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Speaking and Swallowing
As mentioned before, when the onset symptoms of ALS are speaking or swallowing problems, it is known as Bulbar ALS. For other people with ALS, these problems don't generally occur until the later phases of the disease.

(See Section 7 and Section 9 of this manual for detailed comments and suggestions regarding swallowing and speaking problems.)

People with Bulbar ALS are vulnerable to significant weight loss, and should consider a feeding tube in the earlier phases of the disease. For those who lose their ability to speak, there is now a range of communication aids on the market.

Choking
Those with swallowing problems are vulnerable to choking. Because this can be very dangerous, get advice from your doctor and other healthcare professionals about how to deal with this problem.

Drooling
People with Bulbar ALS often develop an excessive drooling problem. Your doctor can offer various medications to reduce drooling.

Build-up of Saliva
People with Bulbar ALS commonly see a reduced ability to manage saliva. This problem is even greater for those using tube feeding.

Saliva and Mucus in the Lungs
If you are immobile, a problem can develop coughing up saliva and mucus. You should see a doctor as soon as possible. There is a technique for freeing saliva and mucus from the throat and lungs, which involves lying on a slope with your head on the down side so that the saliva flows down when the technique is applied. This technique should be taught by a trained professional who is familiar with and can demonstrate the correct position and procedures. This is especially the case if you are experiencing shortness of breath. Also, a suction unit can help by removing saliva from the mouth, and preventing it from flowing back into the lungs.

Coughing
Coughing can occur for more than one reason. For example the lungs can clear a passage by automatically and unexpectedly expelling air, while at the same time irritations in the throat can also cause unexpected coughing.

(See Section 6 regarding coughing caused by tube feeding, and Section 10.)

Eating
Continue to feed yourself as long as possible. However, if you feel too weak to manage a whole meal by yourself, then compromise, and seek help for half of it. Get input from a dietitian regarding modifying the texture of the food you eat.

(See Section 7 for more information.)
(See Bulbar ALS Questions for more information.)

Excess Emotions
An unusual and often misunderstood symptom of ALS is experiencing uncontrollable emotions such as excessive laughing or crying. This is called emotional lability, and can be particularly frustrating for the person with ALS, because the outburst is often caused by something very trivial and may be misunderstood by other people. This symptom usually catches people by surprise when it first happens; however, over time, many learn how to modify these emotional outbreaks and how to avoid some of the situations in which they occur.

Constipation
This can be caused by a lack of adequate fibre and/or water through tube feeding. Ask a dietitian about ways to add more fibre to your diet. If adding fibre to your diet doesn't solve the problem, see a doctor about an appropriate medication.

Fatigue
One of the best ways to combat fatigue is to conserve your energy for really important tasks or activities that you really enjoy. An occupational therapist can plan a daily routine with you that will help you to adapt to life with ALS. Some tasks can be done in different ways that will save some of your energy.

There are a large number of aids that can help you to do the things you now find difficult. It is essential that you consult your therapist before buying an aid in order to avoid expensive mistakes.

(See Section 10 for further information.)

Sleeping
People who are unable to move get very uncomfortable lying in the same position while sleeping for several hours. There are special beds, which help an immobile person sleep without being manually turned during the night. A satin bottom sheet and nightwear also facilitates turning.

Use of Alcohol and Medication
Many people try a little wine or spirits. Be very careful. The combination of alcohol and many medications can cause serious problems. This is not always predictable. For example, alcohol with some medications, such as a simple cough remedy, even taken several hours apart, can restrict a patient's ability to breathe, and at the same time cause a coughing spell, both lasting for hours. Also, reduced motor control can be accentuated by alcohol.

Other ALS Symptoms
You should consult your doctor for drugs that are available to treat other common ALS symptoms, such as muscle spasms, cramps, pains and sleeping problems.

The use of sedatives and tranquillizing medication depresses respiration and should be used cautiously by those with impaired pulmonary function. People with pseudobulbar affect may be helped by antidepressant drugs, such as amitriptyline hydrochloride.

Download English Manual (PDF Format)


  • Download English Manual (PDF Format)



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