Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.
Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.
Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.
Symptoms
What are you dealing with?
Start with the problem you are living with, and find what may help, what guidance says about it, and who to raise it with.
This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.
Movement and muscles
Cramps, stiffness, pain, and moving about safely.
Falls and unsteadiness
Trips, stumbles and falls, often because a weakening leg or foot no longer clears the ground reliably.
Muscle cramps
Sudden painful tightening of a muscle that holds for a while and then releases, often in the legs, feet or hands.
Pain
Pain is common in ALS/MND, often related to how the body is being held, moved or supported, and it is treatable rather than something to put up with.
Spasticity and stiffness
Muscles that are stiff and resist being moved, sometimes with sudden tightening, which can make movement harder and less comfortable.
Breathing and sleep
Breathing, coughing, clearing secretions, and how you sleep.
Breathlessness
Feeling short of breath, which in ALS/MND usually comes from the breathing muscles weakening rather than from the lungs themselves.
Disturbed sleep and morning headaches
Broken or unrefreshing sleep, sometimes with headaches on waking, which in ALS/MND can be a sign that breathing changes during sleep.
Weak cough and clearing secretions
A cough that no longer has enough force to clear the airway, so mucus and secretions are harder to shift.
Speech, saliva and swallowing
Being understood, managing saliva, and eating and drinking safely.
Pooling or drooling saliva
Saliva collecting in the mouth or escaping it, usually because swallowing has weakened rather than because more is being made.
Speech that is harder to understand
Speech becoming slower, quieter or less clear because the muscles used for speaking have weakened.
Swallowing difficulty
Food, drink or tablets becoming harder or slower to swallow, which can make eating tiring and sometimes less safe.
Thick or sticky secretions
Saliva or mucus that has become thick and hard to shift, which is a different problem from too much thin saliva and is managed differently.
Eating, weight and digestion
Getting enough in, keeping weight on, and digestion.
Losing weight without meaning to
Weight coming off without you trying, usually because eating has become harder or slower rather than because you want to eat less.
Energy, thinking and mood
Tiredness, emotions that do not match how you feel, and low mood.
Anxiety and low mood
Persistent worry, fear or low mood, which is common in ALS/MND and is treatable rather than something to be endured.
Fatigue
Tiredness that is out of proportion to what you have done, and that rest does not fully fix.
Laughing or crying that does not match how you feel
Sudden episodes of laughing or crying that come on without warning and do not match what you are actually feeling.