Tag Archives: cerebral palsy

#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- 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- 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- 6/15/22

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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-5/25

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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- 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- 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- 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-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