Conversations in the Hot Tub

My inspiration for a blog didn’t come from a support group this time. This time it came at the end of a long, hot day of travel. We set up the motorhome, and swimsuits donned, went in search of the swimming pool and hot tub. There was another couple in the hot tub and we struck up a conversation. Turns out the couple was local and both had been working in supervisory positions in residential facilities for over ten years.

I shared that we taught about Lewy body dementia. “Hmm, is that Alzheimer’s related?” one asked. The other one just looked blank.  These weren’t uncaring people. They were professionals who appeared to enjoy their work and their patients. Yet, neither of them knew about LBD even though they likely work with people who have it every day. In fact, as we went on to describe the symptoms, they started nodding their heads. Yes, they could identify patients in their facilities that fit the descriptions. 

They told us about a man who would act out every so often and become so combative that they’d have to send him to the ER.  They obviously didn’t understand how to use behavior management to avert these outbursts—or even to look for triggers. And a lady had syncope—she’d pass out and nothing could revive her until she came out of her “coma” and began acting “just fine” again, and other similar stories. 

In the process of our fairly short conversation, it became apparent to us that these professionals weren’t aware of how dangerous some drugs were for these patients, or how upsetting stress was, or even how stressful some common place things like too much excitement or light can be. Our hot tub conversation brought back the question I blogged about a while back: “Where’s the rage?” And this time, I was feeling that rage. Why is it that the very people who are responsible for our most debilitated loved ones don’t know or understand this not so rare disorder? Why aren’t they being taught?

I know, I know. Be patient. It’s still a “young disorder.” But it’s still frustrating. For now, I just hope that our discussion caused them to do some research and learn more about this disorder that they deal with on a daily basis.

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.