Home care for ALS patients

  In the early stages of the disease, patients may feel weakness and inability to lift their muscles, and gradually develop atrophy of the limbs, resulting in motor impairment, difficulty in walking and movement, and the tendency to fall.  ”Because of the disease, the patient will easily feel weak and fatigued, and will not be able to move their arms and legs, such as walking and stumbling, and not being able to hold chopsticks well, and some people will have a constant flow of water, slurred speech and swallowing problems. Some people may have difficulty in defecating, nasal congestion, etc. These symptoms are very uncomfortable, including changes in body image, and affect their daily life. It takes more patience for family members to take care of these patients, but there are ways to help solve these uncomfortable conditions, so please don’t be overly afraid or nervous.  Some patients may have calf cramps that prevent them from sleeping, so they can straighten their calf muscles to ease the symptoms.  Patients often feel fatigue due to the overload of other nerves that are not damaged, and the best solution is to get enough rest. Some people may feel pain, and if they feel tired and strained, they should be helped with gentle massage or proper postural positioning. These can relatively improve the pain situation, if the pain is really unbearable, then you need to ask the doctor to intervene with medication.  If the patient has occasional uncontrollable and inexplicable crying and laughing, the family must understand that this is not a mental disorder, and if the situation is serious, a doctor’s intervention is needed.  ALS causes poor tongue movement and difficulty in swallowing saliva, thus often producing drooling or choking on saliva. The problem can be solved by wiping frequently with a Kleenex or by holding a sponge or fine cotton cloth in the mouth. In severe cases, medication is an option.  When the patient has swollen hands and feet, it is recommended that the patient use a pillow to elevate the swollen limbs when sitting or lying down, massage the patient, let the patient take a hot bath to improve the swelling, and try to move when the patient can move, such as stretching, changing positions, in a word: do not sit for a long time if you can walk, and do not lie down for a long time if you can sit.  Muscle jumping pain is usually related to the person’s emotion and exertion. For the above conditions, local heat, local massage, psychological relaxation and sleep improvement can help to relieve muscle jumping.  Because muscle atrophy loses its protective effect, the skin and bones of the joints are compressed, and the opportunities for joint movement become less, resulting in stiff and painful joints and aggravating movement disorders. In this case, move to the joints 3-4 times a day as much as possible, starting with the larger joints and breathing deeply while doing so, but not doing big movements that make the patient feel pain. Be especially careful as the shoulder is easily dislocated.  After doing the exercise, proper positioning is very important as it can prevent the re-sclerosis of the joint. A total of the following points: 1. Shoulder joints can be slightly padded when lying down to prevent dislocation; 2. Elbow joints can be placed relatively alternately; 3. Fingers tend to be stiff, use a thin bandage to make the fingers slightly bent; 4. Hip joints tend to be turned out of the feet, you can add pads on both sides of the body to prevent turning out; 5. Padding under both knees to make the knee joints slightly bent can prevent knee stiffness; 6. Ankles tend to hang down the feet, you should use a pad to support them.  There are many reasons for not being able to sleep, such as nasal congestion, too loose jaw, phlegm, vocal cord spasm, etc., which block the upper airway leading to poor breathing or occlusive no breathing. Changing the patient’s sleeping position, doctor-prescribed medication, and using a bi-level non-invasive ventilator can make the above conditions improve. In addition, anxiety, fear, depression, etc. can cause insomnia. This requires the patience and comfort of the family or the guidance of a professional psychologist.  Burning in the chest is due to acid reflux. Be careful if the patient has foul-smelling breath, difficulty breathing, or the urge to vomit, even if there is no burning in the chest. Avoid irritating foods and eat small, frequent meals as a rule. And consult with your doctor.  Constipation can be caused when the intake of water, vegetables and fruits is reduced, when there is insufficient exercise, and when the lower abdomen cannot make any effort. The prevention methods are as follows: 1. Increase the intake of water and high fiber: e.g. apple puree, vegetable juice, etc.; 2. Increase active or passive exercise, gentle abdominal massage (clockwise direction), and if the patient can no longer walk or stand on his own, rely on the assistance of family members to stand A few minutes is also a good activity.