#CPChatNow Recap- 10-4-2017

This past week was an exciting week in #CPChatNow as Zach welcomed a nephew, #CPChatNow welcomed new members, and members discussed using a cane and stretching.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap.

However, in a bit of Breaking News outside of the chat, our #CPChatNow Co-Host, Zachary Fenell, finished his marathon on Sunday.  Kudos to Zach for following a dream and having the courage to see it through!

Zach announcing he finished his marathon in 11 hours, 40 minutes, and 31 seconds

Also, congratulations are in order to Zach as he welcomed a nephew last week:

Zach announcing he welcomed a nephew this week with Ryan offering congratulations

Blemi, Hannah, and Zach discussed the independence and confidence that regular use of a cane can bring:

Blemi and Hannah discuss the increased independence and confidence that using a cane can bring

#CPChatNow welcomed a new member this week as Chandler Gobin joined the chat.  She discussed wanting to do a 5k with Zach and Zach discussed his preparation including regular exercises, training, and range of motion.

Zach and Chandler discussing preparations for a 5k including regular exercises, training, range of motion exercises. Chandler reports she forgets to stretch

Chandler and Rachel discussed spasms that Chandler has been experiencing. Rachel offered advice of checking her IT band and hip flexors while joking she should get a medical and therapy degree with all of her PT and OT

Chandler discussing her spasms while Rachel suggests checking her IT band and hip flexors

Rachel jokes she should get an honorary medical and therapy degree with her 20 years of PT and OT experience

Rachel’s Tweet brings us to our Extend-The-Conversation Question: What “awards” do you feel you should win from having CP? My award? The Straightest Legs in My Youth Gymnastics Class (I couldn’t bend them).

A picture of a gold trophy centered on a white background. There is black lettering of What "awards" do you feel you should win from having CP? above the trophy with the multi-colored #CPChatNow logo on the bottom left hand corner

Tweet you later!

*Devin

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#CPChatNow Recap- 9-20-2017

Last week was an eventful week in #CPChatNow as always!  Members discussed searching for their medical records, the return of the TV show Speechless, their high school accommodations, and the importance of self-advocacy.  This is #CPChatNow Co-Host, Devin Axtman taking you along for the ride on this week’s recap.  Buckle up!

The chat started out on a light note as Mindy discussed the difficulty of finding medical records and Blemi shared in the frustration:

Mindy expressed frustration she can't find her medical records. Blemi stated she found her's with a chocolate stain

Next, the chat turned to #CPChatNow’s favorite TV show, Speechless! Speechless returns Wednesday at 8:30 Eastern! Zach shared a fantastic article covering the show and we discussed the director of Speechless saying a goal was to lose the shackles of the “dreaded disability factor”:

Zach and Devin discussing the return of speechless and the director's thoughts

Talk then turned to high school accommodations and how much members were involved in their own accommodations. Blemi mentioned that her small town in Canada just did the bare minimum:

Blemi and Zach discussing high school accommodations in Canada. Blemi said there is no national standard and her small town did the bare minimum

Blemi reported that her school just exempted her from PE and allowed her to simply write papers.  Simply excusing something rather than accommodating for disability is definitely not the best response:

Blemi reported she wrote papers instead of doing PE

Christine and Zach discussed their evolution from being mad at being included in IEP meetings to taking self-advocacy as a point of pride:

Christine and Zach discussing their evolution from being shy to feeling prideful regarding their disability

Omens also discussed the occasional difficulties of self-advocacy, but rejoiced in the good moments when you find an ally that helps you like their stat teacher:

Omens discusses difficulties with self-advocacy and her stat teacher being her ally

This brings us to our Extend-The-Conversation Question: What memorable stories do you have surrounding CP and self-advocacy?  Please share your answer in the comments!

Tweet you later!

Devin An oranage cat in the lower left hand corner with a shadow of a lion. There is white text saying Extend-The-Convrsation and What memorable stories do you have surrounding CP?

#CPChatNow Recap- 9-6-2017

This past week was an eventful week in #CPChatNow as always.  Members discussed hurricanes, new semesters and houses, and difficulties with transportation. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.  All aboard!

First, we would like to share some good news.  Longtime #CPChatNow member, Erin, is OK following Hurricane Irma.  We discussed her hurricane plans last week:

Erin discussing her hurricane plans with caregivers, food, and water.

Perhaps not surprisingly with the time of year, much of #CPChatNow was focused around school.  Omens joined #CPChatNow to discuss fatigue and school accommodations.

Omens discussing her fatigue at school with accommodations such as an extra set of books, unlimited absences, and ability to leave class early

She also talked about her school providing students laptops to take notes.  This is a good example of Universal Design helping everyone:

Omens discuss that she has a laptop to take notes

Zach relived college by sharing his perceived benefits towards living on campus:

Zach and Jen discuss how Zach living on campus allowed him to learn how to avoid conflict

Next, Jen has discussed in previous weeks how she has been adjusting to her new house.  She shared that she has a device that helps turn on ceiling fans and lights, but wondered if there was a similar device for the bathroom:

A picture of a white remote with gray buttons for turning on fans and lights on a table along with a Jen tweet asking if similar devices exist for bathrooms

Finally, Hailey joined #CPChatNow to let us know that she started grad school. However, she shared her frustration with lack of reliable transportation:

Hailey reporting that she has returned to grad school, but shared her frustration with lack of reliable transportation

I will use Hailey’s frustration about transportation for this week’s Extend-The-Conversation Question: What is the worst societal obstacle when it comes to your CP?  Please share your answers in the comments!

Join us every Wednesday at 8 EST on Twitter at #CPChatNow.

Tweet you later-

DevinA black wheelchair in front of gray stairs with blue text on a gray background of the Extend-The-Conversation question. The Multicolor #CPChatNow logo is in the bottom right hand corner

#CPChatNow Recap- 8-23-17

#CPChatNow was bustling as always this past week as members discussed moving, marathon training, and perceptions of disability.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s ride.

The chat included some members sharing some exciting news in the disability world.  I shared a cool story from Canada about a woman with CP repelling down a skyscraper to raise money for charity:

Next, Dave shared some news about an exoskeleton helping people with CP with movement.  Technology continues to offer exciting advancements for people with disabilities!

Dave tweeting about a freaking amazing exoskeleton. He shares that working out power will be a gamechanger

Jen shared this was the last #CPChatNow in the house she grew up in and her feelings surrounding the move.

Jen discussing her upcoming move and the bittersweet feelings surrounding it

Next Zach talked about how his October 8th marathon was drawing closer and the organizers have agreed to allow him to have an early start as an accommodation for his CP:

Zach discussing his October 8th marathon and the 31 training days to go. He states he has 31 training days left

Finally, talk turned to the perception of disability in society.  This was started by Zach as he stated that he did not like to take off his shoes during gym class because people would ask him about his DAFOs.  Elizabeth jumped in to the discussion with a question that spurred more discussion about the perception of disability in society largely being something that is to be ashamed of.

A discussion of gym class, DAFOs, adulthood, and disability perceptions in society

For our Extend-The-Conversation question this week, I will use the theme of changing perceptions in the transition to adulthood.  What personal perceptions about disability have changed as you entered adulthood?

Tweet you later!

Devin

A sunset with a desert formation on the horizon. The Extend-The-Conversation Question of What Personal Perceptions of Disability Have Changed As You Entered Adulthood? A white #CPChatNow logo on the bottom

#CPChatNow Recap- 8-2-2017

This past week in #CPChatNow brought up varied topics as always.  Members discussed issues with healthcare professionals, breaking in athletic shoes, and our Focus Chat next week on accessible gaming with AbleGamers!  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

A common theme this week was discussion of member’s distrust of healthcare professionals.  Rachel expressed frustration that medical professionals do not want to discuss Cerebral Palsy, but they are happy to treat the symptoms of CP.

Devin tweets about how doctors blame CP for stuff while Rachel tweets that professionals rarely discuss her CP and just treat symptoms

Rachel further expressed her frustrations with medical professionals predictions being wrong about her abilities.

Rachel expressing frustration about ways medical experts have been wrong about her ability

Next, talk turned to stupid questions asked by doctors when Hannah chimed in with a stunning question from a doctor.

Zach tweeted about stupid questions asked by your doctor. Hannah said she had a doctor ask if she still had CP. Rachel pointed out this is like a Speechless scene

Zach also expressed frustration about breaking in his new athletic shoes. Rachel pointed out this has been issue for her, but she has gotten relief from inverts and a new masseuse.

Zach expressed frustration it has taken awhile to break in new athletic shoes. Rachel pointed out this takes 6 weeks, but she has gotten relief from inverts and a new massuese

Members discussed issues they experienced with extreme temperatures.  Zach also shared he set a personal best in a 5K as he works towards completing a full marathon.

Blemi then discussed difficulties her body experiences during extreme cold.  Rachel shared she also has difficulties with extreme cold.  Zach shared some happy news that he had just set his personal best in a 5K.

Finally, #CPChatNow is incredibly excited to announce that our next Focus Chat will be next Wednesday, August 9th, with the folks behind AbleGamers. AbleGamers is a 501(C)(3) nonprofit public charity that aims to improve the overall quality of life for those with disabilities through the power of video games.  Craig also reached out to Rachel after she expressed frustration surrounding video games.

Zach announced the AbleGamers Focus Chat for August 9th, Rachel expressed frustration with video games, Craig from AbleGamers reached out to her to offer assistance.

This brings us to our Extend-The-Conversation Question and it ties in to next week’s Focus Chat: What are difficulties you have experienced surrounding CP and gaming? Please share your answers in the comments.  Also, don’t forgot to join us for our Focus Chat next week! A black background with the extend-the-conversation question What are difficulties you have experienced surrounding CP and gaming? in gray text with gaming in all caps. #CPChatNow white logo in bottom left hand corner

Tweet you later!

-Devin

#CPChatNow Recap- 7-19-2017

This past week was a lively week in #CPChatNow as always.  Members discussed marathon training, the impacts of road trips on their CP, media portrayals of disability, and the use of CP in their Twitter handle.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

#CPChatNow Co-Host, Zachary Fenell, opened the chat with some exciting news, announcing that he is training for a marathon with the help of original #CPChatNow member, John Quinn.

Zach announcing that he is training for a marathon 22 miles per days with John Quinn's help

John Quinn stating that he did the San Diego marahon

Next, talk turned to difficulties members have on roadtrips due to the time spent in the car making their muscles tight.

Members discussing how roadtrips impact their depth perception and muscles

#CPChatNow member, Shira, also talked about the issues she had with the media regularly putting prominence on a person’s disability over other aspects of their story. Members differed on whether it was to grab attention or highlight the increased risk of violence people with CP face.

Members discussing disability use in headlines

Finally, talk turned to the reasons members do or do not use CP in their Twitter handle.  Members discussed how it is part of their life and that they use it to empower others while others did not perceive CP as something that defines them.

Zach and I talking about how I use my CP Twitter handle as a tool to empower others

Kate stating she had it in her handle so others would know when she followed someone. Blake stated he felt inspiration stuck

Now, for some housekeeping announcements. The first is that Co-Host, Zachary Fenell, will be leading a Focus Chat on writing a CP book/memoir on July 26th!

Also, our next Google Hangout will be taking place on July 27th

Now, to our Extend-The-Conversation question.  I am going to play off Shira’s question for this one: What are some of your complaints about disability and the media?  Please share them in the comments.

Tweet you later!

Devin

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#CPChatNow Recap- 7-5-2017

This past week was a lively week on #CPChatNow as always.  Members discussed finding shoes that fit them, working on a disability pride march, important issues that face the disability community, and invasive questions they have been asked about their CP.  This is #CPChatNow Co-Host, Devin, taking you along for the ride. Enjoy!

This chat started out with some happy news as Hannah noted she found some sandals she can walk in:

Hannah tweets that she found sandals she can walk in and bought both shoes. There is a picture of her foot in a pink sandal. Zach replies that it is the little things in life while Hannah responds she is just happy to find shoes she can walk in

Next, Rachel noted that she is working on translating the Chicago Disability Pride March brochure into Spanish. We love to see positive change at #CPChatNow!

Rachel noting she may be working on translating the Chicago Disability March brochure into Spanish or at least volunteering for the march

Then, talk turned to Gabriella Burman’s question of, “What is the most important issue keeping people with disabilities from living a full and independent life?”  I started out by saying that I felt the most important issue is a society that is not set up for us. Transportation and attitude also came up.

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don’t give someone a chance, do all of the other variables matter?

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don't give someone a chance, do all of the other variables matter?

Finally, talk turned to what is the most invasive question anyone has been asked about their CP.

Zach asks what the most invasive question people have been asked is. Suzanne reports being yelled at an airport for using the accessible stall. I pointed out that I get questions about why I am walking if I use my wheelchair

Hannah “won” the question (although, I don’t know if there are any winners here) by tweeting that she was asked how she used the restroom by herself.

Hannah tweets that she was asking how she uses a public restroom by herself. Zach says that it is better than being patronizing. Hannah tweeted that she just ignored the question

For our Extend-The-Conversation question, I would like to go back to Zach’s tweet about Hannah’s shoes being an example of “the little things” in life.  What are some of the little things you take pleasure in regarding CP?

Be sure to join us every Wednesday at 8 EST on #CPChatNow on Twitter!

Tweet you later!

Devin White text in front of a background of waves crashing onto rocks: What are some of the little things you take pleasure in regarding CP? White #CPChatNow logo below question