¶ Introduction
Getting into and out of a vehicle, as well as driving it, poses certain challenges for those with advanced ALS. Adaptive equipment, and eventually the use of an accessible vehicle (wheelchair van) can help maintain mobility and independence.
¶ Vehicle Characteristics
¶ Doors
Hinged doors (i.e. "normal" doors) offer very little space for an assistant to help the patient get into or out of the vehicle, especially when the doors cannot be opened all of the way.
Sliding doors provide the largest workspace for the individual and an assistant to complete a transfer.
Gullwing doors must be able to open high enough to be out of the way while completing a transfer.
¶ Hip height
Hip height is a measurement used by the automotive industry to refer to the distance between the ground and the hip bone of the occupant while seated in the seat.
Sports car with very low hip height. The car itself is quite low, and the seat bottom is very close to the floor of the car.
Vehicles with a hip height that is very close to the hip height of the individual when they are standing are the easiest to get in and out of.
Vehicles with a very high hip height require the use of running boards or a footstep to get into. Use of such devices requires significant strength in the leg and hip extensor muscles. There is a higher risk of falling. The individual should seek assistance from others to maintain sufficient points of contact and stabilization.
Vehicles with a very low hip height require significant strength in the leg and hip extensor muscles in order to be able to stand up out of them. Getting into the vehicle is also difficult as it requires a controlled landing onto the low seat. It can be difficult for an assistant to help someone get out of a low vehicle, as they must be able to lift the individual upward against gravity while working in a confined space.
¶ Ingress and Egress
¶ Adaptive Equipment
A door catch handle is a small grab handle that fits into the door catch of a car, which is used to assist with getting in and out of the car. The position of the door catch varies from car model to car model, and may not always be in an ideal position for using this product. Adequate strength in the triceps muscles is required for this product to be useful.
A transfer board can be used when transferring from a wheelchair to a vehicle's seat. However, the base of most car seats are on a significant rearward angle, which can affect the positioning of a transfer board. Further, the transfer board may need to be very long in order to adequately reach all the way from the wheelchair to the seat.
A power wheelchair with a seat elevator feature may be adjusted to make the transfer into or out of the vehicle always be downhill; otherwise either ingress or egress will likely be an uphill trip instead, which may require assistance.
A vehicle transfer lift is a device that mounts to the vehicle itself and provides a way to lift the individual up and into the vehicle.
¶ Methods
Methods of getting into and out of a vehicle vary greatly depending on the vehicle, the person's height, and their level of strength.
Minor difficulties:
- having the patient grab the pillars of the vehicle, seatbacks, or other points of contact to maintain support
Moderate difficulties:
- as above, plus:
- use of a door catch handle
- use of a transfer board
Major difficulties:
An accessible vehicle or alternate form of transport, such as a taxi or patient transfer service should be used when getting in and out of a vehicle has become extremely difficult.
Some patients may benefit from using a vehicle transfer lift if available; however, many patients having this level of difficulty getting into and out of a car may not be able to sit properly in a standard car seat anyway.
¶ Vehicle Controls
¶ Steering
Steering an automobile requires adequate use of the upper limbs and hands. Driving with weakened pinch strength may be possible for a moderate amount of time, however, once weakness has progressed more substantially, it will no longer be possible to safely steer the vehicle.
A steering assistance device known as a brodie knob is used by some individuals with disabilities. An individual with ALS would see little benefit in their use if they have not retained their grip strength to hold the knob. Further, brodie knobs are illegal to use in most parts of the world unless prescribed by an occupational therapist or physician.
Other more sophisticated devices can be used to aid with steering. Such devices do not require significant pinch strength, unlike brodie knobs.
¶ Pedals
Depression of the pedals requires sufficient strength in the quadriceps and gastrocnemius muscles; alternating between the throttle and brake pedals require sufficient strength of the hip flexor muscles, as does moving the left foot from the footrest to the clutch pedal.
Difficulty with operating pedals can be mitigated by using adaptive equipment that allows operating pedals with the hands. Such devices would become inappropriate to use once the upper limbs weaken.
¶ Accessories
Automobiles often have controls and switchgear that are difficult to operate with insufficient pinch strength.
Temperature controls are important for safety. If they are too difficult to operate, they should be pre-set to a suitable range so that the vehicle does not get too cold.
¶ Driving Techniques
Whether the individual with ALS is the driver or a passenger, extra care should be taken to ensure safe and comfortable transport.
Bumps in the road, especially large bumps should be avoided whenever possible. Large bumps can place significant stress on the individual's neck. Scan the road surface ahead to look for a large bumps and avoid them. On freeways, there is often a large dark patch after dips and bumps where vehicles have dropped small dots of oil over time. These dark patches can be used to identify bumps in advance.
Bumps should be driven over as slowly as possible when they can't be avoided. It is a myth that there are higher speeds where the bump will be felt less. Slower is always better.
Swerving, including to avoid large bumps should be avoided. Many neck support devices do not provide adequate lateral support; swerving can cause excessive head movement.
¶ Roadside Assistance and Emergencies
For non-urgent situations, an accessible taxi or paratransit service may be contacted, though the wait time could be significant.
In the event of a vehicle breakdown where the individual with ALS must exit the vehicle, and the transfer lift or ramp system is not functioning, the use of emergency services such as 911 or 112 should be contacted for assistance.
Never attempt to extract an individual with advanced ALS from a vehicle without assistance from emergency services, unless the vehicle is on fire or at risk of a high-speed collision at a location such as along a freeway.
¶ Maintaining a License
Maintaining a driver's license while living with ALS requires consistent contact with a qualified occupational therapist that can assess the individual's ability to safely operate a vehicle. The use of adaptive equipment can prolong safe operation of a vehicle for an extended period; such equipment would be prescribed by the occupational therapist.
Physicians and occupational therapists who work with patients with disabilities are legally required to report to the government whether the patient is fit to continue driving.
In most regions, there is no concept of a "limited" or "partial" driver's license that would permit driving at limited speeds or short distances. Instead, individuals are typically classified as either capable of driving, or not. The only exception is the possible requirement to use certain adaptive equipment, as is the case with corrective lenses.
Most jurisdictions have a process to surrender a driver's license. An alternate photo ID card can be issued in its place.
¶ Alternatives to Driving
When driving is no longer safe or appropriate, other modes of transport can be used, such as:
- passengering in an automobile being driven by someone else, such as a wheelchair van
- hiring an accessible taxi or white-glove patient transport service
- using public transit
¶ Further Considerations
Disease progression in ALS necessitates continuous reevaluation of the ability to drive. Adaptive equipment may prolong independent driving for some time, however, eventually the equipment needed would increase in number, cost, and level of sophistication.
Driving with a disability while not appropriately equipped to do so may have serious implications in the event of a collision; the driver may face charges of dangerous driving or negligence in such a scenario. Insurance companies may refuse to pay for damages.
Accessible vehicles can often be found on the used market at reasonable prices if time is taken to shop carefully. Beginning the search early can lead to significant savings.