- Dec 9, 2015
My husband was diagnosed with bulbar onset ALS in August (so we've lived with it for 5 months or so now) and his symptoms have progressed. But what has surprised me the most--and has been the most difficult thing to come to terms with or manage--has been the change in how he processes information. It has hit home in a big way recently. Our vacation was plagued with the usual physical issues of ALS, but my husband seemed unable to think through things clearly in the new setting. For example, to turn on washing machine in the house we stayed at, he had to flip the circuit breaker and then flip the levers to turn the water on. There was even a picture of what to do. He had no idea how to do it. The one subway transfer we had was incomprehensible to him. He couldn't follow the blazes on the trail. He couldn't follow the recipe (that only had three steps). When we got home, he couldn't explain why he thought that we should turn the furnace temperature down to warm up the house. No one would notice these things, I think, mainly because his conversation is limited to football or what his kids are doing when he's around others. And then, because speaking is difficult and he's difficult to understand, I think most people think he's just keeping things simple. He was an accountant! This kind of stuff is not like him at all! He's also refusing to make plans for when he loses speech or for when the disease progresses in other ways. "Refuses" might be too strong a word--he just doesn't do it. And I'm scared because he might make financial decisions that will seriously impact those of us left behind. Is this typical of FTD? How can I broach this with him without him or his parents or others getting angry?