Thursday, July 21, 2005

45 alzheimer's study & other news

Mayatime: 12.19.12.8.10 11 Oc 8 Xul (manifestation portal/burner)

Yesterday we went for the first of many visits to Yale for the new Alzhiemer's study. I managed to get permission to skip lunch and leave work an hour early to go with my parents. Just as I was leaving work I saw that my lunch bag had leaked watermelon juice everywhere and I had to pause to clean it up so fruit flies didn't come. I was just a block from my parents house when my cell phone rang. It was buried in my purse and I couldn't locate it easily, and I was on Route 5 which takes all one's concentration, so I just let it go to voice mail. When I dug it out it was my parents' number. I called, no answer. (this was maybe 30 seconds later) I pull onto my parents' street and they are DRIVING AWAY without me. It was 2:18 and my mom had said we'd leave at 2:30.
But as soon as I parked my car and got into theirs I found out why she was so flustered. She lost her job yesterday morning. Now she has no insurance to pay the $300+ a month for dad's medicine. This country SUCKS.
We ended up parking in the wrong spot in New Haven (I did not see another driveway, but they claim it was there) so we couldn't get the parking validated. Such a little thing, $6 for parking, but when you've just lost your job everything looks huge.
We were at the clinic office for 2 hours. They did a physical on my dad, had us in a conference room while they explained the study and had my parents sign lots of papers. I wanted (want) to be involved but I was totally superfluous. They only want ONE contact and it has to be the person who sees him the most--so that's my mom. I can go with them, but I can't offer my opinions. I'm pretty useless apparently.
The treatments are via injection (IV) and I think he gets one every 2-3 months, for 27 months (9 injections). The first two treatments are SIX HOURS long. One hour for the IV drip and 5 hours to see if he has an allergic reaction. The rest are only 2-3 hours long. He has to get lots of MRI's and cognitive tests (obviously).
It's double blind, and a 50% chance my dad will get the real medicine and not water. He doesn't have to go off his existing medicine. This is supposed to be a treatment that dissolves the amyloid plaque and might even stop it from being re-formed. Not sure if it's permanent, that's one of the things I forgot to ask.
The psychologist noticed his extreme language difficulty as he tried to tell one of his famous stories and it just fell flat. I told her how he's always been a story kind of guy, even when I was little he made shadow puppets (Jerry Giraffe) and told stories about them. She had him read out loud, and he'd get the words wrong, and sometimes he'd know it, and say the word two or three time and shake his head and say "that's not it, that's not right, I can't talk right anymore" and other times he wouldn't notice he said it wrong. He kept saying "place-boo" instead of "pla-cee-bo" (placebo), but he probably never heard or said that word before in his life.
They asked a lot of questions: did he ever do the laundry? Does he still do it? Does he wash the dishes? Are they clean? Does he know his way around the neighborhood? Can he still drive? Does he use the stove? Can he prepare food? They took my mom into another room and asked her a lot of questions without me. They took my dad away and asked him more questions (good luck with that!), and had him pee into the cup, and took blood.
I understand that it's all for benchmarking. The psychiatrist did listen to my opinions while I was there in the conference room but in all other things I was excluded.

2 comments:

Esther's Writing Works said...

Dear GEVERA

Thank you for this blog. I have been looking for you.

Esther

ng2000 said...

Another resource for you: http://www.ng2000.com/fw.php?tp=alzheimers