Parkinson's Disease Tulip


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Old 07-13-2011, 10:36 AM #11
paula_w paula_w is offline
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Quote:
Originally Posted by Bob Dawson View Post
Paula said:
"I was once a speech pathologist. This isn't going away."
Paula, Did you get a second opinion on that?
Has it been awhile since you were on the other side of the speech pathology divide, helping others for what you yourself now need help with? Maybe there has been new research.

Does anybody out there know?
The devices and apps, yes, but also it would be good to have someone with an overview of speech research and where it is headed.

If there has been any new information or research, it is unlikely to be coming from anything to do with Parkinson's, as speech therapy, for example, would not involve pharmaceuticals, and Parkinson's is still widely defined as a chemical problem requiring a chemical solution, which does not involve the patient beyond swallowing the pills.

But perhaps outside of the Parkinson's game where we all have to chase-our-tails-in-circles, there may have been advances in speech pathology that we have not heard about, because we only find out about Parkinson's.

Is there anyone out there who has a wide awareness of what is going on in the field of speech pathology or therapy? Someone able to say, this worked, this didn't; the research is now looking at what? Especially outside of the Parkinson's Reservation. Is there some other tribe who have found ways to keep on talking? Or is it something that, as Paula says, just ain't going away.

As much as we talk about theory in here I tend to ignore the practical. I have just learned that some of the devices are medicare approved. A bit of good news. Thanks Bob it might be because i quit out of the sheer boredom of doing the same thing over and over that created a natural aversion of getting it myself. Again, not practical. Thanks for the support... it's greatly appreciated
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Old 07-13-2011, 10:42 AM #12
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I am serious about this: is there any sense in us all learning sign language? Or would our control of our hands just be the same problem with signing as with typing or writing with pen or pencil?
Most likely i suppose it will be some computerized app whereby a computer speaks for us.
There must be a lot of research somewhere - when some of us get cut off from communication with the human race, I would think that would be looked at somewhere. Or have researchers not noticed yet that there are patterns of people who are obliged to fall silent?
It would behoove the human race to pay some attention to those who get closed off from communication and then from interaction.
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Old 07-13-2011, 11:01 AM #13
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Quote:
Originally Posted by Bob Dawson View Post
I am serious about this: is there any sense in us all learning sign language? Or would our control of our hands just be the same problem with signing as with typing or writing with pen or pencil?
Most likely i suppose it will be some computerized app whereby a computer speaks for us.
There must be a lot of research somewhere - when some of us get cut off from communication with the human race, I would think that would be looked at somewhere. Or have researchers not noticed yet that there are patterns of people who are obliged to fall silent?
It would behoove the human race to pay some attention to those who get closed off from communication and then from interaction.

sign language only works if the people you are communicating with understand it too. lol my brother used to teach deaf ed and said the same thing. i also think i could not do it as my hands don't work either. i could not use a text device - anyone who has received a text message will vouch for that. Adaptive device seems the way to go but it's one more thing to lose at the airport . my phone is around my neck all the time now.
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Old 07-13-2011, 11:06 AM #14
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What does Stephen Hawking use? Is it something like an enhanced "type-to-talk" version of one of the Dragon tools?
Robert
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Old 07-13-2011, 11:17 AM #15
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[QUOTE=paula_w;78612Adaptive device seems the way to go but it's one more thing to lose at the airport . '/QUOTE]

Right on, Sister !
It's just one more thing to lose at the airport.

Now THAT's what I call an ATTITUDE.
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Old 07-13-2011, 02:55 PM #16
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Quote:
Originally Posted by paula_w View Post
This is a surprisingly debilitating condition. No voice volume. Slurred speech. No one can hear me. Some have tried reading my lips when they are visible. It's pervasive. No one can hear me except some on the phone. I"m clear until I hit the 1200 mg amount of sinemet. Then it's stammering, mumbling, and I cannot be heard.

Does anyone know if there is an app to use on your cell phone that is like a portable mic to amplify our voice? not to record but to project like a portable mic people use for public speeches?

This is the most devastating social symptom so far. No Silverman recommendations please. I was once a speech pathologist. This isn't going away. i need adaptive equipment that is in my cell phone.
When that happens to me I consiously start almost yelling ( as in trying to speak on a voice recognition phone operater)..biting off my words!!! It seems to work but scares the hell out of some!
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Old 07-13-2011, 03:03 PM #17
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Quote:
Originally Posted by RLSmi View Post
What does Stephen Hawking use? Is it something like an enhanced "type-to-talk" version of one of the Dragon tools?
Robert
i think hawking uses products from this company
http://www.words-plus.com/index.htm
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Old 07-13-2011, 07:29 PM #18
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Paula, I know it is a long drive for you, but have you considered getting the opinion of an MDS; Tampa (Dr. Hauser,) Gainesville or Jacksonville.

I only say this because last I recall you only saw a neurologist close to home.
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Old 07-13-2011, 07:46 PM #19
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[quote=digger;786276]Paula, I know it is a long drive for you, but have you considered getting the opinion of an MDS; Tampa (Dr. Hauser,) Gainesvile

yes i seriously thought about a DBS and it's been recommended for a long time. I made the appt for an MRI and with the neuro in Gainesville but then learned i had to go there for all programming.

i was thoroughly evaluated at the NIH. They tried to recruit for a clinical trial there - it would be free and possibly for gait and balance or they are going to watch it on a screen or something. one of them but don't quote me on that. it's a trial so something is new. THey also said they might allow my own neuro to calibrate it. He says he is getting good at it.

i have to check out gdnf possibilities too tho. just have to.
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Old 07-13-2011, 07:55 PM #20
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Quote:
Originally Posted by BUZZZ View Post
When that happens to me I consiously start almost yelling ( as in trying to speak on a voice recognition phone operater)..biting off my words!!! It seems to work but scares the hell out of some!

it sounds like anger if I yell - and combined with my mask face and disappearing mouth [aka bird beak] i am a little scary looking too!

pd zombies
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