This is a very common question. Lets say you are an old friend that just found out
someone you knew long ago has ALS. You want to go and see them and you don’t know
what to expect. What do you say? How do you greet them?
This does not only apply to old friends, it is a question I get from people who still
live in the same town and visit regularly.
Your concern is a very valid emotion.
There are some things to be aware of.
Firstly, be aware that ALS does not affect the mind. In rare cases it can but don’t
be concerned about that. Treat them normally. Talk to them normally.
If they are further along in the progression of the disease they might not be able
to talk and might drool making you uncomfortable. Don’t be, act normal and treat
them normally. Too many people start treating them like a retarded person and talk
to them like they are a baby and are deaf. Don’t fall into this trap, they are not
retarded or hard of hearing. Their mind is the same as it always was. If you can’t
understand them ask them to repeat what they said until you do. Don’t pretend you
understood if you didn’t.
If they are in a wheelchair and not able to function under their own strength, they
are still normal people. Yes, you can hug them and touch them, they won’t break.
But please be gentle, with no muscle strength left a stiff hand shake can hurt.
Talk about real life things - regular topics of conversation, act as normal as possible.
If they bring up the topic of ALS don’t be afraid to openly talk about it. If they
don’t bring up the topic then I strongly suggest you don’t.
Prepare yourself for an angry, scared, person. There are very few people who can
come to terms with their diagnosis and accept it. So, if your visit with them gets
ugly don’t be hesitant to leave. I hope this does not happen, but be prepared so
if it happens you know what you are going to do.
Be relaxed and act as normal as possible, this will be appreciated.
It is very likely they will appreciate your visit and be thankful you came, come
back as often as you can.
Friends and family have a tendency to disappear as the disease progresses. This is
very hurtful so anyone that continues to come around is very much appreciated.