one up/one down

[brooksea]

So I get the phone call about the flavor strips and think OMG, somebody actually gives a $#!%! I've done something that may help pALS themselves while they are still alive! And it's FREE! What more could one ask? Of course I realize it's just a marketing experiment, but hey, they actually CALLED me. Me- the cALS, the wife of someone with ALS. And they aren't even in the healthcare business, although that's what they are looking into. A simple phone call made me so happy! Hell, I would have taken an email from them and been elated! And they did in fact email me too!

So the next phone call I get pisses me off so bad, I have to tell my son to leave the room and just let me stew in my anger! The tech guy from ALSA that was helping us with obtaining a speech device tells me it's a no go on the one he chose. WTF!?!?!?!?! and WTH? The little ol Speech Pathologist told us at the eval to take these 2 devices home and "play" with them and decide which one he wanted. Then she would send the order for the device to the doc for approval and so on. She gave me her email address and phone number and told me the best way to get in touch was email. Fine. I emailed her on husband's decision. That was over a week ago. Did I get an email back from her? Yeah right! You guessed it - NOOOOOO! So I'm wondering if I will hear from her and made a note on my to do list this morning to try and call her. What kind of "professional" is this idiot? You can't even acknowledge you got the email? So, anyway - ALSA guy calls because apparently she must be afraid to call me...you know, the cALS, the partner of the patient - uh - caregiver! She calls someone totally unrelated to us! "But, why?" you ask. She has told him (ALSA guy) that she must re-evaluate him using the device he has chosen, as she actually has to see him use it or legally she could lose her license. Yet at the original eval we were told nothing of the sort and all could be ordered with a simple email message! This lady obviously knows nothing about what she is doing. I am so pissed at Emory right now I could spit nails. First the PEG fiasco and now the SLP referral crap! :evil:

SO- the ALSA guy is trying to see if she will accept a Web cam eval, as opposed to us having to drive all the way back down there! I'm not holding my breath!:evil::evil::evil:

Anybody using Emory, beware! If you need a speech device or a PEG right now, be afraid...be very afraid!

Oh - this also brings up insurance issues if you are on Medicare! Will a re-eval be approved? I know this because the ALSA guy brought it up. After he gets this device, IF he does, I'm going to make this lady cry. I swear I am! She has no clue whatsoever in her little young life what a pALS goes thru. She will pay, oh, how she will pay...

 

[pepsiman]

Boy oh boy does this bring back bad memories! I'll just say this, push, then push harder or the next thing you know three months will have gone by and nothing will have been done. Why must we work so hard to get these people to help us? I thought that was what they were there for. You would think the device salesmen would step up and take some of the effort out of obtaining the device. It means after all that they make another sale. And you would think they've been through it often enough that they know all the pitfalls that can delay the delivery.
Dick

 

[Twinsmom]

You Go CJ! Your husband needs a warrior and he's lucky he's got you!

Don't give up! The SLP is a flake! A bit of good news... since she didn't actually evaluate him on the device, it SHOULD be covered by medicare

Prayers for strength and tenacity!

 

[brooksea]

I've already sent a very lengthy email to the head nurse at the Emory clinic. Usually I try to remain calm, but his is bullsh!#! This chick has no business evaluating pALS! I get the feeling she is used to children, not actual people that care to carry on a conversation! She actually asked the guy from ALSA why my husband couldn't use a certain program that you just clicked the pictures! LOL Yeah, that would work! Especially for someone that has run their mouth since they were born and absolutely cannot shut up! Yeah! Toilet...click Drink...click Sex...click (oh- they wouldn't have that picture would they?) DUH!

 

[BarryG]

How i wish that there were a Sex button! Not that it would do any good of course, "What's that Barry? Sorry I can't hear you, you'll have to turn up the volume!"

The one thing that really gets me going is when people talk to me like I am either deaf or stupid. I still remember going for a swallowing study and the technician talked to me like I was five, she pissed me off so much and all I could do was give her a withering look. Some day maybe I will want to use a "Press the button for a drink" type of communication device and I already have several machines that have programs with icon based functionality but I like your husband I want to talk not just ask for things.

I wish I could send you my SLP, I have two and they are both very experienced and very helpful. Yours sounds like she doesn't take her job very seriously and she needs a tune up.

 

[tdamess]

good going on the tast strips . ... tell the lady to come to your house it is so much easier for her to come there and videotape than for you and hubby to go there

 

[tdamess]

p.s.
if they get enough request for them do you think this is what they are looking for to start a company that will sell them ?

 

[pepsiman]

You know, Barry I spent quite a bit of time learning to program the Dynavox for Liz. Never really thought of a Sex button (not sure why the button part never occurred to me....). I bet I could add one in about 10 minutes, maybe even with a few subtle "I love you" statements and a little Barry White in the background.

Dick

 

[hopeful warrior]

Dick, my hubby is scheduled to receive his Dynovox in a week or two. When he calls inquiring about the Barry White "love button" please tell him he's got the wrong number!

CJ~ I am so happy about the taste strips! That is wonderful news. I hope you're proud of yourself, that's a real accomplishment.

 

[DgtofTNfan]

CJ – I am a medical social worker by profession and coordinating resources, etc is what I do. The one thing that I have regrets about is the communication device. My city is a health care city and I work for a rehab hospital. None of our SLPs had experience with AAC/SGDs and would freely tell you so.

We had 2 choices. The ALS Clinic SLP and a local SLP that worked for a small non-profit company. The ALS clinic is in another city about an hour away and the visits were very hard on Dad. The ALS SLP recommended the local gal and so did the brand new director of our new Assistive Technology department where I work. I call the local SLP and she is very knowledgeable, had a family member with ALS and agrees to see Dad at HOME. Wow, I am impressed. The day before the visit, she calls and leaves a message that we need to reschedule. It took me 2 months to get her to return any of my calls. Two MONTHS! completely unprofessional and unacceptable but since she was Dad’s easiest bet, I have to hold my tongue. Finally get it scheduled, ordered, etc. It arrived on Dad’s porch 2 days before he died while he was in the hospital. I am still a bit miffed about it and professionally share my experience which could cost her referrals.

The good news is our hospital hired a new SLP for our Assistive Technology department that has a experience with AAC evals. She is frequently working with ALS patients and she is starting to see VA patients as well. I really like her and wished she would have started about 6 months sooner!

Anyway, the process used by our SLP for the SGD approval is lengthy. The eval is in 2 parts. The first visit lasts 2 hours and the second visit last an hour+ as there are a multitude of areas that need to be documented to justify the SGD, software and accessories. She usually schedules up to 6 follow up visits for training and usage as well as modifications that may need to be made depending on how the individual does with the device. Here is info from the ASHA website for SLP guidance/documentation requirements… SLP Checklist for Medicare SGD Documentation

I am sorry that you and your hubby have also hooked up with an SLP that has not managed your hubby’s needs or your expectations well. I will tell you that having gone through this with my Dad, I have a WHOLE new perspective as to what families go through and the problems with our health care system.

Kudos to all the pALS and cALS who are persistent like you. A wife of one our outpatients gave me this magnet…



Still have it on my desk.
Dana

 

[irismarie]

I LOVE your anger on behalf of your husand. YOU TELL THEM§! Everything is so wrong that we have to spend so much time and energy and stress just trying to things sorted. Nobody LISTENS from my family outwards..............

Well done about the taste strips. I got no reply (there's a surprise) from the French company

About the sex button - nah, better not say it.

 

[mytwoboys]

I feel for you CJ. Like Dick mentioned - bad memories here too. Our speech-chicky (as I call her) is some young 25 year old thing that thinks everyone's life is all happy happy and it's no big deal to get someone who is completely incapacitated back in for a re-eval. Our original device choice turned out not to be covered by our insurance so we had to start all over with one that was (Dynavox). She refused to sign anything w/o seeing him (struggle to) use the machine. It was practically identical to the one we looked at first. She said she would be committing fraud if she signed off on it. She turned her problem into mine IMHO.

I remember sitting there smiling at her during the nearly two hour fiasco. Little does she know that in my mind - I was beating her with a stick. That's why I was smiling. It's the little things sometime.

The entire mess took from July until the end of October.

 

[tdamess]

lol mytwoboys , i would of not kept it in my mind

 

[Phil M]

I haven't had a bit of trouble with Emory. Sorry to hear!

 

[brooksea]

Phil, It's not the Emory ALS Clinic staff...just the people they refer us to! Even they (Emory) have their doubts, as was expressed at our last clinic visit. I didn't bring it up, the doc did (re: PEG).

Dana, thanks for the link! I will take a look.

Edit: OK - I read that and printed it out. I still do not understand the SLP's stance of having my husband come back in to show he can use this. He's not an idiot and has no cognitive problems, but maybe she didn't take proper notes. She was very flustered, it seemed.He demonstrated he could use all the other devices with no problem, he just prefers this one.