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

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