Monday, July 31, 2006

88 another voice in the AD world (guest speaker here)

This is from an email sent to me by a woman who runs the Unforgettable Fund. She is very wise and with her permission I will be posting some of her comments now and again.

Hi Bert,
They ran a big article on the Unforgettable Fund today in our local paper.
Having been in advertising for my entire career, I always laugh when
"experts" say a plan is needed. If that were the case, all these great
"plans" would have solved the ills of the world already. Truth is, plans are
simple, you can buy them. Beating Alzheimer's takes much more than a plan. It takes something much harder than a plan. What it takes is the truth. And the truth is, without people suffering from the effects of Alzheimer's facing the fact it's going to take money, and time, and energy, and strength, and gritted teeth to beat this disease, it will remain unstoppable, untreatable and a death sentence.

Either we pay now, or we'll be paying later. I believe the world is full of
people like you and me. And when given the chance to put their money where
their mouth is, no matter how small the contribution, they will do so.

Alzheimer's is like no other disease. With cancer, with diabetes, with high
blood pressure, with manic depression, there are survivors. There are people
who beat the odds, no matter how stiff. Everyone with Alzheimer's dies. And before they do they lose their minds. Each and every one. There is no

The eleven years I went through I lost something more every day. I will not
lose another thing to Alzheimer's. And neither should you. You have a
wonderful quote about beating Alzheimer's with a bat. I hear you.

If you keep an open mind, which I believe you have, this disease will teach
you more about fighting than anything else. I do NOT like to be held captive
by anything, especially love for a dying man. But I was incapable of doing
more than just watching him lose everything. I bathed and fed and comforted
him as best I could. But he's gone, The disease is still here. And my hands
are no longer tied.

My father's eleven year struggle will stand for nothing but immeasurable loss,
unless we can find a way to reach the world with a simple message - FIGHT

I'm ranting on a Sunday morning. Good lord. Gotta go have some coffee.
Thanks for listening, Bert. It's hard to put in words how much it helps to
share this with someone going through the same thing.


We may be two entirely different people, and to be honest, the pagan high priestess status is a little disconcerting, but if I, a staunch, liberal Democrat, could find common ground with Jeb Bush, a conservative, Republican governor, I think there is plenty of room for you and I to completely and totally agree. Alzheimer's doesn't care what I believe in, or who I pray to, or what candidate I support. It takes with complete abandon and total lack of discrimination. The tools of this disease - its relentlessness, its never-giving-up nature- are what I intend to use against it. Beat it at its own game.

Alike or not, we are in complete agreement about what this disease feels like when it attacks a parent. I know what you're talking about. I hear it loud and clear, and your voice is honest and true. It's what attracted me you your blog in the first place. It isn't often we hear the truth, but we know it as soon as we hear it. I'm not so sure about the spiritual side of things, but your exactly right about Alzheimer's. We're tied at the hip and I would be honored to have you post my letter on your blog.

Next t-shirt: The Golden Years are Lead.

Sunday, July 30, 2006

87 inside an AD head

I try to imagine what's going on in my dad's mind. From the bits of words and phrases, I try to reconstruct what I THINK he means, or what I THINK he's thinking. But it occurs to me that my thoughts about his thoughts might not be any more accurate then when I think I know what my cats or lories are thinking. It's all just projection right, and I can no more know what's in the pea-sized brain of my beloved Lancebird than I can guess what's in the ever-shrinking brain of my dad.
Friday night I was leaving my parents house and he followed me out to the car. I can't remember exactly what he said, but I understood him to mean that he wanted to walk me out to my car so nothing bad happened to me. In my delusions of thinking I know what my dad thinks, I imagined that even though my name escapes him, he knows I am precious to him in some way and therefore I must be kept safe.
But I also see him do things that are just conditioning, like saying "thank you" to me when my mom just bought me lunch. So maybe somewhere in the back of his mind is conditioning that a man walks a woman to her car when it's dark out and it's got nothing to do with him caring about me or wanting me to be safe.
When I was over there on Friday night the Red Sox game was delayed due to a ferocious rainstorm (which we had gotten earlier) and the channel was running great moments in Red Sox history and all kinds of boring blathering and my father was swearing at it constantly. My mom and I kept one ear on it so as they updated when the game would start we would tell him, and it was if we were getting our information directly from the gods, even though it came through the same TV he was watching. My mom said he gets frustrated with TV shows with a lot of talking like that, because he can't follow it anymore and gets confused.
His new job on Fridays is to separate the edges from whatever puzzle we're doing. I had picked up a box of 3 fantasy puzzles -2 500 pc and 1 1000- for $4 at Christmas Tree Shop. My mom gave him one of the 500 pc puzzles to pull the edges out. The way the puzzles were packed in the box was strange. Usually in a multi-puzzle box each puzzle is in its own bag. The 1,000 pc puzzle was loose in the box and two smaller bags contained the 500 pc puzzle. My mom opened one of the 500 pc bags...but she also gave him the whole box. He managed to mix the two puzzles together. Not completely, but somehow quite a few pieces from the 500 pc bag made their way into the loose pieces in the box. My mom luckily noticed that the 500 pc puzzles had blue backing and the 1000 pc puzzle had beige backing so we fished out all (we hope) that got mixed in. But she learned not to give my dad more than one puzzle at once. Just too confusing for him.
The dog, Ace, knows how to fetch. He has a latex squeaky toy my mom calls "the baby" and he loves it and brings it to bed with him at night. The toy isn't a baby, it's some kind of monster, not even remotely human shaped. He bites it and paws it and makes it squeak, and if you pick it up (or wrestle it away from him, which he really likes) he barks until you throw it, and then he runs so fast he skids to get it and bring it back. When Ace barks my dad puts his hands over his ears and freaks out. It's a very childish reaction. The dog doesn't really bark that loud.
The other thing the dog does, only to me, is to climb me so that his back paws are on my chest and his front paws are on my shoulder or my head. Then he does this funny little thing which sounds like talking, like he's doing a running commentary on something, and he also howls and huffs and makes all kinds of noises. If I join him and we "sing" he gets positively gleeful, putting his head back and howling like a wolf and then licking me and squirming with excitement. He was biting my nose and my ears and wagging his tail so hard I thought he was going to fall right off me. My mom was laughing hysterically and I couldn't ask for help because if I opened my mouth there'd be a dog tongue in there. Alf used to attack me and lick my face insanely too. I must taste good to daschunds.

Wednesday, July 26, 2006

86 Daddy daycare & some AD news

My mom called me today to say that my dad was accepted into the local program after the woman in charge talked to some of my dad's doctors and caregivers at Yale. It's 3 days a week, 5 hours a day, for only $15 a day. So $45 a week, plus $2 a day for food and $.25 for coffee. $51.75 a week, and my mom gets all that time to herself. $3 an hour. You can't get any kind of sitting for that price. What a deal. He's not starting for a few weeks because they're going on vacation.
I have no idea what they will do with him. Of course he's already complaining that he doesn't want to go. But he sits home doing nothing, or taking all day to read the paper, or talking to the cat and dog. He needs to get out and be stimulated.

Some recent Alzheimer's news:

Midlife Obesity Raises Risk of Alzheimer's Disease Later
People who are overweight or obese in their 40s have a greater risk of developing AlzheimerÂ’s disease later in life....Those with higher skinfold measurements in their 40s were more likely to develop AlzheimerÂ’s disease than those with smaller skinfold measurements. Those in the highest group of shoulder skinfold measurements were nearly three times as likely to develop AlzheimerÂ’s disease as those in the lowest group.....These findings are important because obesity and overweight are treatable and modifiable risk factors....

This is important to me as I am obese, and having a 1st degree relative with AD already gives me a 50% chance of getting it.

Something about this article doesn't ring true. Because I got it through Google news, it's very hard to find the original URL.
Applying brakes to symptoms of Alzheimer's with a tiny implant In what holds promise for a large number of Alzheimer's patients, a breakthrough has arrived in the form of an inch long contraption designed to be implanted under the skin on the abdomen. Indeed a promising treatment option, this implant contains a medicine that is slowly pumped into the patient's blood stream. According to the results of the clinical trails of this implant, the medicine is capable of retarding the progress of the disease for up to a year. Each contraption is designed to last up till 6 months, all the while letting out a consistent dosage to control the symptoms of Alzheimer's. Once the contents of device are completely used up, it simply blends into the blood stream, without causing any harm.
Notice that it really doesn't give any details and is kind of a "sounds too good to be true" scenario. And the use of non-scientific words like "contraption" really raises my doubts. What drug? What drug company? What symptoms? What country?

My parents walk miles every day and have for years. So they're saying my dad would be even WORSE otherwise?! I understand that doing lots of new things and doing old things new ways builds extra brain pathways, but does that really help?

Keeping Mind And Body Active Slows Alzheimer's
Researchers have uncovered the pathways behind the protection offered by environmental stimulation in Alzheimer's disease, further confirming that enhanced mental and physical activity slows neurological decline....Although previous studies have shown that increased mental and physical activity can slow the progression of the disease, how such deceleration occurs has been unclear until now.

Go to the link to read the article, which is about a study done with mouse toys that I don't completely follow. How I wish now I had stayed a biology majfocusedsed in genetics!

This drug sounds similar to the one my dad is testing ,but it's in a pill form. I'm not sure how fast the one at Yale works though.

How one pill a day could beat Alzheimer's Researchers in Australia have developed a once-a-day pill they believe may prove a vital weapon against the illness and provide hope for thousands of victims....The drug stops the build-up of a protein called amyloid, which many scientists accept is a major cause of the disease. The professor said the drug could significantly prevent Alzheimer's developing or delay its onset for many years. Early clinical testing has confirmed PBT2 is fast-acting. Levels of amyloid dropped by 60 per cent within 24 hours of a single dose. It also found it suppressed the impairment of memory function.

Friday, July 21, 2006

85 AD news & new way to donate to research

A woman who frequents my blog who lost her father to AD this year started a blog and a website about AD, both called "The Unforgettable Fund". Through the website you can donate directly to AD research at the Scripps Institute in Florida. 100% of what they receive is passed on. I've added links along my sidebar to both places. Please visit them.

Seems like every time I take a minute to check the Health news, I find new information on Alzheimer's, which is oh-so-good.
Alzheimer's skin patch
Alzheimer's patients may soon get the first skin patch to treat the creeping brain degeneration, a novel way to deliver an older drug so that it's easier to take and might even work a little better.
The patch, which infuses the drug Exelon through patients' skin, headlines a trio of innovative potential treatments unveiled Wednesday at an Alzheimer's meeting in Spain. Also under study are a prostate cancer drug that may help dementia, too, and an immune therapy to ward off the sticky gunk that is Alzheimer's brain-clogging hallmark.
Could anything be easier? My dad HATES his pills. Then again, would he leave a patch on? He's such a compulsive skin picker he'd probably rip it off. Then again, he doesn't take Exelon. And I didn't know that patches had to go through the FDA separately. I guess they have to prove the medicine can be absorbed through the skin at the proper rate. And don't you LOVE these medical terms: "Sticky gunk"? Beta amyloid plaque. Say it. It's not so difficult.
The article goes on to give these scary facts:
About 4.5 million Americans have Alzheimer's, a toll expected to reach a staggering 14 million by 2050 with the graying of the population. It gradually robs sufferers of their memories and ability to care for themselves, eventually killing them.
In 2050 I'll be 82.
The other 2 drugs mentioned are:
Two experimental treatments that aim to fight that plaque buildup:
_Leuprolide, an anti-hormone drug currently used to treat prostate cancer and uterine disorders. .... 51 percent of leuprolide patients either stayed stable or showed a slight improvement, versus 35 percent of "control" patients.
_Antibodies, immune system cells created to soak up beta-amyloid so it can't clog the brain....Patients didn't show symptom improvement, but over the next few weeks, the beta-amyloid in their blood rose sharply. Presumably, the antibodies had sucked some of the sticky substance from the brain, sequestering it so the body could break it down.
In 2002, competitor Elan Corp. tested a vaccine designed to spur the body to create its own amyloid-clearing antibodies. That research was halted when some participants developed brain inflammation, even though others seemed to clearly improve. Now Elan and Lilly have both created their own versions of antibodies, a vaccine alternative, and begun second-stage testing.
That's the study my dad's in!

Immune Therapy and Alzheimer's
Infusing human antibodies into people with Alzheimer's disease appears to slow disease progression and may even improve the patients' condition a little, researchers reported on Tuesday.
Six of eight patients given intravenous immunoglobulin (IVIg) for 18 months appeared to develop better brain function...This study suggests that IVIg can exert long-term benefits for the treatment of cognitive decline in Alzheimer's.
This article gives a world-wide stat of 12 million AD sufferers.

Women with Alzheimer's lose weight
Women destined to be diagnosed with Alzheimer's disease often show a reduction in body weight many years before symptom onset, new research shows. However, men who develop this neurologic disorder do not show any weight changes.
Ten years before patients developed the expected symptoms of Alzheimer's disease, their weights were subtly dropping....Three possible explanations for these observations:
First, early Alzheimer's disease is associated with apathy and this could mean that affected patients are less likely to cook and eat.
Second, the early brain changes may affect taste centers, making food less palatable and thereby decrease appetite.
Third, early disease may have an effect on the satiety centers in the brain.
Exactly why men do not show similar changes in weight before disease onset is unclear, but may relate to changes in hormone levels with age.
Something to look forward to...I guess...? There are other ways I'd rather lose weight.

Just a link; you can read it if you need it.
Reducing Alzheimer's Wandering
The final few things are taken care of by the Alzheimer's Association Safe Return program. If you have not enrolled your loved one in this program, please look into it. It's inexpensive and someday might save a life.

Drug slows brain shrinkage
My dad's on this one. If the rate of degeneration he's undergoing is SLOW I hate to see what happens to those not on medicine.
The Alzheimer's drug Aricept not only improves memory and understanding in patients but appears to slow the characteristic shrinkage of the brain.....Magnetic resonance imaging or MRI images of the brains of 131 patients with mild cognitive impairment showed less shrinkage of the hippocampus, a structure key to memory function, in patients who got the drug compared to those who got a placebo.

Early steps to Alzheimer's
Memory failure is usually the very earliest sign of a pre-Alzheimer's condition, and a new study finds that "executive functions" -- concentration, decision-making and problem-solving -- may be the next neurological systems affected.
If someone with mild cognitive impairment starts having trouble staying on task, concentrating, multitasking, making decisions or paying attention to several things at once, that would mean they are progressing toward dementia.

I also want to comment on the President's veto of the stem cell bill. I'll be doing that later as a separate post.

Sunday, July 16, 2006

84 I become nameless

My mom took my dad to the senior center to try to get him enrolled in a program for those with dementia and the woman asked my dad a lot of questions. She ascertained that he knows he has one child which is a daughter but as far as that daughter's name...a blank stare.
I knew it was coming. I'm not hysterical about it. He knows when he sees me that I'm that daughter. That's what counts, right?
The anxiety medicine hasn't completely erased all his OCD. He still has no sense of proportion. Everything is equally important. It's like the boy who cried wolf--you just can't pay attention to every time he gasps or cries out because most of the time it's something insignificant. Perhaps not to him, I don't know. He can't explain himself anymore.
I had to climb to the top of Sleeping Giant to take pictures for a magazine article I'm writing. I was going to go today but it was supposed to be really hot so my mom said she'd go with me early on Saturday instead. My leg has been a lot better and I've been working out so I figured I could do the climb. I knew it wouldn't be the cakewalk it was when I was 19.
It was very difficult--the climb up and down took me 3 hours (3.2 miles total) and by the end I was stumbling, barely able to move. We saw a pair of deer and I took some pictures and then some rowdy people with dogs came along talking loudly. We asked them to be quiet and not scare the deer but they really didn't seem to care. My father just kept saying "shh" in a really loud voice and it was probably him who scared away the deer. He is the one who spotted the first deer and I saw the 2nd one. Boy are they well-camouflaged. Almost as good as copperheads (which we didn't see, but that doesn't mean they weren't there!).
A couple of times we saw butterflies which would have made his day but they didn't stick around, just cruised by, and he wouldn't move on, waiting for them to come back.
I had to keep stopping to rest and my dad would hover uncertainly. I told him repeatedly not to wait for me, just to go, but he didn't get it. Or he would meander far behind my mother and I, barely walking, picking at the skin on his hands and elbows. So our walk was a constant refrain of "come on" "don't pick" "stop picking" "don't wait for me" And of course "are we there yet?" Once we got "there" (the castle) then he had to go to the bathroom. And like a barely potty trained child, he had to go NOW. Well there's no bathrooms at the top and no privacy in the bushes so my parents headed down the mountain without me to get him to a bathroom. That's how he's been lately--must go NOW--he can't hold it at all, or maybe he doesn't understand the early signals of having to go. Combined with his professed ignorance of blowing massive farts, I wonder how long it will be before he's incontinent.
He tries so hard though, even though the things he says make no sense. When my parents dropped me off to stumble into my house, he thanked me (for what?) and said something about me having a good time. A good time!? I could barely walk into the house and climb in a very cold shower.

Tuesday, July 11, 2006

83 AD news

Some recent news on Alzheimer's:

Spinal Fluid Protein Could Predict Alzheimer's
Measuring levels of a protein in the cerebrospinal fluid of middle-aged adults at high genetic risk for
Alzheimer's disease may reveal early signs of disease development, U.S. researchers report....aging, plus the presence of a copy of a gene called apolipoprotein E*4 (APOE*4) are the two strongest known risk factors for Alzheimer's. People with APOE*4 develop clinical dementia about 10 to 15 years earlier than people without this particular allele.
Previous research had found that Alzheimer's-related plaques in the brain begin forming years before a person shows any symptoms of the disease.

Research Points to Alzheimer's Blood Test
Increased blood levels of specific forms of beta amyloid proteins -- the abnormal molecules that are found in the brains of people with Alzheimer's disease -- were associated with an increased incidence of that condition and other forms of dementia.

I wonder if the two tests are related...are they looking for the same thing but in 2 places--blood and spinal fluid? I wish I was more medical-educated.

New Clues to Neurological Diseases Discovered
Researchers have found that genetic abnormalities in molecules that regulate neuron growth may be at the root of Down syndrome and Alzheimer's disease.....(A) malfunction of a single gene disrupts the transport of neurotrophins and that restoring normal levels of a Trk receptor could reverse the death of neurons....The thought has always been that the problem in neurodegenerative diseases has been a lack of supply of neurotrophins. (I)t's not a supply problem, but it's actually receptors on the cell surface malfunctioning....This could become a new therapeutic target.

Could a Low-Carb Diet Slow Alzheimer's?
The thought of trying to alter my dad's diet at this point is pretty funny. He drinks the dregs of oily disgusting salad dressing as if it's healthy spring water, and then cuts the burn marks off beautiful roasted chicken and calls THAT "fat".
A low-calorie diet, particularly one that's low in carbohydrates, may reduce or even reverse the symptoms of Alzheimer's disease....(R)estricting carbs may help prevent Alzheimer's by boosting brain activity associated with increased longevity.

B vitamins don't prevent Alzheimer's
Using B vitamins to lower levels of the blood protein homocysteine does not ward off Alzheimer's disease....The findings come as a disappointment after previous work had suggested a link between Alzheimer's and elevated concentrations of the amino acid.
There is no short-term benefit of homocysteine lowering with B-vitamins on cognitive performance in healthy older people with high homocysteine...

You know, I read all these articles but I no longer have hope that any of these discoveries can help my dad. I can only hope they help someone else's dad.

Sunday, July 09, 2006

82 going downhill

I was only gone a few days and I'm shocked at how much my dad has gone downhill. I mean, I saw him on Sunday and then returned on Friday--not an unusual amount of time to go between visits with my parents.
My dad has almost entirely stopped talking.
I don't know if it's because he CAN'T talk or doesn't want to. I suspect the latter.
I called my parents a couple of times from Vegas and once my mom put my dad on the phone and it was like talking to the cat. I can't even remember what I was telling him--just that he didn't really respond. Did he even know it was me? At the end of the conversation I said something like "Okay, I'll see you in a few days" and he gave his standard response "here she is" and obviously started to hand the phone back to my mom and she said "Hang up, she said goodbye!" and then the phone hung up.
My mom said she thinks he's really gone downhill in the last month. He locked her out of the house twice and wouldn't let her back in, just stood in the dining room and looked at her through the window as she banged on the glass and yelled for him to unlock the door. I told her to hide a key outside. One time she had gone for a walk and the other time she just went to hang laundry. Who brings a housekey to hang out the clothes?
She is trying to get him into some kind of program at the Senior Center and she said it seems like the woman doesn't want to let him in, and from the questions she asked my mom, it's apparently because she doesn't think my dad really has AD. My mom said, "I'll tell her to call the doctor" and I said, "no, have her spend five minutes with Daddy and she won't doubt it." The problem is his age--no one believes someone as young as him can be so bad.
We stopped for dinner on the way home from the airport on Friday and I don't think my dad said anything. Yesterday we went to Red Lobster for my birthday lunch (happy birthday to me). I was over the house playing with Ace and singing with him (he likes to climb up onto my head and we howl together--it's silly and fun) and my dad got very upset, overreacting as usual, putting his hands over his ears and swearing. Then my mom couldn't get him to come outside and get into my car--he got sidetracked locking the door 350 times. He did tell me "happy new year". I said, "it's happy birthday, thank you." The next few times he said it I didn't correct him.
They have a new menu item at Red Lobster, a mega shrimp cocktail dinner. My dad LOVES shrimp cocktail. We were going to order him that and then my mom remembered that he had really liked the shrimp pasta he'd gotten there before so she ordered him that. When it came he wanted to know where his shrimp cocktail was and we said we got that instead and he was angry. He got passive-aggressive, cutting up the linguini violently and slamming his utensils around. Then he decided that my mom's shrimp scampi was the same as shrimp cocktail and he ate most of it on her, saying "this is what I like". I also gave him half of my mashed potatoes. I don't know why I go out to eat; I never finish any of my food.
For dessert I got the chocolate cake with ice cream to split with my dad. I know he likes that because I brought home half a piece a couple of months ago and brought it over on a Friday night and he ate most of it. He also ate most of this cake. My mom had some kind of banana cheesecake, yuck. But he didn't speak to the waitress at all (my mom asked for more napkins) and I don't remember him talking except to complain about getting the wrong shrimp and getting upset that the credit card was sticking out of the top of the black leather folder.
When we got back to my parents' house, he thanked me several times for lunch. Which my mom paid for, since it was my birthday. Sigh.

In possibly AD-related news, yesterday an 89 year old man from Wallingford ran over 27 (or 29 depending on the source) people in New London including that Ned Lamont guy who's running for political office. This is why I'm glad my dad stopped driving on his own.