#CPChatNow Recap- 03-02-2022

Posted on March 9, 2022 by zacharyfenell

On Wednesday, March 2nd, 2022 participants in the cerebral palsy Twitter chat #CPChatNow enjoyed an important conversation. Join me, chat co-host Zachary Fenell, as I do my best to recap the discussion. Shall we get started?

Participants in #CPChatNow discuss bone issues and cerebral palsy.

The important conversation I referred to above revolved around cerebral palsy and aging. A topic raised by chat regular Chris when she shared a Science Direct article “Incidence of osteoarthritis, osteoporosis and inflammatory musculoskeletal diseases in adults with cerebral palsy: A population-based cohort study.” Chris explained the article remains relevant to her right now and she wondered if others had any experiences or thoughts on the matter.

Veronica chimed in saying she gets the early aging part of the article. Adding humidity makes her arthritis act up. Although, Veronica expressed uncertainty about whether her CP has anything to do with her arthritis and osteoporosis seeing how those conditions run in her family.

Chris responded, saying arthritis and osteoporosis also run in her family. She went on, curious if any of us were told growing up about bone issues and CP. My co-host Devin Axtman weighed in with his experiences.

Devin recounts what doctors told him or didn't tell him about problems he would have as an adult with CP.

Devin summarized his experiences saying, “I feel like I was basically told of no problems I would have as an adult with CP.” Continuing he described the attitude from medical professionals as “Just like ‘WELP we did all the regular surgeries. Good luck!'”

A sentiment which resonated with Chris. She stated “This was a big reason why I brought this up.” Challenging everyone to “Be aware. Do your research, ask questions, take calcium!” Chris then offered a follow-up the next day.

Chris shares with #CPChatNow an article from cpresource.org about preventive care for adults with cerebral palsy.

In her follow-up tweet Chris shared an article from cpresource.org about “Preventive Care for Adults with Cerebral Palsy.” Let us keep the preventive care discussion going. Answer for the week’s extend-the-conversation question, “What is something you do for preventive care?” Answer below in the “Comments.”

Afterwards, mark your calendars for #CPChatNow each and every Wednesday. The fun begins at 8pm ET.

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

-Zachary

This week's extend-the-conversation question asks, "What is something you do for preventive care?" — Answer below!

#CPChatNow Recap- 3-28-2018

Posted on April 3, 2018 by devinaxtman

#CPChatNow was especially fantastic last week! Longtime member, Rachel Folly, led a focus chat on the past year in members’ lives and developments for adults with CP.

Rachel introducing the chat topic

For her first question, Rachel asked if members had any CP related goals for the year and how they went. Zach and Linds talked about blogging: Zach and Linds talking about their goals of blogging. Linds stated she does not have a specific posting goal

Zach said he has accomplished a goal of increasing his reverse crunches:

Zach tweeting about increasing his reverse crunches from 37 to 43

Rachel then asked members about how their CP has changed as they have aged and what they are doing in response. Linds mentioned exercising by doing things like Zumba:

Rachel asked members if their CP had changed and what they were doing about it. Linds mentioned Zumba

Zach and I talked about increased back pain. Zach combats this by strategically placed pillows:

Zach and I talked about back pain. Zach said he combats back pain with pillows

Jen mentioned that she experiences pain, but sometimes feels guilty because it is moderate. Rachel tweeted that everyone’s CP is unique.

Jen worried about her moderate CP pain and Rachel tweeted that everyone's CP experience is different

The next question revolved around what members saw in the media about adults with CP in the past year and how it impacted them. Members largely answered with the story of an adult with CP being assaulted at a gas station. Additionally stories mentioning Zach and another person with CP completing a marathon arose.

Rachel asked about stories in the media about adults with CP. Members mainly shared stories about the adult with CP who was attacked at a gas station Rachel then asked what members would like to see change regarding CP next year. Members talked about a need for medical professionals to learn how to better manage CP:

Rachel asking what members want to see change with CP. Jen mentioned better medical management

Linds tweeted about wanting to continue to educate others that people with CP are first and foremost human, like anyone else.

Linds tweeted she will continue her education of normal being a myth

Rachel’s final question asked what members do to stay upbeat and focused on the long term. Linds stated she will do what she wants despite her health conditions:

Rachel asked what members do to stay upbeat. Linds stated she will continue to do what she wants to experience

Yasmin talked about the power of music and other activities in her life:

Yasmin tweeted about taking it day by day and importance of music, reading, and other activities

This brings us to our extend-the-conversation question. As we move past CP Awareness Month, what are your goals for the upcoming year in regards to CP? Extend the conversation graphic. Goal in blue letters with the O a bullseye. The Extend-The-Conversation Question As we move past CP Awareness Month, what are your goals for the upcoming year in regards to CP? is below the graphic Please share your answers in the comments!

Thanks for following along and tweet you later!

-Devin

#CPChatNow Recap- 1-24-2018

Posted on January 30, 2018 by devinaxtman

This past week in #CPChatNow members took a page from the Baseball Hall of Fame and inducted members into a mythical Cerebral Palsy Hall of Fame. Members also talked about parenting strategies for kids with CP and positive things that have happened this week. This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s recap. All aboard!

First, we’ll start the recap on a positive note. Hannah asked about a positive thing that has happened this week. Zach talked about a speaking engagement and Blemi talked about trying to find something positive everyday:

Hannah asked about positive this week.

Next, talk turned to a video with Zach Anner, a comedian with CP, where Zach offers his parenting advice for parents of children with CP.

Devin talked about the necessity of parents watching their kids struggle. Zach mentioned that it is probably hard for parents to see kids struggle and a balance required after Jen brought up struggles putting on her socks

Seth, Rachel, and Zach all agreed with the video’s message that it is important to treat children with CP like kids without CP:

Seth, Rachel, and Hannah agree with the video's assertion that kids with CP should be treated like other kids

Zach then took inspiration from the Baseball Hall of Fame’s announcement and asked members who they would like to see in a CP Hall of Fame. Members mentioned various people including Geri Jewell, Christopher Nolan, and Maysoon Zayid as well as things like #CPChatNow.

Hannah and Zach talking about #CPChatNow going in the CP Hall of Fame

Zach and Devin talking about their choices for the CP Hall of Fame

Members continue to discuss who they would like to see in the CP Hall of Fame

This brings us to our Extend-The-Conversation question: What tips do you have for parents of children with CP?

Extend-The-Conversation is at top in black text. The word tip is in black in the middle with a lightbulb over the letter I. What tips do you have for parents of children with disabilities? is below the word and tip with the multi-color #CPChatNow logo in the bottom left hand corner

Please answer in the comments and join us on Twitter at #CPChatNow every Wednesday at 8pm ET.

#CPChatNow Recap- 7-5-2017

Posted on July 11, 2017 by devinaxtman

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- Aging with Cerebral Palsy Focus Chat

Posted on June 9, 2017 by zacharyfenell

On Wednesday, May 31st, 2017 #CPChatNow presented a much anticipated focus chat about aging with cerebral palsy. Interim co-host Devin Axtman and I (co-host Zachary Fenell) alternated asking the questions you in our community suggested. Questions which triggered vibrant conversation. Some highlights follow below.

Now any credible chat on aging with cerebral palsy requires individuals willing to discuss their personal experiences. Therefore to start the Q & A we asked participants comfortable doing so to share their ages. Majority in the group fell between mid-20s and mid-30s. Although a few elder-statespeople ranging in age from 40 to 55 chimed in too. Meanwhile the youngest participant remains amidst her final year as a teenager.

Once we established our participants’ credibility, we delved into our more substantial questions. Our second question addressed what to expect aging with cerebral palsy and how to handle said expectations.

Rachel expressed concerns related to every day wear and tear to the body, symptoms possibly worsening, and even new symptoms. In my personal response to the question I mentioned lacking resources for adults with cerebral palsy.

Turned out others also related to using older braces. Alena‘s reply particularly revealed an ill-fated perception viewing new orthotics as a “kid thing.” Concentrating more towards items we can control, Maysoon Zayid offered up hope.

Through lifestyle changes like practicing yoga regularly and avoiding animal products, preservatives, dyes, and caffeine Maysoon explained that her CP symptoms lessened. What about you? Your turn to add to the conversation! Answer for the week’s extend-the-conversation question, “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?” Leave your response in the “Comments” section.

Maybe similar to Maysoon, you benefited thanks to yoga. Actually, similar to Maysoon and others considering multiple people praised yoga during our “Aging with Cerebral Palsy” focus chat.

#CPChatNow newcomer Grace Lapointe and a fellow #CPChatNow founding father John W. Quinn alike endorsed practicing yoga. All the praise left another newcomer Christine seeking advice for getting started.

Christine vocalized hesitation in getting started, nervous about toppling over. Participants rallied to encourage Christine. John and Maysoon both disclosed using assistance when first beginning yoga.

Alongside the yoga chatter, our set questions for the evening continued. Question three asked about others’ experiences and tips to make life easier. That led to Maysoon offering up an observation.

Similarly, John advised separating cerebral palsy from emerging health issues.

Next the conversation transitioned to the biggest surprise and frustration to accompany aging.

A couple re-occurring themes appeared when community members named the biggest surprise and frustration accompanying aging. Those themes including dwindling mobility and discomfort when trying to sleep. Ending the night optimistically, John recognized the potential boost ekoskeleton braces could offer the cerebral palsy community in the future.

Hopefully our “Aging with Cerebral Palsy” focus chat recap will give you a boost in dealing with CP in your future. Remember you may keep the conversation going by answering the week’s extend-the-conversation question.

“What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?”

Respond by commenting below. Expect Devin in the next few days with the recap for our June 7th Twitter chat. Until next time!

-Zachary

#CPChatNow

Online community for those with cerebral palsy!

Tag Archives: adults with cerebral palsy