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Exercises to use full lung capacity can compensate for weakened muscles. This can be achieved with the following deep breathing exercise:

Sit at a table, hunched over slightly with your weight supported on your hands or elbows. This position expands the rib cage for larger breaths. Also, supporting the shoulders helps the neck muscles assist breathing. Breathe in as much as possible, hold the breath for a few seconds, and then exhale. Repeat several times.

Stop smoking. In addition to all of the other problems smoking causes, it reduces lung capacity. It can also cause increased phlegm that some patients will have difficulty clearing from their airways.

Some doctors believe that patients who do deep-breathing exercises are less prone to lung infections and partial lung collapse. Ask your physiotherapist to demonstrate an exercise routine and advise you about the use of exercise devices.

It is a good idea to avoid people who have colds or flu if you can. People with ALS are no more likely to catch these infections than other people, but they are at more risk of having simple respiratory infections develop into pneumonia.

If you do get a fever with bloody mucus coughed from the chest or if you notice that the mucus has changed from clear white to yellowish, tell your doctor immediately. These could be symptoms of a respiratory infection that could lead to pneumonia.

Failure of the respiratory muscles is an eventual result of ALS. Modern medical technology can offer portable life-support equipment, but the choice to use such equipment will have important consequences for your way of life and that of your family and caregivers.

Ventilators are “controlling” devices that take over your breathing. The decision of whether or not to use a ventilator is yours, but it is a decision that you should make only after consulting with your family, your doctor, and other healthcare workers.

Your doctor can tell you that you need a respirator. Only you can decide if you want one. You will have to decide whether you are willing to accommodate your life and that of your family to dependence on a respirator. Can you count upon the assistance of family members, including a primary caregiver? It is important to realize that technology has produced portable, lightweight ventilators that allow considerable mobility including travel. You should discuss the available options with both your medical practitioners and your family. If at all possible, the decision about a respirator should be made before a respiratory emergency develops, and you should ensure that your family is aware of your decision in case an emergency does occur. If you do decide that you are interested in ventilation, you will need to be referred to a respirologist.

There are various devices that can assist breathing. It is best to ask a doctor about each of the alternatives available in your area, and the long-term implications of each. Two common alternatives are non-invasive ventilation and tracheostomy.

Non-Invasive Ventilation
This system does not require an operation. It uses a pump called a BI Pap which produces two levels of pressure, and is attached to a small mask which fits over the mouth and nose. The two-level pressure system keeps the airways open, and air going to the lungs.

Tracheostomy
A tracheostomy is a surgical procedure that makes an opening in the neck which connects the throat's passageway to the lungs, known as the trachea. In the surgical opening a medical or plastic tube is put in place. This tube is connected via a hose to a volume ventilator, which assists with breathing. When necessary a suctioning device can be inserted into the tube in the trachea to remove secretions.

Before making a decision about having a tracheostomy or similar operation, both you and your family should learn from a doctor about the full implications of having this type of an artificial breathing device. For example, this will require full-time, 24-hour support from trained caregivers. To ensure that the equipment is always running properly, dressings are changed as required, feedings are attended to, etc. It is a full-time job for 3 people, assuming 8-hour shifts.

Tracheostomy - The Decision-Making Process
ALS is a disease that will ultimately disable all body movement, and yet a person with ALS can continue to be kept alive artificially. It is best to make a decision about the use of ventilation before a medical crisis. You should decide what level of inactivity you wish to endure, and give guidance to others about implementing artificial life support systems. Will your quality of life make it worthwhile? This should be thought through and discussed with family members, long before a decision is required. Factors in this decision should include family and financial concerns, as well as your wishes. If you are considering a tracheostomy, try to arrange a discussion with family members of a person who is living on a ventilator. Learn what they are going through so that your family will be prepared. An extremely helpful review of these factors is covered in the videotape Ventilation - The Decision Making Process produced by the Les Turner Foundation, a leading ALS centre in Skokie, Illinois, USA. Also, the GF Strong Rehabilitation Centre in Vancouver has a brochure called, Making a Decision on Ventilators.

Download English Manual (PDF Format)


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