Wow. I can’t remember the last time my eyes burned after a long day of computer work. Thank you vision therapy and prism glasses!
But I’ll still never have perfectly aligned eyes.
Yesss! I can get out of bed in the morning without fearing that my left calf muscles will tear as soon as I step on the floor with my left foot. I’ve come so far in the last 18 months!
But my left calf will never be the same size as my right no matter what I do.
Omg! Botox has helped relax my ankle and toes so much. I can get a proper heel strike almost all the time now, and I can wear some styles of sandals without a backing!
But the Botox will continue damaging muscle tissue in my left calf. How much longer will I be able to have this level of flexibility and strength? If I stop Botox, my muscles will just tighten up again, but am I preventing my left calf from gaining strength by getting Botox?
These conflicting thoughts continuously run in my head whenever I think of how much my physical wellbeing has improved over the last 7 years. I think about how much of my own advocacy, researching, and time went into the quality of life I now have. I get angry thinking about the lack of support for adults with cerebral palsy (CP). I get angry when I think about how much time I spent in pain because doctors are not educated on how CP affects the adult body.
Below is a timeline of my medical/physical health journey over the past 7 years. I’m not sharing this timeline because I think people truly care about the number of times I went to PT; I’m sharing because I want to bring awareness to what adults with CP have to go through to receive appropriate and effective healthcare. Access to specialists and treatment for CP ends at 18. Starting at 18, people with CP are left to figure out what their body needs in a healthcare system that doesn’t seem to acknowledge that adults with CP exist. When I was first diagnosed with developmental delays at 18 months, someone helped coordinate all of the medical care I needed – PT, ST, OT, DT. They didn’t leave my parents to figure it out all on their own; In adulthood, it’s the complete opposite. I am left figuring out what treatments I need and which specialists to see. I am left to educate my doctors on what treatments are out there. My PCP had never heard of anyone getting Botox in their legs to reduce spasticity. No doctors, including my PTs, realized that the true cause of my hip pain was the lack of range of motion in my ankle.
When I started getting hip pain in 2019, I thought it would be a simple fix. A couple months of PT and I’d be good to go. Boy, was I WRONG. I didn’t know then that the hip pain was just the first chapter of a long journey toward a healthier and stronger body.
Summer/Fall 2020. I did 2 months of PT for left IT Band Syndrome. My IT band got better, but the hip pain returned once I went back to teaching in the school building in the fall of 2021.
Summer 2021. I began vision therapy to help treat and prevent constant eye strain.
Winter 2022. When the PT failed longterm, I turned to the podiatrist for new orthotics, thinking that would help. Again, the pain went on vacation, but it decided to return in the winter.
Summer 2023. I began to think that the hip pain was connected to my limited range of motion in my left ankle and that I needed to treat the spasticity to prevent the pain. So I decided to see a physiatrist about the most effective treatment for spasticity as an adult and how to prevent chronic hip pain. Welp, that wasn’t the solution because she simply told me the only thing I could do is increase my Baclofen dosage.
Fall 2023. Attempted PT for my hip pain and ankle spasticity. I tried a different office that seemed to be more knowledgeable about treating patients with neurological conditions. I only went to 2 appointments because of a month-long waitlist.
Spring 2024. Hip pain was nearly constant at this point, so I went back to the podiatrist, got new orthotics, and started PT – again. This time I had a diagnosis of hip bursitis. After 2 months of PT, I was discharged and no longer had pain.
Summer 2024–present. I began receiving allergy shots to lessen my seasonal allergy symptoms and to prevent chronic sinus infections. Receiving these shots has been life changing. Before I would be sick with severe allergies, a sinus infection, or a cold from September to April. Now that I’ve been on allergy shots for 2 years, I barely get sick and I have the energy to do things I enjoy all year.
Fall 2024. You guessed it – the hip pain returned. My left calf muscles were so tight that I couldn’t put my left foot flat on the floor in the morning. At this time, I stopped vision therapy after 3 years to focus more on treating my hip pain.
Along with the hip pain, I noticed that my spasticity was worse than it had ever been. I began thinking that as someone with spastic CP, I had to just accept that I would be in chronic pain for the rest of my life. But thankfully, I’m stubborn, so I didn’t give up just yet; I knew there was one treatment I hadn’t tried: Botox.
October 2024. I scheduled an appointment with a neurologist in hopes to receive Botox injections in my leg and get an updated MRI of my brain since my spasticity had worsened significantly. This was the turning point in my journey as things were about to improve over the next 18 months (and counting) — even more than I could’ve imagined.
January 2025. I received Botox injections in my left calf and foot for the first time since I was 4 years old.
February 2025. I began PT to maximize the benefits of the Botox injections. I continued PT for the next 10 months.
April 2025. 8 months after stopping vision therapy, I started getting headaches because of eye strain and visual confusion which would require me to close my eyes to “reset” my eyes.
June 2025. I went to a new optometrist who specializes in Binocular Vision Dysfunction (BVD) and received my first pair of prism glasses. Since getting prism glasses, I rarely get headaches and I still have some depth perception. Downside – my left eye turns WAY out whenever I’m not wearing my glasses.
January 2026. Discharged from PT! Skills I was able to do after 10 months of PT that I couldn’t before:
–Dorsiflex my left foot up to 10 degrees
–Better gait with consistent heel strike on left side
–Wear shoes with no backings for the first time in over 10 years
–Keep all 5 toes on my left foot on the ground while doing a lunge
–Balance on my left foot for up to 10 seconds
a-symmetry 