Memories and the 'A' word

Subject: Memories and the 'A' word
From: Spud Murphy
Date: 19 Feb 01 - 01:22 AM

Memories:
Gus Kahn and Bert Van Alstyne

Memories, memories,
Dream of love, so true,
O'er the sea of memory
I'm drifting back to you.
Childhood days, wildwood days,
Among the birds and bees,
You left me alone,
But still you're my own,
In my beautiful memories.

That's the memories part. It's going to take a lot more effort to explain the "A" part. Just bear with me, if you can.

As I have said elsewhere among these threads, I live in a veterans' home. The one I live in is the largest such home in the United States. The population remains a fairly constant 1,125 veterans, some with their wives, who are residents of this particular home. The average age of all these folks is 74.8 years, and therein lies the rub.

Statistics indicate that if you are in the 75 year age group, there is a twenty per cent chance that you are in a beginning stage of Altzheimer's disease. The odds go up from there, so that by the age of 82, they are one in three.

While I don't (as yet) have Altzheimer's, I suffer another form of dementia that is the result of a stroke, and so I am familiar with that aspect of Altzheimer's that has to do with memory loss. The great good fortune of my situation is that as the part of my brain that relates to current or recent events has atrophied, the recollections of my early years has achieved a clarity that I believe is phenomenal. For our purposes here, the significant aspect of that is that I have begun to recall, along with other less esoteric things, the lyrics, or a substantial part of them, from all the old cowboy and other songs my dad taught me when I was a small boy. The other day I found myself singing snatches of Abdul Abulbul Amir. This in spite of the fact I can't remember what this morning's news headlines were. I have to write down the threads that interest me on a piece of paper, or I lose them completely and forever.

And so, after this longwinded intro, the question arises:

WHAT WOULD YOU DO IF YOU SUDDENLY WERE TOLD YOU HAD .............ALTSHEIMER'S DISEASE?

Subject: RE: Memories and the 'A' word
From: wdyat12
Date: 19 Feb 01 - 01:30 AM

Spud,

I would probably forget about it, but I would tie a string on my good finger.

wdyat12

Subject: RE: Memories and the 'A' word
From: Amos
Date: 19 Feb 01 - 01:31 AM

I cannot answer that question with any certainty, friend. But I believe i would throw myself into learning new things, for one. And for another I would set about exercising the deliberate connection of memory with details in the past -- specifics. For example, I would set about trying to remember someone I had really liked; then another earlier time I had really liked someone. And another. And in each moment I would try to pin down the colors, or a particular sound, or the position of the sun, or a sense of temperature. I would crank this from various perceptics, various kinds of memory of a positive sort -- good communications, times of besting the elements or making something work, times of certainty about how it was. and in each, finding the details. I would make a hobby of it. This on the principle that the brain will tend to establish new pathways when so exercised.

That is my take on it. I don't know if it has any bearing or not.

regards,

A.

Subject: RE: Memories and the 'A' word
From: Spud Murphy
Date: 19 Feb 01 - 02:35 AM

For Alzheimer's patients there is no remedy, no known cure, no hope, nothing. I don't think the world , or more precisely, America, is reckoning with this problem, nor is it even willing to ackowledge the enormity of it.

We struggle beyond reason, to increase longevity,- for this?

Spud

Subject: RE: Memories and the 'A' word
From: Ebbie
Date: 19 Feb 01 - 03:20 AM

Spud, I'm 65. Yes, I have thought of it. I even wrote a song about it once that has to do with what I assume must be the scariest period of Alzheimer's- when you know there's something wrong but you believe that for some unknown reason everyone has abandoned you.

The Mists of Time

I remember I once had a family
And I know that I was happy then
For I can see their bright little faces...
But I don't know where, or when.

Chorus:

Memories lost in the mists of Time
I don't know much anymore
The years, the days, the hours all run together
Memories lost in the mists of Time.

Yesterday- or was it just this morning?
They gathered 'round my rocking chair
I recall the scent of many candles
But I knew nobody there.

An elderly friend called me one day to say goodbye- she was leaving Juneau and returning to Anchorage, her hometown. She and her doctor had become aware she was in the early onset of Alzheimer's and she was going 'home'. She told me of the precautions she was taking- writing everything down for her to refer to in the early stages, and putting in writing all the insurances, bank accounts, medications, clothes sizes, food likes and allergies... I really admire her. This is a woman who has been a sharp political activist, a feminist, an achiever who was going at this the way she had gone into everything else all her life. And guess what- I saw in the Anchorage paper the other day that she's getting married! (How that will turn out, who knows. She might have a happy life until she gets hit by a truck.)

My point, I guess, is that she didn't quit living.

The part I remind myself of is that there are many ways of losing one's reasoning ability and memory. As you said, stroke is one of them as are a number of other brain traumas.

They say that in the animal world there are no happy endings- and it is true for human beings more often than we would wish. If we live long enough there will come a time when one by one we suffer losses, both mental and physical, as well as losing to death many of the people we've considered essential to our very survival.

An old friend of mine who died at the age of 97 no longer recognized her daughter although she certainly remembered that she had had a daughter. I know that the reason she didn't recognize her was that Marie didn't resemble the daughter she remembered. A white-haired Marie didn't fit.

I'm planning to love to live until something different comes along. And if I can't deal with that something different, those around me will have to, I guess.

You sound like one who loves life too so, not to worry.

Cheers

Ebbie

Subject: RE: Memories and the 'A' word
From: Mary in Kentucky
Date: 19 Feb 01 - 08:53 AM

The youth orientation of our society and accompanying negative stereotypes associated with aging are being re-examined in light of current research findings and our country's improved health care.

This quote was found here. The home page for this site is here. (http://www.coa.uky.edu/default.htm)

I found another quote on an associated site here.

"Ten years ago there was enormous pessimism about Alzheimer's," says Charles Smith, associate professor of neurology in the UK College of Medicine. "Once you made the diagnosis, that was pretty much it. Now, prevention of Alzheimer's looks realistic, and that has grown out of research at centers like ours."

These are all from sites associated with the Sanders-Brown Center for Aging at the University of Kentucky. It's one of the leading centers in the world for research on diseases of aging, especially Altzheimer's. (I think the original money was from Col. Harland Sanders of Kentucky Fried Chicken fame.)

Spud, I noticed in the Anonymity thread that you were a listener. I was just telling Night Owl on PalTalk that we can recognize each other!

You asked for specifics. My MS diagnosis took ten years in which I felt the abandonment that Ebbie speaks of. So you might say I learned a few things. I've half jokingly told my kids that if I get Altzheimer's, don't worry about me, I'll be happy. It's that inbetween time that is scary.

1) Find out all the information you can, and try to guide those around you to do the same. Right now, evaluate yourself to find out if you really do want to know everything. Then make sure your doctor and family members are convinced that you really do want to know everything. Keep talking. If those around you are in denial, find somebody else to talk to.

2) Don't expect any one person to meet all your needs. I was always surrounded by friends and family who loved me very much, but were always in deep denial.

3) Keep your sense of humor. One of my neighbors has dementia associated with MS and constantly jokes about her mental state.

4) When you're confused, just trust loved ones. I'm blessed with a hubby who can take charge. Also, my faith gives me tremendous comfort that I'll get to the same place regardless of how or when I get there.

5) Check out support groups. I've never used one for MS, but years ago The Mother's of Twins Club was a lifesaver.

6) Keep reading the Internet, especially research news. Beware of medical advice though, because a very large percent of it is simply incorrect or misleading.

7) PM me if you want more info!

Mary

Subject: RE: Memories and the 'A' word
From: Jeri
Date: 19 Feb 01 - 08:53 AM

Spud, you can trace threads you want to come back to. Just look near the bottom of this page, right above the "Repy to Thread" box. You can click on "Add Thread to Tracer." When you go to your personal page ("Personal Pages" in the banner at the top), you'll have a list of all the threads you've traced. You can un-trace them whenever you want.

If I suddenly found songs in my head from long ago, I'd write them down or sing them into a tape player and send them to a friend to transcribe.

I'd probably also write down my strongest/most important memories, or record them on tape.

I'd also probably start telling stories of my life while I could still remember it to everyone who would listen. Most folks wouldn't want to listen, but some would. I enjoy hearing others talk about their lives.

I think the frightening thing for a person with Alzheimer's is the stage when they know they're losing themselves and are powerless to stop it. It might be a little less frightening if they knew someone would remember for them.

As far as short term memory, my mom used to make lists of reminders and stick them on the refrigerator after her (minor) stoke. Keeping a journal wouldn't be a bad idea either, and it's easy to do on a computer.

Subject: RE: Memories and the 'A' word
From: Spud Murphy
Date: 19 Feb 01 - 05:44 PM

Ebbie, Mary, Jeri: I thank each of you with all my heart for your thoughtful words of kindness. I didn't mean to cause alarm. I mostly am upset with the passivity shown by most of officialdom in the face of such things as AD. I didn't anticipate you reading so much else between the lines. But then I neglected to reckon with the amount of experience you all have had in doing just that. I think mudcatters are professionals to the n/th in that realm.

Yes, I do worry about AD in my own case. I try to keep up with the current research as much as my dimwitted facility allows. I mostly do that by frequently visiting the web site of the Altzheimer's Association. (www.alz.org). Currently I am interested in research going on at the University of Newcastle upon Tyne in England regarding "The Impact of Stroke in Alzheimer's Disease: Cellular and Molecular Studies" because of my own situation. I was impressed by the University of Kentucky site, Mary. I will use it in the future.

I am an activist, and have been one from the start of my residency here at the Home. I don't cotton well to the follies and vagaries of the bureaucracy so I became perforce a sometimes advocate for veteran's issues as they affect the Home. I guess the Home Administration was of like mind with General Longstreet on the occasion of his infamous utterance, because they eventually invited me 'inside the tent' and now I am a lobbyist on behalf of the Home in its quest for funds to finance an Altzheimer's Unit to house our several members who are needful of specialized care.

Jeri, thank you not only for your encouraging words but also for the swell tip on the tracer thing. How stupid of me not to notice. And also for shaping up my little song to make it stand straight and tall. I couldn't believe how the minute my back was turned, it flopped down and spread all over the place.

And Ebbie, your song was great and so was your advice. By the way, when Wally Hickel was governor of Alaska, I was his Commissioner of Public Works. Public Works included the Division of Aviation, The Marine Highway (ferry system), Division of Waters and Harbors and a few other agencies. We lived in Totem Park, up toward Mendenhall Glacier.

Spud

Subject: RE: Memories and the 'A' word
From: Ebbie
Date: 19 Feb 01 - 06:42 PM

Why'd you leave, Spud? I think Juneau is a wonderful place to live! I understand that until the 80s when renovation began downtown it was a great deal different. It sounds like you were in Wally's administration in the 60s, not the one in the 90s? By the 90s, I would imagine those agencies had been separated. You must have been a busy man, as it was.

It sounds to me like you're doing a great job where you are.

For what it's worth, both MS and Alzheimer's to me feel like break-through diseases- that there is most likely a single cause for each of them and that there will one day be an 'Ah ha!'.I pray God that it's so.

Ebbie

Subject: RE: Memories and the 'A' word
From: Penny S.
Date: 19 Feb 01 - 07:08 PM

And get all those songs and things down. My mother died of a brain tumour, and had a form of dementia before she went, but before that she kept telling us, over and over again, the things that she remembered. We were so sad that they had never got written down. Last week, my Dad discovered that they had, when he was turning out an old drawer. I am so looking forward to reading her memories.

Penny

Subject: RE: Memories and the 'A' word
From: Mary in Kentucky
Date: 19 Feb 01 - 07:11 PM

Spud, I just had another thought! You mentioned that you are an activist. Did you know that the former Miss America, Heather French, is now the wife of the Lt. Gov. of Kentucky and her mission is VETERANS ISSUES! That with the fact that she has close ties to the University of Kentucky and could possibly be the next first lady of KY if her husband Steve Henry becomes govenor...well, it just may be a contact for bringing more light to issues involving Altzheimer's and Veterans.

Subject: RE: Memories and the 'A' word
From: okthen
Date: 20 Feb 01 - 02:27 PM

Spud there is a medicine I'm told, that can arrest the desease, but is very expensive.I read your posts on Singapore with interest,I hope you continue to add to this forum for a long time to come, so there is a purpose to your longevity.

cheers

bill

Subject: RE: Memories and the 'A' word
From: Hollowfox
Date: 20 Feb 01 - 03:04 PM

Spud, the fact that you are taking an interest in this is a sign that you don't have Alzheimer's. My father is in the early stages, and one of the symptoms is (apparently) a loss of interest in things. So keep kicking, and get down (paper, computer or tape) those esoteric things, no matter what they are, or they won't get passed on and they'll be lost forever. I'd hate to see that happen.

Subject: RE: Memories and the 'A' word
From: Jeri
Date: 20 Feb 01 - 05:57 PM

One of the things that upset my mother, and I became aware of because of her, is the tendency to dismiss conditions and diseases in older people simply because they're old. It was very frustrating for her to hear doctors (attempt to) explain that they didn't care to do anything about a potentially treatable problem because they chalked it up to being a normal part of aging. I think Alzheimer's falls into that category frequently, unless it happens to strike a younger person.

One day, with any luck, we're all going to be "older people."

(Spud - pretty sharp, figuring out who fixed your song!)

Subject: RE: Memories and the 'A' word
From: Mary in Kentucky
Date: 20 Feb 01 - 06:20 PM

Jeri, they don't just treat older people like that. My MS is hardly noticeable except for my voice and equilibrium, and since that's not life threatening, not really taken seriously. Things are changing, awareness that is, but slowly.

Subject: RE: Memories and the 'A' word
From: Jeri
Date: 20 Feb 01 - 07:11 PM

I was having some numbness in my hands, blurry vision in one eye and sciatica. The doctor denied another doctor's referral. I said I'd been told the symptoms which came and went might be indicative of MS. He said "You don't really want to know if you have that, do you?" He was trying to save a buck.

What's frightening is I probably knew more about MS than that doctor before I finally saw someone who cared. I'll bet Spud knows more about Alzheimers than many doctors. It's the patients who wind up doing the most research because their doctors don't have the time or think they know enough already.

Maybe if I suddenly found out I had Alzheimer's, I'd read everything I could on the subject, then look for a doctor who knew more than I.

Subject: RE: Memories and the 'A' word
From: Mary in Kentucky
Date: 20 Feb 01 - 07:30 PM

Jeri, I scoured the journals at a medical school library near my home. One article in Nature (I think) told of researchers who were interviewing patients for an unrelated survey and kept running across very angry, articulate people. It turns out that they were MS patients who had been lied to. This attitude was much more prevalent 50 years ago than it is now.

As far as diagnosis, it's a bit easier now for ~95% of cases because of MRI. I'm always amazed at patients who don't want to do this, or especially who don't want to use one of the ABC drugs because of injections.

Subject: RE: Memories and the 'A' word
From: Metchosin
Date: 20 Feb 01 - 08:24 PM

I too hope more is done and soon to combat this disease, it has touched our family personally as well and in response my brother wrote the following poem.

Grampa Jack

I watched as you daily unremembered things
sort of like baking a cake in reverse
a little less of this, a little less of that
take away one teaspoon of the past.....
But suddenly fold in one lucid moment!
a sprig of over sweet lilac
one milk cart which left you a hunchback...one donkey engine
a kerosene lantern lantern sent in a drunken rage across the head of
your beloved mother, by your father who you beat unconscious
and left forever....
three lost brothers, or,
were they lost family photographs....?
And then there was the time when that locomotive derailed and
and you were there to pull the engineer from the wreck but the stream
had done its damage, like your years, and when you took his arm
to pullhim to safety, his skin skin slid off his arm as smoothly
as Garbo's evening glove, only....
gone
blank
Eyes like wet, grey sand and a rattle of a voice
through lips as thin as tin...no teeth, you see
saying "who are you"
and you crushed who you loved but no longer knew.....
And I watched quiet....hurt...angry...ashamed, as you slipped
behind that veil of ether to unremember me
for the last time.