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

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.

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.

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.

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.