Encouraging new treatment for dementia is emerging

Some of my friends email me or post to me on Facebook when they see a science article talking about Alzheimer's or dementia, as everyone knows this is the cause nearest to my heart.  I do read them all.  Some I just shrug and say "yeah maybe" or "you wish" but this one...well, this one seems promising.
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.  

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Screenprint of original article

Alzheimer's and Dementia Clinicial Studies--Pay it Forward

A friend of mine sent me a link about Alzheimer's recently, and I was surprised--shocked--horrified--to read that new drugs and other treatments can't find enough volunteers.   I can't believe that.  We would have signed a deal with the devil himself if he had agreed to give my dad a drug that would have given him a chance at a longer, healthier life.
I don't know how most of these trials work, but I know that the one my dad was part of did NOT make him STOP taking his medicine, it only added new medicine.  And when we found out at the end that he was on the placebo, he received the real drug then.
The Alzheimer's Association now has a web page that helps match volunteers with clinical trials.  I'm lucky enough to live near New Haven and to have had access to Yale University for my dad's studies, but if you don't live around here that doesn't mean you shouldn't try.   There are even trials to sign up for healthy people who don't have AD--I added myself to their data bank.
Being in a clinical trial is about paying it forward.  I knew that the drug would probably not help my dad.  But down the line, it might have saved someone else from my family's pain.
image source
I am still accepting donations for my Walk to End Alzheimer's team--the walk is October 2, 2011.  If you are not already doing the walk and haven't donated to anyone, I'd appreciate anything.  This is my first year having a team and I'd love to show up with a lot of money to prove you don't have to be a corporation to raise funds. Click the to the left (or in my sidebar) to donate.

Dimebon, a new miracle treatment for Alzheimers?!

I saw something about Dimebon last week, on my laptop,stupidly didn't bookmark it.  Then I had to clear my cache and cookies and things after a media player upgrade installed a pop-up server, and I lost the site.  Imagine my surprise to realize that someone trying to promote it had already gotten in touch with me and I hadn't realized it!  I was going through piles of messages about World Alzheimer's Day (see previous post) and there it was, not one but TWO notes.   Sometimes I am such a blonde!
There is a blogspot blog about studies on Dimebon in Australia--they are the ones who told me about the CONCERT study.   The Medivation, Inc site says Phase III studies are looking for people NOW. 
Details from Medivation:

Dimebon is an orally-available, small molecule that has been shown to inhibit brain cell death in preclinical models relevant to Alzheimer’s disease and Huntington’s disease, making it a potential treatment for these and other neurodegenerative diseases. Based on clinical and preclinical data generated to date, Medivation believes that Dimebon works through a novel mechanism of action improving mitochondria function.

Let's say that again.   Inhibit brain death.   The hideous atrophy.   Oh, if only someone can now come up with an easy way to diagnose it before someone's brain is atrophied by a third and they are showing obvious symptoms!
If you or your loved one wants to test this drug, please contact them.  For the most part my father's experience with clinical testing was positive for him and for the family.  Even though he ultimately ended up with the placebo, I still feel it was worthwhile.

The CONCERT Study, a Phase 3 Trial of Dimebon (Latrepirdine) in Patients with Mild-to-Moderate Alzheimer’s Disease Who are Currently Taking Aricept^® (Donepezil), is Now Actively Recruiting Patients. Study Highlights:

• International, double-blind, placebo-controlled safety and efficacy study
• Designed to determine whether dimebon, when taken in combination with Aricept^®, safely improves memory, thinking and awareness, daily functioning, behavior, and the ability to care for oneself
• Enrolling 1,050 patients at sites in the United States, Europe, Australia and New Zealand
• Patients aged 50 and older with a clinical diagnosis of Alzheimer’s disease, who are currently taking Aricept^®, may be eligible to participate
• Two-thirds of patients will receive dimebon and one-third will receive placebo
• All patients who complete the 52-week study, including those taking placebo, will be able to take part in another study where they receive Dimebon at no financial cost until the drug is approved

For more information on CONCERT study locations, eligibility and enrollment, please visit www.concertstudy.com or call toll-free 1-877-888-6386.

In Australia, call 1-800-235-526 or visit www.concertstudy.com

185 drug to HALT Alzheimer's may be available by 2012

Way too late to help my dad, and the parents and loved ones of those currently suffering. But it will help the next generation. (Emphasis mine.)
Daily pill that halts Alzheimer's is hailed as 'biggest breakthrough against disease for 100 years'
A daily capsule of rember, as the drug is known, stops Alzheimer’s disease progressing by as much as 81 per cent, according to trial results. Patients with the brain disorder had no significant decline in their mental function over a 19-month period....
It is the first time medication has been developed to target the ‘tangles’ in the brain that destroy nerve cells, leading to deteriorating memory.
The drug helps to disrupt this process, preventing the formation of new tangles and loosening those already created.
...Eventually the drug could be used to stop the disease in its early stages before symptoms have even appeared, it is hoped....The drug works by dissolving the tangle of tau fibres which releases waste products that kill nerve cells, and by preventing the fibres from becoming tangled.....The trial was a Phase 2 study, which checks the safety and efficacy of the drug, but if a large-scale Phase 3 trial due next year repeats the findings, the drug could be available for prescribing by 2012. At the same time, the research team is investigating a way of diagnosing Alzheimer’s at its earliest stages when tau tangles are first being formed in the brain.
People may have these tangles in their 50s, long before symptoms develop, and the researchers hope the drug could be used as a preventive treatment.
I'm not even sure what I could say to comment on this. I hope it's true. By 2012 I'll be well on my way to being 50 and my dad was diagnosed at 62--meaning he probably had his tangles way before that. I honestly believe he had the beginning stages of AD when he was around 55--would that be tangles in his 40's?
I hate living in fear.
And of course, the article was about Great Britain's availability. Are they even looking at approval for the US yet? I'll have to look into it more.
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126 Circling the Drain

Haven't written for a while. Nothing in the news about AD that caught my fancy. I see my dad, but he hardly speaks anymore, so not many amusing anecdotes to relate.
Here's the best of a paltry bunch: I took him to the bird vet with me a few weeks ago. He told the receptionist I was his wife. He started a conversation about one of my birds with someone in the waiting room and continued it with the technician in the exam room as if they were the same person.
My remaining cat, Nutter, has lung cancer, and he's really my focus right now, for the time he has left and I haven't been working on anything else except the novel my friend and I are writing.

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A couple of weeks ago, my mom took my dad to the doctor to get a new/different prescription for his violent outbursts. I don't remember the name of the drug he prescribed, but he wrote it up for 1.5 mg. When my mom went to fill it, it was only available in 5 mg--nothing smaller. She borrowed my pill splitter and tried giving him half a pill (2.5) which basically just made him almost catatonic.
But the pills have a worse side effect, one that's continuing even though she stopped the drug.
Incontinence.
Maybe it's just a coincidence, who knows. He has been having a problem finding the bathroom at night and peeing in the hallway and dining room. But then my mom found him in the basement, where the cat has his little hideaway, urinating on the floor. She yelled at him to stop, and instead he just let go and peed down his leg, on his pants. When she kept telling him to stop, he simply pooped his pants, right there. I asked, "did he fart and poop came out?" (that' s happened before) and she said no, he closed his eyes and grunted and filled his pants.
As soon as he realized what he had done, he became very upset. My mom cleaned him up, got him clean clothes and thought that was the end of it.
But he did it more than once, including in the bed, and he's also hiding the evidence--she finds "surprises" in the laundry hamper.
He continues to use the bathroom, though. I'm not sure if that's a normal progression or not. It's not something people want to talk about. And he won't wear Depends. I told my mom to just stick a maxipad in his underwear but she said he won't do that either. And now if he's got any poop in his underwear, even just a skid mark, he gets all upset and has to change all his clothes. So he knows it's wrong to have poop in the underpants.
That's all pretty bad, right? Can't suck more than that.
Oh, yes it can.

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Yesterday, instead of lunch, I had dinner with my parents, because I had a physical therapy appointment. My husband met us there. We had a perfectly nice dinner. Toward the end, my dad had to go to the bathroom. My mom brought him and waited for him. She was gone a long time so my husband went to see if he had to go in the men's room and get my dad, but they were on their way back. My mom said a man came over to her while she was waiting and offered help. I guess his wife had Alzheimer's and he recognized the signs. It's nice that there's people like that in the world. I was at a restaurant recently and I saw a man and his wife and it was clear to me that he had it. Alzheimer's is like a secret club that no one talks about...but when you DO talk about it, you find out almost everyone's a member. And boy are the dues steep.
My husband had to leave, and I stayed with my parents while we finished dessert. The waitress brought the check and my mom handed over her credit card. It came back declined. This started a wave of events that really had to be seen to be believed.
My mom was upset that her card was declined. She had just paid the bill, and she had made purchases on it the day before and that very morning. I didn't have my purse with me and of course my dad doesn't carry a wallet anymore. My mom had no cash. I was debating taking the car back to the house, getting my purse and coming back to pay, but the waitress said they could take an ATM card, which my mom has.
At some point during this discussion, which wasn't very pleasant, my dad snatched the (dead) credit card from my mom and said it was his and refused to give it back. He read her name off it "Ann Shirley Rizza, that's me. This is mine!" He was shouting. We tried to calm him down. "That's not your name, that's not your card, give it back." He started punching my mother. (Remember, this is Friday night rush-hour at 5:30 in a crowded restaurant.)
Usually he responds to me, but to my shock he made what my mom calls the "mean face" (which is this really hideous grimace, primitive, like something a chimpanzee would make) at me and started hitting and punching me. By this time he was out of the booth and in the aisle. Everyone was staring. My mom started crying. All the while my dad was shouting that it's his and he won't give it back. I was trying to get him to come outside with me but he wouldn't come, kept fighting me, punching me, punching my mom when she got up too. The manager came over. He had no clue what to do. My mom begged him to call the police. He wouldn't.
My dad wouldn't let go of the credit card, wouldn't sit back down, wouldn't stop yelling or fighting, wouldn't listen to reason or threats. My mom told me to go and call the police.
So I did.
I called the police on my own father.
I had to say "My father is punching my mother and punching me in the restaurant and you have to come and make him stop." Those are not words I ever in my life thought I would have to say. By then of course I was crying too. It was just so awful, so embarrassing, and I was so angry and hurt and upset.
Not one, but two police cars came, probably in under 2 minutes, sirens on, lights flashing. By that time my mom and the manager had gotten my father to the doorway of the restaurant (I went outside to make my call and wait for the police).
These were not the nice cops who come and find him when he's lost. These were "we have no time for this and we aren't taking your shit" cops.
My father starts babbling, making absolutely no sense, to the cops. My mom and I were trying to explain what happened. Two people were sitting on a bench, waiting for a table, watching and listening. The woman started to laugh, very loud. I just looked at her, thinking "what a rude bitch" but my mom turned on her and started yelling, "it's not funny, he's got Alzheimer's!" The woman said, "I wasn't laughing at you" but she WAS because her and the guy with her weren't having a conversation. They were sitting and watching us. I thought my mom was going to punch this rude bitch right in front of the cops, and wouldn't that have been jolly good fun?
The cops moved the whole thing along--crazy yelling Bob, crying Ann, silent Bert, confused manager, cop1 and cop2.
I would say, conservatively, that it took a half hour to get my dad from the front of the building to the back, where my mom's car was parked. My mom told my dad right out that she was going to tell the cops to bring him to the hospital and she'd leave him there. At some point someone got the damn credit card away from him, I don't know who or when or how. Wasn't me.
The police took a statement from the manager, who really had no clue. He thought we were fighting over the bill. He went back inside, probably to get drunk. Wouldn't blame him. I felt like it and I hardly ever drink.
My mom had parked just about as far away as one can park and not be in the lot for another business. I realized that at the rate the group was moving, it would take an hour to make it to the car. I took the keys and went and got the car. My dad watched me, pointed at me, still yelling, as I got in the car to drive it up a few rows.
I pulled up, realizing that I didn't have my driver's license and I was in front of cops and decided I didn't really give a shit and they weren't going to give me a ticket--just like if you drive your drink friend home and you haven't got a license with you they won't give you a ticket for that.
My father was trying to tell the cops something about how the card was his, and the cop said, "I'll talk to you when you're sitting in the car." He opened the back door, got my father into it with that special cop-move (even though my dad always sits in the front seat, so that upset him). The cop leaned in, put the seatbelt on my dad...and then shut the door over his protests and ignored him. Very neatly done.
The cops took all our information (my mom said, "you've already got a file on us!") and let us go. My mom said, "give me that list, I can't do this anymore."
I said, "neither can I."
I went to my email on her computer and printed out the list of nursing homes.
My dad is only 66 years old.

(BTW, the credit card was shut off because my mom bought a $20 video game online that morning and the bank figured her card had been stolen, even though she had bought video games online before.)