Friday, January 16, 2015

Is Tamiflu safe with LBD?

This year we know the flu vaccine isn’t as effective as it could be. And we hear that we should get a prescription for Tamiflu (oseltamivir) immediately if we’ve been exposed to the flu or if we come down with it.

It does seem to be helpful—but only if you take it early on. In a study, the drug helped shorten the time adults were sick by 30% compared to people who didn’t take it within 48 hours of their first symptoms.

But how safe is it for our loved ones with LBD? My first guess was “I’ll bet it is pretty safe.” I was basing this on the fact that most antibiotics are safe for most LBDers. Of course, Tamiflu is an antiviral, not an antibiotic. Does that make a difference? Here’s what our research showed. We researched several sites but found the two shown here to be the most helpful. First, Tamiflu’s “Treatment for Adults”  tells us that Tamiflu is used in two ways:

  • Treatment, once symptoms appear: The standard adult dose of Tamiflu is 75mg, twice daily for 5 days. To be effective, treatment must start within 48 hours of the first flu symptom. A smaller dose can be used to treat a child as young as two weeks. You might ask about the effectiveness of a smaller dose for an elderly person or someone with dementia.
  • Prevention, as when you’ve been exposed, but before any symptoms appear, or for up to six weeks during a community outbreak: One dose, once daily for 10 days, or longer as prescribed. (A smaller dose can be used for a child an young as one year. Again, you might ask about a smaller dose for an elderly person or someone with dementia.

Their website also warns us that Tamiflu:

  • Is not a substitute for an annual flu vaccination  We should all get flu vaccines if we haven't already. 
  • Does not prevent bacterial infections that may happen with the flu. Call the doctor if you have symptoms such as sudden fever, aches, chills or tiredness. 

On other websites, including, we learned that Tamiflu does have some anticholinergic action--and thus, the possibility of drug sensitivity with LBD. The two issues here are strength and duration.

  • Strength: The fact that it is approved for use in young children tells us that the action is normally mild. Tamiflu can cause all of those GI symptoms we relate with anticholinergics: from dry mouth to nausea (common) to urine retention (rare). On rare occasions, it has caused those neurological symptoms such as hallucinations that we relate with LBD drug sensitivity, but mainly in children. It may also cause the same symptoms in the elderly (and we can impose here, anyone with dementia) although this is apparently even more rare.
  • Duration: Tamiflu has a half-life of 6-10 hours, meaning, that most of it will leave the system in less than a day. Thus, you can try the drug knowing than any unwanted symptoms will not last long. If some do show up, then given the amount of severity, you and the prescribing doctor can decide if they are worth the protection the drug provides.

And so, my first guess was about right. There is some anticholinergic action, but it is usually mild and the duration of the drug is fairly short. Therefore, given this year's especially virulent flu, if it were my loved one, I'd definitely give Tamiflu a try, If you do, monitor carefully for unwanted symptoms and consult the doctor immediately if any show up.

If you need help paying for your drugs, this website might help.

The information in this blog is for your educational purposes only. Do not use it instead of consulting a doctor.

For information about Lewy body disorders read our books:

Sunday, January 11, 2015

PD and LBD Historical Timeline

If you are like me, you often wonder about how people learned about a disease. Well, the next blogs will tell you a bit about the process that went into making the Lewy body disorders known. I suspect there will be some surprises. Jim, for instance, was surprised and just HOW long we've known about Parkinson's. This timeline shows why people always know about PD and are less likely to know about LBD and why we are actually right about where we should expect to be, in that regard.

Lewy body disorders are those that are a) caused by Lewy bodies and b) can advance to dementia if it isn’t already present. Starting with the one known as a disease for the longest time and working forward, these are:

1. Parkinson’s Disease
2. Dementia with Lewy Bodies
3. Parkinson’s Disease with Dementia
4. REM Sleep Behavior Disorder
5. Non-amnestic Mild Cognitive Impairment

This week’s blog is a timeline for how the first three came to be recognized as specific diseases or disorders, and then, identified as a member of the Lewy body disorder family. Next week’s blog will address the last two.

AD 175: The Greek physician, Galen, described the symptoms of Parkinson’s disease and called it “shaking palsy.”

1657: English philosopher, Thomas Hobbes, described his illness in symptoms that match what those of shaking palsy.

1817: Dr. James Parkinson, a London doctor, a published “An Essay on the Shaking Palsy,” which established Parkinson’s disease as a recognized medical condition. Parkinson's had based his book on observations of six men. He recommended that someone do further study.

1868-1881: Fifty-plus years later, Dr. Jean-Martin Charcot, the “father of French neurology,” studied shaking palsy and renamed it “Parkinson’s disease” after Dr. Parkinson.

1886: Sir William Gowers, an English neurologist, published this illustration of a man with Parkinson’s in his Manual of Diseases of the Nervous System.

1912: Dr. Fredrick Lewy, a neurologist working with Dr. Alzheimer, published a paper describing abnormalities in the brain cells of people who died with shaking palsy. Eventually, these anomalies were named Lewy bodies, after Dr. Lewy.

1976: Dr. Kosaka, a Japanese psychiatrist, described the symptoms of “dementia with Lewy bodies” (DLB). Two years later, he followed this up with autopsied cases, showing Lewy bodies in the cerebral cortex. (Dr. Kosaka is retired but is still an honorary member of the Lewy Body Dementia Association’s Scientific Advisory Council.)

1994: Dementia is recognized as a symptom of Parkinson’s—Parkinson’s disease with dementia (PDD). Prior to this, it was though to be a separate disease, usually Alzheimer’s that was co-existing with the PD.

1996: Dementia with Lewy bodies (DLB) is recognized formally as a disease. Doctors can now diagnose it and charge for its treatment. Previously, even if a doctor did recognize DLB, he/she would likely document a diagnosis of AD to simplify insurance reporting.

2005: Lewy body dementia is recognized as an umbrella term for both PDD and DLB, with the same cause and the same possible symptoms.

2006 or so: Dementia specialists go from saying that "Lewy bodies that are always present in LBD" to agreeing that they are a major cause of the disorder.

2010: LBD is recognized at the second more common degenerative dementia, second only to Alzheimer's, but the general public is still mostly unaware of its existence.

2011: Researchers suggest that Lewy bodies are caused by a combination of genetics and environment (herbicides, insecticides, etc.).

2014: The PD community prefers to say that PD is caused by the genetics/environment combination, ignoring the Lewy bodies that link PD to LBD.

2014: It’s been 18 years since DLB was recognized as a specific disease in 1996. With the diagnosis of LBD in several celebrities, including Casey Kasem and Robin Williams, the general public is becoming aware of the disorder.

As you can see from this timeline, it can take many decades or more for a disease to travel from being discovered, to being recognized as a specific disease. It usually takes about 20 years for a disease to go from being recognized scientifically to being commonly known by the general public.  We are right on track!

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

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

Friday, January 2, 2015

Resolve to be a Better Caregiver?

“Yeah, sure,” you say. “I’m already over my head in running errands and doctors appointments and staying up half the night with my loved one—and on and on. I can hardly do what has to be done. How can I be better?”

Well, the first thing is to take better care of yourself! If you are already” over your head” in caregiving, you don’t have enough help. Caregiving is NOT a one person job.

Mary, a local caregiver told her support group, “But I’ve always taken care of Alex without help. It’s been a one person job so far—and I don’t want that to change.”

The group’s response to that was to remind her that at first, it hadn't been a one person job. When Alex could share the load, the couple got along fine. But as he became less able, Mary had to take on more and more. It has changed already—from a two-person job to a two-person job that only one person was doing.

“I never thought of it that way,” Mary said. “I guess I do need to make some changes. “But,” she cried, “How can I do that? We live on a limited income. We can’t afford to waste money hiring people to do things I can do.”

“But can you do those things?" the group leader asked Mary. “Yes, you can do each one, and probably do it better than anyone else. But can you do it all? Or more to the point, can you do it all without getting sick? Damaging your back? Losing so much sleep that you become exhausted. Developing any one of these illnesses that caregivers are susceptible to like diabetes, heart problems, stroke, dementia, even death?"

“You make it sound awfully bad. Really, we are doing all right. I just feel overwhelmed now and then,” Mary said.

The group was right. It IS serious. And if Mary doesn’t stop trying to do it all, one of those problems the group leader mentioned will happen. Eventually she may not be able to care for Alex at all.

If, like Mary, you have come to realize that you need more support, here are some suggestions.

Resolve to make a small change first. Many caregivers start by having someone come in a couple of times a week at bath time. Or consider having someone do double duty—some light housework while they watch your loved one which frees you up to go shopping, or out to lunch, or both. Check into local Adult Day Care programs. These relatively inexpensive programs can give your loved one a change of scene and you a few free hours each week.

Resolve to attend a support group. This is as important as making sure your loved one takes his medicine. Maybe more! A support group helps you to know you aren’t alone. There are a lot more people just like you out there and they are willing to help you in a lot of ways. You can vent and the group will understand. You can ask questions and hear what others have found is the best facility or neurologist or treatment or drug or whatever for them and their loved one. You can learn about their experiences and how to make your tasks easier. And much more!

Resolve to ask for help. There are many organizations that can provide assistance, sometimes for free. You can find out what and where these organizations are at your local support group. If not, go on line and search. Start with Eldercare Online ( Family, friends, neighbors, church and members of any other organization that you or Alex belongs to may also be able to help. Sometimes help will come in the form of money to hire help. This is a great way for a distant family member to feel involved. And sometimes, help will simply be an ear, willing to listen to you vent.

Resolve to take time to be you. Take care of your physical health. Make and keep your doctor’s appointments. And take care of your emotional health too. You are more than a caregiver. You are a person in your own right. Do something to remind you of this every day, even if it is only to read an enjoyable book for a half an hour.

Remember, taking care of the caregiver is your PRIMARY job. Only then can you do a good job with your loved one!

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 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.”