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

Friday, October 30, 2015

One More Blog about Pain and LBD

Neuropathic pain, i.e., pain due to damaged nerves, is common with people with vascular dementia, which in turn occurs often with LBD. It is also a condition that occurs fairly often diabetes, and with the elderly in general as their nervous systems age. It can appear as chronic back pain, or it may travel along the nerve path into arms and legs, hands and feet. For the PwLBD with poor communication skills, it can be a cause of acting out as a cry of help.

This type of pain can be severe and may not respond to mild pain relievers like Tylenol or even Advil. Lyrica is often used but it's anticholinergic* properties mean that it is a poor choice with LBD. Many physicians treat neuropathic pain with antidepressants, choosing SNRI such as Effexor or Cymbalta over the older tricyclics, which are also anticholinergics. Of course, every PwLBD responds differently to drugs and so you must always "start low and go slow."

Marijuana has also been used. It has been used successfully for years with cancer and is now being considered for other types of chronic pain. Tests done with diabetic neuropathic pain have shown that it does relieve pain significantly better than a placebo, apparently without impairing cognition. However, these people did not already have dementia. The whole issue around this substance, which is now legal in many states, is too big for a paragraph. Look for a whole blog about it in the future.

Surgery. As arthritic pain gets worse, many people opt for joint surgery. This might be an option for knee joints if it is done without inhaled anaesthetic. In the past, this was major surgery done with inhaled anesthetics--strong anticholinergics.* Some doctors now do this surgery with the same kind of spinal block used for baby delivery by cesarean section. With this procedure, the sedation drugs are milder and their effect is much less.

Summary of the last three blogs:

Avoid NSAIDs as much as possible. If you must take them, choose aspirin or Advil, which appear to be the mildest and least likely to cause heart problems. The second generation prescription NSAIDs are safer on your GI system but just as dangerous for your heart as the others. If you take them, take as small a dose as you can and get the relief you want and take them only when you have pain. Don't take them to prevent pain. For years, I, like many others, took Aleeve to limit inflammation--and thus arthritic pain. This isn't recommended anymore. Taking NSAIDs for long periods of time put everyone, not just your loved one with LBD, at a greater risk for heart problems.

Tylenol is probably the safest pain drug, and the safest one to use with chronic pain. However, it isn't totally safe either. If you have any liver damage it will make it worse. Tylenol is added to many other drugs and so make sure you or your loved one doesn't unknowingly overdose on it. Further, the drugs used with it are often anticholinergics.

Opiates in small doses for short periods of time for moderate to severe pain are probably safe--or as safe as any drug is with LBD. However, they aren't usually recommended for long term pain like arthritis or the pains that accompany PD.

The best medical choice for neuropathic pain is probably SNRI antidepressants or possibly marijuana.

Surgery might be a viable option for arthritic knee pain, when it is done with a spinal block instead of inhaled anesthetics.

As you can see, the medical choices for pain relief are limited and none come without adverse effects. Usually, you end up balancing the advantages against the risks. If the advantages outweigh the fear of risk, you may go ahead and use the drug, at least for short term pain, However, all of this does make the use of non-drug pain management a lot more attractive. See next weeks blog.

* Anticholinergics: drugs that interfere with the function of acetylcholine, the same chemical in the brain that Lewy bodies attack.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, October 23, 2015

LBD, Tyenol and Opiates

Last week, we recommended against the use of NSAIDS for chronic pain. A little more about NSAIDs. Aspirin is probably the mildest of these and is still a possible option. Ibuprofen (Advil) is also fairly mild and if you are going to use these drugs at all, it is probably the best option. But first, try another old standby, acetaminophen (Tylenol). It is not an NSAID, and thus causes neither GI bleeding nor heart problems.

The UNC School of Medicine's protocol for treating a dementia patient's pain starts with the over-the-counter (OTC) drug, acetaminophen (Tyenol). It is considered by many to be the safest pain drug around, but only if it is used carefully. The recommended dose is up to two 325 mg tablets every 4 to 6 hours. The elderly, or anyone with LBD, should take about half that. Sadly, Tylenol is not a very powerful pain reliever and people tend to double up when they use it--which can lead to liver failure. In fact, acetaminophen overdose is the leading cause of acute liver failure in the US.

Another problem with both aspirin and acetaminophen is that they are often combined with other, less safe drugs. An example is Tylenol PM, which adds diphenhydramine (Benadryl), a serious anticholinergic drug. Be careful of any drug with initials after its name. This means other drugs have been added. Often these drugs are sedatives or anticholinergics, both of which can trigger LBD's drug sensitivities.

When a stronger pain reliever is needed, many doctors choose an opiate. By chosing one combined with acetaminophen, such as Percocet or Vicodin, they can use a smaller dose. However, opiates are addictive. You might say, "So what. If it helps the pain, he'll probably want it for the rest of his life anyway." But that isn't the way an addictive substance works. "Addictive" means that this is a drug that the body adapts to. As a person's body adapts, more of the drug is needed to provide the same amount of pain relief. Eventually, even large doses might not help. Opiates are fairly strong sedatives and are mildly anticholinergic. With the larger doses, sedative and anticholinergic symptoms like the following may appear:

  • Constipation, which is likely already an issue for anyone with LBD.
  • Sleepiness and additional confusion is common, with an increased the risk of fractures caused by falls.
  • Disordered breathing, with slower or shallow breathing patterns, especially during sleep.
  • Heart problems. Some opioids increase the risk of heart attack or heart failure. Ask the doctor about this before agreeing to any opiate drugs for your loved one.
Bottom line, opiates may work well for PwLBD, in carefully reduced, carefully monitored dosages for severe, short-term pain. However, they may be problematic when used for long term pain such as arthritis.

Denham A. (2013) Pain Management in Dementia. University of North Carolina School of Medicine. July 10, 2013.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, October 16, 2015

NSAID Pain Relievers and LBD

Last week we discussed pain drugs in general. This week, the blog is about NSAIDs (non-steroidal anti-inflammatory drugs) specifically. These are the most used of all drugs for pain, both short term and long term. Most of us have used them at some time or another. Many of us use them regularly for chronic pain. Some of us, myself included, used to use them but were told by our doctor that we couldn't anymore because they'd begun to irritate our stomachs. But how are they with our LBD loved ones?

First, a quick NSAID overview: These drugs include over-the-counter (OTC) drugs such as aspirin, ibuprofen (Advil), naproxen (Aleeve) as well as some newer prescription drugs. NSAIDs come in "selective" and "non-selective" forms. Most OTC drugs are non-selective, i.e., they block both pain-signaling enzymes and enzymes that protect the lining of the stomach.

Newer "selective" prescription drugs, such as celecoxib (Celebrex) and meloxicam (Mobic), are designed to select and block only the pain-signaling enzymes. These newer drugs do appear to have fewer side effects related to the stomach and bowels than other NSAIDs. However, it turns out that the pain-signaling enzymes also affect kidney function and blood pressure. Eventually, the risk of heart failure becomes "similar to that of being a smoker or a diabetic." This is true for all types of NSAIDs, selective or non-selective, OCT or prescription.

Aspirin is also an NSAID but it is little different, in that it also acts to thin the blood. Doctors often prescribe it in mini-doses for this purpose. Taken in such small amounts, it usually doesn't have the same negative effects as other NSAIDs, even when taken over long periods of time. Taken in doses large enough to affect pain, it may have the same negative effects as other NSAIDs.

People have used these drugs for decades for occasional pain, with few reported side effects. The most common side effects involve gastrointestinal distress, such as stomach upset, cramping, diarrhea, ulcers and even bleeding. NSAIDs are also believed to increase the risk of serious cardiovascular conditions (such as heart attack or stroke), especially for those patients already at risk for these conditions...which includes most PwLBD.

Last week's blog noted the three ways that the elderly, and PwLBD especially, process drugs differently from our younger relatives. LBD's drug sensitivity is less of an issue with NSAIDs but other issues are serious: the age-related decrease in the body's ability to process drugs and the likelihood of accompanying issues such as diabetes or high blood pressure. The elderly are also more apt to have chronic pain, often from arthritis, and to use NSAIDs for this. Taking these drugs long term greatly increases the risk of side effects.

Not only are the additional illnesses themselves a concern. So are the drugs a person might be taking for those other illnesses because of how the NSAIDs may interact with them. For example, they significantly increase the danger of internal bleeding when taken with blood thinners. Many NSAIDs are available without a prescription but even so, no elderly person should use them without checking with the doctor or pharmacist first. Naturally, this is even more important for long term use, as with arthritis.

Most PwLBD already have GI issues and many already have heart or blood pressure issues. Many already take baby aspirin to thin their blood. Therefore, it is our opinion that NSAIDs are seldom a good option for long term use by your LBD loved ones. These are the adverse symptoms you should look for when using these drugs:

• GI tract: bleeding ulcers, heartburn, constipation, abdominal pain, nausea, diarrhea and vomiting.

• Heart: Raised blood pressure, fluid retention, congestive heart failure

• Central nervous system: Headaches, dizziness and drowsiness. Ringing in the ears.

• Skin: Sensitivity to sun, rash, easy bruising

• Kidneys: Restricted blood flow, poor kidney function

• Can increase potassium levels which can interfere with other drug function.

You should avoid NSAIDs if you have dehydration, cirrhosis, renal disease, or if you are taking an anticoagulant drug (blood thinner) even if it is just baby aspirin. Renal function and potassium levels should be checked regularly.

Most experts advise the elderly to avoid using these drugs long term. If you use NSAIDs at all, use them just to take the edge off the pain. Then consider using a non-drug therapy such as deep breathing, essential oils, massage or aromatherapy.

The next blog in this series will be about opiate and narcotic pain-killers.

For more about NSAIDs, read the following articles:

FitzGerald G. (2012) NSAIDs and Cardiovascular Risk Explained, According to Studies from the Perelman School of Medicine.

Smith S G. (1989) Dangers of NSAIDS in the Elderly. Can Fam Physician. 1989 Mar; 35: 653–654.

Peterson K, et al. (2010) Drug Class Review: Non-steroidal Anti-inflammatory Drugs (NSAIDs). Oregon Health & Science Univerisity, 2010 Nov.

Cryer B, et. al. (2005) Pain Relief: How NSAIDs Work. WebMD, Arthritis Health Center.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, October 9, 2015

Pain Drugs and LBD

Most LBD caregivers know to be very careful with anticholinergics...those drugs like antipsychotics, tranquilizers and even over the counter (OTC) cold and allergy medications. But what about pain relievers? Some like opiates do have a small amount of anticholinergic action. Does this make them safe in small doses? Others, like ibuprophen (Advil) are milder and have little or no anticholinergic action. How safe are they?

First, we have to look at the body you are putting the drugs into.

• Drug sensitivity is a serious and common LBD symptom. A PwLBD has a better than fifty percent chance of being sensitive to most antipsychotics, anti-anxiety drugs, sleep aids, cold and allergy drugs and a multitude of others. Go to the LBD Resources page on and scroll down to "Helpful Documents" to find several lists of these drugs.

• Most Pw LBD are elderly. Age causes one's ANS to become less effective, making us less tolerant of drugs. The research is becoming very clear that anyone 65 or older should be very careful about using any drug that contains anticholinergics or sedatives.

• Most elderly people also have other health issues that have to be taken into consideration when choosing a pain drug. For example, if a person is already on blood thinners, they should not take a pain drug with blood thinning properties.

Given these three concerns, pain drugs that might be safe for others may not be safe for your loved one. Even drugs that might be safe for others with LBD, might not be safe for your loved one if he/she has other issues. However,you might be able to try them out and see how they work, using the following guidelines.

Know how your loved one's other conditions will limit your choices of pain drugs. For instance, he is has heart problems, those nice, mild OTC drugs like Advil may not be advised. If you are uncertain, ask the pharmacist.

Choose a mild drug. Milder acting drugs are generally safer than a drug that starts out strong. Even then, it will likely take less than a normal dose to do the job.

Choose a short-acting drug.  Better to take several pills a day than to take a drug that stays in the system a long time.

Avoid drugs that sedate.  Sedation causes an already compromised autonomic nervous system to become even more sluggish. Constipation and extreme drowsiness (or sleeping for many hours) are common symptoms.

Start low and increase the dosage very slowly until you get the result you want. If an adverse reaction appears, stop the drug immediately. Also be aware that as LBD progresses, your loved one's response to the drug can change and he may eventually need an even smaller dose or not be able to tolerate the drug any more at all.

Plan to use the drug for only a short time, just to alleviate the worst of the pain. As a general rule, pain drugs should be used for the shortest possible time. The longer a drug is used, the more likely complications will be. Addiction, for example. With an elderly loved one you might not think addiction would be a concern. "What does it matter, as long as it helps the pain," you might say. But with addiction, comes the need for an ever increasing dose to do the job, which your loved one may not be able to tolerate. Most OTC drugs are not addictive. However, long use may cause other problems, even for a younger, healthier person. For the PwLBD, these problems will likely start earlier rather than later.

Follow or pair with a non-drug alternative: One alternative to drugs is the use of essential oils. These can be used with pain in capsule form, as massage agents or in aromatherapy. These oils were used for ages before modern medicines were available. Find a person who is well versed in their use to guide you in your choices.

You can explore other methods to reduce pain such as acupuncture or acupressure, massage, music, or a multitude of stress management tools. What works best will vary depending on the source of the pain and the individual.Our latest book, Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia, includes a lot of information about alternative choices.

For general information about Lewy body dementia and its care, read:
A Caregivers’ Guide to Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, October 2, 2015

Good News about Brain Donations

Brain donations are vital for ongoing LBD research. They also help families obtain a confirmed diagnosis, and perhaps a better sense of closure. However, making a brain donation can be cumbersome, especially if you live in an area where there are no research centers. And even if there is a research center nearby that accepts brain donations, it may not be researching LBD.

The Brain Support Network (BSN) is a non-profit organization that helps LBD families in the USA by coordinating the complex arrangements involved in brain donation. The organization works closely with the Mayo Clinic to which most of the brains are delivered. Unlike many brain banks, Mayo has ongoing research into the causes and treatments for LBD. The 4/4/14 blog, tells how the Brain Support Network makes brain donations easier.

Making a brain donation can also be costly. Mayo does not require that the patient be seen in its clinic, but does require that families pay the cost of brain procurement, which can amount to as much as $1,000. However, Due to a recent charitable contribution targeting LBD research, BSN can now provide families who need assistance with a grant up to $500 for the brain procurement.

BSN staff states that they hope that these grants result in an increase in research into the cause, treatment, and cure for LBD. They are the first organization, and presently, the only one, to offer grants to LBD families for brain donations. Check out BSN’s website,, for information on the two main purposes of brain donation and for more information about the work that BSN does besides helping families make brain donations. For more information about the LBD brain donation grant, email them.

The Brain Support Network doesn’t just help with LBD brain donations. Nationally, they promote and facilitate brain donation for anyone diagnosed with any neurological disorder, including Parkinson’s, MSA, FTD, AD, vascular dementia and others. They also track the research that is done involving these disorders.

Locally, the BSN sponsors caregiver support groups in Northern California and maintain relationships with those neurologists in the area who specialize in the diseases that the organization tracks. The group also sends emails to everyone on their extensive database about upcoming events, research programs, relevant findings, and articles on caregiving.

If you want to be on their email list, contact them at the email address and explain your interest. For example, are you interested in knowing more about brain donations themselves, or are you more interested in research? Or perhaps, you live in Northern California and would like to attend their caregiver support group meetings.

Email the Brain Support Network:
The BSN website:

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.