Annie and all of our support people

[Guest guest]

Hi Annie - so great of you to find us on behalf of your loved one. I

am the one in my family with A and I'd LOVE to share with you some

ideas on what is/isn't helpful.

Didn't Joan do an A handbook that had a section of what to do/not to

do? some of our long time members might remember.

Just some basic thoughts after 20 years of A.

-Just listen and try to understand. A is a VERY lonely disease

-Suggest that your person come here. I can't begin to express to you

how much this group has been a blessing for me and for everyone here.

-If we are having a difficult time swallowing or having spasms -

please do not ask a ton of questions at that time (what'd you eat,

maybe you should eat slower, take smaller bites, etc.) Please wait

until we are feeling better to ask/offer advice.

-Understand that sometimes there is no rhyme or reason, spasms can

literally come out of nowhere. I can avoid all kinds of 'triggers'

and still have spasms.

-be patient and understanding that if spasms hit or if we are having

difficulty swallowing, we may have to leave an event or we may choose

to not go to dinner and watch enviously as people around us eat yummy

food that we can't

This is meant to just be some ideas, from someone who has 'been

around' for awhile. Hope it helps. Feel free to ask questions or get

clarification on anything. We are here to understand, listen and try

to educate.

Happy Swallowing!

- in Va.