#CPChatNow Recap- 10-31-2018

Posted on November 6, 2018 by devinaxtman

This past week’s #CPChatNow occured on Halloween and as you might guess, there was a lot of talk about Halloween and how it related to CP. Members talked about costumes, trudging through the snow, and going up stairs. Also, I burned my finger. This is #CPChatNow Co-Host, Devin Axtman, and I’m taking you along for the ride on this week’s recap.

First, co-host Zachary Fenell tweeted about a cool Beetlejuice costume that incorporated a wheelchair. Well done!

Zach tweeted about a costume incorporating a mobility aid. The image is the image of a kid's wheelchair being pushed by a parents and wearing a Beetlejuice costume with 2 characters sitting beside him

I shared my story of a burned finger due to an oven mishap and Zach and Hannah talked about difficulties with pot holders:

I talked about burning my hand while cooking and Zach and Hannah tweeted about loathing pot holders

Next, talk turned to Halloween and Zach’s question of the most difficult part about Halloween with CP.

Jen answered Zach’s question by stating it was difficult to get to houses that had stairs.

Jen answered Zach's difficult question with getting to houses with stairs

I talked about the difficulty of putting a costume on and Zach mentioned the difficulty of putting on face paint:

Zach and I tweet about the difficulty of putting on costumes. Zach mentions the difficulty of face paint with fine motor skills

Blemi then talked about the difficulty of having to trudge up and down the stairs in the snow:

Blemi said going up and down stairs in snow was difficult and she relied on her brother to get candy

This brings us to our Extend-The-Conversation Question: Halloween is part of participating in your community. What improvements do you wish for that would make it easier to participate in your community?

Extend-The-Conversation Graphic- What improvements do you wish for that would make it easier to participate in your community? on the bottom along with various people holding COMMUNITY in multi-colored letters with the multi-colored #CPChatNow logo in the upper left hand corner

Please share your answers in the comments and join us tomorrow night at 8 Eastern time on Twitter.

#CPChatNow Recap- 10-24-2018

Posted on October 30, 2018 by zacharyfenell

Your weekly cerebral palsy Twitter chat #CPChatNow started out on a despondent note Wednesday, October 24th, 2018. I am co-host Zachary Fenell here to tell you more, the best way I know how. Recap time!

Long-time regular Jen noticed I seemed a bit down at the chat’s beginning. I admitted to enduring a long day, although not necessarily a bad one. However, my spirits remained dampened by news WWE superstar Roman Reigns announced two days earlier. He revealed his ongoing battle against leukemia. I lost an aunt to leukemia and thus I am familiar with the difficult challenges the cancer presents.

Launching off the discussion between Jen and myself, I asked a question.

I asked participants if a certain celebrity death or health scare had a deep impact on them. Seth mentioned Robin Williams. Meanwhile my co-host Devin said Prince’s death hit him hard because Devin grew up listening to Prince.

To keep the conversation going while also transitioning to a more upbeat mood, allow me to ask as the week’s extend-the-conversation question, “How do you turn bad news into a positive?” Leave your reply in the “Comments” section.

Spirits uplifted during the Twitter chat October 24th when members began discussing the most recent Speechless episode “I-N– INTO THE W-O– WOODS.”

Devin loved the episode so much, he called “I-N– INTO THE W-O– WOODS” “my favorite episode in a long time. Maybe ever.” Seth liked JJ possessing a confidante beyond Kenneth. Additionally Seth expressed interest seeing JJ on the computer being independent.

Personally I am interested in viewing your answer to the week’s extend-the-conversation question. Again, the question asks “How do you turn bad news into a positive?” Comment below to respond. Next plan to join us on Twitter every Wednesday, starting at 8pm ET.

Until then, remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 10-17-2018

Posted on October 23, 2018 by devinaxtman

This past week’s #CPChatNow Twitter chat was lively as always. Members talked about their latest accomplishments, the newest season of Speechless, a runner with CP being signed to a pro contract by Nike, and changes in the weather. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

Timmy shared his latest research that he presented at a conference. Great work Timmy!

Timmy tweeted about presenting his latest research at a conference. There is an image of Timmy presenting at a conference.

Next, members talked about the ongoing third season of Speechless on ABC.

Zach tweeted about episode 3 of Speechless having nothing to do with disabilities. I tweeted about liking the 2nd episode. We had mixed feelings about "The wrong ones are non verbal joke"

Jen and Zach talked about the miserable weather in Texas and Cleveland:

Zach and Jen talking about cold, rain, and hail in Texas and Cleveland

Jen and Zach also tweeted about their hatred for severe weather and tornado sirens:

Jen tweeted about she gets nervous about tornadoes and tornado warnings

Finally, Zach tweeted about Justin Gallegos, the runner with CP who got a professional running contract with Nike. Please check out the video in this tweet. Please note that Justin has asked to have the phrase “suffers from CP” changed to “lives with CP.” We couldn’t agree more Justin. Run on!

Zach tweets about Justin Gallegos' contract with Nike and that he loves that he is just an athlete to Nike

This brings us to our Extend-The-Conversation Question: What are other types of representation you feel Cerebral Palsy or disability needs? Share your answer in the comments!

A green background with Extend-The-Conversation at the top and What are other types of representation you feel Cerebral Palsy or disability needs? at the bottom in yellow. The white #CPChatNow logo is at the bottom left

Tweet you later!

-Devin

#CPChatNow Recap 10-10-2018

Posted on October 16, 2018 by zacharyfenell

Wednesday nights continue to feel like a destination for those who belong to the cerebral palsy community CPChatNow and Wednesday October 10th, 2018 proved no different! I am proud co-host Zachary Fenell, standing in for my co-host Devin Axtman. Usually Devin and I alternate weeks recapping our weekly Twitter chat #CPChatNow. However as Devin later explained, elements beyond his control caused him to miss the October 10th chat.

Although down a co-host, the conversation pushed forward. The prior Saturday (October 6th) marked World Cerebral Palsy Day. I asked if anyone did anything to commemorate the occasion.

Long-time #CPChatNow regular Jen did nothing special to commemorate World CP Day. I then admitted I forgot about World CP Day until the evening when I saw a post from Jen on Facebook. Sounds horrible considering my moniker “The CP Vigilante!” Yet my mind remained pre-occupied with thoughts related to my marathon the next day.

At least I possessed good company in forgetting! Heather DeYoe also forgot. She too maintained a good reason why, Thanksgiving dinner with the family!

Interestingly enough our chat October 10th coincided alongside another relevant world day initiative, World Mental Health Day. A perfect opportunity to talk mental health!

To kick off the mental health discussion I asked how others care for their mental health. Jen mentioned watching TV, listening to music, and taking anxiety medicine. I also find music helpful in maintaining good mental health. Plus I named physical activity, saying the physicality brings me great stress relief. Similarly Grace referenced physical activity amidst her answer, mentioning yoga.

Your turn now to keep the conversation going! Answer as the week’s extend-the-conversation question, “How do you care for your mental health?” Reply in the “Comments” section.

Elsewhere during the night I announced our next Google Hangout date.

Mark your calendars if you plan to attend. To help ensure privacy, the Hangout link does not go out publicly. Contact the CPChatNow Facebook page by DM to get added to the invite list. Before you go to send your message, remember to answer the week’s extend-the-conversation question.

“How do you care for your mental health?”

Leave your reply below.

Until next time, remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 10-03-2018

Posted on October 10, 2018 by zacharyfenell

With another Wednesday flying by, so too came a new #CPChatNow, your live weekly cerebral palsy Twitter chat. Flying actually proved a main discussion point Wednesday, October 3rd, 2018. I am co-host Zachary Fenell here to tell you more via your weekly recap. Prepare for take off!

Long-time regular Hannah Pike locked coordinates onto the flying topic by asking a question.

Hannah asked the community to share any flying advice. I suggested giving yourself plenty of time to get to your gate. Then I followed up, interested in knowing what mobility devices Hannah plans to bring along. When she mentioned bringing her manual wheelchair, I suggested she listened to Handicap This’ podcast episode discussing traveling in a wheelchair.

Additionally my co-host Devin Axtman offered his firsthand airport experiences.

Like me, Devin recommended giving yourself more time than you think you need. He also advised checking your wheelchair at the gate, labeling your chair, taking the seat cushion with you, and avoiding revolving doors. A fellow long-time regular Blemi added her own suggestion.

Blemi encouraged Hannah to pre-board when they call anyone who requires more time or extra assistance. Hannah noted she usually struggles to accept such help, but plans to this time around. Blemi empathized, saying she use to resist as well. Devin meanwhile said he uses all the perks, including one nobody else seemed to know existed!

Devin noted you can get assistance getting your luggage off the carousel by saying at the gate you will need help. Welcoming information to Blemi, who previously asked random people to assist her! A move in hindsight she deemed “not the smartest move on my part.” Hannah admitted she probably would’ve done the same without Devin’s insights. Devin credited his wisdom to learning the hard way.

Memories resurfaced while Devin detailed how he learned the hard way. The story sounded familiar to both Hannah and me. Remembering Devin’s bad airport experience triggered a realization. Our community will turn FIVE YEARS OLD come December! Looking to reminisce, I posed a question.

I asked participants to recall any specific fond #CPChatNow memories. Rather than naming specifics, Shira recalled how #CPChatNow lessened her feeling alone. Personally, my mind went to a particular train of thought.

Over the years the train joke, based off a story Hannah told, continues chugging along. Do not derail the conversation. Keep the dialogue going by answering for the week’s extend-the-conversation question, “Do you have specific fond memories of #CPChatNow?”

Comment below to reply. Afterwards come create new memories by joining #CPChatNow every Wednesday on Twitter. The fun starts boarding at 8pm ET!

Until next time, remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 9-26-2018

Posted on October 2, 2018 by devinaxtman

This past week in #CPChatNow was busy as always. This is Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

Seth worked with his aide to reset his modem while speaking different languages. Zach shared he could have asked Blake to be a translator:

Seth had his Spanish speaking aide reset his modem. Zach pointed out Blake could be a translator.

On a serious note, Zach shared he is participating in a suicide prevention documentary, discussing his friend’s suicide. You can find more information about the documentary at A Tale of Two Mothers. If you or someone you know needs help, please dial the National Suicide Prevention Hotline which is available 24/7 at 1-800-273-8255:

Zach shared a documentary about his friend's suicide is premiering

Zach asked what part of the day members feel at their physical best. We talked about being night owls that were forced by society to become morning people.

Zach said he feels his best after his first cup of coffee. We both agreed we are night owls that were forced by society to become morning people

Finally, the Survivor premier was last Wednesday. Zach asked about how CP would impact someone’s ability to compete on Survivor:

Zach asked if members could compete on Survivor with CP. I recommended Paralympia Ayden Jent who said he would do it

ETC- Which Reality Show Would You Like to Participate In This brings us to our extend-the-conversation question: Which reality show would you like to participate in?

Please join us each Wednesday on Twitter at #CPChatNow at 8 Eastern!

-Devin

#CPChatNow Recap- 09-19-2018

Posted on September 26, 2018 by zacharyfenell

Various conversation topics came and went Wednesday, September 19th, 2018 during the live cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell, here with the highlights. Early on a recent news story stimulated dialogue.

Personally I found the story “10-year old proves to have ‘no limits’ despite her disability” interesting for multiple reasons. I asked what stands out first to others. Ciaróg noted how reading articles like this act as a reminder that cerebral palsy varies so much. Meanwhile my co-host Devin Axtman felt the story contained an “inspirational porn” vibe and pointed out the negative cognition related to wheelchairs. The latter gave me mixed emotions.

As I explained, Riley’s parents refusing to let the wheelchair inside the house caused me contradictory emotions. Yes, she ended up stronger. However, said approach would not benefit everyone. Though, Devin questioned the apparent strength.

Taking a long-term look at the situation Devin acknowledged not using a wheelchair now may cause damage down the line. He emphasized the importance to knowing limits. Better understanding CP helps to best understand where limitations lay. Instilling such an understanding into able-bodied people’s minds involves finding ways to effectively describe the condition. Another subject which surfaced Wednesday, September 19th!

Originally our beloved “Resilient Wench” Rachel raised the matter, asking about how others describe CP to able-bodied individuals. Ciaróg considers CP “as every movement getting snagged by a web of invisible elastic bands.” I liked the spastic muscles to probably how you might feel if a boa-constrictor constricted around you. Risking crossing the TMI line, Rachel herself compared how her muscles feel to menstrual cramps “but all over and all the time.”

What imagery might you use to describe cerebral palsy? Do tell by answering the week’s extend-the-conversation question. “How would you describe your cerebral palsy?” Leave your reply in the “Comments” section.

Continuing to a less serious matter, participants enjoyed fun discussing what makes them feel old.

Rachel recounting a youngster unable to appreciate a Stevie Nicks reference led to the subject. Then I mentioned the lovely dial-up Internet days, a time multiple participants remembered well. Devin even shared a funny story from his childhood where his dad became stuck at work due to Devin’s dial-up use. Navigating between Internet and phone use certainly proved a challenge during the world wide web’s infant years. A different challenge emerged later within the chat after I asked what others find most challenging while grocery shopping.

Ciaróg named a few challenges. Those included packing and paying quickly, plus carrying bags home. I shared the difficulty I face browsing items on low shelves. Devin also deemed lower shelves difficult. Nevertheless an area I encounter less troubles revolves around memory. Therefore let me remind you to answer the week’s extend-the-conversation question.

“How would you describe your cerebral palsy?”

Respond below!

Until next time, remember. Don’t blend in. Blend out!

-Zachary

Online community for those with cerebral palsy!