Making My Voice Heard Among Parkinson's Doctors
There are a couple of things about being a 24-year-old girl that are fun. The endless confusion about your direction in life. The not so subtle jokes that it’s all downhill after 25. Even the constant debate about whether or not you really can afford to do laundry this week or should it wait next week after you get paid?
The not so fun part is not lacking the confidence and power in your voice to demand what you need. The thing that most people say only comes with time and experience from recognizing who you are as a woman. Having a sick parent sort of speeds up that process. The level of contained anger you learn to carry in your voice when speaking with apathetic office managers in useless doctors’ offices will carry you through life. Ah yes, how I do love to put a good nurse practitioner from a doctor’s office in their place.
Challenges that Parkinson's caregivers face
The issue with doctors, and mainly in Texas, is they refuse to be talked down to. Who the hell am I to be demanding decent service from my primary care physician?! It’s not like I went through 8+ years of schooling. And god forbid, doctors actually listen to their patients who know their body better than anyone.
Most times, getting the doctor on the phone or even in the patient room is difficult because I am typically dealing with the nurse practitioner, especially now that I am known as the incessant and unrelenting daughter, which, when it comes to my father’s healthcare, isn’t the worst thing to be known as.
And with my father having a myriad of health concerns, he sure has a whole team of healthcare professionals. He has so many doctors he could fill up a boardroom. But of course, if he could get them in a room and at a table that might mean they actually discuss his file and how they could actually help him instead of prescribing more medication.
What can doctor's do to help people with Parkinson's?
But here’s the thing with having Parkinson’s disease (plus a myriad of health concerns) - there’s not a lot doctors can really do besides prescribe more medication. There’s really nothing to even say to comfort the patient. It’s typically a prescription, a pat on the back and a shoulder shrug with a “Stay strong and don’t trip too much. You might split your lip open again.” What can they do? What can I expect?
The worst is when you’re at the beginning of taking care of your father and well, you hope for more than that. You want more for him, a solution, patient resources, ideas, even med school students taking to a whiteboard - SOMETHING. ANYTHING.
But the hard truth to accept being the daughter of a man with Parkinson’s disease is that nothing can really be done. Not from the doctor’s end. He can sit, and he can take notes, he can write down all the symptoms of Parkinson's and make us feel heard, but he can’t solve Parkinson’s, which is the thing right? The thing with Parkinson’s is that there’s no treating or curing it, just managing it. Because even with medication, symptoms don’t just disappear. And with my father’s case, they persist.
So when I speak with my grown-up woman CEO voice on the phone with that wretched office manager Kelly, I have to remember they are human too, and though they could care more, why should they? This is a job for them and asking for them to treat every patient like it’s their father is asking for far too much.
Until someone finds a cure for this disease, we must cross our fingers hoping the next fall doesn’t hurt too bad.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?