Good morning.
My husband is 80. But a very active 80 until stricken with this. He flew his private plane about 3X per week, practiced formation flying, and flew on cross country trips.
He cleared brush, and worked on his antique jeep. Within 4-5 weeks he was unable to make a sandwich or do other simple tasks. He also was almost non-ambulatory by the time he was hospitalized. However, after 5 days of IV steroids, he was able to walk pretty well, and it was determined that he didn’t need rehab. I’m puzzled as to why they didn’t give him a steroid taper after that. The only answer I can get is that they don’t want to treat him with steroids when they don’t have a definitive diagnosis. They think it’s AE or possibly Lymphoma.
He’s just started outpatient PT, and he’s tolerating it well, but too soon to tell how much it will help. Did your husband experience confusion and memory loss? Mine was better immediately after hospitalization, but now memory and spatial deficits are re-emerging.
It’s so frustrating to know that steroid therapy will help him, but both the oncologist and neurologist don’t want to prescribe them.
It’s very fortunate they were able to identify the GFAP antibody with your husband. It’s so rare. I’m glad they were able prescribe a treatment plan for him. I hope you continue to have more “ up” days than “down” days, and your husband continues to improve. Thanks for the encouragement.