Thursday, October 21, 2010

What Every Person with Parkinson's Disease Needs From You.

Who has not been tongue-tied, felt the uncomfortable hush, struggled to find words and looked away when confronted with the news that a friend or family member was facing a difficult health threat. Whether a diagnosis with cancer, discovery of a tumor, loss of a limb, a heart attack or stroke, they all leave people fearful. And not just the patient. There is a veiled anxiety that seems to well up in those “exposed” to words like “Parkinson’s disease”. It is not that PD is contagious. But sometimes it has a similar affect. Entering the world of medical mysteries, unpronounceable polysyllabic nomenclature and the smell of antiseptic hospital rooms are scary to most.

Whenever I tell people I have Parkinson’s I watch carefully for the response. There is always discomfort. Sometimes it is veiled, but I can almost hear the unspoken question, “What do I say now?” What can one say to someone who has PD? I have previously shared what I believe we do not need. Now the harder question.

What does a person with PD need from others?

Hope. We all cling to it. But can you really give another person hope? How? Start with what gives you hope. Encouragement comes in different packages for different folks. Others give me hope by believing in my ability and resources to confront this ever-growing giant. Hope is a simple spark of inspiration, not a bonfire of assurances. It is the small things that give me hope.

Respect. It is not lost overnight, but the reality that the inevitable PD label will relegate me to a place of irrelevance and ineptitude is frightening. A sense of fading to invisible strikes at the core of self-worth. Yet the ill have much to contribute, just not in the same way as do the healthy. And if the reality discloses that indeed the light is dim in our eyes, remember us when we were at our best.

Patience is a rapidly vanishing virtue in our world impressed with better, faster, bigger and sooner. “Now” is the cry of a culture addicted to immediacy, preaching that hurrying is a prerequisite for survival. Giving people with PD the gift of patience is enormous. We normally feel guilty, or at least embarrassed, about being slower and more awkward than the norm.

Everyone needs a sense of purpose. More so people with Parkinson’s. It may not be performing world record accomplishments, but it might be as fulfilling as improving performance at Scrabble, taking an adult education course in photography or even writing a blog. But we all need to have something to aim for. We need to answer the daily question, “What gives me a sense of anticipation and makes me excited about the day?” You can help someone who is ailing by encouraging and supporting him or her to pursue a passion, march into each day with a purpose. My much loved and missed friends, Arnold and Helen Essler, despite being elderly and struggling with debilitating health issues, prayed daily for lists of people, me and each member of my family included. Priceless!

To Be Heard. Often, the loneliness of bearing up under a devastating disease can be more crippling than the disease itself. Pain, loss and the prospect of disability are isolating. Everyone finds it difficult to talk freely about the “elephant in the room”. We who have PD do not want to whine or be the focus of fussing, at least not most of the time. While, at the same time, those who do not understand the diagnosis are never quite sure how to carry on a conversation. Glib “fix it” conclusions like, “It could be worse” are dialogue killers. So, when confronted with the awkward truth of a friend’s diagnosis, don’t try and come up with some home cooked solution or some insightful remark.  Just listen to understand. Ask open questions like, “How do you feel about that?” or “What does all that mean for you?”  This is ‘active listening’ that gives the best opportunity to understand.

People with Parkinson’s are no different than most others facing the expanding challenges of aging and living well. We all need others to be there for us. We all need to know somebody cares.


  1. Very good blog Bob! Thanks for sharing :)

    It was good to see you when I was in Vancouver! Hopefully I can come by again for dinner and have some more great discussions :)

  2. Thanks.
    Reading Still Alice a novel from the voice of a Harvard Professor just diagnosed with alzheimer's. She says something very much like what you said in the beginning. She wondered if her husband would ever look at her the same every again, as her brain was part of what he loved about her. Then she talked about retiring from teaching and she wondered what she was apart from being a Harvard professor. It's a good book to see what is going on in a patient's mind - JUST LIKE YOUR BLOG is good too. I've learned so much from reading it, and I have such a great respect for you and your attitude. Thanks for sharing.