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The final Verse
1 year ago
Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts
Sunday, November 23, 2014
Friday, October 24, 2014
My mom has cancer
I will never take down these pages as long as I believe that my dad's story helps others. He's been gone almost 7 years and I miss him every day, but I'm glad he's not here to see my mom so very ill.
Hug your parents and tell them you love them.
If you need to reach me, you can e-mail geverabert at either yahoo or gmail.
Thanks for reading.
--Bert
Saturday, March 01, 2014
"stand your ground" follow-up
To quickly recap, Mr Ronald Westbrook was wandering at night with his dog, lost, and went to the wrong house. The people called the police, but then also went outside and shot the old man, killing him.
Now the DA has decided that this sort of behavior is perfectly acceptable and no charges are to be filed against the cowardly young man who was afraid of an old man.
I know all too well that all Alzheimer's patients are not innocently befuddled forgetful angels. But in no article I've read has anyone suggested that Mr Westbrook was angry or threatening or in any way attacked his killer. In fact it seems that his only menace was lack of response.
The District Attorney's office says they will not pursue charges against Joe Hendrix in the 2013 shooting of Ronald Westbrook. D.A. Herbert "Buzz" Franklin sent a news release Friday, explaining the details surrounding the case that touched on the "stand your ground" laws.
This sets a terrible precedent. I am deeply saddened for Mr. Westbrook's family.
original article | screencap
Thursday, February 06, 2014
Look at Them Swim
This is the essay I submitted to Chicken Soup for the Dementia Soul. I did not hear back from them, and the book comes out on 4/22/2014, and you're supposed to hear back two months before. So here it is for your enjoyment, and you don't have to buy the book.
Look at Them Swim
Dementia is a terrible disease and as it progresses, most days are filled with incidents we’d rather forget. But every once in a while, there are brief moments of joy and laughter.
My dad had Alzheimer’s for four years, and his first symptoms were speech-related (aphasia). As the disease progressed, what he had to say became more and more random and often unintentionally hilarious.
Some people have said, “How could you laugh at your sick father?” Those people have never lived with someone who has dementia. You take the fun where you can get it.
His lack of connection to the real world sometimes made him adventurous. We’d take him out to eat and he’d look at the pictures on the menu.
“What do I eat here?” he would ask us, pointing. “Do I eat this? Does this one go with that one?”
“You like this one,” I’d show him. “Remember? We used to get it when we went on vacation in Plymouth every year.”
“Oh, the beach! I like it there.” And he’d be off, talking about the beach we visited every summer for thirty years. How we would walk around in the tidal pools at low tide looking for starfish and sea urchins and once in a while even a lobster.
Meanwhile the waitress is waiting, looking annoyed.
“So do you want to eat this?”
“Yes!”
“He has Alzheimer’s,” I’d explain, and order his food for him. It was always amazing how people who were impatient or angry with my father’s weirdness changed instantly when I said that, often going out of their way to make sure he had a good time (even if we were just at Home Depot buying some nails).
Once the food came, my father would look at it doubtfully. “I don’t think I like this,” he would complain.
“You do,” I would assure him. I never ever lied and made him eat something he hadn’t liked before.
“How do I eat it?” Sauces and side dishes confused him. “Does this go on here?”
I’d show him the “right” way and he’d eat some of the food, and then his face would change. “I remember this!”
He knew, you see, that he had Alzheimer’s. He didn’t ever seem to understand what it was, though. He called it “this thing in my head that’s killing me” and carried around a scrap of paper on which he had carefully written ALZHEIMERS in his precise block printing, that he could show people. Then he would display his Safe Return bracelet, and if I was there, he would point to me and say, “That one gave this to me” like it was a prize.
He knew he couldn’t remember. He knew he didn’t understand. And when he did remember, or understand, he would be so happy.
“We eat this at Plymouth!”
“Yes, we do. It’s good, isn’t it?”
And he would be happy, for a little while, and so would I.
I don’t know when he forgot who I was. My name left his head very early, along with all names. I was “that girl.”
He didn’t know who I was, but he knew he liked me. If he was out with my mom and they saw an SUV like mine, he would get all excited and point. “Is it that girl?” If he saw an overweight redheaded woman on TV he’d think it was me.
He was injured one night while I was visiting—he got in the middle of a fight between the cat and the dog—and the cat opened an artery on his hand. I used first aid to stem the bleeding until the paramedics arrived. When they did, and fixed him up, he pointed to me. “This girl, she helped me. She saved me.”
When I left that night, he followed me out to the car and very shyly asked me for my phone number. “In case I get in trouble again.”
I wrote my home, cell, and work numbers down.
He stared at the paper and then at me. “I know these numbers,” he said slowly. “I know YOU.”
“Yes, you do,” I said gently.
As his disease, and his aphasia, progressed, conversation became more difficult. I used to call it Alzheimer’s Mad-Libs.
I called looking for my mom and my dad answered.
“Bob,” I said, “Where’s Ann?” Dad and Mom were concepts long gone.
“Oh,” he replied. After a long time, he said, “She took the thing to the place, for the, you know.”
“Tell her I called.” I tried fruitlessly to explain who I was.
“Okay.”
When my mom got home, of course he said, “They called.” She had no idea who.
Meanwhile I’m at home playing fill-in-the-blank. She took the dog to the vet for shots? The car to the shop for repairs? Grandma to the doctor for her eyes?
My mom got Caller ID after that.
We had a dachshund and a tuxedo cat, raised together as best friends, who had both died not long before his diagnosis. I’d bought them a Siamese cat, but my dad missed the dog. When he took walks with my mom, he would approach every dog and think it was his.
My mom did not want to start over with a puppy, not while dealing with early-onset dementia (Dad was 63 at his diagnosis). I found a nice older rescue dachshund in Massachusetts and arranged to go pick him up. The day before, my mom bought a leash, collar, bowls, and toys.
My dad piled everything by the door. “Take it all back,” he said.
“Don’t you want a dog? You miss the dog.”
“No. Take it back.”
We decided to get the dog anyway.
The three of us drove 90 minutes to the rescue place. We gave a donation and loaded me and the dog into the back seat. My dad kept turning around to look at the dog on the way home.
“Can I pet him?”
“Yes, you can pet him.”
Nothing about taking the dog back or not wanting a dog, of course.
He’d pet the dog, stare at him, stare at me. Finally he said, “That’s a nice dog you have there.”
“That’s your dog.”
“My dog?” His whole face lit up. “My dog?” He was like a child at Christmas.
When we stopped to walk the dog at a rest stop, my dad couldn’t stop petting him.
“Do you want to sit in the back seat with him?”
“Oh yes.”
All the way home he hugged that little dachshund. When he was dying a year later, I brought his dog to him. He had been unresponsive for days, but he moved his hand and put it on the dog’s back and kept it there until I took the dachshund home.
My favorite memory of him is when he was looking out the window at Mom’s flower garden, where beautiful butterflies fluttered among the colorful blooms. He pointed and said, “look at them swim!” because he had forgotten the word “fly.” He loved butterflies and I dearly hope that wherever he is, he is swimming with them right now, and that he is glad that when we remember him, we laugh.
Look at Them Swim
Dementia is a terrible disease and as it progresses, most days are filled with incidents we’d rather forget. But every once in a while, there are brief moments of joy and laughter.
My dad had Alzheimer’s for four years, and his first symptoms were speech-related (aphasia). As the disease progressed, what he had to say became more and more random and often unintentionally hilarious.
Some people have said, “How could you laugh at your sick father?” Those people have never lived with someone who has dementia. You take the fun where you can get it.
His lack of connection to the real world sometimes made him adventurous. We’d take him out to eat and he’d look at the pictures on the menu.
“What do I eat here?” he would ask us, pointing. “Do I eat this? Does this one go with that one?”
“You like this one,” I’d show him. “Remember? We used to get it when we went on vacation in Plymouth every year.”
“Oh, the beach! I like it there.” And he’d be off, talking about the beach we visited every summer for thirty years. How we would walk around in the tidal pools at low tide looking for starfish and sea urchins and once in a while even a lobster.
Meanwhile the waitress is waiting, looking annoyed.
“So do you want to eat this?”
“Yes!”
“He has Alzheimer’s,” I’d explain, and order his food for him. It was always amazing how people who were impatient or angry with my father’s weirdness changed instantly when I said that, often going out of their way to make sure he had a good time (even if we were just at Home Depot buying some nails).
Once the food came, my father would look at it doubtfully. “I don’t think I like this,” he would complain.
“You do,” I would assure him. I never ever lied and made him eat something he hadn’t liked before.
“How do I eat it?” Sauces and side dishes confused him. “Does this go on here?”
I’d show him the “right” way and he’d eat some of the food, and then his face would change. “I remember this!”
He knew, you see, that he had Alzheimer’s. He didn’t ever seem to understand what it was, though. He called it “this thing in my head that’s killing me” and carried around a scrap of paper on which he had carefully written ALZHEIMERS in his precise block printing, that he could show people. Then he would display his Safe Return bracelet, and if I was there, he would point to me and say, “That one gave this to me” like it was a prize.
He knew he couldn’t remember. He knew he didn’t understand. And when he did remember, or understand, he would be so happy.
“We eat this at Plymouth!”
“Yes, we do. It’s good, isn’t it?”
And he would be happy, for a little while, and so would I.
I don’t know when he forgot who I was. My name left his head very early, along with all names. I was “that girl.”
He didn’t know who I was, but he knew he liked me. If he was out with my mom and they saw an SUV like mine, he would get all excited and point. “Is it that girl?” If he saw an overweight redheaded woman on TV he’d think it was me.
He was injured one night while I was visiting—he got in the middle of a fight between the cat and the dog—and the cat opened an artery on his hand. I used first aid to stem the bleeding until the paramedics arrived. When they did, and fixed him up, he pointed to me. “This girl, she helped me. She saved me.”
When I left that night, he followed me out to the car and very shyly asked me for my phone number. “In case I get in trouble again.”
I wrote my home, cell, and work numbers down.
He stared at the paper and then at me. “I know these numbers,” he said slowly. “I know YOU.”
“Yes, you do,” I said gently.
As his disease, and his aphasia, progressed, conversation became more difficult. I used to call it Alzheimer’s Mad-Libs.
I called looking for my mom and my dad answered.
“Bob,” I said, “Where’s Ann?” Dad and Mom were concepts long gone.
“Oh,” he replied. After a long time, he said, “She took the thing to the place, for the, you know.”
“Tell her I called.” I tried fruitlessly to explain who I was.
“Okay.”
When my mom got home, of course he said, “They called.” She had no idea who.
Meanwhile I’m at home playing fill-in-the-blank. She took the dog to the vet for shots? The car to the shop for repairs? Grandma to the doctor for her eyes?
My mom got Caller ID after that.
We had a dachshund and a tuxedo cat, raised together as best friends, who had both died not long before his diagnosis. I’d bought them a Siamese cat, but my dad missed the dog. When he took walks with my mom, he would approach every dog and think it was his.
My mom did not want to start over with a puppy, not while dealing with early-onset dementia (Dad was 63 at his diagnosis). I found a nice older rescue dachshund in Massachusetts and arranged to go pick him up. The day before, my mom bought a leash, collar, bowls, and toys.
My dad piled everything by the door. “Take it all back,” he said.
“Don’t you want a dog? You miss the dog.”
“No. Take it back.”
We decided to get the dog anyway.
The three of us drove 90 minutes to the rescue place. We gave a donation and loaded me and the dog into the back seat. My dad kept turning around to look at the dog on the way home.
“Can I pet him?”
“Yes, you can pet him.”
Nothing about taking the dog back or not wanting a dog, of course.
He’d pet the dog, stare at him, stare at me. Finally he said, “That’s a nice dog you have there.”
“That’s your dog.”
“My dog?” His whole face lit up. “My dog?” He was like a child at Christmas.
When we stopped to walk the dog at a rest stop, my dad couldn’t stop petting him.
“Do you want to sit in the back seat with him?”
“Oh yes.”
All the way home he hugged that little dachshund. When he was dying a year later, I brought his dog to him. He had been unresponsive for days, but he moved his hand and put it on the dog’s back and kept it there until I took the dachshund home.
My favorite memory of him is when he was looking out the window at Mom’s flower garden, where beautiful butterflies fluttered among the colorful blooms. He pointed and said, “look at them swim!” because he had forgotten the word “fly.” He loved butterflies and I dearly hope that wherever he is, he is swimming with them right now, and that he is glad that when we remember him, we laugh.
Monday, February 03, 2014
dementia patient hit by train
It's really hard to judge how much people with dementia retain. The last time I saw my dad before his catastrophic head injury, he surprised me by hugging me and saying he loved me. Did he know who I was that day, or was he just happy "that girl who helps me" came to visit him at the nursing home? I'd like to think it's the former. In that situation, we all hope there was a spark of recognition there, just for that moment.
We'll never know what was in this dementia patient's mind when he managed to escape his nursing home and walk into a moving train on Saturday night. The unidentified man, in his 70s, was not even reported missing by the nursing home until an hour after he had been hit by the train. Who knows how long he was wandering outside in Canada in February.
Police said the train engineer sounded the warning horn, but the man continued to walk toward the train....(T)he man was conscious, breathing and talking when first responders arrived.
The man is now in the hospital with undetermined head injuries.
I'm trying to envision this. Was he walking down the tracks, directly at the train? Was he walking perpendicular to the train, toward the side of it? Another article says he was walking down the tracks. That train engineer must have stood on the brakes not to have completely taken the old guy out.
The nursing home doesn't seem to be too broken up over one of their dementia patients, who should have been in a locked, alarmed ward, wandering off and almost getting killed by a train. There's no mention of any family, unless the "unidentified" part means the family hasn't been notified yet. The second article I found was only a few hours old and still says that.
I don't understand how, in the technologically advanced 21st century, how an old man with an addled mind managed to escape. How difficult would it be to install, at every exit, RFID readers that also required a code. If a patient learns the code, she still hasn't got the card, and if she's stolen a card, she (hopefully) doesn't have the code. Employee's card is missing, immediately remove that card's number from access.
 |
| RFID chip and grain of rice |
The embedded chip is the size of a grain of rice and there is no reason that it couldn't be embedded in a person. They aren't tracking chips (not yet anyway) but they would work for doors. I know Bible lovers think RFID chips are the mark of the devil but they need to get over themselves. The first time a child or a mentally handicapped person or a dementia patient is found because of a microchip, their tune will change. One would hope.
Screen print of first article. Screen print of second article. RFID chip
Wednesday, December 11, 2013
Vote for me!
If I win I will donate the money to Alzheimer's research. Thank you. You can vote once per day with Twitter and with Facebook.
 Healthline |
“Stand your ground” against dementia patients!
 |
| Mr Ronald Westbrook |
Mr. Westbrook wandered from his home in the middle of a cold night, dressed inappropriately for the weather, with his two dogs. At 2:30 a.m. a police officer questioned him but apparently was satisfied that the man lived in the area and was walking his dogs.
About 90 minutes later, 34-year-old Joe Hendrix heard a knock on his door. Perceiving a threat, he called the police and then went outside to confront the intruder—an elderly man wearing thin clothing, carrying some mail, with two dogs. Hendrix decided the confused senior citizen was “coming right for him” (as they say on South Park as a defense against shooting anything) and shot him four times in the chest with a .40 caliber handgun.
“Under Georgia law, people are not required to try retreating from a potential conflict before opening fire to defend themselves from serious imminent harm," said Russell Gabriel, director of the Criminal Defense Clinic at the University of Georgia. State law allows people to use lethal force to stop someone from forcibly entering a home if those inside reasonably fear they are going to be attacked. Deadly force can even be used to stop someone from trying to forcibly enter a home to commit a felony.”
My best friend grew up in the boondocks of Pennsylvania, a place full of gun-toting rednecks from which she escaped as soon as she graduated from high school. She was taught how to use a gun when she was seven years old, and to respect a gun, and when not to shoot a gun. When I told her about this story she was appalled on many levels. I’m not a “no one should have guns” person, but there should be rules…and one of the rules shouldn’t be “it’s coming right for us” so let’s shoot it, straight out of South Park. She said if everyone was properly taught to use and respect firearms as children, this sort of thing wouldn’t happen.
Long-time readers know that my dad "escaped" twice from my mom. Once he was angry, once he thought he knew where he was going but got confused and lost. Both times he was returned to us unharmed; we were probably more frightened than he was. I can't imagine the phone call to his poor wife, who hadn't realized he was missing. "Ma'am, your husband left your house and was shot to death. Sorry about that."
Would Mr. Westbrook have died a horrible death like my dad? Perhaps. Or perhaps not. Even if that was the case, he shouldn't have been shot. He was probably scared and or confused. One article said he used to live there at the Hendrix residence, or thought he did. Maybe he thought he was home. Then a strange man came outside, shouting things at him that his poor old brain couldn't process, and instead of helping him or welcoming him, the man from inside the house shot the old man to death.
His wife was a nurse, well-qualified to be caring for him at home. She had the doors alarmed. There's no mention I can find of how he defeated the door alarms and got out of the house. But there didn't seem to be a reason for him to be in a nursing home, or that his wife could no longer handle his care.
This is just heartbreaking, and yet the news cycle was all about some guy from a movie about driving fast dying in a car accident while driving fast.
(I read several articles about this, some with varying details. I picked the best one to showcase here.)
enlarge article here
Original URL and photo source
FOLLOW-UP
Stroke damage = vascular dementia
An update on Alzheimer’s Aunt: after many delays, she finally went to a throat specialist. He found that her throat was 60% closed (if I understand it correctly; this is 3d hand information filtered through her) and she has one or more throat polyps. He “opened” her throat while she was under anesthesia and then she was required to take some “suspension” drug for 30 days. Turns out her insurance didn’t pay for that drug and it was $300 so someone made the decision simply not to get it for her.
Fast forward two weeks to Thanksgiving at my mom’s house. I was sick that whole week and my mom was going to move the turkey dinner to Sunday, but Alzheimer’s Aunt decided she was coming so we couldn’t cancel. I didn’t feel like being with people or eating, but as a dutiful daughter I went to see my mom and my cousin (and my aunt, I guess). I didn’t much feel like eating—I had been sick for 5 days at that point, sleeping about 20 hours a day due to intense pain in my head (probably, looking back, I had a sinus infection, but between the holiday and the weekend there was no way to get to a doctor and on Monday I was getting better already). I took a very small amount of food just to be polite.
Alzheimer’s Aunt loaded up her plate with everything. My mom had accidently bought a six pack of caffeine-free Pepsi instead of caffeine-free Diet Pepsi and since Alzheimer’s Aunt is a Pepsi fanatic (addict) my mom offered it to her.
I had finished about half my meager plate when Aunt started to hiccup. I pushed the plate away and walked into the living room and laid on the couch. When someone asked why, I said, “I don’t want to be trampled” meaning by her when she starts to vomit and that was taken as a joke.
Did Alzheimer’s Aunt stop eating when she started hiccupping? No of course not. She kept shoveling food into her mouth, just like the time with the donut.
I’m going to do an aside here. If, as part of his Alzheimer’s, my dad had started to choke and “spit up” when he ate, and he had a clear warning sign such as hiccups, there is no way I would allow him to keep eating or to stay at the table once the warning bell commenced. He would be immediately told, “Bob, go into the bathroom.” If he didn’t go, he’d be led there. Of course, my cousins would say that’s a perfect example of me “being mean” to my dad, while I see it as an example of taking care of someone who can’t take care of himself.
Finally the people remaining at the table persuaded her to get up. Instead of going into the bathroom, she went the other way, into the kitchen. Meaning to get to the bathroom she would have to then go through the crowded dining room. Of course, while in the kitchen, it started. She forced her way through the dining room, spewing and gagging, into the bathroom.
This happened at least 4 times. (I went to sleep on the couch.) I don’t know how much of a mess she made in my mom’s bathroom, but last time she left it there for someone else to clean up (actually I cleaned it and told my mom after).
I was invited back to the table for dessert but between being sick and hearing puking, I declined. My cousin commented to her mother, “I noticed that you get sick when you drink soda or eat bread. The other night you drank water and didn’t eat bread and you were okay.” Alzheimer’s Aunt’s instant response: “I didn’t eat bread.” “You were eating stuffing, that’s bread, and you drank several cans of Pepsi.” “I didn’t eat bread.”
Sigh.
I wonder if, 2 weeks before, if she had been giving the prescribed drug, if she would not have been “spitting up” all over the place on Thanksgiving. I can only assume the procedure failed, whether due to the lack of the drug or some other reason.
Aunt was talking about the throat procedure. She said, “I thought I had throat cancer all this time!” I was dumbfounded. If I thought I had cancer, I wouldn’t wait TWO YEARS and LIE to my doctor about symptoms. I wouldn’t even wait two weeks, not after I saw my friend lose her mom in 13 days from cancer—less than two weeks from diagnosis to death last year. Seemingly fine at Thanksgiving, dead by Christmas.
Since Thanksgiving, there has been another bout of “go check on her, she’s dead” wherein it was found that she had left her traditional phone off the hook and turned off her cell phone. My cousin said, “she can’t understand that she needs to hang up the phone because she lost so much comprehension due to the strokes.” I said, “Yes, that’s vascular dementia.” “No, my mother doesn’t have dementia! She’s not like your dad.” (well that much is true) Well, according to this site and many others, “Stroke, small vessel disease, or a mixture of the two can cause vascular dementia.” That seems pretty straightforward to me.
In other Alzheimer’s Aunt news, one of her out-of-state children has decided to move back into the hoarded house and get it fit for habitation. Then she is going to give up her apartment (she’s been there what, a month?) and move back in with her child and child-in-law as caregivers. The house has been about 90% cleaned out (3 overflowing 25-yard dumpsters of trash) but there’s still a whole room of things she “has to have” and of course the place is filthy beyond imagining, smells horrible, and needs pretty much everything done—floors refinished/replaced, bathroom remodeled downstairs for her use, everything else scrubbed and/or painted and/or replaced. Good luck to the two of them moving in there. I wouldn’t live there even for free like they will be.
(I am going to continue calling her Alzheimer’s Aunt because it has a nice ring and Dementia Aunt is ugly. I know now she doesn’t have Alzheimer’s, of course.)
image source
Tuesday, November 26, 2013
5 years
Five years ago today, my dad died. He was in one of my dreams the other night and I got to hug him. It's taken a long time to feel really okay about all this.
(revision: I wrote this when I was terribly ill, which accounts for the fact that it's actually been SIX years since he died. Leaving it as-is.)
(revision: I wrote this when I was terribly ill, which accounts for the fact that it's actually been SIX years since he died. Leaving it as-is.)
Sunday, October 06, 2013
Chicken Soup for the Soul; Living with Alzheimer's and other Dementias
I just submitted a story about my dad to the new Chicken Soup for the Soul book, which is dementia/Alzheimer's themed. I'd like it to be in the book, of course... but if it doesn't make it, I'll post it here. Wish me luck.
Monday, September 09, 2013
Encouraging new treatment for dementia is emerging
I'll let the first paragraph of the article speak for itself:
The first experimental drug to boost brain synapses lost in Alzheimer’s disease has been developed by researchers at Sanford-Burnham. The drug, called NitroMemantine, combines two FDA-approved medicines to stop the destructive cascade of changes in the brain that destroys the connections between neurons, leading to memory loss and cognitive decline.
To me, that means that they shouldn't have to get FDA approval, right? This could be an off-label usage? I'm trying to understand how the drugs are being combined. I'm thinking of PhenFen, that diet drug that was two other drugs combined. (And it ended up killing people, didn't it? Maybe that's a bad example...)
The decade-long study...shows that NitroMemantine can restore synapses, representing the connections between nerve cells (neurons) that have been lost during the progression of Alzheimer’s in the brain.
That's A LOT to promise. And they aren't done promising yet. They are abandoing the old method of looking at the "amyloid beta plaques and neurofibrillary tangles" (what the drug my dad tested was looking at) in favor of something different.
To try to dumb down the science in the article a bit, the researchers found that the plaques didn't harm the neurons directly, but they did cause an overabundance of a chemical (glutamate) to be released, and that overabundance is what harmed the neurons. If I understand it correctly, it seems to burn out the "locks" (receptors) on the neurons that glutamate is the "key" to. A drug called Metamine can target those receptors, but it turns out that an overdose of glutamate also causes the receptors to repel the Metamine, meaning it's not as effective as it should be. The researchers also discovered that part of the nitroglycerine molecule (the heart drug) can also attach to that receptor. Working together, the piece of nitro can allow the metamine to bond to the receptor and keep it from burning out.
That would be good enough, to say that it would stop dementia in its tracks. Have your loved one with a bit of impairment, maybe you have to drive him around or make a picture menu for the remote controls of the house, but better than the slow slide into oblivion that dementia offers now, right?
But wait, there's more.
By shutting down hyperactive eNMDA receptors on diseased neurons, NitroMemantine restores synapses between those neurons. “We show in this paper that memantine’s ability to protect synapses is limited,” (Stuart A) Lipton (MD, PhD) said, “but NitroMemantine brings the number of synapses all the way back to normal within a few months of treatment in mouse models of Alzheimer’s disease. In fact, the new drug really starts to work within hours.”
Yes, it RESTORE NEURONS TO NORMAL. In mice for now.
Screenprint of original article
Wednesday, May 08, 2013
Stick N Find Bluetooth Location device
I just found this product through a post on, of all places, the I Can Has Cheezburger (LOL cats) site.
If my dad was still alive and at home, I'd be Fry from Futurama: shut up and take my money.
The battery lasts for a YEAR and it's just a simple watch battery. They are 2 for $50 and come in many colors. And it's a one-time fee (except for the batteries), no monthly upkeep charges.
I've talked about GPS shoes and watches and things before, but this is very versatile. It just doesn't have a great range. For what it is, the price isn't outrageous. The biggest hurdle may be the smart phone. I only got an Android phone a few weeks ago, and there is no app for any other operating system except Android and i-phone.
You can use the app to make the sticker flash or buzz (if your keys are lost in the dark).
You can create a "virtual leash" which tells you if the sticker gets too far away from your phone. This is for pets. Of course if you aren't at home and your pet gets out of your house, that isn't very useful.
The same company puts out a slightly bigger device called a BluTracker that has a range of half a mile and a battery life of 2 months (rechargeable). The pictures it looks to be about the size of a package of dental floss. It has the same features as the sticker, plus a little more. It can be pre-ordered for $70.
Note: This is NOT a paid advertisement, just a product I found that I think would be useful to the Alzheimer's community.
Thursday, January 31, 2013
click to give $10,000 to Alzheimer's
I just got this message on Facebook, from Max Wallack:
I am a 16 year old sophomore at
Boston University who is dedicating his life to help Alzheimer’s
patients and their caregivers. In 2008, I founded PuzzlesToRemember,
which, by now, has distributed over 19,300 puzzles to Alzheimer’s
facilities around the world. I also volunteer 20 hours a week in an
Alzheimer’s research lab.
I recently learned that I am the recipient of a $1000 grant from KidsWhoGive, which is a philanthropic program run by Farm Rich Products. I will be donating these funds to the Molecular Psychiatry and Aging Lab at BUSM.
Donating consumer goods like puzzles is helpful, but the knowledge created from research can have a much wider and longer lasting impact on society. There are 5.8 Alzheimer's patients in this country alone, with a new patient being diagnosed every 58 seconds.
I recently learned that KidsWhoGive having a “run off” competition between the nine students they have chosen throughout 2012. These students are being voted on by the general public. The winner will receive $10,000 for their “cause” I would really like the opportunity to provide $10,000 for research at Boston University Alzheimer’s Disease Center.
Please vote here every day until Feb 5 and help me bring this money to research. Just click on the word “vote”
http://kidswhogive.com/vote-on-entries/entry/?submissionId=164
This is a wonderful opportunity for people to donate for Alzheimer’s research without it costing them anything. Please share this information with your colleagues, post on your facebook page, your blog and publicize anywhere else in order to get as many votes as possible. It could make all the difference!
I recently learned that I am the recipient of a $1000 grant from KidsWhoGive, which is a philanthropic program run by Farm Rich Products. I will be donating these funds to the Molecular Psychiatry and Aging Lab at BUSM.
Donating consumer goods like puzzles is helpful, but the knowledge created from research can have a much wider and longer lasting impact on society. There are 5.8 Alzheimer's patients in this country alone, with a new patient being diagnosed every 58 seconds.
I recently learned that KidsWhoGive having a “run off” competition between the nine students they have chosen throughout 2012. These students are being voted on by the general public. The winner will receive $10,000 for their “cause” I would really like the opportunity to provide $10,000 for research at Boston University Alzheimer’s Disease Center.
Please vote here every day until Feb 5 and help me bring this money to research. Just click on the word “vote”
http://kidswhogive.com/vote-on-entries/entry/?submissionId=164
This is a wonderful opportunity for people to donate for Alzheimer’s research without it costing them anything. Please share this information with your colleagues, post on your facebook page, your blog and publicize anywhere else in order to get as many votes as possible. It could make all the difference!
Wednesday, July 25, 2012
Alzheimer's song
Someone sent me this video of a song about Alzheimer's.
Hi Bert, I saw your 'Alzheimer's Dad' site. I'm a musician &; we
recently completed an Alzheimer's-themed Music Video in Oregon. It's
called 'The Forgotten Man' & is dedicated to my grandparents, Stan
& Alma & others afflicted with the disease. Stan became 'The
Forgotten Man' once Alzheimer's took hold of his wife. If this video
& song can serve a purpose for anyone, please feel free to post or
share. The link & lyrics are below. Thank-you for your time,
Pennan. (sorry for the long lyrics...)
'The Forgotten Man' by Pennan Brae
Lyrics:
It’s another rainy night
In this cold shore-lined town
Water beads down my window
Dies without a sound
Leaves fly through the sky
Trees dance back and forth
Winds announce their presence
Howling from the North
Sit here silently
Watch the scene unfold
Grown man weeps utterly
Can’t believe what he’s told
His girl of fifty years
Can’t recall his name
Eyes the storm outside
Feels the anger feels the pain
If you don’t mind
Just sit low
Tell you a story
You’ll want to know
‘Bout the old man
Whose love forgot about him
He was an old man
He didn’t understand
What happened to the woman
Whose life he gave
What happened to the woman
Who forgot his name
Thunder softly speaks Past the lightning of the sky
Sunshine rays stray slowly in
Once clouds take heed and die
Hurting tears always fall
Past the strike of the heart
Tears of joy overcome
As the darkness departs
Sit here with hands in lap
Tears flow from his eyes
Want to give him all my help
Just a boy am I
He’s seen the world at war Times that caused him strife
His soul is hit again
He loses the love of his life
I’m sorry man but I don’t know what to do
I wish that I did ‘cause I feel bad for you
Though I see not the years
Of wisdom that you do
Reunited you will be
Forever in your youth
Monday, December 19, 2011
The Last Time
This morning I was thinking about two different friends of mine, both facing losing their moms to cancer. At least they get this holiday season with their moms, and they know it's the last one, is the direction my thoughts went, and I started composing some sort of holiday blog post in the back of my mind.
And when I got home from driving and musing, and logged onto Facebook, I saw to my dismay that one friend's mom had succumbed to her cancer only 2 weeks after her diagnosis. Last year was their last holiday together and they didn't know it. Her mom was healthy and fine in mid-November (or thought she was).
You don't know when it will be the last time. The last time you see someone, talk to them, celebrate a holiday, hoist a pint, laugh or cry or cringe at a movie together. It is worse when a healthy person gets taken in an accident of course, as there is no warning, but as my friend just found out to her sorrow, a mom can be fine on Thanksgiving and dead of cancer by Christmas.
When my dad got diagnosed, the doctors estimated, based on his age and how far his Alzheimer's had progressed, that he would live approximately 11 years. How GOOD those years might have been, they didn't say. Just that he should have made it to about 75 years old. So at that last Christmas, the one we didn't know was the last, in 2006, we thought we had 8 or 9 more years, when in truth it was less than a year.
Ironically, every year my mom thinks it's her mother's last Christmas (she's 93 now) and every year Grandma keeps going like the Energizer bunny. We're almost numb to thinking about her not being here anymore, to the point that when it does happen, we're going to be in total shock.
I guess we all know somewhere deep inside that anyone and anything can be taken from us without warning. And maybe we should live like that, never going away mad or holding a grudge. Always kissing our loved ones goodbye and telling them they are loved. But we don't. We get angry. We slam doors. We leave without saying goodbye. Everyone would like to think they are immortal and so are all their loved ones.
I believe that as long as someone remembers us, our memory is immortal, and our souls hang out in the Elsewhere Bar and do whatever needs to be done in the next life. But Alzheimer's and other forms of dementia can steal away even that breath of life, taking those memories forever.
I can't offer a solution. I'm not a god or a doctor, just a person who has lost so much, who grieves to see her friends in similar sorrow.
Love who you have while you have them, and remember them fondly every day after that.
And when I got home from driving and musing, and logged onto Facebook, I saw to my dismay that one friend's mom had succumbed to her cancer only 2 weeks after her diagnosis. Last year was their last holiday together and they didn't know it. Her mom was healthy and fine in mid-November (or thought she was).
You don't know when it will be the last time. The last time you see someone, talk to them, celebrate a holiday, hoist a pint, laugh or cry or cringe at a movie together. It is worse when a healthy person gets taken in an accident of course, as there is no warning, but as my friend just found out to her sorrow, a mom can be fine on Thanksgiving and dead of cancer by Christmas.
When my dad got diagnosed, the doctors estimated, based on his age and how far his Alzheimer's had progressed, that he would live approximately 11 years. How GOOD those years might have been, they didn't say. Just that he should have made it to about 75 years old. So at that last Christmas, the one we didn't know was the last, in 2006, we thought we had 8 or 9 more years, when in truth it was less than a year.
Ironically, every year my mom thinks it's her mother's last Christmas (she's 93 now) and every year Grandma keeps going like the Energizer bunny. We're almost numb to thinking about her not being here anymore, to the point that when it does happen, we're going to be in total shock.
I guess we all know somewhere deep inside that anyone and anything can be taken from us without warning. And maybe we should live like that, never going away mad or holding a grudge. Always kissing our loved ones goodbye and telling them they are loved. But we don't. We get angry. We slam doors. We leave without saying goodbye. Everyone would like to think they are immortal and so are all their loved ones.
I can't offer a solution. I'm not a god or a doctor, just a person who has lost so much, who grieves to see her friends in similar sorrow.
Love who you have while you have them, and remember them fondly every day after that.
Tuesday, June 21, 2011
The flowers are few and far between
What a long strange trip it's been, and it will never be over, until they find a cure (or cures) or at least a way to halt it until death comes from another source.
My heart goes out to everyone whose families are still traveling this horrible bumpy road. The flowers are few and far between, but they are there, little tiny bits of brightness and laughter and love.
I hope this blog has been, and continues to be, a flower for those walking the road of dementia.
Happy summer solstice. May the sun illuminate your flowers.
(image source)
Tuesday, June 14, 2011
Father's Day without a Dad
Once upon a time, I had a dad. Just like the title of this blog. And yes, when I started the blog, my dad was still physically with me. But the second someone is diagnosed with dementia, it's as if they start very slowly moving down a tunnel away from you. I knew nothing about Alzheimer's at that point, but I knew enough to steal the lyrics from a Jane's Addiction song to title my blog. "I turned around and found my daddy gone. He was the one who made me what I am today. It's up to me now, my daddy has gone away." (video is NSFW in lyrics or images)
Father's Day has ceased to be a holiday for me. I think it stopped in 2004, the last time we really CELEBRATED. Because the very next day, my dad got diagnosed and this blog came into existence. So to me, Father's Day isn't about a happy time with my dad. It's more like the LAST time with my dad, if it makes any sense.
We are a fatherless and grandfatherless family. My dad died in 2007. My husband's dad died in 1972 when he was just a wee pup. (He never had a dad--I shouldn't whine, because I had one for 39 years.) My mom's dad, my beloved grandpa, died in 1987 and his dad died in 1979. My grandma's still alive, but her dad died before I was born. My dad's dad died before I was born. One of my husband's grandpas died when he was a teenager; the other was never in the picture (there was a step-granddad there, but he died in the 1990s). So, in any direction you look from me, no dads. Only my sister-in-law's fiance has a dad (but her brother's fiance lost hers when she was a teenager). I guess we all have to adopt Rudy's father!
So basically Father's Day is a non-holiday. We don't discuss it. We don't celebrate it. It's as if it's a holiday from another faith--like Ramadan or Chanukah, we know it's happening for other people, but not for us. I'm having a little gathering this weekend and I was astonished that some people can't come because of Father's Day. It's that far off my radar.
I'm sure other people choose to use Father's Day (and Mother's Day) as a day to memorialize their loved ones with dementia, past and present. But for my family, we lived it, and we like to just let it lie most of the time. If the subject comes up naturally, we talk about my father, but we never force it.
Love and memory should never be forced.
Happy Father's Day to all those who celebrate, and a nod to those, like me, who have chosen to leave it behind.
Father's Day has ceased to be a holiday for me. I think it stopped in 2004, the last time we really CELEBRATED. Because the very next day, my dad got diagnosed and this blog came into existence. So to me, Father's Day isn't about a happy time with my dad. It's more like the LAST time with my dad, if it makes any sense.
We are a fatherless and grandfatherless family. My dad died in 2007. My husband's dad died in 1972 when he was just a wee pup. (He never had a dad--I shouldn't whine, because I had one for 39 years.) My mom's dad, my beloved grandpa, died in 1987 and his dad died in 1979. My grandma's still alive, but her dad died before I was born. My dad's dad died before I was born. One of my husband's grandpas died when he was a teenager; the other was never in the picture (there was a step-granddad there, but he died in the 1990s). So, in any direction you look from me, no dads. Only my sister-in-law's fiance has a dad (but her brother's fiance lost hers when she was a teenager). I guess we all have to adopt Rudy's father!
So basically Father's Day is a non-holiday. We don't discuss it. We don't celebrate it. It's as if it's a holiday from another faith--like Ramadan or Chanukah, we know it's happening for other people, but not for us. I'm having a little gathering this weekend and I was astonished that some people can't come because of Father's Day. It's that far off my radar.
I'm sure other people choose to use Father's Day (and Mother's Day) as a day to memorialize their loved ones with dementia, past and present. But for my family, we lived it, and we like to just let it lie most of the time. If the subject comes up naturally, we talk about my father, but we never force it.
Love and memory should never be forced.
Happy Father's Day to all those who celebrate, and a nod to those, like me, who have chosen to leave it behind.
Thursday, June 09, 2011
Another award...
Just won another award for this blog. Except that they think I'm a guy for some reason.
Had a Dad: The impetus of this blog was simple: to provide a space for a son whose father was struggling with Alzheimer's. His father has recently passed on, yet he continues to vent here.
Wednesday, June 08, 2011
$270 raised for Alzheimer's Association
The final tally of how much I raised with my tag sale (and related donations) is $270. That includes a $50 check a guy brought, and a few other cash-in-the-jar donations. I was hoping for twice that. But it's better than nothing. I ended up NOT taking the money I spent on the ad back, because the total was so low, so you can throw in my $30 worth of ads as part of my donation!
Friday, June 03, 2011
Slow news day
You know it is a slow news day when they put ME on the front page of the paper, above the fold.
The electronic link contains basically the same text as the print article, with a different title:
Blog chronicled woman's dad's experience with Alzheimer's
Posted: Thursday, June 2, 2011 10:17 pm
Russell Blair
WALLINGFORD - Search "Alzheimer's blog" on Google and the No. 1 result, above the Mayo Clinic, belongs to a local woman who chronicled the experience from when her father was diagnosed until his death 1,253 days later.
Roberta Piedmont's blog "Had a dad," began as a way to express what she was going through, dealing with her father's disease, but it quickly grew in popularity and became a source of support for others.
"I started it the day my dad was diagnosed," Piedmont said. "I wanted it to be a record of what happened - a journal."
Eventually more and more people started reading it and reaching out to her. Piedmont said she began to see the blog as an important tool for helping others going through the same thing realize they are not alone
"I wrote about the suckiest things," Piedmont said. "I wrote about embarrassing, terrible and awful things. Other people think they're alone, but they're not."
Piedmont's father, Bob Rizza, worked for more than 30 years in the car business in Meriden and Wallingford before he had to retire at age 62 due to the beginning stages of the disease. He was diagnosed a year later, on June 21, 2004, and died on Nov. 26, 2007.
Christina Bowers, a friend of Piedmont's whose mother suffered from dementia, said that Piedmont always talked about the blog. "She's a writer at heart, this is who she is," Bowers said.
Bowers said she felt that she and Piedmont were on a journey together, and they often swapped stories. It made her feel better, Bowers said, to be able to confide in someone who was dealing with a similar situation.
"There are some resources out there, but a lot of them require you to make a phone call or meet with strangers," Bowers said. "On the Internet, you're anonymous. Roberta found it soothing."
Joyce Kent, another friend of Piedmont's, said the blog was an important tool to chronicle what her father was going through so other people in the same situation could relate and compare. Kent said the blog helps from "the research end of things." With blogs such as Piedmont's people can compare symptoms, timelines and get a better understanding of how the disease affects different individuals, Kent said. Kent had a close friend who was diagnosed with Alzheimer's and could sympathize with what Piedmont was going through, she said.
Piedmont has kept up with the blog since her father's death, though she admits she doesn't post as often as she used to. On Wednesday, going back to posts from 2004, Piedmont said she likes the blog because it gives her the ability to relive a memory if she wants to, but that "these memories aren't stuck in my head, I've written them down on paper."
She also hopes the blog will shed light on some of the effects of Alzheimer's that people don't like to admit. Alzheimer's is often portrayed in movies and television as a disease that one can "snap in and out of," like in the movie "The Notebook," Piedmont said." But "once they're gone, they're gone," she said.
Piedmont has donated money to the Alzheimer's Association in the past, but has a big fundraiser in the works for this weekend. She is hosting a tag sale on Saturday from 9 a.m. to 2 p.m. at her home, with the help of Kent, Bowers and several other friends. She said she had been planning a tag sale for a while, but when she learned the Alzheimer's Association was temporarily matching donations, she got friends together for a sale. All the proceeds will go to the association.
Piedmont said she hopes the money will help the association in its efforts to find a cure for Alzheimer's. Of the terminal disease, Piedmont said, "I know cancer survivors, but there are no Alzheimer's survivors."
"I lost my dad," she said. "If I can help save somebody else's dad, it's worth it."
Visit Piedmont's blog at alzheimersdad.blogspot.com.
I've already gotten one call, from a lady whose husband died of Alzheimer's, who is bringing by a bunch of stuff to donate. That brings it to 7 families and 1 business. I am humbled.
The electronic link contains basically the same text as the print article, with a different title:
Blog chronicled woman's dad's experience with Alzheimer's
Posted: Thursday, June 2, 2011 10:17 pm
Russell Blair
WALLINGFORD - Search "Alzheimer's blog" on Google and the No. 1 result, above the Mayo Clinic, belongs to a local woman who chronicled the experience from when her father was diagnosed until his death 1,253 days later.
Roberta Piedmont's blog "Had a dad," began as a way to express what she was going through, dealing with her father's disease, but it quickly grew in popularity and became a source of support for others.
"I started it the day my dad was diagnosed," Piedmont said. "I wanted it to be a record of what happened - a journal."
Eventually more and more people started reading it and reaching out to her. Piedmont said she began to see the blog as an important tool for helping others going through the same thing realize they are not alone
"I wrote about the suckiest things," Piedmont said. "I wrote about embarrassing, terrible and awful things. Other people think they're alone, but they're not."
Piedmont's father, Bob Rizza, worked for more than 30 years in the car business in Meriden and Wallingford before he had to retire at age 62 due to the beginning stages of the disease. He was diagnosed a year later, on June 21, 2004, and died on Nov. 26, 2007.
Christina Bowers, a friend of Piedmont's whose mother suffered from dementia, said that Piedmont always talked about the blog. "She's a writer at heart, this is who she is," Bowers said.
Bowers said she felt that she and Piedmont were on a journey together, and they often swapped stories. It made her feel better, Bowers said, to be able to confide in someone who was dealing with a similar situation.
"There are some resources out there, but a lot of them require you to make a phone call or meet with strangers," Bowers said. "On the Internet, you're anonymous. Roberta found it soothing."
Joyce Kent, another friend of Piedmont's, said the blog was an important tool to chronicle what her father was going through so other people in the same situation could relate and compare. Kent said the blog helps from "the research end of things." With blogs such as Piedmont's people can compare symptoms, timelines and get a better understanding of how the disease affects different individuals, Kent said. Kent had a close friend who was diagnosed with Alzheimer's and could sympathize with what Piedmont was going through, she said.
Piedmont has kept up with the blog since her father's death, though she admits she doesn't post as often as she used to. On Wednesday, going back to posts from 2004, Piedmont said she likes the blog because it gives her the ability to relive a memory if she wants to, but that "these memories aren't stuck in my head, I've written them down on paper."
She also hopes the blog will shed light on some of the effects of Alzheimer's that people don't like to admit. Alzheimer's is often portrayed in movies and television as a disease that one can "snap in and out of," like in the movie "The Notebook," Piedmont said." But "once they're gone, they're gone," she said.
Piedmont has donated money to the Alzheimer's Association in the past, but has a big fundraiser in the works for this weekend. She is hosting a tag sale on Saturday from 9 a.m. to 2 p.m. at her home, with the help of Kent, Bowers and several other friends. She said she had been planning a tag sale for a while, but when she learned the Alzheimer's Association was temporarily matching donations, she got friends together for a sale. All the proceeds will go to the association.
Piedmont said she hopes the money will help the association in its efforts to find a cure for Alzheimer's. Of the terminal disease, Piedmont said, "I know cancer survivors, but there are no Alzheimer's survivors."
"I lost my dad," she said. "If I can help save somebody else's dad, it's worth it."
Visit Piedmont's blog at alzheimersdad.blogspot.com.
I've already gotten one call, from a lady whose husband died of Alzheimer's, who is bringing by a bunch of stuff to donate. That brings it to 7 families and 1 business. I am humbled.
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