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 16, 2015
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 LBDtools.com 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.
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 LBDtools.com 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, http://www.brainsupportnetwork.org/, 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: braindonation@brainsupportnetwork.org
The BSN website: http://www.brainsupportnetwork.org/
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.
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, http://www.brainsupportnetwork.org/, 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: braindonation@brainsupportnetwork.org
The BSN website: http://www.brainsupportnetwork.org/
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, September 25, 2015
PD Groups and LBD
LBD caregivers who attend a PD group often come away feeling alienated and asking questions like these: Why do so few members recognize the link between PD and LBD? Don’t they know that most PD patients will eventually develop LBD symptoms?
First, some facts drawn from our latest book, Managing Cognitive Issues:
• As many as 80% of people with PD will show signs of dementia by age 80. If they have active dreams, hallucinations or mild cognitive impairment, dementia will usually occur within a few years.
• In 2005, experts from the dementia and movement fields met and identified Lewy body dementia as an umbrella term for Parkinson’s disease with dementia (PDD) and dementia with Lewy bodies (DLB). At that time they agreed that both disorders had the same cause and the same non-motor symptoms. They arbitrarily set a rule that if the non-motor symptoms started at least a year after the motor symptoms, then it would be called PDD. Otherwise, it would be called DLB.
• Lewy bodies are present in both LBD and PD, but in different parts of the brain. In PDD, they are present in the areas of the brain where both PD and DLB symptoms originate.
• Researchers believe that Lewy bodies are normal proteins that environmental toxins have caused to clump togather and cause more damage, the type of damage depending on where the Lewy bodies are in the brain.
• With PD, Lewy bodies are in the midbrain where fine motor functions are controlled. With DLB, Lewy bodies are in the cerebral cortex, where thinking is controlled. With PDD, Lewy bodies are in both areas and both motor and thinking functions are affected.
• Lewy bodies can also be in other areas of the brain, where they can affect functions like visual perceptions, dreams, swallowing, blood pressure, etc.
Back to the questions: First, there is a natural resistance to accepting that an already debilitating disorder can advance to include other, even worse symptoms like dementia, i.e., become PDD.
This resistance is often assisted by their doctors, many of whom still do not accept that PD advances into dementia as often as it appears to do. When dementia does occur, some doctors say that the disorder was never PD to begin with, that it was always LBD, and that the motor symptoms were “Parkinsonism” not Parkinson’s, itself. When your doctor doesn’t believe the two disorders are linked, it makes sense that you won’t either.
We believe that the information linking PD and LBD gets stronger every year. However, doctors are often working with information that isn’t that recent. The ten years since 2005 is a very short time where medical information is concerned. Many doctors and movement specialists are still following what they learned in school, and may not support a connection between PD and LBD. Worse, even experts disagree! While all seem to agree that Lewy bodies are present in both, not all agree that PD advances to LBD. Some say that when it does, it wasn’t PD to start with, but “Parkinsonism,” which is what DLB motor symptoms are called.
When we visit PD groups and talk about LBD symptoms like hallucinations and active dreams, we see heads nodding in recognition. Every group we've visited has at least one person, often many, with one or both of these symptoms. This helps the group to see the connection between the two disorders. Then we talk about Lewy bodies and how they spread from the area of the brain that causes PD to other areas where they cause these non-motor symptoms. When they ask me how often a person with PD will advance into LBD, I tell them that I, personally, think that it will happen 100% of the time (pause) if a person lives long enough, which might be 105! That usually brings a laugh—and a feeling of reprieve, along with a better recognition of the connection.
On the positive side, we really do see a change of attitude. Most people in the PD groups we’ve attended this year see LBD as at least a sister disorder, with many similar non-motor symptoms, if not an actual part of PD. Most of them have heard of Lewy bodies. Most are interested in learning more. Some already had our first book that focuses specifically on LBD and many were interested in our new book.
As a LBD caregiver in a PD group, you get to be a teacher. You also get to let people know that life goes on, no matter what and that just like they learned to adapt to movement challenges, they will also find ways to adapt to non-motor challenges. For your own support and education, you may need to turn to online groups. There are several very good ones and more starting every day. Check these out and choose one or more that you feel comfortable with.
LBDA.org: Access the first three groups here. Under Find Support. Check to see if there are any local groups near you. Then scroll down to Virtual groups to access the following groups: LBDA Forums, LBD Caregivers Yahoo group and LBD Caring Spouses Yahoo group.
Also check out these two Facebook groups:
Lewy Body Dementia Support Group
Forget-me-not Lewy Body Dementia Support Group
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.
First, some facts drawn from our latest book, Managing Cognitive Issues:
• As many as 80% of people with PD will show signs of dementia by age 80. If they have active dreams, hallucinations or mild cognitive impairment, dementia will usually occur within a few years.
• In 2005, experts from the dementia and movement fields met and identified Lewy body dementia as an umbrella term for Parkinson’s disease with dementia (PDD) and dementia with Lewy bodies (DLB). At that time they agreed that both disorders had the same cause and the same non-motor symptoms. They arbitrarily set a rule that if the non-motor symptoms started at least a year after the motor symptoms, then it would be called PDD. Otherwise, it would be called DLB.
• Lewy bodies are present in both LBD and PD, but in different parts of the brain. In PDD, they are present in the areas of the brain where both PD and DLB symptoms originate.
• Researchers believe that Lewy bodies are normal proteins that environmental toxins have caused to clump togather and cause more damage, the type of damage depending on where the Lewy bodies are in the brain.
• With PD, Lewy bodies are in the midbrain where fine motor functions are controlled. With DLB, Lewy bodies are in the cerebral cortex, where thinking is controlled. With PDD, Lewy bodies are in both areas and both motor and thinking functions are affected.
• Lewy bodies can also be in other areas of the brain, where they can affect functions like visual perceptions, dreams, swallowing, blood pressure, etc.
Back to the questions: First, there is a natural resistance to accepting that an already debilitating disorder can advance to include other, even worse symptoms like dementia, i.e., become PDD.
This resistance is often assisted by their doctors, many of whom still do not accept that PD advances into dementia as often as it appears to do. When dementia does occur, some doctors say that the disorder was never PD to begin with, that it was always LBD, and that the motor symptoms were “Parkinsonism” not Parkinson’s, itself. When your doctor doesn’t believe the two disorders are linked, it makes sense that you won’t either.
We believe that the information linking PD and LBD gets stronger every year. However, doctors are often working with information that isn’t that recent. The ten years since 2005 is a very short time where medical information is concerned. Many doctors and movement specialists are still following what they learned in school, and may not support a connection between PD and LBD. Worse, even experts disagree! While all seem to agree that Lewy bodies are present in both, not all agree that PD advances to LBD. Some say that when it does, it wasn’t PD to start with, but “Parkinsonism,” which is what DLB motor symptoms are called.
When we visit PD groups and talk about LBD symptoms like hallucinations and active dreams, we see heads nodding in recognition. Every group we've visited has at least one person, often many, with one or both of these symptoms. This helps the group to see the connection between the two disorders. Then we talk about Lewy bodies and how they spread from the area of the brain that causes PD to other areas where they cause these non-motor symptoms. When they ask me how often a person with PD will advance into LBD, I tell them that I, personally, think that it will happen 100% of the time (pause) if a person lives long enough, which might be 105! That usually brings a laugh—and a feeling of reprieve, along with a better recognition of the connection.
On the positive side, we really do see a change of attitude. Most people in the PD groups we’ve attended this year see LBD as at least a sister disorder, with many similar non-motor symptoms, if not an actual part of PD. Most of them have heard of Lewy bodies. Most are interested in learning more. Some already had our first book that focuses specifically on LBD and many were interested in our new book.
As a LBD caregiver in a PD group, you get to be a teacher. You also get to let people know that life goes on, no matter what and that just like they learned to adapt to movement challenges, they will also find ways to adapt to non-motor challenges. For your own support and education, you may need to turn to online groups. There are several very good ones and more starting every day. Check these out and choose one or more that you feel comfortable with.
LBDA.org: Access the first three groups here. Under Find Support. Check to see if there are any local groups near you. Then scroll down to Virtual groups to access the following groups: LBDA Forums, LBD Caregivers Yahoo group and LBD Caring Spouses Yahoo group.
Also check out these two Facebook groups:
Lewy Body Dementia Support Group
Forget-me-not Lewy Body Dementia Support Group
For information about Lewy body disorders, read our books:
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, September 18, 2015
Visiting PD Groups
We’ve visited several Parkinson’s groups this summer and just finished participating in the Parkinson’s Power Summit in Spokane. We’ve met some wonderful people and as always, learn more than we teach. Some of the things we’ve learned:
In every group we visited, there were people with slow thinking, hallucinations and other early signs of encroaching LBD. Even so, a favorite refrain in the PD community has been “dementia is a something that a few people with advanced PD occasionally get.” This is changing and more people are aware that there’s a connection between PD and LBD. Group members related with Jim’s stories of his first wife’s hallucinations and active dreams. They experience these symptoms too.
People dealing with PD are very aware that there’s more to PD than movement issues. In fact, we heard over and over that non-motor symptoms were more distressing than the motor symptoms. Hallucinations and active dreams were the ones most mentioned but others such as depression and irrational behavior were also mentioned.
On the other hand, few were aware that drug sensitivity could be a problem even for someone with only PD, and that it could become more likely as the disorder progressed. This is serious, but this symptom can sneak up on you. A person can take a drug for years successfully and then start being sensitive to it. PD drugs are very good examples of this. When a person with PD starts hallucinating, the first think a doctor will do is change the PD drugs that the person has been taking. Other once useful drugs, such as over-the-counter cold and allergy medications can also become troublesome.
PD families are well aware of the value of alternative therapies for management of motor symptoms but less aware of how useful they can be for mood, stress and anxiety management. We heard people discussing drugs they used for these symptoms, but very little about non-drug alternatives. A few did use massage and aromatherapy and Power Summit Conference attendees were very interested in a lecture on using essential oils to deal with these issues and more.
Next week, we will be attending another big conference—and then we will start wending our way back to Arizona.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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.
In every group we visited, there were people with slow thinking, hallucinations and other early signs of encroaching LBD. Even so, a favorite refrain in the PD community has been “dementia is a something that a few people with advanced PD occasionally get.” This is changing and more people are aware that there’s a connection between PD and LBD. Group members related with Jim’s stories of his first wife’s hallucinations and active dreams. They experience these symptoms too.
People dealing with PD are very aware that there’s more to PD than movement issues. In fact, we heard over and over that non-motor symptoms were more distressing than the motor symptoms. Hallucinations and active dreams were the ones most mentioned but others such as depression and irrational behavior were also mentioned.
On the other hand, few were aware that drug sensitivity could be a problem even for someone with only PD, and that it could become more likely as the disorder progressed. This is serious, but this symptom can sneak up on you. A person can take a drug for years successfully and then start being sensitive to it. PD drugs are very good examples of this. When a person with PD starts hallucinating, the first think a doctor will do is change the PD drugs that the person has been taking. Other once useful drugs, such as over-the-counter cold and allergy medications can also become troublesome.
PD families are well aware of the value of alternative therapies for management of motor symptoms but less aware of how useful they can be for mood, stress and anxiety management. We heard people discussing drugs they used for these symptoms, but very little about non-drug alternatives. A few did use massage and aromatherapy and Power Summit Conference attendees were very interested in a lecture on using essential oils to deal with these issues and more.
Next week, we will be attending another big conference—and then we will start wending our way back to Arizona.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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, September 11, 2015
Generic Drugs
LBD caregivers are usually very aware of their loved one’s drug sensitivities. You avoid those drugs that you know can cause problems even if they haven’t for your loved one. You know your loved one can be sensitive to almost anything and so you monitor every new drug carefully. But what about generic drugs? Do you use generic drugs? Do you monitor each new generic version of an old, trusted drug as carefully as you would a new drug?
You should. Generic drugs are required to be the same as the brand name drug they replace “in all ways that matter.” Generic drugs can use different dyes, filling agents, chemical binders or coatings. Although the drug company must show that these differences are “trivial.” However, what is and isn’t trivial for an individual, especially one with the severe sensitivities that LBD imposes can differ widely.
I first came across this years ago when my sister, Lucille, who had PD, broke out in a rash after taking a generic drug for migraines. When she went back to the brand name drug, her rash disappeared. Over the years, Lucille learned that she was likely to react in some negative way to many generics. Her doctor explained that she appeared to be super sensitive to certain fillers or other non-regulated parts of generic drugs and that she should avoid them. Because these ingredients are not regulated, they are not shown on the labels; thus Lucille had no way of knowing what she was sensitive to.
Kathy’s husband, Jerry, has DLB. He too reacted poorly to generics. He’d been taking Seroquel to successfully stop his frightening hallucinations. They tried a generic, but it didn’t work. In fact, it made the hallucinations worse. However, their pharmacist suggested they try a different generic brand before they returned to the more expensive brand name product. It worked well. Later, during an after-hospital stay in rehab, Jerry started hallucinating again. Kathy checked with the nurse and sure enough, the nursing home was using a different generic. They allowed Kathy to bring in the prescription bottle from home and they used that kind the following night. The next day, everyone commented about the unbelievable difference.
The bottom line is that all generics are not the same. If like Lucille, you can’t find a safe one, you may be better off using brand name drugs. However, if you can find a helpful pharmacist, you may be able to find a generic that works as well as the brand name drug. The difference in price definitely makes the effort worthwhile.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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.
You should. Generic drugs are required to be the same as the brand name drug they replace “in all ways that matter.” Generic drugs can use different dyes, filling agents, chemical binders or coatings. Although the drug company must show that these differences are “trivial.” However, what is and isn’t trivial for an individual, especially one with the severe sensitivities that LBD imposes can differ widely.
I first came across this years ago when my sister, Lucille, who had PD, broke out in a rash after taking a generic drug for migraines. When she went back to the brand name drug, her rash disappeared. Over the years, Lucille learned that she was likely to react in some negative way to many generics. Her doctor explained that she appeared to be super sensitive to certain fillers or other non-regulated parts of generic drugs and that she should avoid them. Because these ingredients are not regulated, they are not shown on the labels; thus Lucille had no way of knowing what she was sensitive to.
Kathy’s husband, Jerry, has DLB. He too reacted poorly to generics. He’d been taking Seroquel to successfully stop his frightening hallucinations. They tried a generic, but it didn’t work. In fact, it made the hallucinations worse. However, their pharmacist suggested they try a different generic brand before they returned to the more expensive brand name product. It worked well. Later, during an after-hospital stay in rehab, Jerry started hallucinating again. Kathy checked with the nurse and sure enough, the nursing home was using a different generic. They allowed Kathy to bring in the prescription bottle from home and they used that kind the following night. The next day, everyone commented about the unbelievable difference.
The bottom line is that all generics are not the same. If like Lucille, you can’t find a safe one, you may be better off using brand name drugs. However, if you can find a helpful pharmacist, you may be able to find a generic that works as well as the brand name drug. The difference in price definitely makes the effort worthwhile.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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.
Saturday, September 5, 2015
Preparing for That Long Slide
Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.
Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.
Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.
You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.
If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.
Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?
Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.
Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan
Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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.
Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.
Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.
You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.
If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.
Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?
Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.
Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan
Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & 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.
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