Communication, difficulty swallowing and controlling secretions are the three main problems which you as ALS patient will have to face. We will inform you on each one of these issues.
One can communicate on different levels. Speech is just one of them. We also use our facial expressions, point at things and make gestures. We write things, and use a lot of other communication resources - resources extending each day thanks to the improvement of technology.
The speech therapist is there to optimize the possibilities regarding to your specific speech problems, to find ways to express what you want, what you need or desire and to express your emotions during the disease process. When there is deterioration of your speech, it’s because of the change in the muscle functions, which prevents you of producing the correct sounds. One of the first signs with ALS is that you will start mumbling and encounter difficulties pronouncing specific sounds or words. In other cases, you may notice a change in your voice, because deficiencies in your respiratory system make that you cannot produce the required volume. Or you experience that it takes much more effort to speak and that it really tires you out.
When meeting a speech therapist, is it his first objective to get the best out of your verbal communication possibilities. Subsequently other methods, to maintain communication, have to be explored.
Many care providers and others as well often think that some tool or another can fully replace the deteriorated speech. But the verbal communication is still the most efficient way of communication. You'll never find a device that can replace speaking properly. Therefore sometimes the speech therapist start an awareness program to find if any muscles are not affected and whether those can take over the work of the affected muscles. It is important hereby that you will minimize exposure to dust and cigarette smoke. If someone in your home is to vacuuming, it can irritate the vocal cords or larynx and that way affect the voice quality.
Strategies in order to adapt the environment are recommended because that way it’s not necessary to produce a loud or large voice volume. A good posture is also something you need to pay attention to. First and foremost to make the breathing, that supports speaking, as easy as possible. And furthermore, if the person you are talking to faces you, he can see your facial expression and can make something out of the position of your lips.
The care provider must also ensure that certain 'comfort issues' do not worsen the speech problems even further. These issues need to be dealt with first. Sometimes that requires adapting the surroundings. This can often be achieved by minor adjustments such as reducing background noises like television or radio volumes. This though is very important when you mumble rather than speak.
The speech therapist will train care providers to meet your speech difficulties. He also tries to teach you to express yourself differently or by means of descriptions instead of trying to repeat words that cause you difficulties. What matters is that the message gets across.
Mastering the secretions is something that you can be helped with. Some simple habits, such as swallowing before you start talking or drinking a sip can also help well.
Fatigue is a major problem. When you've talked for a long time, your speak muscles get tired or you yourself can get completely exhausted because of the posture you take. It is therefore important to ensure that the talks do not take too long or that you have longer conversations when you're in good shape.
If you start to laugh or to cry uncontrollably, and have it difficult to stop, we recommend that you discuss it with your physician. This can make the communication more difficult.
You can enable communication aids when you feel like your speaking no longer meets the requirements of good communication. It may start with problems when talking over the phone, problems when talking at the end of day trouble speaking at the end of the day, or you just can’t bring the message because you are too exhausted ... Still there is always a custom-made solution whereby you feel good and which is in line with your capabilities. Sometimes pencil and paper is already sufficient. It can also be a writing board you can wipe, then as pen and paper provide a permanent record of what was discussed. Sometimes communication boards are recommended, or boards with permanent messages, prerecorded messages, electronic devices (like Light Writer) are also included here, or signs that can be controlled with eyes.
The type of device that the speech therapist recommends depends on a lot of factors that you and your family have to consider. It can start with something simple and then gradually move on to other things if you feel more comfortable. When the devices become more technically you should get enough support for it here at home.
If a problem occurs the ALS Liga will always try to provide a substitute till the problem is resolved. The repair of some devices requires a certain time. An ordinary alphabet board can sometimes be very helpful.
Swallowing problems are caused by muscle changes that make it difficult for you to get your tongue or your lips move. You get a reduced muscle tone in cheeks, your jaws are stiffening, and your soft palate cannot move in the right way anymore. That makes eating and drinking difficult. You experience difficulties chewing or moving food in the mouth or to slide it back over the tongue, to then push it into the throat. It may also be that you have trouble putting food back in the throat or with getting the food in the esophagus the moment you swallow.
If swallowing is difficult, it can take lot of time and effort and you can get tired. If so, it can require a lot of time to take up the necessary food to comply to your daily energy needs. There is the risk of malnutrition and dehydration. At this point, it may be necessary to consider having a feeding tube placed, which of course is a very individual decision. It is the task of the speech therapist to inform you and your family so you can make a well-considered choice, which he / she can support you in.
There are other methods to help you with your swallowing problems. One of the research points which get started is to look at your posture while you eat. How do you keep your head, your back, your shoulders? The therapist should ensure a safe posture. Which is sitting up whiles drinking or eating with your head in a stretched position while your mouth stays in the same position. Even the cups can be customized. If you still can suck, straws can be used. When it’s no longer possible to suck, one can use a compressible bottle so that the food or drink can get passed the back of the tongue when you no longer can make that movement. Also, a teaspoon can be used, so that the amount of food to be swallowed is small, or one can adjust the thickness of the food and the beverage. Simple things can sometimes make a big difference.
Another simple thing is to focus on swallowing a second time with each bite. If you can still close your lips enough, it can help to pull back your chin a little. While doing so, you create a smaller pass through, which gives you a little more muscle tension to swallow the food or drink as well as to clear your throat again. It is also advisable to try to master your urge to drink, by taking small sips rather than continuously drinking.
It is a matter of finding the method that works for you. Maybe that means that the food needs to be chopped and /or just moisturized with some water. Or one has to consider beverages such as juices that are already a bit thicker in consistency, like apricot nectar, so that the muscles have more time to build a good swallowing reflex and to let the drink pass so that the risk of choking is reduced.
To determine the nature of the swallowing problem of a particular person, x-rays can be taken while the patient receives food and drink mixed with barium, clearly visible on the x-rays. In this way, speech-language therapists can determine how the patient is swallowing, which muscles do not function properly and which exercises can improve the actual condition. If swallowing becomes impossible, they can help the patients and caregivers to process food via a feeding tube.
The care givers and your family members are also provided with much information about changing the food and thickening the drink. The speech therapy may also work on controlling the salivation so no thick, slimy substance will be staggered that may inherit the food intake, or just to make sure that your mouth does not get too dry which makes it difficult for food to move around in the mouth. It is also required that the speech therapist has sufficient knowledge to help you clear your throat if you get entangled in to coughing up stuck food or drink.
The speech therapist always works with the medical staff. Everyone gets involved when your oral food intake is changed by placing a food intake tube.
Often help is wanted for controlling the various secretions.
Saliva in the mouth and mucus or phlegm in the throat are very stressful symptoms. It is very difficult because it feels like you are caught in a constant cycle of coughing. Many ALS patients produce too much saliva so their mouth gets really full of it. The problems have to do with the spit when speaking or drooling, or with the feel that the saliva goes over the back of the tongue and get collected by the pharynx.
The opposite also occurs, a too dry mouth, secretions that you can’t get down and problems during the night that wake you up.
But there are solutions to make these symptoms bearable. It comes down to learn how to cope with them. Some patients also have problems with the friction of the tongue due to their jaw joints being too week because they breathe through their mouth and then have a constant flow of air over their tongue. The tongue starts rubbing on the other parts of the mouth that have function in food and drink intake, which therefore gets more and more difficult. It’s possible to have an accumulation of dry secretions. This can be very uncomfortable and annoying too to wake up at night, to have food and drink difficulties, or to suffer from dry mouth or spit.
There must be a search for strategies that control these symptoms.
Speech therapists recommend breathing and relaxation exercises. You can practice it to swallow before you begin to speak, or to place a drink on the table next to the phone when in case of excessive salivation. It is important that you do not lean forward and sit up properly so that the abundance of saliva can roll back in the mouth naturally and herewith making swallowing easier.
The assisted cough is an important aid to keep the throat clean. Other natural remedies are the juice of dark grapes, paw-paw extracts, crushed ice or steam inhalation. All these things help to get more lubrication and to break down the thicker secretions, so the pushing back into the throat gets easier and then gets either swallowed or spewed.
Steam inhalation via a shower, an inhaler or a nebulizer can also help to break down the secretions.
Finally, there are the strictly medical devices that can help in controlling secretions. If above remedies do not help, we recommend that you discuss it with your physician because there are still several options possible.
ALS patients with swallowing problems often suffer from dry mouth or secretions harder because it is hard work having to swallow all the time. Because of the risk of dehydration solutions have to be found to ensure a sufficient intake of liquid. This should not necessary means by drinking. It can also involve eating pudding, or adding moisture to the meals or eating thick soup and other things that ensure that sufficient liquid enters and combats the dehydration.
When in a rather dry climate, it is certainly good to place little cups with water, to ensure enough moisture in the air.
What helps very well at night, is to smear a bit of grape seed oil around the mouth to take away the parched feeling. Wetting gels and saliva substitutes are available as well. If you normally wake up five to six times a night cause of dry mouth, and now that you can take in a few drops so you just wake up only a few times, then that's already a big improvement.
Finally, we emphasize that everything should be done in consultation and with respect to your personal needs and those of your family. The purpose of the ALS Liga is to provide the appropriate information. The speech therapy is there to help you in making your own well-considered choice between the various options to enhance your situation.
These services will keep monitoring you on a regular base, so that the detailed solutions are subject to your changing needs, and will be there to provide you, your family and the care providers with the necessary emotional support.