BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Since we don't have a gripe site set up yet, I'll just jump in . . .
I was diagnosed with bulbar onset last May, had my first clinic visit last June, and was rushed to a speech therapist in July, where a Dynavox sales rep sold me on the DynaVoxV max. "Must get a speech augmentation device for this woman asap" was the order of the day.
OK, let me count: July, 2008 to February, 2009 = 6 months.
The order is now being revised: "Must get a WORKING speech augmentation device for this woman whenever we can fit it into our busy schedule."
The autumn months were apparently spent with Blue Shield and MDA mud-wrestling over who was going to order the gizmo (UCLA or PCP) and who was going pay what portion and why. It was all straightened out, and large and small boxes from Dynavox arrived in November. With the help of younger generations of the family and after ordering a new computer stand to hold all the accessories, it was all hooked up. Only problem was, I didn't know how to use it.
More mud-wrestling: who's going to train? Insurance company wanted me to disconnect it all, pack it up, and drive once a week to a local speech therapist who has never seen a DynaVox. Presumably, we would spend the first half hour of training reassembling it again, then the speech therapist would say, "How the hell do you work this thing?" and I'd type on my light/writer, "Beats hell outta me," and we'd spend the last half hour packing it up again so I could carry it home and once again reassemble it ...
OK. My blessed ALSA rep who will be made a saint some day, has been manning the phones. Result: Dynavox sales rep comes to house and I get a very helpful training session. Sales rep leaves. Dynavox goes to a black screen with old Dos-style white lettering in a message that says, "Operating System not found."
Cannot turn it off. Pushing power button has no effect. My fingers are weak, so use eraser end of pencil to lean on power button with full strength. Normally, sales rep tells me, this would achieve a cold reboot. I even try the old "control/alt/delete." Zippo. Unplugging it has no effect, because the battery is fully charged. After 3 days, it runs out of power and goes kaput entirely. At least it's now off.
Sales rep comes out. It starts beautifully. We play and practice phone calls, etc. Two days later, I find a black screen with message reading "Operating System not found." Power button does not work. Disconnecting all cables does not shut it off ... I assume that if I let it sit there for 3 days till it runs out of power, that will allow it to reboot again ...
So ... apparently I get to use it for two days till it goes kaput, then I wait till it runs down for three days, then start over.
After exhausting phone calls with sales rep (holding my phone to my light/writer), I am advised that it is a hard drive problem and I need to pack it all up and ship it back to the manufacturer, who will trouble shoot the hard drive.
It's sure a good thing that I don't have ALS or something like that that makes it really hard to use my hands and arms ... oh, wait. I do.
Then there's the BiPap. I will not describe this disaster at length, except to say I have given up trying to get the vendor to cooperate and have just ordered the accessory I need for it (chin strap) online, and hopefully, after three months of waiting, may be able to try it ... at a pressure that my neuro says is too high to start with, but because insurance insisted that it be ordered by my pulmonologist not my UCLA neuro, and my pulmo doesn't know what the hockey sticks he's doing and refuses to confer with my neuro because of pulmo's ego problems (he doesn't get the "team" concept apparently), I've got what my ALSA rep says is the wrong model with the wrong settings.
So at my next UCLA clinic visit in March, I'm to pack the BiPap all up and take it to UCLA and let the pulmo guy there check it out and adjust settings. It's sure a good thing I don't have ALS or something like that that makes it hard ... oh, wait. I do.
ON THE OTHER HAND ... the feeding tube works like a charm! Gotta love a gizmo that runs on gravity.
Gripe complete. :evil:
I was diagnosed with bulbar onset last May, had my first clinic visit last June, and was rushed to a speech therapist in July, where a Dynavox sales rep sold me on the DynaVoxV max. "Must get a speech augmentation device for this woman asap" was the order of the day.
OK, let me count: July, 2008 to February, 2009 = 6 months.
The order is now being revised: "Must get a WORKING speech augmentation device for this woman whenever we can fit it into our busy schedule."
The autumn months were apparently spent with Blue Shield and MDA mud-wrestling over who was going to order the gizmo (UCLA or PCP) and who was going pay what portion and why. It was all straightened out, and large and small boxes from Dynavox arrived in November. With the help of younger generations of the family and after ordering a new computer stand to hold all the accessories, it was all hooked up. Only problem was, I didn't know how to use it.
More mud-wrestling: who's going to train? Insurance company wanted me to disconnect it all, pack it up, and drive once a week to a local speech therapist who has never seen a DynaVox. Presumably, we would spend the first half hour of training reassembling it again, then the speech therapist would say, "How the hell do you work this thing?" and I'd type on my light/writer, "Beats hell outta me," and we'd spend the last half hour packing it up again so I could carry it home and once again reassemble it ...
OK. My blessed ALSA rep who will be made a saint some day, has been manning the phones. Result: Dynavox sales rep comes to house and I get a very helpful training session. Sales rep leaves. Dynavox goes to a black screen with old Dos-style white lettering in a message that says, "Operating System not found."
Cannot turn it off. Pushing power button has no effect. My fingers are weak, so use eraser end of pencil to lean on power button with full strength. Normally, sales rep tells me, this would achieve a cold reboot. I even try the old "control/alt/delete." Zippo. Unplugging it has no effect, because the battery is fully charged. After 3 days, it runs out of power and goes kaput entirely. At least it's now off.
Sales rep comes out. It starts beautifully. We play and practice phone calls, etc. Two days later, I find a black screen with message reading "Operating System not found." Power button does not work. Disconnecting all cables does not shut it off ... I assume that if I let it sit there for 3 days till it runs out of power, that will allow it to reboot again ...
So ... apparently I get to use it for two days till it goes kaput, then I wait till it runs down for three days, then start over.
After exhausting phone calls with sales rep (holding my phone to my light/writer), I am advised that it is a hard drive problem and I need to pack it all up and ship it back to the manufacturer, who will trouble shoot the hard drive.
It's sure a good thing that I don't have ALS or something like that that makes it really hard to use my hands and arms ... oh, wait. I do.
Then there's the BiPap. I will not describe this disaster at length, except to say I have given up trying to get the vendor to cooperate and have just ordered the accessory I need for it (chin strap) online, and hopefully, after three months of waiting, may be able to try it ... at a pressure that my neuro says is too high to start with, but because insurance insisted that it be ordered by my pulmonologist not my UCLA neuro, and my pulmo doesn't know what the hockey sticks he's doing and refuses to confer with my neuro because of pulmo's ego problems (he doesn't get the "team" concept apparently), I've got what my ALSA rep says is the wrong model with the wrong settings.
So at my next UCLA clinic visit in March, I'm to pack the BiPap all up and take it to UCLA and let the pulmo guy there check it out and adjust settings. It's sure a good thing I don't have ALS or something like that that makes it hard ... oh, wait. I do.
ON THE OTHER HAND ... the feeding tube works like a charm! Gotta love a gizmo that runs on gravity.
Gripe complete. :evil: