#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

#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

Online community for those with cerebral palsy!