A Friendly Reminder

[Guest guest]

A Lewy Body patient

Lewy Body symptoms make my life one of constant frustration.

There are so many things I can and want to do for myself; but at any

time, I may suddenly find I'm unable to do anything without

assistance, and at times I'm overcome with fatigue. Please be patient

and allow me a bit more time. I know the staff members are very busy,

but when you tell me " Hurry " , the stress of something even that

simple may make my symptoms even worse. If you yell at me or act

visibly irritated, I get more confused and will most likely become

very agitated. If you were to try to make a sudden change in my

routine or schedule, it would confuse me too. Please, take the time

to explain things and talk to me in a reassuring, kind compassionate

manner. When you roll your eyes or complain that I'm asking for too

much help, it makes me feel bad. I don't want to overwork anyone but

the reason I'm here is that sometimes, I really do need help. Do you

really believe I enjoy not being able to do things for myself? I use

to be very independent and never dreamed I'd ever have to ask anyone

for help.

When I wet my diaper or have a bowel movement, I'm very embarrassed.

It's a gross, dirty feeling and I'm ashamed that I'm in this

condition. Leaving me this way for hours at a time is even more

humiliating and I wish I could just die instead of having to be this

way. Sometimes I have real difficulties with simple tasks like

brushing my hair, washing, or getting to the toilet on time. It

embarrasses me that I can't handle these personal matters. I've had

Lewy body for over a year and on a good day I can hold a

conversation, feed myself and attempt to comb my own hair. But those

other days, that's when I need your help.

Often and quite unpredictably, my movements become extra slow, even

immobile. Sometimes for a short time, I literally " freeze " on the

spot. A physiotherapist can demonstrate useful strategies to help me

become unstuck. Don't push me or pull me as this may lead to a fall.

I worry a lot about falling and breaking a hip or wrist, but I want

to keep mobile and independent. I appreciate the staff understanding

this. When my body is working, I'm able to move about safely using a

walker, a wheelchair, or other aides.

Mealtimes in the dining room can be really frustrating and

embarrassing as it takes me ages to cut my food and get it to my

mouth. Sometimes it's impossible to do either. The food is often cold

before I'm half through the meal. My eyesight is so unpredictable,

sometimes I am able to see pretty well; other times I can't even make

out the food on my plate and don't know what I'm eating until it

reaches my mouth. Sometimes I can't even tell if I still have food

left on my plate. Over last year or so, I've also developed problems

with swallowing. As a result, there's always too much saliva in my

mouth and I drool. It's very embarrassing. Because of the swallowing

difficulties, I worry a lot about choking. A side effect of some of

the medications I take is a dry mouth, so I need a lot of ice water

available. The water also helps my speech and is good for the

constipation that plagues a lot of LBD patients. Sometimes it may be

difficult for me to swallow water; then, I tend to do better with

juices and other thicker liquids.

Voluntary movements sometimes take more effort for a person with Lewy

Body Disease so I get tired very easily. It's difficult for me to get

a good night's sleep, as I may need help turning over. If my

medications wear off before morning, I may awaken feeling cramped and

stiff and since I can't move naturally in bed, it's impossible to

fall back to sleep.

Sometimes I may look grouchy or uninterested. It may be I'm simply

not able to see you or hear you. But, please ask me how I'm feeling

because I still enjoy a good conversation. My speech is sometimes

difficult to understand; the words get slurred or muffled and the

volume is low because of various muscles being affected. My slowness

to respond isn't always related to my hearing problem or that my

brain is slow; sometimes it just takes awhile for the words to come

out! With a conscious effort on my part, I'm sometimes able to speak

more clearly and I appreciate the staff taking a little extra time to

listen very carefully.

Lewy Body Disease is a very lonely and boring condition. Often I feel

trapped in my own body. My clumsy hands make activities such as

crafts or games difficult, although I used to enjoy a game cards,

bingo, or Scrabble. I'd like to socialize more, to feel like a normal

human being. If someone can help me with a game of bingo or whatever,

I'd enjoy that. It's too hard for me to maneuver the pieces and

sometimes I can't even see them and my concentration is not as good

as it used to be. This really doesn't mean I wouldn't enjoy the

company if I could have some help. But I don't want to be made to

feel stupid or inadequate in front of others.

I would like nothing better than to return home and resume my

independent life. I don't enjoy depending on others for anything.

Please remember that I didn't choose to have my life turned upside

down. Your patience and understanding is the best medicine for me.

Remember that I still have feelings; I still have needs; not so long

ago, I was just like everyone else. The best thing you can do for me

now is treat me with respect. Encourage me. Don't talk over my head

as if I'm not there. I may not respond to your questions or remarks

but that doesn't mean I didn't hear you. I don't need to be put to

sleep or shoved into a corner; I need to keep as active of a life as

possible. Last but not least, please do not compare me to other

patients. This disease may have similarities to other diseases, but

it is very unique. No two patients display the same symptoms. No one

can tell from one minute to the next what my abilities will be at any

given moment, so please don't think I am being stubborn or ignorant;

the disease is running my body. I no longer have full control. There

is no longer a normal day for me.

Shirley Lay

The information in the article " Lewy Body Disease from a Patients

Point Of View " was obtained from what Shirley Lay observed from many

the LBD caregivers she corresponds with on a daily basis, some is

from her mom -a Lewy Body Disease patient-, and the rest is from what

she observed. She typed this up for a meeting at her mom's nursing

home. They had no clue what LBD was or how to treat a patient who had

it.

http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730

[Guest guest]

: This is a wonderful article, and I am

taking a copy of it to the NH, maybe one for the DON

and one for the memory care unit, and request that all

staff read it. They need to know this is what LBD is

like, and maybe they will see that what I have been

trying to tell them is not just me talking but all the

others who are suffering from this dread disease.

Thanks.

--- wrote:

> A Lewy Body patient

> Lewy Body symptoms make my life one of constant

> frustration.

>

> There are so many things I can and want to do for

> myself; but at any

> time, I may suddenly find I'm unable to do anything

> without

> assistance, and at times I'm overcome with fatigue.

> Please be patient

> and allow me a bit more time. I know the staff

> members are very busy,

> but when you tell me " Hurry " , the stress of

> something even that

> simple may make my symptoms even worse. If you yell

> at me or act

> visibly irritated, I get more confused and will most

> likely become

> very agitated. If you were to try to make a sudden

> change in my

> routine or schedule, it would confuse me too.

> Please, take the time

> to explain things and talk to me in a reassuring,

> kind compassionate

> manner. When you roll your eyes or complain that I'm

> asking for too

> much help, it makes me feel bad. I don't want to

> overwork anyone but

> the reason I'm here is that sometimes, I really do

> need help. Do you

> really believe I enjoy not being able to do things

> for myself? I use

> to be very independent and never dreamed I'd ever

> have to ask anyone

> for help.

>

> When I wet my diaper or have a bowel movement, I'm

> very embarrassed.

> It's a gross, dirty feeling and I'm ashamed that I'm

> in this

> condition. Leaving me this way for hours at a time

> is even more

> humiliating and I wish I could just die instead of

> having to be this

> way. Sometimes I have real difficulties with simple

> tasks like

> brushing my hair, washing, or getting to the toilet

> on time. It

> embarrasses me that I can't handle these personal

> matters. I've had

> Lewy body for over a year and on a good day I can

> hold a

> conversation, feed myself and attempt to comb my own

> hair. But those

> other days, that's when I need your help.

>

> Often and quite unpredictably, my movements become

> extra slow, even

> immobile. Sometimes for a short time, I literally

> " freeze " on the

> spot. A physiotherapist can demonstrate useful

> strategies to help me

> become unstuck. Don't push me or pull me as this may

> lead to a fall.

> I worry a lot about falling and breaking a hip or

> wrist, but I want

> to keep mobile and independent. I appreciate the

> staff understanding

> this. When my body is working, I'm able to move

> about safely using a

> walker, a wheelchair, or other aides.

>

> Mealtimes in the dining room can be really

> frustrating and

> embarrassing as it takes me ages to cut my food and

> get it to my

> mouth. Sometimes it's impossible to do either. The

> food is often cold

> before I'm half through the meal. My eyesight is so

> unpredictable,

> sometimes I am able to see pretty well; other times

> I can't even make

> out the food on my plate and don't know what I'm

> eating until it

> reaches my mouth. Sometimes I can't even tell if I

> still have food

> left on my plate. Over last year or so, I've also

> developed problems

> with swallowing. As a result, there's always too

> much saliva in my

> mouth and I drool. It's very embarrassing. Because

> of the swallowing

> difficulties, I worry a lot about choking. A side

> effect of some of

> the medications I take is a dry mouth, so I need a

> lot of ice water

> available. The water also helps my speech and is

> good for the

> constipation that plagues a lot of LBD patients.

> Sometimes it may be

> difficult for me to swallow water; then, I tend to

> do better with

> juices and other thicker liquids.

>

> Voluntary movements sometimes take more effort for a

> person with Lewy

> Body Disease so I get tired very easily. It's

> difficult for me to get

> a good night's sleep, as I may need help turning

> over. If my

> medications wear off before morning, I may awaken

> feeling cramped and

> stiff and since I can't move naturally in bed, it's

> impossible to

> fall back to sleep.

>

> Sometimes I may look grouchy or uninterested. It may

> be I'm simply

> not able to see you or hear you. But, please ask me

> how I'm feeling

> because I still enjoy a good conversation. My speech

> is sometimes

> difficult to understand; the words get slurred or

> muffled and the

> volume is low because of various muscles being

> affected. My slowness

> to respond isn't always related to my hearing

> problem or that my

> brain is slow; sometimes it just takes awhile for

> the words to come

> out! With a conscious effort on my part, I'm

> sometimes able to speak

> more clearly and I appreciate the staff taking a

> little extra time to

> listen very carefully.

>

> Lewy Body Disease is a very lonely and boring

> condition. Often I feel

> trapped in my own body. My clumsy hands make

> activities such as

> crafts or games difficult, although I used to enjoy

> a game cards,

> bingo, or Scrabble. I'd like to socialize more, to

> feel like a normal

> human being. If someone can help me with a game of

> bingo or whatever,

> I'd enjoy that. It's too hard for me to maneuver the

> pieces and

> sometimes I can't even see them and my concentration

> is not as good

> as it used to be. This really doesn't mean I

> wouldn't enjoy the

> company if I could have some help. But I don't want

> to be made to

> feel stupid or inadequate in front of others.

>

> I would like nothing better than to return home and

> resume my

> independent life. I don't enjoy depending on others

> for anything.

> Please remember that I didn't choose to have my life

> turned upside

> down. Your patience and understanding is the best

> medicine for me.

> Remember that I still have feelings; I still have

> needs; not so long

> ago, I was just like everyone else. The best thing

> you can do for me

> now is treat me with respect. Encourage me. Don't

> talk over my head

> as if I'm not there. I may not respond to your

> questions or remarks

> but that doesn't mean I didn't hear you. I don't

> need to be put to

> sleep or shoved into a corner; I need to keep as

> active of a life as

> possible. Last but not least, please do not compare

> me to other

> patients. This disease may have similarities to

> other diseases, but

> it is very unique. No two patients display the same

> symptoms. No one

> can tell from one minute to the next what my

> abilities will be at any

> given moment, so please don't think I am being

> stubborn or ignorant;

> the disease is running my body. I no longer have

> full control. There

> is no longer a normal day for me.

>

> Shirley Lay

> The information in the article " Lewy Body Disease

> from a Patients

> Point Of View " was obtained from what Shirley Lay

> observed from many

> the LBD caregivers she corresponds with on a daily

> basis, some is

> from her mom -a Lewy Body Disease patient-, and the

> rest is from what

> she observed. She typed this up for a meeting at her

> mom's nursing

>

=== message truncated ===

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