The Whitworths of Arizona, bringing science to you in everyday language.

Friday, December 26, 2014

Merry Christmas and a Happy New Year

We are taking this week off to enjoy the holidays. Today we will be spending with family and look forward to a day filled with joy, happiness and good food! We wish the same to you. After the New Year, we have a couple of blogs about the history of the Lewy body disorders planned. If you have anything you’d like to know more about, just send us a not…or write a comment.

We  want to take this opportunity at the end of the year to thank all of our readers and supporters. Without you we couldn't have written our books, or these blogs, or shared in LBD and PD meetings or presented programs about LBD in its various forms. Your stories and experiences give our work heart and depth. Your questions keep us researching and continuing to learn so that we can pass it all on.

Thank you one and all!

Helen and Jim Whitworth

Friday, December 19, 2014

We Are In This Together

As the holidays show up, the losses we as caregivers experience are often brought to the forefront. No longer can we celebrate the way we used to. Everything has to be adjusted to the needs of our loved ones. But we still have the togetherness. It may be different now too, but it is even important.

As dementia develops, it is like going into a long dark tunnel. Think about how it must feel to be heading down this tunnel that gets darker as you travel. Having someone to cling to makes the journey much less scary. You may have had a good relationship before, but your loved one was probably able to envision himself operating on his own as well. Now that may not be possible. This leads to more feelings of helplessness. Now, your presence becomes crucial. And as it does, so does the fear that you will leave. That you will not want to be tied down to the helpless old wreck that they feel they have become. This in turn leads to excessive clinginess and even to delusions of infidelity.

Right from the first, talk about this as a journey you both are on. Talk about how you are in this together, and how you are in this for the long run. Remember to put everything in positive tense. For instance, say, “I’m staying right here” not “I will never leave you.” As dementia advances, the negative adjectives get lost and he may hear, “I will leave you.”

Right from the first, develop routines and rituals. Pat Snyder author of Treasures in the Darkness) tells how when her husband John was diagnosed with LBD, she told him, “We are in this together no matter what. I want you to always remember that you have TWO BRAINS now---yours and mine. I’ll act as your second brain when your first brain is feeling sick in some way. That’s my job. Your job is to trust my brain.” Because she started this early, John was able to accept the idea. Because Pat used it often, as when he saw something scary that wasn’t really there or when he became confused, John remembered and the technique helped him through many rough spots. For example, when he recently became agitated with their paid caregiver, she reminded him that he’d just had a tooth pulled and his medicine was making him cranky. She said, “You need to use my brain right now and trust her to help you. Lewy has made you ornery!" It made him laugh and he was able then to cooperate more with the caregiver.

You can also adapt the rituals and routines you already have. For example, before Morris became ill, he and Judy had the habit of leaving notes to each other. She kept this up even after he couldn’t read. Even early on, it helped. Judy could leave Morris alone while she ran errands but his time sense was going and he’d get anxious and start calling her cell in about a half an hour. She found that if she left him a note, he’d be fine for a couple of hours. She was there, with him, in that note. Later, when he was in a memory care unit, she’s stick a note over his heart before she went home and it had the same effect. He would pat the note, nod and smile. Again, Judy was “there” with him and he was peaceful.

For more about working with dementia, read our books

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, December 12, 2014

Stressful Visitors During the Holidays

The holidays are a time when we often have more visitors than usual. Visitors we are glad, even excited to see. Family, dear friends, neighbors. We love them all and are glad they take the time to come. BUT…yes, there is always a but. We hear story after story of crises that needn’t have happened, of what appears to be total lack of consideration in what the visitors bring into the home of someone with LBD.

Janice told how a close friend brought an unruly dog to a holiday gathering with, “She’s just a puppy. She’ll outgrow her rambunctiousness.” Roberta shared a similar experience with an in-law who brought a noisy, active two-year old and ignored his loud squeals and shouts, saying, “Happy sounds don’t bother anyone.” People living with active pets and children become immune to the stress they can cause for people who are not used to such behavior and noise. And they seldom have a clue how easy it is to cause stress in someone with LBD and how damaging that stress can be.

Beverly’s adult grandchild showed up with her flu-ridden husband, saying, “We didn’t want to miss the party. Larry will be careful not to breath on anyone.” While people usually understand that a family gathering isn’t the place for a contagious disease, they likely aren’t aware of the LBD’s toll on a person’s immune system and the resultant super high susceptibility to infections.

These visitors aren't being purposely inconsiderate. It's just that people without daily exposure to our loved ones just don’t understand the importance of maintaining a safe, peaceful environment. In addition, they are probably operating on what a loved one used to be like, or what he was like the last time they visited, maybe six months ago. Caregivers know how things change; how what a loved one could tolerate a few months ago is not what they can tolerate now. But visitors don’t. And then, of course, there’s Showtime, that leads them to “know” that Grandpa is obviously not as bad as you say he is.

They have to be told—and told directly. Like it or not, this is the caregiver’s job. Speak up. Be clear. Don’t pull your punches. Don’t hint around and expect them to read between the lines. They really don’t get it. Tell them what you want in clear, direct sentences.

Start with a positive: “We want to see you” or “We love the baby” or ….

Then explain the problem: “BUT your pet/child/etc is too active/loud/contagious….”

Explain the difference between them and someone not used to the behavior: “I know this behavior/condition isn’t a problem for you, but we aren’t used to it and it is stressful for us, and especially for Henry. LBD makes his stress/ immunity tolerance very low and with all the people here, he’s already nearly maxed out.”

Give a clear directive: Please either have better control of your pet/child/etc. or don’t bring it when so many people are here.” Or “Please wait until the disease is not contagious…”

Finish with something to soften it so that you will be heard: “Why don’t you bring the baby—or the puppy—over in a couple of days, so Henry can enjoy him without a lot of people around?” or “Can you come back when your husband is feeling better? We really do want to visit with you.”

For you the problem may be something else. Perhaps your family likes to argue and this upsets your loved one where once, he’d have been right there, putting in his two bits. Or maybe, it’s the food they bring—food your loved one loves but is now forbidden for some reason. Or …. Well, you can fill in the blanks. The problem and the solution remain the same. You know what is stressful to your love one and it is your responsibility to make sure your visitors understand his limits.

Hopefully, you can do this BEFORE they show up. You will have a happier, more peaceful time if you do. If not, do it as soon as you see the problem. Don’t expect it to get better. You will only get more stressed—and telegraph that stress to your loved one. Set the guidelines for a peaceful gathering, insist that they be followed and you will be able to relax and enjoy yourself. That’s important too, you know!

For information about Lewy body disorders, read our books:

Friday, December 5, 2014

Coconut Oil: Is It Wonderful?...Or Is It NOT?

A lot of people believe coconut oil is very nutritious and that it can help dementia. But what about shredded coconut? That's something we use a lot this time of year to add flavor and fiber to many holiday foods. Well, it isn't exactly unhealthy, but it shouldn't be a regular part of your diet. It does supply some key vitamins and minerals. However, its high fat and sugar content greatly decreases its nutritional value. You can use  unsweetened shredded coconut to improve nutritional value but the fat content remains. See the discussion below about the fat in coconut oil and whether it is nutritious or not.   There is no evidence that it helps dementia.

Coconut oil. We know that coconut oil is nutritious in many ways although the jury is still out about whether it is helpful with dementia. Last year, the 10/14/13 blog was ambivalent. There's still very little supportive research although there are many glowing personal reports from a wide variety of sources. We do know that it is wonderful on the skin. But what about as nutrition?

Many people believe that coconut oil has attributes that make it heart-healthy, and that it may even be useful for treating infections. Others swear that it has a definite, positive effect on cognition. Some advocates believe that when transformed by the liver into ketones, it may even restore and renew neuron and nerve function in the brain after damage has set in. That is about as close to a cure as we’ve heard—if it works.

As for scientific proof of these claims, the strongest appears to be a 2012 study with results that showed that ingesting coconut oil provided significant short term benefits to dementia patients. From this, we can deduce that yes, coconut oil apparently does have a positive, if temporary effect. That is, like a drug that treats symptoms but doesn’t cure, it provides a benefit only as long as it is in the system.

So far there is no scientific proof that it can do anything permanent like renewing neurons. We should learn more in September, 2015, when the National Institute of Aging plans to publishes the results of their clinical trial to look at the benefits of coconut oil in people with mild to moderate Alzheimer's disease.

However, the down side is that coconut oil is high in calories and is categorized as a saturated fat, the kind that isn’t heart healthy at all. Advocates say that the way coconut oil is metabolized makes the calories less important. They also say that the oil acts more like a carbohydrate than a saturated fat.

Nevertheless, until further research changes what we know, nutritionists remind us that while healthy fats should make up about 30% of your total intake, saturated fats (including coconut) should be limited to no more than 10%--or about two tablespoons a day. Advocates suggest that you can use it to replace butter on toast or popcorn, use it as shortening in cooking, or add it to smoothies.

Omega-3 fatty acid update: The 10/4/13 blog reported that foods containing omega-3 fatty acids have a positive effect on dementia but that the use of supplements is questionable. This remains true. There is more emphasis on getting enough fats in our diets—healthy fat, that is. Human brains are at least 60% healthy fats, which must continually be replenished for proper functioning. As with essential vitamins, our bodies cannot manufacture these nutrients; they must be obtained from diet. We have been so trained to watch our fat intake that we often neglect to ingest adequate amounts of the fats that our brains need.

A Dutch study found that a diet high in fat seems to postpone the aging of the brain. Olive, canola and possibly, coconut oil, fatty fish, flax and pumpkin seeds and walnuts are examples of foods containing healthy fats. You can find a longer list here. It would probably behoove all of us to add more of these to our diet. (Notice that coconut oil is included in the list of “bad fats” on this list. Again, it IS a saturated fat, but has other attributes that makes it healthier than other saturated fats, and perhaps we will eventually find that it is as healthy as “good fats.”

Friday, November 28, 2014

Gifts for Shut-Ins

Finding a gift for seniors of any type is difficult. By the time a person qualifies “senior,” we usually don’t need much, can’t use much and don’t have long wish lists for anyone to choose from. We go out less, stay home more and are already surrounded by all we need and want. Add dementia to the picture and the list of possible gifts gets even smaller. But we still love to get gifts. That never changes. The gifts don’t have to be big or extravagant. In fact, especially for anyone with dementia, smaller is really better. Remember, “avoid extremes!”

And so here are a few suggestions that might get you thinking:

Red wine. Does your loved one like a little sip now and then? Red wine has been shown to be heart healthy (and therefore brain healthy!), and so a bottle of your loved one’s favorite red might just be the thing. However, even a small glass in the evening may increase Active Dreams (Managing Cognitive Issues, pg 199) and so plan for the drinks to occur earlier in the day.

Chocolate. Studies have shown that dark chocolate may improve brain health. If you loved one is a chocoholic, choose a small box of their favorite type of dark chocolate. Make it all the same kind…having to make choices is no longer fun for the person with diminishing abilities.

Homemade, hand-held treats like cookies. These can bring back pleasant memories of home. Choose either their favorites or something that has a good aroma. Smell is a great trigger of memories. Make the cookies small. If you make brownies or fruit cake, cut it into small helpings that can be eaten in no more than two bites and put each portion into a small paper cupcake liner. Seniors usually eat less at a time—or their interest may become drawn somewhere else. Therefore, if the treat is too big, it is likely to be stowed somewhere in their clothes “for later,” where it will probably be forgotten and turn into uncomfortable crumbs.

Large size puzzles or other mind benders such as those shown on LBDtools.These are appreciated most if your time comes along with them! Plan to spend some time putting together the puzzles with your loved one. If you don’t live close enough, arrange to have someone else do this for you. Seniors love the time you spend with them far more than your gifts!

An easy-to-use telephone. It should have large buttons and an easy-to-read screen with programed in numbers for the people your loved one will want to call. Punching in seven to eleven digit phone numbers leads to wrong numbers called--and frustration. The fewer bells and whistles, the better, unless they are ones your loved one already knows how to use.

A universal TV remote. The model specific remotes are often small and filled with bells and whistles that confuse rather than help. Amazon sells one called USC SR3 Big Button Universal RemoteIt has large back-lit buttons for limited activities like like volume and channel changing. Most seniors watch only a few channels and so some “favorites” buttons make it easier to find these. Look for color coding too. This makes it simple to explain--and to remember: “Punch the blue button and then the red one.” A person with mild to moderate LBD can learn--with lots of repetition and plan the time to work with them into your gift.

Something shareable. Gifts become much more valuable when they come with your time and attention. For instance, my mother loved oyster stew. I’d bring enough for two and then we’d set an impromptu table in her room and share the meal. Many of the gifts above are also sharable.

Visit, hug, touch, laugh, enjoy. Do this as often as you can. As dementia takes away the concept of time, what happened yesterday is gone and forgotten and what will happen tomorrow is no longer comprehensible…there is only today.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, November 21, 2014

Holiday Feasts, Family and Fun

Last week, you were promised a blog about coconut oil--and it will show up eventually. However, this subject is too relevant to the time of the year to postpone.

The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s becomes a part of the family, some adjustments may need to be made. While feasting may still be a part of the agenda, changes in the kinds of food you eat and even when you eat it might be advisable. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.

Much of our holiday food is made with simple carbohydrates (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition—always an issue for anyone with a Lewy body disorder like PD or LBD. For the cook, include more complex carbohydrates like fruits and vegetables. For people at risk for cognitive impairment, go ahead and enjoy some of the traditional foods, but savor smaller helpings and resist taking seconds.

Proteins and saturated fats (think “animal fats”) also play a prominent part in holiday meals. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption. All of this may leave you feeling sluggish and fatigued. Try taking your medication away from meal time, with a small amount of food to avoid nausea. For the cook, consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.

As Parkinson’s advances, one’s tolerance for stress decreases. Families are important but they can also be huge triggers for stress. There can be expectations that end in disappointments, financial pressures over spending issues, unresolved family-of-origin issues that pop up when a family member comes to visit. Make an effort to keep stress levels low during this time any way you can. Diffusing some soothing lavender or rosemary into the air, practicing deep breathing or add some soothing massage sessions are some suggestions. Also ask family members to keep conversations non-argumentative and focused on more pleasant subjects.

Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. For the person with Parkinson’s, preparing a big family meal may no longer be possible. Or if cognition is slipping, the board games after dinner may have passed the point of challenge and instead, become painful evidence of lost abilities. Think ahead and find ways to adapt. Can you order a prepared meal or share the responsibilities with other family members? Can you play an easier game or do something else like look at old family photo albums? Thinking ahead can make all the difference where fun is considered.

For information about Lewy body disorders including Parkinson's, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, November 14, 2014

Chloresterol and Dementia

Low levels of HDL cholesterol, or high-density lipoprotein, have been associated with a variety of neurodegenerative diseases including Parkinson’s, Alzheimer’s and dementia in general. That’s the “good kind” of cholesterol. It helps to prevent clogged arteries, assists nerve-cell synapses to mature and helps to control the formation of dementia-causing proteins. They other type of cholesterol, low-density lipoprotein (LDL) is the bad stuff that plugs arteries and causes high blood pressure and heart attacks. That’s the kind that people take medicine to lower. (reference)

Lifestyle changes. 

There is no evidence that increasing HDL in people with dementia will stop the disease process. However, especially in people with early dementia, it may slow it down. In someone without dementia symptoms, maintaining adequate HDL levels may help to prevent dementia. The good part is that increasing HDL levels and maintaining them doesn’t require drugs! Lifestyle changes will do the job:
  • Get regular exercise. Aim for a variety of activities, and add new ones along the way. The body does better with that then when you do the same thing all the time. Make sure that both aerobic and resistance-training exercises are included.
  • If you smoke, quit. Smoking decreases HDL levels.
  • Eat a Mediterranean style diet, high in fiber-rich complex carbohydrates and low in refined carbohydrates. (See 9/5/13 blog) This diet appears to lower LDL levels while increasing HDL levels.
  • Get enough omega-3 fatty acids and use mono-saturated fats instead of saturated fats. (See 10/4/13 blog.) These have been shown to decrease total cholesterol levels while raising HDL levels. (reference)
    • Focus on purple foods: grapes, red onions, berries, eggplant, purple cabbage. These foods, which also include red wind and black tea, contain “flavonoids”, which decrease total cholesterol while significantly raising HDL levels.
    • Treat yourself to occasional small amounts of dark chocolate and small (5 oz.) glasses of red wine. Both contain resveratrol, which has been found to lower blood sugar. Red wine is also a source of catechins, which appears to improve “HDL levels.
    Cholesterol Drugs

    High blood pressure and dementia are both common in the elderly—and sometimes in the not-so-elderly and they often occur together. Therefore, many people with or at risk for dementia take statins, such as Lipator or Zocor, to lower cholesterol levels and decrease high-blood pressure.

    You may have heard conflicting information about these drugs and dementia. High doses of statins have been shown to lower the risk of dementia—in most people. However, in a 2008 study, 75% of those taking a statin drug experienced cognitive dysfunction. The symptoms  were generally temporary and disappeared when the drug was decreased. Other studies have also shown dementia symptoms connected with statin use with similar reversal rates upon drug decrease. However, in these studies the percentages of people affected have been much smaller..

    Researchers think that people who respond to statins with dementia symptoms have a genetic profile that puts them at risk. It is the combination of their genetic tendencies and the statins that cause the symptoms. Ask your doctor about this if your loved one takes drugs to lower chloresterol. Decreasing the medication may decrease dementia symptoms.

    Next week, the blog will be about coconut oil.

    For about Lewy body disorders read our books:

    A Caregivers’ Guide to Lewy Body Dementia

    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

    Friday, November 7, 2014

    Genes and Environment

    These last few blogs about research have impressed us with the importance of the recognition of dementia risk. For some time it has been possible for someone with a family history of AD to be tested and find out if they are also likely to develop the disorder eventually. Many people don’t do this. They say, “Why should I? Alzheimer’s is not curable and so knowing ahead will only be depressing.” People with Parkinson’s or at risk for LBD would say similar things. They didn’t want to know what was ahead. They used to have a point. But not anymore.

    Researchers now say that it takes two things for dementia to develop: the right (or wrong) genes and a “toxic” environment. While we are still learning what both of these mean, the biggest lesson for right now is that it does take both. Even if you have the genes, dementia is not a sure thing. When I was a substance abuse counselor, I worked with Alaska natives who, as a group, have a strong genetic tendency for alcoholism. They were well aware of this and many avoided becoming alcoholics by choosing not to drink. People with the genetic makeup for dementia can also make lifestyle choices that limit their chances of developing their gene-related disorder. Even if a person already has early signs of dementia, it isn’t too late to make these lifestyle changes and see results. However, if you wait until the dementia is full-blown, all bets are off. Yes, you can still decrease the severity of the symptoms and improve quality of life, but that’s about all. It is like a cancer that has become “inoperable.”

    Concerning genes, researchers are learning what genes mandate eventual dementia and what genes mandate LBD specifically. We know a lot more about this than we did a few years ago, but it is still mostly in the hands of the researchers. It isn’t much help for the average person—yet. As far as LBD is concerned, the best guide at present is still to look at the symptoms. If you have REM sleep behavior disorder, Parkinson’s or mild cognitive impairment, you are at risk for eventual dementia. If you have hallucinations, the dementia is close.

    The second requirement for dementia is a toxic environment. As with genes, researchers are still exploring what this means. They do know that people who grew up around herbicides and pesticides are more at risk for dementia than those who didn’t. Preservatives with nitrates and nitrites have also been identified as possible toxins, as have heavy metals such as mercury. Air pollution from factory emissions and even smog have been linked to cognitive dysfunction.

    So what can we do? We can’t choose our parents. Our genes are what they are. We can’t change our childhood. Where we grew up is in the past and like our genes, it is what it is. But we can change our present and our future.

    • Live a healthy lifestyle. A Mediterranean type diet, adequate fluids and sleep have been shown to decrease the risks of dementia, and may slow—or stop--the growth early stage dementia.
    • Avoid toxins. While you may have lived around toxins in the past, it still isn’t too late to avoid known or suspected airborne, dietary or other toxins and decrease your risk for eventual dementia.
    In addition, you can make your body stronger and better able to battle invading dementia by:

    • Challenge yourself physically and mentally. Challenges should be interesting but not overwhelming. That’s when they get stressful and destructive.
    • Be social. Developing and maintaining meaningful relationships is as important as mental stimulation.
    • Be positive. Make being positive a daily goal. Look for the silver linings and reframe thoughts into positive expressions.
    • Relax. Meditating, deep breathing and practicing regular stress reduction exercises all revive the body and keep it working well.
    • Have fun. Laugh and do activities that you love. Live in the now and enjoy life as it is.

    Read more about all of the above and more in our latest book, Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders. Yes, these suggestions take a lot more time and effort than swallowing a pill or even having surgery or undergoing some other medical treatment—but they will likely be more effective too! There could be a blog for everyone of the above items. Well, there have been blogs in the past about some of these and there will definitely be more in the future.

    For information about Lewy body disorders, read our books:

    A Caregivers’ Guide to Lewy Body Dementia

    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

    Monday, November 3, 2014

    LBD Research, Pt 4. Infrared Therapy and Dementia

    More and more, researchers are finding that the earlier we identify the risk of dementia, the more we can do to—maybe not stop it, but at least to slow down the progress of the disease. Eventually, the hope is that, identified early enough, we can stop it! But in the meantime, here is an interesting study about using infrared light to treat early-stage dementia.

    Infrared light has been shown to speed healing of a wide range of issues, from common cold sores, to chronic pain to eye injuries. The Quietmind Foundation in Pennsylvania is exploring how well it works with EARLY STAGE dementia. They found that it worked well with mice and have moved on to human studies. They hope to show that the treatment increases cerebral blood flow, oxygenation, and facilitate removal of toxic proteins with repeated brief (6 min) exposure to infrared light stimulation. The researchers believe this will improve damaged executive functions (including attention, working memory, strategies of learning and remembering, planning, organizing, self-monitoring, inhibition, and flexible thinking).

    LBD is known for its loss of executive functions vs. the memory losses of those with AD. Thus, this study of special importance to the LBD community. Quietmind reports that in a small preliminary study, people with early stage dementia wore a helmet with 700 LED lights that penetrated the skull. Results after eight weeks showed significant improvement. Caregivers of subjects made remarks like, “He hasn’t done that in three years” and “I have my husband back.” English author, Sir Terry Pratchett, tried the helmet in 2007 in an effort to retard his early-onset dementia. His improvement after three months was minimal However, the progressive disease didn’t get any worse either and that is definitely a positive.

    Although the results sound hopeful, it is far too early to celebrate. There are many questions and concerns. Some experts don’t believe the infrared can penetrate the human skull—and thus, a placebo effect was likely responsible for any improvement in the preliminary group. Or perhaps, the tests used to identify the subjects’ level of disabilities going into the study weren’t accurate. Or…etc. Quietmind hopes to answer all these questions and more with carefully designed clinical trials, for which they are presently seeking subjects. (more information)

    Others have used also infrared—or sometimes yellow--lights in dementia research. (reference) One group that used LED lights to evaluate planning abilities also measured the system’s transmission factor (TF) on the human skull. They found that the TF of infrared laser light and infrared LED light radiation did not differ significantly. This measurement provides some standards so that an answer to the experts’ question about penetration adequate for therapy.

    One 2013 study used low-level laser therapy (LLLT) to protect against AD induced neuron damage. Naturally much more research will be needed before this will be of any value to the average person, but if it works, it could actually stop the disease progress. There would need to be more research to test for effectiveness against Lewy bodies as well.

    Most studies used infrared—and sometimes yellow--light for diagnostic purposes methods, mainly to identify various dementia-related substances in eyes, blood and other areas of the body more easily accessed than the brain.

    It all adds up to there being a lot going on to improve our ability to identify LBD, and then treat it--and someday, stop it or even eradicate it. That's a long way off, but in the meantime, the word for the day is EARLY. If you think you or a loved one may have even mild dementia, do something about it. If you wait, it really will be too late for more than treating the symptoms.

    Next week: Cholesterol and Dementia

    For about Lewy body disorders read our books:

    A Caregivers’ Guide to Lewy Body Dementia

    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

    Friday, October 31, 2014

    Amazon's Black Friday Sale

    Amazon starts their Black Friday sales tomorrow—Saturday, November 1. This is a great chance for you to find some great buys while painlessly helping to support our work. We get a small fee for anything you buy from Amazon when you go there via our webpage or this blog.

    If you are interested in buying our books or other LBD related books, click on LBDtools. This takes you directly to our LBD shop. If you are looking for other items, just click on the Amazon search button on the side panel.

    Thanks so much for your support!

    LBD Research, Part 3. Starting Early

     A couple of studies have identified possible ways to limit the damage that Lewy bodies can cause. In both cases, the researchers started with a fetus—which is about as early in a person’s life that they can get! The first study is one where researchers identified a fetal protein that reappears to protect healthy older people from age-related stresses. The second may eventually provide a safe way for researchers to test LBD drugs, and to test them much earlier in the disorder’s progress. Treating LBD early is important. For some time, researchers have believed that most neurological diseases will remain incurable until they can be identified and treated closer to their start.

    A person goes through more changes before birth than they ever do again. Researchers believe that the protein, REST, helps the fetus adapt to the stress of these changes. After birth, it apparently disappears until the aging process starts. They found that healthy seniors have more of this protective protein than do people with most forms of dementia, including LBD. They also found that REST levels drop as symptoms worsen. Thus, a person with mild cognitive impairment will be better able to handle stress that a person with full-blown LBD. Most of the REST drop-off was in the learning, memory and planning centers of the brain, with little change in other areas of the brain. (reference)

    Researchers do not know yet which comes first, the decline of REST or the cognitive losses. Since research must still be done with autopsied brains, this study could not show how a person handled stress—it could only show the results. However, we can postulate that without the REST protein there to provide protection, additional stress may cause an increase in the number or severity of cognitively related symptoms, such as hallucinations and confusion. As caregivers, we are well aware that as dementia increases, our loved one’s tolerance for stress decreases. We know that while stress may not cause the disorder itself, stress sure can make it worse. This study supports caregiver’s observations.

    If researchers can find a way to replace lost REST proteins in the brains of people with dementia, the cognitive losses might stop or become less troublesome. Of course, a lot more study and research must happen first. More immediately, this study provides a scientific basis for the reason that our loved ones do poorly when stressed and why their stress tolerance is so low, which emphasizes the importance of stress management.

    Stem cell research. Researchers have used stem cells to identify an abnormal form of alpha-synuclein, the protein which turns into Lewy bodies when it “misfolds.”

    Stem cells are the building blocks of our body. They can adapt and grow into any organ. It used to be that most stem cells came from aborted fetuses. This is seldom true anymore. In fact, in most states this is illegal. Sometimes, they come from the cord blood of live births, blood that would otherwise have been discarded. More likely they came from “cell lines,” stem cells collected long ago and cloned to grow more.

    Researchers have been able to grow mis-folded alpha-synuclein, (Lewy bodies) in stem cells. The goal is to eventually be able to use these cells to test new drugs. The advantages of using these manufactured cells are several. (reference)
    • They are human cells and therefore, a better fit than animal cells would be. Actual human trials will still be needed, but this should speed up the research.
    • Testing with stem cells first reduces the risk of possible side effects of yet untried drugs. Even when clinical trials with animals have shown drugs to be safe, there is still a chance that they won’t be with humans. This adds another level of safety before clinical trials with humans.
    • Researchers can watch the cells spread and change as the disease progresses. While researchers can see such changes by examining autopsies of people in various stages of the disease, this has more continuity.
    • Tests can start at various stages of the disease, including very early stages. 
    Like the REST study, this study using stem cells has a long way to go before being practical. However, it is exciting to see what might be in the future.

    To learn more about Lewy Body Dementia read our books:

    A Caregiver’s Guide to Lewy Body Dementia

    Friday, October 24, 2014

    Research, Part 2. Research Directions

    Last week, the blog was an update on research reported about in the past. This week the blog discusses research a little more broadly. There’s a lot of new research going on about Lewy body disorders, particularly Parkinson’s, but much of that relates to LBD as well.

    • There is less emphasis on new drugs for these illnesses. It is now believed that the reason that most neurological diseases are not curable is because they aren’t diagnosed early enough. By the time treatment starts, the disease is so advanced that you can only treat the symptoms. Given that, there are still a couple of new drugs that are work discussing. One, Pimavanserin, was discussed in last week’s blog. When it comes to market, hopefully sometime next year, it is said to treat PD (and LBD) psychosis more safely than other neuropsychotics or behavior management drugs. The second, Amodafinil (Nuvigil) is a psychostimulant, similar to Provigil, which has since been shown to have unwanted side effects. This drug will be discussed in a future blog. There is also some interesting research with stem cells being developed for use in testing PD and LBD drugs.
    • There is more emphasis on discovering disease pathology well before there are any symptoms. Researchers are trying to identify biomarkers, i.e., objective, physical evidence of the presence of pathology. Until recently, accepted objective evidence of neurological diseases could only be obtained via brain autopsy. Now researchers are looking for evidence in other, more accessible areas of the body. Last week’s blog discussed biomarkers in the colon, saliva and skin. They may also be in the heart and eyes.
    • Better imaging is making it possible to identify neurological diseases with a high degree of assurance without autopsy. While none of these methods are accepted yet as full evidence, they are coming closer. The disadvantage of these methods are that they require special radioactive tracers, some of which must be used where they are made.
    • The Alzheimer’s researchers have started including Lewy body dementia patients in their studies and looking for similarities and differences. This means additional research for LBD related issues, especially for differential diagnoses.
    • With the belief that pathology can start early in life, researchers are looking more closely at alph-synuclien, the protein that becomes Lewy bodies when it misfolds, with at least two goals. One is to identify the areas of the body where this protein collects in excess quantities, in hopes of using it as a biomarker. The second is to find out what makes the protein misfold and become toxic.
    • What causes the pathology that leads to neurological disease is also being studied. It is now believed that Lewy body disorders are a result of a combination of genetic and environment conditions. It takes both, researchers believe. When one or the other is missing, the person will not develop the disease.
    • Some research has been successful at prevention, or at least stopping the progress of LBD. A special diet high in vegetables, fruit and fish and low in processed foods and meat may actually reverse dementia symptoms. Other researchers have found a protein that appears to protect seniors from age-related stress, and to decrease the likelihood of dementia. Now, they just have to find a way to manufacture this protein as a supplement or drug, and make it available for use. In the meantime, this research suggests that stress management becomes more important as one ages.

    Future blogs will expand on the above subjects.

    Friday, October 17, 2014

    Research Update

    In April of 2013, this blog reported on some recent research projects of interest to anyone dealing with a Lewy body disorder. Here’s an update for three of those projects.

    Pimavanserin. Reference. Pimavanserin (NUPLAZID), a new drug to treat Parkinson’s disease psychosis, has received Breakthrough Therapy Designation (BTD) from the FDA in September of this year. This means that the FDA agrees that the drug is intended to treat a serious or life-threatening disease and preliminary clinical evidence suggests that it provides a substantial improvement over existing therapies.

    Most drugs used to manage LBD's many behavioral symptoms have been too dangerous to use safely with our loved ones. Even those, such as Seroquel, that may seem to work well for many PwLB disorders come with a serious warning. Clinical trials, now complete, demonstrated that this oral, once-a-day drug had significant antipsychotic efficacy with few side effects. The next step is to submit a New Drug Application, planned for late this year. As with the Exelon, which the FDA approved for Parkinson’s with dementia, the drug, if approved, will be equally useful for DLB, the form of Lewy body dementia which starts prior to motor difficulties.

    Biomarkers: Reference. A biomarker provides objective evidence of a disease. An ideal biomarker:

    1. is objective rather than subjective. That is, it is physical evidence rather than a patient’s or caregiver’s report of symptoms or even a doctor’s evaluation.
    2. can be collected from live people, rather than from an autopsy.
    3. is easily and safely obtained. Collecting a sample for testing would not be painful, uncomfortable, expensive or dangerous.
    4. can be found early, well before symptoms of the disease appear. This gives researchers a chance to identify ways to treat the disease at a much earlier stage.
    The April blog discussed finding alpha-synuclein, the precursor to Lewy bodies, in the nerves of the GI tract even five years before the development of a Lewy body disorder. More recent research explored the expediency of using colonoscopy to look for alpha-synuclein pathology in known PD patients, with the hope that it would provide live, objective biomarkers for Lewy Body disorders. However, the tests were no more than 60% successful. They aren’t very practical either: A colonoscopy may require general anesthesia, not always safe with LB disorders. It always requires preparation that can be uncomfortable.

    But all is not lost. Although the research is early yet, alpha-synuclein has also been found in saliva and skin in amounts great enough to act as biomarkers. These may be more practical; access to live samples is easy and safe. It would also seem likely that it would be possible to find evidence of alpha-synuclein pathology well before any Lewy body symptoms appeared. Apparently, this aspect has yet to be explored.

    Heart Imaging. Reference. Alpha-synuclein pathology has also been found in cardiac tissue. Researchers used a radioactive tracer used with heart imaging that is called 123I-metaiodobenzylguanidine (MIBG), to make a distinction between the Lewy body disorders and AD, and to predict eventual LBD even in amnestic MCI (the type that usually precedes AD). Articles about this procedure abound and it is now considered one of the tests a neurologist can use to help distinguish between AD and LBD. The next step is to discover how early alpha-synuclein pathology can be found in cardiac tissue.

    More information on new research in coming weeks!

    Friday, October 10, 2014

    Guilt, Stress, Depression and Burnout

    Guilt. Caregivers will often feel guilty about not being perfect: about losing patience, about feeling resentful, about having to place their loved one in a residential facility, about wanting time for themselves, and on and on. Caregivers also say they feel guilty for “selfishly” taking time for themselves and other such behaviors. This guilt often leads to excessive stress and depression.

    Stress appears when you feel overwhelmed by your physical needs, worries, responsibilities or expectations. Symptoms are depression, anxiety, irritability, lack of concentration and social withdrawal. In addition, you may feel anger at your situation or even at your loved one (usually accompanied by guilt!), exhaustion, sleeplessness (from nightly caregiver responsibilities or worries) and a variety of increased health problems. Denial about the disease is also common.

    Depression is a major symptom of stress but it often follows loss as well. You feel so low that you lose interest in once pleasurable activities. Depression shares many symptoms with stress, such as feeling sad, anxious, worried, restless, hopeless, helpless, lonely, irritable, guilty, or empty. You may also experience insomnia, fatigue, loss of appetite or overeating, or have problems concentrating, remembering details or making decisions. Although suicide is also a risk, caregivers are less apt to consider this because of their feeling of responsibility towards their loved ones.

    The above three often combine in a variety of ways to cause burnout. In fact they go together so much that it is hard to separate them. They are all common with caregivers in general and even more common those that care for someone with dementia. Dementia caregivers also tend to be older than other caregivers and that doesn’t help. We get tired faster and sicker more easily and the dastardly three sneaks in and drives us to burnout.

    Burnout is when you feel emotionally and mentally exhausted. A once caring person has little energy left to provide adequate care or often, to even feel concerned anymore. Since stress and depression often lead to burnout, it is no surprise that symptoms include those in both conditions, as well as changes in appetite or weight or both, changes in sleep patterns, increased illness, and even feelings of wanting to hurt yourself or your loved one.

    This is a job few people sign up for or train for. However, when it is your loved one, you step up and do your best. It usually involves loss—loss of your way of life, loss of your loved one’s health and even your own, loss of financial security, to name only a few. Family caregiving is usually a 24/7 job, with a growing list of physical, menial and emotional responsibilities that can stress and eventually overwhelm the most dedicated caregiver. When that happens, burnout is present.

    Caring for your loved one’s caregiver is your primary job—it must come before caring for your loved one. This idea may sound radical, but it is based on the same principles as the airline steward’s message to don your oxygen mask before you try to help anyone else. Intellectually, most caregivers know this. But we all tend to forget, and to get so involved with caring for our loved one that we forget and let our own self-care go—or we call ourselves selfish when we do something for ourselves when we could be doing something for our loved one. Change “selfish” to self-caring, and let go of that guilt!

    Future blogs will discuss ways to avoid burnout.

    Read more about these three issues in our books:

    A Caregiver's Guide to Lewy Body Dementia
    Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

    Thursday, October 2, 2014

    Sleep and LBD

    This week's blog is an excerpt from our new book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders:

    For the Lewy partner, sleep is a conundrum. The healthy brain needs rest to function properly. A brain with Lewy bodies must work harder and so it needs even more rest. However, this may not be easy.

    Falling asleep and staying asleep at night may be easier said than done. Sleep disturbances such as Active Dreams, sleep apnea or restless leg syndrome can interrupt sleep. Excessive daytime sleep causes sleep rhythms to change and decrease nighttime sleeping. Therefore, it isn’t surprising that LBD families clamor for a safe sleeping pill.

    Sadly, most common sleep medications are strong sedatives and therefore may not be safe for someone at risk for this disorder. There are some safer alternatives however:

    Melatonin. Talk to the doctor about trying this natural hormone. It triggers wake and sleep cycles and may work as a Lewy-safe sleep aid. A possible side effect is depression—another common LBD symptom. However, since the results will be temporary, it might be worth a try. If it does cause depression, try using melatonin in combination with bright lights, below, to decrease such side effects.

    In addition, try these non-drug suggestions:

    Daytime activity. Stay active during the day, even if it is an effort. A person who sleeps or just sits around all day isn’t going to sleep as well at night as one who keeps busy.

    Short naps. Especially later in the journey, too much stimulation during the day can cause night-time wakefulness. Consider an early afternoon nap to limit stimulation.

    A calm, dark, airy bedroom. Have good air exchange, and a minimal number of blinking lights from clocks, etc. The air exchange makes breathing easier. Blinking lights can trigger confusion, especially for anyone half asleep.

    A set routine. As with everything else, routines help sleep come easier for the Lewy partner. Include a set bedtime and the same few low stress, enjoyable activities each evening.

    Avoid evening excitement. Watch soothing TV shows and avoid anything boisterous or argumentative, or even just stimulating. Such shows can trigger Active Dreams or nightmares.

    Bright lights. Have bright light exposure during the day. A bright-light box early in the morning might help to adjust wake-sleep rhythms. During the rest of the day, be around as much natural daylight as possible. Sunlight and bright-light boxes can also help depression. Warning: Be prepared with sunglasses to protect the eyes.

    Medication time change. Caregivers often report that dementia drugs such as Exelon or Aricept taken in the evenings increase the likelihood of Active Dreams, nightmares and general restlessness. Ask the doctor if the time can be moved to morning. Likewise, anxiety management medications such as Seroquel may work best in the evening, when the calming effects facilitate sleep.

    For more about LBD, read A Caregiver's Guide to Lewy Body Dementia or go to

    Thursday, September 25, 2014


    This blog is aimed at the person with the Lewy body disorder, and especially at the person with PD. That’s because we were at a Parkinson’s support group when a gentleman asked us this question: “What about depression? Why am I so depressed? What can I do about it?”

    The answer is two-fold. First, there’s the chronic (long-lasting) depression, a common Lewy body related symptom. People with a Lewy body disorder are much more likely to be depressed than those with Alzheimer’s. This type of depression is probably chemically related; that is, there is a lack of one of the body’s happy-inducing chemicals such as serotonin. This usually needs to be treated medically. Fortunately, there are drugs, such those in the SSRI family and several non-benzodiazepine based anti-depressants, which are usually fairly Lewy-safe.

    Secondly, there’s situational depression, brought on by the losses that anyone with a degenerative disorder is apt to experience.

    The gentleman nodded. “In the last year or so, I’ve lost my health, wife and my home.”

    Well, that’s enough to make anyone depressed! The good news is that situational depression is usually shorter term and more receptive to non-drug interventions.

    Talk about it.“You are talking,” we told the gentleman. “That’s the first step. You are already on your way to feeling better!”

    You have to own where you are before you can change. Guys, especially, tend to bottle up anything like depression that might make them appear vulnerable and weak. Talking is not about being negative but about being open and honest and willing to ask for help. If you feel sad, don’t hold it in. Find a supportive ear and talk about what’s bothering you and how you feel. The listener’s job is not to tell you to shape up, but to listen, and then help you find ways to decrease the depression—some of the following, for instance:

    Exercise. Most PD people know how important exercise is for slowing down their motor symptoms. LBD people know how important it is for slowing down the cognitive symptoms. Exercise is also a great deterrent for depression. It adds some of those chemicals that may be lacking and just plain makes a person feel better. “But”, we’ve heard, “My health doesn’t allow me to exercise—bad joints, bad heart, wheel-chair bound, etc., etc.” Nevertheless, there are still ways to exercise, perhaps only moving one’s arms, or even passive exercise, where someone else moves the limbs. A half-hour a day at least three times a week is recommended, but if you can only do five minutes at a time—do it. Do whatever you can do as long as you can. That’s ever so much better than none at all.

    Socialize. Connect with people. We are social animals. Isolation tends to lead to depression and makes it worse when depression is already present. Get out and be with people. Play cards, visit, go out to lunch, or a movie. Or do more physical things like play tennis, or golf if you are able. Don’t worry about the score—just play. Or go for a walk. Make the walk in a place like a mall where other people are around. Then smile and keep track of how many people you have to smile at before someone smiles back. Just that small connection is very healthy.

    Be positive. Depression makes it much easier to be negative than positive. Make an effort to put everything into a positive context, even if you have to stop and reword it as you go along. In the same vein, make an effort to be around people who are positive. Being positive is as catching as negativity is! Try not to use words like can’t, or won’t or don’t. Instead of saying, “I can’t walk fast,” say, “I take my time.”

    Medication. Even with situational depression, the above medications can sometimes be beneficial for caregivers as well as their loved ones for a short period of time, just to get over the first hump. A future blog will be about depression and caregivers.

    Read more about depression and LBD in our books,
         A Caregiver’s Guide to Lewy Body Dementia
         Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders

    Learn more about dealing with Lewy body disorders at

    Friday, September 19, 2014

    Very Inspiring Blog Nomination

    I’ve been nominated for the Very Inspiring Blogger Award. Thank you to fellow blogger, Joy Walker, for this exciting and totally unexpected honor. Be sure to check out her equally inspiring blog, 3 Years and 13 Dumpsters: Cleaning House After Dementia.

    Here are the rules:
    1. Thank and link the amazing person who nominated you.
    2. List the rules and display the award.
    3. Share seven facts about yourself.
    4. Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
    5. Optional: Proudly display the award logo on your blog and follow the blogger who nominated you.

    Here are seven facts about me:
    1. I’m a true westerner; I grew up riding a horse instead of a bicycle and never got further east than western Montana until I was over 50.
    2. I married right out of high school and had three children by the time I was 21. Then I attended college along with my oldest daughter.
    3. I’m a retired nurse who specialized in substance abuse and counseling—not dementia! That came after retirement--and even after my caregiver experiences below.
    4. Since retiring, I’ve been a family caregiver for family members with a variety of problems from motorcycle accident injuries to Parkinson’s to cancer.
    5. I square danced off and on for years and always loved it. That was the way Jim and I met!
    6. I’m now married to my wonderful husband, Jim Whitworth, whose mission to spread the word about LBD drives my writing. We are sunbirds who live in Arizona and spend summers in the Pacific Northwest.
    7. I love nuts. Anything tastes better with nuts!

    I recommend any and all of the blogs in this blog’s sidebar. Many are about LBD, but some are about brain health and others are about alternative ways to treat LBD and other neurologic disorders. I also recommend these Facebook pages:
    1. Memory People
    2. Treasures in the Darkness by Pat Snyder

    Friday, September 12, 2014

    Visiting Parkinson's Support Groups

    We’ve been visiting Parkinson’s groups this summer and talking about our book—about the cognitive aspects of PD. Many of the issues in these groups are very similar to those in the LBD support groups that we’ve attended in the past. But some are different.

    • Few have heard of Lewy bodies or know that they cause PD. They are more likely to be aware of the belief that toxins, such as insecticides or Agent Orange, cause it (actually, cause the Lewy bodies that cause the PD).
    • Few have heard Parkinson’s called a Lewy body disorder, but most have heard of—or experienced—Active Dreams, another LB disorder and know that the two often appear together.
    • Most know that dementia is a symptom of Parkinson’s. They are becoming aware that it is more common than once thought. Most know there is some relation between this type of dementia and LBD. Some even know that it is the same thing. In fact, some aren’t aware that about half the time, LBD does not start with mobility problems but with cognition problems and is called Dementia with Lewy Bodies.
    • Most are aware that hallucinations are a symptom of PD, but few recognize them as a symptom heralding dementia. (With PD, hallucinations often start with the person being quite aware that what they are seeing or hearing is not real. Then within three years, the person will not be able to tell whether the hallucinations are real or not. This thinking inability is considered to be a start of dementia—or at least mild cognitive impairment.)
    • Most understand that Lewy body disorders are degenerative diseases with no known cure. However, they are very receptive to ideas about alternative therapies that can slow down its progress. They already use many to slow down the physical degeneration and maintain mobility.
    • Most are very aware of how important exercise is and most have some sort of exercise program. Although they may not have considered that exercise is equally important for cognitive health, the idea makes perfect sense to them. One member said, “Good health is good health. It makes sense that what works for one part of the body will usually help other parts.”
    • Most are also aware of how important diet and sleep are. They seem to have thought less about the value of sociability or mental stimulation but were receptive to the idea. They were also less knowledgeable about the need for stress management but again, easily saw how decreasing stress increased the bodies resources for handling the disorder.
    • Perhaps the most alarming for us was that few group members were aware of the way Lewy bodies could cause a severe sensitivity to certain drugs. Some had experienced this and had been alerted. Some commented that their physician had decreased their PD medicine after they had experienced symptoms such as hallucinations. One caregiver wondered about the connection to her husband’s drugs and his recent extreme sleepiness. They all wanted to know which drugs to watch out for. You can find three lists of these drugs on the LBD Resources page of Scroll down to Needed Documents/Forms.

    We really enjoyed our visits because the group members always had lots of questions and they taught us lots too. We hope to visit many more.

    Learn more about how PD and LBD relate from our books:
    A Caregiver's Guide to Lewy Body Dementia
    Managing the Cognitive Issues in Parkinson's and Other Lewy Body Disorders

    Friday, September 5, 2014

    Atropine for Management of Secretions

    We recently received a query about the use of atropine instead of suctioning to manage secretions and help a person in the end stages of life breathe easier. Neither one is a perfect solution. Suctioning can temporarily remove secretions and ease breathing. However, it can be traumatic and can damage the delicate linings of the mouth and throat.

    Atropine is an anticholinergic. As LBD caregivers, the idea of using any kind of anticholinergic is scary. We know that this family of drugs can cause a person with LBD a multitude of side effects, such as severe sedation, general confusion, hallucinations, delusions,restlessness and more. We’ve been warned repeatedly to avoid such anticholinergics as Haldol or Ambien. But maybe there is a time for at least this one drug—or one of its sisters. One side effect of anticholinergics is that they cause a dry mouth—that is they inhibit the secretion of saliva. Atropine and several similar drugs are used especially for this.

    Some anticholinergics, including atropine, cross the blood-brain barrier more easily than others. These are the ones we fear most because the brain is where they cause those unwanted side effects. However, glycopyrrolate (Robinal) and hyoscyamine (Levsin, Levbid, etc.) are less able to cross the blood-brain barrier and are therefore less likely to cause these symptoms. This means that they might be a better choice than atropine for our loved ones.

    The side effects of anticholinergics are usually dose-related. Because LBDers tend to be overly sensitive to these drugs, a normal dose may act as an overdose but a much smaller amount may work well with few if any unwanted symptoms. Everyone responds differently and so it is a trial and error process, starting with the smallest possible dose of the drug most likely to cause the fewest problems. Then the hospice nurse increases the dose until it works or there are problems. If that drug doesn’t work—or isn’t available, you move on to the next drug and start over. With LBD, nothing is cut and dried!

    One caregiver suggested using an albuterol nebulizer. This drug is used to relax bronchial spasms and may make it easier to get up secretions that are deeper than simple saliva. It is also not an anticholinergic and so it is worth a try before you go to the stronger stuff!

    Education may be all that’s needed. When a dying person loses consciousness or becomes too weak to clear their own secretions, the secretions accumulate in the lungs. As air passes over these secretions during inspiration and expiration, it can cause a noisy, rattling sound. By the time this occurs, patients usually have decreased awareness and so the presence of secretions can often be more distressing to family members than it is to the patients.

    Another aspect of education is the idea that during the end stages, comfort becomes more important than function. This can be difficult to accept, especially when you’ve been so focused, probably for years, on maintaining function and awareness. But now, it is comfort that is needed. This means that a drug such as atropine, which at one time would have been rejected out of hand, may now be a serious consideration.

    Much of the information in this blog was from an article by Melissa Gray: The Use of Anticholinergics for the Management of Secretions.

    You can find more information about LBD and caregiving in our books, both available on

    Friday, August 29, 2014

    When Things Get Tough

    Do you ever have times when it all goes wrong? We recently experienced that. We are in our motorhome for the summer. I often do my best writing right after I get up, sitting there in my office space before it must become our dinette for breakfast.

    One morning, I needed to do some internet research, but my browser wouldn’t open. I tried a different browser. It wouldn’t work either. Jim and I have always considered ourselves pretty computer-savvy, but nothing either of us could do made a difference. (It was a virus—several actually, we found out later.)

    Oh, well, it was time to eat anyway. Maybe some time away would make a difference. (The difference is usually in my ability to think through a solution, not in the problem itself.) I set my computer aside and turned my workplace into a dinette by setting the table. It was Jim's day to make omelets and so I looked forward to a delicious breakfast. But when he turned on the gas burner, it wouldn't light—we’d neglected to fill the propane tank during our last move and now it was empty.

    Well, that wasn’t all bad—we had an excuse to go out for breakfast. Then, when time away didn't improve our ability to fix my computer, we finally admitted we needed help and took my balky computer in for repairs. That wasn’t all bad either. I ended up getting a whole year of service for the cost of that one visit. Now I will be able to use their superior knowledge to keep my computer in much better shape with occasional preventive visits.

    Caregiving can sometimes be like that. Sometimes, you can use a negative to gain a break, or a treat as we did. Sometimes, when you finally go for help, you find there’s more there for you than you thought. Of course, our problems are mild compared to many caregiver dilemmas. How do you find a positive in cleaning up one more mess or one more wet or worse bed, lifting a heavy, unable to help body when your muscles already scream or explaining for enth time why your loved one must, or can’t, do something?

    A lot of it has to do with one’s frame of mind:

    Live one day at a time. Do what you have to today and keep in the back of your mind that tomorrow’s bound to be better, with the load lighter and the day a little brighter.

    Appreciate feeling needed. Giving has a way of giving back. Without you, your loved one’s life would not be nearly as good. Savor that knowledge that what you are doing is useful and helpful. You are making a difference.

    Avoid being perfect. Divide your work into the “must do’s and the “should do’s.” Let the “should do’s” go until you feel better able to cope. The world won’t stop if you leave the dishes undone.

    But there are also some small things you can do:

    Take some deep breaths. Deep breathing does two things: it gives us a little time away from our problems and b) it adds oxygen, which helps rebuild stress-depleted resources. You will think more clearly and feel better able to deal with the situation after only a few breaths. However, be careful not to hyperventilate—breath out as much as you breath in.

    Go on a mini-vacation--give yourself a change to regroup. I went out for breakfast. You may not be able to do that, but you can take a  five minute break. Go into the bathroom and lock the door if you have to. While you practice some deep breathing, close your eyes and imagine yourself someplace pleasant, a warm beach perhaps, or maybe just resting under a tree. You really will feel more positive and more able to face your world when you return from your virtual vacation.

    Laugh--see the silly side of life. When nothing else works, laugh. It is amazing how just laughing at a serious problem makes it seem less burdensome.

    And finally, the big one: Ask for help. You really don’t have to do this all alone! Like us with my computer, many caregivers feel they should be able to do it all without help, especially unscheduled help. But, the worst that can happen when you ask is that the person will tell you “no.” See previous blogs or read our books for ideas about when, who and where to ask for help.

    The bonus is that as I did, you may find that when you ask for help, the help keeps on coming in some form. Perhaps your helper will volunteer to come over one day a week. Perhaps, you finally gave in and took your loved one to the doctor for a bothersome but not, you thought, urgent issue and a change of medication also helped with something else.

    This isn’t about long term problems—just those days, or even several days at a time, when everything seems to tank. When the challenges last day after day, and you seldom get a chance to come up for air, the suggestions here are only stop-gaps. If that’s what is happening, caregiving has stopped being a one-person job and you really need more help on a regular basis. That may be someone to come in several times a week or it may be moving your loved one into a residential facility—or somewhere in between. See previous blogs and our books about this too.

    Learn more about asking for help from
    A Caregiver's Guide to Lewy Body Dementia
    Managing the Cognitive Issues in Parkinson's and Other Lewy Body Disorders

    Friday, August 22, 2014

    Keeping a Healthy Brain

    Living a healthy lifestyle is important for both caregiver and loved one. Many of the same things that keep you physically healthy also keep your brain healthy.

    Get active. Physical activity reduces the risk of dementia. If dementia should appear, physical activity keeps the mind working better longer. Even with severe dementia, exercise is important—“better than any dementia drug,” experts say. Aim for 30 minutes of moderate activity five or more days per week.

    Exercise your brain. The brain is a muscle and it needs to be exercised and challenged too. Mental activities like puzzles and games, taking new classes, and traveling to new places all appear to slow down memory loss. As dementia increases, the challenges change from doing new things to maintaining old skills. However, the need for challenge continues.

    Eat healthy. Include fatty acids, colorful fruits and vegetables, and the right supplements in your diet. Many studies have found that a Mediterranean-style diet based on whole grains, fruits, vegetables, legumes, nuts, olive oil, and fish is good for protecting against dementia. It may also decrease symptoms once dementia is present. For more about nutrition, read this blogs LBD and Nutrition five part series, starting 95/13, or either of the Whitworth books.

    Maintain your friendships. Staying socially active appears to be as important as mental activity. We are social animals and we tend not to do as when we are isolated. Find ways to get out and visit with others regularly. Find someone to sit with your loved one at least once a week so you can get out with others. This serves a double purpose. Your loved one needs to socialize with someone besides you too. When you can’t get out, use the telephone and internet to make contact with others.

    De-stress. Tension, anxiety, and worry become toxins to the brain dealing with even early dementia. They slow it down and increase other LBD symptoms. Do everything you can to make your family’s life calm and stress-free.

    Go Alternative. Use alternative therapies instead of drugs whenever possible, especially for stress management and acting out. These are safer and often much more effective. An added benefit is that they usually include personal attention. For example, a relaxing massage can not only de-stress but also be a form of communication as can applying a soothing topical oil to decrease joint pain. Singing can include the whole family. And pets can be something to talk about as was as an ever-present sources of comfort.

    Find more about LBD in The Caregiver's Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on

    Thursday, August 14, 2014

    Getting Out of the House

    The blog is going up early this week--to make up for the times when it was late! We are visiting family and getting ready to leave on a long weekend of camping. 

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    Last week you met Dave and Bet and we talked about the learning that’s required of the new LBD caregiver. An active couple, they hadn’t let Bet’s PD stop them. A few months ago they were riding their tandem bike in marathons. Now, she falls asleep on the bike—not very safe on a two-wheeler! Dave solved that problem with a new vehicle called a Quadribent—a four-wheeled contraption something like a land-locked paddle boat. Now Bet sits beside Dave instead of behind him and is fastened in with a seatbelt. “It’s not all good,” Dave tells us. “With the tandem bike, when I pumped, her pedals went round with mine and she had to move her legs. Now each side is separate and nothing keeps her from stopping. But at least, we can get still out and bike, which we’ve always enjoyed.

    Dave knows he and Bet are on an adventure where the rules continue to change. He is fortunate that he can be open to new ideas when old ways don’t work anymore. That’s what is needed if you are going to survive as a LBD caregiver.

    With Bet’s awareness is now fading faster than her physical abilities, eating out has become a challenge too. “Appetizers!” Dave exclaimed as he told us about his latest discovery. “They work better than regular meals. Finger foods, you know. Vegetables, and dips and stuff like that. But not sandwiches. She can’t hold them together anymore. Cheeseburgers still work, if there’s lots of cheese for glue.”
    Dave has learned to flow with what works. Appetizers are great. So are chicken nuggets or other things you can eat with your fingers. On the other hand, things that can fall apart like sandwiches are poor choices. If your loved one does want a sandwich, be sure to ask for a knife and fork too. You’ll need them!

    “I’ve begun to worry about public bathrooms,” he said. “The other day, she went into one and didn’t come out for the longest time. Finally, a lady came up to me and asked if my wife had blond hair. When I nodded, she told me that there was a woman with blond hair standing in there, looking confused. Then that kind lady told me there wasn’t anyone else in the bathroom and so she’d stand outside and keep watch while in went in and rescued my wife.”

    Dementia makes decisions very difficult. Faced with so many doors, it’s no surprise Bet was confused. Many malls and large stores have family bathrooms. Doing some research before you go out can make your excursions a lot more pleasant. Some places have a single stall or room and that works well too. You can lock the door and no one is going to walk in on you. Try to limit your trip to places with family or single-stall bathrooms. However, your loved one needs to use the bathroom where that’s not an option, you can—and should—go with them. You might explain and ask for help—perhaps, ask someone to stand at the door and keep the place empty until you are done. People will usually be very glad to help if you are willing to ask.

    Doing your research is as important as being open to change. Knowing what to expect, or how others have handled challenges or what’s available can make your job much easier. Asking for help is also important and the next blog is about just that.

    For more about adapting and doing research, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, both available on our website,

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    Saturday, August 9, 2014

    Caregiving is NOT a One-Person Job

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    Dave and Bet were our neighbors in an RV campground. Bet was recently diagnosed with LBD and Dave is working hard at adjusting to his increasing responsibilities. “I’m not there yet, but I’m working at it,” he said with a grin. But actually, he’s already doing better than many who've been at it much longer.

    One of his first steps was to ask for help. Caregiving is not a single-person task. Like many men—and sadly, fewer women, Dave recognized that right away. When Bet was diagnosed with LBD, they were full-time RVers in Yuma, AZ. He called his daughter, Lynn, and asked her to come and help. She did and together they made it to the Pacific Northwest where Dave and Bet now live—still in an RV but with a permanent address. Lynn and her family live nearby and she helps with the caregiving to give her dad a break now and then.

    Dave has learned to ask for help in other ways too—as with his experience with public restrooms in last week’s blog. Asking for help is often one of the most difficult things a caregiver can do—and one of the most important. However, once the need is known, most people are eager to help. During a discussion in an online support group, a couple of women mentioned that their church groups have rallied around, doing things like bringing casseroles, doing the laundry, sitting with loved ones so the caregiver can run errands and much more.

    Of course, asking for help can boomerang. Lynn often calls Dave and offers to take her mom the next day. Dave has learned to “wait and see.” If Bet isn't up to going out, the experience wouldn't be pleasant for either Bet or her daughter. Lynn understands, but if it is someone who doesn't understand the changeable character of LBD, they can be discouraged and won’t offer again. In another situation, a woman in a support group shared that a neighbor has been willing to help in an emergency but asked not to be called one again. “She couldn't stand the sadness of it all,” the woman said. This can lead to feeling guilty for asking in the first place but don’t let that happen. Instead, feel sorry for the person who sees only the negatives.

    People often don’t know that help is needed, or they don’t know how to help. Or, someone will offer to help and right then you can’t think of anything specific. Or you can think of things, but you don’t know if they fit what the person would want to do. Some people solve this by keeping a list of things that would help as they come up. Things like staying with your loved one while you run errands, coming in to do the vacuuming, bringing a casserole so you won’t have to cook, or even doing the dishes. Every caregiver will have a different list, of course.

    For more about asking for help, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website,

    For our special blog reader's price for these books, Click here.

    Friday, August 1, 2014

    Learning Curves

    We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.

    A selfie with Jim, Dave and Helen
    We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.

    But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)

    Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.

    As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.

    “What does she take the Serequel for?” we asked.

    “Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”

    “Do they bother Bet?”

    “No, they don’t seem to bother her much at all. It’s me they bother!”

    “Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”

    Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!

    For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website,

    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