Something I read but didn't listen to..

[KatieNBoyd]

Hello everyone,

When I first joined this amazing group of people there was so much that I just read. I grabbed on to each and every thread like it was the oxygen that I needed as a caregiver to breathe.

One piece of advice was to "bank my PALS voice"

I heard it and I tried (though not too hard because he didn't want to do it).

Yesterday while going online for a friend of ours looking for something I came across a U tube video of my husband doing an interview just last March, for Skijouring (he was the announcer and the auctioneer). I have played it over and over and over. Just to hear that beautiful, strong voice. Tears in my eyes.

I have contacted the man that did the interview to ask him to send me a copy of this along with any others that he has.

Bottom line...SAVE SAVE SAVE even the little things, voice mails, phone messages for our business, interviews and the likes.

You may not think about it in the very beginning but I just wish I had saved more.

Katie

 

[affected]

I so agree.

For my Chris, as bulbar onset slurred speech was one of his first symptoms. We had no idea he would be diagnosed with a terminal disease, not even an inkling!

So the months went on, and by the time he was diagnosed his speech was shocking. No choice to even consider voice banking. I wish I had a lot more video of him talking so I could hear that voice again ...

 

[soonerwife]

I miss my husbands voice! ALS takes so much everyday!

 

[starente15]

I agree Katie. My dad had bulbar and decided not to bank his voice. The only thing that was saved was his voice recording on the answering machine which still breaks my heart every time I hear it.

 

[Vincent]

I banked my vioce with Modeltalker a year ago. My wife thanks me, I don't need it yet, but its there.
Vincent

 

[sleepy]

Bulbar onset it's already not my voice.

 

[lgelb]

I don't have any recordings of my husband's voice, for various reasons, except in my head. That's all I need.
PALS, don't worry, if it didn't happen.

 

[affected]

I have found a lot of PALS really like having their own voice talking from a text to speech app, so I would encourage all PALS to do it! Sure if you don't, it's all ok, but if you have the ability to do it, do it now

 

[Nuts]

My husband just won't do it. He gives no reason, but it doesn't get done. He still speaks fine, but some of those phrases he used to use aren't the same. Sigh. Where is Max when you need him to say, IIWII?