I just wanted to introduce myself, I'm Donna. My sister is married to a man who was diagnosed with AS one year into their marriage about 9 years ago. They have a four year old daughter, and were doing well for a long time.
The reason I'm here is because his disease is now progressing rapidly and is refractory to treatment. After a long period of denial, then grieving, and now planning, they are preparing to move into my home, probably permanently. Since they will now be a big part of my daily life, I thought this would be a good place to learn and problem-solve so that I can be a good support for them, not to mention it'll be a big change for me too and I'll need a place to unload, lol. But luckily I love my BIL and of course my sister, and with the way the space here has been divided, I'm actually looking forward to living as one big family.
Right now they're still trying to sell their home and the past year has been horrible for all of us, but especially them. I have to wonder if the immense financial pressure they've been under has sped up his disease process. I've reconstructed my house to accomodate all of them and to offer them a comfortable healing environment.
The only other thing I wanted to mention is that his dad also has AS, but a milder form of it. His spine is fused also, but he's in his 70's and still functional. My BIL is almost bone on bone his entire right side, and he's permanently hunched forward, and always in pain with some relief with courses of Prednisone. He's a great dad to their four year old, and I really want to do whatever I can to maintain that relationship.
If anyone can identify with all of this, would love to also hear about your experiences with loved ones.