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.

The information in this article 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.