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.
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.
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.
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?”
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!