The Other Side Of Parkinson’s

The name of the other individual in this piece and the location of our meeting has been changed to protect his identity.

As still a smoker (yes, I know), I often find myself in a room with other smokers or, as we say, "lepers." It was meeting one such smoker that I began to understand the 2 sides of Parkinson’s.

It was the first time I had entered the room. Not far from where I sat, I saw a man struggling to light his cigarette. I immediately recognized the tremors in his hands. Since my tremors were not as strong, I offered to help. Once he had his relaxing first puff, I asked: "Parkinson’s?" He seemed relieved when I told him that we were both members of a club no one ever expected to join.

Difficulty accepting the diagnosis

We exchanged details of our lives. He had once been an international political consultant, having traveled the world. He had abandoned this position when he was diagnosed 3 years earlier.

We talked about symptoms and medications, the help we needed from others, and how we were both diabetic. He lived with his sister and said she was there when he needed her. I said my husband is my support. This was followed by one of those uncomfortable pauses.

He turned to me and asked: "Do you know one of the worst things about the tremors?" I was about to answer when he said: "being a man and having to stand at a urinal. I’ve ruined several pairs of shoes in the last few years. I wish I could laugh, but it reminds me I’m not the person I was."

This resonated with me. I told him about an incident that had occurred not long before. I was in the bathroom. My husband came running when he heard me scream: "I went to graduate school. I was a therapist. I managed a research department. I was president of a writing community. AND I JUST PEED ON THE FLOOR!"

So it was evident that we both had difficulty accepting our new lives. We agreed to meet again the next day.

Two sides to the story

I was waiting for him when his sister raced into the room. I watched as she quickly lit her cigarette, her eyes darting back and forth between the door and windows.

"You talked with my brother, Richard yesterday. He’s going to be here any moment. I just needed to be away from him. I suppose he told you that I helped him. I’ll bet he didn’t tell you how much. I help him dress. If I didn’t give him his meds, he would never take them. He won’t get a caregiver, even though it would be paid for. He won’t go to the doctor. He has had infected toes. He lost 2 of them. My husband and I can’t go out. My husband worries about my health; he’s been losing weight." These words rushed out in just a few seconds.

We both looked up when Richard entered the room. The consequences of these conversations were twofold. First, after talking with his sister, I found it challenging to listen to Richard’s complaints. He had not talked about being grateful for his sister’s help.

I am grateful

Second, I went to find my husband. I had to tell him how grateful I am for all he does for me. I had to ask him if it’s become too much of a burden. Does helping me keep him from taking part in activities he enjoys?

It was a conversation that I recommend everyone with Parkinson’s should have with those that get them through each day.