Another Enlightening Post by

[Guest guest]

(PS -- I posted a reply to this article that many experts now believe

LBD is the 2nd most common...)

Fwd: Dementia probably of the God only knows type, and unfortunately

she's not telling (as is her want from time to time)

Again we are in the midst of another round of " I've been rediagnosed

disease " going around with some of the PWD " Several years ago just as

I started to write there was a mild epidemic of it, and now again

some verbal folks, Lynn, , Charlie are announcing their doctors

now believe they have some form of dementia other than Alzheimer's

disease. I've long suspected there is less a disease called

Alzheimer's and more a combination and interaction of the less

prevelant diseases of dementia Vascular dementia,

Dementia with Lewy bodies, Alcohol related dementia ¡V Korsakoff's

syndrome, Fronto Temporal Lobar Degeneration (FTLD)or Creutzfeldt-

Jakob disease. When they interact in certain subtle ways they create

conditions which we label as Alzheimer's disease.

The drug companies and even the National Alzheimer's Association have

participated in the lean towards Alzheimer's as THE disease of

dementia, at least in America. After all it's in the name of their

organization, and several drug companies sell pills approved for

Alzheimer's disease by the FDA. To their credit, the National

Alzheimer's Association has asserted it really means dementia and all

it's probable causes, but it hasn't bothered to publicize that much

or develop programs to support people who have them, and the pills

have been approved for lots more diseases than Alzheimer's disease.

About 60% of people living with a diagnosis of dementia in Europe are

further diagnosed as being of the vascular type.

Vascular dementia seems to come in two forms. Vascular dementia is

the broad term for dementia associated with problems of circulation

of blood to the brain. It is the second most common form of dementia.

There are a number of different types of vascular dementia. Two of

the most common are:

Multi-infarct dementia ¡V this is probably the most common form of

vascular dementia. It is caused by a number of small strokes, called

mini-strokes or transient ischaemic attacks (TIA). A stroke involves

the death of a section of brain tissue due to a blockage or

interruption of the blood supply. A stroke can cause damage to

specific areas of the brain (for example, the part of the brain

responsible for speech or language) as well as producing generalised

symptoms of dementia. Binswanger's disease (also known as subcortical

vascular dementia) ¡V this is associated with stroke-related changes

to the brain.

Here in the good old U.S. of A. about 60% of those diagnosed with

dementia probably have the Alzheimer's type and 15% probably have the

vascular type. Who is right and who is wrong? Does it make any

difference? Isn't dementia dementia.

Yes and no.

It makes a difference in terms of public perception and the impact it

would have on it, if people who are speaking up and out about their

disease now say at the end of their remarks said " and oh by the way I

probably don't have that form of dementia I probably have a different

form. "

Indeed there were several noted " authorities " in the field of

Alzheimer's disease and treatment who expressed reservations about

reviewing my book out of apparent fear that it would turn out I

either never had any disease ( an extreme Munchhausen disease

groupie), or I had something other than Alzheimer's disease and/or

dementia (perhaps depression requiring I stick my finger in an

electrical socket to shock me back into remembering and focusing).

After all how can anyone with the disease they have studied all their

lives be like them? Why aren't I more like they think I should be?

Let's look at his motives rather than the patients history, the

doctors who have diagnosed him, his test results, and his own self

reported behaviors. " Was he, is he really as smart as me? " they ask

themselves.

Well what should someone with dementia be like? Like -

Mental decline

Cognitive loss

Memory loss

Short-term memory loss

Forgetfulness

Personality changes

Behavioral problems

Confusion

Repeating questions

Becoming lost in familiar places

Loss of judgement

Inability to drive

Unable to follow directions

Disorientation

Neglecting personal safety

Neglect of hygiene

Neglect of personal appearance

Neglect of nutrition

Unfortunately I have all! Just not all at once. I may write another

book about how to act like you have dementia probably of the

Alzheimer's type so others will support and believe you .For me it is

so disabling and disheartening to have to deal with this " do you or

don't you issue. " I wish others would sit next to me and feel my

frustration at trying to churn this piece out in under 6 hours, when

in the past I could have ripped it right off the top of my head. How

my mind wanders and I have interrupted myself XX number of times. How

I remember something when I am distracted and doing something else

and by the time I make it into my office and sit down I have

completely and utterly forgotten it. I know what I know, and I know

what others who should know know. We both seem to know the same

thing. At least thus far! (of course this is always subject to some

revisionist doctor who announces I have a bad ingrown toe nail on the

left toe of my left foot and because of my serious peripheral-

neuropathy I have not felt the pain, but my brain must still deal

with it. As a result perhaps my brain is mimicking the symptoms of

Alzheimer's disease to distract me from the pain I can't feel in the

first place.

But I digress albeit digression on an important issue for those of us

living with dementia.

It makes a difference in terms of the symptoms, the onset of

symptoms, the pace of the decline, and the behavioral changes which

are at the root of many of the day to day problems of the disease,

especially in the early stages.

For sure it makes a big difference on how humans beings perceive how

they are being impacted by the probable disease. For instance, it

amazes me how the relative suddenness of onset of various symptoms is

missed by some people with an vascular dementia, yet quickly noticed

by some of those with a diagnosis of Alzheimer's disease. I don't

doubt the genuineness of the feelings and perceptions of those with

one form who are suddenly reshuffled into another deck of symptoms

with a different label on the cards. It simply shows the power of

suggestion, the ability of our minds to overlook some deficits and

concentrate on others influenced by the words of a neurologist who

him or her self will admit they are only offering an educated guess.

My heart aches for people who are misdiagnosed and/or rediagnosed.

How many different futures will the diagnoses of doctors lead them to

consider for themselves. How many more diseases must their care

givers be forced to research and understand before they can ever hope

to come close to empathizing with their loved one. How many groups

should all of them attend as the dementia disease of the year shifts

in their medical charts. Does it really make a difference in terms of

the prevalence of the disease if they live in Europe or the U.S. of A?

The discovery of new imagining techniques, correlations with

physiological differences between the diagnosed and the undiagnosed

(i.e. little A's (for Alzheimer's disease) floating in our spinal

fluid vs. little N's (for normal) floating in the spinal fluid of

others, and of course there are other more sophisticated measures) is

not the giant leap forward the discoverers wish it to be, and

sometimes boast it is. We still don't know for sure who does and does

not have just Alzheimer's disease because we don't know exactly what

causes the disease. We can look at dead brains until we are blue in

the face from the odor, and still not know if this or that person had

the disease. We just know their brains look alike, using the grossest

of measures (a ruler!).

It makes a difference in terms of how the population perceives

dementia and Alzheimer's disease, a frontal lobe dementia, and Lewy

body dementia, and on and on through the other 90 or so sets of

symptoms, labeled as diseases, all under dementia's tent. It's

confusing at first to learn Alzheimer's disease has befallen on of

your friends. What happens when they find out it isn't Alzheimer's

disease, is frontal lobe dementia? What form of frontal lobe

dementia. And what ever happened to having just plain old vanilla

dementia?

I am not, I hasten to announce, a researcher, scientists or

physician. For the past six years, every year I have been tested (at

least once each and every year) with every paper and pencil test

neuropsychologists can find (sometimes two or three times in the same

year), and every other test my insurance company will allow and thus

far it always turns out the same....dementia probably of the

Alzheimer's type. I wish that it weren't so, even if I have already

written a book titled Alzheimer's From the Inside Out. I would gladly

write another book: Inside Out from When you think you have

Alzheimer's from the Inside Out, My imagined journey down the road

less traveled but it turned that all the time I was on an entirely

different road.

In the end, dementia is dementia, but before the end, a choice of

words is a choice of perceived worlds. I think in the interests of

our own perceptions of our selves and our probable diseases we should

be careful how we first accept a " probably diagnosis " , and have it

checked at least once every two years. If and when individuals are

rediagnosed it must create yet a second earth quake between their

ears. The issues created just by the announcement " You have Dementia

probably of the whatever type " upset most interpersonal apple carts.

Labeling what up-set the cart as Alzheimer's simply gives people a

name to Google. The human issue is the impact the perceptions of the

words used to label the disease have upon everyone with-in ear shot

of the diagnosis, and most importantly the impact of those who have

the disease whatever it is labeled growing between their own ears.

My plan had been to convert merge all my mailing lists (now total

almost 7,000 into one, produce a monthly spiffy looking newsletter

and distribute it to everyone. I'm not yet there. It is more

expensive than I thought, it is more work than I thought, and

thinking and making up my mind is harder and harder for me. I need to

raise a few more pennies through speaking and my book. A professional

service would solve the opt in and out problems, the changes of

address, and my own issues with keeping everying straight. This is a

small hodge-podge mailing list of about 500 people. Some of them are

much much larger and more targeted. You are the people who have been

with me the longest, thanks.

Google only sends 500 in a batch and even this mailing list is now

over 500 so I had to break it up into two pieces. I am always looking

for more people to include and chat with. Respond and so will I. Ask

newbie's to write and I will put them on it. I am also mindful of

protecting your email address from the dreaded spamers. I have only

recently learned how to do this using Google and once I get a service

only your name will appear on the email. Thank you all for sticking

with me.

Now that my book is out I ran into a little issue with my publisher

about being careless with attaching a copyright notice to materials

from the book. I have an arrangement with them that if you ask my

permission, I grant it, I inform them and they approve, you can

reproduce up to 25 copies of materials taken directly from my book.

You must be the personification of a non profit organization, a

health care professional. If you are a person with the disease or a

caregiver you must jump through the same hoops and you can make one

or two copies of whatever. I want to spread my ideas and words to as

many people as possible, that is why I use the Internet rather than

just publish in professional journals. Please feel free to think of

ideas of who might benefit from reading this and ask me. I will work

with you and my publisher to quickly make it so.

I'm still looking for a few more speaking engagements this year. I

have a menu of offerings which can be combined in one visit of

speaking to staffs, PWD (people with dementia), caregivers, Boards,

Public presentations, public radio and TV, fund raising and whatever

you can think of as long as I get to keep my clothes on. It's nice

when people pay my expenses. It's great when they pay an honorarium.

It doesn't happen all the time, and that is okay too. Call or write

me and we will see what we can work out together.

The material here has not been copyrighted. Please feel free to use

it any way you see appropriate, as of this moment it belongs to yours

truly. I am thinking of writing another book, but please go out and

buy one first. Go to www.healthpropress.com, or amazon.com to buy it.

Or go to your local book store and ask them to order it. I am jumping

through a few more hoops before it will be in bookstores on the shelf

but we just put new wood floors in our house and we need the money

now, so please buy it now.

Thanks

--

Stand up! Speak Up! Do not become a victim

of your own silence.

Speak for yourself and those who will follow. Ask Carers and Friends

to do the same.

Today will never be here again.Time is of the Essence!! Use it

wisely!!!

Tell as many people as possible your

perceptions of your interactions with

professionals, with carers, with friends, with

strangers, with your government.

They won't change unless they know, and

they can't know unless and until you

SPEAK UP!

Seek to create a Palpable Sense of Change

and of Urgency!

Join a Crusade, Now!

Be a Crusader, Now!

Lead a Crusade, Now!

" Aim above morality.

Be not simply good,

Be good for something. "

Henry Thoreau