#CPChatNow Recap 6-6-2018

#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

 

 

 

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#CPChatNow Recap- 05-30-2018

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!

To express her excitement of seeing Hannah back in #CPChatNow, Linds tweeted a fun dancing GIF.Yasmin joins #CPChatNow for the first time in a long while.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.

The extend-the-conversation question from the May 23rd recap came up during the chat May 30th.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.

Zachary shares a picture of him as a child triumphantly holding a trophy given to him by his physical therapist.Hannah and Zachary compare notes about therapists involving music in their PT sessions.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.

Devin shares a current news story about two friends going to prom together.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.

Seth asked #CPChatNow where they draw the line at children staring at them.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.

Answer for the week's 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?" “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

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.

#CPChatNow Recap- 05-16-2018

Experience develops into insights and the live cerebral palsy Twitter chat #CPChatNow proved quite insightful Wednesday, May 16th, 2018. I am co-host Zachary Fenell, smarter after this past Wednesday and ready to pass along my newly gained knowledge. So relax and enjoy the May 16th recap.

If only relaxing remained that simple! Early chatter revolved around stress and hypertension. Showing vulnerability, I asked the “stupid” question. “What is hypertension?”

My co-host Devin Axtman explained hypertension as the medical term for high blood pressure. Channeling the mindset original #CPChatNow co-founder John W. Quinn always displayed, I sought to get us focusing towards solutions opposed to dwelling upon problems.

#CPChatNow participants discuss activities that help relax them.Regular R responded to my question regarding what activities relax her, listing off quite the number! R’s response initially included mediation and yoga to relax muscles. She quickly added, “biofreeze, tacos, massage, epsom salt whirlpool baths, stretching, plenty of water, tacos, chocolate, weighted blankets.”

Personally the weighted blankets item caught my attention. Earlier in the week in a CP related Facebook group I belong to, someone posted about weighted blankets. Therefore R’s mentioning weighted blankets peaked my curiosity.

R explains how weighted blankets work and the benefits she finds from them.Devin pondered my question, figuring weights in the blanket could apply pressure. Meanwhile R provided a more certain reply, detailing why weighted blankets work well with spasticity.

Relaxing activities continued a popular subject. Devin and I each shared what relaxes our respective selves.

Devin and Zachary share what activities relax them.Probably unsurprising to most in our community, I said physical activity relaxes me. Within the aforementioned physical activity I included my library job, a physically involved position. You might additionally come across Devin at the library when he needs to relax considering my co-host reads to relax.

Your turn to share! Answer for the week’s extend-the-conversation question, “What activity relaxes you?” Reply in the “Comments” section.

Perhaps you too relax by reading, using weighted blankets, or striking particular yoga positions. Maybe though, your relaxing activity differs. Sleep may represent your safe haven. Actually sleep surfaced during the discussion on relaxing and quickly became the chat’s concentration.

#CPChatNow participants discuss difficulties they experience sleeping.Although multiple participants deemed sleeping relaxing, falling asleep stood out as troublesome. A commonality Casey attributed to CP. R agreed 100%. The two further bonded over difficulties falling asleep.

Casey and R think people who take falling asleep for granted are crazy!Casey called those who take falling asleep for granted crazy and R resonated with the sentiments. Despite a frustration many nights, trouble falling asleep will supply an asset this Thursday, May 24th. You will not want to fall asleep early Thursday since we will host our monthly CPChatNow Google Hangout that evening. The May 2018 Hangout date we finalized during the chat May 16th.

Based off community feedback CPChatNow will hold their May 2018 Google Hangout Thursday, May 24th.Combining feedback received during the Twitter chat alongside responses to our private Facebook group post, the May 2018 Google Hangout will happen this Thursday, May 24th. Message the #CPChatNow Facebook fan page to inquire about receiving the link to the Hangout.

Answer for the week's extend-the-conversatoni question, what activity relaxes you? Leave your reply in the "Comments" section.Before leaving to message us on Facebook, remember to answer the week’s extend-the-conversation question. “What activity relaxes you?” Comment below to reply.

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

-Zachary

 

#CPChatNow Recap- 5-9-2018

This past week in #CPChatNow was jumping as always.  Members talked about being ambidextrous, learning to fall, and rebelling against CP.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

Zach and Grace talked about being ambidextrous and whether that translated to falling to one side or the other:

Zach and Grace talking about whether being ambidextrous translated to falling more on one side. Grace tweeted she is, but tends to fall on her right side

Members then talked about learning to fall.  Stacey expressed surprise that was a thing, but many members such as Zach and Hannah tweeted about learning to fall:

Zach and Stacey tweeted about learning to fall. Stacey said she had never learned to fall, but she falls on her stronger side.

Zach and Hannah tweeted about different techniques regarding learning to fall in PT:

Zach tweets about learning to fall on his dominant side. Hannah tweets she learned ways to catch herself. Zach tweeted he went to private PT

Zach, Hannah, and I tweeted about having private PT and our parents sweating over payment details:

Zach, Hannah, and I tweet about having private PT when younger and not thinking about the payment details

Next, talk turned to an interesting question Zach had.  He asked members about the first time they could remember rebelling against their CP.

Zach asked about the first time members rebelled against their CP. Zach tweets about not leaving classes. Jen tweeted about grabbing things with her claw rather than asking for help

Hannah tweeted about moving to Nashville and Zach tweeted about his parents being unsure about him competing in his first marathon:

Hannah tweets about rebelling by moving to Nashville. Zach tweets about doing the marathon and reassuring his parents

This brings us to our Extend-The-Conversation question.  Zach had all of the good questions this week, so I will ask his question again for those who couldn’t participate on Twitter: “What was the first decision you made to rebel against people’s concerns over your CP?”  Share you answers and the results in the comments

Extend-The-Conversation-Question in black text at top. A grey person standing with hand up to his chin as if thinking with 3 red arrows going right, straight, and left. What was the first decision you made to rebel against people's concerns over your CP?What was the first decision you made to rebel against people's concerns over your CP? What was the first decision you made to rebel against people's concerns over your CP? is below in black text. Multicolor #CPChatNow logo in left hand corner

 

 

#CPChatNow Recap- 05-02-2018

Much conversation covering assorted topics took place Wednesday, May 2nd, 2018 during the live cerebral palsy Twitter chat #CPChatNow. Hello, I am co-host Zachary Fenell and I am in a summarizing mood. Fitting since my task today calls for me to provide you your weekly #CPChatNow recap!

Early on in the evening the discussion revolved around stretching.The topic initially surfaced earlier in the week within our private Facebook group. Said group offers a more secure platform to discuss personal issues. To keep the space secure, we limit who we permit in. However, everyone should feel welcome to like our Facebook fan page and engage with those posts.

Now getting back to the Twitter chat, R shared the thoughts she posted in the Facebook group additionally to Twitter. Personally I found familiarity amidst her input.

R and Zachary discuss how they stretch and finding the right balance of stretching.We agreed stretching requires a certain balance. Otherwise you cause additional discomfort. As the talk progressed R and I learned our stretching methods differ. I use my leg casts to stretch out. A method R finds ineffective in her case!

Meanwhile my co-host Devin added his own input.

Devin gives his input on the stretching conversation.

Devin admits to not really stretching. A luxury afforded to him thanks to the hot Texas weather! Devin, R, and my three different experiences stretching emphasizes a valuable cerebral palsy fact. CP and the best treatment options vary by the person.

Go ahead and tell what you find beneficial stretching wise! This week’s extend-the-conversation question asks, How often do you stretch? What kind of stretching do you do? Leave your reply in the “Comments” section.

Just like how answers will vary, the May 2nd chat also featured variety. Other subjects besides stretching emerged. Devin mentioned a Disability Scoop story he recently came across, “Trump Administration Seeks to Bar Immigrants with Disabilities.”

Zachary and Devin discuss details from the news article Devin mentioned.After reading Devin and I both questioned the origins to the statistics suggesting higher expenses. Plus Devin wondered how you implement such a distinction. Make sure to click the previous link and read the article yourself.

Moving to more lighthearted dialogue, Devin asked everyone about their summer plans.

Besides his best friend's wedding, Timmy plans to spend the summer in the lab.Timmy Le looks forward to spending his summer in the lab. Furthermore he has his best friend’s wedding to attend! Attending weddings appeared a commonality in multiple participants’ summer plans.

This summer R plans to attend only weddings and not wedding showers in an effort to keep to her budget.Devin has a family wedding to attend in July.This week's extend-the-conversation question asks "How often do you stretch? What kind of stretching do you do?"No matter what your summer plans entail, make sure you plan to also answer the week’s extend-the-conversation question. How often do you stretch? What kind of stretching do you do?

Answer with a comment below.

Until next time,

-Zachary

 

#CPChatNow Recap- 4-25-2018

The past week in #CPChatNow was humming as always.  I’m #CPChatNow co-host, Devin Axtman, taking you along on this week’s recap.

We start the recap with some good news from Timmy!

Timmy is his school's outstanding neuroscience student

Next, talk turned to a familiar topic with CP, falls.  Rachel reported she had a fall recently and the importance of not falling on her right side.  It is a fact of life with CP that you learn how to fall.

Rachel's left side is banged up from a fall that could have been worse. Wum Gin asked if Rachel ever breaks a fall with her left side. Rachel replies that is a bad idea due to no reflexes

Next, talk turned to sick days and benefits (or lack-thereof at work) along with the difficulties of working for a small business.

Rachel earned a sick day that she might use next week. Zach replied his position does not have benefits

Zach and Rachel continued tweeting about sick days. Rachel tweeted she's not covered under ADA due to her employer being a small business

Finally, talk turned to taking the staircase at events like sporting events and concerts.  The consensus was to only get up if necessary and not to go alone:

Shira tweeted about going the theater and dealing with a tricky staircase. Rachel agreed she hates getting up

Zach agreeing that he does not like going to stadiums by himself but he did go to a game at Wrigley field by himself

This brings us to our extend-the-conversation Question: Do you avoid doing things in public alone due to your CP?

The Extend-The-Conversation question: A red background with a white #CPChatNow logo. A picture of stadium stairs without a railing with Do you avoid doing things in public alone due to your CP? on the bottom

Share your answers in the comments.  Tweet you later!

-Devin