Sunday Scribbling - Gift of Voice
This weeks prompt is to come up with your own subject, but the catch is: choose a subject you want to know more about, and research it a little. This was perfect timing for me.
When I was diagnosed with Lou Gehrig’s(ALS) disease I went to a support group and did some computer research. Most of it was very scary so I stopped doing it and decided to find my own path. Neurologists either pushed me off on general doctors or needed me for a drug trial. The general doctors I saw had never seen my illness before and I gave two years to a drug trial that failed. So I turned to the ALS foundation and they were offering equipment I did not need yet and encouraged another support group. A Merry go round I wanted off of so I just went to a neurologist once every 3yrs or so to check in. Lou Gehrig’s(ALS) no longer looked scary and I kept up on advancements through websites. I was not ALS it was just a part of my life.
I’m an unusual case because I’m in the 1% of people who survive 16yrs. I don’t buy into percentiles anymore because of variables. I do know people progress quicker than I have and there are mortality rates which I think are damaging. Hope of life is rarely offered. A fellow I know says "ALS is not terminal, life is terminal" and he doing well living on a ventilator. There are electric wheelchairs, feeding tubes, catheters, trach tubes(for saliva suction), bibaps (breath for you at night) and ventilators(breath for you 24/7). Each person deciding when and to what point, as individuals, they will go. I am not at any of these stages yet but I am at a point where I need technology for tomorrow. This is where I found help http://www.asel.udel.edu/speech/
My speech makes me sound like a drunken sailor and I have read of new technology that can preserve my speech as it is today for when I can no longer speak.
"An important part of the overall ModelTalker project is the development of software that assists individuals in recording their own speech and then converts the recorded speech to a ModelTalker synthetic voice. This is a process often called "Voice Banking" and is of particular importance to individuals who are at risk to lose the ability to speak. Voices created with our voice banking software (called InvTool) can be highly intelligible and natural sounding and, crucially, capture recognizable voice characteristics of the person whose voice was recorded. Using InvTool an individual with ALS, for example, can record their speech, convert it to a synthetic voice for use in the ModelTalker TTS system, and then be able to use their personal voice in an AAC device when they are no longer able to speak intelligibly."
It’s experimental and offered to people who want to test it. It will take 10-15hrs to complete but how cool for my family to hear "I love you" in my own voice when I can no longer say it. I already have loved ones pretending they understand me and I find it insulting. I prefer to repeat myself but do get frustrated when asked "what" too many times :) I’m human! My best friend said people are inherently bad listeners. :)
Technology has given quality of life back to people like me. Now that I’m blogging I will need to find a way to type, as my one typing finger gives out. Blogging helps strengthen my finger but my trunk and shoulders tire. Every thing is connected but there are always a way around it. My next project is to find affordable typing technology before I need it. There is stuff out there where you can use your eyes to type, but that research is for another day.
24 comments:
Voice banking, that is such a GREAT idea. A lot of the individuals we serve use Big Mac buttons and other devices but their communication hasn't declined, it has always been compromised. But maybe they could get other voices, like AOL's celebrity "You've Got Mail" wavs:)
I like your point that ALS isn't terminal, life is. It reminded me of the movie the Doctor when a med student refers to a patient as "the terminal in room xxx" and William Hurt's character rips him a new one.
Chris
My Blog
Oh I think voice banking is a wonderful thing. Technology is such an amazing gift.
I hope you find the typing technology way before you need it. I would be so sad if I couldn't read your thoughts here on your blog.
So selfish... I know:)
That voice banking thing is SO cool! That's the first I'd heard of it and what a great idea. I hope it works as well for you as it sounds like it should.
I hope you find a really good typing tool too.
How very, very cool voice banking and I love that there is that ability to capture your voice for your family and also, yourself. I'm crossing my fingers (as I type this) that a good typing tool comes along and you have all of your tools in place, long before you need them.
The idea of voice banking is amazingly inventive and clever. How wonderful! I really hope it works for you, Tammy. And I also hope a typing technology will work for you - because where would any of us be without your voice, either spoken or written??!! You have so much to say and we need to hear it, dear Tammy! XO
Amen to what you have said and done with your life. I think it is too late for my voice bank but you can still get going on it and I think it would be wonderful for you and your family.
lots of hugs
Helen
I found you through Tara (paris-parfait). You are a marvel; your attitude is wonderful. I'm a freelance medical journalist so I do understand about ALS.
I will visit often.
xoxo
Wow, that is amazing! I am happy some people are so much more brilliant than I am, and could come up with something like that!
But, I hate to think of you needing it. I forget sometimes what you are dealing with, because your attitude and wisdom shines so bright!
:)
What wonderful research! I love your voice and I love the idea of hearing your voice till the end of time:) I have missed you, my dear friend, and I think of you often. You are indeed a warrior, and an angel!
I love you,
TD
I think everyone should record their voices for posterity and I am so glad that voice banking exists! As a person with Asperger's Syndrome, I'm extremely sensitive to changes in light and sound. Everyone's voice changes over time. I realize that you are experiencing an illness and not trying to make light of it, at all. I cherish the sounds of people's voices, and one of the mixed blessings of Asperger's is I have an exceptional memory. (Good for replaying nice moments, but bad because I can also replay the not-so-nice.) Anyway, I have listened to my mother's voice change over time from the careful enunciation of a trained actress to an older voice, still clear but no longer careful about her Brooklyn accent. So, though I remember her young voice, I wish I had it recorded so I could hear her speak more than what I remember. So, I guess I find the idea of voice banking one that interests me generally. Aspie's like me tend to be really conscious of our voices generally as we have a tendency to be monotone. What I did, and many of us do, is "stolen" inflections, catchphrases, etc. much the way a good actor does to create a character. It means that I generally think before I speak, sometimes a lot.
You MUST find the typing technology and I believe you will. That technology would be useful to people with many kinds of challenges, so there has to be a lot of incentive to create it. I enjoy your site a lot and cannot imagine not being able to read it.
That is a good idea and this is a good piece on research.
Life is terminal is true and we should all recognise this. No one knows how long they've got. So shouldn't we all be doing whatever we can to leave something worthwhile to survive us? That'll be the blog, then.
I hope if, when, you, any of us, have to survive the death of our functions that we accept the experience with dignity.
Love to you.
Voice banking sounds good Tammy! Now, find that typing technology too before you need it, we will miss you too much, YOU are in our hearts! I'll seeeeeee if I can find something too tomorrow, well it is tomorrow! lol it's 3;32 am Sunday morning! zzzzzZZZZZ o! Happy Sunday sweet girly! xooxoox love and prayers time:)
You inspire me so much Tammy,voice banking is fantastic idea. Technology blows your mind sometimes doesn't it?
What you say is sooo true. Our daughter only sees her Mom “walk” on old video tapes, and they are treasured. Without intending to at the time, those Pre-MS video tapes preserved not only walking but talking.
… Patti’s MS symptoms give her the same drunken sailor speech PLUS intermittent inability to control volume. We’ve tried unsuccessfully speech recognition technology and to their credit Verizon and Microsoft have been wonderful and patient. In Patti’s case her inability to reproduce consistently the same vocal sounds, pattern, volume, etc has baffled speech recognition technology. Now with her cognitive dysfunction interacting with a machine is just too weird for her.
Patrick
http://journals.aol.com/daddyleer/CaregivinglyYours/
Tammy, your spirit is brilliantly intact, regardless of all your other losses, and like everyone who visits you daily, I am so very thankful. I'm also thankful that you rejected the "numbers," all the actuarials that breed discouragement and fatalism.
This technology is SUCH a wonderful gift. You can continue to own your voice and share it with those you love. I pray for wisdom, inspiration and enlightening in the brilliant minds of those who are working on more technology to help you live through expression.
God bless you, Tammy - I pray that every day for you at the end of reading your post.
Wow! As much as I often gripe about the frustration of technology gone awry (there are days I swear the computer has a vendetta against me, LOL), it really is some amazing stuff. Banking a voice is a genius idea!
I ditto everyone's comment about hoping you find some good typing technology. I really enjoy your blog (found you through Sunday Scribblings, One Deep Breath Haiku, and Poetry Thursday), and would miss it a lot if it ever went offline.
BTW, thanks for stopping by my blog :)
I'm always happy to be living in these times, and the prospect of voice technology is yet another reason for that. Wow. Paul Simon had it right (as songwriters so often do), these are the days of miracles and wonders...
:)
J
What a strong, amazing person you are to keep such a great attitude (which i do believe helps our bodies). And I love your honesty about being annoyed by people if they don't say what or if they do. So human!
Good luck with that new voice technology. It sounds really neat!
Thank you so much for sharing this information. I'd never heard of voice banking before but what a wonderful discovery! I'm sure your loved ones will cherish the effort you're putting forth now so they can continue to hear your voice in the future.
I'm so glad you found voice banking and I'm praying you'll soon find other technology for typing. Your independent spirit is amazing!
Thank you again for all your kind comments - they mean more than ever, knowing how hard you have to work to type them. Thank you!
((hugs))
Tammy this is a great post. Technology is pretty amazing, isn't it! And I too hope that you can carry on typing beyond when it is physically impossible. What comes over in your blog is that you are a beautiful, spirited individual, whc kind of like you said, lives with this illness but is not defined by it. Thank you for sharing your story. God bless!
Having lived in other countries as well as having taught young children I have honed my listening and body reading skills so that I can usually understand someone who does not speak clearly. But I do reach that point of indecisiveness where asking "What?" one more time can be too much.
wow, voice banking - what a fantastic idea! i am constantly blown away by how clever human beings are to come up with such life-enhancing ideas - technology is amazing!
sending lots of hugs and kisses to you, dear T - as always, you are an inspiration xx
this is an amazing advance - and you are an amazing inspiration
with love x x x
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