Friday, July 25, 2014

Update: Nearing the End of the Journey

Since we are traveling right now, and learning to use our new (to us) motor home is taking up most of our time, we are re-publishing some of our most popular blogs with a few updates added. This one is actually the most popular by far:

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:

Cognition degeneration: Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time. Update: This is also true for many other dementias, such as Frontoltemporal dementia (FTD) and Vascular dementia (VaD). 

  •  LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well. Update: This is true for both types of LBD: Dementia with Lewy bodies and Parkinson's disease with Dementia.
  • FTD does not fluctuate but cognition does not degenerate as quickly as emotional abilities, especially empathy.
  • VaD degenerates only with each stroke event. However, the strokes can be so small and so often that the degeneration appears to be progressive. 
Verbal communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding.

  • LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking. The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.

Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and The Caregiver’s Guide to Lewy Body Dementia. Update: There is a whole chapter about using communication in our new book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

  • LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.

Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.

General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.

  • LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore,complications like pneumonia, urinary tract infections or falls can be life threatening. Good patient care and early detection of problems becomes very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease
Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.

  • LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

Friday, July 18, 2014

Using Alternative Therapies Instead of Drugs

For a long time we’ve advocated using a variety of alternative therapies with LBD and other degenerative disorders. The reason is simple. They are usually safer than drugs and are often more effective as well. That sounds like a win-win situation to us!

Why do alternative therapies tend to be safer than drugs?

First, please know that we don’t advocate avoiding drugs altogether. Some, such as Exelon or Aricept, are helpful. However, many are not. The most dangerous are anti-anxiety and anti-psychotic drugs. Visit for links to several lists of Lewy-dangerous drugs. People with—or AT RISK for—LBD can develop severe sensitivities to these drugs. Then, a normal dose acts as an overdose, with symptoms such as increased dementia, motor problems and/or heavy sedation. Although a person with PD may not have been sensitive to these drugs in the past, the likelihood that they will be increases as the Lewy bodies increase in their brain. The scary part is that a person may not know that they have become sensitive until they have a reaction—and then it can be too late.

Many Lewy body disorder symptoms fall into the psychotic or anxiety category: anxiety itself, depression, paranoia, hallucinations, sleep difficulties, and more. Stress also becomes an issue because the pressure involved in everyday dealing with a Lewy body disorder depletes a person’s ability to handle stress. Yet the drugs most commonly used for all of these problems are all on those “Lewy-dangerous” lists. Incidentally, many have also been deemed dangerous for anyone one over the age of 65, even if they don’t have LBD.

Alternative therapies (ATs) help us use our own resources to deal with the above problems. They don’t add chemicals to the body, don’t break the skin, and don’t conflicts. Yet they can be very effective. It is amazing what we can make our bodies do with a little direction. And that’s what alternative therapies do. For instance, if your muscles feel tense, you can take a pill which will make your muscles relax. However, you may also have side effects. Or you can use massage, which guides your muscles into relaxing themselves without side effects.

Why are alternative therapies often more effective than drugs?

Even when the drugs do not cause unwelcome side effect, they are often not as effective as alternative therapies. They only treat the symptom. They don’t develop your ability to deal with the problem. In fact, it is just the opposite. When you use a pill, it takes over and does the work that the body would normally do. That’s fine if the body really can’t do the job, as for instance, produce insulin. Then the drugs are lifesavers. However, in most cases, we just need a boost—a little help. The body is all about conservation of effort. If it becomes used to a pill doing a job, it will view an internal effort to do the work redundant—and may “forget” how. With alternative therapy, the goal is to provide a little assistance and guidance so that the body can continue to do its own job.

Anti-anxiety pills cause chemical changes in the body that cause the muscles relax—that is, they do the job for you. Eventually, the body may “forget” how to relax without their help. Massage is more natural and simply guides the muscles into the right formations and helps them to do their own work.

Other “alternative therapies” help the body use and main its resources. Physical activity is a great example of this. You may not think of exercise as an “alternative therapy” but it fits the description perfectly: It helps the body use internal resources to maintain its health without the use of drugs. In fact, most clinicians will tell you that exercise is more effective than any dementia drug.

Speech, physical or occupational therapy also fits this definition. It is well known that they can all be very beneficial with LBD, PD, AD and many other degenerative disorders. AT can also refer to a variety of stress management techniques from acupressure to yoga. Massage, deep breathing and positive thinking are also fairly well accepted forms of stress management. Meditation, brain stimulation and kinesiology are types of alternative therapies that are less well known. Essential oils, sound/vibration, puzzle, art and fractal therapies are some other forms of alternative therapies. These last types along with massage therapy are described further on We will be using these therapies in our workshops that will start in the fall.

Several types of alternative therapies are also discussed in Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on

Friday, July 11, 2014

A Special For Our Blog Readers Only!

Click here to buy

We are proud to announce that our newest book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, is being well received by readers. In celebration, we are offering it to our blog readers at a special discount. Just click on the photo to go to buy this book that normally sells for $22.95 for only $19.95. All we ask in return is that you submit a review to Amazon.

Managing Cognitive Issues adds to the information in A Caregiver's Guide. Like the Guide, it is easy to read, filled with facts and illustrated with personal experiences. It describes the symptoms that precede LBD and offers many ways to slow the progress of this degenerative disorder using alternative therapies, and limiting the use of Lewy-dangerous drugs.

Click here to buy Trio

If haven’t yet read A Caregiver’s Guide to Lewy Body Dementia, or if you want another one for a gift, Whitworth Trio. This includes Managing Cognitive Issues, A Caregiver’s Guide, and Riding a Rollercoaster with Lewy Body Dementia, a Manual for Staff. This set of three books by Helen and James Whitworth are worth $62.95 separately but for a limited time you can get them all for only $49.95

A Caregiver’s Guide to Lewy Body Demetnia, published in 2010, is a excellent reference book. This book received a Caregiver Friendly award from and Today's Caregiver magazine in 2012. It is usually on Amazon’s top ten list of books about Parkinson's, and top 100 about dementia (that's a much larger category). Just recently, it was Alzheimer’s Weekly and Dementia Weekly’s Book of the Week  in May, 2014.

Riding a Rollercoaster with Lewy Body Dementia, published in 2009, was our very first book about LBD. The information in it is very similar to that in the Guide, except that it is directed towards staff rather than family. Since 2011, it has not been is available except as part of our LBD Training Kit. People do continue to ask for it however, and so to celebrate our new book, we have included it in our Trio. Keep the first two for yourself and consider giving this book to a helper or care facility to help them provide more knowledgeable care to your loved one.

Read more about these books and others on the LBDtools website.

Friday, July 4, 2014

More About Lewy Bodies

By now, most of us know that Lewy bodies cause Lewy body dementia (LBD). They also cause Parkinson’s disease (PD) and REM Sleep Behavior Disorder (RBD). All of these are “Lewy body disorders.” Which one a person has depends on where the Lewy bodies are in the brain. Lewy bodies migrate and so a person may start out with RBD, then develop PD and go on to get LBD eventually. Of course, a person can also start out with LBD and never have many movement issues. See the 3/28/14 blog for more about these specific disorders. This blog is about Lewy bodies themselves and how they come about. (Special thanks to the gentleman in an Everett WA support group who asked questions about alpha synuclein and its normal function in the body. It sent us searching and this is the result of that search.)

What are Lewy bodies? They are clusters of proteins called alpha synuclein that have become damaged. Usually, when a protein is damaged, it is just sluffed off without a problem. But in this case, they become toxic. These toxic clusters look like microscopic round “bodies.” The more Lewy bodies a person has, the more symptoms they are likely to have and the more severe the symptoms will be.

What is alpha synuclein and what is its function? This protein is abundant in the brain. It is found in the tips of neurons, where it facilitates in the release of neurotransmitters, such as dopamine and acetylcholine.

What are the functions of dopamine and acetylcholine? Dopamine in the mid-brain helps to control fine movement and acetylcholine in the outer part of the brain helps to control cognitive skills such as thinking and planning.

What happens when alpha synuclein becomes damaged? The release of neurotransmitters is impeded. Depending on the neurotransmitter involved, movement or cognitive abilities or both can be affected. In addition, the neurons weaken and eventually die, which further limits the brain’s reserves of these neurotransmitters.

What causes alpha synuclein to become damaged and turn into Lewy bodies? No one knows for sure. However, experts believe that it is a combination of genetics and environmental toxins. For instance, farmers, who have been exposed to insecticides and other dangerous chemicals, are at a higher than normal risk of Lewy body disorders.

How can you identify Lewy bodies? Until recently, the only totally accurate way was via autopsy. That’s why we recommend brain donations. (See the 4/14/14 blog.) Other methods are becoming possible, but they are still too expensive for the average person and even then, are not available except in teaching or research facilities. However, Lewy –savvy neurologists can use some basic cognitive and hand-eye coordination tests along with a medical history of symptoms to identify Lewy body disorders accurately more than 90% of the time, when compared later with autopsies.

What can a person do to keep the Lewy bodies from spreading? You can’t—but you CAN slow them down a lot by living a healthy, positive, low-stress lifestyle and avoiding Lewy-dangerous drugs. See Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on for more about slowing down these progressive disorders and improving one’s quality of life.

Friday, June 27, 2014

Summer Travel

This time of the year many of us like to travel. Most retired folks don’t travel as much as we do, but many travel even more—and go a lot further. Even mild dementia can make traveling stressful. Almost by definition, it involves change and change is the Lewy partner’s, i.e., the person with Lewy’s bug-a-boo. We tend to go the same places each summer and that’s great for anyone with dementia too. We all know that familiarity decreases stress. However, sometimes you both really want to go somewhere different. Maybe it is someplace you’ve always wanted to go and just haven’t made it yet. Maybe it is to a special event like a grandchild’s graduation. Travel is possible. Here are a few of the ways to make it easier listed in our new book, Managing the Cognitive Issues in Parkinson’s and Other Lewy Body Disorders:

Go together. Lewy partners should never travel alone, even if they feel very able to do so. LBD fluctuates greatly. Low levels can appear just when clarity is needed most—when the stress is at its worst. Someone must go along to assist during the rough spots. Assure the Lewy partner that this is being smart, not helpless.

Plan, plan, plan. The more you plan, the fewer surprises, the less stress. Plan ways to avoid extremes and add familiarity and comfort. If going by car, plan short trips to avoid tiredness (probably no more than two or at most three hundred miles a day). Pack extra clothes for warmth. Take known routes whenever possible. Consider emergencies that might come up and how to deal with them. Talk to the doctor about extra medications.

Do the nitty-gritty stuff. Even when a Lewy partner is functioning well, the truth is that you will probably have to do most of the planning and initiating. A Lewy partner’s challenge is no longer making things happen but simply to keep doing.

Plan as a team. Yes, you will take on the responsibility for making sure everything runs smoothly but don’t let Lewy partner opt out. Include him in on the decisions. Even if he forgets the details, his sense of involvement will remain. The trip will be less stressful—and more fun.

If you fly, buy travel insurance and be prepared to use it. If the Lewy partner starts out feeling paranoid or frightened when getting on the plane, it isn’t going to get better. Get off. DO NOT travel unless both of you feel well. It will almost assuredly make the disorder worse—and with the added stress, it may not bounce back. Stay home and “de-stress.” Then try again.

Exercise. Traveling can be very confining and no one may get much exercise. Make a point of stopping often to walk around when traveling by auto. If going by air, spend time in the airport walking in the less populated areas or even outside. This will help to refresh you and avoid stress.

For more about traveling and other activities with your Lewy partner, read our book. You can get it from our website,

Friday, June 20, 2014

Caregiving Choices

In the caregiver support groups that we attend, how to care for a loved one is always a topic. Pat Snyder, author of Treasures in the Darkness, has opted for home care, with adult day care and full time assistance when her husband, John, is home. The daycare gives him some social exposure and Pat some alone time. The additional caregivers make it safe for Pat to keep John in a home, which incidentally they renovated to be very, very accessible.

About the full-time caregivers, she says, “Yes, they sit a lot. But my health is in jeopardy if I try to lift him or if I am up all night when Lewy appears. And with Lewy's isolation issue, it is actually nice to have company more here at the house. They are good people. So my bit of wisdom is this: The money that was to be there for me later is being used now to keep me in good enough health to have a chance for a life after Lewy. Also John is calmer, less stressed with fewer symptoms with one-on-one care, and I am able to rest and not be constantly traumatized by Lewy's demands.” You can read more about Pat and John’s journey here.

Sue, wanted to take care of her father at home but eventually opted for residential. “We made the decision together. During a Good Time, a time of more alertness, I told him they could offer him things I couldn’t—and it was true. Mainly, I was afraid for his safety and what would happen if he fell—again. I’m glad we made the move when we did—when it was “we” and not just me, making the decision. I think it really made a difference in his acceptance of his new home. He actually seems to like it there! He doesn’t always know their names but there is something about certain ones that he seems to relate to. Maybe it is the feelings they generate. Feelings don’t disappear like memory does and the staff there really are very caring people.

Andrea is doing home care but she is exploring her options. My husband is very mobile, she says, but he’s not very steady and he can’t remember anything. I have to tell him how to sit and stand and eat and, well, everything. And he has to be watched every minute cause he does stuff like pouring milk in the sugar or worse. And his clock is all wrong. He is up much of the night and wants to sleep for hours during the day. I’m getting really tired. Maybe I should consider residential.” The group suggests that if she isn’t ready to go the whole residential route yet, maybe daycare is the answer. The added stimulation of being around more people and activities might even help him regulate his clock so that he’d sleep better.

Joy says that’s what she is doing. She is still trying to care for her husband, Bill, at home alone but she now takes him to day care a few times a week. “It does help. I feel more rested now. She has also arranged for him to get his showers there. “It was getting awfully hard for me to do and so just the shower has been a wonderful help for me—and he doesn’t fight them the way he does me,” she adds. Joy is leaning towards residential care too—maybe in the next few months. She sees the visits to day care as paving the way for this move. Bill will already know the place and some of the people.

Every caregiver has to deal with these decisions. And every situation is different. What was yours like?

Read more caregiver stories in our books, the Award Winning A Caregiver’s Guide to Lewy Body Dementia and our just released Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. These books and Pat Snyder’s Treasures in the Darkness are all available on

Friday, June 13, 2014

Risk Factors and Choices

When people ask us what Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders is about. For one thing, it is about risks factors and being able to make informed choices. In our travels, we have met so many people dealing with Lewy body disorders and their stories really touch us. The over-riding theme tends to be, “so few people understand.” Another is “there were symptoms that we didn’t recognize as symptoms until much later. If we’d known sooner, maybe we would have done things differently.” Jim story is one that we tell in the book. Chronic constipation is a common symptom and one of those that even now may not be connected with an early Lewy body disorder:

Annie, my first wife, had chronic constipation for years. She’d learned to deal with it but when a physician told her that the problem could be fixed with surgery, she was thrilled. A few months after her surgery, she was diagnosed with mild dementia. — Jim Whitworth

Annie did not have PD, but she did have a history of Active Dreams. That, combined with her long term chronic constipation, put her at serious risk for eventual LBD, along with its sensitivities to drugs, including those used in surgery.

Later in the book, during a discussion about alternatives to surgery, Jim talks some more about what happened next.

The surgical “fix” the doctor suggested sounded like a no-brainer to us and so of course, she had the surgery. But then, not long afterward, I started receiving “burnt offerings” for dinner. I was shocked. Annie had always been a good cook but now she seemed to burn everything. That was my first warning that things weren’t right. A couple of months later, she was diagnosed with dementia. — Jim Whitworth

Annie’s poor cooking was evidence of a loss of executive functioning, or the ability to do once familiar tasks, an early sign of LBD. Today, Lewy-savvy doctors would check for risk factors like Active Dreams, and with Annie’s history, recommend against the surgery. The drugs used during surgery probably didn’t cause her dementia, but it may have lowered her reserves, allowing the symptoms to emerge sooner they otherwise would have.

If Annie had known what I know now about her risk for LBD, she would not have opted for her elective surgery. She had lived with this problem most of her life and she could have continued to do so. — Jim Whitworth

The Active Dreams that Annie had are another symptom that is often ignored. In the Caregiver’s Guide, he explained:

Annie’s active dreams began years before she had any signs of dementia and we never connected the two. Why would we? She was still thinking clearly and wasn’t forgetting anything when they started – Jim

In Managing Cognitive Issues another caregivers tells of her experiences:

Luke had very mild Parkinson’s. He tripped and fell, breaking his leg. The doctor told us Luke would need surgery if he ever hoped to walk again but that with his PD, there was a possibility of dementia. So far Luke hadn’t been particularly sensitive to any drugs and so we agreed to the surgery, mostly because he was in such pain. He started hallucinating in the recovery room …Then the delusions started and he became very frightened. … I hoped that once he was home, and away from the hospital atmosphere, he’d improve. He did, some. But he still has times when he is very confused and he still has hallucinations now and then. We knew there was a chance of this, but we had to do it. We’d make the same decision again. — Cindy

Chronic constipation, active dreams and PD just three of the many symptoms that can warn of eventual LBD. We all need to be better able to recognize them when they appear. While there is as yet no cure, our latest book lists many ways that you can slow down its progress—and the earlier you start the better. The only way mentioned in this blog is the need to avoid Lewy-dangerous drugs, including the ones used in surgery. However, Managing Cognitive Issues mentions many more, including a multitude of techniques for managing stress. Decreasing stress will do more to limit LBD symptoms than drugs and it doesn’t have those serious side effects.

Recognizing early warning signs can also help you to make informed choices. Jim and Annie would have made a different choice if they had known more. Others, like Cindy and Luke, might still make the same choice, but with a better understanding of the risks. The true goal of Managing Cognitive Issues is to help people live a happier, fuller, more rewarding life—in spite of the disorder they may be facing.

Future blogs will discuss more about choices and how being able to make them keeps a person feeling more in control.

Both of our books are available on