Friday, September 28, 2007

More Fun With Dick and Jane


Last night, we attended a lecture at UCSF on Alzheimer's Disease. As we headed for the campus, I said, "I'm glad you decided to come with me."

"I'm the guest of honor," said Flip. "The specimen."

"You may be the guest of honor, but they have the right of way," I commented as someone ran a stop sign. Flip's cautiousness saved us from being sideswiped on the crest of a hill.

The evening began, somewhat amusingly, with people committing atrocious acts with their cars in the University parking lot in their haste to get to the Alzheimer's lecture. Flip, who was driving, grew increasingly agitated and finally burst out to no one in particular, "You got mental problems?" (For some reason, when angry, Flip reverts to a New York accent which I recognize, having grown up there, but to which he has no entitlement since he is from Los Angeles.) I have to admit, grudgingly, that he has a point: New Yorkese is the perfect medium for expressing rage.

We had to sign in and show photo ID's for security. Like in airports. Apparently, the University believes that journeys of the mind are as likely to attract terrorists as those in which people are bodily transported from place to place. We were directed to follow the purple balloons to the Conference Center. I thought with wry mirth of Dick and Jane as, holding hands, we navigated the many twists and turns highlighted with balloons to the auditorium. Dick and Jane run, run, run to an Alzheimer's Evening. Or maybe, Dick and Jane Grow Up.

We turned to each other at the exact same moment and said, "I wish I had a pin." It's no accident we're together. "I hope the balloons are still here when it's over," said Flip. He must have been traumatized by Hansel and Gretel, whose intentions of following their trail of bread crumbs home were defeated by hungry birds.

The lecture was devastatingly informative. We were shown diagrams of how the disease, characterized by plaque and tangled, ropey fibrils, progresses. It always follows the same path through the brain. It is inevitable. There are no loopholes, no reprieves for good behavior. Section by section, it destroys every part of the brain, removing everything that makes a person who he is and leading finally to the end stage where he forgets how to swallow and breathe.

The only thing up for grabs is how long it takes in a particular instance. This disease completely robs a person of himself. My heart is breaking even as I recognize the benefit of knowing now how it will be then. There was a panel of two neurologists and a financial adviser, which I thought odd until he explained how much the care of someone in the later stages costs. It's beyond terrifying. President Bush cut a huge amount of money from research of this disease right before he began the war in Iraq. He has also made it increasingly difficult for people to get state aid for such care. After all, we have nations to conquer. Perhaps his rationale is that if he kills off enough young Americans, there will be fewer people who might be afflicted if allowed to grow older. Meanwhile, the disease is exploding as baby boomers age.

One of the doctors stated that what we need is something as powerful as chemo for Alzheimer's, and there is nothing even remotely close. Because of Bush's cuts, he said, we have lost an entire generation of young scientists who might otherwise have gone into Alzheimer's research, but now will not. During the Question and Answer phase of the evening, I had a possibly wacky idea which I wanted to ask about, but didn't get called on:

A number of years ago, Human Growth Hormone was highly touted as an anti-aging treatment. Movie stars were flying to Switzerland for injections of the substance that was believed to dissolve some kind of mysterious bodily plaque. Since one of the factors in Alzheimer's is the growth of plaque in the brain, I wonder if perhaps treatment with HGH could be helpful in reversing it. The disease typically attacks the elderly and only rarely someone as young as Flip, although that is changing, so it seems that anti-aging procedures or medications could have some effect.

I wish I were a scientist because if there is to be a cure, it is absolutely necessary to consider the problem from a new angle. I say that with all respect for those who are using their difficult and expensive medical educations to study diseases and to offer hope to all of us that the nightmare of Alzheimer's will one day be over. The Alzheimer's Association had a table spread with cookies which I recognized as a Pepperidge Farm assortment and some brownies that Flip declared excellent. I collected many pamphlets from a longer table and we left, fitted out for our disease as with a diaphragm. We missed the season premiere of "Gray's Anatomy" because of a real medical problem. I guess that's fitting, in a way.

32 comments:

Ian Lidster said...

I love 'Noo Yawkese' even though I've never been there. I periodically segue into Archie Bunker's Queens patois if I'm pissed off about something. It fits.

Otherwise, dear friend, your candor and honesty about this heartbreaking situation is inspiring. You are a tough and honest lady whom I admire immensely.
I equally admire the preceived equanimity about it all that I see in Flip. You are obviously both very fine people and none of this is fair. Unfortunately, no holy book of which I'm familiar mentions anything about 'fair'.
Thank you for sharing your journey with us. It gives huge pause for thought and puts one's own worries into perspective.
It's a privilege to know you, Susan.

Open Grove Claudia said...

sigh.

I'm sorry that these are your realities right now. I'm grateful that you have grace and humor about them.

I know a lot of people who take growth hormone perscribed by their doctor. I had a couple clients ask about and I always say:

"Lyle Alzado said it gave him brain cancer."

It's usually a reaction to the source of the hgh. Although Lyle was taking hgh harvested from human corpses.

I take an amino acid regimen that is supposed to increase your hgh. I like it quite a bit, mostly because I recover from my workouts and don't have as much pain from my spine injury - although it gives you weirdo dreams. I read about it in Life Extensions about 20 years ago. If you'd like to know about it - shoot me an email.

Blessings to you both. You don't know how long you have, but then again, no one does. Besos!

thailandchani said...

Wow.. just wow.... It makes me dislike Bush even more than I thought was possible. What an ethic for a society, eh? Only those who can pay for it should have their diseases cured?


Peace,

~Chani
http://thailandgal.blogspot.com

heartinsanfrancisco said...

Ian,

I am tough and honest, but that hasn't always been considered a good thing.

Flip has a magnificent attitude which humbles me every day.

Thank you for your always positive input, and for caring.

Claudia,

Thank you again for the information you've provided by email. I will check it out and let you know how it goes.

I pegged you early on as someone who cared about others, and I was right. I love it when I'm right.

Chani,

Someone suggested to me that it would be wonderful to somehow transfer the disease from Flip to Bush, to which I responded, "How could anyone tell?"

For a man who seems personally brain dead, he has done more harm than anyone in my memory who has held that office.

The CEO said...

You may not want to try this, and I wouldn't blame you a bit if you didn't, but NIH has some Phase 2 and maybe some Phase 3 trials going on in San Francisco with Aricept, if Flip is 60 or older.

http://www.clinicaltrials.gov/

and type in Alzheimers, San Francisco

I have this light a candle mentality, sorry to inflict it on you. I'd have rather been getting the free Pepperidge Farm cookies with you guys and seen the tape later.

I have to warn you about science. We don't know much, and then we think we know something, then all of a sudden, AH HA, then we realize all the things we got wrong along the way. Einstein made quatuum leaps. Freud made huge leaps. The rest of us, we crawl, and sometimes regress.

And that brings me to chocolate. Thank God for chocolate!

heartinsanfrancisco said...

Monty,

Thanks for passing this on, but Aricept flunked out with us two years ago because of horrid side effects, and Flip is nowhere near 60.

But the thought of chocolate always makes me smile.

the walking man said...

Never,ever not even for one heartbeat, in time, lose hope.

Peace

TWM

Franki said...

I didn't think I could despise "W" more than I do.

Turns out I could fit a little more in.

WNG said...

I am not planning on ever actually growing up, but if I ever did it would be so that I could be like you.

heartinsanfrancisco said...

Mark,

I won't. (At least, I hope I won't.)

Franki,

Funny how that works. Do the words "bottomless well" mean anything to you?

Wng,

I should probably start thinking about what I want to be when I grow up, but it never seemed that urgent before.

I am not Star Jones said...

it's the pin comment that makes me glad that you two found each other.

thank you for sharing.

NoRegrets said...

No luck with the RNAi?

I'm glad you did not carry knives (I'm referring my Dick and Jane animated thing)... :-)

heartinsanfrancisco said...

Star,

Yeah. It would be hard to be married to a man who didn't understand that balloons, like pomposity, are meant to be punctured.

No Regrets,

It sounds exciting but apparently, there are problems with it destroying healthy cells, too, so it needs to be more finely tuned.

Interestingly, this wasn't mentioned by anyone at the lecture, but I intend to ask our doctor about it when we see him in October.

Lone Grey Squirrel said...

Wishing Dick and Jane many many more years of fun together. May you have many balloons to burst.

Molly said...

You forgot to tell us---were the purple balloons still there after the lecture; did you find some pins? and how many balloons did you burst?

heartinsanfrancisco said...

Squirrel,

We're laying in a store of them for the winter, kind of like squirrels do with nuts. So I think we'll be just fine, thanks.

Molly,

They were but we didn't, so we couldn't.

thethinker said...

I didn't know it was possible to hate Bush even more than I did before reading this.

It's things like the pin moment that show how strong you two are. I know you two can make it through whatever life throws at you with optimism and a great sense of humor.

heartinsanfrancisco said...

Thinker,

And lots of hatpins!!

Thank you, Julia.

Rebecca said...

It seems you both approach this awful, terrifying thing with such good grace and humour. It's just not fair, is it?!

I shall hope, along with you, that some better treatments and even a CURE is discovered very soon.

heartinsanfrancisco said...

Rebecca, thank you so much for your kind thoughts.

It remains to be seen how much grace I can muster when things get worse, but with so much encouragement from others, I feel that I'll be able to do whatever it takes.

Jocelyn said...

Your recounting of the evening is so vivid. I found myself particularly moved by your description of the progression of Alzheimer's through the brain.

It sounds like jungle warfare.

Except so much more personal and, therefore, tragic.

Tanya Brown said...

Oh, goodness. I'm very, very sorry.

As for Shrub having a rationale for anything - this is Shrub we're talking about. He probably doesn't even know how to pronounce the word.

heartinsanfrancisco said...

Jocelyn,

It's guerrilla warfare all right. There can't be anything worse than having your own body turn against you.

Tanya,

There are so many words like that. I think my personal favorite is "nucular."

witnessing am i said...

May you and Flip always have each other, fully, and may you each always carry a safety pin in your pockets . . .

witnessing am i said...

Oh and I love the idea of "Dick and Jane Grow Up." That is so damned funny and amazingl heartbreaking, just as life is.

CS said...

A powerful argument for stem cell research. Sometimes I despair for us as a society.

I'm s sorry you guys are traveling this path.

heartinsanfrancisco said...

David,

His 'n' hers safety pins in blue and pink. I love it.

Sometimes growing up isn't all it's cracked up to be, you know?

Cs,

I'm sorry, too. It's like a personal Hurricane Katrina. But I know there will be some beauty along the way, too.

I agree about stem-cell research. It's hard to reconcile the president's pro-life stance with sending people off to die in Iraq.

Odat said...

My heart goes out to you Heart...and Flip....keep on writing about it...it helps when you take the pain and divide it up like this.....Keep moving forward!
Peace

heartinsanfrancisco said...

Odat,

I appreciate your comment more than you know. It felt too indulgent to post twice about this in a short time.

How is your mom doing?

urban-urchin said...

Echoing all the other posters: I agree with ian. It's a privilege to know you. I am even more disgusted with Bush then ever- how will we last another 18 months with him in office?!
And for what it's worth- it's not indulgent- it's what's going on in your life. i want to read these things.

Crankster said...

I'm glad you found your way safely back to the car.

And I wish we'd start appropriating money to the things that really matter.

heartinsanfrancisco said...

Urchin,

Thank you so much for saying that. I certainly don't want to drive people away.

I have no idea how we've survived all the months and years of him so far. He has done more harm to our country than all the other presidents put together.

Crankster,

Really. Well, I guess we do. We appropriate money to the things that matter to our Great Leader, annihilating everyone on the face of the earth but him and his cronies.

Bitter? Me? Nahhhhhh. I prefer to use the term clear-eyed.