#CPChatNow Recap- Reflecting Back and Looking Forward Focus Chat

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:

Zach asking what has changed over the past 4 years. I answered with some changes including a master's degree, girlfriend

Blemi discussing a new job and boyfriend when talking about changes. Seth discussing cruises and burying his grandpa

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:

Hannah tweeting that #CPChatNow showed up on her timeline

Me stating that I stumbled on #CPChatNow in a search, but I saw John Quinn tweet it

Zach also shared the story of the creation of #CPChatNow.  A collaboration between John Quinn and @HandicapThis.

Zach sharing story of #CPChatNow's creation

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:

Hannah tweeting the train conversation is her favorite #CPChatNow conversation

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:

Jen tweeting her favorite chat was with CP Swagger

Zach chimed in with the exercise chat led by Erin while I said the dating or accessible gaming ones:

Zach and Devin discussing their favorite conversations

Members also mentioned liking that the conversations in #CPChatNow tend to happen organically and do not feel forced:

Members discussing the joy that CPChatNow conversations tend to happen organically

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.

Jen tweeting that she would like to see Micah Fowler on a future chat

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?

This week's extend-the-conversation questions asks "What has changed for you in the past four years and what would you like to see in the next four?"

Answer in the “Comments” section.

Advertisements

#CPChatNow Recap- Dr. Karen Pape Focus Chat

#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.

Dr. Karen Pape joined #CPChatNow Wednesday, October 18th, 2017 to lead a focus chat about "never too late to change in life."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.

Dr. Karen Pape shares that #CPChatNow is her first 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.

Linds asks Dr. Pape for an overview of the work the doctor does.Happy to oblige, Dr. Pape summarized her bio and credentials as follows.

Dr. Pape sums up her impressive resume in 140 characters or less.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.

Zachary and Hannah discuss Dr. Pape's Tedx Talk, noting activities they want to do. 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 advises Zachary on how to overcome habit and learn to run.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. Karen Pape's response to a question about vision leads Susanne Kate Brass to ask a follow-up question.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.

Dr. Pape responds to Susanne's question whether there stands a connection between brain injury and vision impairment.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.

Dr. Pape challenges the vision/cerebral palsy statistic Zachary brought up.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.

Susanne asks if anyone in #CPChatNow made a #MeToo post.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.

This week's extend-the-conversation question asks "What is something you always wanted to do?"“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.

Until next time,

Zachary

#CPChatNow Recap- Accessible Gaming Focus Chat

Representatives for the 501(c)(3) charity AbleGamers joined the cerebral palsy Twitter chat #CPChatNow Wednesday, August 9th, 2017. We  welcomed guests Steven Spohn (COO) and Craig Kaufman (Program Director) as they led us in a focus chat about accessible gaming. Personally for me, #CPChatNow co-host Zachary Fenell, the evening proved extra neat because I actually went to junior high and high school with Craig. However, I am sure you could care less about that! So let us get to what does interest you, accessible gaming!

An open-ended Q & A stimulated the night’s dialogue. I started off the questioning, asking how Steven and Craig became interested in accessible gaming.

Craig explains what interested him in accessible gaming.

Steven Spohn shares how he became interested in accessible gaming.Craig’s accessible gaming interest grew from helping a customer with a TBI (traumatic brain injury). Meanwhile Steven faced issues firsthand dealing with his disability muscular dystrophy. Discussion quickly transitioned to overcoming barriers gamers with cerebral palsy encounter. Steven recommended a particular controller.

Steven often recommends people with CP use an accessible controller called Axis. Almost immediately after Steven suggested using Axis questions regarding system compatibility surfaced. Steven replied in-part “Almost every controller is usable with other systems. The only exception unfortunately is Nintendo.” Additionally Steven mentioned specific system accessible controllers exist too, naming his personal favorite.

One of Steven's favorite accessible controllers is the one-handed Playstation controller. The different controllers Steven named intrigued community regular Alena Brand. She asked if a website exists where you can compare these different controllers. Steven revealed AbleGamers remains at work creating such a resource. Although they worry people will buy controllers that end up not working. A concern AbleGamers minimizes through a no charge exchange policy.

Taking a step back and reflecting, all the various accessible gaming options demonstrates the great strides in accessibility made by the gaming industry. A truth put into context courtesy participant Seth’s gaming memories.  Seth recalls playing Atari with his feet.Seth recalled sitting in his walker playing Atari using his feet! Now, like Craig pointed out, some game developers address accessibility internally via control schemes.

Craig notes games like Mario Kart and Fonza have some cool accessibility options within the control schemes.Also, Craig advised considering PC games. He noted some games you only need a mouse to play.

Craig notes a lot of PC games only require a mouse to play. Chat regular Susanne Brasset provided a testimonial to Craig’s suggestion, fondly recalling the ease she enjoyed playing Everquest.

Susanne and Craig praise Everquest for ease of play and commitment to the disability community.Overall the entire accessible gaming focus chat highlighted many technologies the disability community can use to make gaming a more accessible experience. Therefore what a better extend-the-conversation question to ask than, “What technology do you use to help make gaming an accessible experience for you?”

Reply by commenting in the “Comments” section. Perchance this recap increased your thirst towards exploring accessible gaming options, take Craig up on his offer to answer any questions.

Craig encourages anyone with questions about accessible gaming to contact him.Make sure to tweet Craig any lingering questions you might possess. Plus while along your accessible gaming journey discovering what works best for you, remember the following words Steven tweeted.

If you remember one tweet from #CPChatNow's accessible gaming focus let it be Steven's tweet "You can play anything you want to, with the right combination of technology and stubborness.Whatever serves as that right combination of technology for you, do tell. Answer the extend-the-conversation question.

This week's extend-the-conversation question asks "What technology do you use to help make gaming an accessible experience for you?"“What technology do you use to help make gaming an accessible experience for you?”

Comment below and share!

Until next time,

-Zachary

#CPChatNow Recap- Writing a Cerebral Palsy Book/Memoir Focus Chat

Writing a cerebral palsy book or memoir remained the subject for #CPChatNow Wednesday, July 26th, 2017. Yours truly, co-host Zachary Fenell, enjoyed the pleasure to lead the focus chat. I prepared seven discussion questions based off my experiences writing and publishing my CP memoir Off Balanced. However I proved not the only author around to chat July 26th.

Author of Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy John W. Quinn offers to add his insights to #CPChatNow's "Writing a Cerebral Palsy Book/Memoir" focus chat.Yes! Fellow #CPChatNow co-founder and author to the cerebral palsy memoir Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy John W. Quinn offered to add his insights to the chat! Fitting since his name came up anyways after I asked the first question.

Zachary asks #CPChatNow participants about what CP books stand out to them.Now I prefaced the question, explaining the importance behind knowing similar books already published. That way you can try emulating the attributes which worked for other authors. In her response to the first question regular Shira Sadiky complimented my memoir, calling Off Balanced “relatable.” I noted I felt the same relation reading Someone Like Me. Co-host Devin Axtman also praised John Quinn‘s work.

Devin Axtman shares Someone Like Me sticks out to him.Meanwhile long-time regular Alena Brand named a trait she enjoys in cerebral palsy themed books.

Alena Brand enjoys disability memoirs that maintain positive outlooks.

Opposed to naming specific titles, Alena mentioned enjoying disability memoirs featuring positive vibes. Other books brought up included Geri Jewell’s I’m Walking as Straight as I Can and Bonner Paddock’s One More Step. Perhaps another title stands out to you. Speak up by answering for the week’s extend-the-conversation question “Do any particular cerebral palsy books stand out to you? Why?” Respond in the “Comments” section.

Continuing on, the night’s second question addressed motive behind writing a book.

Zachary Fenell gets #CPChatNow participants to think like a writer and reflect on why you would write a memoir.

Shira raised two potential motivations. Share your experiences others could relate to and/or learn from others. I resonated with the second, commenting I like reading memoirs from those with more severe cerebral palsy. Remarks Alena made also spoke to the learning theme.

Alena aspires to write a memoir in order to have people understand how she lives.Alena plans to write a book to educate others on how she lives. Yet not everyone possessed author aspirations.

Devin doesn't think his life is different enough to write a book.Devin expressed doubt he lives differently enough to warrant writing a book. I pointed out he could target able-bodied readers to show a disability does not make someone so different. Every story contains value. Sometimes you just need to find the right perspective.

The above holds true with regards to the writing process too. Penning a manuscript can seem intimidating. John supplied another way to view the task.

John Quinn didn't think of himself as writing a book but instead he focused simply on telling stories.John recommended concentrating on telling stories opposed to writing a book. He added practical advice to help enter said mindset.

John suggests not worrying about grammar or anything. Rather "Just write. Edit later."A later question transitioned the conversation from the writing process to the publishing and marketing aspect.

Question five transitioned from the writing process to publishing and marketing, asking "How can a blog help transition you to publishing a book?" Jen postulated bloggers could assist spreading word about your book. Truth based off my time marketing Off Balanced! The dialogue proceeded to discuss marketing specifics. Much I learned reading a certain book.

Zachary recommends aspiring authors read Publishing & Marketing Realities for the Emerging Author by Christine Rose.Seriously, most I know about the publishing process I learned reading Publishing and Marketing Realities for the Emerging Author by Christine Rose. For aspiring authors if you take one tidbit away from this recap, make that read Publishing and Marketing Realities for the Emerging Author.

Book lovers, hopefully you too enjoyed reading the “Writing a Cerebral Palsy Memoir/Book” focus chat recap. Perhaps the chat introduced you to a CP book you didn’t know about previously. Or, maybe you can suggest a book not discussed. Remember the extend-the-conversation question.

Answer in the "Comments" section, "Do any particular cerebral palsy books stand out to you? Why?"“Do any particular cerebral palsy books stand out to you? Why?”

Respond by commenting below!

Talk with you later,

-Zachary

#CPChatNow Recap- Aging with Cerebral Palsy Focus Chat

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.

The second question of #CPChatNow's Aging with Cerebral Palsy focus chat asks about expectations aging and how to deal with these 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.

Co-host Zachary Fenell mentions compared to kids, adults with cerebral palsy possess less resources to help deal with CP.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.

Maysoon Zayid explains lifestyle changes she made in order to help lessen her cerebral palsy symptoms. 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.

Newcomer to #CPChatNow Grace Lapointe also has had positive experience with yoga.John W. Quinn, one of the original #CPChatNow co-hosts, finds yoga helps with balance issues plus back and hip pain.#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 wonders about yoga and expresses concern about toppling over.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.

John W. Quinn and Maysoon Zayid talk about their beginnings with 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.

Maysoon Zayid notes an observation that many individuals with cerebral palsy forget aging impacts everyone.Similarly, John advised separating cerebral palsy from emerging health issues.

John W. Quinn advises to separate cerebral palsy from emerging health issues.Next the conversation transitioned to the biggest surprise and frustration to accompany aging.

Dwindling mobility and discomfort sleeping proved re-occuring answers from #CPChatNow participants when discussing the biggest surprise and frustration caused by 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.

John W. Quinn believes ekoskeleton braces could provide the CP community a boost 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.

Answer in the "Comments" section- What changes to cerebral palsy with regards to aging should we expect and how do you deal with them? “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- A Serious Chat About Comedy

This week brought up one of our best focus chats yet, as #CPChatNow regular, Susanne Kate Jones, led a serious chat about comedy.  I’m your #CPChatNow Interim Co-Host, Devin Axtman, taking you along for the ride. So, what are you waiting for?  Hop aboard and let’s get geauxing!

Susanne first introduced herself by noting her comedy experience:

Susane describing her degrees from LSU

Susanne discussing the comedy classes she has taken

Susanne came up with some outstanding questions.  Her first question asked about people’s favorite comedian and comedy movie or TV show:

Alena also specifically brought up how the ABC show Speechless is her favorite because it highlights disability:

Susanne next asked about the importance of comedy and humor.  Members chimed in with their thoughts:

Susanne next asked if members felt there were any topics that are comedically off limits:

Members chimed in with various different topics they felt were comedically off limits:

Ultimately, we agreed it depends on the situation:

Next, Susanne asked if comedy could be used to teach about disability related issues. Members largely agreed that it can allow others to relate to CP easier.

 

Next, Susanne asked why members thought there were so many successful comics with CP. Members largely agreed that CP gives comics a unique story that comics can tell.  Members also spoke of comedy as a coping mechanism:

Finally, Susanne asked about ways to make comedy more accessible. Members discussed various ways, focusing on physical and digital access.

This brings us to our Extend-The-Conversation Question, “What role does humor or comedy play in your daily life with CP?” Extend the conversation question with #CPChatNow Logo

Please leave your answer in the comments and thanks for reading!

#CPChatNow Recap- “How Computer Science Benefits the CP Community” Focus Chat

Benefits computer science can bring the cerebral palsy community remained our focal point Wednesday, March 1st, 2017. Long-time #CPChatNow participant Alena Brand led us in the chat. I am co-host Zachary Fenell, finally here to recap the evening.

First, I apologize for the delay. Between a power outage and spotty Internet connection getting this recap done proved a challenge. In fact the power outage caused me to miss #CPChatNow Wednesday, March 8th for the first time since September 2014. Therefore I am looking forward to my co-host Devin Axtman‘s upcoming recap.

Anyways, enough self-revolving talk from me! Time to highlight our March 1st, 2017 chat. Oh, the many highlights too! Alena sparked great dialogue with her questions. Before diving into those however, Alena shared her credentials to lead our computer science focus chat.

Alena gives her credentials for leading a computer science orientated focus chat.To begin Alena asked us to name computer technology we use to help overcome cerebral palsy. Speech recognition software ended up a re-occurring answer. Specifically Dragon and Siri received mentions.

#CPChatNow participants share the computer technology they use to help overcome their cerebral palsy.Devin’s answer stood out against the other responses captured in the above screen shot. Although you may not necessarily think about auto correct as a disability related tool, my co-host made a valid point. Auto correct does enable you to type faster by lessening concerns over errors.

Next Alena inquired about if the non-disabled interpret the CP community’s computer technology based needs well.

Alena asks #CPChatNow "Do you feel people who don't have CP do a good job interpreting what sort of computer technology can help the disabled?"Devin responded to the question through a developer’s mindset. Indeed a successful developer understands the needs he or she seeks to meet. Additional dialogue looked at how the question could apply to occupational therapists and other special needs professionals. Sometimes their well-intentions fail to properly meet a person’s needs. Here my advice works well, “Instead of guessing, ask!”

Moving onto question three, Alena asked what improvements we want to see in computer technology which would benefit our daily activities.

Devin wants to see computer technology improve to a point where self-driving cars are both afforable and feasible. As other replies rolled in a desire for self-driving cars emerged a popular one.

In addition to self-driving cars Hannah wants to see afforable standing wheelchairs.Co-host Zachary Fenell and others also express interest in self-driving cars.Besides self-driving cars, Hannah also hopes to see affordable standing wheelchairs become more commonplace. What about you? Do you possess interest in self-driving cars? Do you want to see improvements with standing wheelchairs? Maybe another computer technology intrigues you. Add your input by answering as the extend-the-conversation question, “What computer technology improvements would you like to see that would help with daily activities?” Reply in the “Comments” section.

Going back to self-driving cars for now though, Shira raised a great point about hacking. An issue Alena echoed while bringing up other safety concerns with self-driving cars.

Alena addresses some safety concerns with self-driving cars.Continuing with an eye to the future we closed the night discussing computer technology currently in development, but which could benefit the CP community greatly in the future.

Devin has his eye on the self-tying shoe lace.If those shoes pique your curiosity, below you can watch the video Devin linked to.

This week's extend-the-conversation question asks "What computer technology improvements would you like to see that would help with daily activities?"

Respond to the extend-the-conversation question in the “Comments” section.

Wrapping up remember to answer the extend-the-conversation question.

“What computer technology improvements would you like to see that would help with daily activities?”

Answer by leaving a comment! Until next time.

-Zachary