How to communicate in patients with motor neuron disease with medulla oblongata involvement?

  A very big problem in patients with motor neuron disease with medullary involvement is the difficulty in speaking clearly. Although the patients are very clear and think very fast, the involvement of the muscles in the throat makes it very difficult for them to make themselves understood and gives the caregivers more challenges. It is frustrating to have difficulty understanding the patient and communicating effectively. Here are some tips for communication that patients themselves have summarized and can try: 1. For example, once, when the patient had just finished his lunch, he said, “Turn off the TV.” But the caregiver immediately said to the patient, “Can I help you get into bed?” Maybe the patient does need to get into bed after a while, but that has nothing to do with turning off the TV right now, and that’s not what the patient is trying to say.  If you didn’t hear everything the patient said, repeat only the parts you didn’t understand. For patients, it is more difficult to say a very complex and long sentence, you can just repeat the word that you did not hear clearly.  2. Do not ask “two-way” questions. For example, “Do you want to go to bed or stay here?” This means that the patient cannot express himself by simply answering “yes” or “no” and needs to answer more. So you can simply ask the patient, “Do you want to go to bed now? The patient can say “yes” or “no” by simply saying “no”.  It is easier for the patient to say “no” than “yes” and to “shake his head” rather than “nod “. So if you ask the patient a yes/no question and you don’t seem to get a response, then indicate that the answer is yes.  3. Don’t forget the coherence of the preceding and following words. For example, this is an actual conversation. p is for the patient and o is for the other person. p, move my right hand forward a little. O, move your right foot forward? P, my hand. O, your head? P, my hand. O, your hand? P, yes. O, then your hand? P ……! (At this point the caregiver should relate to the previous statement and move forward a bit.) 4. Do not touch the patient until you understand what the patient is asking for. For example, if the patient’s hair is blocking his or her eyes and the patient wants the caregiver to move the patient’s hair to stop blocking my eyes, do not move first when the caregiver does not know how to move. In this case, you may have kindly turned the patient over, moved the arms and legs, and even massaged the whole body, but the patient may still be dissatisfied because the hair blocking the eyes was not plucked away.  5. If all else fails, you can go through phonics, or a note board, or an eye control device. Communication is necessary, and having good communication is a completely different state for the patient. It is important to pay attention to effective communication with the patient.