I drive my electric wheelchair to the registration desk of the clinic check-in window, low on sleep and fatigued from spasms the night before. The secretary greets me with a smile. I wonder if she notices the dark bags under my eyes. I’m here to see my physiatrist, a doctor who specializes in treating those with disabilities. She’s but one of the many members on my team for the treatment of my cerebral palsy; others range from orthopedic surgery to neurology and neurosurgery, pain management and psychology.

“Name?”

“Emma Carroll. C-A-R-R-O-L.L. 3/14/94.” I spell out my name for the umpteenth time and give my birthday as if on autopilot. “No changes in address or phone number.” She checks me in, hands me my intake paperwork, and I promptly take a seat in front of the large flat screen TV in the waiting room.

I look down and read the questions attached to the clipboard. “List the reason why you’re here today.” I scribble the words “Botox and phenol injections” as a Hail Mary of sorts, hoping my doctor will agree that it’s a good next step to relieve me from the dramatic loss of function the increase in muscle tone has caused. In truth, though, I’m in denial.

When my name is called, I go to my clinic room. After a few minutes, my doctor walks in. She asks me how I’m doing, and I’m honest. I have been absolutely terrible. The increased tightness in my legs has made it nearly impossible to weight bear without pain — even passively in my stander — and the muscle spasms in my hips and legs take my breath away.

I ask about the possibility of injections, knowing full well that we attempted aggressive Botox in the previous months without significant benefit, and the effect is temporary. At first, she agrees, but then pauses. “Can I examine you?”

I lay in the hospital bed in the corner of the room, and while she assesses my range of motion in all of my extremities, I can read the perplexity in her face. As she flexes my right leg — up, down, and then side to side — she reaffirms what I already knew to be true. “That is really tight.” I am lifted back into my wheelchair using the Hoyer lift on the wall, and then she says something I didn’t expect.

“I really think a Baclofen pump would be for the best. I’m in this for the long term.” Baclofen is a drug used almost exclusively in cerebral palsy, multiple sclerosis, and spinal cord injury patients for the treatment of spasticity. Although I take the medication orally — and at very high doses — unbeknownst to me, changes were happening “deep in the brain” in regards to my muscle tone. She explained that while Botox and phenol may work in the short term, it wasn’t a long term solution, and unfortunately, one with “ebbs and flows.” Without pump placement — which would allow a more effective administration of the drug directly into my spine, but is a complex procedure due to having to drill through my fused spine to access my spinal cord — I’d lose even more physical ability, have worsened chronic pain, and have even more instances of orthopedic deformity which would require additional surgery.

I sat there stunned, unable to form words. This is supposed to be a “non-progressive” disorder. What do you mean it will get worse? After all, we tried placing a pump when I was younger. I had two massive overdoses and nearly died.

While there’s a part of me that’s terrified to repeat pump placement due to what happened in the past, I know it’s necessary. At that moment, I realized maybe cerebral palsy isn’t “non-progressive” after all. I’ve already had multiple surgeries for my hip dysplasia, had nearly my entire spine — and parts of my pelvis — fused to stop the progression of neuromuscular scoliosis; as well as a procedure to reconstruct my foot and ankle due to clubfoot, among other surgeries. These comorbidities occurred both in childhood and in adulthood. Unfortunately, in terms of my care, I’m largely the exception, not the rule. My clinic operates as an extension of a children’s hospital — one of the world’s most renowned for the treatment of CP — and allows for continuity of care for adults. Unlike me, most patients lose their specialists once they reach the age of 18.

Considering that research says cerebral palsy patients experience premature aging, with many who are ambulatory losing their ability to walk as they get older, this is something we desperately need to re-evaluate. Too many adults with the condition are getting left behind. As someone who has a more severe form of CP, has never been able to walk and had multiple other health problems because of it, I shudder to think where I would be if I didn’t have an excellent multi-disciplinary team.

I truly believe my model of care should be the rule, not the exception, and that more research needs to be done in regards to the adult cerebral palsy population. More and more of us are surviving into adulthood than ever before, and rather than being brushed aside, it’s time all of us — not just a lucky few — get the care that we deserve.

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Author: Emma Carroll