Wow, what an experience! I went to my husband's nursing home yesterday to a zoom meeting with all the professionals involved in his care. As his condition is relatively rare, there was a lot to go through plus he'd not long been out of hospital with a chest infection. He's been getting a lot of really bad pain (is there a good one?) in his legs during the afternoon as he can't stand upright without a hoist so his meds for that and other things were discussed and sorted. I brought up the subject of research as it would be great if he were on some kind of register so his records can be examined and evaluated and that's being sorted out too. I'm just so heartened by the wonderful care he's receiving day to day. They are worth their weight in gold!
