Tag Archives: cerebral palsy

#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

#CPChatNow Recap- 12/29/2021

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The last #CPChatNow of 2021 had members looking back on their highs and lows of the year and what they had learned along with looking forward to 2022. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members discussed their highs and lows from 2021:

zach asks about highs and lows, i tweet getting married and low of the cubs season, zach tweeted his high is progressing on his book and getting promoted at work, low is not getting video work done to work on book, blemi tweeted her high is getting engaged and her low is having to leave work

Next, members discussed what they had learned during the year.

zach asks about life lessons from 2021, chris tweets don't ignore what you think are little or insignificant health issues
zach tweets his life lesson is to focus on the present and that he injured his groin because he was not focused on the present. i tweeted that he stole mine and that sometimes things are worth waiting for.

Finally, members discussed their goals for 2022.

zach asks about goals for 2022, i tweeted to stretch more regularly, he tweeted simple goals can have great results and the cold weather has had him needing to stretch, blemi tweeted continuing to get her health back in order.
stephen tweeted to get a girlfriend, zach tweeted getting a signficant other is hard because things are out of your control and it's better to be single than in a bad relationship, chris tweeted to finish her master's degree.

This brings us to our Extend-The-Conversation Question: What are your goals for 2022? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow!

-Devin

#CPChatNow Recap- 12/22/21

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The #CPChatNow recap is back! This past week in #CPChatNow was bouncing as always. Members discussed holiday traditions, driving, eye surgeries, and more! 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 recognize Stephen Commander on his recent birthday! I hope you enjoyed your day!

I also want to recognize Zach’s cool “Don’t blend in, blend out!” holiday sweater.

zach tweeted a picture of him in blue mask and his green don't blend in, blend out green holiday sweater with white snowflakes, sleighs, and reindeer

Fittingly for a few days before Christmas, members discussed their favorite holiday traditions.

zach asks what members favorite holiday traditions are. stephen said eating homemade chex mix with corn and wheat chex, peanuts, and pretzels
blemi tweets she loves watching people open presents she gave them. zach tweets he loves giving gifts when he doesn't have to ask

Next, members discussed the challenges and opportunities that can come from not being able to drive.

stephen tweets he wishes he could drive and not have to rely on his parents. veronica tweeted she was chauffeured by her son this afternoon.
veronica tweeted it was a condition of him getting his license and second car. veronica tweeted her children learned it is different to have a parent with a disability, but they help pay for his car expenses wile he goes through veterinary school
zach responds to stephen by saying he understands, but he has found benefits to not driving by spending bonus time with people he cares about

Finally, Veronica tweeted about her recent laser eye surgery and members asked questions about it.

veronica tweets about a laser treatment she had her eye to help the lens with reading. i ask if the treatments are painful. veronica tweeted the treatment was not painful, she just heard some clicking sounds and built it up to be worse than it is
veronica asked if members have looked at lasik stating she got lasik done after her cataract surgery to fix her stigmatism, blemi tweeted she is always told she is not a candidate for lasik

This brings us to our Extend-The-Conversation Question: What is your most significant medical procedure you have undergone?

extend-the-conversation question graphic:#CPChatNow multicolored logo in upper right hand corner, what is the most significant medical procedure you have undergone? above a picture of 3 people in medical scrubs working on a patient in an operating room

Please share your answers in the comments and join us each Wednesday on Twitter at 8 Eastern on #CPChatNow!

-Devin

#CPChatNow Recap 12/1/2021

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This past week in #CPChatNow was a banger as always. Members discussed the 8 year anniversary of #CPChatNow, stretching hip flexors, and their favorite part of the holiday season. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

We have a milestone to mark this week, the 8 year anniversary of #CPChatNow! Members discussed the passage of time and Zach shared some history of the chat.

zach tweets we have provided us answers for 8 years with our 8 year anniversary, i tweet that is 2 presidential terms and zach tweets it's time to write a book and jokes oh wait.
zach tweets about members who have been there since near the beginning, blemi, myself, jen, others.
zach tweets december 3rd, 2013 was the first #cpchatnow and shares a graphic with @handicapthis, John Quinn, and @zacharyfenell

Next, I asked if members could share ideas on stretching hip flexors independently. Blemi shared some tips.

i ask if anyone knew how to stretch hip flexors independently. zach tweeted no, but on googling it would be hard for him to do himself.
blemi tweeted to lay on your back with a towel under your knee while moving the towel in the opposite direction, i tweeted i have had hip pain lately, blemi tweeted she got the stretch from her pt and she wraps the towel like a sling to move her leg

Finally, Zach asked about member’s favorite part of the holiday season and #CPChatNow OG, Hannah Pike, chimed in.

zach asked what the favorite part of the holiday season is for members, hannah tweets surprising those that she can and she reminded zach he was on the end of a surprise her dad came up with

This brings us to our Extend-The-Conversation Question: What is your favorite holiday tradition?

extend-the-conversation question graphic, multicolored #cpchatnow logo, what is your favorite holiday tradition? above a picture that says holiday traditions with a variety of gift boxes surrounding it

Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 10/27/2021

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This past week in #CPChatNow was “A Happening” as Gorilla Monsoon would say. Members discussed driving, Halloween plans and struggles, and how they would describe the year 2021. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members discussed what went into the decision on whether to drive or not with a variety of considerations going into member’s decisions.

zach asks what factors went into people's decision to drive or not, veronica tweeted there is a lack of hand eye coordination and everything is set up for right handed people and her right hand doesn't work
blemi tweets she did not feel she would not be able to, zach tweets he has a dull sensation in high right leg from back surgery complications and hand controls make him nervous due to hand-eye coordination and that if his hand-eye coordination isn't good enough to play little league, should he be driving?

Next, members discussed their Halloween plans and concerns they have surrounding accessibility of trick or treating.

zach asks if anyone has halloween plans, carrie tweets she is taking her daughter out to trick or treat and that she hates walking in the dark so she is glad she has a coop behind her and she is praying it is not raining, zach tweets navigating front steps is the trickiest part of trick or treating and many front steps don't have a handrail

Finally, Zach asks members how they would describe the year 2021 at this point.

zach asks what word members would use to describe the year 2021 and what they plan to accomplish still, veronica used the word frustrating with her eye still adjusting to a new lens, zach tweets his theme is patience with two job rejections, a groin strain, and progressing on his book.

This brings us to our Extend-The-Conversation Question which is inspired by Halloween: What is your favorite Halloween costume of all time?

extend-the-conversation question graphic, multicolored #cpchatnow logo, extend-the-conversation question in green with what is your favorite halloween costume of all time below with a photo of family in halloween costumes

Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow. Thanks for reading!

-Devin

#CPChatNow Recap- 10/13/2021

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This past week in #CPChatNow was hopping as always. Members discussed showing off their new walker, disability related books they would recommend, and the reasons they read. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I wanted to give kudos to Blemi for showing off her new pink walker to help promote her Youtube channel. Making mobility aids “cool” is a challenge for disabled people, so any time we can it’s worthy of praise!

zach asks if blemi has had a chance to show off her pink walker, blemi tweeted she did a photo shoot with it with an instagram account that wants to feature her. she said it is a big deal because she used to only take photos from the waist up. zach tweeted it is an incredible feeling when others reach out and they want to partner with you or feature you.

Next, the rest of the chat turned to books and reading. This may have been inspired by Zach finishing the manuscript on his latest book! First, Zach asked members what disability related book they would host for a discussion.

zach asks what disability related book members would choose for a discussion, i tweeted john quinn's or judy huemann's book. huemann's book illustrates disability history and john explains cp so well. zach tweets john's book is one of his favorite books period, blemi tweets sitting pretty by Rebeckah Taussig

Finally, talk turned to the reasons people read. Members shared a variety of reasons. Also, you can find Emily Ladau’s book Blemi references here.

zach asks why members read and offers some reasons such as escape from reality, self-improvement, inspiration. blemi tweets she reads for the pleasure of it. zach tweeted he read for multiple reasons, sometimes escape from reality, others better skills (finance), or disability related material because they open him to other's experiences. blemi tweeted she picked up Emily Ladau's book Demystifying Disability
zach tweets he will eventually get to emily's book, but he has other things on his list. i tweet i mostly escape reality, but i like current event books.
extend-the-conversation question graphic: multi-colored #CPChatNow logo in upper right hand corner, extend-the-conversation question in green, what is your favorite book of all time? above a picture of books on a shelf, #CPCHATNOW in white letters in front of a green background on the bottom.

Please share your answers to the Extend-The-Conversation-Question in the comments and join us each Wednesday on Twitter at #CPChatNow at 8 Eastern!

-Devin