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BethU

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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:
 

rose

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Hold open the flap, I'm stepping into the vent tent with you....

Beth, I'm just sitting here shaking my head. There are no words (fit to post on a public forum) to describe the ineptitude you're having to deal with. I think you should not have to wait until March to get your BiPAP machine calibrated correctly, (obviously) and wondering if perhaps the UCLA clinic can recommend a local doctor in your insurance company's network who is: A) familiar with ALS and hence the reason you need the BiPAP, and B) can just write the order (probably would take an office visit first) to have the machine set properly. I agree that you did the best thing in just ordering your headgear accessory, it shouldn't be like that, but then none if it should be like it is. Option C would be to get the MDA or ALSA to help you just take the damn machine over to UCLA before your next scheduled visit, I know the MDA here has offered transportation if I need it, I'm sure that California would be the same.... that way, with a little assistance perhaps it would not be as exhausting. ... or, could you get your clinic visit moved up?
 
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brendapals

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save some room for me too!

Beth,
Once again, bless your heart.

Isn't it amazing the crap we have to go thru to get all of the "crap" we have to have? My dynavox is in my closet in a bag, haven't had it out since about mid Nov 08. Just too much junk to carry around with it, and I did notice people don't like to wait for a response.

I'm just p*&^'d off because I have to work on getting all my taxes together sometime this weekend, organize all the paperwork for the appt with my lawyer on Mon to file an appeal to SSD, figure out how to put a 10lb stack of potatoes into a 5lb bag! (in other words, pay a bunch of bills, just not all of them!), and anything else that comes up!

The best part of my day tho-a nurse I used to work with came over to my son's track meet today, watch him jump, and yes, he jumped 13ft 6in, which ties his personal best, anyway, she told my hubby to take care of our other 2 boys, and she took me to lunch!

I'm happy to say we ate at Tumbleweed, had strawberry margaritas, I didn't get choked at all, and I'm able to sit on my deck tonight in shorts and tshirt, about 50 degrees now.
The snow and ice are gone, just a bunch of mud.

My, I think the tequila must be playing tricks with my brain, I'm kinda all over the place,
sorry.

rose-if Evan can jump 14ft in any of the next 4 track meets, we get to go to Boston sometime at the end of March!
take care ya'll
-b
 

BethU

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Rose ... isn't this ridiculous? I have an appt with the pulmo in a week, so I'll get some answers from him. Paul can carry it all for me. I can see how to adjust the settings, but will wait till after the pulmo visit to play with it myself.

Brenda ... I hear you ! I have declared February "crap month," and vowed to have all the paperwork (including taxes) done by March so I can restart my life. What is bugging me most is that my hands and arms are going ... how many months I still have to hold a paintbrush I don't know, but I'm sure it's not many ... and I am having to spend these relatively "good months" on paperwork, paperwork, paperwork and fighting with insurance and vendors.

The Dynavox is supposed to be new, by the way ... so why do they have to trouble-shoot the hard drive? Methinks this is a reconditioned machine passing for new.
 

nspoc

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Hi Beth-

My PALS has a Dynavox and it is a LOT to learn. We go through the Rehabilitation Institute of Chicago, not our ALS clinic. I know you guys in LA have a world class rehab place - Rancho something. Maybe you can get referred there.

Also - on another thread I responded to you that I have lots of experience with UCLA - worked there, my PALS worked there, was diagnosed there before moving in with me in Chicago. VERY complex place, care is all over the map from outstanding to terrible. Have a friend who tried the pediatric neuromuscular clinic through MDA and found it to be a disaster.

Maybe you could look into Cedars. They have a relatively new ALS clinic - but I have only heard from one person about it - she found it great for her.

I have to second other poster here - your care is horrendous! We had to transfer from one ALS clinic to another in Chicago for better care. After that we had to find a new pulmonologist and vent company - both from the ALS clinic were not working FOR us.

All that changing is very stressful - made me feel like the inadequate one - but it was worth it because we are now in a good place.

You are truly fantastic - and I am very sorry you have had this experience. I wish I could be there to punch a few lights out for you!

About the Dynavox - you need a wheelchair or over the chair/bed mount for the module. The dynavox just clicks in place and then you can go anywhere with the wheelchair version. The other mount can be on standby and the unit can be switched over for use with any chair, in bed, etc. Makes this heavy unit MUCH more useable. The company that carries the mount is Daessy - they have a website.

Medicare paid for one mount, we will pay for the other. Also - For $55 this unit can be converted to a full function computer with email. It is always a computer, but the $55 fee allows you to unlock the computer access. Medicare will not pay for the computer function - that is why it is locked.

I don't want to go on and on - but I have more advice for navigating the system if you would like. We NEVER have to go through Dynavox - our Speech Therapist at the Rehab institute does everything! My experience is that our ALS clinic and our other support people know little to nothing about this - it is just dumped into your lap to figure out.

My advice - look into switching clinics and find an excellent rehab center!

Good luck - Beth
 

sharonca

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Wow, Beth. My bi-pap works like a charm and I really don't care for the chin strap. Really doesn't keep my mouth closed. Maybe it will work for you.

I know that getting an appt moved up at UCLA is not easy. Maybe you can call Andee and see if she can help you out? You do know her, right?

Your posts are fascinating to read ... I still think you should write a book.

Sharonca
 

BethU

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Thanks, all ... Beth, I remember your post before about working at UCLA. I would love to try Cedars (went to a seminar there last summer and was very impressed and have heard good things about how responsive they are, etc.), but UCLA is the one with the contract with MDA who is paying for all this. Any info you can give about working the system would be GREATLY appreciated.

I'm not in a wheelchair yet, but having my DynaVox mounted on a chair would make it much more convenient.

Sharon ... the full-face mask blows the air into my mouth, and within a couple minutes, my mouth and throat are burning from the dryness. REALLY painful. One problem is that the pulmo ordered the settings too high to start with. My neuro says he would prefer to ease me into it with more tolerable settings. (I am convinced I am the only ALS patient my pulmo has ever seen.) I'm going to get setting recommendations from Dr. Graves before I see the pulmo again next week. Also a problem, I sleep on my stomach or side, and the full-face mask is really uncomfortable. The therapist left the nose mask by mistake, so that is why I plan to start with that, when my chin strap arrives. Even with the chin strap I think I will have problems, as I can't hold my lips together any more ... atrophy ... so it will take something major to force me to breathe through my nose. Also ... the make/model of the BiPap is not the one the ALSA rep said we must have.

But my niece got my DynaVox working ! Apparently it takes more strength than I have normally to push the on/off button. But if I use an eraser end of a pencil and lean into it with all my strength and hold it long enough, it will do a cold reboot.

About that book, Sharon ... I can't write it because I don't know how the story is going to end. I'm still convinced we're all going to be rescued at the last minute by a brilliant researcher, who will be played in the movie by Brad Pitt. :razz:
 

Marjorie R. Wilcox

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Dearest Beth.... Love your Brad Pitt comment! You're a real gem!

Rick uses a chin strap and it keeps his mouth closed... when it doesn't slip off, that is.
Also he got his bipap from his pulmonologist who set the settings for Rick, and Rick doesn't mess with them at all. Man, are they strong!

Changing from the cpap to the bipap made Rick strong enough to resume many activities, since it gave him
recuperative sleep again. However he skips breaths (up to 10) when he is halfway asleep. We are not sure he has the right machine. I hoped he'd have one with an alarm, or one that forces a breath if he doesn't initiate one.

The last checkup of the computer card reported that Rick and the bipap couldn't be working better together as a team.

We keep humidity going into the air with a cold air steam machine. That would likely help your soreness.... and he uses a nasal mask.. full over his nose. The other one he tried let air leak out the sides. Rick's P didn't advise using the humidity through the hose.

Bless you in every way. Hang in there! You're a tough person, and if anyone can straighten everyone out, it's you.

Are you doing work on your book yet?
 

nspoc

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Hi again, Beth -

We, too, use a pencil with eraser for the touch screen - even that does not allow Pat to turn the Dynavox on, she is too weak.

If you are not using the wheel chair then you need the other, rolling, mount - check out the Daessy website.

I am not knowledgable about your insurance situation, but Pat does not go to an MDA ALS clinic. She is registered with MDA (from her first clinic) and she still is eligible for their financial benefits. Medicare and secondary insurance paid for the Dynavox and one mount - we paid nothing at all.

Our rehab clinic set up the Dynavox, trained her (a little), set up the wheel chair mount (did it in our house!) and has provided us with info on ordering the internet WiFi connection, and all kinds of other enhancements. We would have never been able to do it on our own - and Pat is very tech-savvy.

I do not know if you are on Medicare - but we have had no trouble with approvals.

Also - I remembered the great rehab center in LA - it is Rancho Los Amigos. I realize it is heavy on spinal chord injuries, but they need the same technology that we do. I urge you to see if they can be more helpful with your technology needs.

We also have found out that the Rehab Institute was a lot more helpful with our at-home vent needs than our ALS clinic was. Even though it is a world-class medical center - we call it the "House of Death" because they are terrible about people choosing to vent.

Also - remember that huge Medical Centers are very competitive among and between departments - they are not known for coordination of services, and believe me - UCLA is the epitome of that rule! Check with a social worker at ALSA (ALSA actually started out in your area - Orange County, I believe). They might be better able to help you with coordination of services better than the tunnel vision medical centers.

Also - one more word about MDA. It seems to be in a state of collapse here in Chicago - at least in regard to ALS. The University of Chicago (first ALS center in the world) is no longer affiliated with them, and neither is Northwetern University Medical Center - a HUGE ALS clinic.

I am glad you got your machine working - but I am sure you could benefit from more help - I hope you can find it.

Beth
 

1Adam12

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ca
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Media dme is a scary thing. I have a $30k wheelchair that is 7 years old that i'll only used 5% of the features - but i believed them ( I am considering a Dynavox but now i'm scared!

i buy all my dme myself online now [bipap accessory / manual wheelchair etc]
 

BethU

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Hi, 1Adam12 ... the Dynavox certainly has all the bells and whistles anybody could want. Mine was paid for by MDA and my insurance/Medicare, and they will only pay for one per lifetime, so I got the top of the line. This is convertible to "eye-gaze" technology should I need that.

Right now, the best thing about this for me is that I can answer the phone, make calls, etc. with the DynaVox. This will make a big difference in my life. BUT ... if it's going to go kaput without warning and require rebooting when an emergency is happening, that's no good. I'm discussing getting a new replacement unit from them ... we'll see what happens.

It's a shock when you think you're functioning pretty well, and find out you can't even push an on/off button !
 

John1

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battery

Beth,

Next time your Dynavox blows up, you don't have to wait 3 days for the battery to die to power down. Have someone unplug the battery. It's simple.
 

BethU

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Great idea, John. Thanks! (Never thought of that.) :)
 
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