Driving and Huntington’s Disease
Once a person is diagnosed with HD or tests positive for the HD allele, many adjustments will have to be made in due course in his or her life. For example, some people will change their diet, others will increase their amount of daily exercise, and some will do both. In addition to such lifestyle changes, some who are symptomatic may choose to limit or even stop former daily activities, such as driving automobiles. Whether it is always necessary to cease driving still remains to be seen, yet studies show that the vast majority of HD patients end up turning in their keys.
The liberty to drive is often taken for granted by the population at large. However, for people suffering from neurodegenerative diseases like HD, a loss in the ability to drive may stimulate feelings of helplessness and depression due to a loss of independence. HD patients often become dependent on family members and friends to take them out and drive them from place to place, especially in areas where public transportation is inadequate. This dependence can be taxing for both parties involved, and it is sometimes viewed as an added burden.
The ability to drive can be significantly impaired by HD, and this is an issue which should not be ignored when making lifestyle adjustments. However, an HD diagnosis does not automatically mean that a person should cease driving. Since different people are in different stages of the disease, to continue or stop driving altogether is a personal decision that should be made with input from family, friends and physicians.
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Why do people with HD give up driving?^
In many cases, people with the symptoms of HD will give up driving because they think the disease has compromised their ability to be a safe driver. If in doubt, an independent evaluation of driving safety can be obtained from a local driving school or “driver’s ed” instructor. In these instances, people will stop driving in order to prevent accidents, bodily harm and even death. Automobile collisions and mishaps can also lead to increased financial burdens on the family, such as property loss, medical bills and insurance claims.
Specifically, a main reason why many HD patients give up driving is the way the disease affects their mental capacity. Many individuals with HD have problems with divided attention, that is, the ability to split one’s attention between two or more tasks simultaneously. Often, people with HD will not be able to concentrate on two activities at the same time when driving, resulting in a failure to stop appropriately at red lights and stop signs, in a failure to stay in one driving lane at a time, or in other accident-causing actions. These actions can result from being distracted in the car by having conversations with passengers, listening to the radio or CD player, or concentrating on matters other than driving.
Another issue that impairs one’s ability to drive is implicit memory. Those with HD usually have problems with this type of procedural, “unconscious” memory. Since driving involves motor function, it falls under the category of implicit memory, and drivers might find themselves getting lost easily and unable to follow directions. Thus, a greater amount of “conscious” memory and concentration is needed by individuals with HD in order to drive a car without any problems. (For more information on the cognitive symptoms of HD, click here).
Finally, physical impairments, such as involuntary movements of the body, hands and feet – all signs of chorea, also undermine driving ability. Any uncoordinated movements of the driver in the car can lead to problems with speeding, stopping, turning or simply driving in a straight line, to name a few.
Currently, there is very little research conducted on driving and HD patients, although several research centers are looking to explore the topic in more in-depth ways. In one previous study, a group of 73 HD patients were given clinical and cognitive examinations as well as a questionnaire in order to determine their driving history and competency. The study found that people with HD are at a greater risk for having automobile accidents. They also performed worse on driving-related tasks and were more likely to have been in an auto collision in the past two years than the control population.
These findings do not mean, however, that everyone diagnosed with HD should immediately stop driving. Rather, these findings reveal that a car can be a very distracting place regardless of one’s condition, and that people with HD must be extra careful if they choose to drive.
What does the law have to say about HD and driving?^
To date, there is no uniform, national law concerning driving with HD or other neurodegenerative disease. Various states have different laws and practices addressing the issue. Across the nation though, studies have shown that the majority of patients stop driving voluntarily, rather than because of observance with the law.
Currently, nine states (California, Delaware, Georgia, Nevada, New Jersey, Oregon, Pennsylvania, Utah, and West Virginia) have laws requiring that doctors identify to a local health office their patients at least 14 years of age or older with “high risk” diseases that could compromise their driving ability. HD, Alzheimer’s disease, Parkinson’s disease, epilepsy, dementia, seizure disorders, narcolepsy and other similar conditions are all candidates for reporting. Since they are required by law, physicians are exempt from criminal and civil liability for reporting on patients but in fact, actual reports are rare.
If a patient is reported as having a compromising condition, then he or she must fill out a medical evaluation form in addition to being tested by the DMV. Based on the results, the DMV will then take no action if no problem has been found, or they may decide to issue a restricted/limited license or suspend/revoke the license if the driver is found to be unsafe. If a license is revoked, then only after a set period of time could a person come back, re-test and re-apply for a new driver’s license. If action is taken against a patient’s driver’s license, then he or she has 10 days in which to request a hearing after being contacted by the DMV in order to appeal the decision. Otherwise, the right to a hearing is forfeited.
To find out information for your particular state and its policy on driving with a medical condition, call or visit the web site of your local Department of Motor Vehicles.
How can individuals with HD drive safely?^
Driving is not an impossible task for those with HD. It takes an extra amount of effort and may be exhausting, since increased concentration is required by individuals in order to drive safely. A person with HD should be monitored for a period of time before any decisions are made to continue or discontinue driving. Independent testing and/or driver’s training should be considered as can be arranged with a local driving school.
Certain steps can be taken by those with HD and their friends and family to ensure that the driver remains safe. Limiting passenger conversations, avoiding cell phone calls, turning off the radio/stereo when traveling, and trying to maintain full concentration on the road are all good ideas when it comes to driving.
Individuals with HD should also try to avoid driving at high speeds and traveling in areas where there is a lot of traffic. Drivers should also be mindful of certain times of the day such as rush hour and when there is bad weather. If a person with HD needs to travel at these times, then it would probably be best either to use public transportation or to find a ride from a friend or family member.
Additionally, planning plays an important role when it comes to driving. Individuals with HD should consider combining multiple driving trips into one, finding and then sticking to low-traffic and low-speed routes, and always informing friends and family about where, when and how long he or she intends to travel. It is always advisable for persons with HD to plan a trip and think over options before hitting the road.
For further reading^
- Rebok GW, Bylsma FW, Keyl PM, Brandt J, Folstein SE. 1995. Automobile driving in Huntington’s disease. Movement Disorders. Nov;10(6):778-87.
- Hawley, CA. 2001. Return to driving after head injury. Journal of Neurology, Neurosurgery and Psychiatry with Practical Neurology. 70:761-766
- Lowit A, van Teijlingen ER. 2005. Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington’s disease patients. BMC Family Practice. Sep 14;6:38.