Driving — A Parkinson’s Dilemma

Late in his life, my dad was a terrible driver. His eyesight was bad. He didn’t look or signal before changing lanes. When he backed out of the driveway, it was up to other drivers to get out of his way.

I once sat in the passenger seat as he drove on an interstate highway in first gear.

My mom pretended not to notice. My sister and I raised the issue a few times in conversation, but Dad insisted –evidence to the contrary — that his driving skills were fine. We didn’t have the guts to fight him on it. He had a few accidents during his final years, and I am thankful he did not kill himself or someone else.

When he died — of natural causes, I hasten to point out — his hearse backed into a pole in the funeral home parking lot. My sister and I believe our father had decided to take the wheel one last time.

Apparently, our experience with Dad is fairly common. According to Paul Wynn of Brain & Life Magazine:

The Journal of the American Geriatrics Society reported last year on a study involving 635 older adults experiencing cognitive problems: More than half of them (360) were still driving, while over a third of the subjects’ caregivers (36 percent) expressed concerns about the older people’s driving abilities.

“The study findings were not particularly surprising because we suspected that people who shouldn’t be on the road continue to drive,” says study co-author Lewis Morgenstern, MD, FAAN, professor of neurology, neurosurgery, and emergency medicine at the University of Michigan School of Public Health in Ann Arbor. “We hope the study raises awareness about this issue and encourages families with concerns to have their loved ones undergo assessments to determine whether it is still safe for them to drive.”

The Parkinson’s Foundation has this to say:

Driving is a complex skill. Parkinson’s-related physical, emotional and mental changes may affect your ability to drive safely.

  • Parkinson’s can cause your arms, hands or legs to shake even when you are relaxed. PD can also make it harder for you to keep your balance or start to move when you have been still.
  • You may not be able to:
    • React quickly to a road hazard.
    • Turn the steering wheel, push down on the gas pedal or brake as quickly as you may need or with precision.
  • Depth perception can affect your ability to change lanes, park, etc.
  • Changes to cognition may affect your ability to process all the complex actions that occur in order to drive safely.

As an over-60 adult with Parkinson’s, I think about this every time I get behind the wheel. Do I still have the reflexes, judgment, and cognition to operate a motor vehicle safely?

Will I know when I no longer do?

I’ve taken three steps to stay on the safe side of the line:

  1. At least every couple of weeks, my wife sits in the passenger seat as I drive, paying close attention to what I’m doing. When we return home, we talk about anything she’s noticed. So far, so good.
  2. I’ve signed a Family Driving Contract, agreeing to follow her advice, and to stop or restrict my driving if she deems it necessary. The one we used came from the Greater Wisconsin Agency on Aging Resources. AAA also has a version.
  3. I recently installed the AARP SafeTrip App on my iPhone. According to the publisher.

AARP SafeTrip gathers data from your smartphone’s position and inertial sensors and measures driving quality based on:

  • Hard acceleration
  • Hard braking
  • Hard cornering
  • Speeding
  • Phone usage while driving

I’ve had the SafeTrip app for a couple of weeks, and appreciate an ostensibly unbiased observer in the car with me, pointing out areas where I can improve. Also, unlike other driver-monitoring apps, AARP promises not to send the data to a driver’s insurance company.

According to the SafeTrip dashboard, I am occasionally guilty of hard braking and have been known to drive over the speed limit. (In my defense, one of the “hard braking” instances involved a pedestrian who stepped out from between two parked cars. My other option would have been to run her over and keep going. The app says I can tell it to the judge.)

As I get older, I find myself more sympathetic to my father’s desire to keep driving in spite of his greatly-diminished skills. Although I live in a multiple-bus-line neighborhood and have access to Lyft and Uber, losing my driving privileges would make it much more difficult to move around the city the way I’m accustomed to move.

Having said that, I recognize that nobody outruns Father Time, and my Parkinson’s may speed up the clock. When it’s time to hand over the keys, I intend to hand them over without argument or complaint.

UPDATE ON THE NATIONAL PLAN TO END PARKINSON’S ACT

President Biden signed the legislation into law on July 2. Thank you to the activisits, lobbyists, scientists, and just plain folks who pushed for years to make this happen. Thanks to the Representatives and Senators who voted for it, and to President Biden for signing it during a particularly tumultuous time in the White House.

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BONUS FOR THOSE WHO READ TO THE BOTTOM

“We Will Rock You” Lipsynced By Cats

If “You’ve Got to Fight For Your Right to Party” were performed by AC/DC

8 responses to “Driving — A Parkinson’s Dilemma”

  1. Steve Fawthrop Avatar
    Steve Fawthrop

    Phil,

    Thanks for sharing both your story and some of the resources you are using to monitor. I am sharing those with someone who is dealing with her dad as a driver at age 86, so more a general challenge in her case. Specific to Parkinsons, I can understand the caution. My mom was diagnosed and lived with it for the last 8 years of her life. It was all a progression. The biggest caution day-to-day, whether around the house (my boyhood home was older (1908) with two stories and a basement) is the challenge of general balance and with the brain not sending and receiving the right signal always, a “lock up” that may precipitate a spill or, in the case of driving, an inability to react properly. That is critical since you are moving faster in the car and putting others at risk. All the best.-Steve Fawthrop

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    1. shakinstreet.com Avatar

      Thanks for the insight, Steve. I have not yet started experiencing either balance or “freezing” issues. While I’m working hard to delay the day they arrive, there is little doubt that those challenges are in my future.

      According to the AARP app, my driving score is in the “B+” range. I could afford to slow down, and am working on that (interestingly, several reviewers of the SafeTrip claim that the speed limit data the app uses is sometimes incorrect, but I’m working on slowing down anyway.) If my skills start to slip, that should show up in my scores, and I’ll have some decisions to make.

      Hoping the resources are useful for your friend and her dad.

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  2. mmmeow60 Avatar

    Love the open communication and acceptance….and the cats! My husband walked in and said, Did he teach his cats to do that? 🙈

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    1. shakinstreet.com Avatar

      All available evidence indicates my cats are untrainable.

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      1. mmmeow60 Avatar

        🤣

        Get Outlook for Androidhttps://aka.ms/AAb9ysg

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  3. gfeder Avatar
    gfeder

    What a responsible soul you are, Phil! Cannot tell you how much I admire how you are approaching your PD, and how open you are being about the issues and how you are dealing with them!

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    1. shakinstreet.com Avatar

      Thanks, Gwen — I am not often described as “responsible.” I’ll take it.

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  4. […] a way to monitor my driving skills, I have recently been using the AARP SafeTrip iPhone app. When I’m behind the wheel, the app employs whizbang smartphone technology to grade my speed, […]

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I’m Phil Bernstein

I was diagnosed with Parkinson’s Disease on May 25, 2023. At the time, I was only vaguely aware of Parkinson’s — primarily from articles in People about Michael J. Fox. And I didn’t know anyone with the disease.

Now, I know a lot more about the illness, and I’ve joined the Parkinson’s community in my hometown of Portland, Oregon.

I’ve found that writing helps me think through challenges, and this illness definitely qualifies as a challenge. I’ve started Shakin’ Street to help me think through the various obstacles, tools, and resources that a newly-diagnosed Parkinson’s patient encounters along the way.

I hope some of these posts help you address and tackle your own challenges.

Let’s connect