Tag Archives: cerebral palsy

#CPChatNow Recap- 11/2/2022

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This past week in #CPChatNow was bouncing as always. Members discussed books they are reading, funny conversations related to disability, and Halloween. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Zach had a book recommendation for #CPChatNow, True Biz, by Sara Novic.

zach asks if anyone has read True Biz by Sara Novic. he tweets it's about a school for deaf and differences in the hearing/deaf worlds. he's reading for a book discussion and enjoying it. chris tweets she has been reading about education in East Africa as part of her job.

Next, I shared a conversation I had on the train with a familiar theme for disabled people, people being amazed that disabled people have jobs and live regular lives.

i tweeted about a conversation on the train where a lady asked me if i worked and i explained my job and the person responded '"Good for you!"

Stephen asked what members did for Halloween.

stepehn asks how everyone's halloween was. i tweeted my wife is tired because is a teacher. zach tweets his was uneventful and stephen watched the curse of bridge hollow

Finally, Zach and I talked about what we are most excited for and most dreading in November.

zach asks what member's least and favorite parts of November are. i tweet Thanksgiving and my birthday and getting colder in my least favorite part. zach tweets Thanksgiving and family and snowstorms is his least favorite part

This brings us to our Extend-The-Conversation Question: What were your Halloween traditions growing up?

Please share your Halloween traditions in the comments and join us at 8 Eastern at #CPChatNow! Thanks for reading!

-Devin

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#CPChatNow Recap- 9/28/22

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This past week in #CPChatNow was rocking as always. Members discussed things such as their emergency preparedness plans and what they do for relaxation. 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 this great picture of Hannah and some friends. We are thinking of you Hannah!

hannah tweeted she is popping in to share a happy note that she got to meet her nonbiological sister. there is a picture of hannah with her friend's mom and hannah is holding her dog levi

Next, Zach asked members about their personal emergency preparedness plan, a timely topic given Hurricane Ian. Most members stated they did not have much of a personal emergency preparedness plan. Zach shared a link to a series he previously did for Handicap This on emergency preparedness and disability.

zach asked about members emergency preparedness, i tweeted that i don't think about, but i should. thomas tweeted a recommendation to memorize things to not trust on technology, chris tweeted she does not really have an emergency plan and hoped they don't have an earthquake.

zach tweeted a 3 part series on emergency preparedness he wrote for handicap this and that those in safer states think they don't need to plan, but they do

Finally, Chris talked about her recent exploration with progressive muscle relaxation.

chris tweets about progressive muscle relaxation with her therapist sending her a video she can follow. chris tweets progressive muscle relaxation allows her to relax and recognize body signals like when she is beginning to tense up

Veronica and Chris discussed the difficulties they have had relaxing during medical appointments.

veronica and chris tweet about difficulty relaxing during things like mammograms and chris tweeted her therapist's video with concrete actions help. veronica tweeted it is hard to relax when trying not to fall over

This brings us to our Extend-The-Conversation Question: What are things you do to relax? Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 8-31-2022

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

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

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

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

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

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

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

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

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

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

-Devin

#CPChatNow Recap- 8/17

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

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

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

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

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

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

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

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

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

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

-Devin

#CPChatNow Recap- 8/3/2022

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

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

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

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

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

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

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

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

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

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

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

-Devin

#CPChatNow Recap- 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