LBD and Communication 2: Problems Not Related To Language

A couple of weeks ago, the blog was about language-related problems for the Lewy partner (the person with a Lewy body disorder). Communication is a huge issue for the Lewy partner. Without good verbal skills, they often find it difficult to be understood. This week is about some of the Lewy-related problems with communication that aren’t directly connected to language.

Thinking errors. Lewy causes a variety of thinking errors. Some result in delusions as described previous blogs. Others are less obvious.

I had to be careful how I told Quentin to do something. He’d go when I said, “Don’t go…” or sit when I said, “Don’t sit.” I guess he didn’t hear the negatives. –Beth

The subconscious brain, even when healthy, tends to ignore the negative prefix to a directive—hypnotists learn that “sit” and “don’t sit” often generate the same sitting response. It is the thinking part of our brain that recognizes the negative prefix. Quentin’s weakened ability to discriminate caused him to ignore the negative parts of Beth’s directives and do the opposite of what she wanted him to do.

Muscle rigidity. Quentin may actually hear what Beth wants but his body isn't complying.

Sometimes I'll tell Quentin to lean forward and stand up. Instead he pushes back and appears to resist me.   --Beth 
Lewy bodies can cause muscles to become rigid, so that when requested to do something, a Lewy partner appears to be resisting. This is unconscious. In fact, the more the person tries to follow directions, the more rigid the muscles will get. This is also temporary, so that once the pressure is off, Quentin may do the same thing easily, as though he had simply been being difficult or contrary.

Slow thought processing. As Lewy advances, thinking gets bogged down more and more. The Lewy partner processes everything very slowly—for others, that is. For them, their mind is racing a mile a minute trying to wade through everything that’s going on. It’s like your car when it is in mud and the motor is racing but you are hardly moving.

One evening, before we knew there was anything wrong with Bill, we took my dad out to dinner. I asked Bill if I could have his butter if he didn’t want it. He ignored me, and just sat there looking at his plate. I’m easygoing and so I didn’t push; I just went on eating and visiting with my dad. Five minutes later, Bill picked up his butter and put it on my plate. Years later, after his diagnosis, I remembered that and understood that he’d been processing my question that whole time. –Marla

Marla asked a compound question; one with more than a single idea to be processed: a) Did he want it and b) Could she have it. Such questions take more time to process because each component must be considered individually. Also, Marla’s conversation with her father may have been distracting, making processing the request harder. Bill would likely have had to start over if Marla had repeated her request or asked if he had heard her.

Attention deficit. A Lewy partner gradually gets to where they cannot focus on more than one two things at a time.

I get agitated when someone tries to talk to me when there is loud music in the background. I am also beginning to notice that I hate it when there’s more than one person with me in a conversation. And don’t go talking about too many things at once. –Joel

Joel’s brain can handle only a limited amount of input at any one time. It works hard to process that. Any more just doesn’t compute.

Light sensitivity. Lewy partners aren’t just sensitive to drugs. They are often also sensitive to light. They may frown or squint. They may also simply close their eyes and appear to be bored or asleep.

LBD is not necessarily the only thing causing communication problems. If you suspect that the Lewy partner has any of these or some other similar problem, have them checked.

Poor hearing can decrease and/or distort the sound of voices, making them difficult to understand. Even a healthy person can become isolated by deafness.

Poor vision can hide and/or distort visual information. Add LBD’s visual problems such as hallucinations and partial blindness can be very distracting.

Depression and apathy may make the effort to communicate seem too much to deal with.

Pain, infections and other illnesses will take priority and remove focus away from communication. They also add stress which increases any LBD symptoms already present.
Next week, the blog will discuss the non-verbal ways that a Lewy partner communicates. And the week after that, we will finally get down to how to use this knowledge to communicate better with our loved ones. Better communication goes a long ways towards decreasing stress and the accompanying Lewy symptoms.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Stress 6: Stress Management Tools

Oops! Got ahead of myself and didn't post this last week. Rather than get too far ahead. I'm going back and publishing it this week. Next week, we'll go back to talking about communication. Like the information in the 2/7/14 blog, these tools also send calming directives to the brain. However, they usually take more training. For best effectiveness, choose one or more and make it a part of your weekly, if not daily, routine. Both caregiver and loved one can do these exercises, especially if you begin early in the journey.

The goal of these tools is to send oxygen to your brain and give you some space from what's going on in your head and in your world. Some add exercise which increases oxygen intake and provides a temporary mental escape as well. You will find that you can think more clearly and deal with issues more objectively after a session of any of these stress management tools.

Whole books are written about stress management tools. Colleges and community centers offer classes. Magazines and the internet have countless articles. Here are some suggestions to get you started. Choose one or two to learn more about. Then make them yours by using them regularly.

Muscle relaxation. Tensing and then relaxing muscles one set at a time from toes to head helps to consciously relax tense muscles. It releases the oxygen and energy held there and allows it to travel to places that need it more—like the brain. This is most easily done using an audio tape with guided muscle relaxations.

Self-guided relaxation: Think of a favorite restful place and put yourself there. Mine is sitting with my back against a shady tree near a babbling stream on a warm sunny day. Someone else might imagine they were lying on a beach near the ocean, or relaxing against a rock on top of a mountain with a gorgeous view. Combine this with some deep breathing for best effect. Guided recordings are also available for this type of relaxation.

Meditation: Sit in a comfortable position, close your eyes, breathe deeply and silently repeat a calming word or phrase like Oommm or Let it go. This prevents distracting thoughts while you relax the mind.

Yoga: Perform a series of postures and controlled breathing exercises to promote a more flexible body and a calm mind. While often strenuous, yoga can be adapted to fit the needs of a person with limited physical abilities.

Tai chi: Perform a series of slow graceful movements while practicing deep breathing. Tai chi is recommended for the elderly because the gentle movements are done standing instead of down on the floor.

With any of the above methods, also consider the following:
Be consistent. These tools need to be used regularly. If you don’t like one, try something else until you find one you enjoy. This makes it more likely that you will practice enough to make it a useful tool.
Avoid excitement. An exciting activity may be distracting, but remember that a LBD-compromised ANS may recognize excitement as danger, which will increase not decrease stress.
Practice, practice, practice. First response people like firemen or EMTs practice until their actions in a crisis are second nature. They don’t have to think about them, they just do what they’ve learned to do. Athletes do the same. They don’t become proficient swimmers or ball players or dancers without hours and hours of practice. They too need to train their muscles to act automatically. Practice your chosen stress management method every day so that when a crisis comes, you will be prepared. Practice so that you react with calming behaviors automatically.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Communication 1: Language-Related Symptoms

The symptoms that affect communication are seldom obvious at first. They show up slowly, insidiously moving in and gradually changing the way a Lewy team communicates. At first, most problems occur during times of stress. Thus, when the Lewy partner (the person with the Lewy disorder) most needs to communicate well will be when it is hardest to do.

Language difficulties and weak facial muscles may make verbal communication frustrating and sometimes so exhausting that it isn’t worth the effort. The symptoms are not always obvious. Slowing thought processes, growing attention deficits and apathy may be seen as boredom. Light sensitivities show up as sleepiness. Misinterpretations and inappropriate responses due to failed thinking filters become identified as character defects.

Word recall difficulty. We all have this “it’s on the tip of my tongue” experience at times, but it can be one of the first symptoms of LBD. People often have a feeling they know the first letter of the word or even how many syllables it has, but the word just isn’t there.

We loved to go on picnics as a family. My dad and I still do, although we usually just stay home and eat in the backyard. Recently Dad suggested, “Let’s go on a, uh…Let’s take our food outside and eat on that table out there.” “Oh,” I said. “You want to go out back and eat on the picnic table?” Dad responded, “Yeah, let’s sit at the picnic table.” --Deborah

Deborah’s dad knew he didn’t have the right word and was able to talk around it to get his message across. Once he heard the word, he could use it with understanding.
Word substitution. Sometimes people use the wrong word and don’t even realize it.

We used to laugh when Quentin said green when he meant blue or things like that. Sometimes it wasn’t so funny. He once asked me for a chair and was mad when I brought him one. He’d wanted a step-stool. That was even before we knew he had MCI. –Beth

Quentin didn’t recognize he’d used the wrong word. Usually, the substituted word or phrase will be similar in some way to the intended word. It might:

• Have a similar function or meaning: chair vs. step-stool.
• Be in the same group: green vs. blue.
• Start with the same letter, or sound: computer vs. counter.
• Rhyme: washing fishes vs. washing dishes.

It may not have any apparent connection at all. The further into the LB journey a person is—or the more stressed—the more garbled the words are likely to be.

Weakened facial muscles. Even when Parkinson’s is not involved, Lewy tends to weaken the muscles around the face and throat. At first, it tends to attack and weaken those muscles that control the voice.

Quentin’s voice got so soft I could hardly hear him but when I asked him to speak up he’d tell me he was already shouting. –Beth

Quentin was making the effort to speak loudly; it just wasn’t coming out that way. Beth may also be hard of hearing--a common problem with aging caregivers. That makes Quentin's efforts even more ineffective.

As these symptoms add up, a person will become less able to communicate verbally and start communicating with their behavior—which we all do anyway, far more than we realize.

Next week, the blog will be about Lewy-related communication roadblocks other than language.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Stress, Part 5: Changing the Body's Response

This blog is for the person with early LBD although the information works for anyone. The brain is a wonderful organ that can calm with soothing messages almost as easily as it excites with danger messages. The “almost” is because it does take a little more effort at first. Sending these calming messages isn’t as instinctual as the flight and fight reaction that leads to so much stress. However, with practice it can become second nature. The following ideas don’t take any training although they do improve with use. Practice them daily:

Use compassion. This is usually easier with others than it is with oneself. When you feel overwhelmed, ease back on your standards, slow down, and treat yourself gently.

A friend asked me to review her writing. I was glad to oblige. I’ve done a lot of proofreading in the past and I’ve always enjoyed doing it. But not this time. When there was more than a single comma in a sentence, I’d find myself going back and re-reading it over and over. I couldn’t seem to get past those commas! I called my friend and told her she’d have to find someone else. This was too stressful for me. –Jan

Jan is beginning to notice some early LBD symptoms. Commas separate thoughts or ideas. Several in a single sentence triggered her budding LBD and stopped her reading. Jan knows the importance of managing stress and so she didn’t punish herself by trying to continue to do something that had become too frustrating. She gave herself credit for trying and moved on. If you begin to feel you’ve failed, be as generous with yourself as you would be with a loved one.

Use positive thoughts. Negative messages increase anxiety and keep the ANS sending out those danger signals. Rephrase to make your experience positive. For example a problem is a challenge—something to make life more interesting. Instead of thinking, “I can’t do that anymore” tell yourself, “It won’t hurt to try.” Trying and not succeeding isn’t failure; it’s a learning experience. When you take longer to do something than in the past, don’t consider yourself too slow. Think instead, think “I have plenty of time.”

Remove negatives like can’t, from your vocabulary. Like Jan, you may find some tasks that used to be easy are now frustrating. Instead of telling yourself, “I can’t do that anymore” think, “I’m taking care of myself by eliminating unnecessary frustration.”

Listen to music. Soft, easy listening music is relaxing for most people. Our bodies will slow down or speed up to match the music. It is also a part of many stress management exercises. Be careful not to let it be distracting however.

Exercise. Besides including regular exercise in your schedule, add a little more when you feel uptight. There is a strong connection between exercise of any kind and stress reduction. It increases your feel-good endorphins, improves your mood, distracts you and becomes “meditation in motion.”

Do deep breathing. Stop whatever you are doing and take some deep breaths immediately when you begin to feel stressed. Taking slow deep breaths increases oxygen and adds to your reserves. This slows a racing brain and helps you think more clearly. You can do deep breathing anywhere, anytime. However, regular practice is also important so that when you need it, you can do it correctly. Be careful not to hyperventilate by exhaling more air than inhaled. This results in dizziness and adds to the problem instead of reducing it.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Go to The LBD Book Corner in LBDtools.com  to buy the book from Amazon. The small fee they pay us helps to support our work.