#CPChatNow Recap- 9-12-2018

Posted on September 18, 2018 by devinaxtman

#CPChatNow was rocking as always last week. Members discussed the upcoming season of Speechless, the importance of senses, and what character they would be in a book. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members talked about the upcoming season of Speechless.

Zach and Blemi discussed the upcoming season of Speechless. Blemi states she stopped watching it in season 1. Zach said he can relate sometimes while not at others.

Next, Hannah shared her excitement about new glasses. She shared how much easier life has been since regaining her vision:

Hannah shares her excitement about new glasses and increased vision. Zach shared his reliance on vision for walking and Hannah concurred

Zach and Hannah discussed the loss of different senses and Hannah shared that she would likely deal OK with losing her hearing because of her knowledge of ASL:

Zach and Hannah discussed the loss of different senses and Hannah shared that she would likely deal with losing her hearing because of her knowledge of ASL

This brings us to our extend-the-conversation question, “Which of the five senses do you feel is the most important?” Leave your answer in the “Comments” section.

Continuing on, Zach asked what book people would add themselves to and how they would change the story.

Zach asks what book members would add themselves to. Ayden shares the Count of Monte Cristo to support Dantes

Zach tweeted about being a character in To Kill A Mockingbird and sticking up for Boo Radley:

Zach tweets about being in To KIll A Mockingbird and helping Boo Radley

Extend the Conversation Question in black. A graphic with the five senses in circles around a brain with a drawing of a nose, mouth, ear, hand, and eye. Which of the five senses do you feel is the most important? on the bottom with the multi-colored #CPChatNow logo on the left Make sure to keep the conversation going by answering the week’s extend-the-conversation question. Again that question asks, “Which of the five senses do you feel is the most important?” Leave your answers below!

-Devin

#CPChatNow Recap- 09-05-2018

Posted on September 11, 2018 by zacharyfenell

Wednesday, September 5th, 2018 saw members in the #CPChatNow community celebrate achievements, exchange wisdom, and much more during the weekly cerebral palsy Twitter chat. I am co-host Zachary Fenell, here to recap the chatter from the night. Between the weekly chats Timmy Le used the hashtag to share an impressive accomplishment.

Timmy talked about summit hiking up the highest mountain in the Northeast. You can see his pride in the accomplishment looking at his summit photo.

While Timmy touted his hiking victory, others discussed how their lives mirror a metaphorical hike. Our beloved “Resilient Wench” Rachel provided advice to help handle life’s difficult terrain.

Needing prisms again left Rachel bummed for awhile, but a friend recommended she try to see her difficulties as virtues. Although a lot easier said than done, I found the advice sound. To show difficulties can indeed serve as virtues, answer for the week’s extend-the-conversation question “What is a difficulty you have come to see as a virtue?” Respond in the “Comments” section.

Keeping the recap moving forward, a little later in the evening I asked a question regarding spasticity.

Curious, I asked if people noticed an increase in spasticity at a certain time during the day. Longtime regular Hannah Pike initially said no, but noted feeling more spastic on rainy days. I seconded the rainy day sentiments and added I feel greater spasticity in the mornings. The increase I attribute to how I sleep at night. My comments caused Hannah to rethink and realize she notices her spasticity at night more due to less distractions occupying her mind. My co-host Devin Axtman also related to Hannah’s answer.

Additionally, Devin announced our September 2018 Google Hangout date.

Google Hangouts allow us to enjoy face-to-face dialogue via Google’s video chat platform. For privacy reasons, we do not distribute the link to the Hangout publicly. Please contact us through the #CPChatNow Facebook fan page to inquire about getting added to the Hangout invite list. Plus remember to answer the week’s extend-the-conversation question, “What is a difficulty you have come to see as a virtue?”

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

-Zachary

#CPChatNow Recap- 8/29/2018

Posted on September 5, 2018 by devinaxtman

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

Zach announced that he is going to do a 5K as a warm up to another marathon in October:

Zach announcing he has registered for the Helping Hands Heroes 5K which benefits the hospital where he had surgery

Members also talked about doing a Real Housewives of CP program:

Rachel tweeted there should be a real housewives of CP program. Heather said for enough money she could learn to be catty. Zach shared a Ted Dibase gif

Jen and Hannah talked about Hannah’s dog Levi walking alongside her walker at PetSmart:

Jen asked how Levi is doing with the walker training. Hannah said they haven't done it again

Finally, Zach talked about a moment at work when he accidentally pushed over a book cart a la WWE wrestler Braun Stroman:

Zach talks about accidentally flipping over a book cart at work.

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

#CPChatNow Recap- 08-22-2018

Posted on August 28, 2018 by zacharyfenell

Participants in the weekly cerebral palsy Twitter chat #CPChatNow had much on their minds Wednesday, August 22nd, 2018, a fact apparent by the conversation’s flow. I am co-host Zachary Fenell, tasked to arrange the various topics discussed into one concise recap. A question asked during the previous week’s chat resurfaced sparking early dialogue.

New #CPChatNow participant Molly Adamson asked about others’ experiences with able-bodied siblings. Heather DeYoe recalled noticing her disability for the first time when she needed surgery but her sister did not. Meanwhile my answer rerouted the chatter.

Blemi and Jen related to my reply. I explained I noticed my CP because I went to AM kindergarten while my two brothers attended PM kindergarten. I attended AM kindergarten so in the afternoon I could go to preschool to receive physical therapy. My third year in preschool! Blemi mentioned spending three years in kindergarten and Jen spent three years between kindergarten and early childhood. All while my brothers enjoyed sleeping in before their PM kindergarten classes! Sleep actually surfaced as another subject matter.

Recently I changed how I sleep on my bed because I kept waking up with back pain. Switching where I lay my head proved easier than trying to flip my mattress. My remarks intrigued co-host Devin Axtman who also sometimes has back pain after sleeping. I said a worn mattress could cause those problems but the best mattresses end up costing more money. Blemi anticipated the day she can get a bed where each side can move based on the person’s preference.

Later in the chat Devin raised an important issue.

Devin retweeted Texas Tribune’s story covering disaster and emergency preparedness. I admitted to not planning, although I know I should. Knowledge I gained years ago when I connected disability advocate Anita Cameron with Handicap This, leading to a three-part guest blog examining emergency preparedness. You can still read those posts.

Unlike Devin and I, participant Jake Jordan said he makes an effort to stay prepared. How about you? If like Devin and myself, due yourself a favor and answer today’s extend-the-conversation question. “How can you get started with your emergency preparedness planning today?” Leave your reply in the comments.

Make sure to join the conversation on Twitter too! We welcome both new faces like Molly and ones from past #CPChatNows. That includes MIA co-host Jorge Otezia who happened to drop in on the 22nd.

Come say hi too, Wednesday at 8pm ET on Twitter. Just use the hashtag in your tweet to enter our community. Or, you can partake by answering the extend-the-conversation questions asked here in the recaps. Again, this week’s question asks “How can you get started with your emergency preparedness planning today?” Respond below.

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

-Zachary

#CPChatNow Recap- 8/15/2018

Posted on August 21, 2018 by devinaxtman

#CPChatNow was bumpin this past week as usual. Members talked about making Palsy playlists, running, their startle reflex, hand movement, and sharing their CP with family members. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

We start the recap with Rachel sharing her awesome palsy playlist with songs related to movement:

Rachel shares her Palsy playlist with Zach pointing out Born This Way is a perfect song

Next, Rachel, Zach, and Pickman discussed their challenges with running and frustration with not being able to do more:

Rachel, pickman, and Zach discussing their frustrations with running, not being able to do more, and dropfoot

Next, Pickman discussed feeling jumpy and Rachel told him about the dreaded Moro startle reflex:

Pickman and Rachel discussed the Moro/Startle Reflex and difficulty getting information from doctors

Next, Ciarán noted that it is becoming easier for her to move the fingers in her right hand. Rachel bemoaned the lack of movement in her right hand while coming up with a great metaphor of using her right hand being like picking up cereal with a fork:

Ciaran states it is easier to bunch the fingers in her right hand while Rachel bemoans the use of her right hand

Ciaran talks about flailing around with her right hand on the bus while Rachel compares using her right hand like using a fork to pick up cereal.

Finally, talk turned to how much (if at all) families talked about member’s CP. Molly stated her family did not talk to her brother about her CP and asked when other’s families did. I shared age appropriate things my parents would say to tell other kids:

Molly asks when other's parents talked about their disability. I shared my parents were honest and would tell me to say things like, "My muscles work, just not as good as yours"

This brings us to our Extend-The-Conversation Questions inspired by Molly’s tweet: When did your parents talk to your siblings about your CP?

A father walking with his children up a dirt road. One child is pushing a red wagon and the boy holding his father's hand. The extend the conversation question When did your parents talk to your siblings about your CP? is above them in yellow wording, the multicolor #CPChatNow logo is to their right, extend-the-conversation question is below them in red letters

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

#CPChatNow Recap- 08-08-2018

Posted on August 17, 2018 by zacharyfenell

A serious tone emerged during the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, August 8th, 2018. I am co-host Zachary Fenell, hopeful you will forgive me for the tardy recap. You continuing to read I will interpret as forgiveness. Thank you.

Going into the evening I personally felt rather exhilarated.

Towpath Marathon’s Facebook page sharing a post I shared fueled my elation. Particularly, their comment “We’re looking forward to seeing Zach in two months!” Like I explained to our community, I feared the staff might adopt a different attitude, “Not again!” After all, I needed almost 12 hours to complete the 26.2 miles the previous year.

My fellow #CPChatNow co-host Devin Axtman remarked how life would prove easier if everyone demonstrated Towpath’s welcoming attitude. I asked “What do we have to do to make that happen?” Devin thinks the answer relies in educating children. Adding to his point I emphasized the importance behind consistent education, oppose to a special assembly here and there. What do you think? Answer for the week’s extend-the-conversation question, “How can we help others obtain a more welcoming attitude towards disabilities?” Leave your answer in the “Comments” section.

Regarding answering extend-the-conversation questions, I raised the prior week’s question.

Amidst the August 1st, 2018 #CPChatNow recap Devin posed the question, “What goes into your decision when deciding to use a mobility aid?” #CPChatNow regular Rachel explained her decision making process, saying sometimes she benefits from not using a cane. but remains tempted to use one to visually show others a need for space with her movement. I replied saying a cane seems to make other people more accepting. Otherwise they tend to stare and think you are just a drunk. Sentiments Rachel related to.

Rachel echoed the idea people mistaken individuals with cerebral palsy as drunks. She suspects others avoid helping her up due to this. Jeni Briere noted the danger in said scenario.

Jeni recalled a famous Welsh poet Dylan Thomas who died in a diabetic coma because others mistook him for a drunk.The thought left Jeni pondering how many more suffer because they appear intoxicated. Let us not end on such a somber note, though. During the August 8th chat, we announced our August 2018 Google Hangout date.

Besides marking your calendar, also remember to answer the week’s extend-the-conversation question. “How can we help others obtain a more welcoming attitude towards disabilities?” Respond in the comments below.

Until next time,

-Zach

#CPChatNow Recap 8-1-2018

Posted on August 7, 2018 by devinaxtman

This past week in #CPChatNow was a banger as the kids say. Members talked about topics ranging from receiving hugs and using mobility aids abroad to sharing their accomplishments in school plus more. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Timmy shared his latest accomplishment in graduate school, a cool presentation that I still don’t understand even after an explanation tweet.

Timmy standing in front of his presentation

Timmy explaining his presentation

Blemi talked about how she doesn’t like hugs because she sometimes almost gets knocked over:

Blemi discusses how she doesn't like hugs

Finally, Hailey shared she is going to Ireland and is thinking about whether to use crutches or a cane.

Hailey talks about deciding whether to use a cane or crutches in Ireland

Hailey expressed concern about the rocky terrain in Ireland

This week's extend-the-conversation question asks, "What goes into your decision when deciding to use a mobility aid?" This brings us to our extend-the-conversation question: What goes into your decision when deciding to use a mobility aid?

Answer with a comment below. Then remember to join our live Twitter chat Wednesday at 8pm ET.

-Devin

Online community for those with cerebral palsy!