* people with ALS
I don’t intend for this list to be comprehensive. Some tips are more relevant for people at the beginning of their experience with ALS; others may be relevant to folks at any stage. I will update the list as things occur to me.
- Get the best neurologist you can find. Ideally it will be someone with an interdisciplinary clinic so that you can see multiple specialists on the same day, and they will work together to coordinate your care.
- It’s never too early – or too late – to get a bidet seat. It will allow you to keep your independence longer while toileting. Even if you lose hand function, it will allow you to feel clean before someone else dries you. (Some seats have dryers, but don’t count on them doing the job.) Another big benefit is that the posterior setting (vortex on my BioBidet) can relieve constipation.
- Read The Butcher’s Daughter: The Story of an Army Nurse with ALS, by Sandra Lesher Stuban. I found Stuban’s story helpful, because she provides a perspective of dealing with ALS as a woman and, especially, as a mother.
- Let people help. It makes them feel good. I have trouble asking for help directly, so I send announcements via my lotsahelpinghands.com website. My friends register with the site, and when I need something, like a trip to the grocery store, I send word to everyone. Whoever can do it signs up on the calendar, and I don’t feel like I have put anyone on the spot.
