Going Out In Public

[Journey]

Hi, new here, been browsing since 7/09. My sister is going thru process of being diagnosed w/Bulbar onset. Progression seems to be rapid. Slurred speech started about 6/09. Difficult for others to understand her today. She is losing her freedom of going out in public by herself because she can not be understood when she speaks. Any advice I can give
her would be much appreciated.

 

[valentine]

I have the same problem, but there are devices out there that can help .I am in toronto and at the hospital they showed some equipments that are. hand held mini comp that you type what you want to say and it speaks for you , there is also ipod touch that is now available for that here, the is also E-triloquist you can download for home use if you have windows xp hope this helps
Kathleen

 

[GlenBrittle]

A quick fix is to get an IPOD Touch and load up Prologue2Go software on it. about a $400 investment unless you want the bigger IPOD Touch's

Its what I have and intend to use (coming too soon).

Also , a self power speaker is a good thing to have if being used in a noisy environment.

Glen

 

[Journey]

Thanks for your input. She has gotten an ipod w/intentions of using it for the speech issues. I guess I am foolish for looking for a quick cure instead of a solution for "right here right now".

 

[cara]

A note pad and pen helps a bunch if she can still write.

 

[serenade]

I just text on my cell phone or play the mime game, it always fun. I always want to fire the person who does not want to take the time to find out what I need.

 

[BarryG]

Boy, do I know what this is about! As someone who can not talk but can still get around on my own I face this challenge every time I leave the house. My solutions include pen and paper, my Dynavox Palmtop3 and my netbook with E-triloquist and NextUp speaking software. None of these, of course, are as good as having your own voice because while most people are polite it is still difficult to interact because of the slow speed.

I was in the computer shop the other day trying to buy what I thought was a simple thing but I couldnt get across to them what I wanted so I finally just gave up, smiled and said Merry Christmas and then left. I now try to avoid stores where I have to ask for something and stick to the ones where I can pick out what I want.

 

[joelc]

I have your problem beat! LOL

I can't go anywhere alone so always have a voice with me. Even that does not always work either. Frustrating for sure. I can still talk a bit but am fast losing my voice as my breathing gets continually weaker. Yes, even with a vent this happens. Unlike most of you I cannot get around on my own as I don't have any mobility left. A true quadriplegic now. YUK. I now have rely on someone else to do literally everything for me. Quite a transition to get used to.

 

[BarryG]

Joel, my good friend, I am so sorry that you are losing your voice. That really is awful to hear especially when I think of our visit and how you talked my ears (and fingers) off. Just shows that no matter what the onset, we all end up to be the same. :-(

Take care of yourself and don't let Christine ask too many questions or I'll have to phone her up and giver her what for in one of my many voices! :smile::smile:

Merry Christmas
Barry

 

[BethU]

Journey ,,, Mid-way through losing my speech, I had business-type cards made up that said "I have difficulty speaking clearly. Please be patient." (On the back, I put information about Lou Gehrig's Disease.) I kept some of these by the front door, and carried them with me. A pad and pen should work for now, but there are all kinds of text / speaking devices, as others have noted.

Now that my speech is gone completely, I wear an "id" type card around my neck that says "I cannot speak, but I can understand everything you say." This helps with most people. (Some are permanently clueless.)

The thing with speech is to stop worrying about what people think or how they will react, and just use all the tools available to us to communicate. And there are a lot to choose from. It's tough, but eventually you get a thick skin. If she is still driving, make sure she carries something with her that explains that she has Lou Gehrig's Disease, and is not drunk.

 

[joelc]

Joel, my good friend, I am so sorry that you are losing your voice. That really is awful to hear especially when I think of our visit and how you talked my ears (and fingers) off. Just shows that no matter what the onset, we all end up to be the same. :-(

Take care of yourself and don't let Christine ask too many questions or I'll have to phone her up and giver her what for in one of my many voices! :smile::smile:

Merry Christmas
Barry

LOL. Thanks Barry!

You would not believe how much I have progressed since your visit. Oh well, what can we do except learn to deal with it and make the most of each day. Life is still good! Just more challenging.

Merry Christmas!
Joel

 

[brooksea]

Make the cards like Beth suggested. If she can still talk, but her speech is hard to decipher, they will help her interact out in public. I made some for my husband and laminated them, punched a hole on one edge and hung them on a string to wear around his neck. Stuff like:

Can you help me?
Where are the restrooms?
I'm OK.
Call my husband, wife, caregiver, etc...at 555-555-5555
Call 911
I have Lou Gehrig's disease and cannot speak clearly, but I can understand what YOU say.
Neuro's name and phone number
Emergency card

There are more, but I can't think of all of them off the top of my head. And on the bottom of almost all of these, I have this: Lou Gehrig's...Google it!

My husband has the iTouch and is still learning how to use it. In the meantime he's using those cards as he Christmas shops and he says most people have really tried to help him out.

Good luck to your sister and your family.