((Nikki))

I am very familiar with the destructive nature of amyloid - the protein that has infiltrated your husband's brain. My particular type of amyloidosis is effected by the same type of amyloid protein, and also has some brain involvement. I sometimes forget how to pick up a spoon or open a door. I almost called 911 when my TV cable went out one day - couldn't remember what buttons to push on my telephone to get the TV back on.

I understand why you don't want to seek any further testing. I did the same thing with my docs because it was exhausting and depressing to only measure increasing negativity without any real hope for improvement. I made a deal with them. I'll call them if I need them, and they will try to help me if they can. I only visit my eye doc when I'm well enough to go through the torture of his eye exams. It gives him a thrill to provide his colleagues, residents and medical students with a glimpse into outer space. He says my corneas look like the surface of the moon, but one of his colleagues says they are "beauuuuuuuuuutiful." It's a thrill for them, but last time we had to stop several times because it made me so sick.

I'm so sorry this monster is attacking your husband's brain. Cherish your "I love you's" and play them back in your head over and over again until the song is firmly stuck into your brain.

This monster may take your husband's brain, but it will NEVER take your husband's heart. It belongs to you and always will - even when your husband can't remember your name. When your heart cries for him, remember your song and sing it to yourself.