#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

A street sign behind a clear blue sky with clouds. The sign has arrows saying internet, radio, magazines pointing to the left with television and newspapers pointing to the right. The CPChatNow logo is in white on top of a pink background and the extend the conversation question is also there in white

#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

#CPChatNow Recap- 6-21-2017

This week in #CPChatNow was an eventful week as always.  Members discussed many things such as: meeting their heroes, their personal definition of brave, and what the word spaz means to them.  This is #CPChatNow Co-Host, Devin Axtman, and I will be taking you along on this week’s ride.  Buckle up!

This week started with some exciting news as #CPChatNow regular, Hannah Pike, announced that she has fulfilled a bucket list item by meeting Carrie Underwood:

Hannah Pike meeting Carrie Underwood through a random draw Next, #CPChatNow Co-Host, Blake, also known as Jorge, offered an update on his always busy life:

Blake offering an update on finishing classes, starting a food truck, and working on a campaign

#CPChatNow also is continuing to expand internationally as Carissa Anne joined us from Australia!

Carrie Anne joining us from Australia and asking if anyone is familiar with the NIDS

Talk then turned to Jen describing her dog as a “spaz” and whether people consider that offensive:

Jen asking if describing her dog as a spaz is offensive. Most members agreed that it depends on the context

Next, talk turned to who members would most like to meet. A few members offered some people they would like to meet:

Zach asking who members would like to meet. Dave offered Alton Brown and Charles Eames

Zach and I discussed more people we would like to meet such as a professional baseball player, Walt Disney, or pro wrestling manager, Paul Heyman:

Zach stating he would like to meet an MLB player, I offered Walt Disney, while he offered Paul HeymanFinally, talk shifted to member’s definitions of what it means to be brave. Blemi and Rachel agree with the definition of doing something that scares you because you know you have to:

Zach asking what the word brave means. Blemi and Rachel agrees this is something that people do even though it scares you

Christine and Zach discussed the idea that someone is brave if they take a chance on something:

Zach and Chris agreeing that someone is brave if they take a chance on something

This brings us to our Extend-The-Conversation Question: What does being brave mean to you?  Please include your answers in the comments! An orange cat sitting and looking at its shadow which is a lion. Extend-The-Conversation-Question along with What does being brave mean to you? along with #CPChatNow white logo in the upper right hand corner

Also, don’t forget about our June Google Hangout on Thursday, June 29th at 7 PM!

Tweet you later!

Devin

#CPChatNow Recap- 6-7-2017

This week was an eventful week as always in #CPChatNow Land.  Members discussed a wide range of things from getting new leg braces, to doing ballet as kids, to underrepresentation in the Cerebral Palsy community.  This is Devin Axtman taking you along for this week’s ride.

First of all, I am humbled and honored to serve as full time Co-Host/Engineer for #CPChatNow.  Blake and Zach will both be staying on as co-hosts and contributing:

Zach announcing I will serve as a co-host

I started the conversation by discussing how I am in the process of getting new leg braces.  Christine and I bonded over our mutual hatred of the casting saw:

Me discussing getting new leg braces and Christine discussing her hatred of the casting saw

Next, Susanne talked about how she did ballet for 15 years and it helped stretch her calves and ankles. This is a great example of non-traditional methods being therapy for CP:

Susanne talks about how doing ballet for 15 years stretched her calves and ankles.

Talk shifted to public figures with CP and what complications are underrepresented in conversations:

Next, talk turned to issues that people with speech issues, a potential complication of CP, face:

Members shared their issues with difficulties with speech and their history with speech therapy.  On a positive note, Susanne shared that her speech issues landed her an audition:

Now, we’ll end the recap on some good news.  The person who attacked a man with CP at a gas station was arrested this week. However, Rachel pointed out that there is still work to do.

Finally, our next Google Hangout will be on Thursday, June 29th:

This brings us to our Extend-The-Conversation Question: What are some complications from CP that are underrepresented? Please share your answers in the comments. Extend-The-Conversation graphic: What are some complications from CP that are underrepresented?

 

#CPChatNow Recap- 5-24-2017

This week’s #CPChatNow Twitter chat was a meandering chat that reflected the busy nature of our member’s lives.  There was even a little bit of Español thrown in!  I am #CPChatNow Interim Co-Host, Devin Axtman, and I will be taking you along on this week’s recap.  All aboard!

This week’s chat took on numerous topics, but a well discussed topic was member’s feelings about the impact of therapy in their life.  Rachel shared a funny antidote that doing dishes was therapy for her after Blemi shared she was exhausted from doing dishes:

Rachel states doing the dishes was occupational therapy for her after Blemi suggests she was exhausted from them

#CPChatNow regular, Jessica, also shared why she felt the common belief that Physical Therapy is simply an extension of personal training is misplaced.  She shared this is more the case for adults, while for kids PT is about re-establishing Nuero pathways.

Also, one of #CPChatNow’s founders, John Quinn, stopped by and shared the latest always interesting developments in his life.  Seriously, check out his book, Someone Like Me, it is an outstanding description of his life with CP.

John Quinn shared a copy of his book Someone Like Me with an Academy Award winning actress

In some happy news, our #CPChatNow Co-Host now known as Jorge Oteiza, is back from Spain and enjoying some family time, overalls, and a new tattoo.

Picture of Jorge Orteiza with his grandma in overalls

Also, Jorge shared some positives and experiences from his trip to Spain:

Jorge's positives from Spain: knowing the metric system, friends, and an intact phone after dropping it in the train tracks. Rachel advised not doing that in Chicago

Next, this brings us to the announcement of our focus chat on aging with CP. Please join us tomorrow, Wednesday, May 31st at 8 EST.

Zach announcing our focus chat on aging

Finally, I would like to go back to the beginning of our chat for Rachel’s discussion about washing dishes being therapy to our Extend-The-Conversation-Question: What non-traditional forms of therapy have you used?

A picture of waves crashing on the shore with white #CPChatNow logo and the extend-the-question conversation: What non-traditional forms of therapy have you used?

Please join us tomorrow at 8 EST for our focus chat on CP and aging.

Tweet you soon!

-Devin

#CPChatNow Recap- 5-10-2017

This week’s #CPChatNow Twitter chat was a ride ranging conversation on current events in community member’s lives and topics unique to the disability community.  This is your Interim Co-Host, Devin Axtman, and I will be taking you on this week’s recap journey.

#CPChatNow regular, Dave Smith, started the conversation by posting a video about the Alinker, a walk-assisted device.  Members unanimously agreed it would be beneficial and preferable to using a walker:

#CPChatNow members Kate and Jocelyn returned and debated the proper pronunciation of Cerebral Palsy along with Rachel:

Kate also sparked much engaging conversation about having mild CP and not feeling like she fits in within the disability community:

Members also spoke of their fondness and desire to learn American Sign Language (ASL):

Finally, #CPChatNow Co-Host, Zachary Fenell, ended the chat on a happy note by announcing that he had recently taken a part time job at the local library:

Also, please join us on MAY 25th for our monthly Google Hangout (tip of the cap to Zach for backing up my errant throw):

Finally, this brings us to our Extend-The-Conversation question: Where are some areas the disability community can improve its inclusion of others?  Please share your answer in the comments and be sure to join us on Twitter every Wednesday at 8 Eastern Time.