As one of my mom’s caregivers, I wanted to create a list of the ALS caregiving products, mobility aids, respiratory equipment, comfort items, and daily living tools that have genuinely helped her. These recommendations come from her physical therapis...
Sections
4
Eating & Drinking
Positioning Supports
Other Comforts
Organizations
Eating & Drinking
She never used the spoon but the fork was wonderful. We got the smaller size because her fingers are smaller.
Dining with Dignity Utensils for Adaptive Eating
These are helpful for scooping food up the sides, makes it easier to get onto a utensil.
Adaptive Spill-Proof Scoop Plates 3 Pack
This allows for completely hands free drinking. You just need a caregiver to help position the straw in front of the face.
Giraffe Bottle Tower Hands Free Drinking, Tritan
This mount lets you put the water bottle onto the wheelchair
Wheelchair Rail Mount Bottle Holder
The waterbottle will not stand on its own without this holder. We waited to buy this because it was expensive but I wish we just got it sooner. Note that it is quite heavy.
Desktop Bottle Holder
I would recommend getting more than one straw because they are hard to clean, especially if you use thickener.
Tower Replacement Tube/Valve
As mouth control decreases liquid can escape down the throat faster which makes aspiration more likely. Using a thickener helps reduce the risk of aspirating.
Thick-It Original Food & Beverage Thickener, Unflavored, ...
Positioning Supports
She uses these boot splints while she is sleeping at night to help fight against foot-drop
Boot Splint, Adult
She uses these thumb spica splints throughout the day which helps with wrist pain
FREETOO Thumb Brace for Arthritis Pain, Right Hand
These resting hand splints help prevent her fingers from curling and contracting. She wears them at night.
Fanwer Resting Hand Splint for Stroke Recovery (M Right)
Other Comforts
We apply this to any area that is sore, especially her neck, hands, elbows, thighs. It really helps a lot. Expensive but worth it.
Restore CBD Lotion
Organizations
They have sent us a lot of equipment for free and have social workers and are generally just a great resource.
Ccals
Find your local chapter, they will have a lending closet and can help you get stuff.
ALS United
They can help you learn about clinical trials for ALS
ALS Therapy Development Institute
We see a wonderful neurologist through synapticure and they have lots of other services too
