Strike that last sentence – they are already offering trials to ALS centers.  I just reread Ann’s message from last Thursday.   

 

 

Alisa and Ann,

 

Here’s the latest from NC…

 

Last week, Ambient sent Margretta and one of her colleagues down to spend a day with the patient I mentioned.  I drove up to meet them but didn’t get there until they were 2 hours into the trial.  I tried the system myself.  With a little guidance, I was able to activate it (by swallowing) but our patient’s accuracy was very inconsistent.  His caregivers felt that this was due to fatigue but I have concerns about sensor placement (next to trach) and resulting “noise” as well as possible FTLD. 

 

We tried to come up with a semi-formal protocol so they can better track his accuracy but I’m concerned that he may never achieve 80% or more –Ambient’s goal.   They are extending his loan as his caregivers have agreed to practice on a daily basis and provide them/me with feedback.  If his accuracy improves significantly, our center may consider purchasing the system. 

 

It’s a difficult situation – like Ann said – caught between a rock & a hard place.  I would be thrilled if it works for this guy but even if it has potential, I’m afraid the window of opportunity may have already passed.  At this point, I’m not sure that it has any more potential than the Impulse switch.  However, I’d love for them to prove me wrong (clinical trial?!). 

 

Like everyone else, I’ve been fielding phone calls/emails left and right as PALS and their families hear about this.   Even after seeing and trying the system, I am still not 100% clear as to how it works and who would be the best candidates.  I’m overwhelmed and concerned about patients/families getting their hopes up only to be let down again.  I’ve talked to Maria about getting some proper hands-on training so I can better answer all the questions bouncing around.  Perhaps they would consider extending the trial/loaner program to ALS evaluation centers?

 

Amy

 

 

 

Alisa,

 

You have all the questions I have for the manufacturer. I am very concerned about the scanning goals, switch activation, and use with those who are dependent on a vent.  What I can’t figure out is what switch activation frequency should the user be able to reach for communication of stored messages in order to determine he/she is a candidate?  If memory serves a previous e-mail from Amy Wright indicated there was a user who purchased one and the goal this individual was working towards was consistent yes/no.   Based on the information shared in this e-mail, it didn’t seem as if this individual would have an ideal candidate. 

 

It seems like a good idea to research this area however to put a product on the market without any supporting clinical documentation is terrible!! What is even more sad is to think of the families with ALS reading the MDA magazine and thinking this offers hope for their loved one once eye gaze is no longer an option.      

 

Unfortunately, I can see someone in the two states (MN and ND) our program serves, purchasing it then asking for assistance using it.    I can’t help but feel as a clinician that I am caught between a rock and a hard place.  I would prefer to test the product to offer feedback.  I know that we will not be purchasing this item however the knowledge I can learn to share with others could be helpful.

 

I would hope Medicare would use the “eagle eye” to thoroughly investigate the research completed is missing key information. 

 

I recently requested a trial of the product.  The representative actually apologized about the product’s misleading advertisement and explained the system in detail to me.  She emphasized this product “does not read your mind” nor does it “make you speak”.   Apparently there have been several calls asking these questions….  HMMM..

 

It is intended for individuals who are “Locked-In”.  The users provide their Credit Card number up front.  Following the 2 week trial of the product, users offer feedback to the manufacturer if not going forward with the purchase or the system is purchased using the credit card number provided.

 

The system includes a sensor (otherwise known as a switch) attached to a “highly shielded cable”, software, and a notebook PC.  The “Highly Shielded Sensor” was emphasized as being so sensitive that is may pick up electrical noise necessitating the “shielding”.   It is a Beta System therefore not Medicare approved.  I was told if our facility tries it for 2 weeks, we can purchase the product for $500.00 as opposed to the listed price of $5,000.   We would need to sign a Beta Contract with the expectation to offer feedback.  Free software updates as released.   

 

There are 2 levels to the system:

 

1) First phase, the individual using the system is attempting to select scanned programmed phrases highlighted one at a time (I wasn’t able to tell if this was linear scanning or row/column.  Based on the description it sounded like Linear scanning—ouch!).

2) The next phase the individual learns is how to spell out words and phrases.  It sounded like one page was a split keyboard with the alphabet linked to several pages and if I understood the description correctly, each page included a set of commands (clear, backspace, speak all). 

 

In order for the client to activate the switch, the client must essentially try to speak.  In theory, the individual thinks about speaking sending the signal to the nerve that activates the MUAP.  Again, this is the information I received from someone in sales. 

 

I have so many questions about how this system operates and would prefer to be able to answer questions individuals are asking now so I requested the trial.

 

 

Ann Hoffmann| ALS Associatin MN Chapter, Coordinator for the Hrbek-Sing Communication and Assistive Device Program | PH: 763-520-0445 | 

Fax:  763-520-0355|Courage Center | 3915 Golden Valley Road | MPLS, Minnesota 55422
xxxxxx@xxxxxxxxxxxxxxxxx  | CourageCenter.org
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From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Hill, Katharine J
Sent: Wednesday, April 08, 2009 11:38 AM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: RE: [Assistive Technology] audeo alert

 

I was able to see this demonstrated about a year ago.  I’m very concerned that people will get the wrong impression from the marketing material and promotional literature in terms of what really happens.  When I saw it, the system could not “pick up” any word that the person “thinks,” only words that had been preselected or stored for recognition.   When I spoke with the developers I got the impression that they had little background experience regarding AAC, high frequency vocabulary and what that means in terms of generating utterances.   I’m sure more has been learned.   However, a lot of good intentions.   Still I’d like to see the clinical trial data in terms of measures that demonstrate interactive communication, e.g. MLU, % core vocabulary, rate, accuracy, etc.

 

Katya

 

Katya Hill, PhD, CCC-SLP

Associate Professor

Communication Science and Disorders

6017 Forbes Tower

University of Pittsburgh

Pittsburgh, PA 15260

T: 412-383-6659

F: 412-383-6555

E: xxxxxx@xxxxxxxx

 

Confidential University of Pittsburgh information. Any unauthorized or improper disclosure, copying, distribution, or use of the contents of this e-mail or attached documents is prohibited. The information contained in this e-mail message is intended only for the personal and confidential use of the recipient(s) named above. If you have received this communication in error, please notify the sender immediately by e-mail and delete the original message.

 

 

From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Wright, Amy
Sent: Wednesday, April 08, 2009 12:12 PM
To: 'xxxxxx@xxxxxxxxxxxxxxxxxxxx'
Subject: RE: [Assistive Technology] audeo alert

 

You’re right – it’s a switch access method at this point.  They are hoping that the sensors will eventually be able to consistently differentiate signal length or intensity in order to identify and “speak” selected words.  That’s where the “converts signals to speech” part comes in. 

 

Amy Wright

Speech-Language Pathologist

Carolinas Neuromuscular/ALS-MDA Center

(704) 355-0867

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From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Alisa Brownlee
Sent: Wednesday, April 08, 2009 12:06 PM
To: xxxxxx@xxxxxxxxxxxxxxxxxxxx
Subject: RE: [Assistive Technology] audeo alert

 

It still sounds like a switch access method.  This is not what the article in the magazine described.  Or am I reading wrong?

alisa

"Wright, Amy" <xxxxxx@xxxxxxxxxxxxxxxxxxxxxxx> wrote:

I have a little info to share with regard to Audeo Beta testing.  I had hoped to wait until I could actually get my hands on the system but in the meantime, here’s what I know…

 

The caregiver of one of our nearly locked-in ALS patients recently contacted me about the system then set up a trial with Ambient.  As they live about 3 hours from our center, my involvement thus far has been only via email and phone.  Last week I listened in on a trial facilitated by their home health PT and Kimberly Beals.  From what they are saying, as long as the user has some “intent to speak”, the sensors (which are supposedly far more sensitive than the Impulse sensors) can pick up motor unit action potential (MUAP) in the laryngeal area.  It is still very difficult for me to grasp but the patient who has the unit has apparently had some success.  On command, he tries to talk or thinks about trying to talk and the sensors are able to detect enough MUAP to reach a threshold set within the software and interface with a PC to select a word, phrase or letter.  At this point they’re only working on consistent yes/no selection but the PT thinks it has a lot of potential for this patient and others.  If the trial continues to go well, I hope to see it live in the near future. 

 

Time will tell…

 

Amy Wright

Speech-Language Pathologist

Carolinas Neuromuscular/ALS-MDA Center

(704) 355-0867

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From: xxxxxx@xxxxxxxxxxxxxxxxxxxx [mailto:xxxxxx@xxxxxxxxxxxxxxxxxxxx] On Behalf Of Alisa Brownlee
Sent: Wednesday, April 08, 2009 11:46 AM
To: AT National Listserv
Subject: [Assistive Technology] audeo alert

 

Alert for those subscribing to this listerv, my phone is already starting to ring about this article that appeared in the MDA magazine this week.

 

Speech Device Available for Free Trial
It reads muscle impulses to produce speech

by Alyssa Quintero

After rigorous testing and feedback from people with ALS, the Ambient Corp. has released the beta version of its Audeo speech system (pictured), which reads brain signals sent to the vocal cords and uses them to help produce speech.

Designed for people with ALS, the Audeo Beta Package (www.theaudeo.com) relays electrical impulses from the brain to a small laptop that converts the signals to speech. The system doesn’t read minds or give voice to random thoughts, but picks up muscle impulses created by conscious efforts to speak. (“Beta” refers to the fact that the product is still in development.)

Potential buyers must submit an application before a device can be shipped. Then, users can test it for two weeks before purchasing or returning it (no rental fee or deposit is required). Even if people return the device, Ambient relies on their feedback to improve the Audeo system and software.

The Audeo package ($5,000) includes the sensor and neckband, portable laptop with preloaded software and video tutorial. Users receive free hardware and software upgrades as they become available.

“It’s the most natural way that you would talk to somebody,” says Kimberly Beals, communications director for the Ambient Corp., which is based in Urbana, Ill. “You’re using the same movements to talk that you did before ALS. You just have to figure out the best place for the sensor and how to get the best signal.”

To receive an in-depth Audeo guide and application, contact Beals at (217) 408-4085 or by e-mail at xxxxxx@xxxxxxxxxxxx.

 

 

Alisa Brownlee, ATP
Clinical Manager, Assistive Technology Services
ALS (Lou Gehrig's Disease) Association, Greater Philadelphia Chapter

 

Assistive Technology Consultant, ALS Association, National Office

Direct Phone Number: 215-631-1877

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This electronic message may contain information that is confidential and/or legally privileged. It is intended only for the use of the individual(s) and entity named as recipients in the message. If you are not an intended recipient of this message, please notify the sender immediately and delete the material from any computer. Do not deliver, distribute or copy this message, and do not disclose its contents or take any action in reliance on the information it contains. Thank you.

 

Alisa Brownlee, ATP
Clinical Manager, Assistive Technology Services
ALS (Lou Gehrig's Disease) Association, Greater Philadelphia Chapter

 

Assistive Technology Consultant, ALS Association, National Office

Direct Phone Number: 215-631-1877

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