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BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,646
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I got one of those steel disks you wear on a chain to warn medical attendants of medical problems they should know about.

It was really a piece of c*** ... I've had pet tags of better quality. The engraving is tiny, you can hardly read it, and even with info on both sides you can't get much data on it. Plus, if 90% of the people in the world don't know what ALS / Lou Gehrig's Disease is, it's not going to help much to tell them I've got it. Plus which, now, the disk has started falling off the chain. The attachment is not secure, and I decided it's not worth fussing with.

SO ... I made up a fake "employee ID" card, with a photo. Looks kinda classy. I put on it:

I CANNOT SPEAK
or SWALLOW.
But I can understand everything you say.

I have ALS (Lou Gehrig's Disease)
Also Heart Disease.


On the other side, I have my name, two emergency contacts, and a note that I have a feeding tube. I got it laminated at Kinko's for $1.50

I figure the most important things people need to know about are my speech and swallowing ... If I'm in an ER, I don't want someone trying to give me a pill with water or thinking my inability to speak is something new.

I attached it to my old employee ID lanyard with the company name all around it, and it looks pretty good. A small low-tech solution to a medium-sized problem.
 
Oh Beth, I really really wish you did not need that tag at all. Seeing it in bold like that got me all choked up. That said, I think that you are brilliant and positive and so helpful! Thanks :)
 
Beth,

A stroke of genius! What a clever idea!

Zaphoon
 
Beth-

Yes, that's a wonderful idea! We don't have a Kinko's here, but I bet I will find someone to laminate it for me!

hugs, and cheers!
-brenda
 
Brilliant idea again! You're mind is simply amazing! It is straight to the point and delivers the facts to those people who don't have a clue what this disease is!
 
Great idea Beth. Keep coming up with them. We need all the help we can get.
 
This is the kind of creative thinking we can count on from you, Beth. :grin: good work!
 
I was gonna send off for one of those medic alert things (not cheap), but now thanks to you Beth, I'll use the custom laminate idea for my husband!
 
Great idea Beth! I need to do that and add the emergency info to my cel phone. Does anyone remember what the letter combination is - I can't remember.

Sharonca
 
Yeah ... ICE ... In Case of Emergency.
 
Excellent idea. I'm posting for the first time, tho a reading member for months. The hardest part for me is making sense of how the forum works. Thanks to all for the odds and ends of fabulous advice. We hope to offer some ourselves. I'm a caregiver to my darling husband diagnosed a year ago with bulbar onset. We are coping well. Blessed with family, friends and the Harvard ALS Clinic at Beth Israel Deaconess in Boston. Geesh I wish this thing had spell check.
 
Beth: Great Idea, sometimes we just overlook the obvious. I will make one for myself.
Welcome Leslie, sorry you had to come here. I was recently diagnosed with Bulbar onset. I am coping pretty good, but I do have my moments. Fear of the unknown, and fear of the known. But today, I can still eat, carefully, I can still speak, although it is getting worse and it is one of those things that is hard for me to get past. How are you two coping well. My husband and I don't really talk about it and I don't know why. He is of the mind that we will wait and see what happens like this might go away. I have a lot of stress worrying about what we will do when I can no longer work. I need to know the plan and he isn't in to making a plan. Let us know how you are coping.
NancyS
 
Leslie, welcome to the forum. I was diagnosed with bulbar onset in Jan 08 so I do understand what you and your husband are going through. It is a difficult thing to get try to come to terms with a constantly changing disease and I'm glad that you are there for your husband and for us too!

Nancy, I definitely know what you mean when you say "I do have my moments". I have a dynavox that I use but probably not as much as I should because pretty much nobody can understand me anymore when I speak. I keep thinking that what I have will just go away and one day I'll just wake up and be able to talk like a radio announcer and eat hamburgers and pizza again. I guess what I'm trying to say is hope is one thing but being realistic is another. So I agree with you that you do need a plan or at least talk about it. Take care of yourself.

Barry
 
I did the same, many months ago, printed on business cards and laminated. I said...Please speak to me normally, there is nothing wrong with my intelligence or my hearing, my illness means I cannot speak.

I will now be adding that I have a feeding tube as I cannot swallow. I think this should ease problems when being body searched when going through airport security

Another thought which I really must get on with, is for my husband saying
In case of emergency, I am the main carer for my wife, who needs 24/7 care, please contact (tel number) to get assistance to her. Again that will be printed on business cards and laminated.

My husband only goes out for about half an hour to local shops occasionally, but who knows what could happen when he is out. We also have a call alert direct to his cell phone should I need him if he is outside washing the car or cutting the grass etc
 
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