The Whitworths of Arizona, bringing science to you in everyday language.

Friday, August 31, 2012

Reduce Stress to Increase Other Treatments

Reduce Stress to Increase Other Treatments
We attended the Northwest Parkinson Foundation’s HOPE Conference in Spokane on August 25th. We were disappointed that the speaker from Arizona, Dr. Santiago, wasn’t there after all to talk about the non-motor aspects of PD. Still, it was a good conference and we came away with lots of things to think about and consider. Dr. Monique Giroux spoke on Mindfulness and Healing. Expect to see blogs about subjects she brought up in the future like the value of positive thinking or yoga. Do go to her Wellness Center  and learn more about these and other non-drug methods for controlling your PD (or LBD). It is a limited resource at present but she promises that it will grow. Dr. Ford spoke on the importance music and exercise and had us all up dancing.

Dr. Giroux emphasized that exercise is important, but she said, we need to lower our stress for it to be very effective and supported what she said with impressive research results. Dr. Ford followed that up by showing us how we can use music combined with exercise that we enjoy to lower stress levels—and increase functionality, at least temporarily.

This made a big impression on me later as we were walking to our car, after having spent a lot of energy dancing to Dr. Ford’s music. I’m not used to exercising that much and I should have been tired, but I wasn’t. I’d been having fun and my stress levels were down. We’d parked what turned out to be a very, very long way from the meeting room and normally, by half of the way back, even without the extra exercise, my arthritis would have been at full blast and I’d have been hanging on to Jim, dragging after him, and wearily putting one foot in front of the other with my whole focus simply on making it to the car where I could sit down and recover. Instead, I found myself walking happily along beside him, my arthritis forgotten and with enough energy to be able to chat about what we’d just been doing and what our plans were for later.

And so, I thought, this “better exercise without stress” formula works for any issue—PD, arthritis, LBD, etc. It’s like a physical law: Reduce stress if you expect other aspects of your treatment to work. That goes for drugs too, I’ll bet—or good nutrition or adequate sleep. What do you think? Do you have any experiences like mine involving decreased stress?

Saturday, August 25, 2012

Finding a Lewy-savvy Pharmacist—And Other Professionals

When people ask us about how specific drugs might interact with their LBD, we often suggest that they check with their local pharmacist. And so, of course, the next question is, “How do I find a Lewy-savvy pharmacist?” This is a valid question. Although it is the pharmacist’s job to be aware various drug actions and interactions, they too, may or may not have had the training they need to be Lewy-savvy. And so it’s a good idea to check this out ahead of time.

Go to wherever you get your prescriptions filled and ask the pharmacist some LBD questions to which you know the answer. If you like the answers to these questions, you can probably trust their answers to other questions. However, remember that the same pharmacist may not always be on duty, and so be careful to ask for names and shift times. You might want to do this at several different places and chose the pharmacist you like best, even if it means changing where you do business.

The same applies to anyone who works with your loved one—physical, speech, or occupational therapists for instance, or health aides—and yes, doctors too. In each case, make your questions specific to the service your candidate will be providing. For instance, you would ask a drug question of a pharmacist and perhaps a question about fluctuating abilities of a physical therapist.

Although you may only need your pharmacist to be Lewy-savvy, you need more for those who have more interaction with you and your loved one. They also need to be teachable team players. In fact, for many of those who provide a special service, such as a speech therapist, these last two are the most important. Even if they don’t start out being Lewy-savvy, their willingness to work with and learn from you will make them so eventually.

A team player sees you as an important part of the team. They ask questions about your particular situation and listen carefully to what you have to say. They ask your opinion and include you in final decisions.
Being teachable does not necessarily mean that a person takes what you share about LBD at face value. However, they should be willing to listen, ask questions and do their own research to validate your information. On the other hand, you should be viewed as the expert on your loved one’s unique way of doing LBD—what works for them and what doesn’t.

Doctors, neurologists and other specialists need to have all three of these aspects. They need to be Lewy-savvy, teachable AND team players. However, you can do much of your search for a doctor before you ever meet them. Using word of mouth is often a good way to begin the search. Ask other LBD caregivers who they use and how they like them. If you don’t know of any other caregivers, ask on the LBDA forums or the LBD Caregiver Yahoo groups. (see blog). Also ask for Lewy-savvy doctors and specialists at teaching hospitals and research facilities in your area. 

Once you have some names, make an appointment for an interview. Ask your questions and make your observations. Also, you need to be able to share information with the doctor without your loved one present. If this isn’t an option, Showtime (5/25 blog) will become an issue. Even if you decide this doctor isn’t for you, the cost of the visit is worthwhile, simply to “rule out” this one and move on to someone else. Good luck with your hunting.

Thursday, August 16, 2012

Caregiver’s Guide for Only $3.99—And Writing Reviews

It’s true. Amazon is selling the Kindle version of A Caregiver’s Guide to Lewy Body Dementia for only $3.99. Amazon plays with their prices a lot. Although until now, the Kindle version has remained at $9.99, the paperback version has gone from a high of $13.98 to a low of $13.23, but so far, the price has always returned eventually to its norm of $13.57. And so, I don’t know how long this especially low Kindle price will last—maybe a day or a week, or maybe it is even the new base amount. Buy one for yourself or buy some as gifts for family and friends. Also, if your loved one is in a residential facility or if you have a home health aide, this is a great but inexpensive way to share information about LBD.

We’ve added the Kindle version of our book to our LBD BookCorner Store to make it easy for you to buy. Just click here. While you are there, take the time to check out the other LBD related books that we’ve gathered together for you. If there’s a book you’ve been wanting to buy but haven’t yet, check the price again. Remember, Amazon plays with their prices and you just might find a bargain!

And while I’m talking about books, do you write reviews for the ones you read? Please do. You don’t even have to have bought the book on Amazon, although they do show if you did or not. As a buyer, not only of books but of other items as well, I’ve come to depend on consumer reviews and read them carefully before I make a purchase.

They really do help a person chose the right book and all it takes is a little thought and time. Think about what you liked/disliked over all and then add some specifics—I especially liked/disliked the way the author talked about….”.  If you are still unsure what to write, read some other reviews to get an idea of what people write.

As authors, we value every review. What we learn about your likes and dislikes has an effect on everything we write. Thank you to everyone who reviewed our book, and to those who reviewed other books as well. When choosing books for the LBD Book Corner, we always take your reviews into consideration..

And finally, if you know of a book or activity you like and we don't show it, do let me know! Happy reading and gifting.

Thursday, August 9, 2012

Alcohol and Lewy

Judy asks, “Matt loves his after-dinner drink of wine. Is there any problem if that’s all he has?"

Maybe not. It might even be good for him. In the last decade, many studies have shown a positive association between moderate alcohol consumption, especially wine, and reduced risk of dementia and better cognitive function. And any negative results will be temporary and so, once Judy knows what to look for, allowing Matt a single glass of wine might be just fine. But first, let’s look at a few facts about alcohol and the normal, healthy body during sleep.

Normal sleep occurs in cycles of 75% deep sleep and 25% lighter, REM sleep, which is when dreams occur. Each cycle takes about 90 minutes and so you may have several dreams each night but no one dream lasts very long.

Let’s say that Brian, a man with no health problems, has a couple of after-dinner drinks while he watches TV. He says it relaxes him helps him fall sleep easier. Alcohol is a sedative and so it probably does.It will also cause him to sleep more deeply with fewer dreams—for the first half of the night. Then, however, he is likely to be sleep poorly for the rest of the night.

That’s because the body is all about balance. Brian’s drinks lower the functioning of his whole system—blood pressure, everything.  In an effort to compensate, his body secretes chemicals that direct its organs to work harder. Two to four hours into the night, the effects of the alcohol will be gone but the last of his body’s chemicals, secreted while there was still some alcohol in the system, will still be circulating, causing a rebound effect. Brian will be more restless and may find himself waking up. 

Studies have shown that a moderate dose of alcohol (2 glasses of wine) consumed even several hours before bedtime can increase wakefulness during the second half of the night. Further, in an effort to restore the ratio of deep sleep to REM sleep, Brian’s whole night’s quota of dreams will now be crowded into the last half of the night, resulting in more restlessness, and even nightmares.

Now, let’s add Matt’s LBD. First, LBD already slows everything down and so the alcohol has a greater effect. Therefore, Matt may respond to his single drink as though it were much more—putting him in at least, the “moderate drink” category. Next, it may take Matt a longer time to metabolize the drink. Thus, even though he has his drink earlier in the day, it may still have a similar nighttime sedation/rebound effect.
And then, there’s alcohol’s effect on RBD—active dreams. Matt already has active dreams now and then. But with all of his REM sleep crowded into the last half of his night, his active dreams will be longer and probably more disturbing. Nightmares were reported in the literature for people without RBD—certainly, we might expect the same or worse for Matt.

However, all of these effects are temporary. They last only as long as the chemicals do. And so, first Judy and Matt need to do some research.  Go ahead—have the drink. Then Judy needs to watch Matt’s sleep pattern carefully. Is there more restlessness during the last part of the night than during the first part? Is it serious enough to worry about? If not, they are home free. Of course, LBD is a constantly changing disorder and so Judy should continue to be alert for increased wakefulness or increased active dreams.

If Judy does see evidence of a rebound effect, all is not lost. Try the drink earlier in the day and see what happens. If there is still restlessness, consider a wine spitzer, with half, or even less alcohol. Again, first after dinner and then, earlier in the day. If that doesn’t work, consider warm milk or herbal tea, or my personal favorite, a cup of nice hot water.

Go to the links shown in this blog for more information on this subject.  Reminder: We are not doctors and cannot make specific recommendations. We offer our own opinions based on caregiver experiences and information gleaned from current literature. You should consult a physician for your specific issues.

Saturday, August 4, 2012

Comments Please!

This week, I’m using our blog to make a request. We’d really like to hear from our readers. We’ve been doing this blog for a year now. I write, but Jim does his usual suggestions/quality control bit and so it’s his too. 

Since we started posting weekly in March, our readership has grown to over 500 views last month. Thanks to everyone who has checked us out and especially to those who return again and again. But we still aren’t getting many comments and that’s what makes a blog like this so much better.

Do you agree with our thoughts – or not? Do you have a story to add? Is there something you’d like us to write about? To avoid spam, the blog is set up so that I review each comment before it is published. Unless the comment is really out of order, I will of course, publish what you write. We want a give and take here. However, because I do review first, you can make a private comment. Just let me know it is private and I’ll respond without publishing anything.

And while I’m at it, have you checked out our LBD Book Corner? If you have, did you find any books you liked? Do you like being able to find so many LBD-related books in one place? Do you know of any books that aren’t there but should be? Did you check out the Activities page? Is there anything else you’d like to see us add? Again, we would really appreciate your feedback.