The Right Neurologist Battle
One thing I did when I took over managing my father’s health care providers is make sure that the doctors treating him not only understand his needs and his disease, but were also not the type of doctors my father would typically consider friends.
Choosing a doctor
Most of my father’s life, he has managed his own healthcare. He took his insulin on time, he made sure not to eat too much sugar and most importantly, he chose his own doctors.
As we grew up and worked in an immigrant community, this meant most of his doctors were Indian immigrant men who operated throughout life just like my father. While he didn’t always receive the best care, he felt happy going to the doctor and connecting with them over politics, religion, or simply, life as an immigrant man.
The care he received was a choice he made with a sound mind, but I always wished he would choose the doctors not based on how much he enjoyed their presence but because they gave him the best care possible.
Now that I am in charge of his healthcare team, I can’t consciously make that same mistake. When my father moved to Texas, he chose his care team again, and again they were all incompetent doctors who were not truly capable of handling my father’s health issues.
Advocating for your health
I can’t help but feel unimaginable anger at the neurologist my father had first chosen who failed to diagnose him with Parkinson’s disease (PD) until 2 years later.
The most important thing I have learned from navigating my father’s healthcare, my mother’s healthcare, and my own healthcare is that patients have to fight for themselves. They have to advocate for their own health and their rights as a human.
People have to demand the right tests and demand the right level of attention to their health. Otherwise, you’ll just be another patient that they let get worse until there is no turning back. And I wasn’t going to let this neurologist do that to my father. So I changed neurologists.
Finding a qualified neurologist
I found a neurologist in Dallas that was not only highly recommended, but highly specialized in movement disorders. This doctor has written multiple research papers on treatment and care for PD patients.
This doctor is young, smart and passionate about helping people with PD. He wants to help regulate my father’s routine and is responsive to all our dumb questions.
Upon receiving the dementia diagnosis from the new neurologist’s office, my father insisted on switching back to his old neurologist - the one who couldn’t be bothered to perform a 20 minute cognitive exam but only did so because I wouldn’t stop calling and hounding the nurses.
And even after that, he didn’t take the time to review my father’s medications. The dosage, the frequency, the need to take 1 hour before eating and 1 hour after eating. I am still fighting him on it but there’s going to be a time in the near future where I can’t fight him anymore.
The best care possible
I don’t want to be the bad guy with my father - the daughter who controls him and doesn’t let him live his life as he wishes. But I can’t risk his quality of life and health. I want him to have the best care possible - even if he doesn’t.
Thoroughness and attention to detail is not supposed to be a luxury or a privilege when it comes to our healthcare. Become your own advocate or have someone in your family be your advocate.
Push for that extra test and make sure that someone is truly working towards bettering your health because they believe in the power of medicine and not worried about how to bill insurance.
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