we can certainly understand that. We do have an article on a variety of resources, just in case it may be of interest, I shared it here - https://spinalmuscularatrophy.net/resources-health. How are you doing this week? Wishing you well. -Jessica (Team Member)
Jennifer Greer Moderator & Contributor
If I could I would add a wheelchair accessible bathroom to my home designed specifically for my SMA needs, with a hoyer lift track etc. Unfortunately that is not a cheap task. It’s difficult to do any home repairs that make things accessible living on a fixed budget. Then the programs available like IO waiver are cumbersome and if you don’t have a great caseworker they can take forever to get anything done. Jennifer Moderator, SpinalMuscularAtrophy.net