Conference: Vision and Dementia

[Guest guest]

Thank you Barb. I am right there with you on this one. I can see

the confusion that my husband experiences and the short term memory

problems at times. You are correct, a better definition needs to be

given to this. As for the vision, well that simply makes sense to

me, if the brain stem is being affected than there can easily be some

problems with the muscles in the eyes. My husband sees double and

triple most of the time. He has had prisms put on his glasses but

that didn't ever really solve the problem. It doesn't sound like one

can definitively say that a particular problem does NOT happen with

MSA. MSA is very complex and seems to affect each person differently

as to the nature and severity of symptoms. Also, if people are

always told a certain symptom is not related to MSA, could it be they

are not reporting symptoms or only reporting the ones they are told

are from MSA? We initially did not report vision problems to our

neurologist because we thought it was " something else " and unrelated.

Only when I mentioned it here did I find out that many others suffer

from the same thing.

Jan

> My sons and I were fortunate to attend the Chicago conference, and

> enjoyed meeting the folks. I wish we could have met everyone.

>

> With great respect to Bill, I disagree that " dementia " only occurs

with

> infection in MSA. First of all, when we talk about " dementia " , it

can

> mean a lot of things. I notice that many people suffer

from " confusion " ,

> including my husband. Would it be hard to envision that frequent

bouts of

> low blood pressure and cerebral anoxia might promote confusion and

> short-term memory loss? Would it be hard to surmise that this might

> progress as time goes on?

> If by " dementia " , one means Alzheimer's disease, that's a different

> entity, and if the doctors mean that, they should say so.

>

> I think a person can still have reasoning capability and retain

> experience of a lifetime and still occasionally have memory loss

and be

> confused.

>

> The medical profession's profession that there is no " dementia " in

MSA

> has patients and caregivers scratching their heads. (I saw some

> scratching of heads at the Conference.) This point needs to be

cleared

> up, doctors.

>

> The other profession that there are no or minor visual disturbances

also

> produces head-scratching.

> " Among structures affected " , as our brochure says, " are the

oculomotor

> and Edinger-Westphal nucleus " . The oculomotor nucleus controls the

three

> pairs of eye muscles for each eye, and the Edinger-Westphal nucleus

> controls the size of the pupil and the shape of the lens. If the

muscles

> of the eyes don't work correctly, certainly vision can be a

problem, even

> if your retina is perfectly fine.

> Please, let's not continue this myth about vision.

>

> Chuck goes to an ophthalmologist, who does treat his vision

problems

> well. Hurrah!

>

> I have many other thoughts related to the conference, but I have to

go

> clean three bathrooms, and probably-------wash my hair.

>

> Barbara Woodford

>

> P.S. Doctors of conference, thank you for your care and time.

[Guest guest]

Hi gang,

I want to chime in on the vision and confusion thing.

Rob had vision problems early on and was referred to a neuro-

ophthalmologist who determined he had become nearsighted in one eye and

farsighted in the other, most likely as a result of the effect of MSA on the

muscles of the eyes. He now has glasses which help but do not eliminate the

problem.

There have been many observations on the list about how MSA patients cannot

tolerate bright light. This appears to be because the autonomic nervous

system which controls the dilation of the pupils does not react quickly

enough to contract when the patient is in the sun. I believe that the

dilation of the pupils has an impact on the MSA patient's overall vision,

since too much or too little light makes it difficult to read or do much of

anything. I have noticed recently that Rob's night vision has deteriorated,

which I believe is due to his pupils failing to dilate in a darkened room.

Our bedroom/bathroom area now has three night lights, so he can follow from

one the other to find the bathroom.

The other thing is the effect of medication. Rob, like many MSA patients,

has been on increasingly high levels of sinamet. He's had some problems

with seeing things that are not there, and I think that's due to the

sinamet, not the MSA per se.

Weighing in on the confusion problem, I fully agree that this is a BIG

issue. Rob gets very confused when his blood pressure drops, and recently I

think the medications are adding to the confusion. I think the vision thing

also adds to the confusion, as I would certainly be disoriented if I was

always " in the dark " or otherwise visually impaired. Although we've been

told that short term memory is not affected, I think that's a technical

neuropsych definition of short term memory. The impairment of working

memory is one even the experts agree upon, and for most of us lay folks that

translates into short term memory problems and confusion. Of course this is

further complicated by the fact that it only happens sometimes, unlike

Alzheimer's, which is a pretty much full time problem. What we have been

told is that unlike Alzheimer's, Rob's memory is fully in tact. He " just "

has problems adding new information and retrieving old information. While I

suppose this is of some comfort, the impact on the his ability to function

is STILL impaired.

That's my two cents!

Carol & Rob

Lexington, MA

Re: Conference: Vision and Dementia

> Thank you Barb. I am right there with you on this one. I can see

> the confusion that my husband experiences and the short term memory

> problems at times. You are correct, a better definition needs to be

> given to this. As for the vision, well that simply makes sense to

> me, if the brain stem is being affected than there can easily be some

> problems with the muscles in the eyes. My husband sees double and

> triple most of the time. He has had prisms put on his glasses but

> that didn't ever really solve the problem. It doesn't sound like one

> can definitively say that a particular problem does NOT happen with

> MSA. MSA is very complex and seems to affect each person differently

> as to the nature and severity of symptoms. Also, if people are

> always told a certain symptom is not related to MSA, could it be they

> are not reporting symptoms or only reporting the ones they are told

> are from MSA? We initially did not report vision problems to our

> neurologist because we thought it was " something else " and unrelated.

> Only when I mentioned it here did I find out that many others suffer

> from the same thing.

> Jan

>

>

> > My sons and I were fortunate to attend the Chicago conference, and

> > enjoyed meeting the folks. I wish we could have met everyone.

> >

> > With great respect to Bill, I disagree that " dementia " only occurs

> with

> > infection in MSA. First of all, when we talk about " dementia " , it

> can

> > mean a lot of things. I notice that many people suffer

> from " confusion " ,

> > including my husband. Would it be hard to envision that frequent

> bouts of

> > low blood pressure and cerebral anoxia might promote confusion and

> > short-term memory loss? Would it be hard to surmise that this might

> > progress as time goes on?

> > If by " dementia " , one means Alzheimer's disease, that's a different

> > entity, and if the doctors mean that, they should say so.

> >

> > I think a person can still have reasoning capability and retain

> > experience of a lifetime and still occasionally have memory loss

> and be

> > confused.

> >

> > The medical profession's profession that there is no " dementia " in

> MSA

> > has patients and caregivers scratching their heads. (I saw some

> > scratching of heads at the Conference.) This point needs to be

> cleared

> > up, doctors.

> >

> > The other profession that there are no or minor visual disturbances

> also

> > produces head-scratching.

> > " Among structures affected " , as our brochure says, " are the

> oculomotor

> > and Edinger-Westphal nucleus " . The oculomotor nucleus controls the

> three

> > pairs of eye muscles for each eye, and the Edinger-Westphal nucleus

> > controls the size of the pupil and the shape of the lens. If the

> muscles

> > of the eyes don't work correctly, certainly vision can be a

> problem, even

> > if your retina is perfectly fine.

> > Please, let's not continue this myth about vision.

> >

> > Chuck goes to an ophthalmologist, who does treat his vision

> problems

> > well. Hurrah!

> >

> > I have many other thoughts related to the conference, but I have to

> go

> > clean three bathrooms, and probably-------wash my hair.

> >

> > Barbara Woodford

> >

> > P.S. Doctors of conference, thank you for your care and time.

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

My sons and I were fortunate to attend the Chicago conference, and

enjoyed meeting the folks. I wish we could have met everyone.

With great respect to Bill, I disagree that " dementia " only occurs with

infection in MSA. First of all, when we talk about " dementia " , it can

mean a lot of things. I notice that many people suffer from " confusion " ,

including my husband. Would it be hard to envision that frequent bouts of

low blood pressure and cerebral anoxia might promote confusion and

short-term memory loss? Would it be hard to surmise that this might

progress as time goes on?

If by " dementia " , one means Alzheimer's disease, that's a different

entity, and if the doctors mean that, they should say so.

I think a person can still have reasoning capability and retain

experience of a lifetime and still occasionally have memory loss and be

confused.

The medical profession's profession that there is no " dementia " in MSA

has patients and caregivers scratching their heads. (I saw some

scratching of heads at the Conference.) This point needs to be cleared

up, doctors.

The other profession that there are no or minor visual disturbances also

produces head-scratching.

" Among structures affected " , as our brochure says, " are the oculomotor

and Edinger-Westphal nucleus " . The oculomotor nucleus controls the three

pairs of eye muscles for each eye, and the Edinger-Westphal nucleus

controls the size of the pupil and the shape of the lens. If the muscles

of the eyes don't work correctly, certainly vision can be a problem, even

if your retina is perfectly fine.

Please, let's not continue this myth about vision.

Chuck goes to an ophthalmologist, who does treat his vision problems

well. Hurrah!

I have many other thoughts related to the conference, but I have to go

clean three bathrooms, and probably-------wash my hair.

Barbara Woodford

P.S. Doctors of conference, thank you for your care and time.

[Guest guest]

Hi All: Bob has both Vision and (sort of like) Dementia problems. I say sort of --because it comes and goes and occasionally he says words of wisdom,unlike my Dad who died more than 14 years ago with complications of Alzheimers (Pneumonia). Some of Bob's vision problems may not be related to MSA, as he was slightly far-sighted to begin with and he had the glaucoma problem which was treated with Laser and hopefully controlled. Physically my Father was in better shape than Bob is but I can see the difference in both re: dementia. When Bob's vision problems began he started using "Talking Books" as he could not seem to follow along with the written word. This was quite early before he was diagnosed with MSA - I think it was when they thought he had Parkinsons. The Dementia and Confusion problems I like to think are related to his meds and his illness. He has also in the past seen things that are not there. Bob is failing slowly but this weekend sort of went downhill and had increasing problems quickly so Monday I had his urine tested and sure enough he had a UTI and is now on medication and is doing a little better. With MSA it seems every time they have an infection or some other physical complaint - they never come back all the way. It is like losing a little bit every time.

Not to change the subject but - I could write a book on toilet problems and got quite a laugh on your comments and coping mechanisms. I can relate to so many of your problems. When Bob was 1st sick we slept upstairs and used that bathroom. He sat at all times when using the toilet because of OH problems etc. so he must of hit the toilet so hard it developed a small leak in the bottom which eventually leaked into the ceiling below - which had to be repaired after just being painted. The toilet had to be taken up and resealed. It is an older one and good and flushes well but the Torpedoes - which I break up into smaller Cannon Balls - are no match for anything that "American Standard" makes. Now we are downstairs and the toilet is a newer one - consequently - slower flowing. He stiffens up and hits it so hard that the seal between the back and seat has had to be replaced. Of course I didn't discover it until I was downstairs in the basement laundry room and I thought it was raining slightly inside. I keep a Wire Coathanger (which is reshaped to specs) in the cabinet next to the toilet to break things up - re Torpedoes into small Cannon Balls. I keep all kinds of cleaning products and sprays, brushes etc. to keep it all under control ( sort of).

Carol: I think I remember you mentioned a Boston meeting for October, but I can't find it in my Filing Cabinet. I'm still not Computer Savvy - someday when I have more time - I keep saying. I must have lost it in Cyber Space and I'm not good retrieving things. Maybe you could send me a little reminder. I would appreciate it.

The best to you all who keep trying every day.

Sincerely, Pat from Framingham

[Guest guest]

Putting my two cents in on the topic of dementia(boy thats one ugly

word). My wife is early on in the diease. She still walks with some

difficulty. However, there have been memory problems and confusion

for at least 3 years now. And she takes no medication other than for

her bladder problems. So my wife's dementia(still hate that word) can

only be attributed to MSA. She is 53 years old.

Dick

[Guest guest]

Dick,

Okay, I agree fact that MSA patients suffer from confusion (I can't bring

myself to use the " d " word).

BUT... You should be aware that both of the two most often used medications

for bladder problems (ditropan and detrol) can cause confusion as a side

effect. If the mental problems are significant you might consider (after

consultation with your wife's physician) trying a medication holiday and

seeing if the problem gets any better.

Carol & Rob

Lexington, MA

Re: Conference: Vision and Dementia

> Putting my two cents in on the topic of dementia(boy thats one ugly

> word). My wife is early on in the diease. She still walks with some

> difficulty. However, there have been memory problems and confusion

> for at least 3 years now. And she takes no medication other than for

> her bladder problems. So my wife's dementia(still hate that word) can

> only be attributed to MSA. She is 53 years old.

>

> Dick

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Pat,

Thanks for reminding me to send out the meeting notice! I had mentioned it before in the notes from the last meeting, but it was time to send out the real thing!

Carol

Re: Re: Conference: Vision and Dementia

Hi All: Bob has both Vision and (sort of like) Dementia problems. I say sort of --because it comes and goes and occasionally he says words of wisdom,unlike my Dad who died more than 14 years ago with complications of Alzheimers (Pneumonia). Some of Bob's vision problems may not be related to MSA, as he was slightly far-sighted to begin with and he had the glaucoma problem which was treated with Laser and hopefully controlled. Physically my Father was in better shape than Bob is but I can see the difference in both re: dementia. When Bob's vision problems began he started using "Talking Books" as he could not seem to follow along with the written word. This was quite early before he was diagnosed with MSA - I think it was when they thought he had Parkinsons. The Dementia and Confusion problems I like to think are related to his meds and his illness. He has also in the past seen things that are not there. Bob is failing slowly but this weekend sort of went downhill and had increasing problems quickly so Monday I had his urine tested and sure enough he had a UTI and is now on medication and is doing a little better. With MSA it seems every time they have an infection or some other physical complaint - they never come back all the way. It is like losing a little bit every time. Not to change the subject but - I could write a book on toilet problems and got quite a laugh on your comments and coping mechanisms. I can relate to so many of your problems. When Bob was 1st sick we slept upstairs and used that bathroom. He sat at all times when using the toilet because of OH problems etc. so he must of hit the toilet so hard it developed a small leak in the bottom which eventually leaked into the ceiling below - which had to be repaired after just being painted. The toilet had to be taken up and resealed. It is an older one and good and flushes well but the Torpedoes - which I break up into smaller Cannon Balls - are no match for anything that "American Standard" makes. Now we are downstairs and the toilet is a newer one - consequently - slower flowing. He stiffens up and hits it so hard that the seal between the back and seat has had to be replaced. Of course I didn't discover it until I was downstairs in the basement laundry room and I thought it was raining slightly inside. I keep a Wire Coathanger (which is reshaped to specs) in the cabinet next to the toilet to break things up - re Torpedoes into small Cannon Balls. I keep all kinds of cleaning products and sprays, brushes etc. to keep it all under control ( sort of). Carol: I think I remember you mentioned a Boston meeting for October, but I can't find it in my Filing Cabinet. I'm still not Computer Savvy - someday when I have more time - I keep saying. I must have lost it in Cyber Space and I'm not good retrieving things. Maybe you could send me a little reminder. I would appreciate it. The best to you all who keep trying every day. Sincerely, Pat from Framingham If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Dick,

There are related disorders such as LDB and CBGD which do have dementia

as a symptom. Have they tried Aricept for the dementia?

Take care, Bill Werre

==================================

dbarbeau wrote:

>Putting my two cents in on the topic of dementia(boy thats one ugly

>word). My wife is early on in the diease. She still walks with some

>difficulty. However, there have been memory problems and confusion

>for at least 3 years now. And she takes no medication other than for

>her bladder problems. So my wife's dementia(still hate that word) can

>only be attributed to MSA. She is 53 years old.

>

>Dick

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Barbara,

I go by what my doctor calls dementia:

<

neurology

, psychiatry

> An organic

mental

disorder

characterised by a

general

loss of intellectual

abilities

involving impairment

of memory

, judgment

and abstract

thinking

as well

as changes

in personality

..

It does not include loss of intellectual functioning caused by clouding

of consciousness

(as in delirium

) nor that caused by

depression

or other functional

mental

disorder

(pseudodementia

). Dementia may be caused by a

large

number

of conditions

, some reversible

and some progressive

, that cause

widespread cerebral

and damage

or dysfunction

.. The most common cause is

Alzheimer's disease

, others are

cerebrovascular disease

(multi infarct

dementia),

central nervous system

infection

, brain

trauma

or tumours

, pernicious

anaemia

, folic acid

deficiency

, Wernicke Korsakoff

syndrome

,

normal pressure hydrocephalus

, and, neurological

diseases

such as

Huntington disease

, multiple

sclerosis

and

Parkinson's disease

..

Here is a better description of the problems:

The following piece is a modified version

of “Memory and Aging” written by Dr. V. Mc

There are times in our

lives when memory problems will inevitably occur.

In fact, memory problems are a very common complaint for elders and even for some younger people. But ironically, to preserve our sanity, it is important to understand how our brains are supposed

to work for normal aging and the signals that indicate abnormal

dysfunction or brain disease.

There are forms of memory loss that are normal with aging and there are those due to cognitive impairment, associated with a brain incident or dementia.

True memory problems are indicated by change. Someone who was never able to remember names or numbers throughout their life will

not be able to remember them in their later years either.

Therefore, such issues are not indicative of anything, except

a lifetime of poor ability to remember these types of details.

What might indicate a problem, however, is a change in one’s

ability to remember names or numbers.

NORMAL MEMORY FUNCTIONS

include:

recall of events and details of the past (long ago and recently);

crystallized abilities, such as word knowledge, vocabulary, and language;

understanding the relationships of information

flow and orders of events;

appropriate perception of location and time;

normal counting abilities; and

comprehension of the functional nature of things (i.e. keys, door locks, utensils, etc.).

BENIGN AGE-RELATED INABILITIES

may include:

difficulty learning new words, definitions or new languages;

trouble with in-depth memory processing (elders tend to process new memory in superficial ways);

poor recall of details;

memory loss involving misplacing of objects;

and

occasional confusion regarding locations and time-related events.

It is all right to occasionally have trouble remembering a person’s name. This happens all to all of

us, all the time. It is when you develop a need to make up

names for people close or ordinary objects that could indicate

a problem.

“Remember that the older we get, the more we have to remember.”

SIGNS THAT INDICATE SOMETHING MAY BE REALLY WRONG (cognitive

impairment or dementia) include:

poor decision-making;

inability to calculate simple functions, such as percentages or the inability to balance a checkbook;

verbal stumbling, stammering, and searching for words when talking;

spatio-temporal dysfunction, for example getting lost in an otherwise familiar neighborhood or not knowing what year, month or day it is;

failure to recognize common, everyday items, such as recalling

what keys are used for, and

inability to complete ordinary tasks, such as operating a door knob or storing the iron in the freezer.

Signs of dementia are not limited to only memory related occurrences. Typical of dementia is both cognitive

dysfunction and behavioral dysfunction.

SOME BEHAVIORAL SIGNS OF DEMENTIA

may be:

slower reaction time

reluctance or resistance to try new things or go to new places,

insensitivity to disturbing occurrences, lack of emotion

ease of being provoked over silly things,

loss of temper at inappropriate intervals,

irrational anger,

depression and other mood swings related

to bipolar problems,

increased self-absorption and being self-centered,

acting childish,

socially inappropriate behavior

insensitivity to others and impatience,

avoidance of situations where failure

may occur,

uncharacteristic suspicions, jealousy,

delusions, psychotic behavior or hallucinations,

change in hygiene practice - cleanliness, failure to attend to incidences of incontinence, lacking care for proper dress and

using dirty underwear

inability to properly get dressed, including inappropriate

order of clothing (underwear on the outside or wearing none

at all),

repetitive motions such as leg shaking, tapping on a table, scratching, or attempting to wipe or clean nostrils when nothing is dripping, etc.

Also, it is unusual for people with dementia to exhibit only one or a few of these cognitive and behavioral dysfunctions. And finally,

these conditions must be chronic, not sporadic or occasional,

though they may vary in degree, being worse at some times

compared to others.

Needless to say, the only real way to know more definitively whether your problem relates to a neurological

condition or mere flightiness is to talk to a physician who

is knowledgeable and experienced in detecting and diagnosing

such conditions.

* * *

My mom had (and I have) the problem of calling people by the wrong name

) but above it says that is "normal" for us old folks )

Take care, Bill Werre

============================================

woodford wrote:

My sons and I were fortunate to attend the Chicago conference, and enjoyed meeting the folks. I wish we could have met everyone.With great respect to Bill, I disagree that "dementia" only occurs with infection in MSA. First of all, when we talk about "dementia", it can mean a lot of things. I notice that many people suffer from "confusion", including my husband. Would it be hard to envision that frequent bouts of low blood pressure and cerebral anoxia might promote confusion and short-term memory loss? Would it be hard to surmise that this might progress as time goes on?If by "dementia", one means Alzheimer's disease, that's a different entity, and if the doctors mean that, they should say so. I think a person can still have reasoning capability and retain experience of a lifetime and still occasionally have memory loss and be confused. The medical profession's profession that there is no "dem

entia" in MSA has patients and caregivers scratching their heads. (I saw some scratching of heads at the Conference.) This point needs to be cleared up, doctors.The other profession that there are no or minor visual disturbances also produces head-scratching."Among structures affected", as our brochure says, "are the oculomotor and Edinger-Westphal nucleus". The oculomotor nucleus controls the three pairs of eye muscles for each eye, and the Edinger-Westphal nucleus controls the size of the pupil and the shape of the lens. If the muscles of the eyes don't work correctly, certainly vision can be a problem, even if your retina is perfectly fine.Please, let's not continue this myth about vision.Chuck goes to an ophthalmologist, who does treat his vision problems well. Hurrah!I have many other thoughts related to the conference, but I have to go clean three bathrooms, and probably-------wash my hair.

br>Barbara WoodfordP.S. Doctors of conference, thank you for your care and time.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe