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mike b

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Joined
Nov 2, 2008
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17
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Loved one DX
Diagnosis
06/2008
Country
US
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NM
City
Rio Rancho
Hi,

My wife Lynn was diagnosed with bulbar-onset ALS in June. She is now 18 months since onset. Her speech is deteriorating but still mostly understandable. We went to the ALS clinic at the University of New Mexico hospital and tried several speech devices. We then put in the Dynavox request to our health insurance provider but they rejected it because apparently they don't pay for speech devices. MDA is willing to pay $2000 toward a new device but will not pay for used evidently. We found a Dynavox 3 Palm augmentative speech device on ebay for $1400 but can't afford this right now. Does anyone have a speech device they would be willing to part with for less money? For right now, we are using a white board.

Thanks

Mike B
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
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California
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Los Angeles
Mike ... I'm so sorry about your wife's diagnosed. I hope it is a slow progression.

There was a long discussion of speech augmentation devices on this forum a few months ago, with lots of suggestions of free download programs for computers, which might be helpful to you. Use the Search function. Lots of good info.

Also, check with ALS Assoc. They loaned me a "Light/Writer," which I'm still using. It is not as powerful as a DynaVox, but has been extremely useful. It has a small two-way screen, so that as your wife types, the person across from her can read it. I find that I don't have to use the "speech" part of it very often, because the person I'm "talking" to can read it. You can also store phrases in it, and I have used it on the phone, by storing phrases ("I need to make an appointment with Dr. Whosit") and holding the phone over it and pushing the "speak" button.

Mine doesn't have a carrying case (I don't know if any of them do), but it only weights 1 1/2 pounds, so I can carry it with me when shopping, etc. My DynaVox (which I just got, and haven't started using yet) is quite heavy to carry around ... 14 or 16 pounds. And it requires space to set up. It will be much more useful for someone in a chair, but the Light/Writer is really handy right now because it is small and light and "user friendly."

Good luck.
 

kelly

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Did you check with your local Als center, they usually have a loan closet. Give it a try. Good Luck. KR
 

JasonMc

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What insurance company are you using? Have you contacted DynaVox for assistance with insurance/funding? They are excellent at providing help in that area. You also may want to try the new DynaVox EyeMax.
 

skline6381

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Help

Mike,

I am so sorry about your wife. I work for the Prentke Romich Company, we manufacture augmentative communication devices. If you could contact me at my place of business I could possibly assist you with getting your wife a voice. Please email me at [email protected] or 1-800-262-1984 ext 220.

:) Thanks,

Sandy
 

patientdad

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Mike,

Check out www.digitalvoicetech.com I bought this device for my autistic son who is non-verbal with severe autism. We have a dynavox for him, but it is bulky and complex. This software is download on a palm and is customizable and right now until Jan 15th, it is only $199 which is half off. I was skeptical at first because of the price, but this thing is awesome. My son uses it twice as much as the dynavox because it is simple and so portable. Check out the website. You can't beat it for the price.
 
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Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Mike,

I don't know if your wife is still in need of a SGD, but I tried Dynavox and Words Plus products. I picked the Words Plus "Say-it-Sam Communicator Version 2" over the Dynavox Palmtop. It weighs 14 oz. I take it everywhere I go. It is not bulky.
Is your wife on Medicare due to ALS? If so, and she should be, they will pay 80% and MDA will pay up to $2000.00 of the remaining amount, or her supplemental insurance to Medicare should pick up the remaining due, so there should be no out-of-pocket for you.
Your wife will need to be referred to a speech therapist by her neuro, or primary doc. Then the speech therapist will make an appt. to have reps. come out and demonstrate their SGD's to your wife (at the speech therapists office). Once you decide on the SGD you want, the speech theraptist will then write his/her report and send to Words Plus (or whoever you pick) to process. Words plus and Dynavox have people that can walk your speech theraptist through all the paperwork that Medicare will require.
I have Bulbar onset PLS and Words Plus was great in helping my speech therapist get me my device.
Words plus website is www.words-plus.com
I know you said that your insurance rejected paying for an SGD, but please talk to DynaVox or Words Plus, because their Medicare Funding Dept., knows all the ins and outs of getting insurances to pay for these things. They will call your insurance and tell you before you purchase, if your insurance will pay.

Hope this is helpful,
Judith
 

bowl3001999

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Learn about ALS
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Palmtop 3

I don't know if you are still looking for a Palmtop 3? My son has a neurological disorder and used the Palmtop 3 (it's a year old, in excellent condition). He now has another speech device and I'm looking to sell it at a very reasonable price (really what we paid out of pocket). If you are interested, please message me on the forums.

Wendy
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
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PALS
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06/2008
Country
US
State
any
City
any
Wendy-

I was just wondering if you could describe the palmtop3 in more detail on the forum. It might me very helpful.

And no one can message you about it until you've been around here for a while,
Just a thought,
brenda
 

bowl3001999

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Brenda, I can try...but I'm better off quoting Dynavox's website, and saying to go here:
Editorial.aspx


DynaVox Technologies of Pittsburgh, PA, announced the release of the Palmtop3 and iChat3 Impact communication devices. Small and exceptionally portable, the Palmtop3 and iChat3 give individuals with significant speech, language and learning disabilities the tools needed to communicate quickly and easily in virtually any environment.

I mean to have her reply to my post, not send me a message personally. Thanks for letting me know that!
 

brendapals

Senior member
Joined
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Messages
953
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PALS
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06/2008
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US
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any
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any
oh-thanks Wendy,
I hope that will help her
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Hi Wendy and Brenda;

I've copied some of the specs for the Palmtop3 from the Dynavox website and pasted them below.


Rugged, shock-absorbing ergonomic shell.
Includes integrated battery and high volume speaker.
Dimensions: 6.1 x 3.1 x 3.6 inches
(156 mm x 79 mm x 91 mm)
Weight: 14 oz. (397 grams)
Display: Fingertip sensitive touch enter/exit 3.75” color indoor/outdoor
Battery/Runtime: Integrated Lithium battery set.over 8 hour run time (continuous use)
Power Charger: AC 100-240V 0.4A 50/60Hz DC 5.4V 2410mA
Operating System: Windows Mobile 5.0
Speech Output: Acapela® synthesized speech
DECtalk® synthesized speech
Digitized speech and sound
Access and Selection Methods:
PALMTOP3 SPECIFICATIONS
Enhancements:
• New, more natural sounding adult and child voices
• Very sharp, clear screen
• Clearer sound
• 7 new page templates with buttons of different sizes on the same page
• Custom stylus
• Battery drain protection
MODEL NUMBERS
Palmtop3 – Standard 800160
Palmtop3 – Dedicated 800161
Will Medicare cover Impact? YES!
The current Medicare coverage rules indicate that computer-based communication devices can not be covered unless access to all non-communication functionality has been blocked. For this reason, we have “dedicated device” versions of our communication aids.
Color touch screen with touch enter/exit modes.
Visual and auditory scanning (1- or 2-switch)
Extended scanning options • Morse Code
Enhanced keyboard support
Input filtering (Sticky/Filter keys)
Audio button preview • Scanning


I have had one of these for about 10 months now and use it as my main speech device and with my wireless internet I regularly use it for emails and for visiting the forum.

Barry
 

lmaire

Member
Joined
Mar 21, 2009
Messages
16
Reason
Lost a loved one
Diagnosis
07/2004
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US
State
Illinois
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McHenry
I have a DV4 you can have-- SORRY, GONE.

I have been looking for someone to donate my husband equipment to, I will mail it to you I have the original box and carrying case.
 
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brooksea

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HM
I'm interested lmarie! I cannot private msg you as you haven't posted enough. Please post back and I will try to get contact info to you.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
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10/2003
Country
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On
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NW of Toronto
CJ you should be able to pm her now.

AL.
 
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