Glasses and respiratory assistive devices

My wife has ALS and uses an eye gaze device to communicate.

She has declined enough that her doctors are urging her to see a pulmanologist for relief of breathing distress.

She has made it known in her advanced directive that she would like to use a form of non invasive breathing assistance to help extend her life.

However, she needs eyeglasses to be able to use the Tobii Dynavox eyegaze communicator.

I'm reaching out to anyone I can for information on what types of assistive devices work best with glasses as she does still need to communicate too.

She is a nose breather

There are masks that do not fit on the bridge of the nose. Not sure if she must have a full face mask or not. That would determine her options. With my son's ALS while using an ASV machine he was able to use a nasal pillows mask, but I understand not everyone can. If you let us know that you'll likely get some targeted recommendations.

Nasal mask at night, and if needed to relieve symptoms, she can use mouthpiece ventilation (MPV) during the day if she ends up getting a ventilator. MPV has the advantage of the user being able to take a breath on demand (so you don't have a mask on your face, and you can just take an assisted breath whenever you feel like it) and also it requires essentially zero effort to trigger an inhalation. As long as she can protect her airway she can use non-invasive ventilation.

I knew someone with ALS. One time while visiting, she had on an Amara View mask and her glasses, while sitting at the kitchen table, during the day. At the time I was using Amara View ("Hey, I have the same mask!)

I also wear glasses. The Amara View fits over the mouth and under the nostrils, doesn't go on top of the nose. There is a strap (headgear) but it doesn't interfere with glasses.

If she's able to use a nasal mask, maybe a nasal pillows mask would work as well. Nothing on the bridge of the nose.

baycitysparky wrote: ↑

Wed Feb 12, 2020 5:29 pm

I'm reaching out to anyone I can for information on what types of assistive devices work best with glasses as she does still need to communicate too.

A bilevel CPAP seems to be the best treatment for ALS patients ( https://alsnewstoday.com/2018/08/07/opt ... -survival/ ).

Although the doctor should be able to recommend an appropriate machine, I recommend this one - https://www.cpap.com/productpage/resmed ... el-machine.

Note that the machines will not interfere with eyeglasses nor the Tobii Dynavox eyegaze communicator. However, some masks will. The good news is that there are some excellent masks, both nasal and FFM, that do not interfere with the line of sight. (For over nine years, I've been using an FFM that doesn't interfere with my line of sight.)

After you see the pulmonologist, let us know which machine and mask he prescribes. We can help you with verifying a good choice.

BTW, in the article linked above, the author states, "... through a mask that is placed over the mouth." This would indicate that a Full Face Mask is needed. However, I wonder if the author mispoke? If the patient can keep the mouth closed while using a bilevel CPAP, a nasal mask might work. Nasal masks have a smaller footprint than full face masks and are thus preferred by some users.

Keep asking us questions.