Coming to terms with a diagnosis of ALS can be very difficult. ALS leads to progressive loss of muscle function, which can affect many aspects of life, including the ability to drive.
However, just because you’ve been diagnosed with ALS doesn’t mean an immediate loss of your independence, whether on the road or throughout your life.
In this article, we’ll explore exactly what ALS is, how it affects your body, and how with the help of adaptive driving devices and occupational therapy you can safely extend your time driving.
What is ALS?
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a rare but usually fatal neuromuscular disease that impacts between 1-2 of every 100,000 people (.02%) and causes the death of motor neurons in your body.
ALS has two forms: familial ALS, a hereditary form which occurs in about 5% of cases, and sporadic ALS, in which the condition appears randomly. Both forms are characterized by the same effects — rapidly progressing weakness, muscle atrophy, and eventually paralysis.
The exact reason that people develop ALS is unknown, but the result is that the motor neurons that help the brain communicate with the body’s muscles begin to deteriorate. As these nerve cells break down, muscles no longer receive impulses from the brain.
The affected body parts begin to lose function, and then muscles begin to atrophy from lack of use. This progression usually starts in the limbs or speech muscles, and eventually progresses to paralysis.
The end-stage complications for ALS result when involuntary muscles in the body become paralyzed, leaving it impossible to breathe or perform other key functions without a ventilator. In general, ALS is terminal within three to five years of diagnosis.
There is no treatment for ALS, but newer medications and therapies have been shown in clinical trials to help slow its progression, which can extend and improve the quality of life in victims of ALS.
How Can ALS Affect My Ability to Drive?
ALS is a disease that worsens with time, so the effects you feel, and the ways that they impact your driving, will change over time as well. We’ll touch on the three main areas — cognitive, physical, and visual — below.
How ALS Affects Your Cognitive Abilities
ALS affects cognition differently in different people. In nearly half (50%) of ALS cases, your neurodegeneration is limited to motor neurons, so your ability to think is unaffected.
In about 25% of ALS cases, you’ll notice mild changes in thought and behavior. These changes can include brief instances of childlike behavior, intense emotions, disregard for social norms, lack of good judgment, or forgetfulness, among others.
These changes in memory and judgment may be entirely manageable, or they may make it difficult to safely navigate or react to traffic while on the road.
Finally, in the remaining 25% of ALS cases, your neurodegeneration may be complete enough to be comparable with dementia, which can include significant memory loss, confusion, lack of focus, and difficulty communicating.
In these cases, it can be very difficult to follow the rules of the road, recall how to operate a vehicle, or respond effectively to stimuli while driving.
How ALS Affects Your Physical Abilities
ALS causes progressive loss of muscle function, which can affect your driving abilities with increasing severity.
In the early phases of ALS, you may not notice any serious changes. But over time, this gradual muscle weakness can make it harder to grip the steering wheel, open the door, or operate the pedals. These tasks, and many others, can in turn increase your risk on the road.
Reaction time and stamina can also be affected, making it difficult to react quickly on the road, or drive for long distances.
Within the first year, ALS usually progresses to the point where a lack of muscle strength means that normal driving is no longer possible without adaptive devices (like controls on your armrest).
Then, in later stages, loss of core muscle control and neck strength may make driving impossible.
How ALS Affects Your Visual Abilities
Eye function tends to be relatively unaffected in ALS patients, with serious changes to your vision, acuity, peripheral vision, and the distinction between objects happening far less often than muscle degeneration.
Even in cases where your vision is affected, this complication is usually the result of late progressions that have already affected your driving.
At-Home Therapies for Drivers with ALS
Because of ALS’s aggressive nature, you may require frequent physical therapy like strength training, stretching, and a carefully tailored diet to help keep your body functioning as well as possible. These strategies can all be planned with a doctor or physical therapist.
The goal here is to maximize your physical abilities, prolong survival, and maintain effective function as much as possible.
Who is Responsible for Determining if I Can Still Drive with ALS?
Because ALS progresses rapidly, it can be difficult to determine by yourself when the loss of muscle function (and possibly cognitive function) means that you should modify your driving or transition away from driving.
A loved one or healthcare provider can provide some insight, but there are no laws in Connecticut or the United States that mandate medical professionals to report patients who may be unable to drive due to medical conditions.
The state encourages physicians, law enforcement, or concerned family members to submit an anonymous, civilly protected form to the DMV if they’re concerned about a driver’s ability to safely drive.
This process can lead to a suspension of your driver’s license, but is voluntary and doesn’t provide much guidance.
Our recommendation, then, is to work with a Certified Driver Rehabilitation Specialist (CDRS) and receive a Comprehensive Clinical Assessment, and if possible, a subsequent Driving Assessment.
Under the guidance of these occupational therapists and driver rehab specialists, you can get a complete understanding of your situation, recommendations for how to move forward as a driver, and assistance on how to plan alternate transportation if needed.
What Does Next Street Look for When Assessing Patients with ALS for Driving?
Whenever possible, our CDRSs meet with you at home for an assessment of your abilities. This assessment only requires a good night’s sleep and normal meals so you can get through the potentially two-hour assessment.
No need to memorize anything, as this is a test of motor skills, not knowledge.
After getting to know your unique situation, our CDRSs will evaluate your visual, physical, and cognitive abilities in-depth, to determine any potential obstacles to your safety behind the wheel.
If all goes well in this initial assessment, these specialists can recommend you for a driving assessment at a later date.
Possible Driving Outcomes
Depending on the outcome of your initial assessment, there are several possibilities our CDRSs may recommend. However, with ALS it’s worth noting that progressive degeneration may require a periodic reassessment of your skills as you move through different outcomes.
In the event that ALS has not seriously affected your motor skills yet, it may be possible to drive as normal. Still, we recommend very closely monitoring your health to determine any potential restrictions.
Restricted Driving Privilege
In the early stages of ALS, it may become more difficult for you to react quickly or handle the physical stress of long drives. In this case, some restrictions like only driving during the day, in good weather, or around town may help you maintain mobility and safety.
Adaptive Driving Devices
ALS eventually progresses to the point where you’ll no longer be able to operate a vehicle as usual. However, it may still be possible for you to extend your safe time on the road by using hand controls, steering wheel knobs, and other adaptive equipment.
Retirement from Driving
Eventually, ALS and almost all motor neuron diseases reach a point where you won’t be able to physically operate a vehicle.
However, even in these cases, our CDRSs can work with you to develop a transportation plan involving loved ones or specialty transit services to maintain your mobility and independence.
Take the Next Step
At Next Street driving rehab, our goal is to help you maintain your mobility and independence for as long as possible while keeping you safe and comfortable on the road.
If you or a loved one has been diagnosed with ALS or any condition that may affect their driving, you can reach out to us for a free consultation.