#CPChatNow Recap- 6-21-2017

Posted on June 25, 2017 by devinaxtman

This week in #CPChatNow was an eventful week as always. Members discussed many things such as: meeting their heroes, their personal definition of brave, and what the word spaz means to them. This is #CPChatNow Co-Host, Devin Axtman, and I will be taking you along on this week’s ride. Buckle up!

This week started with some exciting news as #CPChatNow regular, Hannah Pike, announced that she has fulfilled a bucket list item by meeting Carrie Underwood:

Hannah Pike meeting Carrie Underwood through a random draw Next, #CPChatNow Co-Host, Blake, also known as Jorge, offered an update on his always busy life:

Blake offering an update on finishing classes, starting a food truck, and working on a campaign

#CPChatNow also is continuing to expand internationally as Carissa Anne joined us from Australia!

Carrie Anne joining us from Australia and asking if anyone is familiar with the NIDS

Talk then turned to Jen describing her dog as a “spaz” and whether people consider that offensive:

Jen asking if describing her dog as a spaz is offensive. Most members agreed that it depends on the context

Next, talk turned to who members would most like to meet. A few members offered some people they would like to meet:

Zach asking who members would like to meet. Dave offered Alton Brown and Charles Eames

Zach and I discussed more people we would like to meet such as a professional baseball player, Walt Disney, or pro wrestling manager, Paul Heyman:

Zach stating he would like to meet an MLB player, I offered Walt Disney, while he offered Paul Heyman Finally, talk shifted to member’s definitions of what it means to be brave. Blemi and Rachel agree with the definition of doing something that scares you because you know you have to:

Zach asking what the word brave means. Blemi and Rachel agrees this is something that people do even though it scares you

Christine and Zach discussed the idea that someone is brave if they take a chance on something:

Zach and Chris agreeing that someone is brave if they take a chance on something

This brings us to our Extend-The-Conversation Question: What does being brave mean to you? Please include your answers in the comments! An orange cat sitting and looking at its shadow which is a lion. Extend-The-Conversation-Question along with What does being brave mean to you? along with #CPChatNow white logo in the upper right hand corner

Also, don’t forget about our June Google Hangout on Thursday, June 29th at 7 PM!

Tweet you later!

Devin

#CPChatNow Recap- 06-14-2017

Posted on June 22, 2017 by zacharyfenell

Wednesday, June 14th, 2017 participants who joined #CPChatNow experienced a stroll down memory lane. I am Zachary Fenell, a proud #CPChatNow co-founder and current chat co-host. Fittingly I receive the pleasure to recap the June 14th, 2017 chat. This should feel like writing a #CPChatNow history lesson!

Before delving into our history though, you might notice a certain someone missing from the highlights. Last week my co-host Blake Henry and I announced Devin Axtman‘s move to permanent co-host. He, Blake, and I will all work together to serve our community. Anyhow, Devin to celebrate his new promotion possessed special plans June 14th.

Now, I am joking around about the reason for Devin’s visit to Disney World. I know he planned the trip months ago. The timing with his #CPChatNow co-host promotion just proved too tempting. I couldn’t resist the “I’m going to Disney!” joke.

Moving along, the previously mentioned stroll down memory lane’s catalyst came when some new faces emerged.

Upon learning Christine Ruiz‘s newbie status, Susanne Kate Jones teased some hazing. Christine’s response indicated she will likely fit right in with our humorous bunch.

Thankfully Christine caught onto the comedic tone behind Susanne’s remarks. Another newcomer surfaced a little past our second hour.

Quickly within the 50 minutes left CerebralPalsySpeaks grew intrigued by our community. Enter the question, “So, who started this lovely hashtag?”

Based off participants’ responses, I am glad CerebralPalsySpeaks asked. After all, every party involved in the origins deserves credit.

Susanne credited Someone Like Me author John W. Quinn as the #CPChatNow originator. Meanwhile Rachel Folly gave said distinction to me. Both remained partially correct. John and I each explained we together with Handicap This founded the hashtag. I offered up the visual evidence, tweeting out the promotional image we used to promote the very first #CPChatNow.

Long-time #CPChatNow regular Hannah Pike remembered seeing the image. She admitted letting shyness keep her away initially. That caused me to joke since the #CPChatNow train design shirt we sold last year extends back to a life experience Hannah once shared with us. The joke surprised Susanne who didn’t know #CPChatNow apparel existed.

In 2016 we at #CPChatNow held two shirt sales using Custom Cat. Proceeds went to Handicap This’ non-profit Keep On Keeping On Foundation. Between the two sales we raised $170 for KOKO. If interested in us relaunching the shirt sale, tell us!

Also why not contribute to the #CPChatNow history lesson? Answer for the week’s extend-the-conversation question, “How did you learn about #CPChatNow?” Respond by commenting below!

Until next time.

-Zachary

#CPChatNow Recap- 6-7-2017

Posted on June 9, 2017 by devinaxtman

This week was an eventful week as always in #CPChatNow Land. Members discussed a wide range of things from getting new leg braces, to doing ballet as kids, to underrepresentation in the Cerebral Palsy community. This is Devin Axtman taking you along for this week’s ride.

First of all, I am humbled and honored to serve as full time Co-Host/Engineer for #CPChatNow. Blake and Zach will both be staying on as co-hosts and contributing:

Zach announcing I will serve as a co-host

I started the conversation by discussing how I am in the process of getting new leg braces. Christine and I bonded over our mutual hatred of the casting saw:

Me discussing getting new leg braces and Christine discussing her hatred of the casting saw

Next, Susanne talked about how she did ballet for 15 years and it helped stretch her calves and ankles. This is a great example of non-traditional methods being therapy for CP:

Susanne talks about how doing ballet for 15 years stretched her calves and ankles.

Talk shifted to public figures with CP and what complications are underrepresented in conversations:

Next, talk turned to issues that people with speech issues, a potential complication of CP, face:

Members shared their issues with difficulties with speech and their history with speech therapy. On a positive note, Susanne shared that her speech issues landed her an audition:

Now, we’ll end the recap on some good news. The person who attacked a man with CP at a gas station was arrested this week. However, Rachel pointed out that there is still work to do.

Finally, our next Google Hangout will be on Thursday, June 29th:

This brings us to our Extend-The-Conversation Question: What are some complications from CP that are underrepresented? Please share your answers in the comments. Extend-The-Conversation graphic: What are some complications from CP that are underrepresented?

#CPChatNow Recap- Aging with Cerebral Palsy Focus Chat

Posted on June 9, 2017 by zacharyfenell

On Wednesday, May 31st, 2017 #CPChatNow presented a much anticipated focus chat about aging with cerebral palsy. Interim co-host Devin Axtman and I (co-host Zachary Fenell) alternated asking the questions you in our community suggested. Questions which triggered vibrant conversation. Some highlights follow below.

Now any credible chat on aging with cerebral palsy requires individuals willing to discuss their personal experiences. Therefore to start the Q & A we asked participants comfortable doing so to share their ages. Majority in the group fell between mid-20s and mid-30s. Although a few elder-statespeople ranging in age from 40 to 55 chimed in too. Meanwhile the youngest participant remains amidst her final year as a teenager.

Once we established our participants’ credibility, we delved into our more substantial questions. Our second question addressed what to expect aging with cerebral palsy and how to handle said expectations.

Rachel expressed concerns related to every day wear and tear to the body, symptoms possibly worsening, and even new symptoms. In my personal response to the question I mentioned lacking resources for adults with cerebral palsy.

Turned out others also related to using older braces. Alena‘s reply particularly revealed an ill-fated perception viewing new orthotics as a “kid thing.” Concentrating more towards items we can control, Maysoon Zayid offered up hope.

Through lifestyle changes like practicing yoga regularly and avoiding animal products, preservatives, dyes, and caffeine Maysoon explained that her CP symptoms lessened. What about you? Your turn to add to the conversation! Answer for the week’s extend-the-conversation question, “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?” Leave your response in the “Comments” section.

Maybe similar to Maysoon, you benefited thanks to yoga. Actually, similar to Maysoon and others considering multiple people praised yoga during our “Aging with Cerebral Palsy” focus chat.

#CPChatNow newcomer Grace Lapointe and a fellow #CPChatNow founding father John W. Quinn alike endorsed practicing yoga. All the praise left another newcomer Christine seeking advice for getting started.

Christine vocalized hesitation in getting started, nervous about toppling over. Participants rallied to encourage Christine. John and Maysoon both disclosed using assistance when first beginning yoga.

Alongside the yoga chatter, our set questions for the evening continued. Question three asked about others’ experiences and tips to make life easier. That led to Maysoon offering up an observation.

Similarly, John advised separating cerebral palsy from emerging health issues.

Next the conversation transitioned to the biggest surprise and frustration to accompany aging.

A couple re-occurring themes appeared when community members named the biggest surprise and frustration accompanying aging. Those themes including dwindling mobility and discomfort when trying to sleep. Ending the night optimistically, John recognized the potential boost ekoskeleton braces could offer the cerebral palsy community in the future.

Hopefully our “Aging with Cerebral Palsy” focus chat recap will give you a boost in dealing with CP in your future. Remember you may keep the conversation going by answering the week’s extend-the-conversation question.

“What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?”

Respond by commenting below. Expect Devin in the next few days with the recap for our June 7th Twitter chat. Until next time!

-Zachary

#CPChatNow Recap- 5-24-2017

Posted on May 30, 2017 by devinaxtman

This week’s #CPChatNow Twitter chat was a meandering chat that reflected the busy nature of our member’s lives. There was even a little bit of Español thrown in! I am #CPChatNow Interim Co-Host, Devin Axtman, and I will be taking you along on this week’s recap. All aboard!

This week’s chat took on numerous topics, but a well discussed topic was member’s feelings about the impact of therapy in their life. Rachel shared a funny antidote that doing dishes was therapy for her after Blemi shared she was exhausted from doing dishes:

Rachel states doing the dishes was occupational therapy for her after Blemi suggests she was exhausted from them

#CPChatNow regular, Jessica, also shared why she felt the common belief that Physical Therapy is simply an extension of personal training is misplaced. She shared this is more the case for adults, while for kids PT is about re-establishing Nuero pathways.

Also, one of #CPChatNow’s founders, John Quinn, stopped by and shared the latest always interesting developments in his life. Seriously, check out his book, Someone Like Me, it is an outstanding description of his life with CP.

John Quinn shared a copy of his book Someone Like Me with an Academy Award winning actress

In some happy news, our #CPChatNow Co-Host now known as Jorge Oteiza, is back from Spain and enjoying some family time, overalls, and a new tattoo.

Picture of Jorge Orteiza with his grandma in overalls

Also, Jorge shared some positives and experiences from his trip to Spain:

Jorge's positives from Spain: knowing the metric system, friends, and an intact phone after dropping it in the train tracks. Rachel advised not doing that in Chicago

Next, this brings us to the announcement of our focus chat on aging with CP. Please join us tomorrow, Wednesday, May 31st at 8 EST.

Zach announcing our focus chat on aging

Finally, I would like to go back to the beginning of our chat for Rachel’s discussion about washing dishes being therapy to our Extend-The-Conversation-Question: What non-traditional forms of therapy have you used?

A picture of waves crashing on the shore with white #CPChatNow logo and the extend-the-question conversation: What non-traditional forms of therapy have you used?

Please join us tomorrow at 8 EST for our focus chat on CP and aging.

Tweet you soon!

-Devin

#CPChatNow Recap- 05-17-2017

Posted on May 24, 2017 by zacharyfenell

Many interesting topics emerged Wednesday, May 17th, 2017 during the weekly cerebral palsy Twitter chat #CPChatNow. Or at least I, co-host Zachary Fenell, found the subjects intriguing. Go ahead and use this recap to draw your own conclusions.

Early on I asked about others’ sleeping habits. Specifically I sought information regarding the positions people sleep in and how many pillows they sleep with.

As I revealed in my back and forth with Blemi, curiosity motivated my question. I wondered if CP played a role in the positions we find comfortable. The various responses helped to provide the data needed to make such an evaluation.

Overall laying on your side with legs bent seemed the most popular sleeping position. Around 8:30pm ET our May focus chat announcement transitioned the conversation to a different matter.

Aging with cerebral palsy proves an in-demand issue. Like the above screenshot shows, participants couldn’t wait until May 31st to start addressing multiple points! We hope you will mark the “Aging with Cerebral Palsy” focus chat in your calendar and join us Wednesday, May 31st.

Concentrating back on our May 17th chat, friendly chatter kept the night progressing. This entailed individuals’ to-read lists. Mentioning a cerebral palsy memoir on my own to-read list caused the dialogue to evolve.

Interim co-host Devin Axtman noted he considers his life “pretty typical” and not really memoir worthy. Other participants expressed similar sentiments. Going a step further, Devin critiqued the disability stories currently out there.

Devin’s thought that disability stories can get repetitive spurred disagreement with #CPChatNow regular Rachel Folly. She supported her opinion with cerebral palsy’s individualistic nature. Devin further explained his critique, detailing what he deems the same story arch. What do you think? Let us know by answering for the week’s extend-the-conversation question, “Do you find disability stories repetitive? Why or why not?”

Leave your reply via a comment in the “Comments” section. Perhaps we will even revisit the question during our May Google Hangout. As Devin reminded us, the video chat takes place on Thursday, May 25th, 2017.

Towards the chat’s end a younger participant Kate initiated discussion asking others about how participants’ parents handled the cerebral palsy diagnosis. Replies demonstrated varying approaches taken.

Thank you all for reading and your interest in #CPChatNow. Hopefully you can make tonight’s chat, beginning as usual at 8pm ET. If you cannot participate this week though, please try participating next week on Wednesday, May 31st for our “Aging with Cerebral Palsy” focus chat. Until later remember to answer the week’s extend-the-conversation question.

“Do you find disability stories repetitive? Why or why not?”

Comment below to respond!

Tweet you soon,

-Zachary

#CPChatNow Recap- 5-10-2017

Posted on May 16, 2017 by devinaxtman

This week’s #CPChatNow Twitter chat was a ride ranging conversation on current events in community member’s lives and topics unique to the disability community. This is your Interim Co-Host, Devin Axtman, and I will be taking you on this week’s recap journey.

#CPChatNow regular, Dave Smith, started the conversation by posting a video about the Alinker, a walk-assisted device. Members unanimously agreed it would be beneficial and preferable to using a walker:

#CPChatNow members Kate and Jocelyn returned and debated the proper pronunciation of Cerebral Palsy along with Rachel:

Kate also sparked much engaging conversation about having mild CP and not feeling like she fits in within the disability community:

Members also spoke of their fondness and desire to learn American Sign Language (ASL):

Finally, #CPChatNow Co-Host, Zachary Fenell, ended the chat on a happy note by announcing that he had recently taken a part time job at the local library:

Also, please join us on MAY 25th for our monthly Google Hangout (tip of the cap to Zach for backing up my errant throw):

Finally, this brings us to our Extend-The-Conversation question: Where are some areas the disability community can improve its inclusion of others? Please share your answer in the comments and be sure to join us on Twitter every Wednesday at 8 Eastern Time.

Online community for those with cerebral palsy!