Parkinson’s For One Day

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it always has, as a sandbox and outboard memory — the beginnings and middles of ideas, not always the polished ends.

For example:

One week ago I participated in an empathy exercise organized by Smart Patients: Parkinson’s For One Day.

My partner was Gretchen Church, co-founder of Movers & Shakers, a national Parkinson Disease support and advocacy organization. She and I talked for about an hour on Friday night and she started sharing pictures on Twitter, like this shot of her medications:

Pill bottles

I wore a 10-lb. weight around my right ankle and, at Gretchen’s suggestion, a high heel shoe on my right foot and a sneaker on my left. In this way I had to be aware of my gait and balance. Plus she assigned my two sons a job: to say “Freeze” randomly throughout the day. I would have to stop in my tracks for at least 30 seconds. This would mimic the challenge that people with Parkinson’s have, particularly when crossing the street.

Walking across a 4-lane street like a zombie (Gretchen’s word) was very scary. The distance had never looked so daunting:

Crosswalk

Once again I was humbled by the experience of following someone else’s footsteps, just as I’d felt when I shadowed Erin Moore, whose son Drew has cystic fibrosis. I captured that experience in a Storify and three essays: Cystic Fibrosis For One Day: Early Morning; It Gets Real; and A Brave Kid.

At the end of the day, I took off the 10-lb weight and marveled at my muscles’ uneven soreness. But, as Gretchen wrote, I was back to normal the next day and she still had Parkinson’s. I don’t think there was bitterness in that statement, but it was a reminder to bring that awareness into my every-day life.

How else might we bring empathy into our daily lives? Does technology play a role for you in pursuing a deeper understanding of illness and wellness? Please share your thoughts in the comments.

9 thoughts on “Parkinson’s For One Day

  1. First, it’s heartening to see that even the demands of your new job won’t keep you from participating in an empathy exercise. Parkinson’s patients everywhere should take great comfort in knowing that the CTO of the federal agency overseeing health is committed to walking in their shoes for a day, in this case as literally as possible.

    As you know from our conversations over the years, I believe strongly that technology can — and does — play a key role in helping us understand illness, especially in the case of chronic and complex conditions. Social networks such as Smart Patients, Inspire, and the many we manage at Alliance Health, reveal on a daily basis that empathy itself has unique healing properties. Pain management is not the exclusive domain of medications. Relief can come from someone who simply takes a few minutes to listen, acknowledge, understand and share their own experience. It appears that even a fleeting exchange of empathy can have a lasting impact.

    Those of us who are working to build and sustain these patient communities tend to promote them almost exclusively to the patient population they are designed to serve. Your post underscores the need for us to promote them as well to doctors, nurses, pharmacists, drug and medical device manufacturers and anyone else devoted to helping people navigate a chronic or complex condition. Few of us will ever truly know what it’s like to walk in Gretchen’s shoes, but we owe it to her to tap whatever tools and technologies we can to more clearly see the world through her eyes.

    • Thanks so much! I need to find a citation for a study I heard about — women in labor were randomized to have 1) a doula assisting them 2) a doula taking notes, there in the room, but not assisting or 3) no doula. Just having a sympathetic witness (group #2) helped women tolerate pain and nearly as few had to have interventions as the hands-on doula group (#1). If anyone knows about this study please share a link!

  2. Susannah,

    I wonder whether there might be room in this set of experiential writings for covering hospice and end of life in a similar way? I’m sure it’s hard to craft an analogous experience but I think that your empathetic perspective would be worthwhile.

  3. What a terrific exercise. I think it is so hard for any of us to understand what it might be like to go through the medical travails that people have. To understand how it impacts the core of your sense of being. Immersion can bring it home more than 1000 words. I regularly struggle with the dissonance between how I am “perceived” when i walk into a Drs office (or other places) and how I feel. I have none of the obvious flags of illness….regularly the comment is that you look great, but when one looks at my record it becomes clear. Only the Drs that have seen me for years “get it”. As I have gone through my own medical experience I have become more sensitive to others health issues, but even so, I catch myself not quite getting why someone says they are suffering. I even catch myself with…saying but you look fine…and then there is a moment of connection where you go ah ha…now I understand…let me give you a hug. Make the intangible real is how we can learn to empathize more. I think it to be a great exercise. I think it should be apart of medical training. I deal with the ortho world, and I always ask my Drs whether they had any surgery, and mostly they haven’t, one of my Drs broke his shoulder, and after that he expressed a very different sensitivity to my travails. “He really got it”, it was even just the way he looked at me, and the way he spoke about what it was like to go through extensive surgery and rehabilitation. It was that “ah ha” moment…thank you for all that you do to making it real.

    • Alex, I love that story about your doctor who “got it” after his own injury and surgery. “Make the intangible real” <-- how might we thread this into our lives?

  4. Your career change, thank goodness, does not prevent me from following your compelling commentaries. I watch my husband struggle each day coping with the enormous disability that Parkinson’s Disease has caused. Your method of trying to mimic one of the many areas that PD inflicts on people truly leaves me speechless. It’s really an incredible way to educate and enlighten people and could probably serve as an example when looking into many other health issues that we face. This comment box is way too small to express my thanks!

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