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.