Dx of ALS this past Wednesday - Page 3

rose · 11-05-2009, 07:24 AM

Yes (to the model talker) I started it right before Glen, there is a thread somewhere here about the voice banking. I was surprised that the SLPs don't see more PALS who want to preserve their own voice for use. Perhaps its because they don't know the option exists? It was tedious at times to make the recordings, but well worth the effort. The program is (I think) still in the Beta phase, and is free. The company will build you a synthetic voice, and if you turn off the automatic controls, and tweak settings yourself, you can get something very close to "you". My one complaint with the program is any of the phrases I recorded (often used, or other personalized) would play back too fast if I had the settings on manual instead of auto.

BarryG · 11-05-2009, 10:43 AM

Here is the thread that Rose started about voice banking from last March, it is quite long but has some very useful info.

assistive technology clinic (voice banking)

I agree with the others, bank your voice while you can because you don't want to sound like all of the rest of us with our canned voices.

chefdeborah · 11-07-2009, 03:35 PM

I went to the site and registered. Do I need to wait till I see the person at Mayo the 24th and ask him about VB? Or do I go ahead and do it now. I am getting to where I can barely speak on some days. I think by Christmas, people won't be able to understand a thing I say. This has happened in five months! Maybe six! I just can't understand how this has jumped on me and has taken hold so fast!

I don't quite understand the site, do I talk into the computer? What do I need to do? H-E-L-P!!!!

I am afraid I am going to lose my voice before I can get this done!

deborah

rose · 11-07-2009, 07:47 PM

Deborah,

I actually did not click on the link Barry provided, but I remember most of the specifics, the "how its done"is covered, and should really help you. For example, I talked about the microphone needed, where I got it from, etc.

You should go ahead with this, the Mayo clinic has a wonderful and well earned reputation, but you'll still mostly be on your own with the voice banking process. Their OT will know about the various communication devices available to PALS, and how to obtain one, but as for making your synthetic voice, they most likely won't have much input to offer. Plus, it is nicer to be able to work in your home environment at your own pace. I believe model talker gives advise as to how much recording needs to be accepted to "build" you a voice, but the more you can add over and above this amount only helps make the voice more like your own. Once they send you your synthetic voice, you can make copies of the program and use it on multiple computers. (Such as even a notebook type laptop computer) Dynavox has models which will work accept it as well. ~ and again, this was all discussed in the thread that Barry provided the link to.

Also, don't despair that you feel your voice/speech is deteriorating at a fast pace. Stress makes many symptoms worse, and I'm pretty sure that just receiving this diagnosis dumps a lot of stress on any individual at first. Many PALS find periods of time where their symptoms plateau and don't get any worse, or the progression at least seems to slow down. A year ago I would never have expected to have as much voice left as I do today. Keeping hydrated seems to help with voice and speech, this seems to be true for pretty much everyone. So, less stress, enough fluids, and enough rest, and you will be able to communicate verbally with more ease.

GlenBrittle · 11-07-2009, 08:10 PM

Hey Deborah ,

You will need a good quality microphone. A Gamers headset works well.
Rose is correct. Capturing your voice after t he first coffee is the best time.

Are you using model talker ?

Glen

handinhand · 11-08-2009, 11:47 AM

Hi Deborah, Welcome to your new family. You will find that someone is always here for you. Day and night. I was also dx with Bulbar in Feb of this year. I really do think the first month or so is the very worst. It is like you have already lost the battle??? No, not true....Lots of time to knit which I was so worried about at first. I know I knit faster and have made many things in the last few months.. I am slowing down now a little. I know I WILL be able to get my projects done..... I am so glad you have a good support group,family,friends,church,and your new family here. We are all in this together and we know how you are feeling. I take it one day at a time and make the best of each. Yes, sosmetimes the moments creep in and I still have my crying spells. This is hard . Maybe the hardest thing to deal with outside of losing a child... That to me would be the very worst. Just remember you are not alone and come here often.. It really helps...HUgs, Linda

chefdeborah · 11-08-2009, 08:27 PM

Glen
I registered for the Model talker last night but didn't know what to do after that! I am so alone in this. I don't know anyone nearby that has this and I am depending on yall to help me through it. I did read most of the posts from the other thread and I was "speechless" at some of the puter terms, but I know I can get somone to help me with that part. I know some people who will help me with anything puter. They speak the language!

My speech has gotten worse in the last few weeks and I don't sound anything like my normal voice. I wish I had known what was going on a few months ago, I could have gone ahead and done this. But, I was waiting on Emory to tell me what it was I had. If I was waiting on them, I would still be wondering! Now, my voice is two to three octaves lower and nothing like my original speaking voice. I can't sing, can't laugh and barely can talk some days!

I will take your advice and try to find someone with a gamer microphone. Maybe my daughter knows some kid with one they will let me use.

Thanks for your help! Keep me in your prayers!
deborah

chefdeborah · 11-08-2009, 08:31 PM

Linda
Thanks for your sweet note. I have my times too. Like tonight, the speaker at church was from our place where we helpl place children for adoption (I have problems remembering words due to a stroke in 2003) He spoke on love. I was crying my eyes out by the time he got through. Not only because of the speaker, but because of the emotional problems with this disease!

I went today and bought some more yarn, so I guess I think I will be able to crochet and knit a while longer! LOL!

deborah

GlenBrittle · 11-08-2009, 09:07 PM

Deborah,

I can help you through it. You need the headset first.

Do you have a MSN Live Messenger account ?

Glen

handinhand · 11-09-2009, 12:22 AM

Deborah, I find myself crying in church also. It can be a song or a prayer or maybe someone comming over to see how I am???? The worst is that I loved to sing. No more singing in church or anywhere now. So I enjoy others and try not to cry... It does get easier....I am on med. to take care of the crying but, it just isn't always the disease, sometimes I just plain feel so sad .. It is ok to cry sometimes.... I think it helps??? Linda

chefdeborah · 11-09-2009, 08:06 AM

Glen
I haven't loaded it into this new laptop, but I will. I have it on my PC at my desk, which is upstairs. I will download it on here and let you know when...thanks for helping!
deborah

Laurie H. · 11-09-2009, 01:59 PM

I will be thinking about you and hoping you are doing okay. Is there a specific doctor that you recommend from Mayo? I am on a waiting list for the neurology department, with no clear idea when I will get in. How long did it take you to get in? What symptoms did you have? Can you explain the breathing problems you were experiencing? Laurie H.

chefdeborah · 11-09-2009, 07:22 PM

My GP called down there and asked for me to be seen. It took me about two months to get seen, but when they did, they did the gamut of tests! I went down to Jacksonville, Fl. I guess you would probably go up north, so it wouldn't do my any good to tell you a doctor. I was having problems talking and swallowing. I was also having problems with fasciculations (twitching) and muscle spasms. I just can't get my breath at times. And...if I get around any strong odors, my throat closes up and I can't breathe at all! I had to go to the ER this past Feb. because I couldn't breathe. Neuro at Mayo said they did all the wrong things because they didn't know what was going on. they treated me for asthma! That just made it worse! My throat muscles just close up. Neuro said to just get them to give me a shot of Xanax or Ativan and that would make it okay.

Sorry you are having such a hard time...I know what you are going through. I went to Emory in Atlanta for seven months before I got fed up and went to Mayo.

deborah

chefdeborah · 11-12-2009, 11:25 AM

Glen
You asked if I had a live messenger account. I am putting one on the laptop as we speak...what is your "handle"? I need help with this voice banking thing!
deborah

GlenBrittle · 11-12-2009, 12:50 PM

glenbrittle at hotmail dot com