voice banking

Gday all.
Just wondering if everyone has voice issues?
I've been thinking about banking mine whilst I've still got it going on, but I'm really struggling with reading too much into the voice issues I have.

Sometimes I simply cannot find the correct word. Other times it's just trying to get my mouth shaped correctly before speaking, I think.
Yesterday, just for a few minutes, I just couldn't get any word starting with P out. Very weird.

Anyway, thoughts on banking would be awesome.

God bless , Janelle x

Do it janelle. You have nothing to lose if you don't lose your speech. I regret every day not banking mine but by the time I got my diagnosis it was too late.

Vince

Hi Janelle,

This guy is located in the UK but it sounds as though his goal is to help PALS with recording their voice and/or memories - in loving memory of his father who suffered from ALS. He posted this link a week or two ago and his name on here is Olly25. http://facebook.com/mndlegacy

Best of luck and all my love!

I encourage you to bank your voice NOW.

We can never know when we will lose our voice. Being able to speak with a computer generated voice that sounds like me is very important to me. I suspect it is to most folks.

There is no harm in doing it now. As technology progresses and improves over time, you can always rebank your voice, if you still have it.

Once your voice is gone, the decision is out of your hands. I am glad my voice is banked. I can still speak, but my banked voice sounds better than I do late in the day.

Steve

Janelle, BJ has voice banked, it didn't take that long to do. You do need a good microphone and a quiet spot to record in.
Love Gem

I just looked at that gent's FB page (Olly25) and he seems legit. I downloaded the free app he suggested for Iphone/Apple products, called RecordMeNow. More info can also be found at RecordMeNow.org. I'm not familiar with the standard way of voice banking, but can certainly continue researching for you and get back with any updates.

I truly wish you all the best and would like to help in any way possible <3

This is one of those things I haven't really considered. I'm sure, like most people, it's not till your voice is seriously affected that this becomes a priority as there are so many other adjustments- voice banking would be (is?) easy to put off. I'd say go for it now, while you have the energy and the most control of your voice and word use.
Let us know how it goes, and what voice banking system you use. I'd be interested to know your experience.

Do it now Janelle!

You will be reading phrases, so you are unlikely to have the issues of forgetting words and I'm sure you would get to accept or reject any phrase you read if you aren't happy with how you do on one.

Janelle, forgive me for asking... it is now extremely rare I post on this PLS Forum... like PLS is the rarest form of ALS which is rare itself.

Do you have PLS or ALS?

As I recall when you first posted you were very early in the established criteria for the diagnosis of PLS (Pringle/Smith) and it wasn't long ago that you joined the Forum. Now, this soon, you are posting you are losing your voice? The hallmark of PLS is slow progression, often taking years to migrate up to upper anatomy.

Your progression seems to be surpassing the general norm of the progression of PLS... another rarity in the world of rare. If your Neuro is still holding to a diagnosis of PLS... I'd consider a second opinion.

Clearwater, my PLS started with slurred and raspy speech, then progressed to my lower body. My voice is gone and I'm PWC bound. And there's been nothing slow about my symptom progression.

What are you talking about?

Tractor, Al is referring to the fact that PLS is usually described as considerably slower-progressing than ALS ( in fact, PLS is "not usually fatal"). The term is applied to those who have upper but not lower motor neuron dysfunction. There is controversy as to whether it is an ALS variant or a different disease.

Some PLS diagnoses are later changed to ALS.

Clearwater AL! Wow! Haven't heard from him in a long time. Glad to hear from him.

(Sorry, sometimes I get excited.)


Just an observation: If a guy in England banks your voice, will it have an accent?

Thanks for the input everyone. I have indeed decided to bank my voice. I'm very saddened to read that it's no longer an option for some of you. I've look into a few (thanks Meghen) but that's as far as I have gone.

Al, hello, nice to see you here. I haven't lost my voice, nor am I losing it. I do have a few issues, clearly stated in my opening post, but I don't want to get down the track and find I've left it too late.

I'm four months off four years from onset, and according to pringle, right at the end of the document, they state that as long as the criteria is met, 3 years is permissible. Also that whilst rare, bulbar onset does happen. As do asymmetrical symptoms.

My progression is happening but slowly. I'm very rare I guess, because my symptoms are unilateral at the moment, but I'm headed towards the symmetrical. Babinksi and Hoffman don't lie I guess.

My Neuro is a world leader in the field of MND. He recently won a worldwide award for his awesomeness. I travelled across Australia to see him specifically. I have confidence in his knowledge and assessment of me. I'm just glad they decided to share that they are thinking PLS. I don't know how anyone would cope, not being told for five years that the doctors are thinking PLS. I guess not all doctors like to keep their patients informed.

I'm also lead to believe there is a life expectancy attached to PLS. Another thing I'm going to asked my very learned neurologist.

Oh Mike, when I do bank my voice, if G'day, She'll be right, and Mate come out with a pommie accent, strooth I'll be wild I'll give you the tip!

Janelle x

Don't miss banking any of the important swear words Janelle!

"if G'day, She'll be right, and Mate come out with a pommie accent, strooth I'll be wild I'll give you the tip!"

This stuff drives me up a wall! I never know if I've been insulted, praised, or ignored!