by One of the most disruptive issues to our daily routine became bathroom trips. The more strength I lost, the more disruptive it was. When I was still using a walker it was very little problem. My wife and I would use family bathrooms when out and about. Once I was in the power chair, complexity was added. Early on I was able to lift myself, with the help of my wife Julie, from the chair to the toilet. Once I lost that strength then a gait belt had to be used. Julie is unable to lift me so my brother Mark helps with that.
Imagine the limitations once a gait belt is needed. The first task is to work out how to make urinating easier. We started using urinals or plastic container which still requires help. What is called a condom Catheter was the next option. Slips on, has a hose attached to a bag and allows for mobility. There is an option for an overnight bag or a bag that straps to leg for outings.
Toileting when out and about is a challenge if there is no family bathroom so preparation is in order. You can get on a schedule for bowel movements or wear something like Depends. Whatever the case, mobility is possible. Also, get an electric bidet, it is a great gift for your caregivers.
I hope to inform folks on my experience as one who has ALS but also offer hope to those have the disease. Your life is not over but a good support system is needed, like family and the Veterans Administration for me but also MDA and organizations like Team Gleason. Please contact me at joelanham53@gmail.com if you have questions.