185 posts in the category “Parkinson’s Disease”

Driving with Parkinson’s disease: Safety considerations + turning over the keys

Posted 2 weeks ago by

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around.

Considerations for driving with PD + 7 questions to ask yourself

“You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.”

Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities.

There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive:

  • How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights?
  • Would I be putting my passenger (friend or loved one) at risk?
  • How fast is my reaction time? Could I safely avoid a surprise obstacle in the road?
  • Has anyone (friend or family member) commented negatively on my ability to drive?
  • Can I handle multiple activities at the same time (whether driving or not)?
  • Can I effectively and quickly turn the wheel or step on the brake with enough strength?
  • Do any of my medications cause side effects like sleepiness, dizziness, blurred vision, or confusion?

AAA Foundation for Traffic Safety published this self-assessment quiz and booklet for the general population of drivers ages 65+, but your own evaluation of your driving (and even your doctor’s assessment) may not capture all the true risks.

Driving assessments

PatientsLikeMe members have talked about how you can get a driving assessment to help you independently determine your driving abilities (click here to learn more about different types of professional driving assessments; note: these assessments are not covered by Medicare or private health insurance and you should ask if the results may be shared with your state and affect the status of your driver’s license).

Older drivers can also attend a (confidential) CarFit event, where a team of trained technicians and/or health professionals work with you to ensure you “fit” your vehicle properly for maximum comfort and safety.

Your community’s experiences

Join PatientsLikeMe or log in to see what members have said about the challenges of giving up their keys — as well as the potential bright side, such as no longer having to stress about driving (and associated costs, like car payments, insurance and gas) and — more importantly — possibly hurting someone.

Karl Robb (our blog partner), who has young-onset PD, has written about how he realized he gave up driving at age 30 because of worsening dyskinesia. “Relinquishing the keys to your car is a selfless act of caring and compassion,” he says in a piece for the Parkinson’s Foundation. “It shows that you care about yourself and those who may be put in harm’s way.”

Getting around town

Thinking about giving up or reducing your driving? Look into public transportation or free/reduced-cost transportation services in your area, and ask friends and family for rides (it can help to plan ahead and have a set calendar or day of each week for running errands with them).

“Turns out it is a good time to be a non-driver,” notes one member. “Surely you have heard of LYFT and Uber? They offer inexpensive rides in many US cities. maybe your family could set you up with one.” (See the growing list of cities that Lyft and Uber serve, as well as ever-expanding delivery services, like Instacart for groceries and medications/pharmacy goods.)

Also, explore these other transportation resources:

Join PatientsLikeMe and this PD forum discussion to add your thoughts, questions or concerns about driving. The community is here for you!

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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

Posted 4 weeks ago by

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician.

Out with the old

Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.”

When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home.

“He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.”

Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects.

“My husband didn’t like him,” Bernadette says of her old doctor. “I didn’t know any better. There were cues I should’ve picked up on long before the 14 years.”

Bernadette got a taste of other Parkinson’s care when she enrolled in PD telemedicine trials at the University of Rochester (U of R), where the staff is “amazing,” she says.

Bernadette says she was experiencing terrible dyskinesia, and a U of R neurologist mentioned that one of her treatments might be a factor (but didn’t suggest altering her treatment without consulting her doc).

She stopped taking the medication without telling her usual neurologist in advance. (“That was my one mistake,” she notes.) But she noticed a major drop in dyskinesia.

“When I told him I didn’t take [the drug] anymore — and why I didn’t take it anymore —he came unglued,” Bernadette says. “Nobody intimidates this little girl, but I was almost in tears.”

In with the new

Fortunately, Bernadette’s husband, Mark, attends doctor’s appointments with her and calmly stepped in when the doctor flipped out.

“Mark said, ‘You’re not going back there,’ and I said, ‘No, I gotta find another doctor,” she says.

After about a month, she landed a new neurologist at U of R. Although Rochester is about an hour and 15 minutes away, the change has been well worth it and the transition was “seamless” in terms of paperwork and insurance, Bernadette says. (Other patients aren’t always so fortunate, when it comes to insurance coverage — see one example here.)

Her new physician is a younger doctor who’s a movement disorder specialist (focused on PD), rather than a general neurologist (treating a wide range of neurological disorders).

“I was leery” at first, Bernadette says. “She wasn’t that old. She wasn’t out of school that long. My husband said, ‘No—take her! She’s young! She’s got fresh ideas!’ I never looked at it that way.”

These days, Bernadette’s doctor visits are pleasant from start to finish, she says, because the entire office staff is friendly and she has more of a dialogue with her doctor. She isn’t afraid to ask questions or discuss her symptoms and side effects.

“She knows what questions to ask someone with Parkinson’s,” Bernadette says of her new doc. “I tell everyone [with PD] that they need to go to a motion specialist.”

Bernadette continues to stay on top of PD research by reading books and articles (which she advises all patients to do), and no longer feels intimidated about raising new ideas, whether in-person or over the online patient portal (something her old doctor didn’t offer).

“I tell people, you have to do it yourself — you have to be an advocate for yourself,” Bernadette says.

Not every doctor and patient will click, she says, especially with such a varied disease as PD (sometimes called a “snowflake disease” because it can affect people so differently).

“You gotta go with your gut. I might like German shepherds and you might like chihuahuas — and there’s nothing wrong with that,” she says. “It’s a personal thing.”

Bernadette — an upbeat jokester — likes how her new doctor can roll with her sense of humor, but also knows when to take her seriously.

“I can be me,” she says.

How’s your relationship with your doctor? Have you ever noticed “red flags” in your care or had to change doctors? Join PatientsLikeMe today to jump into this conversation in the forum. Also, check out our Good Care Checklist, which PatientsLikeMe developed based on recent research with the Robert Wood Johnson Foundation on “good health care” from the patient perspective.

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