It's not really an "un-invitation" but I guess I'm not welcome at the talk my parents are doing.
I'm baffled. They want to meet articulate people who can tell their real-life Alzheimer's stories. Here I am blogging away. Is there anything more articulate than that? Obviously I'm extremely disapointed. I might write a letter for my parents to bring.
I know I don't LIVE with my dad, but I see him all the time. I went shopping with my parents on Tuesday night and then we had dinner. I saw my father on Friday 3x--for lunch, to go to the vet and to do puzzles. And then again on Sunday. A lot of people don't see their healthy parents that much (my husband for instance, probably only sees his mom once a month or less and she lives a mile away).
My dad was pretty funny at Ruby Tuesday on Tuesday night. I guess my parents just went their last week with my mom's best friend Janet. He had the broccoli, chicken and pasta and liked it according to Mom. I ordered that for him again. He picked out all the chicken and put it on the "fat" plate (it was gorgeous chunks of white meat). He picked off all the melted cheese from the top because it was crusty. On the way home he said "I didn't like him and I don't want to go to him again." Him=Ruby Tuesday. I think his main complaint was that we weren't at 99, which gives out free popcorn.
We also went to Xpect Discount, which is across the street. The reason we went is because my parents went with Grandma last week and she had some kind of hissy fit because she was tired and sick and having a bad day and wanted to go home immediately. And I needed hair dye (always a priority, especially when my coupons are about to expire).
The first thing my dad said was "I never heard of this place. I've never been here." It's been there for probably 20 years. And he was there last week. My mom and I confused him because she would go down one aisle and I'd go down another and he would hover, not knowing who to follow with the carriage. I'd dump an armload of hair dye or whatever into the carriage and walk away and he'd be forced to stop and neatly arrange it all. How does he ever go grocery shopping with his OCD of everything having to be perfectly aligned and neat? And then he'd have to explain that he rearranged the cart and show me what he did and where it used to be. Sigh.
I was feeling really bad about not being able to go on vacation this year with them. They're going without me, of course, but still...and then my mom decided to ask Janet to come along, and she accepted, so that should be fun. Janet's never been to Plymouth so they can do all the touristy stuff I'm bored with after almost 30 years of going there. (Wow, has it been that long? I guess so-I was 9 the first time we went and now I'm, I don't know. 36? Does it matter?)
Thursday, March 30, 2006
Tuesday, March 28, 2006
trying something new
I'm trying to sign up with this BlogMad service to get more traffic. So far it's just a pain in the butt.
Saturday, March 25, 2006
64 invitation, more articles, vet visit
My parents are excited. The person running the study at Yale has invited them, out of all the people enrolled in the study, to speak to some student doctors about what it's like to live with Alzheimer's. I am hoping to be able to go with them. I'll let you know.
I had mentioned to my mother about that article with the hormone Pin1, and she mentioned to the people at the study, and they hadn't heard of it. Wow. You think they'd be more up on the literature than me, huh? So we printed out a copy and she mailed it out to one of the people there who'd expressed interest.
While we were searching for the article, I found a couple of more. Actually found a good source, better than what I was using, for articles.
The first one is about a eye test to diagnose extremely early stage AD.
Goldstein and colleagues have developed two tests that have grown out of recent stunning findings that Alzheimer's disease can be detected early by looking for amyloid beta proteins - a hallmark of Alzheimer's disease found in the brain - in the lens of the eye and its surrounding fluid. The researchers also discovered that the amyloid beta proteins in the lens produce a very unusual cataract, formed in a different place in the eye than common cataracts (which are not at all associated with Alzheimer's. ...
Okay, that is very interesting. Not that it helps my dad, but maybe they can look in his eyes and see if he's got either or both of these things. They've already taken his blood for DNA sampling, right?
Then it goes on to say:
These two technologies could someday be used to develop new tests for rapidly detecting amyloid plaques resulting from prion diseases, including mad cow, scrapie in sheep and Creutzfeldt-Jacob disease in humans.
Wait, the amyloid plaque can also be caused by mad cow disease? And isn't Creutzfeldt-Jacob what you get from being a cannibal? That's a little scary.
The second article is also interesting. It posits that AD is actually Type 3 Diabetes!
So yesterday I took my four surviving parrots to the vet. I bring all of them every spring and fall to get their beaks, wings and nails trimmed--April and October, or thereabouts. Of course I had to have Dad's help, if only to get him out of Mom's hair.
I met them for lunch as usual. I was going to suggest a quick lunch, but my mom did it first-she said Wendy's. Fine with me. I get there about 12:10 and there's two empty school buses in the parking lot. My mother walks over to me and says all the children from those two buses are inside Wendy's. There's a good reason not to go inside right there! The noise, the lines, the lack of seats...She suggested walking a couple of doors down to KFC. Fine with me, I love KFC.
My dad immediately starts fretting about the car being locked. He keeps trying the door and looking back. He can't stand that we're leaving the car out of sight. Walk five feet. "Is it looked?" Worried glance back. "Yes, it's locked." Walk five more feet. Worried glance backward. "Is it okay? did you lock it?" "Yes, I locked it." Worried glance. Walk three feet. "Did you check to make sure it's locked?" "Yes, Bob, it's locked."
You can guess what happens. We walk into KFC and my dad says, accurately, "I haven' t been here before." He squints at the menu. I establish that he wants a grilled chicken sandwich. I ask if he'd rather have fries, mashed potatoes or beans. "I don't want all that. I don't want a biscuit." He waves at the menu board. "You don't have to have a biscuit, dad. But do you want french fries? Or do you want some mashed potatoes? How about some green beans?" Too many choices. "I don't want any of that. I don't want a biscuit." Fine, just a sandwich and a soda. I take the empty cups to the soda fountain. He follows me while my mother explains to the bewildered cashier about the AD. I start filling a cup with diet pepsi for myself. "I don't want that." "That's for me and Mommy, do you want orange soda? You like orange soda." (noise of exasperation from dad) "I don't know." "Or do you want regular Pepsi? They don't have Coke." People behind us in line are looking at us like we're a family of lunatics. My dad ignores me trying to pour his soda and looks back at the menu. "Oh, I didn't see all that," he exclaims. My mom pauses in the act of paying, "Do you want something else, Bob?" "Oh, I don't know, I guess not." I fill his cup with orange soda and we go sit down.
There's not enough napkins to keep my dad happy (we get those little sporks in the packet with a small folded napkin.) My mom gets up, gets more napkins. She pours her potato wedges out. My father looks at them. "Are those mine?" She tells him to take them, rolls her eyes at me. I eat half of my mashed potatoes and pass the rest to him. He thanks me and eats them. He finishes the potato wedges. He eats a few pieces of my popcorn chicken. "How much was all this?" "Probably cheaper than Wendy's," I say. My mom tells him: $18. He freaks, we calm him down, I explain how much fast food costs these days.
A couple of hours later, after my workout, I go home, catch my birds ( always fun without help) and load them into the car. Then I pick up my dad and arrange the boxes of birds on his lap. He's always fascinated that Lance is my "original" bird and still alive. (He's 18 years old.) Being a dutiful and kind daughter, I try to make conversation. Seeing the dark clouds, I say, logically, "Do you think it's going to rain?" "Yesterday, " he says, and falls silent. Since it didn't rain yesterday, I'm not sure what he's trying to tell me. "I watered the lawn." he says finally. "That always happens, doesn't it? You water and then it rains. " "Yeah," he says, happy that I understood.
"Is this the way we're going?" He asks me. "Yes." I don't even go there to ask what that could possibly mean.
I start another conversation. "Do you think someday when it's warmer out you can wash my car?" Too many words, too many options. No answer. "Can you wash my car sometime?" Nothing. Unlike my mom, I give up when he doesn't answer.
We get to the vet early. It's busy. A guy comes out crying, a cloth bird carrier crushed in his hand. I think that his bird has died or been put to sleep and have sympathy--my loss of Goober is still fresh and sharp. A week earlier I was crying at that same counter, hugging a plastic bag containing my beautiful sweet baby wrapped in wet paper towels. But I hear them talking about surgery, and then the girl who cried with me over Goober last week comes out and says that the doctor had to do emergency surgery on a baby conure and she'll be a few minutes late. I hope that man's baby gets to live 15 years like Goober did.
We go in only five minutes late, not bad at all. The pathology report is back from Goober's necropsy. She had congenitally defective kidneys. Whether she inherited them from Scarlett (the doctor checks Scarlett's necropsy report but sees no notes of deformed kidneys) or it's because she was a hybrid, the doctor can't say. I look at Zeebo, Goober's brother. "What if his kidneys are bad too?" The vet says she wants to do some blood tests on him and then we can decide what to do, if anything needs doing. We scoop Zeebo out from his box, and I turn my back. I can't do blood, even on a pet, not needles taking blood. The vet says, "When did he start doing this?" and I turn to see him having a massive seizure. I pick him up and put him back into the box and pet him and talk to him. His seizure went on a very long time and he went so limp at the end I thought I'd lost him too. The vet says the seizure will have screwed up some of the bloodwork. Great. She takes care of the little green birds and then we're onto Lance. Predictably, he has a seizure also. I hug him and kiss him and pet him only because I can never do those things unless he's knocked out or seizing. She goes back to Zeebo, extracts his blood, cuts his parts, and he's okay, back in the box. Lance stops his fit and glares at me. He knows that I have taken advantage of him and touched him. He's a funny boy. He'll sit on my shoulder and lean against my face and lick my cheek but god forbid I should pet him anywhere but on his beak.
Zeebo has a couple of siezures on the way home but there's nothing I can do, I'm driving and he's in his box. As we are going down route 5, almost home, my father says, "I can sell some time to do that to your car."
He was answering my question "Can you wash my car sometime?" from two hours earlier.
When I got home, Will took the birds inside. I left Lance in the bathroom so we could have some cuddle time. The little green birds eagerly hopped from the box back into their cage but Zeebo had another siezure. Will didn't know what to do. He just thrust the box at me. I petted Zeebo and talked to him until he calmed down. Trying not to cry, I said, "That's what I was going to do with Goober last week. Just pet her until she came out of it." But she was dead when I got downstairs. Will said Goober's final seizure hadn't been as violent as Zeebo's. Zeebo was so whacked from so many seizures he couldn't even get out of his box. I put the whole box in his half of the cage and went to have cuddle time with Lance. (In the bathroom, away from his cage, he'll sit on me, lick me, and let me pet his beak.) Lance wasn't up for cuddling--he probably still remembered that I took unfair advantage of his seizure--so I let him ride on my head from the bathroom to the birdroom. By then Zeebo had climbed from his box so I took that out too.
Then I went back over my parents' house and did a puzzle. My father put two pieces together. He kept leaving to watch TV so I didn't spend much time with him that night.
I had mentioned to my mother about that article with the hormone Pin1, and she mentioned to the people at the study, and they hadn't heard of it. Wow. You think they'd be more up on the literature than me, huh? So we printed out a copy and she mailed it out to one of the people there who'd expressed interest.
While we were searching for the article, I found a couple of more. Actually found a good source, better than what I was using, for articles.
The first one is about a eye test to diagnose extremely early stage AD.
Goldstein and colleagues have developed two tests that have grown out of recent stunning findings that Alzheimer's disease can be detected early by looking for amyloid beta proteins - a hallmark of Alzheimer's disease found in the brain - in the lens of the eye and its surrounding fluid. The researchers also discovered that the amyloid beta proteins in the lens produce a very unusual cataract, formed in a different place in the eye than common cataracts (which are not at all associated with Alzheimer's. ...
Okay, that is very interesting. Not that it helps my dad, but maybe they can look in his eyes and see if he's got either or both of these things. They've already taken his blood for DNA sampling, right?
Then it goes on to say:
These two technologies could someday be used to develop new tests for rapidly detecting amyloid plaques resulting from prion diseases, including mad cow, scrapie in sheep and Creutzfeldt-Jacob disease in humans.
Wait, the amyloid plaque can also be caused by mad cow disease? And isn't Creutzfeldt-Jacob what you get from being a cannibal? That's a little scary.
The second article is also interesting. It posits that AD is actually Type 3 Diabetes!
By depleting insulin and its related proteins in the rodent's brains, the researchers say they have been able to replicate the progression of Alzheimer's disease. This included amyloid plaque deposits, neurofibrillary "tangles," impaired cognitive functioning, cell loss, and overall brain deterioration. All of these are characteristic of Alzheimer's disease.
"True Alzheimer's disease is a kind of insulin resistance in the brain," concluded lead researcher Dr. Suzanne M. de la Monte, a neuropathologist at Rhode Island Hospital and a professor of pathology and clinical neuroscience at Brown Medical School, in Providence, R.I. ... Whether restoring insulin to the brain can slow or reverse the progression of Alzheimer's is something that de la Monte's team is looking at now in animals. "The results are under review," she said. ...De la Monte is convinced that what doctors call Alzheimer's is really several different conditions under one umbrella. "We will have to develop ways to be certain who has what kind of neurodegeneration," she said.
Well, I'm no doctor, scientist or researcher. But it seems obvious to me how to check this. Do diabetics on insulin get AD?
So yesterday I took my four surviving parrots to the vet. I bring all of them every spring and fall to get their beaks, wings and nails trimmed--April and October, or thereabouts. Of course I had to have Dad's help, if only to get him out of Mom's hair.
I met them for lunch as usual. I was going to suggest a quick lunch, but my mom did it first-she said Wendy's. Fine with me. I get there about 12:10 and there's two empty school buses in the parking lot. My mother walks over to me and says all the children from those two buses are inside Wendy's. There's a good reason not to go inside right there! The noise, the lines, the lack of seats...She suggested walking a couple of doors down to KFC. Fine with me, I love KFC.
My dad immediately starts fretting about the car being locked. He keeps trying the door and looking back. He can't stand that we're leaving the car out of sight. Walk five feet. "Is it looked?" Worried glance back. "Yes, it's locked." Walk five more feet. Worried glance backward. "Is it okay? did you lock it?" "Yes, I locked it." Worried glance. Walk three feet. "Did you check to make sure it's locked?" "Yes, Bob, it's locked."
You can guess what happens. We walk into KFC and my dad says, accurately, "I haven' t been here before." He squints at the menu. I establish that he wants a grilled chicken sandwich. I ask if he'd rather have fries, mashed potatoes or beans. "I don't want all that. I don't want a biscuit." He waves at the menu board. "You don't have to have a biscuit, dad. But do you want french fries? Or do you want some mashed potatoes? How about some green beans?" Too many choices. "I don't want any of that. I don't want a biscuit." Fine, just a sandwich and a soda. I take the empty cups to the soda fountain. He follows me while my mother explains to the bewildered cashier about the AD. I start filling a cup with diet pepsi for myself. "I don't want that." "That's for me and Mommy, do you want orange soda? You like orange soda." (noise of exasperation from dad) "I don't know." "Or do you want regular Pepsi? They don't have Coke." People behind us in line are looking at us like we're a family of lunatics. My dad ignores me trying to pour his soda and looks back at the menu. "Oh, I didn't see all that," he exclaims. My mom pauses in the act of paying, "Do you want something else, Bob?" "Oh, I don't know, I guess not." I fill his cup with orange soda and we go sit down.
There's not enough napkins to keep my dad happy (we get those little sporks in the packet with a small folded napkin.) My mom gets up, gets more napkins. She pours her potato wedges out. My father looks at them. "Are those mine?" She tells him to take them, rolls her eyes at me. I eat half of my mashed potatoes and pass the rest to him. He thanks me and eats them. He finishes the potato wedges. He eats a few pieces of my popcorn chicken. "How much was all this?" "Probably cheaper than Wendy's," I say. My mom tells him: $18. He freaks, we calm him down, I explain how much fast food costs these days.
A couple of hours later, after my workout, I go home, catch my birds ( always fun without help) and load them into the car. Then I pick up my dad and arrange the boxes of birds on his lap. He's always fascinated that Lance is my "original" bird and still alive. (He's 18 years old.) Being a dutiful and kind daughter, I try to make conversation. Seeing the dark clouds, I say, logically, "Do you think it's going to rain?" "Yesterday, " he says, and falls silent. Since it didn't rain yesterday, I'm not sure what he's trying to tell me. "I watered the lawn." he says finally. "That always happens, doesn't it? You water and then it rains. " "Yeah," he says, happy that I understood.
"Is this the way we're going?" He asks me. "Yes." I don't even go there to ask what that could possibly mean.
I start another conversation. "Do you think someday when it's warmer out you can wash my car?" Too many words, too many options. No answer. "Can you wash my car sometime?" Nothing. Unlike my mom, I give up when he doesn't answer.
We get to the vet early. It's busy. A guy comes out crying, a cloth bird carrier crushed in his hand. I think that his bird has died or been put to sleep and have sympathy--my loss of Goober is still fresh and sharp. A week earlier I was crying at that same counter, hugging a plastic bag containing my beautiful sweet baby wrapped in wet paper towels. But I hear them talking about surgery, and then the girl who cried with me over Goober last week comes out and says that the doctor had to do emergency surgery on a baby conure and she'll be a few minutes late. I hope that man's baby gets to live 15 years like Goober did.
We go in only five minutes late, not bad at all. The pathology report is back from Goober's necropsy. She had congenitally defective kidneys. Whether she inherited them from Scarlett (the doctor checks Scarlett's necropsy report but sees no notes of deformed kidneys) or it's because she was a hybrid, the doctor can't say. I look at Zeebo, Goober's brother. "What if his kidneys are bad too?" The vet says she wants to do some blood tests on him and then we can decide what to do, if anything needs doing. We scoop Zeebo out from his box, and I turn my back. I can't do blood, even on a pet, not needles taking blood. The vet says, "When did he start doing this?" and I turn to see him having a massive seizure. I pick him up and put him back into the box and pet him and talk to him. His seizure went on a very long time and he went so limp at the end I thought I'd lost him too. The vet says the seizure will have screwed up some of the bloodwork. Great. She takes care of the little green birds and then we're onto Lance. Predictably, he has a seizure also. I hug him and kiss him and pet him only because I can never do those things unless he's knocked out or seizing. She goes back to Zeebo, extracts his blood, cuts his parts, and he's okay, back in the box. Lance stops his fit and glares at me. He knows that I have taken advantage of him and touched him. He's a funny boy. He'll sit on my shoulder and lean against my face and lick my cheek but god forbid I should pet him anywhere but on his beak.
Zeebo has a couple of siezures on the way home but there's nothing I can do, I'm driving and he's in his box. As we are going down route 5, almost home, my father says, "I can sell some time to do that to your car."
He was answering my question "Can you wash my car sometime?" from two hours earlier.
When I got home, Will took the birds inside. I left Lance in the bathroom so we could have some cuddle time. The little green birds eagerly hopped from the box back into their cage but Zeebo had another siezure. Will didn't know what to do. He just thrust the box at me. I petted Zeebo and talked to him until he calmed down. Trying not to cry, I said, "That's what I was going to do with Goober last week. Just pet her until she came out of it." But she was dead when I got downstairs. Will said Goober's final seizure hadn't been as violent as Zeebo's. Zeebo was so whacked from so many seizures he couldn't even get out of his box. I put the whole box in his half of the cage and went to have cuddle time with Lance. (In the bathroom, away from his cage, he'll sit on me, lick me, and let me pet his beak.) Lance wasn't up for cuddling--he probably still remembered that I took unfair advantage of his seizure--so I let him ride on my head from the bathroom to the birdroom. By then Zeebo had climbed from his box so I took that out too.
Then I went back over my parents' house and did a puzzle. My father put two pieces together. He kept leaving to watch TV so I didn't spend much time with him that night.
Thursday, March 23, 2006
63 a few news articles on AD drugs
I haven't got a lot of time for thorough commenting, but here they are:
Drug Appears Effective for Severe Alzheimer's Cases
Aricept, which is typically used to treat mild-to-moderate Alzheimer's disease, seems to reverse some cognitive and functional deterioration in patients with severe forms of the disease, Swedish researchers report. The potential benefit of Aricept (donepezil) to treat Alzheimer's patients with severe dementia had not been studied until now ... Winblad's team found that patients receiving donepezil experienced improvements in cognition and in their ability to perform daily activities, compared with patients receiving a placebo. ... This finding is significant, Winblad said, because the high cost of caring for Alzheimer's patients is largely due to the need for intensive caregiver attention. "You have to support the patient in every activity of life," Winblad said. "If they understand better, if they communicate better, it makes it easier for caregivers to do their job." ...
"However, even if there was some benefit to the patients, it may not be worth the effort and cost of prescribing the medication," Hogan said. "It might be that instead of helping people in the late stages of Alzheimer's disease, money might be better spent elsewhere."
Perhaps more resources should be spent on things like nursing care to improve the patient's quality of life, or helping relatives cope with the loss of a loved one, he said.
I might be wrong...but didn't they just post a story about how this drug was killing people with vascular dementia? What an all purpose drug.
And I can't comprehend that the money would be better spent in bereavement consuling? Just give up? Hey, we've got this drug, it can help, but instead we're going to help you cope with your loved one's DEATH instead of spending the money and time to improve his quality of life.
That's bullshit.
This article says that Aricept is banned in the UK. I wonder why?
And finally: Alzheimer's Pathology Linked To Single Enzyme
Alzheimer's disease is characterized by tangles of tau protein and by plaques of amyloid, but the relationship between the two is not understood. Note that this study implies that a single enzyme, dubbed Pin1, plays a central role in guarding against both formations; a lack of Pin1 may allow them to form.
Both characteristic pathological features in the brains of people with Alzheimer's disease -- the fibrillary tangles of tau protein and the amyloid plaques -- appear to arise because of a lack of an enzyme called Pin1. ... "It appears that Pin1 acts to restore misshapen amyloid precursor proteins to their original healthy shape, possibly preventing the onset of neurodegeneration and development of dementia."
GIVE MY FATHER SOME PIN1! There's actually a lot of med-speak in this article which I can't unravel. But if a pin1 defiency causes both plaque and tangles and having extra pin1 reverses it, what's the holdup? You know what Pin1 is. Let's get to it.
Drug Appears Effective for Severe Alzheimer's Cases
Aricept, which is typically used to treat mild-to-moderate Alzheimer's disease, seems to reverse some cognitive and functional deterioration in patients with severe forms of the disease, Swedish researchers report. The potential benefit of Aricept (donepezil) to treat Alzheimer's patients with severe dementia had not been studied until now ... Winblad's team found that patients receiving donepezil experienced improvements in cognition and in their ability to perform daily activities, compared with patients receiving a placebo. ... This finding is significant, Winblad said, because the high cost of caring for Alzheimer's patients is largely due to the need for intensive caregiver attention. "You have to support the patient in every activity of life," Winblad said. "If they understand better, if they communicate better, it makes it easier for caregivers to do their job." ...
"However, even if there was some benefit to the patients, it may not be worth the effort and cost of prescribing the medication," Hogan said. "It might be that instead of helping people in the late stages of Alzheimer's disease, money might be better spent elsewhere."
Perhaps more resources should be spent on things like nursing care to improve the patient's quality of life, or helping relatives cope with the loss of a loved one, he said.
I might be wrong...but didn't they just post a story about how this drug was killing people with vascular dementia? What an all purpose drug.
And I can't comprehend that the money would be better spent in bereavement consuling? Just give up? Hey, we've got this drug, it can help, but instead we're going to help you cope with your loved one's DEATH instead of spending the money and time to improve his quality of life.
That's bullshit.
This article says that Aricept is banned in the UK. I wonder why?
And finally: Alzheimer's Pathology Linked To Single Enzyme
Alzheimer's disease is characterized by tangles of tau protein and by plaques of amyloid, but the relationship between the two is not understood. Note that this study implies that a single enzyme, dubbed Pin1, plays a central role in guarding against both formations; a lack of Pin1 may allow them to form.
Both characteristic pathological features in the brains of people with Alzheimer's disease -- the fibrillary tangles of tau protein and the amyloid plaques -- appear to arise because of a lack of an enzyme called Pin1. ... "It appears that Pin1 acts to restore misshapen amyloid precursor proteins to their original healthy shape, possibly preventing the onset of neurodegeneration and development of dementia."
GIVE MY FATHER SOME PIN1! There's actually a lot of med-speak in this article which I can't unravel. But if a pin1 defiency causes both plaque and tangles and having extra pin1 reverses it, what's the holdup? You know what Pin1 is. Let's get to it.
Wednesday, March 22, 2006
62 "Leave earlier" and delayed treatment
Wow, two posts in 2 days.
I stopped by my parents' yesterday to drop something off. I also made an appointment to take my surviving birds to the vet for their spring clipping. I'm down to four. Last Thursday night, Goober had a seizure and died. The full details are on my other blog. If I'm to bring more than one box of birds to the vet, I need help. And I have to bring 3 boxes--1 with Lance, 1 with Zeebo, and 1 with Hogan and Annie. They gave me an appointment at 4 p.m. on Friday. I told my dad I'd pick him up around 3, bring him to my house (where he will stand with his hands folded, fretting about how much gas I have in the car, how much traffic we'll hit and why we haven't left already) to wait while I catch my monsters, I mean my darlings, and box them up. Tomorrow is my husband's 35th birthday so we are also going out to dinner. All this extra activity of course completely confused my dad. "So I'll see you Friday?" "No, Thursday. We're having dinner. It's Willy's birthday." "Instead of Friday?" "No, I'll see you Friday also. Remember, we're going to the vet's?" "You better put gas in your car." "I will." "So I'll see you Friday?" And so it goes.
Something happened at his friend's store. He used to go every day for a few hours. Then something happened, my mom doesn't know what, and the owner said he didn't want anyone there for more than 2 hours a day. And now my dad isn't going at all. I probably should stop there and ask if he did something specific that caused Rick to tell him to stop coming or if he misunderstood or what. But maybe I don't want to know. The end result is that my mom isn't getting a single break from him. When I suggested taking him to the vet with me she practically begged me to.
This morning there was an article on CNN.com about delayed treatment for Alzheimer's.
Stigma and denial can delay diagnosis of Alzheimer's disease for years, meaning patients do not receive treatment that could slow its progress....When spouses or other relatives who care for patients are concerned about the stigma associated with the disease, delay of the diagnosis averages 6 years after symptoms first appear...Any delay in diagnosis is a setback for people with Alzheimer's disease and their caregivers -- and a delay of two years or more is a serious and unnecessary setback.
I'll admit that probably we could have brought my dad sooner to the doctor's. But two years sooner? Yes, with hindsight, he probably started deterioating five years before. I remember talking to my husband about it, saying that when my dad hit 55 it seemed like he made himself old. He wasn't himself anymore. But who thinks of Alzheimer's then? At 55, you can slow down. It's not a crime.
I stopped by my parents' yesterday to drop something off. I also made an appointment to take my surviving birds to the vet for their spring clipping. I'm down to four. Last Thursday night, Goober had a seizure and died. The full details are on my other blog. If I'm to bring more than one box of birds to the vet, I need help. And I have to bring 3 boxes--1 with Lance, 1 with Zeebo, and 1 with Hogan and Annie. They gave me an appointment at 4 p.m. on Friday. I told my dad I'd pick him up around 3, bring him to my house (where he will stand with his hands folded, fretting about how much gas I have in the car, how much traffic we'll hit and why we haven't left already) to wait while I catch my monsters, I mean my darlings, and box them up. Tomorrow is my husband's 35th birthday so we are also going out to dinner. All this extra activity of course completely confused my dad. "So I'll see you Friday?" "No, Thursday. We're having dinner. It's Willy's birthday." "Instead of Friday?" "No, I'll see you Friday also. Remember, we're going to the vet's?" "You better put gas in your car." "I will." "So I'll see you Friday?" And so it goes.
Something happened at his friend's store. He used to go every day for a few hours. Then something happened, my mom doesn't know what, and the owner said he didn't want anyone there for more than 2 hours a day. And now my dad isn't going at all. I probably should stop there and ask if he did something specific that caused Rick to tell him to stop coming or if he misunderstood or what. But maybe I don't want to know. The end result is that my mom isn't getting a single break from him. When I suggested taking him to the vet with me she practically begged me to.
This morning there was an article on CNN.com about delayed treatment for Alzheimer's.
Stigma and denial can delay diagnosis of Alzheimer's disease for years, meaning patients do not receive treatment that could slow its progress....When spouses or other relatives who care for patients are concerned about the stigma associated with the disease, delay of the diagnosis averages 6 years after symptoms first appear...Any delay in diagnosis is a setback for people with Alzheimer's disease and their caregivers -- and a delay of two years or more is a serious and unnecessary setback.
I'll admit that probably we could have brought my dad sooner to the doctor's. But two years sooner? Yes, with hindsight, he probably started deterioating five years before. I remember talking to my husband about it, saying that when my dad hit 55 it seemed like he made himself old. He wasn't himself anymore. But who thinks of Alzheimer's then? At 55, you can slow down. It's not a crime.
Tuesday, March 21, 2006
61: sad but true Alzheimer's joke: Alzheimer's research vs Viagra and breast implants
A friend just sent this to me:
There is more money being spent on breast implants and Viagra today than on Alzheimer's research. This means that by 2040, there should be a large elderly population with perky boobs and huge erections and absolutely no recollection of what to do with them.
I did attempt to do the reseach to back up these figures. I found a report on spending for cosmetic surgery but it costs $3,000 to purchase. Maybe I'll throw it out on Yahoo answers.
Revision: I did find this much, from http://www.alz.org/AboutAD/statistics.asp: "The federal government estimates spending approximately $647 million for Alzheimer’s disease research in fiscal year 2005."
So I still have to find out how much on Viagra and boob implants.
I found that in 2005, In the first quarter of last year (2005), Viagra network TV spending approached $11 million.
Okay, here's more: Last year's (2005) world sales for the medications were about $2.7 billion, SunTrust Robinson Humphrey estimates. (for all 3 "impotence" drugs: Cialis, Levitra, & Viagra)
So right there, that figure blows the Alzhiemer's research money totally away. It's more than four times as much.
Okay, here's the boob figure. It's from 2004, but I'm sure in 2005 it was only more. From Forbes: The average fee for augmentation surgery is $3,373, according to the American Society of Plastic Surgeons, making total spending for the surgery $890.6 million in 2004.
Or 1.3x the spending on Alzheimer's research.
You know what? Doing this research just made me sick to my stomach. And to my heart.
There is more money being spent on breast implants and Viagra today than on Alzheimer's research. This means that by 2040, there should be a large elderly population with perky boobs and huge erections and absolutely no recollection of what to do with them.
I did attempt to do the reseach to back up these figures. I found a report on spending for cosmetic surgery but it costs $3,000 to purchase. Maybe I'll throw it out on Yahoo answers.
Revision: I did find this much, from http://www.alz.org/AboutAD/statistics.asp: "The federal government estimates spending approximately $647 million for Alzheimer’s disease research in fiscal year 2005."
So I still have to find out how much on Viagra and boob implants.
I found that in 2005, In the first quarter of last year (2005), Viagra network TV spending approached $11 million.
Okay, here's more: Last year's (2005) world sales for the medications were about $2.7 billion, SunTrust Robinson Humphrey estimates. (for all 3 "impotence" drugs: Cialis, Levitra, & Viagra)
So right there, that figure blows the Alzhiemer's research money totally away. It's more than four times as much.
Okay, here's the boob figure. It's from 2004, but I'm sure in 2005 it was only more. From Forbes: The average fee for augmentation surgery is $3,373, according to the American Society of Plastic Surgeons, making total spending for the surgery $890.6 million in 2004.
Or 1.3x the spending on Alzheimer's research.
You know what? Doing this research just made me sick to my stomach. And to my heart.
Thursday, March 16, 2006
60: patients die on Aricept in drug trial
Just now posted to Yahoo news:
Eleven patients die in Eisai drug trial
Eleven patients have died while takingAlzheimer's disease drug Aricept during a clinical trial, Japan's Eisai Co., which makes the medicine, said on Thursday.
There were no deaths among patients who were taking a placebo, said Eisai, which markets Aricept with Pfizer Inc.
The drug treats mild to moderate Alzheimer's disease, but was being tested in patients with vascular dementia, the second most common form of dementia after Alzheimer's disease.
That's a little scary. But it goes on to say that the problem with this study is that zero people in the control group died. Usually some die (of unrelated factors).
Eleven patients die in Eisai drug trial
Eleven patients have died while takingAlzheimer's disease drug Aricept during a clinical trial, Japan's Eisai Co., which makes the medicine, said on Thursday.
There were no deaths among patients who were taking a placebo, said Eisai, which markets Aricept with Pfizer Inc.
The drug treats mild to moderate Alzheimer's disease, but was being tested in patients with vascular dementia, the second most common form of dementia after Alzheimer's disease.
That's a little scary. But it goes on to say that the problem with this study is that zero people in the control group died. Usually some die (of unrelated factors).
Tuesday, March 14, 2006
59 potassium, Alzheimer's, paper plates & puzzles
Saw an article today online which said a blood pressure drug seems to lower the risk of getting AD. Not that it helps my dad, who is firmly in the tentacles of dementia, but here's an extract:
Medications used to combat high blood pressure appear to be linked to a lower incidence of Alzheimer's disease, according to a study published on Monday. Whether there is a true cause and effect relationship needs further study, said the report ... While all hypertension medications in the study seem to have an impact, the greatest reduction in the risk of Alzheimer's disease was found in those taking diuretics, which cause the kidneys to excrete water and salt but spare the elimination of potassium. Unpublished findings from another study "suggest that increased potassium levels may be associated with a reduced risk of dementia," said the study, while other researchers have found that low potassium concentrations are associated with changes in the brain that may lead to Alzheimer's disease. While high blood pressure is thought to raise the risk of Alzheimer's, "the protective effects of these antihypertensive medications may be independent of their ability to control blood pressure," the study said.
To my knowledge, my dad doesn't have HBP and never has. He had a problem with his cholesterol a long time ago, but then he changed his diet and lowered it. That's the beginnings of his obession with cutting meat to death. He used to be a steak and potatoes kind of guy, and one of the things he did to lower his cholesterol was cut way down on red meat and de-fat it. (Not sure the fat has anything to do with it; my cholesterol is amazingly low so I don't have to watch it.)
Speaking of cutting meat to death, I don't know if I ever mentioned this before. A year ago, maybe more, I noticed that when we were all at my grandmother's on Sunday nights for dinner, everyone got a paper or styrofoam plate to eat off of...except my dad. Even if we were having "sandwiches" (meaning a plate of cold cuts and hard rolls) my dad would have a real, hard, breakable plate which had to be washed. Seems like it should be the opposite right?
My mom and grandmother told me when I wondered aloud, half joking, "Why does Daddy get a good plate?" that he had been cutting THROUGH his paper plate and into my grandmother's table with his obessessive cutting. And whenever we had something with sauce or gravy ("juice" as in," give me some of that juice") he put so much on his plate it would soak through and stain the table. Not sure what he was doing with sandwiches that made him deserve a real plate. And of course, he's as oblivious to the fact that he's got a special plate as he was to the fact that he was cutting through his paper plate. Not to mention the farting which he claims not to be doing. Although he doesn't seem to fart as bad at my grandmother's. Or maybe I don't notice it because my grandmother's sitting next to me belching away, not making any attempt to swallow or stifle the burps or even cover her mouth or pause her conversation.
Not last Sunday, but the Sunday before, we started a new puzzle at Grandma's. It was actually a cool puzzle. It was a vat of Cracker Jacks and half-buried in the vat were boxes of Cracker Jack. We made progress on putting together part of the outside and starting to sort the pieces. I told my grandmother I'd come over the next day and help her with it.
That was the day I ran into my friend from high school who's got cancer. I believe I talked about it in my old shaman blog. (I have a new shaman blog now.) So I was shaken and upset when I got to my grandma's--to find that she had taken apart the Cracker Jack puzzle and started a new one. I did the outside of that one for her and also the sky before I went home, took the cracker jack puzzle upstairs and started sorting the pieces on the bed.
My Aunt Bert (who died of Alzheimer's a couple of years ago) also did puzzles and what I learned from her is that the bumps and holes in puzzle pieces are called "pookles". My mom also picked that word up from Aunt Bert, so we'll say, "Do you have a piece with three out-pookles?" My grandmother can't pronounce the word or understand the concept. What my mom and I like to do after we've done all the parts of the puzzle that are easy to do by color, is to sort the pieces by shape. Four out pookles, four in pookles, traditional pookle (2 in, 2 out, on opposite sides), people pookle (1 out, 3 in, looks like a person) and corner pookle (3 out pookles on the corner with one in) .
For your entertainment, here is my basic pookle chart. There are other pookles, but these are the standard ones which most puzzles have:
Medications used to combat high blood pressure appear to be linked to a lower incidence of Alzheimer's disease, according to a study published on Monday. Whether there is a true cause and effect relationship needs further study, said the report ... While all hypertension medications in the study seem to have an impact, the greatest reduction in the risk of Alzheimer's disease was found in those taking diuretics, which cause the kidneys to excrete water and salt but spare the elimination of potassium. Unpublished findings from another study "suggest that increased potassium levels may be associated with a reduced risk of dementia," said the study, while other researchers have found that low potassium concentrations are associated with changes in the brain that may lead to Alzheimer's disease. While high blood pressure is thought to raise the risk of Alzheimer's, "the protective effects of these antihypertensive medications may be independent of their ability to control blood pressure," the study said.
To my knowledge, my dad doesn't have HBP and never has. He had a problem with his cholesterol a long time ago, but then he changed his diet and lowered it. That's the beginnings of his obession with cutting meat to death. He used to be a steak and potatoes kind of guy, and one of the things he did to lower his cholesterol was cut way down on red meat and de-fat it. (Not sure the fat has anything to do with it; my cholesterol is amazingly low so I don't have to watch it.)
Speaking of cutting meat to death, I don't know if I ever mentioned this before. A year ago, maybe more, I noticed that when we were all at my grandmother's on Sunday nights for dinner, everyone got a paper or styrofoam plate to eat off of...except my dad. Even if we were having "sandwiches" (meaning a plate of cold cuts and hard rolls) my dad would have a real, hard, breakable plate which had to be washed. Seems like it should be the opposite right?
My mom and grandmother told me when I wondered aloud, half joking, "Why does Daddy get a good plate?" that he had been cutting THROUGH his paper plate and into my grandmother's table with his obessessive cutting. And whenever we had something with sauce or gravy ("juice" as in," give me some of that juice") he put so much on his plate it would soak through and stain the table. Not sure what he was doing with sandwiches that made him deserve a real plate. And of course, he's as oblivious to the fact that he's got a special plate as he was to the fact that he was cutting through his paper plate. Not to mention the farting which he claims not to be doing. Although he doesn't seem to fart as bad at my grandmother's. Or maybe I don't notice it because my grandmother's sitting next to me belching away, not making any attempt to swallow or stifle the burps or even cover her mouth or pause her conversation.
Not last Sunday, but the Sunday before, we started a new puzzle at Grandma's. It was actually a cool puzzle. It was a vat of Cracker Jacks and half-buried in the vat were boxes of Cracker Jack. We made progress on putting together part of the outside and starting to sort the pieces. I told my grandmother I'd come over the next day and help her with it.
That was the day I ran into my friend from high school who's got cancer. I believe I talked about it in my old shaman blog. (I have a new shaman blog now.) So I was shaken and upset when I got to my grandma's--to find that she had taken apart the Cracker Jack puzzle and started a new one. I did the outside of that one for her and also the sky before I went home, took the cracker jack puzzle upstairs and started sorting the pieces on the bed.
My Aunt Bert (who died of Alzheimer's a couple of years ago) also did puzzles and what I learned from her is that the bumps and holes in puzzle pieces are called "pookles". My mom also picked that word up from Aunt Bert, so we'll say, "Do you have a piece with three out-pookles?" My grandmother can't pronounce the word or understand the concept. What my mom and I like to do after we've done all the parts of the puzzle that are easy to do by color, is to sort the pieces by shape. Four out pookles, four in pookles, traditional pookle (2 in, 2 out, on opposite sides), people pookle (1 out, 3 in, looks like a person) and corner pookle (3 out pookles on the corner with one in) .
For your entertainment, here is my basic pookle chart. There are other pookles, but these are the standard ones which most puzzles have:
Wednesday, March 08, 2006
58 No vacation with dad this year
My cousin (grandson of the aunt who died of Alzheimer's in 2004) is getting married this summer, 2 days before my birthday. The original plan was that he was going to get married on a cruise ship. But he changed his mind; he's getting married in Las Vegas. I've never been, don't particularly WANT to go, but he's pretty much all I've got for family besides my parents and grandma. So I'll be there the week of 4th of July. Since we were going to go to Cape Cod again the second week of August, that's not going to happen. I can't get that much time off. And I can't afford it--I don't get vacation pay.
I feel bad. I should be spending time with my dad. And given the choice, I'd rather spend a week on the beach in Plymouth than in the freakin' desert.
I feel bad. I should be spending time with my dad. And given the choice, I'd rather spend a week on the beach in Plymouth than in the freakin' desert.
Saturday, March 04, 2006
57 Wedding Ring
Mayatime:12.19.13.1.16 3 Cib 14 Kayab
Yesterday was Friday, so I had lunch with my parents (99 restaurant). My dad likes the free popcorn. My mother and I have taken to ordering his food for him which is just much easier. He can read the menu okay and pick something (have I had this before? What do I like here? No, that's not it.) but it's hard for him to explain to the waiter.
Our appetizer came (potato skins) and I was putting one on my dad's plate when suddenly he freaked out. "Oh no, it's gone, oh no, I'm never going to get it back, I've had it for 30 years". He might have been crying a little, I couldn't tell. He didn't have on his wedding ring. And BTW, he's had it for 39 years, but who's counting? He had been working at his friend's store rolling change and he washed his hands and took it off in the bathroom. He was convinced someone would steal it. He pushed away his plate "I don't care about any of that, I have to go get it right now" and he started getting up to leave. He was probably going to walk. (Only a couple of miles, but along Route 5-very dangerous.) He was getting louder and louder and my mother and I couldn't calm him down. The chances of someone stealing his ring from the bathroom of a hole-in-the-wall store are very slim. Thank god for cell phones. I whipped mine out, called the store, and of course his friend had found the ring and put it away in an envelope in the cash register for my dad. The ring was safe. My father doesn't comprehend cell phones AT ALL so he couldn't understand how I knew that Rick had put the ring away for him. Probably I should have just driven him down the street to get the ring, but at least he believed me and calmed down to eat his potato skins. But then he forgot to use the sour cream and he was upset and tried to put all the sour cream on his last piece. (You can imagine the mess.) He always tries to give me the last piece even though the platter comes with 9 and we each get 3. And he always tries to share the sour cream although my mom and I don't like it.
That night I went over around 6:30 to do a puzzle. It was a lighthouse puzzle. I thought I'd done it before (I do every puzzle twice, once with Grandma on a Sunday and once with parents on a Friday) but I hadn't. It was really easy--500 pieces, we finished a little after 9:00. My dad likes to put together all the birds and animals so he did the seagulls and put aside a piece with a butterfly on it. Then he said "his favorite" show was on. My mom thought it was some car auction show he likes, but it was actually the movie "Gone in 60 Seconds" with Nicolas Cage. He was talking quite loudly at the TV. When he talks to the TV, like when he talks to my birds and the cats, he talks okay.
When there was a commercial he'd come in to view the puzzle, let out a couple of juicy farts ("What? Why are you laughing?" "Nothing.") and wander off again. He swears he isn't farting. I just make my mother light a candle as soon as I get there. Some of them are not only juicy-sounding but eye-watering. I don't know HOW he can't know. Usually when he gets out of booth at a restaurant he lets one or two rip also. So gross, but what can I do? I kinda wish we could make him wear a T-shirt that says "I've got Alzheimer's, please forgive me." But that would make him look like even more of a freak.
My mother told me she got in a fight with him over something and she was yelling at him. I wish she wouldn't yell at him; I told her to take a walk or something but she says I can't know what it's like, and she's right. But she said later that day he laughed at her and said "wanna fight again?" and she thinks he might enjoy it. When she tells me something like that, or I see it for myself, I know my dad's still in there.
My thing is, if he ignores me or doesn't hear me or isn't in his head at the moment, I don't push it. I say, "Hey dad......Hey dad.....Hey dad..." or whatever and then I continue on with whatever I was doing. My mother and my grandmother will push him, "Berta's talking to you" and all he'll do is look at me and say hello like he didn't know I was in the room, even if I've been there an hour sitting next to him. Sometimes if I call him Bob he listens. It's weird to call my dad by his name but whatever works right? When we finished the puzzle last night I called him about five times and then I was just going to leave when he finally said "Did you finish it?" and came in to look. Then he says "don't throw it away" meaning don't take it apart. If it was up to him every puzzle we'd ever done would be shellacked and on the wall.
My mom said yelling at him works sometimes. But how? It works at that moment, but it doesn't work in the future. He won't remember "when I do this someone yells at me." It seems like rubbing your pet's nose in its mess--it just pisses off your pet.
Yesterday was Friday, so I had lunch with my parents (99 restaurant). My dad likes the free popcorn. My mother and I have taken to ordering his food for him which is just much easier. He can read the menu okay and pick something (have I had this before? What do I like here? No, that's not it.) but it's hard for him to explain to the waiter.
Our appetizer came (potato skins) and I was putting one on my dad's plate when suddenly he freaked out. "Oh no, it's gone, oh no, I'm never going to get it back, I've had it for 30 years". He might have been crying a little, I couldn't tell. He didn't have on his wedding ring. And BTW, he's had it for 39 years, but who's counting? He had been working at his friend's store rolling change and he washed his hands and took it off in the bathroom. He was convinced someone would steal it. He pushed away his plate "I don't care about any of that, I have to go get it right now" and he started getting up to leave. He was probably going to walk. (Only a couple of miles, but along Route 5-very dangerous.) He was getting louder and louder and my mother and I couldn't calm him down. The chances of someone stealing his ring from the bathroom of a hole-in-the-wall store are very slim. Thank god for cell phones. I whipped mine out, called the store, and of course his friend had found the ring and put it away in an envelope in the cash register for my dad. The ring was safe. My father doesn't comprehend cell phones AT ALL so he couldn't understand how I knew that Rick had put the ring away for him. Probably I should have just driven him down the street to get the ring, but at least he believed me and calmed down to eat his potato skins. But then he forgot to use the sour cream and he was upset and tried to put all the sour cream on his last piece. (You can imagine the mess.) He always tries to give me the last piece even though the platter comes with 9 and we each get 3. And he always tries to share the sour cream although my mom and I don't like it.
That night I went over around 6:30 to do a puzzle. It was a lighthouse puzzle. I thought I'd done it before (I do every puzzle twice, once with Grandma on a Sunday and once with parents on a Friday) but I hadn't. It was really easy--500 pieces, we finished a little after 9:00. My dad likes to put together all the birds and animals so he did the seagulls and put aside a piece with a butterfly on it. Then he said "his favorite" show was on. My mom thought it was some car auction show he likes, but it was actually the movie "Gone in 60 Seconds" with Nicolas Cage. He was talking quite loudly at the TV. When he talks to the TV, like when he talks to my birds and the cats, he talks okay.
When there was a commercial he'd come in to view the puzzle, let out a couple of juicy farts ("What? Why are you laughing?" "Nothing.") and wander off again. He swears he isn't farting. I just make my mother light a candle as soon as I get there. Some of them are not only juicy-sounding but eye-watering. I don't know HOW he can't know. Usually when he gets out of booth at a restaurant he lets one or two rip also. So gross, but what can I do? I kinda wish we could make him wear a T-shirt that says "I've got Alzheimer's, please forgive me." But that would make him look like even more of a freak.
My mother told me she got in a fight with him over something and she was yelling at him. I wish she wouldn't yell at him; I told her to take a walk or something but she says I can't know what it's like, and she's right. But she said later that day he laughed at her and said "wanna fight again?" and she thinks he might enjoy it. When she tells me something like that, or I see it for myself, I know my dad's still in there.
My thing is, if he ignores me or doesn't hear me or isn't in his head at the moment, I don't push it. I say, "Hey dad......Hey dad.....Hey dad..." or whatever and then I continue on with whatever I was doing. My mother and my grandmother will push him, "Berta's talking to you" and all he'll do is look at me and say hello like he didn't know I was in the room, even if I've been there an hour sitting next to him. Sometimes if I call him Bob he listens. It's weird to call my dad by his name but whatever works right? When we finished the puzzle last night I called him about five times and then I was just going to leave when he finally said "Did you finish it?" and came in to look. Then he says "don't throw it away" meaning don't take it apart. If it was up to him every puzzle we'd ever done would be shellacked and on the wall.
My mom said yelling at him works sometimes. But how? It works at that moment, but it doesn't work in the future. He won't remember "when I do this someone yells at me." It seems like rubbing your pet's nose in its mess--it just pisses off your pet.
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