Understanding

Lately Gregory has been asking "What?" when I say or ask something.

Today I asked, "Is it because you don't hear me or that you don't understand me?

He replied, "Wow, I don't understand that one."

An Update

Dear Family and Friends, 

I turn 67 today. What must that feel like? I don't know for sure. I guess it is what it is. Also celebrating my mom's passing two years ago today. My dad's passing seven years ago earlier this month. Ah, mortality!

Briefly, this trip has been difficult but I (we) are surviving it. G has been quite disoriented, further loss of language, more trouble naming things, getting dressed, loosing things, managing eating meals, etc. I have been on duty 24/7 so it has been very difficult for me ... he is having a great time:-) Most of the things he was able to do independently at home are no longer working. Hopefully some of them will come back when we are home. 

Meanwhile, we enjoyed TX with family and friends and now MX. Long leisurely days. G has been drawing with colored pencils. We both have been reading alot. Have been to all our favorite MX restaurants, shops, beach, etc. Taking naps, sleeping in, up late.

Been at the beach half a dozen time with one more scheduled. Found a great hotel (The Tropicana) to "rent" our chairs from this time around. 140 pesos ($11.00 US) gets each of us a lounge chair and shared table under a Palapa (palm woven umbrella) on the beach, towels, the use of their huge pool and any available chair at the pool, a shower or foot bath to clean off the sand. The rental fee also entitles you to 100 pesos ($7.86) worth of food: a drink and we each have been getting a club sandwich for lunch. And you can stay all day until 8:00 at night and watch the sun go down. 

Some nights we walk the Malecon (Boardwalk) and people watch, enjoy entertainment, listen to music, stop in a few stores. In our local neighborhood we have gone several times to a coffee shop to end the evening with a Cafe Latte and Tres Leches Cake. 

We walk down the mountain from the guest house but take the 50 pesos (($3.90) taxi ride up. Every day at 5:00 we have coffee and a Pan Dulce (Sweet Roll) that we purchase from the local Panadería (Bread Shop.) We usually do one thing a day. For example if we go to the beach during the day, we stay up at night. If we go out to dinner and the Malecòn afterwards, we stay up during the day.

Its been fun visiting with Susan and David, the guest house owners, and after 10 years or so have become friends. Several times we have watched sunset over a Margarita on their terrace. Tonight for my birthday they are making diner (Tuna on the grill) and got a Tres Leches Cake for my birthday (my favorite: a white cake made with two kinds of milk and also soaked in a third kind and a touch of rum. It is frosted with butter cream and a mosaic of thinly sliced fruit.)

We have made great use of my iPad and have watched streamed movies every night we have stayed up on the mountain. I have also downloaded a number of books so I guess that I have successfully made the leap to e-books although will never give up holding a real book in my hand.

One day until we come home. Will be nice to TRY to get back to routine and to our own bed, kitchen, neighborhood, etc. Not sure if this will be the last time we are able to travel but not ready to think about that yet. Need to think about a new kitty (Mariah died in February) and I always need to play with the possibility of also getting a dog.

Anyway all for now. Will be in touch when we are home and settled in. 

Lots of love,

We appreciate having you be part of our life,

Michael & Gregory

Experiences

We don't discuss our experiences anymore
We just share them.

The Suggestion

Don't remember the exact interaction but I do remember having to quiet myself, take a breath and figure out how to respond.

"It could be worse!" he suggested.

I was able to breath again and we continued our interaction.

Marbles Anyone

Forgetting the name of an actor, after accumulating 60+ years of facts and figures in one's mind, should only be the worst of Alzheimer's/ Dementia Disease. However, I like that Mr. Reardon ends the article with: "Maybe I should be thankful to the threat of Alzheimer's. It reminds me to live life as fully as I can. Or, as Gwendolyn Brooks writes, "conduct your blooming in the noise and the whip of the whirlwind."

(Tribune illustration by Mike Miner / March 10, 2012

http://www.chicagotribune.com/news/opinion/ct-perspec-0311-alzheimers-20120311,0,6707658.story

Holding Hands

Like petals of a tightly closed rose
Like butter spread on warm toast
Like a kitten closely snuggled in your arm
Holding my honey's hand makes me happy so.

Today

“What day is it,?" asked Pooh.
"It's today," squeaked Piglet.
"My favorite day," said Pooh.”

Or maybe ...

Was his anger part of the changes that Alzheimer's brings or maybe we just had an argument. Couples argue you know. I hadn't thought of that for a while since I try to be so careful in my interactions with Gregory, usually taking most of the responsibility for keeping our life even and feeling the failure when they go awry. But sometimes a good "fight" is what every successful couple needs. Alzheimer's or not! Just thinking.

Frontal Lobe Dementia

Taken from depression-guide.com this information about Frontal Lobe Dementia seems to describe what I have seen Gregory experiencing rather than the typical Alzheimer's symptoms. I have mentioned this previously but wanted to do so again.

Frontal lobe dementia is the name given to any dementia caused by damage to this part of the brain. It includes Pick's Disease but can also be caused by other diseases. They all have similar symptoms and prognoses.


Pick's Disease (Frontotemporal lobar degeneration)


A progressive dementia occurring in middle life characterised by slowly developing changes in character and social behaviour, or impairment of language, due to degeneration of the frontal and temporal lobes of the brain.
Some dementias, however, do not follow this pattern. Vascular dementias have recently been characterized by specific diagnostic criteria. They can be summarized by sudden onset of dementia and step-wise progression with focal neurological findings and positive brain imaging. Lewy body dementia is characterized by early appearance of symptoms in the course of dementia, accompanied by progression and hallucinations. Primary progressive aphasia includes early dissolution of speech in an otherwise cognitively intact individual. They can become globally aphasic in spite of being able to continue to run a household or even work. Eventually 20% per year progress to dementia, which appears similar in the advanced states to Alzheimer's disease.

Frontal lobe dementias are characterized by early psychiatric symptoms followed later by cognitive impairments. Frontal lobe syndrome is therefore the presenting symptomatology: apathy, poor social judgment, and bizarre behavior. Histologically, the frontal lobe dementias are proven to be characterized by Pick's cells (Pick's disease). At the present time, these diverse histological types are clinically indistinguishable.

Symptoms of Frontal Lobe (aka Frontotemporal) Dementia:

• Impairments in social skills
  - inappropriate or bizarre social behavior (e.g., eating with one's fingers in public, doing sit-ups in a public restroom, being overly familiar with strangers)
  - "loosening" of normal social restraints (e.g., using obscene language or making inappropriate sexual remarks)
• Change in activity level
  - apathy, withdrawal, loss of interest, lack of motivation, and initiative which may appear to be depression but the patient does not experience sad feelings.
  - in some instances there is an increase in purposeless activity (e.g., pacing, constant cleaning) or agitation.
• Decreased Judgment
  - impairments in financial decision- making (e.g., impulsive spending)
  - difficulty recognizing consequences of behavior
  - lack of appreciation for threats to safety (e.g., inviting strangers into home)
• Changes in personal habits
  - lack of concern over personal appearance
  - irresponsibility
  - compulsiveness (need to carry out repeated actions that are inappropriate or not relevant to the situation at hand.
• Alterations in personality and mood
  - increased irritability, decreased ability to tolerate frustration
• Changes is one's customary emotional responsiveness
  - a lack of sympathy or compassion in someone who was typically responsive to others' distress
  - heightened emotionality in someone who was typically less emotionally responsive

Persons with this form of dementia may look like they have problems in almost all areas of mental function. This is because all mental activity requires attention, concentration and the ability to organize information, all of which are impaired in frontal lobe dementia. Careful testing, however, usually shows that most of the problems stem from a lack of persistence and increased inertia.


What are the differences between Pick's disease and Alzheimer's disease?
The main difference between Pick's disease and Alzheimer's disease is that the damage occurs in different areas of the brain, at least in the early stages. In most cases of Pick's disease, the frontal and temporal lobes of the brain are the areas affected and with Alzheimer's disease, the temporal and parietal lobes are affected.

Who gets frontal lobe dementia?

Frontal lobe dementia, including Pick's disease, can affect both men and women. Although it can affect people at any age, it usually begins between 40 to 65 years of age.

Duration and Treatment of Frontal Lobe Dementia - FLD

The length of FTD varies, with some patients declining rapidly over two to three years and others showing only minimal changes over a decade. Studies have shown persons with FTD to live with the disease an average of eight years, with a range from three years to 17 years.


No medications are known currently to treat or prevent FTD. Serotonin-boosting medications may alleviate some behaviors.

Facts and Tips about Frontal Lobe dementia

• Frontal lobe dementia is the form of dementia. It is degenerative disease which mainly affects frontal lobe of the brain.
• Change in personality, loss of language skills, ability to carry out difficult tasks are other features of frontal lobe dementia.
• Clinically, Pick disease may be identical or very similar to frontal lobe degeneration. 
• Persons having age between 40 to 65 years are mostly affected by frontal lobe dementia.
• Frontal lobe dementia causes slow decline in behavior and judgment. 
• Symptoms of frontal lobe dementia are very similar to vascular dementia and only brain image can make a distinction between them.

On Vacation

Time to get up. I stay in bed a little longer because he usually takes about a half an hour to get his bathrooming completed.

He comes back to say, I need help with knobs and things.

You’re not taking a shower now are you? 

No. I need light.

Why don’t you go back and try to figure out how to turn the light on by yourself?

He gets mad. Fuck You! (I think this is a first.) Why are you treating me like this? He goes back into the bathroom, no light, and sits on the toilet to move his bowels. 

Hate talking about this as I have always said that one one way to stay young is to never to talk about your bowels and here I am talking about bowels … well at least not my own. Lately he has begun to forget, while sitting on the pot, if he wee’ed, if he went, if he wiped.

Finally I show him how to turn on the light. Mention that he seems to be at an all time low. Say I hate treating him like an invalid. Say that after four days in the same hotel room I would think he would know how to turn on the light. Say that I can help him brush his teeth if he would like.

He spends an inordinate amount of time showering (after I got the water running,) brushing his teeth, cleaning up. He isn’t able to see the deodorant which is on the counter in front of him. He looks at the travel soap dish and wonders aloud where the top is, until he taps it and realizes that the lid is on, it’s just clear. He is not sure where to rehang his wash cloth.

I help him select his clothes and suggest a few times how to dress. You might want to put your pants on before your shoes. I continue typing a blog avoiding dispair when sitting on the side of the bed he comments, “You know … I think … it has to do … with … fear … or something. 

Of course I melt. I see he is near tears and go over to him and hug him close. He begins to cry. I sing-song to him, “You have nothing to fear. I am here to protect you. I will never let anything happen to you. I will take care of you. But I WILL challenge you now and then and I won’t always be nice to you. And we laugh. And the crisis has passed for both of us. And he says he isn’t afraid anymore. And I hold back tears through most of breakfast. 

My thinking is that he may have been afraid of being in a strange place or at having such problems with everyday activities but I suspect that his fear was at angering me, causing me to be upset, and possibly fearing loss of my love. Perhaps it was fear, very much like a child’s fear when he has upset a parent, of  having love withdrawn as punishment.

Which caused me to be upset. I’ll try harder. This vacation so far has not proved to be a vacation, at least not for me. Welcome to Circle World.

Carrots

Now that I have posted about the good things, I'll share with you the most recent "explosion."

• • •

Gregory arrived at the bedroom door, where I was working at my computer. He couldn't tell me what he wanted to tell me. He finally said, "Can I show you something?"

Back in the kitchen where he was making his lunch, he pointed at the salad drawer which was sitting on the counter. "Do you notice what's missing?" He said this is a way that felt like because something was missing he couldn't go on with making his lunch. I went into my problem solving mode (probably a mistake.)

"Nothing is missing." I said.

"Yes."

"No." At least nothing that would prevent him from continuing his lunch preparation.

"Yes."

I got more basic. "You mean there are no carrots?" Everything else was there but the carrots.

"No."

"Then what. The only thing we are out of is carrots."

"Yes. Carrots."

"But you just said 'No." OK. And why are you telling me this? So I can put the on the grocery list?"

"No."

"Is the fact there there are no carrots stopping you from making lunch?"

"No,"

"Then why are you telling me about this?"

SILENCE

"Is it because you want me to put them on the grocery list?" Repeated.

"No."

"Then what do you want me to do?" Repeated.

SILENCE

I walked over to the cabinet where we keep the grocery list and showed him. "Do you want me to put them on the list?

"Yes. I guess." I didn't dare ask what he meant by I guess since we had had such difficulty traveling so far as it was.

I, stupidly and knowing better, then continued to review all the gives and takes, pushes and pulls, yes's and no's that got us to that point and ended by saying, "And you probably haven't followed anything I've just said and why do I go on?"

"I'm sorry."

"It's not your fault." Then why do I carry on. Sometimes these exchanges, communications or lack there-of just get rolling and can't stop. I am trying to be better. I want to be better. I wish I was better. And then I feel like shit!

You'll Know

You'll know that things are not going well when you find many posts here. It is a way for me to process and put to rest, at least for a brief while before the next one, the injuries sustained by the most recent explosion.

Perhaps I should try to write about the good things that happen.

Like Gregory just having brought me half a pear (the other half for his lunch) sliced and beautifully arranged on a plate.

Or the fact that this time when folding the underwear, he got his size and my size correctly into different piles. In the past I have found myself unwittingly trying to fit myself into his underpants which were neatly folded into my drawer. Not a pretty sight if you know how slender he is and how ample I am.

Or how he tells me every night before we drift off to sleep how much he loves me.

For these things I am grateful.

Happy Valentine's Day

Happy Valentine's Day to my BLOG readers:

Happy Valentine's Day: The Results

So today we celebrated Valentine's Day over breakfast. G opened his card, and his dozen long stem red roses, and his photography book, and his chocolates. It gave me great joy getting all those traditional things of love for him.

He was so pleased to hand me the card he purchased for me, details of which were included in yesterday's post. It meant a lot to me that he remembered and I was pleased to help him follow through with his remembering. Below is a picture of the card.

Covert analysis: Unusual card. Not of the type he would usually get for me. Not really romantic. Since he couldn't sign his name and at my suggestion to draw something he added what looks like tears? blood dripping for the heart? who knows?

Overt analysis: So pleased. Hugged him and thanked him. Sat down together to look through the photography book that "we bought for each other" and even thought it was still morning, broke into the candy "we bought for each other."

Reality analysis: Honestly pleased.  He did the best he could. He expressed his love for me. He felt good about the exchange and therefore so did I. HAPPY VALENTINE'S DAY.

Tonight we go to a fancy restaurant for dinner then to see "Midsummer's Night Dream" at the Shakespeare Theater on Navy Pier.

Happy Valentine's Day

Yesterday Gregory urgently needed to tell me, "I don't...." Then he put his hands in the shape of a Valentine "...have one for you."

"We can stop in at Barnes and Nobel and you can buy one for me." I replied, pleased that he knew Valentine's Day was not too far off.

Tonight on our way home from dinner with friends we stopped in at B&N and I pointed him towards the Valentine's Department saying, "Go pick out one for me, I'll pay for it, and I promise I won't peek."

I was looking at books when he came up to me and said, "I think I found one but there is a problem."

"Show me, and I won't peek." He showed me a display card but there were no extras available. I explained the situation and pointed him towards another rack of cards. "You'll have to find another one you like."

He found one he liked, gave it to me (I didn't peek) and I paid for it asking the cashier to put it into the envelope without my seeing it.

We got home. I gave the card to Gregory and through no more about it. I was at my computer doing some writing and five or ten minutes later asked into the living room, "Are you doing OK?"

"No." came the reply. I went to see what the matter was. Gregory had been sitting at his desk, red envelope in hand, "I don't know what to do."

"Well take the card out of the envelope. I won't peek." He did so. "Now open the card." He did so. "And sign your name on it."

"That's not easy, I can't write."

Thinking fast on my feet, I gave him his pencil holder full of colored pencils (all the while not peeking) and said, "Well then draw me a picture." Which he did, put it in the envelope without help, and sealed it. "How did that go?"

"You know," he realized, "I don't think I can write anymore."

"Well, that's OK, you can tell me and I'll write for you." He liked that.

Now comes the difficult part for me, waiting to see what the card looks like. Last March when he proudly gave me my birthday card, it showed two bears in adjoining rockers, holding hands, but the card wished me a Happy Easter. It certainly was the thought that mattered, although I felt sad.

The Journey

This was shared with me by my friend Pat Anderson. It resonates!

The Journey by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.

I Love My mouse

This is the third of three postings about the recent possibility of using a skin cancer drug to help reverse Alzheimer's.

I have nick named Gregory (if only in my mind,) MOUSE.

On one hand it reminds me of the adorable, yet complex character in the "Tales of the City" by Amistad Maupin.

It also is a quick way to keep awareness of what it must be like to experience what Gregory is going through based on the above study's mouse's inability to do something as innate, and simple as building a nest.

Mouse. My little mouse.

For more than three decades, Armistead Maupin’s Tales of the Cityhas blazed its own trail through popular culture—from a groundbreaking newspaper serial to a classic novel, to a television event that entranced millions around the world. The first of six novels about the denizens of the mythic apartment house at 28 Barbary Lane, Tales is both a sparkling comedy of manners and an indelible portrait of an era that changed forever the way we live.

Se La Vie & Bienvenido

Se La Vie & Bienvenido
(This is the life (in French) and welcome to it (in Spanish.)

Last night, just before bedtime,
as we were having a Cheerios snack,
Gregory had the jug of milk in one hand,
his cereal bowl on the counter, and
he was stumped about what to do next.

This morning, making his breakfast,
as I was making my coffee,
Gregory had the electric tea pot in one hand,
his tea mug in the other, and
he was stumped about what to do next.

Our life,
many times a day, hour, or minute,
Gregory on the one hand,
me on the other, and
we are often stumped about what to do next.

New Hope for Mice

This photograph was part of the Wall Street Journal article which I just posted. I was reading the article on my iPad (which is a new behavior for me) and when I flicked to the next page there was a full life picture of these mice who were part of the study. It compares normal mouse nest building behaviors and Alzheimer's Mouse nest building inabilities. The final picture shows the Alz Mouse, after the "miracle drug," being better able to build his nest. 

Just looking at the photographs and reading through the captions brought me to sobbing. I was so sad for the mouse but seeing the obvious loss in the mouse'a ability to accomplish something so innate, simple yet crucial like nest building brought home what Gregory goes through on a daily, if not hourly basis. 

I will be better in my support of him.

New Hope

Woa! It has been along time since I posted. Partly because we are getting ready to visit family & friends in TX and then on to MX for a month. I am sure I'll do a lot more posting then. Meanwhile, this article in the Wall Street Journal caught my attention. Very interesting. Will do a follow up post on the image of the mice.

• HEALTH & WELLNESS
• FEBRUARY 10, 2012

New Attack on Alzheimer's

Cancer Drug Reverses Disease's Symptoms in Mice; Human Tests to Start Soon

By GAUTAM NAIK

A cancer drug quickly and dramatically improved brain function and social ability and restored the sense of smell in mice bred with a form of Alzheimer's disease, suggesting a new way to tackle the illness in people.

Alzheimer's is associated with the accumulation of protein fragments called amyloid-beta in the brain. The new research found that an existing skin-cancer drug called bexarotene cleared the protein in the brains of stricken mice within days. The study was published Thursday in the journal Science.

A skin-cancer drug has shown some success in treating Alzheimer's disease in mice, according to a study in Science. Stefanie Ilgenfritz has details on The News Hub.

Because bexarotene is known to be safe for treating skin cancer, "it might be worth trying in Alzheimer's patients as well," said Rada Koldamova, a neuroscientist who works on Alzheimer's at the University of Pittsburgh and wasn't involved in the study. However, she added, the drug's effectiveness against the brain malady would first have to be established in human trials. Test results in mice often don't pan out in humans.

Everyone's brain produces amyloid-beta protein, but while a healthy brain can efficiently remove the protein fragments, the brain of a person with Alzheimer's can't. The resulting buildup is believed to result in impaired learning and memory functions.

The disease is a growing problem, especially in aging societies, but no effective treatment has been found. The drugs used today work just for a short time and only relieve symptoms, instead of halting the disease. Over the years, drugs in about a half-dozen late-stage human trials have failed to make the cut.

In 2010, Eli Lilly & Co. abandoned a treatment that blocked an enzyme linked to amyloid formation after the drug appeared to worsen some patients' condition. Another technique, currently being tested in patients, is to reduce protein formation by triggering an immune response.

The new research, funded by a number of foundations, takes a completely different approach, said Gary Landreth, a neuroscientist at Case Western Reserve University in Cleveland and a co-author of the study. His team's method, he said, is to "help Mother Nature do what she normally does" in clearing amyloid fragments from the brain.

Scientists know that a protein called ApoE acts as a sort of garbage-disposal unit, helping to degrade amyloid-beta proteins. Dr. Landreth figured that if he could get the brain to make more ApoE, the protein clearance would be enhanced.

He set his sights on bexarotene, an orally administered drug known to activate a protein that helps switch on the ApoE gene. In 2009, Dr. Landreth asked a newly minted postgraduate student in his lab to give the drug to some "Alzheimer mice." Three days later, the amyloid plaques in their brains had largely disappeared.

"It was unprecedented," Dr. Landreth recalled. "I initially thought she had screwed up."

In the Science report, Dr. Landreth and his colleagues describe similar tests done with over 100 mice. When the drug was fed to mice with Alzheimer-like symptoms, it quickly improved their cognitive, social and olfactory functions. Losing the sense of smell, a disorienting and often debilitating experience, can be one of the first signs of Alzheimer's in humans.

Healthy mice typically will gather tissue paper strewn around their cage and use it to make a nest. Alzheimer mice stop doing that. When the drug was given to diseased mice they made nests, a sign of cognitive improvement. The benefits lasted up to three months, at which stage the scientists stopped their observations because that was sufficient time to show the drug's effects weren't transitory.

It is widely believed that the memory problems seen in the affected mice and human Alzheimer patients are caused by small soluble forms of amyloid beta. The researchers found that within a mere six hours of getting the drug, soluble amyloid levels had dropped by 25%. This effect lasted for three days.

In the U.S., bexarotene is sold under the name Targretin, which is owned and marketed by Japan's Eisai Co. Patents on the drug—and hence its profitability—will start to expire this year, one reason drug companies may be reluctant to jump on bexarotene as a possible Alzheimer's treatment.

Dr. Landreth and a study co-author, Paige Cramer, are founding scientists of ReXceptor Inc., which has licensing options from Case Western to use bexarotene to treat Alzheimer's disease.

Bexarotene is a long way from being an approved Alzheimer's drug, or even being deemed ready for off-label use—when a doctor legally prescribes a drug for an unapproved use. As a first step, Dr. Landreth plans to start a safety trial in a dozen patients in the next few weeks.

He needs to figure out the right dose and duration of the treatment for prospective Alzheimer's patients, and judge the effects over several months. If all goes well, he hopes to engineer a version of the medicine that is more potent and works at a lower dose, to minimize any side effects.

Carl Wagner, an organic chemist at Arizona State University who is collaborating with Dr. Landreth on the project, said he had synthesized half a dozen such versions and was testing them.

Write to Gautam Naik at gautam.naik@wsj.com

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