I am raising two teenagers 13 and 15, whom I expect to support for years to come. My elderly parents need assistance – some financial, some emotional – as they navigate their aging journeys. While these factors define me as classic sandwich generation, I’m finding that my health history adds some nuance that ups me to hoagie status.
I was diagnosed with epilepsy at age six, and for decades I had uncontrollable complex partial seizures. The seizures typically took me out for a few minutes and temporarily obliterated my awareness of the world, but they didn’t require medical attention. They were a nuisance, but when the 17th medication I tried didn’t control them, and the doctor suggested brain surgery, I refused. Living with seizures wasn’t as terrifying as the image of a scalpel cutting into my head.
I had my first child at age 40. When I became a parent, I worried that my loss of awareness during seizures jeopardized my children’s safety. In 2014, I accepted my neurologist’s advice and opted for a temporal lobectomy—a surgical excision of the seizure-triggering piece of my brain. My children were five and seven that summer. That option could have been great, except apparently a vein got stretched during the surgery, resulting in a subdural hematoma. Two months after my brain surgery, I had the biggest grand mal seizure I’d ever experienced, landing me in MGH’s ER. The neurosurgeon on call performed an emergency craniotomy. He used suction and irrigation to treat the hematoma, which saved my life.
That second invasive surgery took well over a year to recover from. The neurologists had to douse my body with anti-epileptic drugs, to prevent further seizures. The medication side effects – including dizziness, sleepiness, breath shortness and extreme thirst – were debilitating. Each time I experienced symptoms that felt like seizure precursors—neuropathy in my hands, tingling sensations on my face—I was petrified I would end up back in the ER. Eventually I learned that not every odd feeling in my body was seizure activity. Over time, the doctors adjusted my medication regimen to one that was tolerable and controlled my seizures. The process required, time, patience, and perseverance. In the meantime, I also kept up with the typical parent responsibilities, including planning kids’ birthday parties, coordinating babysitters’ schedules, and attending parent-teacher conferences. Years later, I am still guiding my children through typical teenage challenges, making sure their fun is safe, serving as their sounding board when tiffs with their peers arise.
In the throes of my sandwich generation responsibilities, the skills I honed and the tips I learned during my recovery are handy. My stepmother was diagnosed with Parkinson’s Disease over ten years ago, a degenerative neurological illness. Her decline has been slow but steady, with recent severe dips in her wellness. While epilepsy and Parkinson’s are quite different, I recognize the challenges that come with medication shifts, when a particular regimen doesn’t work, or causes intolerable side effects. Given our somewhat parallel tracts, I consider myself her “neuro-buddy”.
“You need to write down every symptom you’re experiencing and for how long and track it daily. Then share your records with your neurologist. The neurologist’s main goal is to treat your Parkinson’s symptoms. Medication side effects are secondary to her.” I had lived in a constant over-medicated daze during my post-craniotomy recovery days, but the doctors didn’t seem concerned, so long as the seizures stopped. “Also, remember that when it comes to brain disorders, the neurologists are guessing some of the time.”
“I know – I think that’s scary.” Christina said.
“You’re right, it is. But sometimes we have to take a leap of faith with the docs.” I urgently encouraged my stepmother to hire a social worker to help her track her symptoms. Based on my experience, I think she needs outside assistance to successfully complete the task.
I recalled my neurologist telling me my brain surgery was a success, even though it triggered a subdural hematoma. She was correct in that the first brain surgery put the kibosh on my complex partial seizures. But it also put me in a life-threatening situation. That was considered a “success”? While it’s true that the surgeries eventually were effective, the experience taught me that thorough holistic treatment is only possible when the patient steers the plan. “Never show up to the doctor’s appointments empty-handed,” I told my dear friend and special auntie, Roberta. At 79, she was recently diagnosed with mild cognitive impairment, including some memory loss. During a visit, she complained that her doctor didn’t warn her about a symptom she was experiencing that was likely related to her diagnosis.
“Always bring a written list of questions and a record of any symptoms you notice. Being a good patient is a mini-job in and of itself,” I told her. Even with my seizures under control for years, I still share a written record of symptoms with my neurologist during my annual visit. Like Christina, Roberta is another elder for whom I can be a “neuro-buddy.” Although I’m a good deal younger, I feel more sagacious and experienced when it comes to getting the best neurological care possible.