Real Life Stories from a Disabled Mom: Will botox help me beat baseline decline?

Posted by Kieran O'Brien Kern in Life After Paralysis on December 23, 2019 # Health, Lifestyle

Botox. The word evokes visions of smooth foreheads and migraine solutions. For spastic muscles, it can be a solution for less pain, greater flexibility and potentially increased mobility and functionality. Over 10 years ago I had an unsuccessful Botox experience, due to inconsistent support. That, coupled with a friend’s experience which landed her in a rehabilitation facility, made me hesitant. However, aging with cerebral palsy requires strategy, creativity, and chutzpah, moxie, you know, guts. While the brain injury that causes CP isn’t progressive, post impairment syndrome that is the wear and tear of a lifetime spent wearing down joints in different postures, energy expenditures, and pain, is.

I became a patient at the Weinberg CP Center at Columbia Presbyterian. This was the first time since I was a teenager that I had a doctor who actually understood cerebral palsy and in adults!

Dr. David P Roye, Jr. was amazing and respectful and had me do some diagnostics that revealed a little more than I was ready to process. I eventually had meetings with two surgeons who would have loved to open me up and fix XYZ. Except as a parent to two kids, I can’t be down for the count for any period of time. So, I respectfully declined.

Kieran KernI’m working with Suze-Elisha Principal, PT, DPT, OCS, a phenomenal therapist from Kessler Rehabilitation. She is the magical combination of intensity, humanity and location. She understands me and how I work (unless I’m falling apart, I go hard or go home) while having an office located within a five-minute scoot from my home. So light rain, wind or probably light snow won’t keep me from getting my sweat and strength on. For the days I can’t get in she’s given me an ever changing but workable circuit to do that I can accomplish in my kitchen that includes stretching and strength. When I started working with her this time last year I could barely transfer out of my wheels. Now in similar weather I can move. This is amazing. My goal this year is to minimize my winter baseline decline. After discussing it with her, I figured it was worth a shot and I booked an appointment with the Physiatry Group at Weinberg and we picked my calves, hamstrings and left arm. The best part of getting treated at a pediatrics practice is that the expertise comes with a large dose of warmth and humanity.

I’ve been getting shots in my knees and hips for a long time, but since Botox needles are guided by ultrasound and by electricity, I was nervous. My husband and my youngest child came with me that day. I can’t be mommy and anxious at the same time. The treatment room was bright and cheery. That cheeriness was rivaled by that spritely high energy (along with highly educated, skilled and well respected) Dr. Heakyung Kim. A ray of sunshine, she instilled confidence while also making me feel comfortable as soon as we met. Her team was on point and acted as one with warmth and humor. We found an additional trigger point in my back that had been the “thorn in my side” for a year.

Whether it’s the lifetime of talking to medical professionals, or my innate love of science, I have watched my procedures from endoscopies to the reflection of my last C-section. The ultrasound machine was positioned so I could see it and I only looked away when they used the electricity to make sure the needle was in the best spot. It wasn’t bad. For the most part, they kept me distracted. I was told that the medicine would start to dissolve within a day and within a month we’d hit the max effectiveness. On the drive home I started feeling dizzy and nauseous and would live on toast and tea for the next three days. But the next morning, my legs felt different, like they could breathe and the ever-present pain in my lower back was gone. I grabbed my walker for backup and kicked off my family’s morning. I’m not sure where this is going to take me, but I’d love to share it with you.

By guest writer Kieran O'Brien Kern