myamylostory

Good Days and Bad Days

United States

Good Days and Bad Days

My husband had been on blood thinners due to pulmonary embolism.
His first brain bleed in June 2019 – they took him off the blood thinners and all seemed fine. He did start having more difficulty with thinking process but he’s 11 years older than me so I just wrote it off as age. In Oct 2020 he had another pulmonary embolism so went back on blood thinners- he then had a 2nd brain bleed this past March 15, 2021..he finally let them do MRI and found amyloid deposits in the brain. Now I wonder how long the deposits have been forming. He has spells where he’s having like a mini stroke- he can’t talk and then when he’s able its slurred. This lasts for up to 20 minutes. He gets confused very easily and his memory has worsened. Sometimes can’t figure out which way his clothes go on or how to work the TV remote.
All the neurologist can tell me is he may have those “spells” as I call them, and as long as they don’t stay more than 30 minutes we are fine. He did put him on an anti seizure medication and had DMV take his driver’s license.
It’s been 3 months since DX of CAA and we still don’t really know what we’re dealing with. Some days are really good for him and others it takes 30 minutes to put on a shirt. Its very frustrating and frightening. I have no idea how long my husband will be with me before this disease takes him away, either mentally or physically. We just keeping working through it day by day- hoping for the best and being grateful for everything at the end of each day.

Good Days and Bad Days – Janice – United States