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The Greatest Gift a Doctor Gave Me the Day of My Parkinson’s Diagnosis

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Let’s begin with the understanding no one likes bad news and there is rarely a great way to give someone news they do not want to hear. Some people, though, including doctors, have all the tact and care of a bucket of ice water to the face, and in my life, I have been hit with a few of those buckets.

What is Parkinson’s Disease?

“You have Parkinson’s disease,” is not a statement anyone wants to hear, but after my long journey getting to this point, it was almost a relief. For four years I had been searching, looking for answers. My body was slowly betraying me, and I was steadily declining. As I went to doctor after doctor, we kept finding things wrong with my health, but nothing that would explain my tremors and decline.

So, there I sat, in the office of my 2nd neurologist, desperately hoping for some answers and relief. What I got was anything but that. As he sat there, half-listening to me, he thumbed through my chart, looked up and said, “It is essential tremors, nothing to worry about, not much we can do.”

Frustrated, I left, unsure what to do. Maybe he was right, but it sure did not feel that way. As I continued to decline, we decided to give it one more try and went back to see him, only this time, my wife went with me. The same scene unfolded again, and once again I was blown off.

As he looked at my chart and paperwork, he said, “You listed he has trouble writing, but his writing looks fine.” I was stunned, and my wife quickly pointed out she had written it and wrote that very statement at the top of the page. He said, “Well, I guess we could do some medicine to see if that would help.” (He did give me some medicine which I later found out was not even effective at the dosage he gave me.)

Frustrated, my wife began to ask him to look at me and asked him to tell us if I looked well. Maybe he should run some scans or tests? He half-heartedly agreed, but nothing showed up, and he felt vindicated that he was right. And my steady decline continued. As hopelessness set in, I did not know what to do.

I knew in my heart things were not right, but he would not believe me. This first doctor was dismissing everything I was feeling and telling him — so sure of his diagnosis, unwilling to keep digging and think outside the box.

I poured out my frustration to my rheumatologist, who I had seen for almost 30 years, and he took the very simple step of recommending another doctor to me. This doctor could see something was wrong, and while he was trying some treatments, he quickly got me to a movement disorder specialist.

As I met with the specialist, he spent over an hour with me and his team, examining me, talking with me and my wife and really working to discover what was happening. After that hour, I heard those four little words that changed everything, but the appointment did not stop there. For the next 45 minutes, he simply talked with us, answered our questions and made sure we understood the information, the plan and the resources that were available to us.

The care he showed us as we got this news, I will never forget. The time he took as we processed this news together helped us understand the battle we were fighting and the hope we still had. I am sure there are many more things he could have been doing, but in that two-hour time frame, he made sure we felt like the most important patients in the world.

The news I had Parkinson’s was not easy to hear, but in many ways, it was easier to hear than when I was blown off and told I merely had essential tremors. Yes, the news was bad, but the doctor listened, cared and made sure I walked out of his office with some hope, and that might be the greatest gift that doctor could ever have given me on that day.

When we listen and when we care, as this doctor did, even bad news can be given with some hope — and hope, more than anything, is what we need to fight whatever chronic health issue we are battling.

Getty image by Pornpak Khunatorn

Originally published: April 6, 2021
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