Hello World!

 I am sure that the number one problem that all families of ALS patients face is Communication. Not only because ALS affects speech but also because most people don't know what to say to a person who was "normal" until now but is sick and disabled suddenly. This leads to situations of awkwardness, stress, despair, weird silence, or simply confused looks or blank stares. So I decided to jot down some tips from my own experience. Some of these might seem like stating the obvious, but trust me they are not so obvious. But they are very much doable.

Be in a visible range while speaking 

The patient's range of neck movements maybe limited. Also the patient can gauge from the other person's expression whether the said thing is understood or not.

Be at patient's eye level 

When you are stuck to a chair or bed the whole time, your perspective of looking at the world literally changes. It would make things a lot easier if I didn't have to look up all the time while straining my neck. So maybe sit down near the patient.

Don't shout a question from the other room 

Not only does this flout the above tips, the patient's meek voice will rarely reach you when they answer.

Don't this or that 

Instead of asking do you want this or that? Ask do you want this? Pause. Let us answer. Then proceed with do you want that? This breaks down a multiple choice question into a yes or no question which can be answered with a nod.

Keep your volume down 

People with ALS get startled easily. It helps to be spoken to in a calm voice.

Don't auto complete our sentence 

This adds the unnecessary overhead of correcting what you thought I wanted to say 

One at a time 

If in a group, it would help if one person spoke to the patient at a time 

When chatting 

Even a pro tobii user can't match the typing speed of a normal person. So give enough time gap while chatting.

Topic of conversation 

We would appreciate if spoken to like a friend rather than like a patient. We would like to hear about your day  or chat about current affairs or even share memes.

The truth about ALS is we are all putting a lot of effort. By making small tweaks we can channel these efforts in the right direction to achieve better results.