The week before Christmas was an eventful week as always in #CPChatNow. Members talked about returning to their former clinic, the character of Tiny Tim, their grandparents, and more. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.
The chat started with #CPChatNow Co-Host, Jorge, checking in from a vacation with his family:
Zach also talked about recently seeing A Christmas Carol and being disappointed with the Tiny Tim character:
Wum Gin talked about going back to her old clinic and memories of her gait analysis. We shared memories of the pain from the markers for the gait analysis being removed from our legs:
With the holidays, talk turned to family, and specifically grandparents. Blemi started the conversation by talking about her 95-year-old grandfather who has been a huge influence in her life and how he met her grandmother in a World War II internment camp:
Finally, Zach also discussed a memorable moment where he scooped ice cream for his grandparents. Zach shared his ability to perform tasks is often overlooked:
This brings us to our extend-the-conversation question: What do you wish others knew about your strengths while living with CP?
Wednesday, December 13th, 2017 remained an active evening for the live weekly cerebral palsy Twitter chat #CPChatNow. Organizing all the activity into one easy to follow recap stands my charge. For those who do not know I am co-host Zachary Fenell.
Interest from community members peaked when I announced our next focus chat.
On Wednesday, December 27th, 2017 Your Level Fitness’ Daryl Perry will join #CPChatNow to lead a chat about “setting good New Year resolutions.” While a personal trainer will head up the discussion, resolutions do not need to relate to only physical goals. A fact I emphasized in an arguably too serious tweet.
Continuing a recent running joke in our #CPChatNow community, regular Rachel asked to include cake in the upcoming “Setting Good New Year Resolutions” focus chat. Replying seriously, I noted while Daryl works as a personal trainer the focus chat can extend beyond fitness based resolutions. Daryl also possesses a small business background.
Keeping to a serious tone, my co-host Devin called himself “the King of Not Sticking with Resolutions.”
Looking to encourage my co-host, I noted many people share this issue. Setting unmanageable resolutions I speculated causes the lacking commitment. Daryl chimed in, recommending working backwards from whatever resolution you set. Determine weekly and daily goals you can evaluate and adjust. Expect more insights like that Wednesday, December 27th, 2017!
Re-focusing back to Wednesday, December 13th however, Devin raised a topic not likely to win any popularity contests within the CP community.
The abovementioned topic “not likely to win any popularity contests” proved no other than snow! I joked I manage with snow due to “poor life choices.” Hannah Pike admitted to hibernating as much as possible. Meanwhile Rachel explained the snow does not bother her. Instead she objects to the ice and Raynaud’s syndrome.
Your turn now! Answer for the week’s extend-the-conversation question “How do you manage in the snow with your cerebral palsy?” Leave your response in the “Comments” section.
Continuing forward Rachel raised a subject which appealed to left-handers.
Rachel noted she recently made her computer mouse left-handed. Hannah, also a lefty, expressed interest in doing the same. Personally, the entire conversation fascinated me.
As another southpaw, the idea amazed me. Perhaps you can further trigger my amazement with your answer to the week’s extend-the-conversation question.
“How do you manage in the snow with your cerebral palsy?”
This past week in #CPChatNow was especially lively as we celebrated #CPChatNow’s 4th birthday! We decided to do a focus chat with various questions focusing on changes in member’s lives, questions about #CPChatNow, and a discussion about #CPChatNow’s future. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this special recap.
The first question focused on what has changed in members’ lives in the last four years. Members shared many things, but it was interesting that many members had common changes:
The next question was about how members had heard about #CPChatNow. Members shared various things such as discovering it on their timeline to seeing CP celebrities like John Quinn tweet about it:
Zach also shared the story of the creation of #CPChatNow. A collaboration between John Quinn and @HandicapThis.
The next question related to specific questions or conversations that have stuck out to members. Hannah shared the long running #CPChatNow joke of the story when someone asked if her CP was caused by getting ran over by a train:
Jen tweeted about the focus chat with @The_CP_Swagger and Hunter Gandee who has made national news by carrying his brother with CP on his back to raise awareness:
Zach chimed in with the exercise chat led by Erin while I said the dating or accessible gaming ones:
Members also mentioned liking that the conversations in #CPChatNow tend to happen organically and do not feel forced:
Finally, the last question in the Focus Chat was regarding who members would like to see be a guest on a future focus chat. Members were consistent in requesting Micah Fowler of Speechless fame.
Now this brings us to our next Extend-The-Conversation question and I will use #CPChatNow’s fourth birthday as inspiration. What has changed for you in the past four years and what would you like to see in the next four?
Assorted conversations occurred Wednesday, November 29th, 2017 during the cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell, here to summarize the dialogue into your weekly recap. Tone throughout the night varied from empathetic and humorous to more serious.
Both co-host Devin and I empathized with Rachel when she shared she almost fell earlier in the day. Rachel described the situation tweeting in-part, “don’t even have a sense of what happened… my muscles just decided to go on strike.”
Her description made me recall the second fall I endured amidst my marathon Sunday, October 8th, 2017. Meanwhile Devin noted experiencing similar scenarios. For him he ends up going backwards. Devin and I additionally each answered a question raised by participant Seth.
Curiosity sparked Seth to ask if anyone knows a republican with CP. I mentioned seeing social media posts containing republican ideals published by others with CP. However, I added not asking about party affiliation. Close-minded attitudes make political discourse difficult to enjoy in my opinion. Devin agreed, expressing indifference towards the two main parties. Furthermore Devin voiced frustration regarding another subject.
Retweeting a news story emerging too often, Devin vocalized disgust. The piece centers around an adult woman with a disability who some “never seen” and her parents. The father killed the mom and daughter prior to taking his own life. Actions certain people in society reacted to with sympathy. A reaction tiring to Devin.
Similarly, I found the news piece sickening. I theorized such instances happen due to the misconception people with disabilities cannot live valuable lives. #CPChatNow regular Shira Sadiky chimed in, saying these unfortunate attitudes motivate her. She wants to prove those people wrong!
Susanne viewed the scenario partially a communication issue. She sees multiple people with disabilities posting online unfamiliar with available resources. Within her comments Susanne hit upon key advice. “You never know unless you ask.”
Building off the article I tweeted, I asked “What advice would you give your younger self?” Long-time chat regular Blemiwould advise her younger self to “Keep on keeping on. Life does get better.”
Seth additionally encouraged with his wisdom. “Living on your own isn’t as scary as you think.” Your turn! Ponder your life lessons and answer for the week’s extend-the-conversation question, “What advice would you give your younger self?”
Answer the week’s extend-the-conversation question with a comment in the “Comments” section.
Leave a comment in the “Comments” section below to respond. No reason the conversation must stop after Wednesday. Keep the dialogue going!
Plus consider following our Facebook fan page. The page shares recent cerebral palsy related stories and will keep you updated on our latest announcements.
The chat before Thanksgiving was very eventful as members talked about moving their impacted side(s), difficulty with insurance companies, inaccessible houses during the holidays, and more. This is #CPChatNow Co-Host, Devin Axtman, and I will be taking you along for this week’s recap.
We begin this week’s recap with Rachel and I discussing having to purposely focus more on moving our impacted side(s):
Next, Chris and Zach discussed the difficulties of dealing with insurance companies and the added frustration that comes with knowing the proposed treatment would save money in the long run:
Finally, much of the talk in the chat was surrounding member’s holiday plans. Talk soon turned to accessibility issues members had while visiting family and strategies they had to deal with them:
Paul and Zach also discussed family member’s houses with stairs and sliding on their butts to go down them:
This brings to our Extend-The-Conversation Question: What are some out of the box solutions you have used in inaccessible situations? Please share your answers in the comments and join us every Wednesday at 8 Eastern at #CPChatNow on Twitter.
Participants in the live cerebral palsy Twitter chat #CPChatNow enjoyed thought provoking conversation Wednesday, November 15th, 2017. I am co-host Zachary Fenell, here to capture the riveting dialogue and allow you to further contemplate the various topics discussed. My co-host Devin Axtman provoked thought early as Blemi and I discussed wait times at the doctor.
While Blemi and I joked about untimely doctors, Devin supplied helpful advice and perspective. He plans at least a 30-minute wait into his schedule when he sees the doctor. When waits grow irritatingly long, Devin reminds himself not everyone possesses access to such specialists. What a great mindset!
Dreams emerged another popular topic during the chat November 15th. Seth wondered why so many guys with CP watch wrestling. In my response I suggested a possible “sub-conscious urge to be as muscular and strong.” That idea led Linds to transition the topic to dreams.
Linds asked if anyone else ends up in their dreams either able-bodied or possessing super strength. Both Seth and I never experienced those abilities in our dreams, but what about you? Answer for the week’s extend-the-conversation question, “Have you ever been completely able-bodied in your dreams?” Leave your response in the “Comments” section!
Moving on Shira Sadiky joined in the chat expressing her dislike for the term “special needs.” People within our community held passionate opinions regarding the term.
Devin theorized the term “special needs” remains people’s efforts to make disability “cute.” Shira agreed, suggesting the cuter phrasing enable those without a disability to feel better when thinking about us with disabilities. Talking out the subject left Shira frustrated, asking “They don’t even experience it so why do they get to decide?”
Empathizing Devin referenced the disability rights movement rally cry “Nothing about us without us.” The fact people make decisions regarding disabilities without talking to those with disabilities sickens Shira. I helped place context to the situation explaining how only decades ago many thought death offers a better fate than living with a disability. Said point hit home with Blemi.
Blemi recalled as a little girl telling her father she wished she was never born. Remembering the comment saddened Blemi. Shira and I however understood the difficulty and why little girl Blemi would say what she said.
Meanwhile Devin analyzed the potential reasoning behind the “Better dead than living with a disability” mentality.
Assumptions people with disabilities cannot do many tasks Devin believes powers the “better dead than living with a disability” attitude. Any incompetent assumptions get destroyed by looking at our #CPChatNow recap archives. Our community showcases thriving possibilities and will continue doing so. That leads to a couple community specific discussions. First, Devin announced our November 2017 Google Hangout date.
Hopefully you join us for our video chat via Google Hangouts Thursday, November 30th, 2017. We do not share the link publicly for privacy reasons. So if you wish to join us, message the #CPChatNow Facebook fan page.
Secondly, #CPChatNow also stands ready to start planning a new shirt sale. Initial steps involves collecting design ideas. Time to speak up on what you want to see in the next #CPChatNow gear.
Think like Shira and let us co-hosts Devin, Jorge Otezia, and I know your design ideas for the next #CPChatNow shirt. Before sharing your shirt ideas with us though, remember the extend-the-conversation question awaiting your response.
“Have you ever been completely able-bodied in your dreams?”
Respond below in the “Comments.” If yes, please give some details.
This past week’s #CPChatNow Twitter chat was eventful as always. Members discussed fixing accessibility problems at work, the helpfulness of blogging, and the independence that something like a parking tag can bring.
A continual theme on #CPChatNow has been working with employers on addressing accessibility related issues. Zach relayed a story of working with his employer to address a folding mat over a carpet:
Next, Lindsey and Zach discussed the importance of blogging in their lives. Lindsey and Zach discussed how blogging is a way to express their thoughts to the world:
Zach and Lindsey also discussed the difficulty of caring what others think:
Next, talked turned to the mixed feelings that using an aid such as a wheelchair, cane, or accessible parking placard can bring:
Zach and Veronica discussed the assistance that having an accessible parking placard can provide when navigating the giant falling hazards that are known as parking lots:
This brings us to our Extend-The-Conversation question: What tools related to your CP give you mixed feelings?
Another Wednesday passed Wednesday, November 1st, 2017 and with Wednesday comes another cerebral palsy Twitter chat. Obviously I, co-host Zachary Fenell, am referencing our beloved #CPChatNow. For nearly four years our chat has given us in the cerebral palsy community reason to anticipate Hump Day.
The very first #CPChatNow happened Tuesday, December 3rd, 2013. I along with fellow authors John W. Quinn (Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy) and Handicap This‘ Tim Wambach (How We Roll) joined forces to co-host the special chat. At the time we did not plan to make the chat a weekly deal. However, YOUR feedback quickly turned #CPChatNow into a weekly occurrence.
Truthfully, I felt honored putting my name alongside Tim and John’s as #CPChatNow co-founders. Both individuals I came to know about and respect through my set “cerebral palsy” Google Alerts. Connecting personally with them each started on Twitter. An opportunity no longer available with one.
John decided to leave Twitter due to increased negativity on the platform. As I explained to regular Shira Sadiky the news saddened me because others will not enjoy the same opportunity I enjoyed to connect with John. Nevertheless those around in the early days will surely recall John preaching not to dwell on problems but find solutions. That led me to ask a question.
Long-time regular Jen looked forward to learning how others stay positive and tune out negative forces. I offered up my tips. Ignore people trolling. Avoid Twitter during highly politicized events. Also hide aggressive and insulting users from your feed so you do not see their tweets.
Your turn now! Answer for the week’s extend-the-conversation question “How do you stay positive and tune out negative forces?”
Respond in the “Comments” section below! Then remember to join us tonight on Twitter at 8pm ET! Twitter recently expanded character limits to 280 characters. That should allow our conversations to thrive more!
#CPChatNow had a lively chat as always this past Wednesday. Members talked about changing job duties, football teams letting teens with CP score, and whether intended good deeds are necessary and appreciated. I am your Co-Host, Devin Axtman, and I will be taking you along on the ride for this week’s recap. Buckle up!
We’ll start this recap with Chris discussing her feelings surrounding changing job duties and the disability accommodation process at work:
Next, talk turned to a recent story out of New Jersey where a 7th grader with CP scored a touchdown when the other team kneeled. Zach and Timmy both bemoaned the other team’s lack of effort:
However, Zach and I also brought up Reese’s feelings in the matter:
Finally, talk turned to helpful good deeds that people think they are doing related to your CP, but that are actually patronizing and harmful. Zach started the conversation by recalling a story about someone repeatedly asking if he was alright while walking:
Zach and I discussed people pushing me in my wheelchair without me asking, something that happens frequently:
Omens discussed frustration regarding being escorted to the school office due to dizziness and feeling her wishes were not totally respected.
This brings us to our Extend-The-Conversation Question: What are some not helpful things people do to help with your CP? Please share your answers in the comments.
#CPChatNow remained abuzz Wednesday, October 18th, 2017 when retired clinical neuroscientist and author Dr. Karen Pape joined the Twitter chat. I am co-host Zachary Fenell, who regrettably forgot to ask the doctor about a cure for tardiness. Thankfully her insights prove timeless. So let us move forward with a recap.
The night’s theme involved Dr. Pape’s findings that a brain can recover, but habit often hides said fact. Thus no matter your age, you stand “never too late to change in life.” A concept Dr. Pape details in her Winnipeg Tedx Talk.
Ironically, you could argue Dr. Pape embodied the focus chat’s title through participating in #CPChatNow. She shared she previously never partook in a Twitter chat.
Hannah Pike and many others expressed their gratitude towards Dr. Pape joining us. Soon the conversation spurred off into multiple directions. Participants, both new to #CPChatNow and our regulars, asked the doctor their questions. Linds asked Dr. Pape to give an overview regarding what the doctor does.
Happy to oblige, Dr. Pape summarized her bio and credentials as follows.
Compressing her impressive resume down to fit in one tweet Dr. Pape mentioned she retired from her clinical neuroscientist work and wrote a book, The Boy Who Could Run but Not Walk. Additionally Dr. Pape expressed her motivation, to make people more optimistic.
Hopefully throughout the night participants found optimism within Dr. Pape’s responses. She certainly provided practical feedback. For instance, take an issue raised while Hannah and I discussed Dr. Pape’s Tedx Talk.
Those who keep up with me personally know I am actively walking 5ks and even recently a full marathon! Yet Dr. Pape’s Tedx Talk left me wondering if I could do more. Perhaps I could actually run! Dr. Pape advised a couple options to get started.
Dr. Pape suggested I walk backwards along a wall or try running on a treadmill. She also encouraged Hannah to get dancing. Your turn to add to the conversation! Answer for the extend-the-conversation question, “What is something you always wanted to do?”
Leave your response in the “Comments” section. Maybe your response will stimulate further dialogue. Just like how Dr. Pape’s answers led to follow-up questions and further chatter!
Dr. Pape’s reply to another question regarding vision left regular Susanne Kate Brass wondering if a connection existed between neurological injury and eye issues.
In responding to Susanne’s question Dr. Pape made an often overlooked point. Health care in general involves seeing an eye doctor. Susanne explained her question, noting many people with CP she knows deal with visual impairment. I chimed in, mentioning a statistic I read saying at least three-fourths in the cerebral palsy population face vision issues. A statistic I came across researching a blog post, “Kindle Fire Accessibility for Reading Books.” Dr. Pape challenged my statistic, emphasizing the general health aspect to vision.
Around 9:30pm Dr. Pape needed to bid adieu. After thanking Dr. Pape for her time and insights, participants enjoyed some free chat time. Susanne raised an important topic worth highlighting here.
While missing in the above screen shot, Susanne explained a #MeToo post encourages sexual assault victims to speak out and tell their stories. A topic unfortunately linked to our community since people with disabilities can end up more vulnerable to such assaults.
Although the subject seemed important to incorporate into the week’s recap, let us not end on such a heavy note. Instead remember to answer the extend-the-conversation question.
“What is something you always wanted to do?”
Your response should entail a task currently difficult to you due to your cerebral palsy. Leave those below.
#CPChatNow 