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.

44 great news!

Unfortunately I can't find any articles online to link to in reference, but last week in the New Haven Register, there was an article on a new study being offered at Yale University on Alzheimer's. (This is apparently the same vaccine, but several years ago.) My mother wanted me to call and see if my dad would be a candidate, so I did. The first step was just to leave my name and number. A few days later someone called back and asked a lot of questions. Of course, not the questions I had prepared the answers to, like which medicines does he take and how much of each. No, how tall is my dad? Umm. How much does he weigh? Umm. (I guessed, and my mom said I was pretty close.) For how many years has he taken multi-vitamins? What brand? umm. Then she asked "What does he do?" I kind of laughed. "He's got Alzhiemer's. He's retired." "No, what did he used to do?" Oh, that's easy-sell cars. And so on. I asked if he seemed good for that study and she said no, but he'd probably be able to get into a different AD study at Yale.
Friday my mom had a 1/2 day at work because of the corporate picnic, which she didn't want to go to, so when we did our usual Friday afternoon lunch, I went to the house to pick her up and my dad came along. She said that Yale had just called and accepted my dad into the vaccine study!
I explained the concept of a placebo to her--that depending on how the study is set up, at least 1/2 of the people get a placebo, which is a fake pill (or, in this case, a fake injection). Then some people may get a lesser dose of the medicine, and others the full dose. The study is double-blind which means neither the doctors or the patients know who is getting what.
Her response was, "well, Daddy's young and in good health so they'll give him the real vaccine."
Double blind. No one knows.
"Oh, they know."
I can I argue with such complacency?
And she thinks this could be a complete cure. Not so.
This drug removes the plaque from the brain. (According to the CNN article I linked to above, it does NOT remove the tangles.) It does not regenerate dead/lost cells. I can see that it would halt the disease in its tracks depending on how it really works (the disease, not the drug). If the tangles and plaque CAUSE the disease, the injections will be a great help. If they are only SYMPTOMS, it might not help much at all. Lost memories could not be regained, but we could hope that new memories could be made to replace them and no other memories would be lost. So what if my dad forgot someone's name? If he's re-introduced to that person, he'll remember her now. Not sure what would happen with things like math ability--could math be retaught the way a child learns, or is the capacity for doing math just gone? I don't know a lot about how the brain works (although I know a hell of a lot more than a did just over a year ago.)
And yeah, the 1 year anniversary of my dad's diagnosis just passed. So I did 43 entries in a year, or an average of one every 8 days. Not bad.
One of the best things about this study, in my opinion, is that he doesn't have to stop taking his existing medicines. I worried that he would get into a study, have to discontinue the medicines that were clearly helping him and slowing down the disease, and he'd get the placebo and lose everything we'd worked to keep, and gain nothing.
The bad thing about this study is that the previous study was halted because the vaccine gave people encephalitis. WebMD says this about encepahalitis:
Encephalitis is an inflammation of the brain that is usually the result of a viral infection. When the brain becomes inflamed—swollen and irritated—normal blood flow to the brain is altered,leading to symptoms such as confusion, fever, and severe headache.
Great. Just what my dad needs. More confusion. Apparently encephaltitis can also lead to death. My mom skipped over that part of the article obviously. I'd think that if they are offering it again they've fixed that part. I hope.

43 father's day gift

I don't think I'll ever enjoy Father's Day again. It was the day after father's day last year, on the summer solstice, that my dad was formally diagnosed with Alzheimer's. So we've gone through a whole turn of the wheel almost, and it will never get any better. How's that for cheerful?
Well, my fish died last night, I can be sad can't I? Yeah, my betta. That means all my original fish are dead. I had the betta and the sucker fish. The sucker only lived a couple of days. I got 2 albino cory-fish, one of those died, and I got another albino cory and a green cory. I have the 3 cory-fish left.
So for Father's Day my dad wanted another dinner-and-a-movie night. We did that for my mom's birthday in April and he enjoyed it. So we went to the Pacific Buffet, where he ate not a single vegetable-just plates and plates of shrimp and clams and that damn stinky "red sauce" as he calls it (cocktail sauce). He insists on keeping a "scraps" plate which he will not allow the waitress to take, filled with putrid shells and shrimp peelings, and of course it was right in front of me. I have to assume his nose has stopped working because everything he enjoys eating is especially odorous--salmon, for instance, and clams over linguini. Or maybe it's just that he likes seafood, which I hate and detest and am completely repelled and disgusted by.
We went to see Mr & Mrs Smith, which was a fun movie. The plot got a little silly in spots, but it was entertaining, and Angelina Jolie and Brad Pitt have good chemistry together. (Not like the young couple in The Notebook, who had zero chemistry.) Ate lots of popcorn. It was pretty crowded for a Tuesday. (The theater has matinee pricing on Tuesday night, so that's when we usually go.)
When we got home, I fed the fish. The betta was hanging out in the front corner of the tank near the top so I gave him a betta pellet (he doesn't like--DIDN'T LIKE--betta food, he always ate the catfish food from the bottom) but he ignored it and went to eat on the bottom with the cory fish. This morning he was dead, all the color leached from him, his eyes staring. :(

42 adventures with Grandma

Mayatime: 12.19.12.6.9 9 Muluc 7 Zotz
06-10-2005

This morning I had barely woken up when the phone rang (7:15). A woman's voice said "Willy?" and I said "no" and before I could clarify that he was at work, she said "I have the wrong number" and hung up. The caller ID said it was the hospital. I called back and got a switchboard. I called my husband at work and asked if there was a woman missing who might have called him at home and he said no. I went to start my day, reading the news, my email, making bird food, etc. My cell phone rang. It was my mom's cell phone calling. My grandma was in the hospital with a stroke, and yes, she had hung up on me when she called earlier. (Stress, confusion, I don't know--she said she didn't recognize my voice!)
I called my husband again and he said he would come home and take me. I was surprised because he has this "thing" about grandmothers in the hospital ever since he had to be there when they pulled the plug on one of his grandmas about 12 years ago. I called in to work and fed the birds and we went.
My mother said that my grandma had called her at 4:30 saying she couldn't breathe and was calling 911. The police officer who responded with the ambulance called my mom (her number's posted by my grandma's phone) and my mom met the ambulance at the hospital. My grandmother couldn't remember calling my mom or 911, didn't know where she was, but knew the President's name and other things like that which they ask. They did a CAT scan and a chest x-ray and left her in the cubicle. When I got there just before 8:00 she had just come back from the CAT scan. She knew who I was but she seemed very weak. She was breathing harshly like I did last year when I had the terrible bronchitis.
It's terrible to just sit there and talk around someone like that, but she wasn't really responding, kind of dozing off or zoning out. My mom had left my dad at home. She called him to ask him to hang out some laundry and that took about 5 minutes to explain. I sat with my hands on my grandma's legs giving her Reiki. She took it in a gentle warm flow. (my hands are still on even as I write this at 11:00)
Apparently, I'm not sure when, my grandmother felt ill and started to vomit, and instead of vomiting (she said it was all bile, guess it runs in the family, I'm very bile-y too) she swallowed it and it went into her lungs. The ambulance people were very concerned over this (and eventually when we saw a doctor, so was he).
My husband went to get some breakfast (there's a Dunkin Donuts in the hospital) and while he was gone I asked my mom about her cousin, the one who fell in the septic tank. My grandmother started contributing to the conversation saying that the woman is 76, she's my grandpa's niece, and the shoulder she broke was the one she had polio in, and giving more details about what happened. After that she seemed okay. Will went backt to DD and got her a coffee which she drank through a straw. Then it was just sit around and wait. No one came by.
Someone was interviewing a guy out in the hall about hearing voices: "Do you hear the voices all the time? Did you tell the people you live with that you hear voices? Do you hear them right now? Is someone bothering you where you live? Who is it? Is it a staff person or another patient?"
Finally I went and talked to a nurse because my grandmother was getting terrible leg cramps and charley horses in her feet and calves and they got so bad I couldn't rub them away. I was holding her feet vertically because it seemed like the droop was causing the cramps, and that seemed to help. A few minutes later a doctor came by and recognized me from when my husband had been in the emergency room about 6 years ago--he remembered my eyes. He said my grandmother's tests were all normal for her age and she could go home if she wanted to, but if she started coughing or having fluid in her lungs she would have to be admitted for pneumonia.
So after a long wait for someone to come by and remove her IV shunt (which wasn't attached to anything) we were able to take her home, after much fussing over her lack of sunglasses and keys and her cane.
She's home now, and I guess she's going to be okay. But it was scary. My mom was freaking out--there's no way she could deal with my grandmother after a stroke and take care of my dad. She would have had to put my grandmother into a home, and that would be terrible. Not that it still might not happen, but not today.
Ometeotl. Back to the Order of the Feathered Serpent blog, if that's where you came from.

41 cat attacked!

Apparently a couple of days ago, a woodpecker attacked Jasper and injured his thick stubborn skull.
My mother said Jasper was outside under the tree, and the woodpecker was in the tree. (I don't know if it was a little black and white woodpecker like we have at our house in the Circle, or the bigger red one.) And then Jasper was at the door, crying, with his head bloody.
The cat hates me, but I am fond of him sometimes. He's cute. And my father adores him enough for three people. And I hate to see any animal injured.
I talked to my mom today and she said it scabbed over and it's not infected. I guess it didn't penetrate into his skull. She now thinks it wasn't the woodpecker at all, but a blue jay. Blue jays are really mean; I know they kill baby birds of other species, so perhaps one would attack a cat (or defend itself against a cat who tried to attack it).
Something terrible happened to my mom's cousin. She was out in her yard and a sinkhole opened into her septic tank; she fell in and was there for who knows how long. A neighboring child heard her calling for help but the child's parents didn't believe her at first. Apparently she became hysterical and forced her parents to check it out, and they found Theresa down in the filth with a broken shoulder. Other than the shoulder I guess she's okay. I haven't seen her in many years but I remember her being kind to me when I was a child, and inviting me to sleep over (which I never did).
Something terrible also happened to my husband's cousin. The story is a little confusing. He and his friend were in an SUV in a Jack in the Box drive through line in Las Vegas, where he lives. The car in front of them got the wrong order and an arguement ensued. Andy's friend beeped at the car to get them to move, and somehow the driver of that car beat Andy up, breaking his facial bones, and in all the confusion Andy's friend ran him over. Andy's friend was arrested for being drunk. Andy has all kinds of injuries to his face and feet.
My cousin better be careful; things happen in 3's.