The Patient Is the Expert — It’s the Doctor’s Order

Those of us who live with Parkinson’s disease are probably aware that it is a progressive disease of the nervous system. Because it affects the nervous system, it also potentially could affect every part of the body. But just because the potential exists doesn’t mean it will do so.  

We who have Parkinson’s disease are also most likely aware that it can, and does, affect each of us differently. This can make it harder to diagnosis, which in turn makes it more difficult to effectively treat.

The other day, I received a note from one of my readers asking about internal tremors, which one study described as “a feeling of tremor inside the chest, abdomen, arms, or legs that cannot be seen.” The reader asked if I believed that internal tremors could be linked to Parkinson’s disease. I told her yes. Three different physicians have told her the opposite, and one was even a movement disorder specialist (MDS).

Internal tremors were among my first symptoms of Parkinson’s, although I didn’t know it at the time. Later, my MDS confirmed the symptom as one of the first I would experience on my journey with Parkinson’s.

More than once, I have heard doctors say that the patient with the disease is the expert. I was skeptical when I first heard this. However, after time, I began to understand the statement and recognize the sense to it. After all, we live with the disease day in and day out. We understand. We are the experts.

When I was in labor with my oldest child, I vividly recall my doctor’s poor bedside manner. My blood pressure would skyrocket just by her entering the room. After one particularly difficult exam, as she removed her gloves, I asked if she ever had any children. “No,” she bluntly replied. “I didn’t think so,” I said.

It takes personal experiences to create understanding, and understanding goes hand in hand with wisdom.

If I were to poll 100 people with the question, “How would you define Parkinson’s disease?” I’m certain nearly all would reply, “Someone who shakes all the time.” But not everyone with Parkinson’s disease has a tremor, and a tremor isn’t necessarily proof of Parkinson’s, according to the American Parkinson Disease Association.  

Just because someone may not have the traditional symptoms of Parkinson’s doesn’t mean it doesn’t exist, or that they aren’t fighting this disease.

If this all sounds familiar, keep striving to find a doctor who will work closely with you and really listen to you. After all, we’re the experts, right?   

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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.