Voice member published in AHEC News

[Guest guest]

Thanks to Dorothy in Oklahoma for mailing me the copies of articles! One

article was written by Dorothy and published in the AHEC(Area Health Education

Center) News - October issue - Page 14. Below you will find not only

Dorothy's article but the Physicians(and I'm using that term very loosely!)

Comments that were published right below her article. FYI: The editor for

this publication is Failing email: rhpahec@.... I am emailing

her a bit of info to pass on to these 2 so called doctors so that next time

they address an issue on CJD, they might know what they are talking about.

Anyone that would like to include a comment to this editor feel free to

contact me.

Here's Dorothy's article:

> She is a healthy looking 80 year old woman seeing her Dr. with

complaints

> > of anxiety and confusion. She is alert, oriented, well-dressed, but

> > complains she doesn't feel " right " .

> > Well, no wonder since her husband of 50 years has died fairly recently

> and

> > she has moved out of her home to a new town and new apartment in order

to

> > be near family. The physical exam shows no apparent cause for her

> symptoms

> > so an appropriate anti-depressant is prescribed. However, it does not

> help

> > her symptoms and they worsen, she is now having serious episodes of

panic

> > and fear. A change of anti-depressant doesn't help and she is not

> > socializing with neighbors and rarely leaves her apartment.

> >

> > The Dr. recommends a senior adult day care program and she attends 5

> days

> > a week with no improvement. Soon people mention she is becoming

> suspicious

> > and complains of severe pains in various parts of her body that come

and

> go

> > with no apparent cause. Repeated trips to the E.R. show no physical

> > problem.

> >

> > Caregivers in the apt. complex report she is wandering about at night

> > wondering where everyone is and cannot be convinced it is night. Also

> her

> > personal hygiene and grooming are not good. She stumbles occasionally

> and

> > reports falling a lot.

> >

> > Alarmed her family insists on hospitalization to evaluate her

condition.

> > The primary physician suspects Alzheimers Disease even though she was

> > apparently well 4 months ago. The consulting neurologist suspects a

> > psychotic episode because there seems no reason for her rapid

progressive

> > inability to walk. All lab. tests and imaging are normal but the woman

> is

> > losing mental and physical abilities daily. She will never live

> > independantly again.

> >

> > Perhaps you have seen a patient with symptoms like these or variations

of

> > these. I am an R.N. and I certainly have. However, this was my

MOTHER,

> > and she did not have Alzheimers Disease and she was not Psychotic, she

> had

> > Creutzfeldt- Disease (CJD).

> > This disease destroyed my mothers brain and the symptoms reflected the

> > areas of the brain that were affected. In 7 Months from the time I can

> say

> > for sure her symptoms began, my mother was mute, blind, unable to move

> > anything or swallow and having myoclonic seizures that caused a grimace

> on

> > her face that I will never forget. Eventually CJD destroys so much

brain

> > the body cannot maintain life or the victim develops pneumonia or

sepsis

> > and dies. CJD can affect persons in their 40's on up but usually

occurs

> in

> > the 50 to 60 age group.

> >

> > My purpose here is to alert health care providers to be aware of CJD

and

> > consider it when a patient with RAPID PROGRESSIVE Dementia with or

> without

> > physical symptoms is seen. Some cases proceed to death in as little as

3

> > months, others may have a slower course and survive over a year. CJD

is

> > ALWAYS fatal and TOTALLY untreatable now. Even though a fatal

diagnosis

> is

> > terrible, sending a physicaly ill person to a psychiatric facility is

> > worse. The sooner the family can have a diagnosis, the better prepared

> > they can be to deal with the relentless progression of this disease.

> >

> > A study done some years ago of Alzheimers patients revealed through

brain

> > autopsy after death that 13% in reality had CJD. Hopefully diagnosis

of

> > Alzheimers now is better but CJD symptoms vary from individual to

> > individual and may begin with suddden vision loss or hearing loss or

even

> > weakness of one side or extremity. Sometimes dementia is the only

early

> > symptom.

> >

> > Cjd is thought to be caused by a normal component of the brain(a prion)

> > that for some reason changes shape and causes other prions to change to

> > abnormal shapes that cause destruction of brain tissues. Much is

unclear

> > about CJD. It can be familial in that a mutated gene can be inheirited

> but

> > it is also infective. A donor cornea from a person having CJD can

> transmit

> > the disease to the recipient. Studies from years ago report the

> incidence

> > of cases as one per million but if l3% of one group of Alzheimers

victims

> in fact

> > had CJD it is certainly underdiagnosed. The only 100% sure way to

> > diagnose CJD is by brain autopsy after death. I would direct you to

two

> > internet sites, CJD

> Voice(http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm) and CJD

> Foundation (http://members.aol.com/crajakob/index.html). for

> > more on cause, incubation time and infectivity.

> > I am happy to answer questions about CJD for anyone and would be

pleased

> to

> > be a reference person for families dealing with the disease. One woman

> > who's mother was dying of CJD told me, " The people I tell about my

> mother

> > either do not know about the disease and stare blankly at me or if they

> > know what is is, just cry. " This is the atmosphere families live with.

> My

> > mother forgot me, my brother, herself, and then forgot how to move at

> all.

> > I only pray that at that point she was unaware as she had no way to

> > communicate.

> >

> > Please be aware of this disease and you may save some family the

> nightmare

> > of going from Dr. to Dr. seeking a diagnosis thereby wasting a loved

ones

> > aware days only to find out the truth when the loved one can no longer

> > communicate.

> >

> > Dorothy Kraemer R.N.

> > DEK@...

Here are the Physicians' Comments onCJD

By Matt Ivory, MD, and , DO

We would like to sympathize with the writer of this article, as her mother

did have a terrible disease and it is always quite difficult to deal with

someone's death close to you, especially when it occurs in such a rapid

fashion.

Initially this disease was believed to be mainly infectious, as it was only

seen in tribes who ate brains as part of their culture. There have been a few

reported clusters in families, which suggest that there may be a genetic

component. However, to simply suggest that this is a normal part of the brain

which changes to a not normal part of the brain, is a far too simple

explanation.

CJD and Alzheimer's can only be definitively diagnosed on autopsy.

Although CJD is more rapidly progressive, the effects on the brain are very

similar to Alzheimer's and the treatment is essentially the same. Therefore,

it is probably not as important to make a diagnosis as it is to note the

symptoms and treat appropriately. Some of this treatment may require

psychiatric care, as does Alzheimer's and other dementias.