#CPChatNow- 10-30-2019

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- 10-23-2019

Shared experiences captivated the discussion Wednesday, October 23rd, 2019 during the live cerebral palsy Twitter chat #CPChatNow. I am chat co-host Zachary Fenell here to tell you more. The best way I know how too. Your weekly recap!

Early in the night I mentioned feeling a bit under the weather due to a cold. This led long-time chat regular Blemi to ask a question.

#CPChatNow participants discuss whether cold medicine affects their spasticity.

Blemi wondered whether cold medicine affects my spasticity. I answered no, but noted I must take non-drowsy medications. Drowsy cold medicines do not mix well with my baclofen.

Meanwhile my co-host Devin Axtman provided Blemi reassurance, saying cold medicine impacts his spasticity. What about you? Answer for the week’s extend-the-conversation question “Do you find cold medicine really affects your spasticity?”

The usual routine applies. Leave your response in the “Comments” section. First though, let us continue recapping the October 23rd Twitter chat.

Devin asks #CPChatNow, "What situations have you avoided because of your CP that people without haven't?"

Devin fueled the conversation asking participants to share situations they avoid because of CP. Responses truly varied. Our own “Positivity Princess” Linds said riding a bike.

Heather likes to avoid standing and mingling and eating or drinking at the same time.
Blemi tries avoiding situations where she doesn't know if there will be parking off the street. Plus scenarios in people's homes where she doesn't know if they have railings.

Both Heather and Blemi offered different answers. Heather said she avoids situations involving standing and mingling and eating or drinking simultaneously. Surely a trying balancing act when factoring in CP!

Concurrently Blemi raised issues surrounding parking and handrails. Specifically she said she avoids situations where she doesn’t know if there will be parking off of the street. The same avoidance applies to entering homes where she doesn’t know if people have railings.

Avoiding all the above situations remains understandable. However, there stands no reason to avoid answering the week’s extend-the-conversation question. Again, this week’s question asks “Do you find cold medicine really affects your spasticity?”

This week's extend-the-conversation question asks "Do you find cold medicine really affects your spasticity?"

Reply below to answer. Then set a calendar reminder for 8pm ET every Wednesday. That way you may join the conversation LIVE. Share your own experiences. Enjoy the community. Simply click here at 8pm ET and include “#CPChatNow” in your tweets.

Until then remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 10/16/2019

#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- 10-09-2019

Curiosity roared throughout the live cerebral palsy Twitter chat #CPChatNow Wednesday, October 9th, 2019. Here to tell you more, I am co-host Zachary Fenell. Let the recapping begin!

Early in the evening I posed a question. Originally I saw the question asked in a cerebral palsy related Facebook group I belong to.

Zachary shares a question he first saw a mother ask in a cerebral palsy Facebook group.

Within said Facebook group, a mother wanted input on what others consider the best ramp material. Both chat regular Seth and my co-host Devin Axtman deemed metal the best material for a personal ramp. Information I relayed back to that Facebook group.

Elsewhere in our chat Devin raised a thought provoking question.

#CPChatNow participants discuss whether they find World CP Day helpful.

Saturday, October 5th, 2019 marked World CP Day 2019. The recently passed date left Devin asking if we find such days helpful or if all the awareness (World CP Day, CP Awareness Month, National CP Awareness Day) blends in together. Long-time chat regular Blemi said she thinks the occasion is just another way to spread “inspirational porn.” Devin agreed, saying a lot of World CP Day comes across as cliché or just checking a box. I added my thoughts too.

Zachary gives his input on cerebral palsy awareness.

Personally, I believe there remains no such thing as too much awareness. However, I indicated awareness should possess tangible substance. Otherwise you simply end up with awareness as a buzzword. Devin agreed, hitting what I consider an essential point. “Make it (awareness) something people can do something about.”

What do you think? Answer as the week’s extend-the-conversation question, “Do you find things like World CP Day helpful?” Reply in the “Comments” section.

Another intriguing topic arose October 9th when I asked participants about their exercise habits.

Jeni and Zachary discuss their exercise habits.

Specifically I wondered how often people exercised. Jeni showed impressive frequency, explaining she exercises five or six days a week, about 90 minutes at a time. Her exercise regimen has led her to experience less spasms. Others merely find living life with cerebral palsy enough of a workout.

Blemi explains why she doesn't exercise.

Blemi explained she never exercises because she lacks the energy. Daily life and working full-time proves her workout.

Besides a physical workout, exercise that mind by remembering to answer the week’s extend-the-conversation question. “Do you find things like World CP Day helpful?”

Respond below! Then double check your calendar. Make sure you write in #CPChatNow, every Wednesday on Twitter starting at 8pm ET. Until then, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks "Do you find things like World CP Day helpful?"
Comment below and answer!

#CPChatNow Recap- 9/25/2019

This past week in #CPChatNow was jumping as always. Members discussed things like the perceptions of social media, the perceptions of parents with disabilities and CP, and what the news and society at large gets wrong about CP. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow co-host, Zachary Fenell, wrote a blog post, defending social media while talking about the positive impact of #CPChatNow.

zach writes a blog defending social media and talks about what a positive impact #CPChatNow has had. I share that people like to focus on the negative

Next, the topic of the chat largely turned to society’s perceptions of Cerebral Palsy and what the members wished was different. Zach asked about a common topic in the disability community, news coverage of disability and more specifically CP.

zach asks what people would like to see change about news stories regarding cp. i shared treating us as normal with boring lives. zach shared he sees many stories where he asks why is this news? linds tweeted about focusing on the abilities they do have. zach expressed frustration that the focus is on the cannot

Next, Zach tweeted that he wished news stories focused on what the individual with CP thinks rather than bystanders. Zach feels more people blogging and sharing their experiences will be beneficial.

zach tweets he wishes news stories focus more on individuals with CP rather than bystanders

Zach and I talked about how more direct quotes from the person would be more authentic.

zach feels more direct quotes could diffuse stigmas and an authentic portrayal. i bemoaned that many stories have one perfunctory quote. zach tweets he wonders why even if people use a communication device.

Finally, talk turned to an article Zach shared about an Irish mum with CP using a wheelchair:

zach asked if parents could relate to the article. veronica said no because she was mild and she had no issues caring for her children. dave smith tweets stories like this allow people to escape, tweets about her support and fan base.

I pointed out how it was interesting that the barriers she experienced were attitudinal barriers from the healthcare professionals:

I tweeted about the attitudinal barriers from the healthcare professionals. Zach points out that barriers form attitudes are a lot more difficult to navigate than physical barriers

This brings us to our Extend-The-Conversation Question: What are some attitudinal barriers you have experienced in your life?

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

-Devin

#CPChatNow Recap- 09-18-2019

A recent news story helped inspire conversation during the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, September 18th, 2019. Here with the full report, I am chat co-host Zachary Fenell. By “full report” I mean your weekly recap. Let the recapping begin!

Early in the night a familiar face resurfaced.

Linds makes her return to #CPChatNow.

After a short hiatus Linds returned to #CPChatNow! Over the years within our community Linds picked up the nickname “Positivity Princess.” Hearing her health upsets now remain stable provided positive vibes.

The optimism continued flowing when I asked a question.

Zachary asks #CPChatNow to fill in the blank for "Cerebral palsy has made me..."
Zachary and Grace discuss CP making them dedicated, stubborn, and determined.

I asked participants to fill in the blank and answer “Cerebral palsy has made me…” Co-host Devin Axtman said CP has made him mentally tough. Meanwhile I replied to my own question, saying CP has made me dedicated. Grace offered a similar reply, crediting cerebral palsy for making her stubborn and determined.

What about you? Answer as the week’s extend-the-conversation question, “Cerebral palsy has made me (Blank).” Leave your answer in the “Comment” section.

Another question I asked Wednesday, September 18th, I based off a recent news story I shared “Arvada boy walks thanks to school resource officer.”

#CPChatNow participants share a time someone went above and beyond for them.

Basically the article highlights a school resource officer who went above and beyond to help a student with cerebral palsy. Therefore I asked participants to share a time someone went above and beyond for them. Devin could not just name one occasion. Instead he expressed how fortunate he feels having an amazing support system.

Blemi highlighted a particular pillar in her support system, her mom. Keeping to the mother-daughter theme, Veronica answered saying the time her daughter got her friends to wear green for CP awareness.

Speaking of awareness, thank you Tinu for helping to spread awareness about #CPChatNow and other disability related Twitter chats.

Tinu tweets out about disability related Twitter chats, including #CPChatNow!

Our chat happens every Wednesday. I hope to tweet you soon. Before then though, don’t forget to answer the extend-the-conversation question. “Cerebral palsy has made me (Blank).”

This week's extend-the-conversation question is a fill in the blank question. "Cerebral palsy has made me (blank)."
Answer in the “Comments.”

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

-Zachary

#CPChatNow Recap- 9/11/2019

This past week in #CPChatNow was animated as always. Members talked about things like getting a bad night’s sleep, their routine in the morning, and the age old debate of audio books versus physical books.

Members first talked about something that plagues everyone from time to time, a bad night’s sleep and how long it takes them to recover:

zach asks how long members need to recover from a bad night's sleep. chris said it takes forever, blemi said 2 or 3 days and she needs 7 hours of sleep with 8 or 9 being better, zach said he is best with 8 hours of sleep and i tweeted i feel it the next day with 6.5-7 hours being optimal

Next, Zach asked members if they have to wake up earlier to get ready because of CP:

zach asked if members have to wake up early in the morning to get ready due to disability, I said no, but it does take me 5 minutes to put my shoes and orthotics on, zach said he saves time by keeping his shoes tied

I also recommended a book that I am listening to, Strangers Assume My Girlfriend Is My Nurse. Zach and I discussed what I do when I listen to audiobooks:

I recommend the book Strangers Assume My Girlfriend is My Nurse by Shane Burcaw. Zach asked if I multi-task while listening and I shared I do it on my train commute

Next, members engaged in the new school age old debate, physical books or audio books. Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Hannah and Dave Smith also weighed in on the audiobook debate with Hannah tweeting that she likes physical books because she can physically turn the pages and Dave tweeting it depends on the thing he is reading:

The conversation about audio books versus paper books continued. Hannah said she likes physical books, but they are a chore with her vision and she often gets distracted in audio books.Dave smith said he likes physical books for favorite authors and ebooks for reading and textbooks.

This brings us to our Extend-The-Conversation Question. I will use Zach’s question and put my own twist on it: Do you have to adjust your routine due to disability? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

The Extend-The-Conversation Question: Do you have to adjust your routine due to disability? with Extend-The-Conversation in green above the question, the multicolored #CPChatNow logo, a black alarm clock showing 10:10

Please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow

-Devin

#CPChatNow Recap- 09-04-2019

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- 8-28-2019

This past week in #CPChatNow was jumping as always. Members talked about topics like submitting their first manuscript, snapping their fingers, and the bane of many people with CP’s existence, shoes. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to recognize #CPChatNow’s resident scientist, Timmy. Timmy is starting his PhD program and submitted his first 1st author manuscript. Good luck this year Timmy!

Zach and Timmy tweet about Timmy's first 1st author manuscript. A paper that condenses his master's thesis.

Next, Zach asked if members are able to snap their fingers, something that is difficult for many people with CP.

Blemi tweets she is able to snap her fingers

Talk then turned to whether members could do things like the Vulcan Salute, sing, and play an instrument.

I tweet I cannot snap or do the vulcan salute. Grace tweeted she cannot do the salute or whistle a melody while she can sing. Zach tweets he cannot sing, snap, or whistle. Grace tweets she has practice but can't play an instrument. Zach tweets practice is important to doing something well.

Next, talk turned to how long member’s shoes last them. Keens and Docs were popular durable shoes. Many members expressed that shoes did not last them long.

Zach asked how long it took member's shoes to wear down. Chris tweeted it depends on the construction, but she has luck with keens. Blemi mentions docs as well. Heather tweets her shoes wear down at different times.
Grace tweets her shoes can wear down in weeks or month, but it can be a year. She tweets her left shoe can wear out faster.

Finally, Zach mentioned a CP life hack he used at a recent wedding, wearing black tennis shoes rather than dress shoes.

zach tweets that he wears black tennis shoes instead of dress shoes as a CP life hack. Blemi tweets zach is lucky he is a guy. Zach tweets he would be a mess in heels

Zach’s tweet about tennis shoes inspires our Extend-The-Conversation Question: What are your CP life hacks? Share your answers in the comments!

Extend-the-conversation question graphic. An easy button with what are your CP life hacks? and the white #CPChatNow logo

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

-Devin

#CPChatNow Recap- 08-21-2019

Wednesdays equal appointment tweeting, at least for participants in the live cerebral palsy Twitter chat #CPChatNow. To tell you more, I am chat co-host Zachary Fenell. In my opinion the best way to demonstrate the appointment tweeting concept remains delivering you your weekly recap.

Since everyone begins gathering at 8pm ET, you can expect almost immediate responses to your tweets. Such quick response time helps to build a bond between those who contribute to the dialogue. For example, take a look at how others responded to a humorous story my co-host Devin Axtman shared.

Members in #CPChatNow bond over similar experiences.

Devin brought up a Lyft driver who recognized Devin’s cerebral palsy. The driver’s familiarity with CP stemmed from a family member having the “Palsy.” The tale gave me flashbacks to college when a peer saw my movements and asked a similar question. Like long-time chat regular Blemi observed, “People who know. Know.”

Another attribute which makes #CPChatNow appointment tweeting involves the life updates. Each week chat regulars share the happenings in their lives. On Wednesday, August 21st, 2019 Shira shared an awesome development.

Shira shares an exciting life update with #CPChatNow.

Shira recently learned every week her college brings in therapy dogs for de-stressing. Devin mentioned the college he works for does the same during finals, an especially stressful time! Unfortunately, stress knows no bounds. Whether school or life, you can easily become stressed. Hence the importance to find an outlet to relieve your anxiety. With that said, answer as the week’s extend-the-conversation question “How do you relieve stress?”

Leave your reply in the “Comments” section. Then afterwards make sure to add #CPChatNow to your weekly calendar. The Twitter chat takes place every Wednesday, beginning at 8pm ET. Include the hashtag in your tweets and join the conversation! 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, "How do you relieve stress?"
Leave your answer in the “Comments” section below!