Coming to terms with being diagnosed with ALS can be very difficult. Its progressive loss of muscle function means slowly losing many abilities, including the ability to drive. With this comes a loss of independence, which can impact one’s job, family, and social life. Just because you have been diagnosed with ALS doesn’t mean you need to give up the keys just yet. It may still be possible with adaptive driving devices to extend your time on the road.
What is ALS?
Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s Disease, is a rare but often fatal disorder that impacts around one to two out of every 100 thousand people. It has two forms. Familial ALS, which only occurs in about 5% of cases, is one that seems to be hereditary. The remaining 95% of cases appear randomly throughout the population and are known as sporadic ALS. Both forms are characterized by rapidly progressing weakness, muscle atrophy, and paralysis.
The exact cause of the disease is unknown, but for some reason, the motor neurons that help the brain communicate with the body’s muscles begin to deteriorate. As they break down, the muscles no longer receive impulses from the brain. The affected body parts being to lose function, and the muscles begin to atrophy from lack of use. Usually, symptoms first appear in the limbs, but speech muscles may also become weakened early on. Eventually, weakness progresses to paralysis. Not only do victims lose the function of their voluntary muscles, but eventually the muscles used for breathing also become paralyzed, leaving them dependent on a mechanical ventilator. In many cases, people die within three to five years of being diagnosed.
There is no treatment for the disease, but newer medications and therapies may help to slow its progression and extend both the quantity and quality of ASL victim’s lives.
How can ALS affect my ability to drive?
Since ALS is a disease that worsens with time, the effects you feel, and the ways that they impact your driving, will continuously increase.
How ALS affects your cognitive abilities
In nearly half of ALS cases, the neurodegeneration is limited to motor neurons, so thinking is unaffected. Of the remaining 50%, half of them will only experience mild changes in thinking and behavior. They will still be able to function normally but will have some noticeable changes. This may include childlike behavior, difficulty controlling intense emotions, disregard for social norms, lack of good judgment, or forgetfulness, among others. For some, these changes in memory and judgment may mean that they have difficulty safely navigating or reacting to traffic while on the road.
The remaining 25% of ALS patients may have such severe changes that they are also diagnosed with dementia (HYPERLINK TO DEMENTIA ARTICLE). They may have profound issues with memory loss, confusion, lack of focus, difficulty communicating, and other dementia symptoms. They may no longer be able to remember or follow the rules of the road, recall how to operate a vehicle, or know how to respond to stimuli while driving.
How ALS affects your physical abilities
ALS causes progressive loss of muscle function. In its earlier phases, a driver may not even notice any serious changes, but over time, they may notice that it is harder to grip the steering wheel, open the door, operate the pedals, or do any of the other tasks involved with driving. Not only will strength decrease, but also reaction time, making it difficult to make quick movements, such as swerving to avoid obstacles in the road. They may also see a loss in overall stamina, and long-distance driving may become challenging. Usually, within the first year or so after diagnosis, ALS can progress to the point where operating standard vehicle controls is no longer possible as patients no longer have the strength to lift their hands up to the controls. They may be able to use hand controls placed where their arms can rest, but over the course of the next few years, they will likely no longer even be able to operate these. As core muscles deteriorate, drivers may find that they lose their balance easier during turns. Eventually, the patient will no longer be able to control their head to watch the road.
How ALS affects your visual abilities
For some reason, the muscles of the eyes tend to be more resilient in ALS patients, and serious changes in vision are far less common than loss of limb function. When it does occur, it is often late in the progression of ALS. This is good news, in that most people with ALS will retain their ability to see. They may still lose function in their neck muscles, making turning their head to see traffic impossible, though they are unlikely to suffer changes in their acuity, peripheral vision, and ability to differentiate between objects they are seeing.
At-home therapies for drivers with ALS
Because of ALS’s aggressive nature, more serious physical therapy may be needed to minimize weakness. Both strength training and stretching can help minimize muscle cramps and stiffness. As with any health problem, proper diet and adequate sleep can help lessen symptoms. There is some debate on what sort of diet is best, so consult your physician for their recommendations. Some research also recommends massage and swimming as ways to minimize symptoms. This translates into maximizing your physical abilities to help you drive to the best of your potential.
Who is responsible for determining if I can still drive with ALS?
Because ALS progresses rapidly, you may feel fine to drive early on, but within the coming months to years, you will slowly lose function and need to first modify your driving before eventually giving it up altogether. In some cases, a person with ALS may feel so uncomfortable with their ability to drive that they choose on their own to give it up. Other times, their loved ones or healthcare provider may be concerned that the disease has progressed to the point that it is no longer safe for them to be behind the wheel.
In Connecticut, there are no laws that mandate medical professionals report patients who may be unable to drive due to medical conditions. The state does, however, encourage physicians, law enforcement, or concerned family members to submit documents to the Department of Motor Vehicles identifying such individuals and triggering a process that would suspend their driver’s license until such a time as they could be tested and found safe to drive. If you are concerned about the driving of someone you know with ALS, these forms can be found on the State of Connecticut DMV website at https://www.ct.gov/dmv/cwp/view.asp?a=818&q=245036. Forms can be submitted anonymously or with the submitter identified, and documents state that “No civil action may be brought against someone who provides such a report in good faith.”
If you are a healthcare provider and are concerned that a patient’s driver’s license should be suspended until further evaluation, you should refer them to a Certified Driver Rehabilitation Specialist (CDRS) for a Comprehensive Clinical Assessment, and if possible, an actual Driving Assessment. You can find a CDRS in your area by searching the directory on the Association for Driver Rehabilitation Specialists website, www.aded.net. You should also help the patient create some sort of transportation plan for the time until they have completed their evaluation. This might mean helping them make arrangements with friends or family or looking into ride services like Uber and Lyft or other forms of public and specialty transit.
What does Next Street look for when assessing patients with ALS for driving?
Whenever possible, we try to meet with you in the comfort of your own home to carry out an assessment of your abilities. All you need to do to prepare is to get a good night’s sleep and eat normal meals so you have the strength and energy to get through the visit, which can take up to two hours. Don’t worry about needing to memorize anything, this isn’t a test of your knowledge, it is an assessment of your motor skills and your cognitive and visual abilities.
We start out by taking the time to get to know you and your unique situation. Then we evaluate your visual, physical, and cognitive abilities. We check your visual acuity, peripheral vision, and your ability to move your eyes about and scan your environment. We check your physical flexibility, strength, and coordination. This includes both muscle coordination and hand-eye coordination. There will also be several exercises we do to evaluate your memory, awareness, judgment, and ability to follow directions. If this all goes well, we will recommend you for a behind-the-wheel evaluation at a later date.
Possible driving outcomes
Depending on the outcome of our assessment, there are several possibilities for what we will recommend. Keep in mind, however, that because ALS causes progressive degeneration, you will also progress through these categories until it is no longer safe to drive. This may mean periodic reassessment.
In the event that ALS has not taken a serious toll on your health yet, it may still be possible to drive as normal, though you will need to closely monitor your condition to know when you need to be reevaluated.
Restricted driving privilege
As you slowly lose function, it may become more difficult for you to react quickly or handle the physical stress of long drives. You may need to be placed under restrictions that prohibit you from driving at night, in poor weather, or in busy locations such as freeways.
Adaptive driving devices
Your ALS will eventually progress to the point where you can no longer operate a vehicle as usual. It may still be possible for you to use hand controls, steering wheel knobs, and other adaptive devices to maintain a safe level of control over the vehicle.
Retirement from driving
Eventually, your ALS will have reached the point where you can no longer physically operate a vehicle. While this means you will have to give up the keys, it does not mean an end to your independence yet. We will work with you to develop a transportation plan involving loved ones or specialty transit services to help you maintain your mobility for as long as possible.