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