beginning of slurred speech, what do I need to do?

[Sequoia]

Stu, that is good news. I am a bit overwhelmed right now because i am also dealing with trying to find a place that will take me in on SSI. Its a complicated story, but I am now interviewing a retirement place for religious sisters. I will call you in a few days, once Im over this hump.

Thank you, all of you, for all your good advice! This Forum is just tops with the out pouring of goodness and support! I am taking copious notes and this weekend am going to an ALS Equipment Fair, to actually look at different technologies and give them a try. Also looking into wheel chairs. My brain tends to shut down on me when I have to make such big decisions as to whcih device would be best for me.
I know Y'all been there and done that.....so it really helps alot!

 

[Judith]

Sequoia,
I hope you get into a retirement home that you simply love; and hope you find a SGD at the ALS Fair that will meet your needs.

judy

 

[Sequoia]

Stu, this is great news. I will be in touch. Im working on voice banking right now. Any body else done this recently who can tell me about the latest technology in doing this? I have a friend who has a profession recording studio, will to help me record. Is it best to do directly onto computer, or is having it on a mp3 flash stick better? I dont know what any of this means, but Ive heard it mentioned at an als support workshop recently.

 

[Judith]

Sequoia,
I wonder if joelc can help with your question. He seems to be "technically" savvy:idea:

Judy

 

[joelc]

There is voice banking software you can download for free. I just tried to find a link for it but for some reason I can't locate it. Maybe someone else has a link. I will keep looking and if I find it I wil post it.

I did try the software several years ago and was not impressed with it. NextUp Talker is a far superior program and comes with a very good voice. Unless someone has had better success banking their own voice I would suggest going with NextUp Talker.

I also think there is a program on the ALSMatters.org website. You might want to have a look.

 

[Sequoia]

THANKS jOEL, ILL CHECK IT OUT. I'd like everyone who reads this thread to go to the ALS Guardian Angel web site, and join up! Because they have found me a dynavox at no costs! They are really an amzing bunch of angels who make dreams come true for those with als and their families, fulfilling wishes big or small. I seem to be getting miracles in my life right now which tells me God is really listening to all of you who are praying for me. Now I will have time to fool around and learn how to use this gizmo. That will take a miracle cuz I am a techno idiot!
My greatest fear of not being able to communicate my thoughts and my feelings to others, is moving now into how do I do this in the best possible way. Joel, I have a friend who has a professional recording studio and he will help me do the voice banking in a great way. Then I can hear it and make some choices. When i was at the als workshop recently a guy there told me that he worked hard on getting the right emotions into his recordings. When they demonstrated the dynovox with a "canned voice" in the section for having an argument, this high pitched soft polite voice was saying "I dont like that!" but who would believe it since it was sooo nice? Cracked me up. lol

 

[BarryG]

That is the biggest drawback to an artificial voice, the lack of any emotion or inflection. Everything comes out like from a robot and everything is a statement. I doubt that voice banking would be any different though except that the robot would be talking in your own voice. I often wonder if anyone remembers what I used to sound like, I can't. I have to call our phone number and listen to the recorded message to remind myself.

Good luck with whatever you end up with and thanks to Stu for getting you a dynavox.

 

[Sequoia]

Thanks Barry, I think I am going to ddo a bunch of sessions with my own voice that i can play separately from dynabox. Maybe an introduction to who I am, for new people I meet. At least a few intros that sound normal, and then switch to the box voice, be it mine or another. I will play around at this recording studio. My friends want me to record my life story, because they all say that I am a great story teller, and they will miss this. Im thinking of instead of writing or emailing now, I may record letters and send to my friends so they have my voice later. My Dadd before he died, was blind and hard of hearing so he made me a ton of voice letters, one alsmot every week, so now I have him on tapes and any time I want to hear him, I listen to them. It is very profound. The human voice is so intimate. It is such a great loss, isnt it? But I want to focus on giving God praise now with my voice, for the gift of speech, and as my therapist said to me: "Every disability has a language of its own" I think for those of us who have lost speech, the heart must speak for us, perhaps thru our eyes. We are forced to communicate in other ways than words. There certainly is something to this intuitive knowledge that especially husbands and wives share, or even sisters. brothers, close friends. Id like to hear some stories about this. it would be hopeful. My sister and I can complete each others sentences, we are so on the same wave length. I also read a book by a guy tha was blinded from early childhood, how he could intuit the character of people even before hearing them speak. He was in the French resistance underground and they used him to say yea or nay if someone wanted to join their group. What is the language of one with ALS?

 

[BarryG]

There is currently a commercial playing on Canadian tv advertising free long distance between customers of a telecom company. Whenever it comes on I get very sad because the commentary is:

"It is the most distinctive thing about you, your friends long for it, but no one can see it, it is your voice"

I understand that they are just trying to sell their services to new customers but it still bothers me. I just have to put it into the same category as all of the food commercials and carry on.

The voice recording for whatever purpose is a great idea, even if it cant be used for voice banking. After I was diagnosed and before my voice went AWOL my son and I drove around my old neighborhood with a video camera and he recorded me talking about my old schools, work, houses, etc. Memories are such fleeting things and I wish I had done this with my parents before they left us.

I don't know about a language of ALS but everyone who I deal with face to face has accepted my new voices even if I am a slow talker. I still don't like to talk on the phone though, too much pressure.

 

[Sequoia]

Barry, I "hear" you loud and clear! The loss of voice is a big one. Truthfully I cant even go there yet. But I want to make myself do what I need to do now, so that when it happens, I will at least have done all that I can do! I think the loss of my voice will be a tremendous grief for me. I'll pass thru that valley like you and so many others here have done. What would I ever do without this kind of emotional support from those who have already passed this way? Yet, being a naturally hopeful kind of gal, I did meet a fellow at this als workshop who told me he did all the voice banking, was glad he did, but that then his voice never progressed to total loss. its been ten years. He slurrs but was totally understandable. I'm hanging on to every thread of hope, but I know it just depends on where the als monster decides to nibble on motor neuron cells. Truely it is Russian Roulette, no?

 

[LizT]

Let me tell you my story-
When i first met Ray, he was locked in already. No movement. No speech. Let me tell you, it was almost a magical moment for me.
The energy this man has is truly felt by anyone that shares space with him. And when i say energy, i mean his inner energy, like his aura almost.
When I looked into his eyes, I saw him. The chair, the trache, the drool, all of it, it just disappeared. I saw this man for who he was, not what disease he has. And that started my journey with him. Now, almost 3 years later, I am dead-set in love with this man and getting ready to move in with him next spring. There is talk of marriage too.
Now, dont get me wrong, it is not all roses. There are times when it is all so overwhelming and i cannot handle it. When i allow myself to think of all that i am missing out on, its hard. But, all I have to do is look that man in the eye, and watch the smile on his face grow wider and wider, and i calm down. I am reminded that he is missing out on those things too. I have a choice, he does not. He did not choose to have ALS in his life, but I did. And no matter what happens and no matter how difficult it gets- we are in this together.
I tried to go away. I tried to not take care of him. I tried to not love him. LOL. NOT POSSIBLE. So, in a way, i dont have a choice.
He is the man of my dreams and i intend on sticking around until the end.
Ive never heard his voice. Ive never felt his touch. But i have been around him so much and for so long, that just looking at him tells me so much. We have a connection.
He doesnt have a computer that speaks for him. He uses eye movements to spell everything out. so when he is "talking" to me, its my voice i hear. no emotion. no inflection, like Barry said. At first, it was hard to deal with that because yes, he could tell me that he loved me, but its almost like reading it. its all text. So for us, sometimes there has to be a little extra reassurance so he can really get his point across.
My point is- Barry, though you may feel like it is, your voice isnt you. People who truly care and the ones that are worth it, will stick around and learn your new "voice". They will know how to read your energy. They will learn how to read your facial expressions. If you think about it, so much of our communication is non-verbal anyway.
And Sequoia- where theres a will, there is a way! if you are bound and determined to make sure that people can still listen to your thoughts and ideas, then it will work out for you. there may be some difficulty with strangers, but the people who mean the most to you and stick by your side, they will go along for the ride with you.
I just want all you PALS to know that there are still great people out there that will completely accept who you are, the old and the new, and i dont ever want you to feel bad about any of that. you can still have meaningful relationships. you can still be heard. you still count. and i still love every single one of you.

 

[Sequoia]

LizT I am crying so hard I can barely see the screen....what you have writen here is pure love and you have touched me so deeply by this love...yes, :the gaze of the Beloved" that is the language of ALS. Can I have your permission to share what you wrote with my therapist, the one who said to me : "every disability has a language of its own"? I hope that every pal who reads this, will be encouraged to let love speak, without words. Liz, you are every pals kind of treasure, I am so glad you are here and that you have shared. You have made me feel hopeful at a hopeless point on this als journey. I would so like to meet your pal! He is a very special man, and I want to model my journey after his. No, its not about easy, its about self giving love. All pals want to be this for others, but cant "do" anything. It isnt about doing, its about being, and loving! I think people like your pals are huge generating powerhouses of love, self giving love.God Bless you!

 

[joelc]

Beautifully said Liz. Actually 93% of our communication is non-verbal. Communication consists of facial expressions and body language. With a PALS who has no body movement, like me, there is still the facial, the twinkle in your eyes and the smile on your face.

My brother and I can have a conversation without saying a word, we know what each other is thinking. It was an interesting revelation because we did not know each other at all until I was 50 years old. We went our separate ways and never spoke, I was 7 when he left home.

In other words, you do not have to talk to communicate with someone.

 

[BarryG]

Thank you Liz, beautifully said and I can feel the love you have for your PALS even from here!

I know that my voice is just a small part of who I am and I don't feel any less of being who I am because I can't speak but over the 52 or so years that I had a voice of my own I kind of liked it.

In the past couple of years I have learned to say "I love you" with my facial expressions and I have also learned how to shoot lightning bolts from my eyes! We get by without my real voice but it is still not easy and does have it's frustrating moments.

 

[LizT]

Sequoia- of course you can share my story with your therapist- or anyone for that matter. im glad it made you feel so good.
Joel- thank you. and Barry- Im glad to hear that youre learning how to be the new you. i know its not easy and i know it can be frustrating. I wish i could make my love for all of you be felt thru this computer screen.