When you’re diagnosed with Parkinson’s disease, you find out who your real friends are. Some people pull away; others come much closer. I’ve had both types of friends. When I was first diagnosed I don’t know how I could have made it without my dear friend Jess. She took me to doctor’s appointments; she picked up the slack in our relationship without my saying anything.
Sometimes she would listen while I tried to make sense of what was happening to me, and at other times she sat quietly and I felt comfort in the silence. There were times when I actually fell asleep in the middle of a sentence, and she let me doze off and then reminded me of what I was talking about when I woke up a few minutes later. I couldn’t have asked any more from her.
Other people avoided me because they didn’t know how to deal with me. They were suddenly unavailable, and they didn’t return phone calls. I felt like a leper, at a time when I really needed to be around other people.
Michael had the same experience, especially with his friends in politics. Because of his outward symptoms, he became politically embarrassing—would people think he was drunk or using drugs? Was he simply strange? Michael learned just how shallow some of those people were, and it was a difficult time for him.
Ultimately, we must all accept our disease and give other people the opportunity to do so as well. If those around us don’t want to become better informed and can’t get past the outward symptoms of the disease, there is nothing we can do to make them accept us. In these cases, I have found it best to accept that the friendship is ending because the other person can’t make room in the relationship for the Parkinson’s disease and move forward. While this feels like a personal rejection, it’s really not about you at all. Some people simply don’t feel comfortable dealing with serious issues of illness and disease, and they can’t maintain the friendship any longer.
Now many of our friends have only known us as people with Parkinson’s, and some of our closest friends actually forget that we have the disease. There are times when we’re with a group and we become tired and need to rest, and we actually have to remind them that we need to slow down because of the Parkinson’s. We consider this a great compliment; we are accepted as peers first and people with Parkinson’s second. When this happens, we know we’re really living.
One of the challenges of accepting Parkinson’s involves maintaining the quality of our relationships once the diagnosis becomes public. “As soon as they knew, all my friends started treating me differently,” said Karen R. “I’d pull up in the driveway for a picnic, and everyone would rush up and say, ‘Are you feeling okay?’ ‘Do you want me to help carry anything?’ I’m still the same person; if I need help, I’ll ask.” It can be difficult to protect your independence from well-intentioned friends who want to help—a bit too much. It’s best, once again, to clearly communicate your feelings: “I appreciate your concern, but it isn’t necessary. Please know that I will ask for help if I need it.”