Can I travel even though I have ALS?
A person’s ability to travel depends primarily on their motor impairments, the mobility aids available to them, and the social support they receive.
A warm climate with high temperatures is generally well tolerated (in terms of muscle function). Experience shows that the effects of cold are perceived more negatively, as lower temperatures can lead to increased spasticity and a higher frequency of muscle cramps. Therefore, when planning a trip, the expected outdoor temperature should be taken into account, and appropriate clothing should be packed.
One’s own mobility, as well as the need for mobility and transfer aids and communication systems, must also be taken into account when selecting travel destinations and planning travel activities. The accessibility of transportation, hotels, and other accommodations varies greatly from region to region. Relevant online resources are a valuable aid when researching accessibility options. Various self-help organizations can also provide valuable assistance in decision-making and travel planning through their own experiences and travel reports.
With proper preparation, long-distance travel is generally possible. Critical issues that require special preparation and assessment include bringing or using ventilators on board airplanes and ships.
When preparing for air travel, you should contact the airline’s aviation medical service several months in advance. Please note that issuing statements and medical opinions regarding fitness to travel is not part of the regular scope of services provided by an ALS outpatient clinic. Due to the heavy workload of physicians at ALS centers, it cannot be assumed that they will be able to handle these documents, which are time-consuming to prepare. Therefore, support from relevant self-help organizations is of particular practical benefit.
A general assessment of fitness to travel based on respiratory function can be important for air and sea travel. Various medical facilities, such as the Charité, have established aviation medicine clinics that assess fitness to fly from an internal medicine perspective (independently of the ALS clinic). In this process, the air composition in an aircraft cabin can be “simulated” using a stress test.
In fact, the oxygen content in the aircraft cabin (especially during long-haul flights at high altitudes) can decrease by a few percentage points, thereby lowering blood oxygen saturation. In cases of respiratory insufficiency (hypoventilation), this change in air composition can have a critical impact on respiratory function. If you have such respiratory insufficiency, you should avoid air travel or coordinate the use of mask ventilation on board with the airline.
Bringing ventilators into the aircraft cabin requires a more extensive inspection process for the specific device, as there are strict safety requirements for bringing electrical devices and compressors on board (a ventilator is an electrically powered compressor).
Overall, traveling with ALS is possible, but it requires significant preparation (depending on the severity of mobility impairments and the assistive devices needed). From the perspective of social participation and quality of life, traveling with ALS is also recommended from a neurological standpoint.