin's paintings and her holding a painting
erin tweets she throws her pain brushes occasionally. her personal caregiver puts duck tape on the ends of her brushes and she had a studio built with a sink in the floor. an image of erin with a red shirt and paint splotches

Next, members discussed frustrations with insurance. Alessandro is thinking about a knee replacement and Erin is battling with insurance to get a talking device.

alessandro discusses the possibility of knee replacement, but says he can't afford it, zach tweets it sucks we make decisions about wellness based on what we can afford vs what is best for us, erin shares an example of getting a talking device funding by insurance and tweets about how they don't care if it enhances her career

Members also discussed how they deal with the cold. Zach tweeted he uses a heating pad and Erin shared she moved to Florida.

zach tweets his shoulder stiffened up while reading. he tweets he got his heating pad out to relieve the pain. he asked what people do to counter the cold, erin tweeted she moved to florida

Finally, Zach tweeted about his plans for CP Awareness Month, releasing his new book!

zach asked if members had plans for CP awareness month. stephen tweeted he did not and asked zach for his plans. zach tweeted the plan is to release Slow and Cerebral but that depends on the proofreader feedback.

This brings us to our Extend-The-Conversation Question: What are your tips for dealing with insurance? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

-Devin