FWD: Labelling Neurodegenerative Disorders

[Guest guest]

Pam and Bill

Pam I read your article on SNP IT REMINDED ME OF MY SISTER.

IT brought a few tears (no med,s works for them) and med,s only made my

husband Ralph more comfortable.which had sds.

Bill Ithink when it comes to reserach it,s hard to work with a brain decease than some others now with aids we would not of had to spend any money on it

Is all it would take is for the men to keep their pants sippered up at all times.

Have a good day

Blanche

[Guest guest]

I definitely agree with this.

Hugs,

Pam

---

Date: Thu, 21 Mar 2002 16:58:43 -0000

Subject: From the European PSP Society

An Extract from a Recent Bulletin of the European PSP

Society

--------------------------------------------------------------

Technological improvements in scanning techniques,

explosive advances

in knowledge of the brain and painstaking research by

neurologists

have all helped them, particularly in centres of

neurological

excellence, to recognise, segregate, diagnose and

label more and more

different, but closely related neurodegenerative

diseases – often

with obscure and even frightening names, little

understood by the

public. Alzheimer's, Parkinson's disease and Motor

Neurone are the

three largest and best known neurodegenerative disease

`labels'.

Progressive Supranuclear Palsy, Multiple System

Atrophy and Cortico

Basal Degeneration are others.

However, even within these centres of excellence,

diagnosis is

sometimes spoken of as an art and not a science; and

there are many

patients diagnosed well away from these centres.

Regrettably,

misdiagnosis can and does occur, despite

internationally accepted

clinical criteria for diagnosing (and hence labelling)

most of these

diseases. With PSP, there are, agreed for research,

clinical criteria

for possible and for firm diagnosis. Unless the

criteria for firm

diagnosis are met, neurologists are unlikely to tell a

patient that

they definitely have PSP. This can lead to tremendous

frustration in

affected families seeking to know what is happening.

Equally, it is

stressful for neurologists to ensure, as far as

humanly possible,

they avoid mis-diagnosis. To complicate the issue, for

older

patients, normal ageing also involves progressive

death of neurones.

Because some of these diseases are very similar,

mis-labelling can

easily occur.

In summary, it can sometimes be immensely difficult to

diagnose

neurological diseases accurately. A wrong label can

have devastating

implications, though no label at all may be even

worse. It is

nonetheless still, unfortunately, only too easy for

the wrong label

to be attached to a patient, leading to treatment for

the wrong

disease which can have detrimental side effects. Then,

as the disease

progresses and becomes clearer, a new label has to be

given. This can

be very difficult for the patient and family to face.

However, the

harsh truth is that it is still only on pathological

examination of

brain tissue that the actual neurological condition

from which a

patient dies can be confirmed with near certainty. It

is in these

pathological examinations that the true number of

mis-diagnoses are

revealed.

Once a label is attached to a condition, following

firm diagnosis,

treatment and support are `applied' accordingly, under

the direction

of the diagnosing neurologist. Afflicted families then

often contact

the particular Society or Association which is

involved with `their'

disease. A re-diagnosis and new label can be

traumatising to the

family concerned, with, amongst other effects, a

re-allocation of

their `back-up' and support system, as they are

switched from one

charity to another. It could be argued that a

different and simpler

label could be useful for some aspects of their care,

as many of the

symptoms (as opposed to the underlying cause) are

shared between

these diseases and nursing requirements can be

grouped, eg in

movement disorders.

For the general public, an even simpler label covering

all

neurodegenerative diseases would be enormously helpful

in engendering

generic awareness. In the same way that cancer

patients do not need

to identify the particular type of cancer that they

are suffering

from, for the public to `understand' their situation,

there is

perhaps a need for a generic name for all

neurodegenerative diseases –

`neurosy' has been suggested, but any short medically

acceptable

name with which the public could relate would be

enormously helpful

in engendering greater awareness and understanding by

the general

public of these often devastating diseases of the

brain.

______________________________________________________________________

File your taxes online! http://taxes.yahoo.ca

[Guest guest]

Pam,

You know I also agree with that assessment! I don't care if we call it PD+

until we get a specific cure for something. We do need to start screaming

about home health cuts if they are going to cut the research. If they are

going to quit looking for a cure, they MUST be prepared to care for the

patients with home PT and ST as well as respite care.

Take care, Bill Werre

--------------------------------------

Pam Bower wrote:

> I definitely agree with this.

> Hugs,

> Pam

>

> ---

[Guest guest]

Pam,

Thank you for sharing this. I have printed out and emailed it to

everyone who can't understand why my doctor has a hard time with a

diagnoses and why he said it might change after watching me for the

next few months or years. This has also helped me.

Thanks again,

Belinda

-- In shydrager@y..., Pam Bower wrote:

> I definitely agree with this.

> Hugs,

> Pam

>

> ---

>

> Date: Thu, 21 Mar 2002 16:58:43 -0000

> From: " rritch99 "

> Subject: From the European PSP Society

>

> An Extract from a Recent Bulletin of the European PSP

> Society

> --------------------------------------------------------------

>

>

> Technological improvements in scanning techniques,

> explosive advances

> in knowledge of the brain and painstaking research by

> neurologists

> have all helped them, particularly in centres of

> neurological

> excellence, to recognise, segregate, diagnose and

> label more and more

> different, but closely related neurodegenerative

> diseases – often

> with obscure and even frightening names, little

> understood by the

> public. Alzheimer's, Parkinson's disease and Motor

> Neurone are the

> three largest and best known neurodegenerative disease

> `labels'.

> Progressive Supranuclear Palsy, Multiple System

> Atrophy and Cortico

> Basal Degeneration are others.

>

> However, even within these centres of excellence,

> diagnosis is

> sometimes spoken of as an art and not a science; and

> there are many

> patients diagnosed well away from these centres.

> Regrettably,

> misdiagnosis can and does occur, despite

> internationally accepted

> clinical criteria for diagnosing (and hence labelling)

> most of these

> diseases. With PSP, there are, agreed for research,

> clinical criteria

> for possible and for firm diagnosis. Unless the

> criteria for firm

> diagnosis are met, neurologists are unlikely to tell a

> patient that

> they definitely have PSP. This can lead to tremendous

> frustration in

> affected families seeking to know what is happening.

> Equally, it is

> stressful for neurologists to ensure, as far as

> humanly possible,

> they avoid mis-diagnosis. To complicate the issue, for

> older

> patients, normal ageing also involves progressive

> death of neurones.

> Because some of these diseases are very similar,

> mis-labelling can

> easily occur.

>

> In summary, it can sometimes be immensely difficult to

> diagnose

> neurological diseases accurately. A wrong label can

> have devastating

> implications, though no label at all may be even

> worse. It is

> nonetheless still, unfortunately, only too easy for

> the wrong label

> to be attached to a patient, leading to treatment for

> the wrong

> disease which can have detrimental side effects. Then,

> as the disease

> progresses and becomes clearer, a new label has to be

> given. This can

> be very difficult for the patient and family to face.

> However, the

> harsh truth is that it is still only on pathological

> examination of

> brain tissue that the actual neurological condition

> from which a

> patient dies can be confirmed with near certainty. It

> is in these

> pathological examinations that the true number of

> mis-diagnoses are

> revealed.

>

> Once a label is attached to a condition, following

> firm diagnosis,

> treatment and support are `applied' accordingly, under

> the direction

> of the diagnosing neurologist. Afflicted families then

> often contact

> the particular Society or Association which is

> involved with `their'

> disease. A re-diagnosis and new label can be

> traumatising to the

> family concerned, with, amongst other effects, a

> re-allocation of

> their `back-up' and support system, as they are

> switched from one

> charity to another. It could be argued that a

> different and simpler

> label could be useful for some aspects of their care,

> as many of the

> symptoms (as opposed to the underlying cause) are

> shared between

> these diseases and nursing requirements can be

> grouped, eg in

> movement disorders.

>

> For the general public, an even simpler label covering

> all

> neurodegenerative diseases would be enormously helpful

> in engendering

> generic awareness. In the same way that cancer

> patients do not need

> to identify the particular type of cancer that they

> are suffering

> from, for the public to `understand' their situation,

> there is

> perhaps a need for a generic name for all

> neurodegenerative diseases –

> `neurosy' has been suggested, but any short medically

> acceptable

> name with which the public could relate would be

> enormously helpful

> in engendering greater awareness and understanding by

> the general

> public of these often devastating diseases of the

> brain.

>

>

>

>

______________________________________________________________________

> File your taxes online! http://taxes.yahoo.ca

[Guest guest]

Pam:

Could you please provide the link again to the paper discussed below. I

must have missed it earlier and would like to send it to some family members.

Many thanks.

Message: 11

Date: Sat, 23 Mar 2002 02:30:09 -0000

Subject: Re: FWD: Labelling Neurodegenerative Disorders

Pam,

Thank you for sharing this. I have printed out and emailed it to

everyone who can't understand why my doctor has a hard time with a

diagnoses and why he said it might change after watching me for the

next few months or years. This has also helped me.

Thanks again,

Belinda

-- In shydrager@y..., Pam Bower wrote:

> I definitely agree with this.

> Hugs,

> Pam

>

> ---

>

> Date: Thu, 21 Mar 2002 16:58:43 -0000

> From: " rritch99 "

> Subject: From the European PSP Society

>

> An Extract from a Recent Bulletin of the European PSP

> Society

> --------------------------------------------------------------

>

>

> Technological improvements in scanning techniques,

> explosive advances

> in knowledge of the brain and painstaking research by

> neurologists

Sennewald Charlottesville, Virginia

[Guest guest]

Pam:

Could you please provide the link again to the paper discussed below. I

must have missed it earlier and would like to send it to some family members.

Many thanks.

Message: 11

Date: Sat, 23 Mar 2002 02:30:09 -0000

Subject: Re: FWD: Labelling Neurodegenerative Disorders

Pam,

Thank you for sharing this. I have printed out and emailed it to

everyone who can't understand why my doctor has a hard time with a

diagnoses and why he said it might change after watching me for the

next few months or years. This has also helped me.

Thanks again,

Belinda

-- In shydrager@y..., Pam Bower wrote:

> I definitely agree with this.

> Hugs,

> Pam

>

> ---

>

> Date: Thu, 21 Mar 2002 16:58:43 -0000

> From: " rritch99 "

> Subject: From the European PSP Society

>

> An Extract from a Recent Bulletin of the European PSP

> Society

> --------------------------------------------------------------

>

>

> Technological improvements in scanning techniques,

> explosive advances

> in knowledge of the brain and painstaking research by

> neurologists

Sennewald Charlottesville, Virginia

[Guest guest]

Pam:

Could you please provide the link again to the paper discussed below. I

must have missed it earlier and would like to send it to some family members.

Many thanks.

Message: 11

Date: Sat, 23 Mar 2002 02:30:09 -0000

Subject: Re: FWD: Labelling Neurodegenerative Disorders

Pam,

Thank you for sharing this. I have printed out and emailed it to

everyone who can't understand why my doctor has a hard time with a

diagnoses and why he said it might change after watching me for the

next few months or years. This has also helped me.

Thanks again,

Belinda

-- In shydrager@y..., Pam Bower wrote:

> I definitely agree with this.

> Hugs,

> Pam

>

> ---

>

> Date: Thu, 21 Mar 2002 16:58:43 -0000

> From: " rritch99 "

> Subject: From the European PSP Society

>

> An Extract from a Recent Bulletin of the European PSP

> Society

> --------------------------------------------------------------

>

>

> Technological improvements in scanning techniques,

> explosive advances

> in knowledge of the brain and painstaking research by

> neurologists

Sennewald Charlottesville, Virginia

[Guest guest]

Hi ,

I forwarded that from a post on the PSP list but I recall I also posted it

several months ago and it can be found on the European PSP Society website

in their Newsletter section. Also check out the section on Related

Disorders.

http://www.pspeur.org/

Hugs,

Pam

Re: FWD: Labelling Neurodegenerative Disorders

> Pam:

>

> Could you please provide the link again to the paper discussed below. I

> must have missed it earlier and would like to send it to some family

members.

>

> Many thanks.

> > > An Extract from a Recent Bulletin of the European PSP

> > Society

> > --------------------------------------------------------------

> >

> >

> > Technological improvements in scanning techniques,

> > explosive advances

> > in knowledge of the brain and painstaking research by

> > neurologists

>

>

[Guest guest]

Hi ,

I forwarded that from a post on the PSP list but I recall I also posted it

several months ago and it can be found on the European PSP Society website

in their Newsletter section. Also check out the section on Related

Disorders.

http://www.pspeur.org/

Hugs,

Pam

Re: FWD: Labelling Neurodegenerative Disorders

> Pam:

>

> Could you please provide the link again to the paper discussed below. I

> must have missed it earlier and would like to send it to some family

members.

>

> Many thanks.

> > > An Extract from a Recent Bulletin of the European PSP

> > Society

> > --------------------------------------------------------------

> >

> >

> > Technological improvements in scanning techniques,

> > explosive advances

> > in knowledge of the brain and painstaking research by

> > neurologists

>

>

[Guest guest]

Hi ,

I forwarded that from a post on the PSP list but I recall I also posted it

several months ago and it can be found on the European PSP Society website

in their Newsletter section. Also check out the section on Related

Disorders.

http://www.pspeur.org/

Hugs,

Pam

Re: FWD: Labelling Neurodegenerative Disorders

> Pam:

>

> Could you please provide the link again to the paper discussed below. I

> must have missed it earlier and would like to send it to some family

members.

>

> Many thanks.

> > > An Extract from a Recent Bulletin of the European PSP

> > Society

> > --------------------------------------------------------------

> >

> >

> > Technological improvements in scanning techniques,

> > explosive advances

> > in knowledge of the brain and painstaking research by

> > neurologists

>

>