MODIFICATIONS THAT HAVE MADE LIFE EASIER

With bulbar onset ALS my mom's symptoms have progressed faster than many ALS patients. One weekend she's up and about and the next we're dealing with accidents and difficulty getting out of bed and off the toilet seat. That is the reality of ALS. It is an ugly disease.

We are constantly adapting to new changes. Here are some fairly affordable adjustments that we made to make life easier:

Indoor Walker: We got this way before my mom needed it. In fact, she refused to use it at first. One thing I've learned from all of this is she is a stubborn lady! This was covered by insurance and my mom uses it all the time. One time she didn't use it and we found her lying on the floor in the kitchen when we got home.. That was traumatic enough for all of us. Now she uses it every day.

We also got a little basket that attached to it so she can carrying a few things around like a glass of water or extra tissues. 

Raised toilet seat: The higher the seat, the better. This applies to seats in general if your PALS is experiencing weakness in their legs. The elevation gives a bit of momentum to help my mom stand up. Also the added handles on each side help a lot too. 

Depends: So I'm not sure how well these will work yet as my mom hasn't had another accident since she's started wearing them. She had 3 three before we lost our shit and decided we MUST do something. Luckily with more frequent visits to the bathroom, she hasn't had another accident yet. A little tip someone gave my on the ALS forum is to wear two depends at once - cut a small hole in the first one so the moisture can pass through to the second. 

This week we are looking into hospital beds, hospices and in-home caregivers. Stayed tuned for more to come.