Advocating for yourself as a patient can be hard, but it’s crucial

In 2015, during the early days of my Parkinson’s diagnosis, everything was a blur and I didn’t know where to turn. I had just started seeing a new physiotherapist whom I immediately liked and began to forge a connection with. One day, she said to me, “If you were my sister, I’d tell you that you need to go to Dr. _____.”

Those were strong words. My sister and I were very close, so I listened carefully. It was a turning point when the physiotherapist, a professional I trusted, gave me a clear directive: Find a new neurologist who specializes in movement disorders.

I don’t know about you, but I’m nonconfrontational and have difficulty advocating for myself. My family doctor hesitated to refer me because she said there was a two-year wait. The neurologist I had at the time, who was moving to a different city, wanted to refer me to another neurologist. I felt stuck in limbo.

One day, I was speaking to a friend about my neurologist dilemma. My friend offered excellent advice: “Christine,” she said, “this is the rest of your life. You need to like your doctor.”

That advice woke me up to the reality of having Parkinson’s. The rest of my life. It was worth fighting for.

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So, despite the long wait, I insisted on getting a referral to the neurologist of my choice. This process took about a year but was worth the effort and the wait. Since then, I’ve been thrilled with that decision, even if I did step on a few toes.

If you’re a fellow patient, who makes up your care team? I have a neurologist/movement disorders specialist, family doctor, and physiotherapist. I also count my boxing coaches as part of my team. I’ve taken a speech therapy course but don’t have a regular speech therapist. The same goes for a nutritionist. Perhaps you have an occupational therapist or a social worker. I’m working on getting a regular massage therapist, but I haven’t found the right person yet.

I had a little wake-up call the other day. I’ve had some hip pain recently, and I thought, “I should go to physiotherapy.” I’d been going to physiotherapy for years, but for some reason, I’d been avoiding it for the past year or so. Why? I had to take a good, hard look inside myself and come to the conclusion that I’d been avoiding it.

The reason was that about a year ago, I had to switch physiotherapists, and I just wasn’t connecting with the new one. Once again, I had to remind myself that this was for the rest of my life. It was worth the awkwardness of changing things up.

So now I’ve got a new physiotherapist who listens to me and has been incredibly understanding and supportive. I’m pleased with my decision to switch.

Over the years, a few friends and acquaintances have asked me to recommend a neurologist, and I always tell them about mine. Usually, the response is, “But there is a two-year waiting list.” I tell them it will be worth the wait, but only one person has followed through. She often tells me how happy she is with her decision to switch.

Having a suitable care team is worth the wait, effort, and sometimes the awkward moments. Remember, you are also an essential team member, and you, friend, are worth fighting for. Don’t be afraid to advocate for yourself and make changes if you feel they are necessary for your well-being.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.