#CPChatNow Recap- 04-20-2022

Each and every Wednesday those in the cerebral palsy (CP) community learn from each other thanks to the live Twitter chat #CPChatNow. Today I, chat co-host Zachary Fenell, will highlight the lessons learned during the chat Wednesday, April 20th, 2022. Welcome to your weekly recap!

Before I start recapping, I acknowledge I am late posting this. The reason for the tardiness I explained to my co-host Devin Axtman during our Twitter chat Wednesday, April 27th, 2022.

Zachary explains to his co-host Devin why the April 20th recap is running late.

Earlier in the week I finally released my new book Slow and Cerebral. The memoir details how I did not let my cerebral palsy stop me from becoming a marathoner. Spreading word about Slow and Cerebral‘s release led to the day getting away from me.

Enough dwelling on why I am late with the recap, though. Instead, let me actually get to recapping. Through general discussion Wednesday, April 20th the subject of medications arose.

#CPChatNow participants discuss their experiences with baclofen.

After I mentioned I take baclofen to relieve my spasticity, Casey asked me if I still find the medication helpful. Noting her body grew use to the medicine, causing her to need to take something else.

Casey would go on to name tizanidine as what she takes now. Another participant, Chris, recognized tizanidine as zanaflex. Chris recalled “I was on max oral baclofen, zanaflex AND Clonazepam. It barely put a dent in the spasticity and pain.” However, Chris eventually found relief with the baclofen pump. She described the pump as “magical.”

Altogether the medication conversation allowed us to learn about the different options which exist for managing spasticity. The learning continued when I asked a question about assistive equipment.

Zachary's question about assistive technology leads to Chris giving him a recommendation for orthotics.

Curious, I asked participants “Is there any piece of assistive equipment which you feel would improve your life?” My curiosity stemming from contemplation over purchasing an adult trike. The trike conversation parlayed into Chris mentioning her podiatrist. In response I said, “Speaking of podiatry, I need to get new inserts for my shoes.”

Refreshing my memory on a past recommendation, Chris commented, “I think I suggested Hanger Orthotics?” Indeed Chris had made that recommendation to the group in the past. Calling Hanger Clinic (who provide services nationally), “Great to work with.” Adding, “It was so awesome to be able to get shoes there, know they would work, and be accessible with insurance.”

What recommendations do you have for others with cerebral palsy? Keep the conversation going and answer for the extend-the-conversation question, “What company or product would you recommend to your peers with CP?”

Answer for the extend-the-conversation question, "What company or product would you recommend to your peers with CP?"
Answer in the “Comments.”

As you sort through any recommendations in the “Comments” section, please remember cerebral palsy’s varying impact on us. What works for somebody else might not work for you. If a suggestion intrigues you, check with a medical professional and discuss the option with them.

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

-Zachary

#CPChatNow Recap- 3/6/2022

This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. Members discussed walking, their strategy when leaving big events, and people without disabilities showing their privilege. All aboard!

First, Stephen brought up the exciting fact that he is walking again and the independence it allows him to feel. Zach and I discussed how mobility devices can also lead to feelings of independence.

stephen tweets he likes walking because it makes him feel independent, i tweeted it is nice, but a wheelchair can too depending on the distance, zach tweets this goes for any mobility device and pointed out a cane helped him become a marathoner

Chris tweeted about her goals to be more active:

chris asks stephen if he wants to get enough strength to walk or walk instead of roll, chris tweets she needs to be more active and might explore an adaptive bike program

Next, members discussed a common issue that people with CP and other issues face, deciding to leave events early to beat the crowd or stay later after people had left to allow the crowd to disperse.

zach asks if members leave early at big events to avoid crowds or stay until the end and wait for the crowd to disperse. veronica tweets it depends on how much she is enjoying the event, she sometimes leaves early and sometimes waits until the end.
blemi tweets she stays until the end because she would rather be slow than miss something. zach tweets he likes to be one of the last to leave at baseball games

Finally, Stephen brought up that he feels that people without disabilities do not always check their privilege. Chris and I discussed what we felt were examples of this during the pandemic.

stephen tweets he does not think abled people always check their privilege. chris tweeted they definitely don't and she discussed a friend that took her awhile to understand why chris is so concerned about covid. i tweeted there are many things i can say about the pandemic, but i did find it interesting during quarantine when people complained about things disabled people face daily

This brings us to our Extend-The-Conversation Question: What are some ways you feel people without disabilities have privilege? Please share your answers in the comments and join us tomorrow at 8 Eastern on #CPChatNow.

-Devin

#CPChatNow Recap- 03-30-2022

Participants in the weekly cerebral palsy Twitter chat #CPChatNow discussed various topics Wednesday, March 30th, 2022. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

An enthusiastic member of our community, Stephen, helped to get the conversation started.

Stephen asks #CPChatNow participants about their thoughts on the phrase "differently abled."
Chris gives her opinion on the "differently abled" phrase.

Stephen asked how people feel about the phrase “differently able.” I replied, saying I find attitudes more important than any one phrase. In particular noting, “You can use the ‘right’ words but have a patronizing attitude.” Personally, I do not have time for people who want to patronize me.

Meanwhile my co-host, Devin Axtman, called language “a personal thing.” A fact Chris also demonstrated in her answer to Stephen’s question. Chris explained she used differently able a long time ago, but now she prefers disabled. A preference she gained through experience over the years.

Though, along with age, comes other impact. A topic which arose as the chat continued March 30th.

Participants in #CPChatNow discuss cerebral palsy and premature aging.

This subject came to the surface after Stephen asked participants if they found CP harder to cope with when you were younger or older. Both Chris and Veronica mentioned cerebral palsy becoming more difficult to cope with as they grew older. Veronica specifically saying, “No one informed me all CP levels can affect aging though and I’d have to deal with premature aging.”

As the evening progressed, discussion drifted to other subjects. For example, challenging surfaces to walk on.

Devin asks participants what they think the hardest surface to walk on is.

Devin sparked the hardest surface to walk on subject by asking everyone what they think the hardest surface to walk on is. He himself said the ocean floor. Blemi answered saying cobblestone sidewalks. I replied saying sand. What do you think? Keep the conversation going and answer for the week’s extend-the-conversation question, “What do you think is the hardest surface to walk on?”

Answer below in the “Comments.” Then mark your calendar to join us each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

Answer for the week's extend-the-conversation question, "What do you think is the hardest surface to walk on?"
Answer below!