2018

Posted on March 11, 2018 by devinaxtman

This week in #CPChatNow was a rambling week as always. This is #CPChatNow co-host, Devin Axtman, taking you along on this week’s recap.

Rachel started us on a great note by continuing her tradition of greeting #CPChatNow participants with a greeting containing a characteristic of CP:

Rachel greeting her Hypertonic boos. I expressed appreciation for her greetings

I also want to encourage folks to check out the Paralympic coverage. The Paralympics are the Olympics for athletes with disabilities and there is some awesome action going on:

Devin passed along the Paralympic schedule

Talk then turned to dreams. Shira and Zach discussed the appearance, or lack thereof, of CP in their dreams. Zach and Shira talked about dreams. Zach said he has CP in his dreams while Shira does not.

Then, talk turned to pain and CP. We talked about the difference between CP related pain and normal, everyday pain.

I talked about asking my doctor if pain was CP or normal pain. Zach and I agreed normal pain is pain unrelated to CP like pain after a workout versus CP pain like pain from weather impacts surrounding CP

Finally, talk turned to the all-too-familiar 1-10 pain scale and how CP can cause confusion of how to rate someone’s pain.

Zach and Shira talks about how CP changes our perception of pain.

Everyone agreed that CP causes us to live in the 1-3 pain range

Rachel and Zach agree they live in the 1-3 range of pain

Shira then asked whether someone is in pain if they really don’t notice it:

Shira and Zach continued talking about pain. Shira asked if someone is in pain if they don't notice it

ETC- How Does CP Impact Your Perception of Pain This brings us to our extend-the-conversation question: How does CP impact your perception of pain?

Please share your answers in the comments and join us every Wednesday at 8 PM ET on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 02-28-2018

Posted on March 6, 2018 by zacharyfenell

Participants in our weekly cerebral palsy Twitter chat #CPChatNow discussed many topics Wednesday, February 28th, 2018. I am co-host Zachary Fenell, taking on the challenge to recap the lively discussion. Before recapping the many subjects visited, I wish to emphasize a reminder given during the chat.

Currently we at #CPChatNow remain in shirt sale mode, with a shirt featuring a lime green #CPChatNow logo and a line underneath, also in lime green, reading “Established December 2013.” You can pick up the shirt in either navy, forest green, and/or sapphire. However, the sale ENDS Wednesday, March 7th, 2018 when the clock strikes midnight in the eastern time zone. So order today!

Proceeds from the sale will go to the non-profit foundation Keep On Keeping On (KOKO). KOKO assists those with severe disabilities through helping families fund physical therapy and other medical expenses. Help us help them make a difference by either purchasing a shirt or making a monetary donation.

Truly, the shirt sale concludes at a fitting time. After all, March marks Cerebral Palsy Awareness Month. Said topic left our community buzzing Wednesday, February 28th.

Rachel asked what people planned to do for National Cerebral Palsy Awareness Month, quipping that her leg and hand “have been making me all too aware of CP as of late.” I replied I work to raise CP awareness year round through my blog, memoir Off Balanced, and public speaking. Nonetheless I plan to become extra focused in March.

Meanwhile my co-host Devin shared some skepticism. He wants to see meaningful activity oppose to”mindless awareness with no real impact.” Those comments lead us to this week’s extend-the-conversation question. “How do you feel about Cerebral Palsy Awareness Month?” Answer in the “Comments” section.

The CP Awareness Month dialogue eventually transitioned, based off Rachel’s hand and leg quip.

Participant Heather DeYoe noted her birthday occurs during CP Awareness Month. She also empathized with the hand issues Rachel mentioned. Although Heather also indicated feeling relief from such issues after recent surgery. That left Wum Gin wondering the operation Heather underwent.

Elsewhere I discussed with longtime regular Linds a matter Linds blogged about recently, weird dreams.

Amidst the aforementioned post “My Weird Dream Lately…#1” Linds recalled a dream where she proved free from cerebral palsy. I found the fact Linds didn’t have CP in her dream fascinating and pondered what a dream expert might deem the significance. Offering her non-expert opinion, Linds suggested the fact could relate to not knowing she had something called CP until fourth grade.

Her speculation caused other participants to reflect back on growing up with CP. A direction evolving into chatter centering around math class!

$#CPChatNow participants think back to their performances in math class.$ Rachel, Devin, and I went back and forth recalling our differing experiences in math class. Rachel described her math class as “sketchy.” I touted my good performance in the subject, at least until I reached pre-calculus. Devin possessed a relatively opposite experience. Geometry presenting the only math class leaving him to struggle. Rachel added many with CP find difficulty with math.

Perchance the math keeps you hesitant towards purchasing a “#CPChatNow Established December 2013” shirt, I will crunch the numbers for you. Each shirt costs $24 and then another $4.99 in shipping, bringing the total to $28.99. The sale ends Wednesday, March 7th, 2018 at midnight ET, meaning upon this recap’s initial publication you hold less than 30 hours to order. Proceeds will go directly to the non-profit foundation Keep On Keeping On.

With that one final plug done, one task lingers. For you to answer the extend-the-conversation question! Again, this week’s question asks “How do you feel about Cerebral Palsy Awareness Month?” Respond in the “Comments” below.

Until next time!

-Zachary

#CPChatNow Recap- 2-21-2018

Posted on February 27, 2018 by devinaxtman

Last Wednesday was a bustling week in #CPChatNow as always. Members discussed Drunk History portraying the fight for disability rights and a discussion on members’ number one life priorities. This is #CPChatNow Co-Host, Devin Axtman, taking you along for this week’s recap.

First, we are very excited to announce #CPChatNow’s 2nd t-shirt sale benefiting the Keep On Keeping On Foundation. Get your #CPChatNow Community Established December 2013 shirt now!

Tweet announcing #CPChatNow's t shirt sale

Next, Rachel and I talked about Drunk History portraying the fight by the disability community to get the Rehabilitation Act 504 standards codified into law. Past #CPChatNow participant, Ajani “AJ” Murray, was an actor in the video! (Warning: the link contains adult language)

Rachel and I discussing our mutual love for Drunk History's segment on the section 504 regulations

Next, members talked about their number one priority with Zach, myself, and Heather chiming in:

Zach asks about member's number 1 priorities. He said his is taking care of himself physically, I said being happy, and Heather mentioned dreading going to work after a few days out and wondering what her coworkers will think. Zach asks Heather about she handles this

Heather and Zach both tweeted about how the only thing that should matter for a boss is job performance:

Heather tweeted about how she normally only worries about what she can control. Zach tweeted that the only thing that should matter from a boss is opinions on job performance

Finally, Shira and Zach discussed Shira’s number 1 priority, survival:

Shira responded her number one priority is survival. Zach asked a follow up question about what makes it easiest for her to survive

Shira tweeted that she survives by leaning on her support system. Zach agreed this is critical.

Shira tweeted that leaning on others and dreams and determination helps. Zach and Shira agreed that

This brings us to our extend-the-conversation question. I will add to Zach’s great question: What is your number 1 priority in life and how does CP factor into your priority (if at all)?

Be sure to join us every Wednesday at 8 PM Eastern on Twitter at #CPChatNow

Tweet you later!

-Devin

A white background with Extend-The-Conversation in black and What is your number 1 priority in life and how does CP factor into your priority (if at all)? on the bottom. The multicolored #CPChatNow logo is in the bottom lefthand corner. There is a pointer finger with a red ball with a #1 in white

#CPChatNow Recap- 02-14-2018

Posted on February 20, 2018 by zacharyfenell

February 2018 coincidentally saw Valentine’s Day and the weekly cerebral palsy Twitter chat #CPChatNow fall on the same day. I am co-host Zachary Fenell, ready to recap the dialogue from February 14th. Participants’ attitudes towards Valentine’s Day emerged early in the chat.

Participants Jen and Rachel‘s responses to my Valentine’s Day greeting showed a disapproval for the holiday. Jen wished a “Happy Single made up holiday.” Meanwhile Rachel pulled a Scrooge, saying “Bah humbug!”

Chatter remained Valentine’s Day related via participants sharing their experiences with online dating. Unfortunately, the tales skewed more negative than positive. Disclosing your disability proving a key topic. However, I will avoid specifics since the recap rules deem “Tweets focus on sensitive life events, such as relationship matters” not recap appropriate.

Eventually discourse moved beyond a love theme. I announced the date for our February 2018 Google Hangout.

Google Hangouts offer the chance for us to talk face to face and share stories harder to tell with Twitter’s character limits. Distributing the Hangout link happens privately to ensure a safe environment. Please contact either my co-hosts Jorge Otezia, Devin Axtman, or myself by Twitter or through the #CPChatNow Facebook fan page to inquire about joining the Hangout.

Mentioning Devin, he added input to a question I asked.

Devin answered my question, “How often do you fall?” He said he falls maybe once a month. I explained the reason I asked, feedback I received on a recent Youtube video discussing falls.

The user commented he never falls because he catches himself. Devin and I both found the ability to catch yourself all the time impressive. Long-time community member Jocelyn also added to the falling talk.

Jocelyn possessed a more precise answer to the question “How often do you fall?” She noted tracking how often she falls and trips. Within the information she logs she includes the situation’s circumstances. Probably very helpful data!

Your turn now. Answer for the week’s extend-the-conversation question, “How often do you fall?” Estimate if you do not know the exact amount. Leave your answer by commenting below.

Until next time,

Zachary

#CPChatNow Recap- 2-7-2018

Posted on February 13, 2018 by devinaxtman

This past week in #CPChatNow was buzzing as always. Members discussed positive and negative things that had happened in the past week, a community pulling together to build an accessible playground, and a tattoo they would get to represent their CP. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow started with Co-host, Zach Fenell, asking members what positive things had happened for them this week. I shared getting back into the swing of things at the gym and Hannah reported texting friends and getting a new shirt in the mail:

Zach asked members what positive things had happened. I shared getting back to the gym and Hannah stated she recently got a new shirt

Zach shared the exciting (and positive!) news that he is starting to write a new book on his journey to becoming a marathoner:

Zach announcing he is starting a book on his journey to becoming a marathoner

Next, talk turned to a community raising money to build an accessible playground. Zach shared that he hoped the other kids asked the kids using wheelchairs’ permission first before helping them:

Zach and Devin discussing an accessible playground and the necessity of asking permission first

Zach and I agreed that inclusive playgrounds should be the standard:

Zach and I discussing that inclusive playgrounds should be the standard

Next, talk turned to tattoos members would get to represent cerebral palsy. Members replied with various words and themes:

Members discussing what tattoos they would get to represent their CP

Zach referenced Southpark from Seth's tweet, Blemi tweeted Shackles, and Zach tweeted a tank

This brings us to our extend-the-conversation question: What tattoo would you get to represent your experience with CP? Please share you answers in the comments!

Tweet you later!

-Devin

Extend-The-Conversation is in black, a green butterfly with cerebral palsy written on a green ribbon, and the Extend-The-Conversation question: What tattoo would you get to represent your experience with CP? along with the multi-colored #CPChatNow logo in the bottom left hand corner

#CPChatNow Recap- 01-31-2018

Posted on February 6, 2018 by zacharyfenell

An abbreviated #CPChatNow Twitter chat happened Wednesday, January 31st, 2018. I am co-host Zachary Fenell here to provide you the details via your weekly recap. Around our usual start time 8pm ET, my co-host Devin announced he would miss the chat.

Trouble since I found myself with Internet connection problems. Without seeing Devin’s tweet I reached out to longtime regular Hannah Pike to give participants an update.

Thankfully a change in status occurred a little before 9pm ET. Equipped with a re-established Internet connection, I entered the #CPChatNow thread. Soon the dialogue started flowing like any other Wednesday from the past four-plus years.

Issues recently experienced by longtime regular Blemi led to conversation about ableism.

While Blemi gave an update on her parking situation, Hannah mentioned ableist tendencies. I replied, noting too many people do not realize their ableist behavior. As the chatter continued I theorized a big problem involves the tendency to grow defensive when discussing discrimination. People take words personally oppose to staying open-minded.

Later in the chat participants rallied together again to supply support to another. Regular Shira Sadiky looked to our community for advice on transitioning to college.

I asked Shira what her roommate situation will end up like. Personally I always paid the double rate for a room in college although I lived in a single. Devin supplied greater perspective, explaining the difference between doubles, singles, and medical singles.

Towards the chat’s end I raised a question asked to me the day prior.

The question “What’s your rock?” a middle school teacher asked me following my presentation at a school. Your rock meaning what keeps you moving forward during hard times. Devin, who ended up making the chat at the end after all, said friends and family. That answer proved common.

Blemi called her significant other her rock. Meanwhile Jen said her mother gives her strength during tough times. Your turn! Answer for the week’s extend-the-conversation question,

“What is your rock? What keeps you going during tough times?”

Respond in the “Comments” section below. Then join us Wednesday evening at 8pm ET for our weekly Twitter chat!

Tweet you soon,

-Zachary

#CPChatNow Recap- 1-24-2018

Posted on January 30, 2018 by devinaxtman

This past week in #CPChatNow members took a page from the Baseball Hall of Fame and inducted members into a mythical Cerebral Palsy Hall of Fame. Members also talked about parenting strategies for kids with CP and positive things that have happened this week. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap. All aboard!

First, we’ll start the recap on a positive note. Hannah asked about a positive thing that has happened this week. Zach talked about a speaking engagement and Blemi talked about trying to find something positive everyday:

Hannah asked about positive this week.

Next, talk turned to a video with Zach Anner, a comedian with CP, where Zach offers his parenting advice for parents of children with CP.

Devin talked about the necessity of parents watching their kids struggle. Zach mentioned that it is probably hard for parents to see kids struggle and a balance required after Jen brought up struggles putting on her socks

Seth, Rachel, and Zach all agreed with the video’s message that it is important to treat children with CP like kids without CP:

Seth, Rachel, and Hannah agree with the video's assertion that kids with CP should be treated like other kids

Zach then took inspiration from the Baseball Hall of Fame’s announcement and asked members who they would like to see in a CP Hall of Fame. Members mentioned various people including Geri Jewell, Christopher Nolan, and Maysoon Zayid as well as things like #CPChatNow.

Hannah and Zach talking about #CPChatNow going in the CP Hall of Fame

Zach and Devin talking about their choices for the CP Hall of Fame

Members continue to discuss who they would like to see in the CP Hall of Fame

This brings us to our Extend-The-Conversation question: What tips do you have for parents of children with CP?

Extend-The-Conversation is at top in black text. The word tip is in black in the middle with a lightbulb over the letter I. What tips do you have for parents of children with disabilities? is below the word and tip with the multi-color #CPChatNow logo in the bottom left hand corner

Please answer in the comments and join us on Twitter at #CPChatNow every Wednesday at 8pm ET.

#CPChatNow Recap- 01-17-2018

Posted on January 23, 2018 by zacharyfenell

Members in the #CPChatNow community turned to our Twitter chat Wednesday, January 17th, 2018 seemingly looking for an escape from their busy lives. I am co-host Zachary Fenell, here to tell you more. There seems no better way to do that than your weekly recap!

A theme involving busyness quickly emerged. Co-host Jorge Otezia dropped in, updating us on his semester ahead at University of Mary Washington.

Between working 30 hours a week and a full course load Jorge warns he will end up missing in action a lot. In a separate conversation my other co-host Devin also appeared occupied with a full schedule.

Responding to Devin, I pointed out how busyness can tempt someone to feel overwhelmed. Personally I avoid this by remembering busyness proves a privilege. Changing your mindset to say “I get to” oppose to “I have to” makes a huge difference! Otherwise you risk becoming stressed. Fittingly stress surfaced as a topic thanks to #CPChatNow regular Rachel.

Rachel asked if anybody feels like their CP makes dealing with stress harder compared to our able-bodied counterparts. Among the replies to Rachel, Devin offered an interesting theory. He theorized since we spend more energy moving around, we also exert more energy when stressed.

To prevent dwelling on the above problem, let us borrow the approach #CPChatNow co-founder John W. Quinn shared so many times. John always encouraged we focus on solutions. So answer as the week’s extend-the-conversation question, “What tricks do you use to help handle your stress?” Leave your stress relief tip via a comment in the “Comments” section.

Before commenting though, shall we continue with the recap? Conversation eventually transitioned to a couple recent news stories. The first caught my attention earlier in the week.

The story “Family of boy, 13, who cannot walk or talk because of cerebral palsy left in tears after laughing drunks call him a ‘cabbage.‘” noted how the mother felt humiliated by the experience. Reading her comments saddened me because in my opinion the offending adults should feel embarrassed. Not the family! Devin shared enduring a similar situation and initially feeling bad. I deducted feeling bad stands a human instinct, but we could benefit training ourselves to rethink our emotional response.

Beyond his own memories Devin tweeted about another news story featuring bullying behavior.

Devin’s share “Professor put on leave after allegedly mocking U of G student with ‘severe anxiety’” detailed a professor who allegedly acted unsavory towards a student with severe anxiety. Rachel found the article unsurprising. Meanwhile I contemplated contributing the bullying behavior to the professor possessing his own unresolved issues.

Anyways, enough negative talk! Time to find solutions in life. We cannot control other people, but we can control how we react in such stressful situations. Perhaps you enjoy a great stress relief tip. Share by answering the week’s extend-the-conversation question.

“What tricks do you use to help handle your stress?”

Respond below. Until next time remember, don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 1-10-2017

Posted on January 16, 2018 by devinaxtman

This past week in #CPChatNow was eventful as always. Members discussed the benefits of warmer weather, frustrations about obtaining a new doctor, and the lift that an unexpected gift from a friend can offer. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

This week opened up with Rachel and Zach tweeting their gratitude that the weather is warming up and joking they now feel like they are 70 instead of 80:

Zach and Rachel tweeting their gratitude about warmer weather and that the warmer weather makes they feel 70 instead of the normal 80

Zach next shared a common concern that many people with disabilities face, changing insurance and finding a new doctor:

Zach tweeting about anxiety regarding a change in insurance and a new doctor

Next, Hamda talked about difficulties with adjusting to using a wheelchair for long periods. Hannah and I talked with her about our decision process on when to use our chairs. I talked about how using my chair depends on the distance I will be walking and Hannah tweeted about how it depends on the terrain of the place she is walking:

Hamda, Hannah, and I talking about our decision process for using our wheelchairs

Finally, Hannah talked about a friend that helped keep her company during doctor’s appointments. Talk then turned to the all-too-common phrase, “Let me know if you need anything!” and if people really mean it:

Hannah talking about gratitude of a friend keeping her company. Zach and I talked about the meaningless nature of the phrase "Let me know if you need anything"

This brings us to our extend-The-conversation question: What is an example of a friend doing a helpful thing you did not expect?

Be sure to join us each Wednesday on Twitter at 8 Eastern time for more fun!

Tweet you later!

-Devin
A sign with multiple words pointing in different directions in front of a blue sky. Advice, tips, and assistance point to the left. Help, support, and guidance point to the right. Below the sign there is the white #CPChatNow logo in white with the Extend-The-Conversation Question What is an example of a friend doing a helpful thing that you did not expect? in white text against a red background

#CPChatNow Recap- 01-03-2018

Posted on January 9, 2018 by zacharyfenell

A New Year for the cerebral palsy Twitter chat #CPChatNow commenced Wednesday, January 3rd, 2018. I am co-host Zachary Fenell, here to happily recap our first 2018 chat. Unfortunately my counterpart Devin missed the evening’s festivities due to feeling under the weather. However, I proved not the only co-host around to kick off the year.

Still enjoying some rare downtime co-host Jorge Oteiza added much to the night’s dialogue. He updated us on his life and more. That more includes a fun fact about what #CPChatNow translates to in Spanish, “parálisis cerebral charlar ahora.”

Over the past year a strong interest in Spanish culture emerged amidst #CPChatNow thanks to Jorge’s travels and participant Rachel becoming a trusted chat regular. Rachel knows Spanish culture from time she spent living in the country. She even enlightened us January 3rd, 2018 with a New Year Eve tradition practiced in Spain.

Responding to my question about New Year Eve traditions, Rachel mentioned in Spain people eat 12 grapes for each stroke after midnight. She explained each grape represents a good month. I wondered if those who possess difficulty eating, can instead sip grape juice 12 times.

Your turn now! Answer as the week’s extend-the-conversation question, “Do you have any special New Year Eve traditions?” Traditions do not need to involve cultural heritage. Rather your tradition may merely entail a gathering with friends and/or family. Let us know by leaving your New Year Eve tradition in the “Comments” section.

Moving forth with the recap, throughout the night participants bonded over mutually shared CP related frustrations. For example, issues snow causes.

After I mentioned noticing issues with the curb cut at my work, long-time regular Blemi revealed a far worse scenario. She noted city workers clearing snow only to dump the snow in handicap parking spots. Not cool!

Additional frustrations discussed revolved around the video game Guitar Hero.

Long-time regular Jen asked if anyone played Guitar Hero. I recalled playing the game in my college years. Admittedly, given my fine motor skills I found the game too challenging outside the easiest difficulty setting. An issue which also resonated with Jen!

Whether video games, snowy obstacles, or something completely different, you will discover empathy from those who truly understand CP by participating in #CPChatNow. The Twitter chat occurs every Wednesday, starting at 8pm ET. Join us. Plus do not forget to answer the week’s extend-the-conversation question.

“Do you have any special New Year Eve traditions?”

Respond below via a comment.

Until next time!

-Zachary

#CPChatNow

Online community for those with cerebral palsy!

Category Archives: Weekly Recaps

#CPChatNow Recap- 3/7/2018

#CPChatNow Recap- 02-28-2018

#CPChatNow Recap- 2-21-2018

#CPChatNow Recap- 02-14-2018

#CPChatNow Recap- 2-7-2018

#CPChatNow Recap- 01-31-2018

#CPChatNow Recap- 1-24-2018

#CPChatNow Recap- 01-17-2018

#CPChatNow Recap- 1-10-2017

#CPChatNow Recap- 01-03-2018