2018

Posted on July 11, 2018 by devinaxtman

There was a bit of a change to #CPChatNow this week. The chat was moved to Tuesday to accommodate the 4th of July. However, the chat was still busy as members talked about how often they think about CP, burning calories, and doing chores. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Talk started with whether members thought about their CP regularly.

Zach and Chris talked about if CP is constantly on their minds. They both agreed they think about it, but not overtly

Zach and Rachel talked about the impact (or lack-thereof) of CP on burning calories:

Rachel and Zach talked about whether CP impacted their calories burned, particularly when it came to posture

Next, talk turned to chores that are more difficult because of CP. Members quickly agreed that making the bed can be very difficult with CP:

Jeni and Zach talking about the difficulty of making the bed

Finally, talk turned to the difficulty of ironing with CP:

Zach and Wum talked about the difficulty of ironing and folding with CP

Zach asked how often members ironed. Devin and Chris talked about their infrequency of ironing

This brings us to our Extend-The-Conversation Question: What is the most difficult chore for you with CP?

Share your answers in the comments and join us tonight at 8 Eastern!

-Devin

#CPChatNow Recap- 06-27-2018

Posted on July 4, 2018 by zacharyfenell

Within the evening Wednesday, June 27th, 2018 during the live weekly cerebral palsy Twitter chat #CPChatNow an overarching theme emerged. I am co-host Zachary Fenell here to tell you about said theme. The most fitting way to do so appears obvious, via your weekly recap!

Actually, last week’s recap generated early discussion. Specifically, my co-host Devin Axtman sharing the June 20th recap extend-the-conversation question, “What has been your toughest form of disability related adjustment?” Answers varied but all involved issues you encounter growing older.

Long-time regular Blemi’s answer triggered me to make comments about the difficult but vital task involved with making new friends. A task Devin called “an underrated hard part of being an adult.” I noted how major life events like moves and having kids naturally causes friendships to grow distant. To avoid becoming isolated, you need to make new friends. Sentiments fellow tenured #CPChatNow participant Hannah Pike found true.

Another reply to the adjustment question entailed finding available services. Hannah and I meanwhile explored a connected subject, picking a doctor.

We contemplated the various factors important towards deciding what doctor to get treated by. Details like location, bedside manner, knowledge, willingness to listen, and more! Add to the list by answering for the week’s extend-the-conversation question, “What attributes do you look for in a doctor?” Leave your response in the “Comments” section.

Keeping the focus to growing up, I asked a question related to beginning college.

Devin remembered worrying about handling everything. However, eventually he proved himself capable. Bullying also stood out as a concern.

Newcomer to #CPChatNow Martin Wylie indicated he worried bullies might target him in college due to his disability. Sadly he faced such bullying. Yet thankfully Martin added over time he finally made friends.

If you need a friend, consider joining #CPChatnow sometime. We love when new people join us, a fact hopefully evident by how Devin and I greeted Martin.

Typically #CPChatNow happens every Wednesday, going from 8pm to 10pm ET. Please know #CPChatNow will NOT take place tonight. Due to the July 4th holiday, we moved the July 4th chat to yesterday. Devin will provide you that recap soon. Stay tuned for that. Until then, take a moment to answer the extend-the-conversation question.

“What attributes do you look for in a doctor?”

Respond via a comment below.

Until next time, remember. Do not blend in. Blend out!

-Zachary

#CPChatNow Recap- 6-20-2018

Posted on June 26, 2018 by devinaxtman

#CPChatNow was brisk this past week. Members discussed competing as a Paralympic athlete, baby announcements, stubbornness, and the difficulty of trying to convince others to use mobility devices. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we’re starting the recap with some happy news! The creator of #CPChatNow, Tim Wambach, from Handicap This just welcomed a baby girl. Congrats Tim!

Zach announcing Tim welcoming a baby

Picture of Tim with his baby girl

Also, #CPChatNow welcomed a new member in Ayden Jent. Ayden is a Paralympian, two-time World Championship US team member, and Para Pan-Am silver medalist.

Ayden Jent says hi to CPChatNow. He is a 2015 Para Pan Am silver medalist and runs the 100 and 200 meters

Zach and Ayden talk about halfmarathons. Ayden tells Wum he prefers longer distances and has mild CP

Next, talk turned to whether members had talked loved ones into using a mobility device. Zach and Hannah talked about coming to terms with using their respective mobility devices:

Hannah and Zach talking being hesitant to use crutches and walkers. Zach said he was hesitant to use his cane for his marathon

Discussion then turned to mobility aids being tools for independence:

Devin discussed his wheelchair being a tool for independence, but that mindset being a transition. Zach tweeted he wished this thought process could be embedded into stubborn individuals

Hannah and I then talked about how the experiences of CP make adjusting to a mobility device easier:

Devin tweets about how adjusting to a mobility device is different due to having to deal with physical issues that others may not have

This brings us to our extend-the-conversation question: What has been your toughest form of disability related adjustment? Please share your answer in the comments! A sky blue background with a person rolling a boulder up a hill outlined in black. Extend-The-Conversation Question centered in white text at the top. What has been your toughest form of disability related adjustment? in the middle and #CPChatNow logo in bottom left hand corner

#CPChatNow Recap- 06-13-2018

Posted on June 19, 2018 by zacharyfenell

Discussion proved quite active Wednesday, June 13th, 2018 for our live weekly cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell here with some highlights. Cue the screenshot reel!

Early on multiple participants mentioned increasing physical activity. A subject initially raised when regular Folly noted her goal to improve her posture. I shared I too recently completed research, looking to add more variety to my current exercise routines. Meanwhile Chris expressed her interest in attending an upcoming Paralympic sample day hosted by Seattle Adaptive Sports.

Enough movement and you can expect to grow tired. Fittingly that topic also surfaced within the chat June 13th, 2018.

The cerebral palsy community’s tendency to fatigue faster compared to our able-bodied counterparts stood at my mind’s forefront, given a personal increase in activities. Therefore I asked if anyone else could relate and how they handle their frustrations.

Folly offered various solutions including listening to music, counting in your head to distract yourself, and keeping your focus towards your breathing. She additionally named preventive measures, yoga and drinking water.

Simultaneously participant Veronica Hosking interpreted my question differently.

She advised taking tasks slow to avoid fatiguing yourself. I clarified I meant feeling fatigue after finishing a task. What would you suggest? Answer for the week’s extend-the-conversation question, “How do you handle fatigue related frustrations?”

Leave a comment in the “Comments” section to answer. Who knows? Your response could provide the support someone reading needs. Essentially your reply possesses the chance to act as a supportive gesture, similar to a hug. Hugs actually became a concentration amidst the chatter.

Originally Folly brought up hugging, pondering if people with CP need hugs more. I retorted saying the answer varies based off the hugger. Long-time regular Hannah Pike echoed those sentiments. Concurrently others identified a serious issue hugs may create.

Hailey Hughes and my co-host Devin said hugs, particularly side and back hugs, can surprise them. This triggers jumpy behavior. Considering the balance challenges associated alongside CP, falls may result. The aforementioned transitioned the conversation to falling.

Delving into details, Hailey and I chatted back and forth discussing falls. We agreed we become accustomed to our falls. However, add a bonfire or hot liquid to the situation and nerves heightened.

Elsewhere in the chat, we gathered community feedback before finalizing our June 2018 Google Hangout date. That will happen THIS Thursday (June 21st, 2018). The link does not get sent out publicly. If you possess interest in joining the Hangout, send a message to our CPChatNow Facebook fan page.

Before you go though, remember to answer the week’s extend-the-conversation question. “How do you handle fatigue related frustration?” Reply below in the “Comments” section.

Until next time, remember. Do not blend in. Blend out!

-Zachary

#CPChatNow Recap 6-6-2018

Posted on June 13, 2018 by devinaxtman

#CPChatNow was chipper this past week as members talked about things such as teaching their friends, what they would like their legacy to be, and whether they prefer moving or sitting activities. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, #CPChatNow would like to note the passing of someone who meant a lot to many in the cerebral palsy community, Dr. Karen Pape. Dr. Pape was a clinical neuroscientist and author. You can find her TED Talk here. She also did a focus chat for #CPChatNow. You can find the recap for the focus chat here.

Zach tweeting about Dr Pape's death on June 2nd

Next, Amanda shared a story of a friend helping a man using a walker leave a restaurant. This is a great example of knowledge of disability expanding knowledge and empathy.

Amanda shared a story of a friend helping a man using a walker leave a restaurant. She shared a story of the friend saying knowing Amanda has helped expand his knowledge.

Legacy soon became an emerging topic, sparked by Dr. Pape’s death mentioned earlier. Community members discussed the legacies they want to leave:

Members discussed the legacy they hoped to leave. Zach and I shared our thoughts. Rachel cautioned about doing too much for others

Continuing the widespread dialogue, members talked about whether they prefer activities that involve movement or activities that involve sitting. The consensus was movement, but that a balance was necessary to prevent overwhelming fatigue. Hot showers were a favorite as well.

Rachel prefer movement oriented activities where her muscles are engaged in active and passive stretch like yoga or taking a hot shower. Zach agreed on liking hot showers

Chris agreed with Zach and Rachel on need for moving activities, but talked about the need for a balance.

This brings us to our extend-the-conversation question: What are your go to activities to get moving? Please share your answers in the comments!

Extend-The-Conversation Question in white at the top. What are your go to activities to get moving? in the middle with the #CPChatNow white logo. A person is standing in the middle of trees with their arm up

Tweet you later!

-Devin

#CPChatNow Recap- 05-30-2018

Posted on June 5, 2018 by zacharyfenell

Resembling a box filled with chocolates, the live weekly cerebral palsy Twitter chat #CPChatNow featured quite the variety Wednesday, May 30th, 2018. To keep the analogy going, that makes me, co-host Zachary Fenell, (insert your favorite chocolatier here). So shall we explore the deliciousness embodied by Wednesday’s discussion?

One endearing characteristic our weekly chat possesses involves the welcoming community. Participants can come and go due to life’s hurdles. Once cleared though, you can count on a warm greeting back. Just ask Hannah Pike and Yasmin!

Fellow regular Linds greeted Hannah using a fun dancing GIF. Meanwhile both my co-host Devin and I expressed our excitement to see Yasmin again. Yasmin’s presence represents a dedication towards our chat considering in her time zone #CPChatNow happens at 1am!

Shortly following the salutations conversation garnered greater substance. Devin’s extend-the-conversation question from the previous recap surfaced as a topic.

Earlier in the day I teased an interesting answer to the extend-the-conversation question Devin posed.The question asked “What did your therapists do to keep you interested in therapy?” Hannah and I each gave our answers.

I shared my physical therapist awarded me trophies to commemorate achieving long-term goals. Hannah recalled her therapists letting her listen to music. The answer intrigued me because I remember therapists using music to distract me amidst intense stretching.

Later in the evening Devin added to the evening’s assorted dialogue, tweeting a current news story.

The aforementioned story detailed two friends going to prom together. Nonetheless rather than taking a patronizing or pitiful tone, the item broke the usual prom story mold. View and judge yourself.

Keeping the interesting subject matters flowing, regular participant Seth asked a compelling question.

He asked, “How old does a child staring at you have to be before it is a problem? Do you react different if it is a three-year old to it is a seven-year old to a 12-year old?”

Giving an ambiguous reply, I responded saying the situation matters more oppose to age. After all, everyone matures differently! Devin said stares become a problem once kids reach their teenage years. What do you think? Answer Seth’s question as the week’s extend-the-conversation question.

“How old does a child staring at you have to be before it is a problem? Do you react different if it is a three-year old to it is a seven-year old to a 12-year old?”

Comment below to reply. Until next time remember, do not blend in. Blend out!

-Zachary

#CPChatNow Recap- 5-23-2018

Posted on May 29, 2018 by devinaxtman

This past week in #CPChatNow was bustling as always. Members talked about recent hikes, riding bikes, and physical therapy being fun. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I wanted to highlight a tweet from a member about something that occurred outside of the regular #CPChatNow window of 8-10pm eastern time each Wednesday. Regular member, Timmy, shared a photo of a weekend hike:

A picture of Timmy standing by the Mount Everett summit sign

Timmy showed that #CPChatNow and people with CP are doing things all of the time!

Riding bikes was a common theme in this week’s chat after Zach shared a story about a man excelling at adaptive cycling. Zach and Linds chatted about their history of riding bikes:

Zach and Linds talked about bike riding. Zach said he did not have the core strength to get beyond training wheels. Linds tweeted she used to ride and sometimes fell off, but has been unable to due to health reasons and no time to recover

The bike conversation went in another direction as Zach and I talked about how our physical therapists thought of fun ways to get us involved in physical therapy (PT):

Zach and I tweeted about sports being a part of physical therapy. I tweeted sports were a big part of therapy and zach expressed that he wished sports was a bigger part of his therapy

I tweeted a milestone in physical therapy was running around the bases. Zach recalled getting in catcher position to catch bean bags and the challenge of keeping his balance

This brings us to our extend-the-conversation question, “What did your therapists do to keep you interested in therapy?”

A picture of a baseball stadium in the background. Extend-The-Conversation Question in white with the extend-the-conversation question at the top of the picture. The white #CPChatNow logo at the bottom

Please share your answers in the comments and join us each Wednesday at 8pm Eastern on Twitter at #CPChatNow.

Online community for those with cerebral palsy!