#CPChatNow Recap- 07-18-2018

Posted on July 24, 2018 by zacharyfenell

Spasticity held a tight grip on the conversation Wednesday, July 18th, 2018 during the live cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell, filling in for my co-host Devin Axtman who missed the July 18th chat. Before delving into the night’s discussion, I made a couple housekeeping announcements.

Due to increased hours at work I proved unable to finish the previous week’s recap prior to the 18th. That recap now remains ready to read, “#CPChatNow Recap- 07-11-2018.” Our other announcement related to our monthly Google Hangouts.

Unfortunately due to my and Devin’s schedules this month, NO July 2018 Hangout will take place. You could say our schedules remain tight. Literal tightness surfaced as a subject a short while later.

Recently encountering increased tightness, I asked the group what changes to their bodies they notice when their spasticity increases. Hailey Hughes mentioned experiencing more trigger spots in her back and tighter hamstrings. Heather DeYoe added fatigue and tension headaches to the list. Wum said her arm starts to curl. Plus her facial muscles tighten, causing her to smirk. These physical reactions can cause additional challenges.

Hailey and I both find tighter hamstrings leads to difficulty concentrating. Pain and discomfort distract our minds. Stretching helps to remedy the situation. However, another participant pointed out stretching does possess flaws.

Chat regular, the self-proclaimed “Resilient Wench,” Rachel noted stretching may shock the body and leave movements feeling strange. She instead prefers yoga triangle poses. Hailey also vouched for yoga. I recalled hearing others with CP previously praising yoga too. I admitted though, I would not know where to begin. Thankfully Rachel offered her insights.

Rachel shared her history with yoga, which dates back to her childhood. She explained due to her asymmetrical body and inability to form good muscle groups she will never surpass an amateur level. Therefore she does yoga on her own, guided by Adriene Mischler’s (Yoga with Adriene) Youtube videos.

This week's extend-the-conversation question asks, "How do you relieve hamstring tightness?"

Leave your response in the “Comments” section.

What about you? Answer for the week’s extend-the-conversation question, “How do you relieve hamstring tightness?”

Yoga? Stretching? Something else? Leave your response by commenting below.

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

-Zachary

#CPChatNow Recap- 7-11-2018

Posted on July 22, 2018 by zacharyfenell

A frustrated tone proved present Wednesday, July 11th, 2018 throughout the live cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell, here to recap said frustration. A current event triggered the early irritation.

Regular #CPChatNow participant Seth made a humorous remark insinuating environmentalists do not care about disabled people. Recently up to date on disability related news, I offered context for Seth’s tweet.

Hot topic news stemmed from Seattle banning plastic straws. Such a decision remains controversial because many with disabilities need the object my co-host Devin called a “vital tool.” I shared an article discussing the aforementioned plastic straw ban, which led to insightful conversation.

Personally, the news piece stimulated my curiosity. The coverage mentioned alternative straws, an item drawing my intrigue. Participant Wum Gin echoed sentiments that such options cannot compare to how plastic straws perform.

To the Seattle ban credit, they incorporated an exemption for disability and medical conditions. The question arose though, how do you enforce the exemption? No real answers surfaced. Instead the dialogue unraveled, leading to further disheartening issues.

Our beloved “Resilient Wench,” Rachel, thought in some cities you can receive a $250 fine if found using a plastic straw. Devin believed those fines applied to businesses, oppose to individuals. He even commented “I don’t see how they can stop an individual person from using a straw, but who knows.” I can confirm courtesy a CNBC report the $250 fine does indeed apply to businesses, NOT the individual. Information I obtained while researching the plastic straw ban prior to publishing today’s recap.

Within the moment July 11th however, I made a joke based off South Park‘s reoccurring one liner “They took our jobs!” The quip refocused our attention to the unfunny troubles people with disabilities encounter when seeking employment. Devin provided a specific example featuring a potential job applicant and Pacific Sunwear of California. You can read the story yourself, “EEOC Sues Pacific Sunwear of California, LLC.”

Unfair employment practices especially impact women with disabilities, a factor Rachel highlighted.

Between the gender pay gap and employers discriminating against disabled job applicants, women with disabilities sadly confront multiple injustices in their job seeking efforts. Truly infuriating! So upsetting you might find yourself angrily shaking. Both Rachel and I recounted personal experiences where an aggravating situation left us shaking.

Do you relate? Answer for the week’s extend-the-conversation question, “How does getting angry affect you physically?” Share in the “Comments” section below.

Well, looking back I realize July 11th’s chat contained a highly negative focus. Nevertheless we talked over important matters. I think #CPChatNow thrives because we don’t let the tough subjects intimidate us. Make sure to join us every Wednesday on Twitter, starting at 8pm ET. Tweet you then!

-Zachary

#CPChatNow Recap- 7-3-2018

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

Ironing remained another chore discussed:

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 pm 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

Online community for those with cerebral palsy!