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.

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. 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.

Friday, September 11, 2015

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.

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.

Friday, August 28, 2015

Staying Active

In the summer, we stay at RV resorts a lot. On Saturdays, they usually have a breakfast where Jim gets to fill up on pancakes. A while back, we met Dorothy and Ben at one of these Saturday breakfasts. We connected and sat visiting for a long time. Ben was very open about his PD and MCI. Both were making an effort to keep on doing the activities they've enjoyed for years, even though they understand that they have to adapt along the way. A big adpation came when they quit full time RVing. Now they they just go out to RV parks close to home for a week or so at a time--and Dorothy drives. A few days later, we met again, to play a card game. It was a game Ben's been playing  every day for years and we all had a good time.

It didn't go so well, when Dorothy and Ben came to the clubhouse one evening to play another card game. It was similar to one they were used to playing, but even with help, Ben was lost. Although the other players were patient and accepting, the experience was embarrassing and discouraging for Ben. Eventually, he just quit. “I’m going to go walk the dog,” he said and left us to our game. That evening Dorothy and Ben learned some important lessons.

• Dorothy and Ben knew that a new game would be beyond his abilities. However, they thought that since this game was similar to the one he already knew, he’d be able to learn it. Not so; his MCI had become so advanced that the new rules were just as confusing as a totally new game would have been.

The lesson: Don’t add new rules to an old game or task. This is as bad as trying to teach your loved one a new task or game. Both will lead to discouragement and possibly, quitting altogether. Actually, you CAN teach a person with early to mid LBD something new. But it needs to be done in very small increments and with many, many repetitions. A normal person needs to repeat something about six times to learn it. Double or triple that for someone with LBD. But remember that your loved one with LBD can also have Alzheimer’s, where memory is more of an issue. If AD is involved, learning will likely not happen.

• The new group was comprised of seven people, far more than our the cozy group of two couples that Ben had been playing with the previous day.

The lesson: Three people are about all a person with MCI can deal with. Maintaining focus is already an issue, and adding more people becomes too distracting. Keep the group to no more than four, including your loved one.

• The new people were strangers. Dorothy and Ben had never met them before, although we all belong to the same travel group and have similar interests.

The lesson: Having to deal with strangers, even friendly strangers, increases anxiety. New people should be introduced one or two at a time, with the people being the focus, not an activity, such as a busy card game.

• These people were accepting of the “beginner” in the group, but became restless when he didn’t catch on, time after time.

The lesson: It is important that participants understand going in that the goal is to socialize and enjoy the game, not to play well—or quickly. The easiest way to do this is to make up your party of friends who already know your loved one. For instance, a golfer with MCI might limit his playing mates to a few buddies who are aware of his abilities.

• The card game was in the evening, when Ben’s thinking abilities were at their lowest.

The lesson: Play in the morning when thinking levels are at their best. If that isn’t possible, consider playing in the early afternoon, after your loved one has had a nap.

Dorothy and Ben almost always go everywhere together. By mutual agreement, they always have. But now that Ben had become more dependent, Dorothy would like to get out on her own occasionally. For example, she’d like to play games that are more challenging than Ben can now play.

The lesson: Develop a ritual of "girl's (or guy's) time out" while your loved one is still able to stay home alone, You might arrange to meet with friends once a week to play cards, go to lunch, or just visit. When your loved one can no longer stay alone safely, don't give up your respite time. Instead, arrange for someone to come and visit with him while you are gone. Respite times are a must for all caregivers.

Dorothy and Ben are also doing a lot of things right. Next week, the blog will be about this.

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

Friday, August 21, 2015

The Long Slide

You expect LBD to fluctuate. That’s one of its defining symptoms. But, then there comes a day when functioning takes a long slide downward, with a lot more confusion, agitation, sleep problems and less mobility.

When this happens, the caregiver won’t be able to think clearly either. “I told myself that fluctuations happen and upturns follow downturns,” Mary said. “Until that last slide, Lloyd still had wonderful periods of alertness. I couldn’t believe that would end anytime soon. I knew that with LBD, a downturn could be steep and that a person seldom returned to their former functioning. But I guess that I felt that planning for such a slide was inviting it to happen. And so when it did happen, I wasn’t prepared. I was overwhelmed with the extra work and the additional worry but I didn’t even recognize that I was in crisis too until a friend asked me if I didn’t think it was time for more help.”

Any number of situations can bring about these sudden downturns: A simple cold or a serious kidney stone attack; a fall or a painful injury; ongoing problems like UTIs, dehydration or even a supposedly good thing like too much excitement over a happy event. Or even nothing identifiable. A healthy, low stress lifestyle can extend cognition and improve quality of but it does not necessarily extend life. When reserves built up by careful living are gone, mind and body degenerate very quickly. It is no one’s fault. It is simply the nature of the disorder.

As when your loved one can no longer make their own decisions, this is another turning point for which it helps to prepare, earlier than later. Like Mary, it is easier to think that things will go gradually downhill, with expected fluctuations but nothing drastic. They likely will, perhaps for years. But the chances are that eventually, a slide will happen. What will you do then? How will you deal with it when all of your energy, time and attention are taken up in dealing with these new, overwhelming problems? Preparation for a downturn does not mean that you expect or want it to happen. It means that you know it could and that by being prepared, you won’t add to the problem by being so stressed. Think of such preparation as insurance—something you hope you never need but will be very grateful for if you do need it.

As it did with Mary, a downslide tends to sneak up on you, adding work and worry. Before you realize it, you will be so embroiled in just getting by day to day that you may not recognize how stressed you really are—or know what to do about it if you do recognize your stress. Thus, the first step in preparation is setting up a system that will help you recognize that this downturn is different from those in the past.

Make a list that you check daily. If you answer yes to any of these questions, it is time to call for help:

• Has it been more than a week since the slide, with little or no recovery or worse, more decline?
• Am I are feeling overwhelmed by the physical requirements of caregiving?
• Am I getting so little sleep that my caregiving has suffered. Am I less patient or easier to anger?
• Do I feel that there are not enough hours in the day for everything I need to do? Do I seldom take anytime just for me? Am I too tired to enjoy it when I do?
• Am I still un-revived by a few hours of respite? Do I come back still feeling overwhelmed, anxious or tired?

Of course, knowing that you are stressed simply creates more stress unless you know what to do about it. Next week will continue some ways you can prepare for that long slide, and have the information you need ready to use when the time comes.

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.