While travel can present unique challenges for people with ALS, a comfortable travel experience is possible with planning and patience. This fact sheet offers tips for planning a trip while living with ALS, whether it is a local day trip or a longer excursion including air travel. These tips may be helpful for things like running errands or visiting a specialist
in another city, too.
It is important for people with ALS to feel closeness and connection with their intimate partners, and to experience healthy sexuality, whether with a partner or solo. While ALS does not affect sexual functioning directly, the disease progression affects mobility, mood, strength, and breathing, so creativity and experimentation may be required to
achieve satisfying sexual intimacy.
Primary Lateral Sclerosis (PLS) is a rare progressive neurodegenerative disease which is similar to ALS. However, ALS and PLS are not the same thing. Unlike ALS, PLS only affects the upper motor neurons. ALS affects both the upper and lower motor neurons.
ALS is a progressive and fatal neurodegenerative disease that does not yet have a cure. When caring for you, your healthcare team will strive to maximize quality of life from the time you are diagnosed until end-of-life.
Kennedy’s Disease is a rare genetic disease with symptoms that are similar to ALS. It is also called spinal and bulbar muscular atrophy.
People living with ALS require increasing levels of care as their disease progresses. Most of the time, responsibility for personal care is taken on by caregivers such as family and friends.
Caring for a person with ALS is an important but demanding role. It can be stressful and emotionally exhausting. Caregivers may be at risk for stress-related health problems, burnout, and compassion fatigue, and can be at increased risk when they experience a lack of support, isolation, or financial difficulties. There are ways to help reduce these risks.
It is important for caregivers to feel well supported and when possible, take time for self-care.
Receiving an ALS diagnosis is devastating for all involved. It is normal to feel lost, frightened and unsure of what to do next or who to turn to.