“Parkinson’s and Driving (From a Caregiver’s Perspective)” – Lecture Notes

“Parkinson’s and Driving (From a Caregiver’s Perspective)” – Lecture Notes

The Houston Area Parkinson’s Society (HAPS) hosted a day-long conference for caregivers in November. One of the lectures was presented by Christine Salinas, certified driver rehabilitation specialist in Houston. She discussed the biggest concerns around a person with Parkinson’s disease (PD) driving, as well as provided different techniques to evaluate if someone should continue driving or stop for their own safety. Although this conference was for caregivers, everyone in the PD community might be interested in these lecture notes. 

Christine began her talk by highlighting what driving means to people with illnesses: it allows for independence and quality of life by being able to attend social engagements, practicing self-care in the form of grocery shopping, and attending to medical necessities. It can be very difficult when that privilege is revoked. 

To know when someone should stop driving, Christine recommended looking for red flags like memory problems, dings or scratches on their car, other family members being unwilling to ride in the car when that person is driving, and crashes or near misses on the road. 

The speaker pointed out that the odds of failing an on-road driving test were more than 6 times greater for those with PD compared to controls. And the odds of crashing during a driving simulator test were more than 2.5 times greater for those with PD.

Christine demonstrated the different types of tests that physicians and driving instructors can use to verify if someone is capable to continue driving unassisted. While there are various tests, the most important thing for caregivers to know about a driving evaluation is a physician’s referral is required along with a valid driver’s license, and any recent eye or neurological test results. Expect 2.5 to 4 hours of clinical testing and behind the wheel testing. 

The last thing Christine wanted caregivers to know is that a Parkinson’s diagnosis does not automatically mean someone should stop driving. However, if a family member with PD refuses to stop after a doctor’s recommendation, the caregiver may need to hide their keys or disable their car to ensure their safety. And just because someone has lost their license or car, does not mean that their life ends. Ride-share services, cabs, public transportation, and friends/family can still take that person to where they need to go.

At this time, the lecture recordings and slides are unavailable to the public and conference attendees. 

Stanford Parkinson’s Community Outreach has a webpage with a lot of resources on driving with PD here.

I listened to this lecture and am sharing a summary below. 

– August Besser

“Parkinson’s and Driving (From a Caregiver’s Perspective)” – Lecture Notes

Conference Host: Houston Area Parkinson’s Society

Speaker: Christine Salinas, Certified Driver Rehabilitation Specialist, Houston, TX

November 14, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

What Does Driving Mean?

  • Productivity, work, volunteering, social engagement, hobbies, medical necessities (Doctor visits, pharmacy), self-care (grocery, grooming) = INDEPENDENCE and QUALITY OF LIFE
  • What can happen when the privilege is revoked?

Interesting Facts and Studies…

  • Nearly 1 million are living with Parkinson’s disease (PD) in the U.S. in 2020, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig’s disease (or Amyotrophic Lateral Sclerosis)
  • Approximately 60,000 Americans are diagnosed with PD each year
  • 1.2 million people in the U.S. with PD by 2030
  • The odds of failing an on-road driving test were more than 6 times greater for PD patients compared to controls, and the odds of crashing during a driving simulator test were more than 2.5 times greater, with overall driving ratings also lower for PD patients (Neurology Today, 2018).

What Are the Biggest Concerns?

  • Driving is a COMPLEX task! So, there are many factors that can interfere with safety.
  • Movement symptoms: tremors and dyskinesias (abnormal, involuntary movements), bradykinesia (slowness of movement), rigidity (stiffness of limbs and trunk), postural instability (impaired balance)
  • Cognitive changes: changes in executive function (thinking, judgement, problem solving), language changes, visuospatial processing, concentration and memory difficulties, etc.
  • Vision changes: contrast sensitivity, visual scanning
  • Medication side effects, etc.: peaks vs. valleys, poor sleep patterns = drowsiness, blurred vision, confusion, dizziness

What Can I Do?

  • Talk about the inevitable, if possible. Planning in advance makes a world of difference. 
  • Look for subtle changes. Be aware of where they “are.” Typical progression is not always the rule. In the 5 stages of PD, stages 2-3 are typically where red flags are raised.
  • Assist in PD management and maintenance: medications, diet and nutrition, exercise
  • Drive with them! Honest input from trusted family member/friend is very valuable. Look for: driving too slowly, ignoring traffic signs, difficulty executing turns, drifting in/out of their lane, bad parking job, forgetting to signal, etc.

When Do We Know It’s Time?

How Do We Prolong Independent Community Mobility?

  • Driving Rehabilitation Specialist: aid in identifying pertinent safety concerns and legal requirements. Administer and interpret clinical screenings and research-based testing
  • Screening – strength, range of motion, balance, reaction speed
  • Testing – visual processing speeds, visual perceptual skills, attention, memory and concentration, topographical orientation, etc.
  • Provide objective observations of behind the wheel performance. Drive in unfamiliar areas and familiar areas, residential, city, freeway/highway environments, day/night, rush hour
  • Is there a viable, SAFE solution?

Preparing for an Evaluation

  • What do you need? Physician’s referral, any recent eye exams, neuro testing, valid license or permit
  • What to expect: 2.5-4 hours of clinical and behind the wheel testing, possible follow up training, possible equipment recommendations, probable DPS visit (possible changes in renewal frequencies). (DPS is a Texas-specific term. The California equivalent is the DMV.) We have accessible vehicles outfitted with instructor brakes and adaptive equipment.

Clinical Evaluation

  • Medical/driving history
  • Eye examination
  • Cognitive/perceptual assessment
  • Physical assessment
  • Behind the wheel evaluation

Cognitive/Perceptual Assessment

  • Design copy
  • Letter cancellation: timed (90 seconds or less)
  • Trailmaking 2: timed (120 seconds or less)
  • Sign identification: timed (90 seconds or less)
  • Map reading
  • Motor free visual perceptual test – vertical and lateral orientation
  • Driver Performance Analysis System (DPAS)
  • The BCAT (cognitive screen)

Physical Assessment

  • Transfer level
  • Cars, trucks, minivans, full size vans
  • Each have a different option for transfers
  • Ability to load walker, stand unassisted, manual wheelchair, power wheelchair
  • Upper/lower extremity Manual Muscle Testing (MMT), range of motion, and endurance

Behind the Wheel Assessment

  • Simple tasks: stops/starts, ability to turn the steering wheel, ability to operate the static secondary controls (ignition, gear selector), ability to operate in-motion controls (turn signals)
  • Complex tasks: changing lanes under pressure, route planning/way finding (work, church, pharmacy, medical office, restaurants, etc.), follow 2-3 step directions

Driver Rehabilitation Role

  • Address/explain legalities and liabilities
  • Optimize driver safety: eliminating distractions (radio, cell phone, in-car conversation, etc.), self-restricting (nighttime, highways, rush hours), familiar routes, comfortable and frequented areas, GPS assist, good posture and stretching, assess “self-awareness” – refraining from driving when fatigued/if medication is wearing off/having a “bad day”
  • Additionally: identify adaptive equipment, propose formal restrictions, assist in advocating for licensure, assist in decision of driver retirement – surrendering license, identifying community/private resources for continuing roles and desires

Things to Remember

  • A Parkinson’s diagnosis, in itself, is not an automatic reason to stop driving
  • Discuss concerns with your loved one’s physician
  • Everyone is different: progression and deficits differ from person to person, comorbidities matter
  • Driving becomes an overlearned task. Foundational skills are honed over a lifetime and cannot always be sole indicators.

Refusal to Stop Driving…

  • Alerting their physician
  • Contacting your local DPS (in California, the DMV)
  • Hiding the car keys
  • Disabling the car
  • Selling or moving the car out of sight

Living Life After Driver Retirement

  • Life cannot stop! Continued mobility via alternative sources: family, church members, friends, taxi and ride sharing programs, public transportation, private companies, volunteer driver programs
  • Curb-to-curb, door-to-door, door-through-door
  • Key considerations: eligibility, affordability, accessibility