Tag Archives: cerebral palsy community

#CPChatNow Recap- 12/18/2019

Posted on by

This past week in #CPChatNow was festive as always. As you might imagine, talk centered largely around the upcoming holidays, but other topics were also discussed. Hop in the sleigh for this week’s #CPChatNow recap led by your Co-Host, Devin Axtman.

First, we have an announcement. #CPChatNow will be changing dates to Thursday for the next two weeks due to the holidays.

Zach announcing the next #CPChatNow is Thursday instead of Wednesday

Kate joined us after graduating nursing school and shared some of her challenges of being a nurse with CP. She shared she would feel very fatigued when coming home from work:

Zach congratulates kate on graduating nursing school. kate shared cp added trouble to starting her job.

Next, not surprisingly talk to turned to the upcoming holidays. Talk turned to cooking for family and what made a kitchen accessible and CP friendly:

zach asks heather what makes a kitchen accessible. she likes prep surfaces where she can sit down and cut-proof gloves. zach tweeted he likes sitting uses knives

Zach then asked if people put up a Christmas tree and if CP impacted their ability to do so:

zach asked if people put up a christmas tree and if CP made things difficult. chris said she does not and heather tweeted she only did if she was hosting. i tweeted we have a small tree, but i need a lot of help with decorating

Finally, Zach asked what people’s favorite Christmas traditions were. People talked of getting together with family and looking at Christmas lights.

zach asked about christmas traditions. he tweeted about christmas eve at grandma's and getting in the car to look at christmas lights. kate tweets about liking christmas eve more than christmas. zach tweeted christmas eve is when his extended family got together

This brings us to our Extend-The-Conversation Question: What is your favorite Christmas tradition? Make sure to share your answers in the comments and join us on Thursday at 8 Eastern at #CPChatNow.

-Devin

#CPChatNow- 10-30-2019

Posted on by

On the day before Halloween, #CPChatNow was busier than a chainsaw in a haunted house. Members talked about carving pumpkins and Halloween plans, inspiration porn, and naming mobility devices. This is #CPChatNow co-host, Devin Axtman taking you along for the ride on this week’s recap.

First, members discussed their plans for Halloween. Zach dressed up as a professional for Halloween.

Zach discussed dressing up in slacks and a dress shirt instead of his typical t-shirt, polo, or long sleeve shirt
A picture of Zach as a professional- zach in yellow dress shirt, brown tie, and black slacks with a brown belt

Next, I shared a story that has gone viral recently, a mom helping her son with Cerebral Palsy experience the skatepark and proclaimed that was better than inspiration porn

i tweeted the video of the mom helping her kid with cp skate at the skate park. Zach and blemi expressed excitement about the story with me saying it was better than inspiration porn

This led to talk about a common topic with disability, inspiration porn. This discussion was a bit different in that it talked about the definition of inspiration porn and how it fit into taking someone with a disability to prom.

Beau c asks if facebook posts inspiring someone are inspiration porn. I tweeted it depends on the intent of the post, who told the story, if it was actually inspiring
Beau C tweets he does not mind people saying him driving his wheelchair across a major highway is inspiring
blemi tweets to her inspiration porn comes from the media giving someone attention for asking someone to prom and feeling like they need to rescue someone. beau tweets they feel the person being asked to prom is in the moment. blemi tweets she feels the problem is people asking for the recognition

Finally, the talk turned to whether people have named their mobility aids. Zach tweeted he was thinking about naming his cane and Blemi tweeted that she is thinking about naming her canes:

zach asks whether people have named their mobility aids. zach tweeted he was thinking of planters since it reminds him of the cane the peanuts guy has. blemi tweets she has 3 canes and zach suggests she names them as a group

Zach wrote a blog about destigmatizing mobility devices and said he got tired of writing “my cane.” Jeni tweeted about naming her elbow crutch, but not naming her AFOs.

zach said he got tired of writing "my cane" while writing a blog about mobility aids. jeni tweeted she is going to let her niece name her elbow crutch, but she doesn't name her AFOs

This brings us to our Extend-The-Conversation Question: Have you ever named your mobility device? Please share your answer in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

-Devin

#CPChatNow Recap- 10/16/2019

Posted on by

#CPChatNow was active as always last week. Members discussed things such as what makes someone courageous, how their CP can help them avoid hazards, and the difficulty of asking for help. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach asked what it is that makes someone courageous. I shared my opinion that courage is doing something that is needed even if you are scared.

Zach and I discuss what makes somebody courageous. I share it is doing something that is scary, but doing it anyways. Zach shared he felt it was not letting fear stop you.

Next, Zach talked about avoiding tripping at a family clam bake due to being extra conscious of a misplaced step.

Zach tweets he avoided tripping over a step at a clam bake due to being conscious due to CP. Paul tweets he is the same way because of his wheelchair and walking with braces and crutches. Zach tweets he looked for trip hazards at high school reunion.

Next, talked turned to a difficult issue that many people with Cerebral Palsy and disabilities in general face, asking for help. I shared I sometimes don’t ask for help due to the many things I am unable to do and wanting to maximize the things I can do. Zach shared a similar story at the clam bake.

I shared I don't ask for help because there's a lot I can't do and I want to maximize what I can do. Zach shares a scenario of carrying his drink at clam bake and needing to ask for help.

Hannah and Zach tweeted about the feelings surrounding asking for help.

Hannah also tweeted agreement with help sometimes feeling condescending while sometimes she has a sense of appreciation. She tweeted sometimes it relates to the quality of the relationship and sometimes it's her self consciousness.

Hannah and Zach also tweeted further about the fear of being a bother:

Zach and Hannah tweet about being independent to a fault and the fear of being a bother even if they don't see them that way. Zach tweeted he was nervous about working with the Towpath Marathon. Zach tweets this has helped him build confidence to not be a burden.

I want to go back to Zach’s tweet about the step and the clam bake. I know I have been in situations where my CP spidey sense saved me from a sticky situation that people without CP experienced. This brings us to our Extend-The-Conversation Question: How has CP helped you avoid bad situations able bodied people experienced? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow on Twitter.

Extend-the-conversation question in green. How has CP helped you avoid bad situations able bodied people experienced? below with a stop sign in the bottom right hand corner and the multi-colored #CPChatNow logo in the top right hand corner.

-Devin

#CPChatNow Recap- 09-04-2019

Posted on by

Alongside each Wednesday comes community, at least for participants in the weekly cerebral palsy Twitter chat #CPChatNow. I am chat co-host Zachary Fenell. Welcome to the September 4th, 2019 #CPChatNow recap. The night began on a celebratory note.

Devin and Zachary wish Jen a happy birthday.

My co-host Devin Axtman started the night by wishing long-time chat regular Jen a happy birthday. Jen would respond, letting us know she indeed enjoyed a happy day.

Jen celebrated her birthday by going to the zoo!

Jen celebrated her birthday by going to the zoo! She even captured a cool video featuring a penguin. Unfortunately, another long-time chat regular experienced a much less fun day.

Health woes continue plaguing beloved #CPChatNow member Hannah. She described her last two years as “constantly fighting.” No matter how long the fight lasts, our community will remain in her corner.

Elsewhere in the chat I asked participants to give me feedback on potential shirt designs.

Zachary asks #CPChatNow for input on potential shirt designs.

Personally, I am looking to release a shirt promoting a message I find especially meaningful. If you read my recaps before, you heard the message because I end my recaps with these words. “Don’t blend in. Blend out!”

Responding, participant Jeni said she liked the second option. Beyond the message, Jeni liked that the design contains Seahawks colors. She reasoned those colors would draw a lot of attention. Plus irritate her sister, a 49ers fan!

Sports and team rivalries provide a great way to develop connections and friendships. Although, any common interest would do the same. For example, most in the chat know Devin, myself, and a few others share an interest in wrestling.

Devin and Zachary talk professional wrestling.

What about you? Answer as the week’s extend-the-conversation question, “What is an interest that has helped you develop friendships?” Respond below in the “Comments.”

Then add our Twitter chat to your weekly schedule. The chat happens every Wednesday, starting at 8pm ET. I hope to tweet you soon.

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

-Zachary

This week's extend-the-conversation question asks, "What is an interest that has helped you develop friendships?"
Answer in the comments below!

#CPChatNow Recap- 8-14-2019

Posted on by

This past week in #CPChatNow was buzzing as always! Members talked about various things such as therapy they enjoyed over the years, learning to fall, and disaster preparedness with a disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we start with a dreaded subject when you have CP, falls. This was sparked by a post in The Mighty about falling. Members discussed things such as learning to fall and their fear of falling. Hannah learned to fall so well she taught others!

Zach asks if members have been afraid to fall. Hannah tweeted she never feared it and she taught a teacher's daughter how to fall

Zach shared his fears about falling were largely about messing up large events. I shared I had to wear wrist guards due to fear of hurting myself. Heather did not have to worry about this since her mom is a nurse:

Devin tweets he's not afraid, but mindful, zach tweets his fears are screwing up big events, I tweet that I wore wrist guards on the playground. Heather tweeted she did not, but her mom is a nurse.

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes:

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair:

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair
Zach tweets about getting nervous under pressure and then states he might surprise himself, but both agree they hope they never have to find out

We have talked about some heavy things in this recap, so I would like to end by focusing on a lighter topic. Therapy is a constant in many people’s lives with CP. Zach focused on therapy that was effective for us. Grace and I discussed horse therapy:

Zach tweets and asks about a therapy that helped you. I tweeted I loved horse therapy and Grace tweeted she had it from 6-18. Zach tweets he had PT on a weekly basis from 3 until starting college.

This brings us to our Extend-The-Conversation Question: What was your favorite moment in therapy? Please share your answer in the comments and join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

A picture of a woman jumping and smiling before a purple sky. What was your favorite moment in therapy? is above her head in white and Extend-The-Conversation-Question is below her in white with a white #CPChatNow in the lower left hand corner.

#CPChatNow Recap- 7/3/2019

Posted on by

It was the day before the 4th of July and #CPChatNow brought the fireworks as usual. Members talked about fireworks, disability podcasts, wheelchair seats at sporting events, and just how far you mind can help overcome your disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride of this week’s recap.

First, members talked about fireworks themselves. Fireworks are also known as the bane of existence when you have the Cerebral Palsy startle reflex.

Zach asked if fireworks startled members. Jen stated they do and Daryl Perry agreed

Next, Zach brought up the cool story of Peter Kline. He has completed 45 marathons with disabled rider athletes. Well done Mr. Kline!

Zach posts about Peter Kline completing 45 marathons with different rider athletes
Paul Miller and Addiengeorge tweeted their appreciation towards Peter Kline

I would like to highlight one of my favorite podcasts (disability or otherwise), the Disability Visibility podcast. The podcast is hosted by Alice Wong and looks at different issues surrounding disability:

I recommend the Disability Visibility podcast. Zach recognized the host, Alice Wong, from the #CripTheVote chats.

Next, members talked about wheelchair seats at sporting events. Chris is going to an Indy Car race in Portland in September. She talked about an organization, @halfaccess, where people can post about the accessibility of a venue.

Zach tweeted about going to Bowling for Soup but being concerned about standing room only conditions. I reported it sucked when other people stood up when I had wheelchair seats and newer stadiums with elevated seats tended to be better. Chris tweeted about an organization called halfaccess that catalogue accessibility

Finally, #CPChatNow was tagged in an intriguing question by @cpandm. They asked if it was OK to be frustrated by others saying, “The body will do what you decide to make it do.” In other words, whether it is OK to be frustrated by your mind not being able to will your body to do things.

I responded to @cpandm's question. They felt frustrated since they can't will themselves to walk. I posted that the body doing what the mind wants it to do is unrealistic and that the will can't overcome things.
Zach's answer was that every case is different and the realm of possibility is different and that we need to listen to our bodies.

This brings us to our Extend-The-Conversation Question: How do you know when your body is telling you you’re at your limit? Share your answer in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

Thanks for reading!

-Devin

#CPChatNow Recap- 4/24/2019

Posted on by

Hello Internet! #CPChatNow was buzzing last week. Members talked about walking in the rain, their favorite photo of themselves, and the need for rails while using stairs.

Zach and I lamented about recent experiences while walking and rolling in the rain.

i tweeted about needing a wheelchair umbrella and my poncho died on the way home, zach tweeted he needed a hat umbrella and that kind people recently gave him a ride home

Next, Zach shared one of his favorite photos of himself being near his goal of completing a marathon:

zach sharing his favorite photo of him passing mile marker 25 during his marathon

Zach asked about what side of the street members with Hemiplegic Cerebral Palsy prefer to face. This then morphed into a conversation about stairs and handrails:

zach asked about which side of the street members with hemiplegic cp prefer to face. jeni tweeted no preference, but she prefers to walk on the inside of the sidewalk if possible
ciaran tweeted he likes to have a railing on his unaffected side, zach tweeted he likes his good leg facing the street, zach goes without railings to build his balance, i tweeted lack of railings was an issue at wrigley field
zach tweeted he has been to wrigley and saw the cubs and brewers play in 2013 when he only went up one steps. zach also lamented the gap between gymnasium rails and the strategy he uses to move to the next rail

This brings us to our Extend-The-Conversation Questions (for the hemis): Are there particular things you like to do with you non-affected side?

Thanks for reading! Join us each Wednesday at 8pm Eastern on Twitter. Use the hashtag #CPChatNow!