Recent content by PamC

Thank you Nikki for this reminder. I contacted the Brigance Brigade last year but with the pandemic they were not taking any donations. I can try again.

As described in previous posts, I am looking for someone who could use a rolling shower chair. This wonderful piece of equipment provides a relaxing, safe shower. A picture is included in the May 17, 2021 post. Please post any questions and I will do whatever I can to help someone receive it.

Rea, While these are undoubtedly worrisome times, please know the support and knowledge the forum provides saw us through challenging times. I am trying to find out how to private message you about the shower chair. Will contact you when I find out how. Just did not want to leave you wondering.

I believe we could drop the back and fit it in a SUV. It is light weight but a bit cumbersome. I do not know how to private message you. Can someone help?

Here is a photo of the chair. As you can see, it is made of PVC pipe and can be taken apart for easy transport.

Looking for a good home for this wonderful piece of equipment. The rolling shower chair was an absolute godsend for us. It is oversized and supports from head to toe. My husband loved his showers and when we could no longer safely transfer to a bath stool, this rolling chair was the perfect...

Hello, The Trilogy mask was a full face mask. The back up bipap accommodated a small, nose only "pillow" and did not cover my husband's mouth. This "mustache" pillow allowed him to easily use the Tobii eye gaze communication device with an unobstructed view. Please let me know if this is not...

Hello Jen, Reading your post reminds me of how our life depended on the Trilogy. If it is of some help, I recommend to keep calling the respiratory therapist to check the settings. My husband used two bipaps as he depended on them 24/7. We used a Respironics during the day with a small pillow...

BTW for me the pain went away after about a month. And with only one pillow it is 50/50 chance. Last night my head fell the other way!

I am latching on my wife's account. I had this problem of "my head falling off". It was solved with a small wedge pillow and a pillowcase. The pointed end of pillow is put in the back of the case and the tall part of pillow is a "wall" with the case having a 2' ~ 3' tail. My head is put on tail...

Jim, BTW - I have asked the ALS Forum folks how to contact you for a private discussion (get your email address). I like to spitball some ideas with you (not for the forum world).

About eye gaze and backrest. One bugaboo about eye gaze is when my "head falls off" to the left or right while sleeping, your eyes needs to stay level with tobii. I have a idea of a PVC double U- frame head holder to go over the chair backrest to support the sides and keep my head on straight.

There is a big focus on speech and voice control. Everything new with remote control is "voice command" (to point of frustration). The phase "people without a voice" has new meaning. When I was still verbal, I had a Tobii from my local ALS Association loan closet to get over the eye gaze...

Jim, Hello my name is Steve, latching on to my wife's account. You and I are about the same in ALS status but I am aged (65) a bit more like a gourmet cheese that I can't eat (peg feeding only) and I can talk but I'm the only who understands (AKA non-verbal)! I was a civil engineer in both...