#CPChatNow Recap- 7-12-2017

Wednesday, July 12th, 2017 saw participants gather for our typical Wednesday night #CPChatNow Twitter chat. Considering context though, you could define “typical” with the word extraordinary. At least that remains my biased opinion as #CPChatNow co-host Zachary Fenell.

The communal atmosphere and ability to learn from one another all while enjoying ourselves makes our Twitter chat standout. Do you want proof the above happens? Keep reading!

Susanne Kate Brasset started getting the dialogue going by asking others about their experiences receiving botox injections. A topic on Susanne’s mind given her next botox treatment loomed.

Zachary answers Susanne's question, sharing he received botox from the ages 12 to 16.I shared I underwent botox treatment between the ages 12 and 16. However, we discontinued because the results did not seem worth the hassle. Co-host Devin Axtman also discussed undergoing botox treatment.

Co-host Devin Axtman remembers undergoing botox treatment in fourth and fifth grade.Devin explained the botox helped him feel a lot looser but to get the injections doctors needed to put him under general anesthesia. While the botox discussion continued, our resident celebrity Maysoon Zayid made time in her busy schedule to stop in and say hello.

Maysoon Zayid takes time out of her hustle to say hello to CPChatNow.A little later on a newcomer joined in, seeking advice regarding a particular issue.

Newcomer Grace asks #CPChatNow about remedying pain caused by temperature changes.In an effort to best answer Graces question I asked follow-up questions. I wound up recommending a product I like to use, ICYHOT.

Rachel Folly cracks a joke after Zachary recommends to Grace a product to help relieve pain.Rachel Folly sought the opportunity to use her “Them’s the rules” line. Comments I explained to Grace represented an inside joke. Not actual rules!

Zachary explains the "them's the rules" comment to be an inside joke.

Through continuing dialogue we learned Grace discovered us thanks to Maysoon’s earlier tweets. Anyways, shall we get serious and re-visit Grace’s question? Answer for the week’s extend-the-conversation question, “How do you handle pain caused by changes in temperatures?” Leave your reply in the “Comments” section.

Other noteworthy points coming out our July 12th, 2017 Twitter chat related to our upcoming monthly events. First co-host Jorge Otezia announced the July 2017 focus chat details.

Co-host Zachary Fenell, author of the cerebral palsy memoir Off Balanced, will lead a discussion on writing a CP related book/memoir on Wednesday, July 26th, 2017.I am very much looking forward to our discussion Wednesday, July 26th. Hopefully the aspiring authors within our group will find the chat beneficial. Additionally, remember the same week, on Thursday, July 27th, 2017 we will hold our monthly Google Hangout video chat. To get added to the invite list contact Devin, Jorge, or myself.

While a big week next week, let us not allow the anticipation to overshadow this week’s chat. The fun begins at 8pm ET! Before then answer the extend-the-conversation question.

This week's extend-the-conversation question asks "How do you handle pain caused by changes in temperatures?"“How do you handle pain caused by changes in temperatures?”

Answer below!

-Zachary

#CPChatNow Recap- 7-5-2017

This past week was a lively week on #CPChatNow as always.  Members discussed finding shoes that fit them, working on a disability pride march, important issues that face the disability community, and invasive questions they have been asked about their CP.  This is #CPChatNow Co-Host, Devin, taking you along for the ride. Enjoy!

This chat started out with some happy news as Hannah noted she found some sandals she can walk in:

Hannah tweets that she found sandals she can walk in and bought both shoes. There is a picture of her foot in a pink sandal. Zach replies that it is the little things in life while Hannah responds she is just happy to find shoes she can walk in

Next, Rachel noted that she is working on translating the Chicago Disability Pride March brochure into Spanish. We love to see positive change at #CPChatNow!

Rachel noting she may be working on translating the Chicago Disability March brochure into Spanish or at least volunteering for the march

Then, talk turned to Gabriella Burman’s question of, “What is the most important issue keeping people with disabilities from living a full and independent life?”  I started out by saying that I felt the most important issue is a society that is not set up for us. Transportation and attitude also came up.

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don’t give someone a chance, do all of the other variables matter?

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don't give someone a chance, do all of the other variables matter?

Finally, talk turned to what is the most invasive question anyone has been asked about their CP.

Zach asks what the most invasive question people have been asked is. Suzanne reports being yelled at an airport for using the accessible stall. I pointed out that I get questions about why I am walking if I use my wheelchair

Hannah “won” the question (although, I don’t know if there are any winners here) by tweeting that she was asked how she used the restroom by herself.

Hannah tweets that she was asking how she uses a public restroom by herself. Zach says that it is better than being patronizing. Hannah tweeted that she just ignored the question

For our Extend-The-Conversation question, I would like to go back to Zach’s tweet about Hannah’s shoes being an example of “the little things” in life.  What are some of the little things you take pleasure in regarding CP?

Be sure to join us every Wednesday at 8 EST on #CPChatNow on Twitter!

Tweet you later!

Devin White text in front of a background of waves crashing onto rocks: What are some of the little things you take pleasure in regarding CP? White #CPChatNow logo below question

#CPChatNow Recap- 06-28-2017

The way other people react to your cerebral palsy proved a popular topic during our June 28th, 2017 #CPChatNow Twitter chat. I am co-host Zachary Fenell. For your reading pleasure I gathered some highlights and compiled them into this recap.

To kick off the night’s dialogue, relative newcomer Christine sought advice.

Christine asks the #CPChatNow community for advice on cleaning low places, like a shower.Our community came through with suggestions to help Christine solve her challenges cleaning in low places. I mentioned I use a stool at work to more comfortably organize bottom shelves at the library. Meanwhile co-host Devin Axtman asked a follow-up question to better understand Christine’s situation.

Devin asks Christine for more details on the challenges she faces cleaning low places.Devin related to Christine’s experiences and recommended grab bars. Emotions soon grabbed hold over the conversation when long-time regular Blemi shared a story from earlier in her day.

Blemi shares a story about a stranger who cried after Blemi told him her CP was a birth defect.Blemi’s story really flabbergasted our community. Devin felt dumbfounded regarding how he might react in said situation.

The story Blemi shares about her interaction with a stranger leaves the CPChatNow community flabbergasted.Reflecting more on the situation, Blemi expressed feeling offended and objectified. Her irritation led to the question why someone thinks you can ask such a personal question in the first place.

Blemi wonders what a person thinks before asking a stranger a personal question like "What's with your leg?"I postulated the other person fails to think prior to asking. Instead the question results courtesy impulsive curiosity. Or, “wondering out loud” as Blemi rephrased.

Perhaps you may relate. Let us know by answering this week’s extend-the-conversation question. “What is the most invasive question a stranger has asked you about your CP?” Reply in the “Comments” section.

Continuing the dialogue discussing others’ reaction to CP co-host Jorge Oteiza (previously Blake Henry), recalled explaining his CP to wondering kids.

Co-host Blake Henry explains his CP to the children he works with by saying all people are different.Jorge tells kids wondering about his CP that everyone is different. In my opinion, a great message to tell kids! Differences often cause self-consciousness. Sometimes to severe degrees where the person does not participate in an activity due to his or her differences.

Personally, I like to think I helped reduce the aforementioned last year with the shirt I designed “Run, Walk, Roll, Limp However You Move, Move!” A point I bring up not to self-promote but rather transition to the news I revealed to #CPChatNow June 28th, 2017.

#CPChatNow participants encourage Zachary after he reveals his intention to complete a full marathon this October.Thank you to everyone who offered me supportive words. Enough rambling about me, though! Remember to answer the week’s extend-the-conversation question.

Answer by commenting "What is the most invasive question a stranger has asked you about your CP?"“What is the most invasive question a stranger has asked you about your CP?” Respond below in the “Comments.”

Tweet you soon.

-Zachary

#CPChatNow Recap- 06-14-2017

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.

Devin shares he will be absent as he prepares to go to Disney World. 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.

Christina joins #CPChatNow for the first time.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.

After #CPChatNow veteran Susanne Kate Jones teased hazing, newbie Christine Ruiz gives a response indicating she should get along with our community. Thankfully Christine caught onto the comedic tone behind Susanne’s remarks. Another newcomer surfaced a little past our second hour.

CerebralPalsySpeaks stumbles into #CPChatNow, fearing to have missed the chat. Quickly within the 50 minutes left CerebralPalsySpeaks grew intrigued by our community. Enter the question, “So, who started this lovely hashtag?”

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

Susanne credits John W. Quinn for starting #CPChatNow.Rachel credits Zachary for starting #CPChatNow but he corrects he co-founded #CPChatNow along with John W. Quinn and Handicap This.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 participant Hannah Pike recalls seeing the original promotional graphic I shared while we all discussed #CPChatNow's history.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!

Answer for the week's extend-the-conversation question "How did you learn about #CPChatNow?"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- 5-24-2017

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

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.

Co-host Zachary Fenell and participant Blemi discuss the positions they sleep in.Blemi tweets a photo of a Contour pillow that she recommends using between your knees.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.

#CPChatNow participants discuss the positions they sleep in at night.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.

Zachary announces on May 31st #CPChatNow will hold a group-led focus chat about aging with cerebral palsy. The announcement sparked early dialogue on the subject.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 #CPChatNow co-host Devin Axtman explains why he would not write a cerebral palsy memoir.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 critiques disability stories, referring to a lot of them as repetitive. 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.

Co-host Devin Axtman reminds #CPChatNow that our May Google Hangout will be Thursday, May 25th.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.

#CPChatNow participants share how their parents handled the cerebral palsy diagnosis.This week's extend-the-conversation question asks "Do you find disability stories repetitive? Why or why not?"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

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.