Some of the caregivers I am in touch with have been using nanny cams connected to their smart phones to remotely check on the pALS when they need to be away from the house.  Example, http://www.netgear.com/home/products/home-video-monitoring/#tab-advantages.  Would this be a possibility in your patient’s situation?  Is the husband free during his three hours away to check on her using remote technology?

Judie Benwick, MSH, MPH, CHES

Regional Care Manager – North Florida

The ALS Association Florida Chapter

So I suppose I should mention that when he leaves its early in the morning and she is still asleep. Apparently she sleeps until nearly noon which is partially why he feels comfortable leaving. He leaves from about 7-9:30 I believe. I am thinking something would have to be set up prior to him leaving in a position where she could begin using with no need for physical manipulation of devices.

I have been involved in situations where someone that comprised was left alone as well.  On separate occasions we set up an Ameriphone controlled by proximity switch, a twitch switch, and a sip and puff switch.   Ameriphones work with landlines and occasionally you do come across a patients without a land line, only a cell phone.  You can set up a Cobra Phone Lynx, which is a small device that allows you to use the Ameriphone with your cell phone and eliminates the need for a land line.  I’ve seen this set up for an ALS patient who was able to control it with a switch.

 

Best Regards,

 

 

Rachell Westby, M.C.D., CCC-SLP

Assistive Technology Specialist
The ALS Association – DC/MD/VA Chapter

2800 N. Parham Road, Suite 208
(804) 912-5758 | 1-866-348-3257  Ext. 103
Fax: (804) 912-5758
xxxxxx@ALSinfo.org
www.ALSinfo.org

 

We are grateful for the support we have received from the Ice Bucket Challenge. Learn about our mission priorities, which include funding global research, assisting families living with ALS through care programs, and advancing public policy efforts to empower those living with this disease.

 

 

From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Edward Hitchcock
Sent: Monday, October 06, 2014 5:21 PM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Access and Lifeline

 

Is her eyemax unlocked?  Can she use that with Skype to call his cell #?  She can probably use the ipad with skype as well...

 

A lifeline offers alternative switches to access call system; I do not have the info immediately handy but think it was just discussed in the last couple of weeks on this list...

 

Ed Hitchcock OT/L

Technology Center

Rehabilitation Institute of Chicago

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From: xxxxxx@alsa.simplelists.com [xxxxxx@alsa.simplelists.com] on behalf of Erin Singleton [xxxxxx@communitymedical.org]
Sent: Monday, October 06, 2014 4:12 PM
To: xxxxxx@alsa.simplelists.com
Subject: Access and Lifeline

Good afternoon,

 

I have two questions for ALS patient. This particular patient has DynaVox EyeMax eye gaze system (about 4 years old) and an iPad. She has very minimal, inconsistent hand movement. Currently her spouse leaves the house 3x/week for 3 hours at a time. The patient is left alone in bed. Currently they have a great monitor system for when he is home and on their property but she is left with no means to call him should she need him to come home earlier. My questions are these.

 

1.       What is the recommended life alert system (We are in Central California). I have recommended to patients spouse that they pursue something as patient needs a means to call for help in an emergency when she is home.

 

2.       What is suggestion for a system to make phone calls husband? We attempted to have her ipad set up to facetime him on his iphone but they have struggled to make that work since both systems are on the same number it does not allow her to face time his cell since #’s are the same. This is not a situation I run into regularly because its rare we have patients that are of her progression that are ever left alone (this is a separate concern we’re looking into assistance for).

 

Thank you in advance.

 

Erin Singleton M.A., CCC-SLP
Neuroscience Outpatient Rehabilitation Center
2335 East Kashian Lane, Suite 301
Fresno, California 93701
Office: (559) 459-6056
Fax: (559) 459-2957
Email: xxxxxx@communitymedical.org

 

 

 

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