LBD Word for 10-7: Statistics

• LBD affects 1.4 million Americans and likely many more who are undiagnosed.
• LBD is the second most common progressive dementia after Alzheimer's disease (AD).
• Like AD, LBD is caused by damaged proteins, but they are not the same ones.
• LBD is a neurological disease caused by damaged proteins called Lewy bodies that spread in time throughout many areas of the brain.
• Researchers believe that Lewy bodies occur due to a combination of genetics and toxins in the environment.
• Symptoms depend on where the Lewy bodies are in the brain.

For more information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson's and Lewy BodyDementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

October: Lewy Body Dementia Awareness Month

For the rest of the month, I will post a LBD Word or Phrase of the day. Today's word about Lewy Body Dementia is disease.

• LBD is so much more than just dementia. Dementia is just one if it's many symptoms.
• It is a disease that affects many areas of the body besides the brain.
• It is a disease that is progressive and as yet incurable.
• It is a disease where many of the symptoms are treatable.
• It is a disease that we don't know nearly enough about. We don't fully know how we get it or how to stop it--yet.
• It is a disease that needs a lot more research!

Tomorrow's word: statistics

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Home After a Summer of Fire

I’m using my blog this week to talk about the weather. Although it isn’t specifically about LBD, it certainly affects our loved ones, especially those with breathing problems.

We’ve heard so much about the awful hurricanes on the East Coast, but the West Coast has been in crisis too, with far more forest fires than usual. Although mostly only our precious wildlife and forests died,  there was still great danger. For months this summer, an ever pervasive blanket of smoke covered most of British Columbia, Washington, Oregon, Idaho and Northern California, making it difficult for many to breath and filling the hospitals with people who already had breathing problems. Next year, it is likely to be even worse.

We actually had a lovely summer in the Pacific Northwest, visiting with family and friends and enjoying lots of unusually warm weather and very little rain. However, we were among the fortunate ones. While the East Coast dealt with hurricanes, the West Coast forests were on fire and smoke covered the west. Although we visited areas where smoke was eventually very heavy, we were long gone by then and in more secluded areas before that happened.

However, no one in Washington or Oregon, Idaho or Northern California could avoid the smoke completely. It was everywhere. Even in our secluded area, we saw the sky turn murky and the sun become a dull orange ball.  I cried when I read about the devastating fires turning places I'd known and loved for years into blackened trees. Even now, my eyes tear up as I type.

When the rains did finally came in September, we joined our neighbors in cheering and hoping they would be strong enough to put out the fires. In most cases, they weren't. The rains helped but many of the fires still rage, although they are all now partially contained. The word is that the larger fires won't be totally out until December!

So much more devastation this year because of the lack of rain leaving the forests overly dry and it is not predicted to get better.

A few numbers to consider:

• 0.07 degrees Fahrenheit. That's the annual average temperature increase since 1880.(Yes, the world is in a normal warming cycle, but it was very gradual until lately.)
• 0.17 degrees Fahrenheit. That's the average temperature increase between 1970 and 2017, over twice what it would be if it followed the above trend.
• An increase in yearly wildfires for the last 12 years, compared to the annual average from 1980 to 2000.
• 5 month  fire season in the early 1970's.
• 7 month fire season in 2017, with twice the smoke, and more burned area.

And people still insist we don’t think we don't have a global warming crisis?

I suspect a person could compile similar statistics about hurricanes and earthquakes and other natural disasters. I believe that they will all increase as our planet's protective covering is burned away by excess carbon emissions.

OK, I'll get down off my soapbox now and next week, I'll be back to talking about LBD. Thanks for allowing me to use this blog for something else that I feel strongly about.

References:
Environmental Protection Agency
NOAA

An International Honor!

Today, we are tooting our own horn. We are so honored that our book, The Caregiver’s Guide to Lewy Body Dementia, has received international recognition: It has been included in the Caregiver Homes list of The Best Dementia Books: 50 Essential Reads For Anyone Coping With Alzheimer’s Disease Or Dementia. Caring Homes, located in the UK, has been providing direct support to family caregivers caring for patients with complex or chronic diseases for almost two decades. Criteria for inclusion in their list included:

• Being on best seller lists. The Guide has been Amazon’s bestselling book about Lewy body dementia since 2011.
• Earned high ratings by readers: The Guide has 125 five-star reviews and counting on Amazon alone.
• Won awards. The guide received a Caregiver Friendly Award from Today’s Caregiver Magazine in 2012. It has also been named “Book of the Week” twice by Alzheimer’s Weekly and Dementia Weekly and is a featured book in the Colorado Chapter of the Alzheimer’s Association’s list of recommended books.
• Written by experts. Nope. Neither Helen nor James were experts when they wrote the book, but their experience and research since then definitely qualifies them as “Dementia Caregiver Advocates” now.
• Written by loved ones who shared insights into supporting and caring for someone with dementia: James shares his story of going through the Lewy body journey with his first wife, Annie in the late 1990’s, early 2000’s, when little was known about the disorder. Helen includes some stories about caring for her sister with late stage Parkinson’s. However, this book is not just about them. It is a go-to book illustrated by stories from many caregivers besides the Whitworths.

Since the Guide was written, we (Helen and James Whitworth) have written three more books and are working on a third. All of our books are written in our signature style, with well-researched, fact-filled but easy-to-read language illustrated by many caregiver stories. All of these book (except the one yet to be published) are available on Amazon, and on our website, LBDtools.com.

• Riding a Roller Coaster with Lewy Body Dementia was actually their first book, written for staff. This book has been updated and republished. It has been used as a book accompanying trainings that we have presented and can be bought on Amazon. It makes a great gift to give to your in-home helper or to a residential staff member.
• Managing Cognitive Issues of Lewy Body Dementia and Parkinson’s is about the early symptoms of LBD and the non-motor symptoms of Parkinson’s and how to deal with them, using a variety of non-drug options to limit the use of drugs themselves.
• On the Road with the Whitworths. This is a hilarious memoir of our first year of RVing and teaching about LBD in Arizona, California, Oregon and Washington. A great book to read just for fun when you need a break from caregiving!
• Unpublished: (working title: Dealing with the Behavioral and Psychological Symptoms of Lewy Body and Other Dementias.) This book walks the reader through the way dementia changes the brain and causes behavioral and psychological symptoms of dementia (BPSD). Then using this information, the book offers methods for dealing with these BPSD using more effective interactions, non-drug options and fewer drugs. Should be out by early 2018.

We also maintain this blog and our website LBDtools.com.  Our blog entries have been limited this summer while we enjoyed our travels but look for weekly blogs entries starting in October.

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Electronic Monitors

At a recent support group meeting, members were talking about various ways to electronically monitor their loved ones.

By the time I get to bed, I'm so exhausted that I sleep really deeply. My daughter came to visit and told me that she her father got up in the middle of the night and tried to go outside "to find your mother." She talked him into going back to bed, but how long has this been going on? What if he figures out how to unlock the door? I need a warning system. -- Maxine

Judy, another group member, recommended an alarmed door stop. They sell on Amazon sell from $3 to $7 each. (Or you can pay hundreds, but Judy says her cheaper one works just fine. ) These work just like one of those old rubber stoppers except that trying to move the door sets off an alarm. Here's a page of door stop alarms.

Howard takes afternoon naps that almost always last a couple of hours. I'd like to be able to get out and do some shopping and such when he's sleeping but I wouldn't feel safe doing that unless I could monitor him. I know there are baby monitors but I don't want to carry something like that around. Isn't there something I can put on my phone? -- Linda

A group member told Linda about the smart phone app she used as a monitor. We found a couple for you to consider. Which one you would prefer would depend on personal preference:

Presence requires two I-phones i05 or better. You set up one to be the camera to video and use your personal iPhone as the monitor. It can be set to start recording when it detects motion. You can also use the monitoring phone to initiate a two-way conversation. Neither picture nor audio is great, but it might get the job done. This app is free from the Apple Store.

iCamSpy comes in iPhone, Android and PC/Mac versions. It uses a PC with a webcam and microphone for surveillance and the phone for monitoring. You don't have any two-way features but the video is apparently quite good. You can set it up to start with low, medium or high motion sensitivity. This works well with Wi-Fi but poorly with 3G/4G. This app costs $4 from the Apple Store or Google Play.

We have the opposite problem. Jimmy likes to take walks and its pretty safe in our neighborhood. He can go around the block and never have to cross a street but still I worry. I've heard about tracker watches but don't know what to buy. -- Gladys

Colin is in a memory care facility. Our home is too far away for me to go every day but we can phone although Colin can't figure out how to use a cell phone and the land line is long distance. Surely there's something out there that will work for us. -- Yvonne

The Verison Gizmo Gadget would probably work for both Gladys and Yvonne. Caregivers who have tried it report that it is designed as a child's watch but "doesn't look childish." It has a GPS that Gladys can use to keep track of Jimmy. It is also a very simple phone. Colin need only tap a "ringing phone" icon twice to answer the phone or call a preprogrammed number. If Colin doesn't answer, the phone automatically answers in ten seconds, which would allow Yvonne to know what's going on around Colin. You have to be a Verizon customer to use this gadget and it costs $149 initially plus an additional $5 a month. However, it does have great reviews in a variety of places. This PC Magazine article describes it and Verison's ad does too. It has other features too but they only show up if you want them to. All Colin would see are the phone icons.

Getting Lew in and out the car is almost impossible for me anymore. I wish doctors still make home visits. We Skype my son and his family all the time. Wouldn't it be great if we could just Skype the doctor? -- Janice

We wouldn't recommend that Janice give up taking Lew to the doctor altogether, but Teledoc is a virtual health service that might act as a supplement for things like a UTI. Virtual visits to qualified doctors take place over the phone or through video. They also offer two- and three-party calling to keep you as the caregiver involved with every visit, giving you more flexibility. Available any time of day, seven days a week, they cover non-emergency care for such conditions as colds, flu, rashes, respiratory infections and more. The first visit may be free and following visits are $45 until Oct. 31, 2017, after which they are $49. AARP CARECONNECT for Family Caregivers.

To help collect information for your virtual doctor's visit you might like to use a fitness tracker. The URBST Fitness Tracker for is also a wireless Bluetooth 4.0 heart rate monitor and sleep monitor. It acts as a traditional watch as well. Sync it wirelessly to your smart phone or PC. Because it is waterproof and has a long life battery, it doesn't have to be removed very often. (I've worn a similar one for almost two years!) $38.90 on Amazon. It does only come in black. This one was relatively inexpensive and had five stars--a winner in our book! Click here to review or buy.

Feel free to make more suggestions. If we get enough, we'll do another blog!

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

NUTRITION THERAPY FOR DEMENTIA: USING ESSENTIAL OILS

This blog is by guest blogger, Regina Hucks, our consultant on alternative therapies.

You will find an enormity of Essential Oils on the web, in health food stores, specialty shops, even grocery stores but one thing I can state as absolute fact … Essential Oils are NOT alike.

Rather than use an explanation from a biased source (a manufacturer or supplier) I’ve gone to the dictionary to answer the question, “What IS an Essential Oil?”

“An essential oil is a concentrated hydrophobic liquid containing volatile aroma compounds from plants. Essential oils are also known as volatile oils, ethereal oils, aetherolea, or simply as the oil of the plant from which they were extracted, such as oil of clove. An oil is "essential" in the sense that it contains the "essence of" the plant's fragrance—the characteristic fragrance of the plant from which it is derived.[1] The term essential used here does not mean indispensable as with the terms essential amino acid or essential fatty acid which are so called since they are nutritionally required by a given living organism.[2]

Essential oils are generally extracted by distillation, often by using steam. Other processes include expression, solvent extraction, absolute oil extraction, resin tapping, and cold pressing. They are used in perfumes, cosmetics, soaps and other products, for flavoring food and drink, and for adding scents to incense and household cleaning products.”

Essential Oils cannot be reproduced in the pharmaceutical industry. Chemists can replicate some of the known constituents but it would be next to impossible to successfully replicate or recreate an essential oil in the laboratory without sacrificing purity and therapeutic value.

Essential Oils embody the regenerative, protective and immune strengthening properties of plants. These are very powerful antioxidants that neutralize free radicals which can cause cellular damage in the body. Many essential oils have antibacterial, antifungal, antiviral, anti-infectious, antimicrobial, antitumor, anti-parasitic and antiseptic properties.

So, right now you're asking, what does all of this have to do with dementia and nutrition? The answer is….quite a lot.

To read more about using Essential Oils in Nutrition Therapy, click here:

http://alternativetherapiesfordementia.blogspot.com/

To reach Regina with your questions or feedback, please, click the link below and fill in the form.
http://www.lbdtools.com/contact2.php

Next up: Touch and Massage Therapy using Essential Oils – We’ll discuss the recommended oils to use in both therapies and oils for specific disorders / diseases, improved sleep, reducing stress, depression and anxiety as well as effective massage techniques you can easily learn.

References:

1. Kiecolt-Glaser JK, et al. Omega-3 supplementation lowers inflammation and anxiety in medical students: a randomized controlled trial.
http://www.ncbi.nlm.nih.gov/pubmed/21784145

2. Kiecolt-Glaser JK, et al. Depressive symptoms, omega-6:omega-3 fatty acids, and inflammation in older adults. http://www.ncbi.nlm.nih.gov/pubmed/17401057

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Neither Regina Hucks nor Helen and James Whitworth are doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Traveling with Stress

We've been traveling, and experiencing multiple challenges. Every year we plan to leave Arizona and spend a good share of the summer in Washington State. Usually we leave in late May or early June. We make a leisurely trip north, taking a couple of weeks, with stops along the way to visit family and friends. This year was different. We weren't able to leave until mid-July and we didn't have time for visits on the trip north.

Just getting ready to leave overly warm Arizona was a challenge. Jim needed several unplanned-for doctors appointments first. We finally left with stitches in his arm where the doc had removed a skin cancer. Nurse Helen removed the stitches and that is now fine. The thermometer hit 120 degrees before we were finally able to pack up and go. We managed a marathon five-day trip in the motor home, driving 7-10 hours a day to arrive in Kettle Falls WA, up near the Canadian border for a family reunion I'd been helping to plan. Then we went from there to the family farm where my daughter lives for some more family time. Both were enjoyable but we ate something...or did something...and we've been laid low with digestive problems ever since. (I definitely do not recommend living in a motor home with two people with diarrhea!)

Jim's illness was more serious than mine. It was also more worrisome because anything stressful can trigger his Crohn's disease which has been thankfully dormant for over a year. Thus, I have had the honor of being caregiver when I wasn't feeling my best. I am blessed that even when he hurts, Jim is a gentle patient. Even so, we are both stressed and that of course, makes everything worse--and the likelihood of the Crohn's greater although so far, it is still quiet. The whole thing is a vicious circle that is hard from which to escape The difference for us is that we know that we will both recover and be able to move on with our lives. Our hearts go out to all of you who are dealing with less temporary situations.

We are now on our own in a favorite RV park. I am feeling better and we hope that soon Jim will too. From the time we left until now, we've not opened our laptops and so this is the first chance I've had to post. I think that is the longest I've gone without checking at least my email for over a decade! Sorry this is so late. I planned to post ever two weeks but it's been much longer. That's the way it is when life throws you curve balls.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.