Re: Seems like this is perfect time to read this...

[Guest guest]

I have shared this with both NH my sister has been in

and you are right they don't have a clue about the

disease.

Jayn

in S GA

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http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Simply, thank you Shirley. You have touched my heart.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> 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.

>