Wednesday, September 15, 2010

5 Things Every Person with Parkinson's Disease Does Not Need From You

Be honest. How do you respond to people who are not like you? Someone who drags her foot, is obese, is missing arm, is wheelchair-bound, as a speech impediment, has a wandering eye or whose face is pocked with acne scars. What do you say? How do you act?
As well-intentioned as we may be, often it is difficult to know what to say or do. Many times we are just silent, pretend there is nothing unusual, look away or just plain ignore people who are different. As my Parkinson's disease symptoms become more noticeable, so do the reactions of those who notice them. It has surprised me. But from this experience I am learning what it is like to be seen as "different".

So let me share one insider's view of what people with Parkinson's do not need from you. In the following blog I will tell you my answers to the more difficult question, "What every person with Parkinson's disease needs from you."

Pity. We do not need you to feel sorry for us.  We can feel sorry for ourselves, and sometimes do. But it does not really help to have anyone feeling sorry for you. Sympathy, while often well-intentioned, can simply communicate that we have a reason to feel sorry for ourselves.

Silence. Pretending there is nothing wrong, nothing different, is often like failing to recognize the elephant in the room. We know we have a tremor. We know that you know we have a tremor. We also know that sometimes it is difficult to talk about the obvious, for fear of drawing attention to it or making the other person feel uncomfortable. Silence is uncomfortable.

Ignorance is never bliss, it is just ignorance. Trying to communicate that you "understand" by trotting out a limited series of experiences with or facts about Parkinson's often puts the person with the disease in a position where he or she needs to correct your misapprehension or misinformation.  Careful with the stories.

False praise feels pretty good at first. But insincerity usually communicates a lack of true respect or caring. Many people who struggle with being different, whether because of a degenerative condition or some other imperfections, know when dishonest plaudits are given.

Paternalism or maternalism seeks to overprotect, to "baby" us, but in the process may erode our sense of worth and dignity. That is not to say that we do not need help sometimes (and some of us are too proud to ask for it), but it takes sensitivity to discern between help needed and help imposed.

Whether we like it or not, we all reflect our views of others as if we were mirrors. Our words may be deceptive, but our eyes, our expressions, our body language, and our actions can be as brazen as a billboard projecting what we really think and feel about the people we meet. Try as you might, any disguise is subject to wardrobe failure.

I can accept the fact that people struggle with how to respond to someone with Parkinson's, or any other
notably uncommon characteristic, appearance, sound or odour. But given the likelihood of this reoccurring countless times in a lifetime, you would think that we would learn how to cope with these situations better than slapping on a disingenuous smile and making excuses to pardon ourselves from the discomfort created by ourselves.


  1. I enjoyed this post very much. When I tell people I have Parkinson's, one of the most common responses is "my grandmother HAD Parkinson's." Of course, I focus on the "had," so my immediate response is always "well, how old is she?" And I learn then what I already knew - she is neither old nor young ... she isn't. Then I ask, "Well how old was she when she passed away?" The reply, "Oh, she was really old, 65." (Sixty-five is just an example, but almost everyone has thrown out a sixty something age.)

    Bob, do you think sixty something is old? I don't. And It bothers me that people think I will feel comfort in knowing their loved one lived into their 60's. I know I could die tomorrow, and I don't dwell on the when, but to be honest, I do, at times, dwell on the how. Parkinson's Disease scares me.

  2. KJ;

    PD scares us all at times, and it scares others who see the results of this struggle we face and do not know how to respond. Therefore we have two challenges. How do we conquer the fear of living with this? And how do we help others understand what we need (and don't need) in order to reduce their fears. We all have our fears. To me, life is, in part, learning to face them, and thereby encourage others to do likewise. We have the opportunity and responsibility to lead the way. It is our crucible to share (as you are doing). Keep at it, and thanks for your encouragement.


    PS. Sometimes 58 feels old, but more often I feel "I am an 18 year old trapped in a 58 year old body".

  3. my uncle has PD and it is very hard for my whole family but we care for him and love him with all our hearts.

  4. I too enjoyed the post. You were able to put your observations of a complex set of experiences into words too often left unspoken.

    At the APDA Young Onset Center, we work with people well into their 60s,70s, etc...some are newly diagnosed, others have had the disease for years. We are here to help people who are in need of education or support.

  5. I now know what NOT to do. So what response DO YOU WANT.