PDD: Fighting the Odds

A recent study found that over 65% of Parkinson’s patients age 70 and older will have begun to develop Lewy body dementia, the type called “Parkinson’s disease with dementia (PDD). That's the bad news. The good news is that there are many things that PD families can do to fight those odds—to extend the years prior to its appearance and to decrease its effect even after it does show up.

1.      Accept that dementia is a likely PD symptom—sometime. Understandably, acceptance may be difficult. However, without it, you aren’t going to succeed with the other steps. You can't fight something you don't believe is an issue.

2.      Maintain a healthy life style. Stay physically, mentally and socially active and being proactive about what you eat. This is true anyone who wants to avoid any kind of dementia. (That’s all of us, right?)  You can find information about this in many places. Several books in our Book Corner discuss the importance of a healthy lifestyle, as do articles on the LBDA and Alzheimer's Assn websites. Or just google "avoiding dementia" on the internet.

3.      Be alert for drug sensitivities. The ones of most concern are inhaled anesthetics and behavior management drugs. There is a very thorough review of this problem in our book, and it should be required reading for every PD family. Be sure you know the risks before you agree to major surgery. Behavior problems related to LBD can show up long before any noticeable signs of dementia and the drugs often used to treat acting-out are among the most dangerous for a PDD patient. In fact, as LBD encroaches, drug sensitivities in general can increase and so be careful with all drugs. Start with a much lower than normal dose of, for instance, an over-the-counter cold medication or headache remedy, and work up until you get the benefit you want—or side effects you don’t.

4.      Do all you can to decrease stress. For some reason, LBD increases with stress. Identify those areas in your life that are stressful and work with your family and friends to make them less stressful. For instance, if you have communication difficulties, consider a relationship counselor so that you can smooth things out.  If your job is stressful, can you change jobs—or even retire? Reduce clutter in your home. Check light levels-many PD and LBD people are light sensitive. There are many more ways to reduce stress. Some are mentioned in our book, some in Pat Snyder’s book, others you will think of as you go along.

If you maintain a healthy lifestyle, are very careful about the drugs you use, and work diligently to keep stress levels low, you can extend the “good years” for a long time.

On the Road for LBD

We are getting ready to leave our (VERY) sunny state of Arizona and head north to Washington. On July 25^th, we have the honor of sharing the stage at an event in Seattle with Dr. James Leverenz, the Chair of the LBDA’s Scientific Advisory Board and a leader in the dementia field. If you are also in the area, do show up and let us know you read our blog! (Details) This summer we will also be in California, Oregon and other parts of Washington if you know of any group that would like to have us speak.

We’ve started reading as we travel—Jim drives; I read out loud. So far we’ve read Treasures in the Darkness by Pat Snyder, Going Mad by Carol Pendergrass and are in the middle of Thirteen Years and Thirteen Dumpsters by Joy Walker. All are good reading and all have value for the LBD caregiver. Treasures has some great suggestions for preparing for that long journey—like house renovations so that you can keep your loved one home longer and reducing stress. Going Mad reminds us that getting the legal work done early on is a necessity—if you don’t, someone one else may! And Thirteen Dumpsters, which tells the story from an adult child’s view, encouraged me to view my own clutter with a more discerning eye—what can I do to make the inevitable clean up job, both physical and emotional, easier for my children?

Another book just out is Relentless Goodbye, by LBDA blogger Ginny Burkholder, is the story of her journey with her husband, Nelson. We met the Burkholders in 2005—a lovely, interesting couple. I’m sure Ginny’s book will be every bit as interesting. We don’t have Ginny's book in our LBD Book Corner yet, but you can still buy it through our website by clicking on the Amazon search box at the top of the page.

Drug Sensitivities--and More

As usual, when I attend a support group, I come away blessed with new ideas. Marla told how her husband, Bill, had severe nosebleeds. The ER staff couldn’t find anything wrong…nothing to cauterize… They sent him home, but the bleeds continued. It was the weekend and she couldn’t reach his doctor. Desperate, she looked for solutions. Could it be something he’s taking? Well, there’s aspirin and Plavix, both blood thinners. Why they would be causing trouble now, after 8-10 years of use, Marla couldn’t imagine. But she couldn’t find anything else to blame, and so she first stopped the aspirin; the nose bleeds continued. Then she stopped his Plavix. And viola!  No more nosebleeds!

“Why now?” she asked, voicing the question she’d had at the time. We explored the idea that Bill’s advancing LBD was the culprit, increasing his sensitivity to the Plavix, so that his usual dose became an overdose, thinning his blood far too much—thus the nose bleeds.

In our book I tell the story of my sister who had Parkinson’s and terminal cancer. She had a lot of pain. The hospice nurse gave her a small dose of morphine but she had scary hallucinations. Finally, when we cut the tiny pill into fourths, the hallucinations didn’t show up—but neither did the pain. Just that tiny amount did the job.

As LBD caregivers, we learn early to be alert for drug sensitivities—especially those behavior management drugs the ER likes to use. But we forget that there may be other sensitivities too. Most LBD folks spend a lot of time with their eyes closed or hidden by dark sunglasses to avoid a light that might not seem bright to us but is to them. Or, have you noticed that your loved one seems touchier? Their skin might be much more sensitive. Has their taste in music changed? Is loud music less attractive than it used to be?

“Oh,” said Marla, after we’d talked about this. “What about hot peppers? Bill used to love them—the hotter the better!--but he doesn’t like them anymore.” What used to be a fun “kick,” his overly sensitive body now finds just too painful to enjoy.

There is a small up-side to this. Since we are talking about a sensitivity, not an allergy, there might be medications that you thought were on the “no, no” list that you could use if you made the dose small enough. Like my sister’s morphine, a quarter of an allergy pill might do the job without harm. Of course, you’d only want to try this with drugs where there isn’t likely to be any permanent damage. And you should check with the doctor first, too!

Fluctuating Cognition: A Blessing and a Bane

One way that LBD differs from other dementias, is the occasional window of clarity, where our loved ones return from their journey into the confusion of LBD and appear to be very similar to their old selves…alert, verbal, charming, compassionate, humorous, knowledgeable. We all look forward to these times, glory in them when they arrive and mourn for them when they leave—usually without warning and far too soon. In A Caregiver’s Guide to Lewy Body Dementia, a poem by Lynn Davis says it all:

An Old Flame

Yesterday I had a chance encounter

With an old flame.

He was every bit as charming as I remember,

And I was so glad to see him.

We had dinner together and talked

About everything and nothing at all.

It made me feel young again

And yes, I even flirted a little.

It was just so nice

To spend an evening being “normal.”

I don’t recall exactly when he left.

I just looked up and John was gone

And Lewy had returned.

But there’s a flip side. It’s called “Showtime.” That’s when our loved ones are alert in the presence of someone other than ourselves…often someone that really needs to see them the way they usually are. Over and over we hear the story of LBD silenced loved ones shuffling up to the doctor’s office, barely able to walk. Then as soon as they see the doctor, their posture improves, the shuffling becomes a walk and they start talking in full, clear sentences. A Lewy-savvy doctor understands Showtime and plans for it. An initial visit should last long enough to give the Showtime a chance to disappear—a couple of hours or so. Some doctors ask for daily emails that go in the chart and show an ongoing record of behavior. Others may ask you to keep a daily journal and bring it with you.

And there are the family visits. On one hand, it is wonderful that the family—and the caregiver as well—can enjoy your loved one at his best. However, if you have been telling family about problems, asking for help, or even considering residential placement, they may think you are over-reacting. “He doesn’t seem that bad to me,” is the understandable response.

There’s the grown child who prefers not to entertain the idea that their parent might have a disorder like LBD. They see the Showtime and ignore anything else. “Dad’s slowing down some, but he looks all right to me,” they say. Again, time may be the answer. Ask that family plan longer visits; long enough to outlast the Showtime. Caregivers have also used audio recorders or video cameras to record their loved one’s behaviors for unbelieving family—and the doctors too.

Blended families can be even trickier. A grown step-child may blame the step-parent. “Dad’s fine. If he’s worse when we aren’t here, then it’s obvious that my stepmother is the one causing the trouble.”  I just finished reading Going Mad, by Carol Pendergrass. This is the ultimate horror story of LBD and a blended family. Whether you have a blended family or not, read it and be sure to take all the legal steps she recommends—early in your LBD journey.

When fluctuating cognition and delusions combine, life gets even more surreal. Remember, delusions are your loved one’s worst fears—seen by them as fact. (See my March 21^st and April 21st blogs.)  Harry tells his grown son, Clay, that his wife of ten years is trying to poison him because she has a lover. Harry has never been one to make things up and except that he seems genuinely frightened, he is acting normal—asking about the grandchildren, Clay’s wife, etc.  And so why wouldn’t Clay believe him? Oh, yes, there’s that diagnosis of Lewy body dementia—but that’s a lot of b.s. anyway—probably something else his stepmother has made up.  The answer here is to somehow educate Harry about LBD and get him to believe that he can help his father more by decreasing the stress in his life than by adding to the drama. If you have a Lewy-savvy doctor, family office visits might help. Harry will probably be more able to accept the doctor’s words than his step-mother's—especially if some hope and suggestions for things that Harry can do to help come with it.

And that’s the bottom line: education. The more Lewy-savvy your doctor is, and the more Lewy-savvy your family is, the less stressed your loved one will be. And lower stress means more Good Times for all of you to enjoy.

Where's the Rage?

“Where’s the rage? Why is the medical community so unaware aware all of those LBD drug issues? Why do I have to be the one who stands against the system and demand the care my wife needs? What happens to those who don’t have someone as assertive—and knowledgeable—as I am to stand up for them? Why don’t the professionals KNOW? They are supposed to be the ones with the training.”

Bill came up to me after our presentation, asking these questions—obviously feeling the rage himself and wanting to know why it wasn’t endemic. Actually, medical personnel ARE better trained than they were ten years ago. In 2002, most primary physicians had not even heard of LBD. Now they usually know about it although they may not be able to identify it or may still believe that since “all dementias are treated alike”, it is not necessary to know just what kind you have.

Spreading the word about any new disease is a long, painful process. I read somewhere that it takes 20 years for a disease to become known to the general public—and, I suspect, to be more than mentioned off-handedly in medical schools. LBD was only identified as a disease in 1996. That means it still has at least four years of relative invisibility. Often more.

I mentioned this to Bill. “But Lewy bodies have been known for many years,” he returned. Yes, since 1912, but then, only as something that was present with Parkinson’s disease. Japan’s Dr. Kosaka finally connected Lewy bodies with dementia in the mid 1980’s. But it was considered no more than a “rare disorder” until a group of specialists got together and agreed upon a set of diagnostic criteria in 1996.

In 2003, LBD awareness got another big boost. Jim Whitworth and four other caregivers founded the Lewy Body Dementia Assn. They felt Bill’s rage and wanted what he wanted—more awareness about LBD in the medical community and more support for LBD caregivers. The LBDA is almost nine years old now and it has become a strong national organization. Its efforts to advocate for awareness and caregiver support have had results, albeit, not always for the individual caregiver to see. 

In 2005, dementia and movement specialists agreed that dementia with Lewy bodies (DLB), which starts with dementia, and Parkinson’s disease with dementia (PDD) were closely related, with similar causes and cognitive symptoms. Lewy body dementia became an umbrella term for both. Until then, half of our LBD loved ones were not recognized as having those same drug issues. Research shows that drug sensitivities actually do get worse for the PD patient when dementia appears. Another step forward.

In 2008, our first book, Riding a Rollercoaster with Lewy Body Dementia came out, the first comprehensive, easy-to-read book about LBD. In it, caregivers often found the help they needed to take their concerns to the medical community. In 2010 A Caregiver's Guide to Lewy Body Dementia replaced this book.  We are honored to have this place in the history of LBD. We continue to teach, and, like Bill, our focus is on the medical community--especially the hands-on caregivers, the ones who care for our loved ones when we no longer can. If you want your caregivers to be more Lewy-savvy, refer their supervisors to us--we'd love to provide them with some training!  

Some of the latest advances have been in the area of earlier diagnosis. As of 2009, Mild Cognitive Impairment (MCI) has been divided into two types, amnesiac and non-amnesiac. The latter includes less—or no—memory loss along with the decline of executive functions (planning, organizing, etc.). However, it still doesn’t include impairment of social functions, i.e., the problems that delusions bring very early in the LBD journey. We still have a ways to go with this!

Most recently, in 2011, LBD became one of the 100+ Compassionate Allowance diseases, cutting application time for SSA claims down to as little as a few weeks—instead of the months, or even years that it was previously. This doesn’t change the medical community’s awareness of LBD’s problems, but it sure does help caregivers who are running out of funds.

Yes, Bill, things are changing. More people, more medical personnel, even primary physicians, are becoming aware of LBD, even if they still don’t really know how to identify it—or treat it. And yes, the progress is awfully slow—much slower than we’d like. We’ll have to keep on doing our own research and being strong advocates for our loved ones for a while yet. 

The Traumas of Mild Cognitive Impairment, LBD Style

Mild cognitive impairment seems to becoming more common—or more correctly,  more commonly diagnosed. In LBD, this often means that irrational behavior precedes obvious cognitive dysfunction. The person is able to remember well, appears to be able to drive and make the appropriate decisions about stopping, lane changes, etc, and is probably still able to keep up with a job. But there is faulty thinking that can result in poor, sometimes disastrous decisions,  or delusions that lead to paranoia and irrational anger, and hallucinations may have started as well.

We’ve heard of people at this stage making decisions that depleted joint bank accounts, deprived their spouse of many years of spousal retirement benefits, alienated grown children and friends, or angered bosses and customers. One sad and worried woman told of how her husband moved out—angry and making the usual irrational claims of infidelity—just when he was beginning to need her help as a caregiver. Obviously, there has been a change of personality in these people, of their outlook on life, and yet there’s no hope of declaring incompetency. They just don’t meet the cognitive requirements.

We have no answers for this. No easy way of dealing with it. Naturally, all the usual behavior management techniques we’ve discussed before may help, but at this stage, you may not even get a chance to use them before you find your empty bank account, etc. This issue has not yet been addressed adequately by the medical or legal communities. Yes, LBD is still young, still relatively unknown by the general public. But the issue remains. Competency requirements that fit Alzheimer's just don't always work for LBD. Any ideas?

There is one, if you can do it soon enough. Find an attorney who practices elder law as early in your LBD journey as you can. Actually, every couple should do this....even before there is any evidence of illness. Make all the decisions you need to make and draw up all the papers you need to have while your loved one can still participate. Then, armed with a power of attorney, etc., etc., (the etcs will differ with each family) you will be better able to deal with the messes that LBD can make. This isn't the complete answer, by any means. But it is a start.

Finding Time for the Caregiver

When taking care of your loved one is a full time job, how do you take care of the caregiver? You know it’s important; there are multitudes of articles about how important it is to your well-being, and to your loved one’s as well. But where do you find the time? Or the energy? Or even the inclination?

It isn’t easy, but those articles are right: it is as important as any of those things you manage to do for your loved one because “they have to be done and I’m the only one to do them.”

1.      Maintain your support system. This is number one for a reason. It makes all the other suggestions easier to do—or sometimes, possible. Join a local support group—the members KNOW your life—they live it too. Join an online support group too. There’s a list of them on the LBDA website. You can reach out at any time of the day or night and find support.

2.       Use your loved one’s “downtime” for your own care. As the dementia progresses, it is normal for your loved one to sleep more and more. Take advantage of this gift of time in your busy schedule. Yes, you have housework, etc., etc., but it will keep; do something just for you. Fix your hair, do your nails, take a bubble bath. Read a book, preferably something that will make you laugh. A Rexfull Summer, by Helen Buell Whitworth is just such a book, and you can buy it on the LBD Tools website. (OK, this is an outright plug for my book—but it really is a fun read.) These “time outs” will help you to feel refreshed and more ready to face the reality of your again.

3.      Look for something to laugh about every day. It doesn’t have to be wildly funny, just laugh. Something your loved one says or does, something you do, something on TV, something you read--Rex, for instance. (OK, that’s my last plug.) People in caregiver support groups are always sharing humor—often “black humor”—things that are only funny if you are living with the stress of daily caregiving.

4.      Make respite a part of your routine. Do something away from home, and without your loved one, at least once a week. If you start this early on, your loved one will find it much easier to accept. Use your support system—ask friends or family to sit with your loved one for a few hours now and then. Wave goodbye and be out the door as soon as they arrive! If your loved one qualifies for hospice, be sure to ask for volunteers to sit with your loved one a few hours a week. Caregiver respite is not a luxury; it is as much a requirement as a good doctor. And so if none of the above suggestions work, pay someone to come in. (Perhaps you can have them do some of that housework you skipped too!)  If distant relatives have asked how they can help, paying for respite time is a great suggestion.

OK, now it’s your turn. I’ve only mentioned a few ideas here. There are lots more. What do you do to take care of yourselves?