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When you are treated for stiff-person syndrome, there are several factors to consider. You may still be able to physically drive, but if you are experiencing seizures and spasms, you may not be safe to drive.
If you are on medications including benzodiazepines, antiseizure, muscle relaxants, or pain medication, you have to discuss with your physician whether you should be driving.
Most medicines have labels that warn against driving and operating heavy machinery. Patients rarely heed this warning and ignore the side effects of their medication.
Benzodiazepines and opioids are high-risk, but are less dangerous when being used consistently as prescribed than when a person is abusing these drugs recreationally. Stiff-person patients may be at a higher risk of driving without the necessary amount of their prescription on board to prevent startle and spasm.
You could be at risk for DUI. The standards for how much of a drug can be in someone’s system without causing impairment are not yet set. The responding officer must consider the driver's behavior (weaving, performing reckless maneuvers, failing to observe street signs, or exhibiting slow reactions to road hazards or events) combined with evidence that the person had a legal drug in their system that has known, potentially impairing side effects.
Discuss your driving capabilities with the physician prescribing your medications.
No adult wants to give up the independence offered by their ability to transport themselves where they want to go, when they want to go there. Here are some tips on deciding whether your physical performance makes it safe for you to be behind the wheel.
1. Have you had seizures in the last year? State laws vary but have some form of restriction requiring you to be seizure free for a specific period of time (six months to three years) and submit a physician's evaluation of your ability to drive safely.
2. Is your startle and spasm reaction controlled well enough by medication that it will not be a factor while driving in traffic? Be brutally honest with yourself.
3. Diminished strength, coordination, and flexibility can impact your ability to successfully maneuver your vehicle.
Do you have trouble:
w Rotating your torso to look over your shoulder to change lanes or to back up or park?
w Turning your head to the left and right, or up and down, to check for traffic or look in the mirrors and at the controls?
w Can you move your foot from the gas to the brake pedal or clutch easily and quickly? Are you two-footing it?
w Can you raise your arms above shoulder height? Do your arms become fatigued easily?
w Can you grip the wheel without spasms or locking?
w Does pain or fatigue keep you from going up or down a flight of stairs? Leg, knee, and hip fatigue, cramps, or pain can affect your ability to navigate the pedals for a long period of time.
w Are you able to get in and out of the vehicle without assistance?
w Do you rely on mobility aids? Can you manage them on your own?
4. Are you awake and alert enough? If your medication makes you sleepy, don’t get behind the wheel.
Driving requires you to pay attention to multiple visual and audio inputs. You need to be able to react quickly to situations that arise without warning. If you are frightened by something (an animal, pedestrian, or bicycle running in front of you, a person cutting you off, having to slam on your brakes unexpectedly), will you still be able to remain calm or will you go into spasm?
Mental fog can cause you to get lost or be unable to think your way through it if you take a wrong turn or are forced into a detour.
5. How quick is your reaction time? It takes milliseconds for the brain to send signals to your limbs, but if your processes are slowed by medication, you may not be able to respond fast enough.
6. Can you see well enough? Blurred vision, double vision, neck restrictions, lid lag, exophthalmos, nystagmus, night blindness, and astigmatism can all affect your ability to see properly when driving, especially in low-light, at nighttime, or during inclement weather.
If you have to drive, there are things you can do to limit the risks.
w A vehicle with an automatic transmission is easier for you to drive than a manual shift transmission.
w Power steering and power brakes are easier to operate.
w Aim the side mirrors, or consider larger/modified mirrors, to help you visualize your blind spot.
w Limit passenger conversation, electronic distractions, and sound from the car stereo. Open windows can reduce your ability to hear.
w Plan your route ahead of time. Consider having a GPS unit available in case you take a wrong turn or have to navigate a detour.
w Stick to well-known roads.
w Do not drive during severe road conditions: storms, snow, ice, flooding, fog. Drive only during daylight hours, if possible. Avoid rush hour.
w Left turns are harder to negotiate than right turns. Three right turns make a left.
w Keep a greater distance between you and the car ahead of you. The two-second rule should become the four or six second rule.
w You may prefer to be the one behind the wheel, but assume the passenger seat whenever possible.
w Listen when loved ones express concern about your driving.
w You should not mix alcohol with your medications. Never mix alcohol with your driving.
w If you are pulled over, even if you don’t get a ticket, consider that a wake-up call. Don’t volunteer that you are on prescription medications, but if you are tested for DUI or asked, be able to present copies of your prescriptions.
w Whether you are twenty or sixty, if it is time to give up the keys, you must do so for your safety - and that of everyone else on the road. Just as a person does not have the right to risk other people’s lives by driving under the influence, you do not have the right to risk other people’s lives because you refuse to admit limitations.
w Look into alternative modes of transportation in your area before you need them. Try out some of the options before you have to rely on them.
w Does your area offer public transport such as subways, trams, or buses?
w Does your area have a Dial-A-Ride or local shuttle services you can request? It may be slower than you’d like, but you’ll get there.
w Are cabs and taxis available? Ask if they have special rates for disabled people.
w Are there shuttle buses for disabled and elderly residents to get to doctors’ appointments? Doctor appointment times are rarely negotiable. They have to become a priority.
w Ask a friend or neighbor for help. You might be surprised how many people are willing to lend a hand. Don’t abuse their generosity. Offer to reimburse them for gas.
w Check with your place of worship to see if they have shuttle buses. Many do.
If you are the caregiver or loved one of a patient with stiff-person syndrome, remember this is a very sensitive issue. Telling your loved one it is time to turn in the keys needs to be handled delicately. It is important that you approach it as a team problem and not become a parent ordering a child to obey.
Loving support is crucial in helping them make this decision without making them feel stripped of power. Help them find ways to access transportation that does not leave them a prisoner in the home or at the mercy of busy family members who have a hard time fitting in assistance with transportation.
For caregivers, it might be quicker and easier for you to do things for them, but give them the courtesy of participating in things that affect them like grocery shopping.
Make sure they have transportation to things they’d like to do, even if they aren’t things you want to do.
1. Guide for assessment of drivers with physical limitations, medications, etc.
2. Car-Fit is an educational program that offers older adults the opportunity to check how well their personal vehicles "fit" them. It provides information and materials on community-specific resources that could enhance their safety as drivers, and/or increase their mobility in the community.
3. Drive Sharp is an online brain training program that is clinically proven to help drivers see more, react faster, and cut crash risk by up to 50%. https://www.drivesharp.com/
4. Association for Driver Rehabilitation supports professionals working in the field of driver education / driver training and transportation equipment modifications for persons with disabilities. http://aded.net
5. Occupational therapy practitioners help individuals make a smoother transition from driving to using other forms of transportation. In doing so, they help people maintain their autonomy, independence, and sense of worth. www.aota.org/olderdriver
6. Double Decision Road Tour uses technology, called UFOV™, a visual training and assessment technology that has been the subject of numerous studies, many funded by the National Institutes of Health.
7. AAA Foundation Drivers 65+ Driving Quiz
8. AAA Roadwise Review is a free screening tool developed by AAA to help seniors measure certain mental and physical abilities important for safe driving.
9. AARP Safe Driver Course
10. Find a Driving Specialist (Occupational Therapy) http://myaota.aota.org/driver_search/index.aspx
11. Locate a local agency on aging. www.eldercare.gov
12. The ARC offers resources for people with intellectual and developmental disabilities. Policy-issues/transportation