Best tools for non-verbal ALS patient

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runnerlynch

New member
Joined
Dec 9, 2019
Messages
3
Reason
Loved one DX
Diagnosis
09/2019
Country
US
State
NY
City
Syracuse
My 76-year old Mom was diagnosed in September 2019 with ALS after 3 years, many neurologists, 2 different states and many different possible diseases before (stroke, Parkinsons, Lambert Eaton, Progressive supranuclear palsy, etc.). Moved Mom to nursing home near me in October and she has been holding her own. She has been gaining a little weight, eating well, drinking nectar liquids, walking with the aid of a walker and writing on a white board. She is non-verbal and that was the first outward sign of her disease. There were minor indications before that looking back but none as alarming as waking up one day pretty much unable to talk More recently she is having trouble writing words and expressing herself. I can see that she knows what she wants to write but cannot put it down. This has been very frustrating for her. Her close-up eyesight is also somewhat effected but I am not sure if it issues from the brain to the eyes or with the eyes themselves. Wondering if anyone has any tricks or tools that would help a non-verbal patient communicate with everyone around her. We are pretty much limited now to a thumbs up or thumbs down or nodding of the head when questions are posed to her. However, she cannot express how she is feeling but she certainly knows everything that is going on around her. Any suggestions would be welcome. Thanks, Lynn
 
I’m assuming that vascular disease (stroke) affecting the speech centers of her brain was ruled out as a cause of her expressive aphasia (nonverbal communication) and that she had an EMG consistent with ALS. The fact she wants to write but can’t put it down (assuming her hands work) sounds more stroke-like to me. Also waking up “one day unable to talk” is pretty acute — again, raises question of a stroke with expressive aphasia. Was she seen by a neuromuscular specialist?

Assuming she was, I would think an evaluation by a speech/ language pathologist would be your next step. If she is not a candidate for an eyegaze device, a message board might be useful where you point to letters, words, symbols, yes, no, etc.
 
There are free communication/word board apps for phones and tablets, for both iOS and Android. A paper one, that can be laminated, may be easier to read. I've attached one (you can find tons on line) as an example.

Welcome.

Best,
Laurie
 

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She has had MRI's of the brain showing all normal. Two neurologists and a neurosurgeon. Two speech pathologists who do not agree with th ALS diagnosis. The one believes it is the progressive supranuclear palsy. She hasn't progressed as I thought she would have if it were ALS. When I brought her to nursing home here was told she had ALS with months to live but that was more a mental breakdown from her receiving ALS diagnosis. She has rebounded back since then. She lost 100+ lbs. Unexplainably which started before aphasia. Slight issue with swallowing thin liquids but that hasn't progressed either. Thinking we will find yet another neurologist after the 1st of the year. I really want to help her communicate though.
 
There are free communication/word board apps for phones and tablets, for both iOS and Android. A paper one, that can be laminated, may be easier to read. I've attached one (you can find tons on line) as an example.

Welcome.

Best,
Laurie
Thank you! I will print out really large and try that She can't see a phone or tablet well.
 
Thank you for clarifying. I would definitely recommend she see a neurologist who specializes in neuromuscular diseases if she hasn’t already. Especially as there are differing opinions regarding whether or not she has ALS.
 
Vidatak Communication Board Clinical and product info can be viewed at vidatak dot com. The Vidatak EZ Board is an inexpensive way to help your organization meet National Patient Safety Goals. It's on sale now for $14.99 and I think it's about 11 x 17 and laminated.
 
Hopefully you can find a speech pathologist that will work with you. Regardless of the diagnosis and if they agree, the request is still the same.

I am currently using a Tobii 4c connected to my pc. This works really well for me. I also have a PRC device as a dedicated speech device. That also works pretty well for me. I am a technical person so I realize those may not work as well for others. I was able to borrow a laser pointer from my local ALS Association. LASER POINTERS - Low Tech Solutions

I have since made a lower profile pointer for a lot cheaper. One of my designs requires a hat to clip to and one is really small and clips to glasses. I am still verbal but I speak very slowly and it's not clear. The laser helps me point to what I need and saves me a ton of energy.

If you are a little bit handy I could describe how to make your own or I could easily send you one of the glasses lasers. Just drop me a PM.

I think that the laser with one of the communication boards would work really well.
 
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