Saturday, October 31, 2009

Remembering Mom

Two years ago today my mom passed from this life on to the next. The last years of her life were punctuated by the horrors that Lewy* brought. Today, however, I choose to not dwell on those times and instead dwell on the amazing woman that was my mother.

I have so many good memories of Mom that it would take many, many blog posts to cover them all. Here are some that come to me today….

*Putting together my “grown up lady” Halloween costume one year.

*Sitting in the Granada on her birthday waiting into the wee hours of the morning for the tow truck to come and tow my brother’s Mustang. Someone had cut the battery cables while I was at work and we were concerned that the person may have been planning to come back and steal the car if we left it sitting in the parking lot over night. (Have you thanked me for saving your baby, big brother!?!)

*Mom being so excited about being a Grammy, but being “too young” to be a grandma. Thus she became GrammyMommy to six grandchildren.

*Her laughing at me and teasing me for years because I tried to outdo her by making a perfect angel food cake from scratch….still haven’t managed to accomplish that one!

*Late nights in the trailer park in Altus when she let me get up after the girls were asleep. That was when she taught Thomas and me to play Canasta, when we tried silly experiments like what Dr. Pepper tasted like warm, and when we had our first talk about the birds and the bees.

*Coming into the living room the summer I lived with her and Dad to see them sitting on the couch holding hands, still so much in love after all these years.

*Her telling Dad, “You’re a good man, Charlie Brown.”

*The laughter she shared with her five crazy sisters.

*The long walks we took in the evenings after dinner the summer I lived with her and Dad before moving to Oregon.

*Her beautiful smile and indomitable spirit.

Mom was loved by many and I think I speak for my siblings when I say that we were incredibly blessed to have her as a mom.

I love you and miss you Mom, but you live forever in my heart.

*Lewy Body Dementia – for more information visit the Lewy Body Dementia Association

Friday, October 30, 2009

I'm the Short One

I came around the corner of the grocery store aisle on a mission to find the Diet Pepsi and almost ran over a little lady with my cart. She was standing in the middle of the aisle and when she saw me she smiled.

“Can you help me?” she asked. Then she pointed at some bottles on the very top shelf.

She could barely reach the shelf much less the bottles. All she needed was for someone to get several bottles down for her. For one brief moment I felt tall! I helped her and went about by business.

As I finished my shopping I couldn’t help but be amused by that incident. You see, rumor has it that my siblings got all the height in the family while I got all the brains and beauty. Okay, so it’s not really a rumor, but just something I say. While I am not overly short I am the shortest among my siblings. I am not the one people usually ask to reach things on the top shelf. In fact, in my kitchen I have a little stool that I made in 8th grade wood shop. I use it often so I can reach the top shelf of my cabinets. Nope, I’m usually the one asking for help.

This incident made me think. I view certain aspects of my makeup as weaknesses and other aspects as strengths. After helping the lady in the grocery store I realized that’s not necessarily the case. I am what God created me to be. I never know how He may choose to use me; sometimes it will be in what I consider to be my strengths, but others it will be in what I consider to be my weaknesses.

Thursday, October 29, 2009

Snow Day

Woohoo, snow day today! It’s not often the company I work for closes because of weather, but we are getting lots of snow around here these past few days. Today has been reminiscent of those school time snow days that we all loved as kids. Such possibility they held. So far today I have read the newspaper and worked on the puzzles, caught up on some reading, checked out some of my favorite blogs, snuggled with my kitty cat, and thought about some of the “grownup” things I should do like maybe cleaning the carpets or balancing the checkbook. Instead I decided to make a list of some of the things I am thankful for.

1. Having a warm, cozy home in which to ride out this snow storm.

2. Having a job to have a snow day from.

3. My sweet Wilson who is currently curled up on my bed taking a nap. When I walk into the room he will look up, un-tuck one white paw and wave at me. Such a sweet boy he is!

4. The beauty of the landscape covered in snow (I appreciate this more when I don’t have to be out on the roads that aren’t so beautiful covered in snow!)

5. Wireless Internet access that allows me to connect from anywhere in my house.

6. Not having cabin fever because I can connect with the outside world through the web and my phone :-)

7. My family.

8. A God who loves me.

9. Good books.

10. Diet Pepsi

Wednesday, October 28, 2009

How Many Pairs of Shoes Does a Girl Need?

How many pairs of shoes does a girl need? I don’t know the answer to that. What I do know is I like shoes; I have a lot of them. People who know me might be surprised by this statement since I tend to wear the same shoes over and over. But, I have had an obsession with shoes since about the 10th grade. Way back then I bought a really cute pair of blue corduroy flats for $7. Then I gave them to my sister and had her give them to me for Christmas! Since then I have accumulated more shoes than one girl can ever wear and periodically give them away to Goodwill.

Today I was watching the news and there was a story about Blake Mycoskie and Tom's Shoes. According to the web site Blake is the Chief Shoe Giver for Tom’s Shoes. The news cast said Blake describes himself as a Social Entrepreneur. He’s using his business skills to do something for the less fortunate. He traveled to Argentina in 2007 and came back with a desire to help the children he met. Tom’s Shoes, which stands for Tomorrow’s Shoes, grew out of that. The goal is to give one pair of shoes to a child in need with every pair of shoes purchased. “One for One. Using the purchasing power of individuals to benefit the greater good is what we're all about.”

Shoes for a good cause, a girl can’t beat that! I don’t own a pair of Tom’s Shoes yet, but Christmas is a coming. Maybe I will buy a pair and tell the family member who has my name for the gift exchange to consider my gift done :-)

Sunday, October 25, 2009


The LORD redeems his servants; no one will be condemned who takes refuge in him. Psalm 34:22

Friday, October 23, 2009

64 Days to Christmas!

Just a friendly reminder! I know some folks aren't wanting to think about it, but I am one of those freaks who puts my tree up early in the season (no, it's not up already, but probably in a few weeks) and begins to play Christmas music before everyone else. I love the sights, sounds, and smells of Christmas. My one wish is that everyone, myself included, would slow down at this time of year and enjoy the season. It's too easy these days to get caught up in the trappings of Christmas and forget to just relax and appreciate all the good things about the this time of year. So, I am sorry if I caused you stress by pointing out that there are only 64 days left 'til Christmas. Don't think about it as only 64 days left; think about is as 64 days to have fun and celebrate!

Wednesday, October 21, 2009

Blog, blog, blog

Have you noticed the preponderance of blogs on the internet these days? All it takes to get your thoughts out to the world is access to a computer and a connection to the world wide web. As I was reading a blog today I realized a couple of things. One is that I enjoy reading other people’s thoughts and their blogs. Two is that the world wide web is a really accurate description. With the advent of blogs the world is a little more connected.

Some people think blogs are a waste of time and are only for the narcissistic. I admit that I can get lost in time while perusing blogs, but I often come away changed by what I have read. Many bloggers have a list of their favorite blogs and with a click of the mouse you can jump off to read another blog. I haven’t made a blog list here yet, but I thought I would share some of my favorite blogs. So, here they are in no particular order.
Sunshine Days  is written by a young lady who goes to the same church as I do. We have never met, but I found her blog through a friend. What I love about this blog is that the writer shares her world in an unassuming way. Her Christian faith shines through, but also her humanness. She is what she is and is not afraid of that.

Scribble Chicks is a fairly new blog started by five Christian women authors. Their tag line is “A bunch of us pecking our way through the publishing world.” The women range from multi-published to a new author whose first book hits the shelves in January 2010. They have a theme each week and each one posts her thoughts on the theme. It has been great to read about their triumphs and challenges as they peck their way through.

Thoughts From Along the way  is written by a friend’s brother and his buddy. Jeff writes a little more often than Scott, but then again Scott is the father of a new baby and even I know that takes a lot of time. What I enjoy about this blog is the casual way faith is interwoven into the conversation. Jeff writes with a transparency that often hits me right in the heart. His faith is a down to earth kind of faith. He doesn’t get caught up in the trappings of religiosity but lives out his belief day to day.

Michael Hyatt is the CEO of Thomas Nelson Books. His blog is full of helps for writers. I like his no nonsense, pull no punches kind of style. He says it like he sees it.

Wanna Be Published, written by Mary E. Demuth is another help for writers. She provides great insight into the struggles would be writers face.

Terrible and Beautiful is another blog of a friend of a friend. Lorri is a young mom fighting a courageous battle with cancer. Hers is “a daily weblog of cancer, God, and life.” Despite having never met Lorri I have a great deal of respect for her. She has taken a horrible situation and sought the beauty that exists in life. She is determined to rise above the cancer and has chosen to keep living each day to the fullest.

And no blog list would be complete without a shout out to my new favorite author, Jennifer Valent.  Jennifer is the author of Fireflies in December and Cottonwood Whispers. In her blog she parlays her thoughts on the writing process. Her easy to read style shines through on her blog. By the way, if you haven’t read her books, I highly recommend them!

So, that’s a little taste of the blogs I follow. When you get a chance, feel free to cruise on over to visit with my web of "friends” and see what you think.

Monday, October 19, 2009

Catch Some Zs - Dementia and Sleep

Back in the 90s I decided it was time to go back to school to finish my bachelor’s degree. I was working about 70 hours a week between a full time job and a part time job. I was carrying a full-time work load at school. And I tried to still have a life around all of this. In the interest of getting everything done I cut back on sleep. I told people that I thought sleep was overrated and that I was weaning myself. During the week I would often sleep only two or three hours a night. Then on Saturday evening I would crash and sleep for hours. I managed to keep this schedule for a while, but then weird things began to happen.

Slowly, one by one I began to do strange things. I called to purchase a plane ticket and I couldn’t remember how to spell my name – the same name I had been spelling for about 30 years! Then one day I put soup in the microwave and when it was done the microwave was empty; my soup disappeared. I found it a while later in the drawer of the microwave cart where I put it instead of in the microwave. One night on my way home from work I stopped at a stop light and then couldn’t remember if I should turn or go straight. The final straw was the night I almost had an accident on my way home from school because I had traveled into the opposite lane of traffic and didn’t even realize it. Thankfully I didn’t cause an accident, but I finally knew that I had to cut something out of my schedule in order to get more sleep.

In our society today sleep is often the first thing people skimp on when their schedules get busy. Truth is I still do skimp. It’s hard for me to get a full 8 hours of sleep. Over the years, though, I have learned that sleep is more important than most of us think. It is not just lazy time; our bodies need it to be able to function. Lack of sleep has been linked to poor cognitive performance, diabetes, and increased body fat to name a few. Now research is showing that sleep deprivation may play a role in developing Alzheimer’s dementia.

Recently a research team at Washington University in St. Louis found that depriving laboratory mice of sleep increased levels of amyloid beta in their brains. Amyloid beta plaques are found in the brains of Alzheimer’s patients. Further study is still needed to determine fully what this means. However, understanding this connection will allow for better identification of people at risk for dementia as well as increase the possibility of finding a treatment for the disease.

So, while we don’t know for sure the role of sleep deprivation in dementia I think getting a few more z’s each day couldn’t hurt. Maybe I will go take a nap….

Michael Purdy. Sleep Loss Linked to Increase in Alzheimer’s Plaques. September 24, 2009 (accessed October 17, 2009)

Friday, October 16, 2009

Pampered Chef Party

Woohoo! I love Pampered Chef and tomorrow is my sister's party. Guess I might have to replace the melted rice cooker, but I am also excited to purchase some pie making items to assist me in my quest to make a great pie :-)

Wednesday, October 14, 2009

Do the Next Right Thing

Just do the next right thing. These words were spoken to me by a coworker once. She had heard them in a sermon. It sounds so simple, but is it really? Should it be easy? What does it say about a person if it’s not easy for them?

Just do the next right thing. The phrase came back to me recently and it has me pondering. Why do people find it so hard to do the next right thing? Mind you, I am not just throwing that out about people in general; I include myself in that question. Maybe it’s because we aren’t sure what the next right thing is. Or maybe it’s because we are overwhelmed about what it might take.

Sometimes it’s easy. We know the right thing and we know that we can’t not do it. Someone is hurt and needs help. Finding a wallet with a wad of cash in it, but also with identification of the true owner. Often we don’t have to think because the next right thing is innate. We just do it.

But what about those situations where there isn’t a right or wrong, just a choice? What about those situations where not doing it something terrible isn’t going to happen? These are the ones that I struggle with. Is the next right thing to sell my house and move? Is it to apply for that job that caught my eye?

And then there are the opportunities where the next right thing is going to be hard or take us out of our comfort zone. Fear can get in the way of doing the next right thing. It can hold us back and keep us from fulfilling the things we were destined to do. Fear can thwart our desires to move beyond our current life.

Earlier this week I wrote about Katie in Uganda. Katie is doing the next right thing every day. I don’t know Katie personally so I don’t know this, but from reading her blog I suspect she doesn’t question she just does. She knows what the next right thing is and she moves forward. I would love to sit down with Katie and talk to her over a cup of coffee. Does she fear? Does she waiver in her resolve to help? Does it come easier the more she does that next right thing?

Katie’s story got me thinking about my own life. I have known for some time that God has called me to the fight against Lewy Body Dementia (LBD). Before my Mom died I felt God also calling me to love and support the people who are care givers for loved ones with LBD and other forms of dementia. During the last years of Mom’s life I saw firsthand the toll that exacts itself on care givers. I watched as Dad gave his all to take care of her despite the weariness he experienced. I saw Dad keep doing the next right thing. I tried to share the responsibility with Dad so he could refresh and reenergize. As I did this I realized how many people are struggling to give the care that is needed and I felt the desire to help lighten that load.

For two years I have suspected that I should do something about this, but fear has held me back. What if I can’t do it? Will I have the strength that is needed? Will I have the time? It keeps coming back to me, this next right thing. I can hide from it for a while but then along comes a thing as simple as a blog by a young girl in Africa and then there is no place to hide. So, this week I did the next right thing. I signed up for the support group facilitator training offered by the Lewy Body Dementia Association. I submitted my information to the coordinator so she can post it on the web site. I don’t know what the next right thing is, but I am going to finish the tasks related to the training and then I will have an idea. I don’t need to know all the answers right now. I will just do this right thing and then do the next right thing.

Monday, October 12, 2009


When I have a free moment I love to read other people’s blogs. There are people out there who have awesome stories to tell and who share those stories with the world through the technology we have available. I have many blogs that I follow and my Windows Vista has a handy dandy little gadget that pulls the most current updates and posts them on my desk top. Each time I turn on my computer I can see if any of my favorites have been updated. I have actually been planning to do a post on blogs that I enjoy reading so I can share them with you. Then, last week, a Facebook friend posted a link to a blog and I decided I just have to share this one first.

When I first visited the Amazima site I was taken in by the picture in the header and the blog tagline…”on earth as it is in heaven.” I proceeded to read the post that I had linked to from Facebook. The story captivated me and I spent quite a lot of time perusing the blog and being more and more affected as I went. This website is testament to one girl’s desire to show the world love and to make one part of this earth as it is in heaven.

Amazima Ministries International was started by nineteen year old Katie Davis. Katie visited Uganda, East Africa in 2006 and was touched by the orphans she saw there. The plight of these children wasn’t something she could forget. In 2007 Katie gave up everything she had in the United States and moved to Uganda to minister to the poor. At an age when other girls are thinking about college, careers, and boys Katie could only think of those poor hearts that have no one to love them and nurture them.

The reality of how much Katie has sacrificed is evident in every post. She writes honestly of what one would consider the challenges of living in a third world country. Yet she takes it all in stride when the electricity is out for a week at a time or she finds she has a parasite in her digestive tract because of the unsanitary conditions she encounters. Nothing about her life is the same anymore.

What did you do Saturday night? My regular Saturday routine is to go to church with my Dad and have dinner with the family. It was my turn for dinner this week and I managed to cook dinner without burning up one of my modern appliances. Every Saturday Katie feeds 200 children dinner, she bathes them, and she loves them. They have a huge slumber party with children sleeping all over her house. In the morning she feeds them a warm, hearty breakfast and sends them home refreshed. Every Saturday night she does this. I cook dinner for my family of five only once every three weeks and sometimes that seems like a lot. I am in awe of this one young girl that I have never met.

Katie is 20 years old and she has a family here in the States that love her very much. She misses them and loves them. In Uganda this 20 year old has a family of 14 orphans that live with her and that she takes care of every day. This is a huge responsibility for anyone, much less a 20 year old living in a third world country. But every day she gets up and she continues on. She is determined to love these children with everything she has.

Among the many things she has learned while in Uganda is that there is no public school system and that it is expensive for children to go to school. Katie decided to change that so she created a sponsorship program that currently sends 400 children to school. She decided she needed to build a school for the children so she found land near her home that she can buy for $6,000 and she set out to find a way to raise the money. More information about helping Katie can be found on her website, Amazima Ministries International.

I knew there had to be some meaning behind the name of her foundation. Amazima is the Lugandan word meaning the truth of Christ. What an appropriate name for this ministry. Katie is out there every day showing the truth of Christ. She is his hands and feet in Uganda. She is His love pouring forth to the orphans who need it most. She has given her life over to Christ so that He can work through her. The truth of Christ is that if we all listened to Him our lives would probably be very different; I know mine would.

Sunday, October 11, 2009

Thoughts for a Sunday

I will be glad and rejoice in you; I will sing praise to your name, O Most High.
~Psalm 9:2

Wednesday, October 7, 2009

Great Pie Caper

The text had three little words on it…I like pie. It made me laugh. I had been texting my sister about this idea I had for a blog series and was talking about learning how to make a really perfect pie. But, how would I eat as many pies as it might take to hone my pie making skills? I had the brilliant idea of taking the pies to work and letting my coworkers sample them. Apparently my family wants to sample also!

Why pies you ask? Well, because I love pie and because one of the characters in the novel I am currently writing (and which I hope becomes my first published novel) is a pie baker. As I was thinking about my work and looking for ways to stay inspired to keep writing I realized that I am not a pie baker and so I was a little tongue tied when it came to writing specifics about my character making pie. I can do cookies, cakes, brownies, and bread. Making a great pie crust, though, isn’t something I do well. I began to think about practicing to see what would happen if I really tried. Then I remembered seeing the movie “Julie and Julia.”

Like many bloggers I was inspired by the movie to blog more intentionally. Julie Powell was looking for a subject to blog about. She decided to cook her way through Julia Child’s cookbook and document her progress through a blog. The movie really was kind of cute as it toggled back and forth between Julie as she cooked and blogged and Julia Child as she worked many years to write her famous cookbook. I went home thinking I wanted to do something fun that my readers would enjoy. Now, mind you I never set out to write a food blog. It was never my intent to cook my way through a cookbook. I am not trying to copy the movie. I just know it is said that an author should write what she knows. I don’t know pies, but I can do the research. Pies just made sense to have fun with and I was able to tie it into my writing. The idea grew until it had become this great pie caper.

The novel is actually the coming together of two stories that I had been playing around with for a while. The first one I started on a Sunday afternoon a couple of years ago. It was while I lived with Mom and Dad during the months after Dad’s quintuple bypass. We had pie for dessert the night before and I had pie on the brain. The left over pie in the kitchen whispered my name and I was trying to ignore it. I pulled out a pad and began to write. The original story really didn’t have anything to do with pie, but then suddenly one of the characters made pie.

That character used a term for the pie crust that I heard from a coworker’s husband; he called the crust the pie bones. I laughed when I first heard it, but soon appropriated it and made it my own. I may be crazy but it makes sense to me; maybe only to me but then again I may just be more evolved than other people :-) When you think about it a human without bones would just be a big old blob and a pie without good bones is just a big old blob also. And, pie bones made my mom laugh so I used it often to see her smile and hear her laugh. To be truthful, while I do like pie, my favorite part of the pie is the bones. I could eat the crust without any filling and would be perfectly happy.

Just a few months ago I began working on another story that came to me as I drove to work one day. As I played with one scene over and over in my mind I realized it wasn’t working because it needed to be combined with my pie story. Pretty soon the two tales were twisting together into a major theme and I began to think of making them into a novel. That’s how it all began.

Now I had a work in progress and an idea to keep myself inspired. I went to the bookstore and bought a very large book called The Pie and Pastry Bible. It’s huge! And it has lots of tantalizing recipes and pictures that make me just want to eat pie. It has all kinds of hints and helps to making the perfect crust. Did I mention the book is huge? I am a little intimated by the whole process. The book talks about all the right ingredients and how important it is to keep the dough cool enough in order to make the perfect flaky crust. Oh my! I haven’t tried any of the recipes yet, partly because I haven’t had the time, but mostly because I fear failure and I realize I may have to make a lot of pies before I get the process down pat. But, never fear I am going to overcome my nervousness and give it a go. If you have read my last post about melting my rice cooker in the microwave I assure you, I will do my very best to not burn down the house in the process!

As I try the recipes I will blog about them here, take some pictures of pies that I really made (the picture here is a piece of pie I bought premade), and in the process give you a taste of my novel. It is my hope that the morsels I give you will make you want to run right out and buy the book when it is published….if I can do that, it will indeed be a great pie caper!

Monday, October 5, 2009

I'm Melting, Melting

Okay, not me, but a kitchen utensil....

This week I was working from home and decided I would make some rice to go with my lunch. I used my Pampered Chef Microwave Rice Cooker; measured in the rice and added water. Made sure (so I thought) to put plenty of water in so it wouldn’t cook dry. Punched the buttons on the microwave and went back to work. Sometime later I smelled something bad and went into the kitchen to check what was up.

The timer showed 3 minutes left in the cooking cycle….I really couldn’t remember when I put it in so I don’t know how long it cooked. Smoke poured out of the microwave when I opened the door. I reached in to grab the cooker but couldn’t touch it because of the heat. Meanwhile, Wilson was in the living room coughing because of the fumes. Using hot pads I tried to move the cooker out of the microwave, but it was melted to the microwave turntable. The outside of the container was sticky and soft. Inside the rice was charred and the clear plastic disc that went in the top to hold in the steam was completed melted through. Thankfully I didn’t have to call the fire department!

It was one of the colder days so far this year and when I opened the windows to air out the house the heater began to run. It continued to run for an hour as I had to keep the windows open to clear out the noxious smoke. I found the cat upstairs on the bed with his nose tucked beneath his paws in an attempt to not have to breathe in the awful smell.

I never had rice for lunch that day. The reek of burnt plastic still lingers in the house and I dont' know if it will ever come out of the microwave. The microwave cooker has been dumped in the trash. I would like to say it was a defective product, but it was Pampered Chef and I know that it couldn’t have been defective. Besides, I have used it many times over the two years I have owned it and I have never had a problem with it. Sad to say, it was more than likely operator error….I either didn’t put enough water in it or put it in for way more time than I thought, probably both.

So, it is no secret that I can be somewhat dangerous in the kitchen. During my short tenure as a Pampered Chef consultant I managed to do several crazy things like sending almonds scattering all over my hostess’ kitchen and then there was the trip to the emergency room because of an unfortunate apple wedger accident. Come to think of it, the majority of my emergency room trips have been the results of kitchen accidents. But, I am brave and I like to cook so I will continue to try things in the kitchen and hope for the best :-)

Sunday, October 4, 2009

Sunday Morning

I sought the LORD, and he answered me; he delivered me from all my fears.

-- Psalm 34:4

Saturday, October 3, 2009

Round the Corner

Photo ©Thomas H. Fickas Jr

Still round the corner there may wait,

a new road or a secret gate.

J.R.R. Tolkien

Friday, October 2, 2009

The Big Three

Lewy Body Dementia (LBD) has three core symptoms. With a disease such as LBD a doctor can't definitively diagnosis it. Currently, the only way to do this is on autopsy. However, research has shown that these three big symptoms give a pretty good idea of what is going on. The physician rules out any other possible cause of the symptoms a person is having and then based on criteria relating to these and other symptoms gives a diagnosis of probably LBD or possible LBD.

My mom was given a diagnosis of probable LBD. We didn't request an autopsy so this is the best we can do. Yet, when I read the criteria, I have no doubt that Mom had LBD. Reading the list of symptoms was like reading a history of what she was experiencing.

The first core symptom is fluctuating cognition. In many forms of dementia the patient begins a downward spiral and it just gets worse. In LBD, the patient can be really bad one week, day, hour, or even minute and seem fine the next. Also, in LBD, the person loses the ability to do the basics. They forget how to feed, dress or take care of themselves. Sometimes they will begin to do something and then lose track of what they were doing. With Mom, sometimes she would get up and start to head back to the bathroom and then halfway there forget why she was up.
The fluctuating part of the disease is what causes many problems. Early on, it may be easier for the loved one and their family to believe that nothing is happening. As the disease progresses, this fluctuation can cause some to not realize how serious it is and how much help the patient might need. People who aren't with them everyday may think they are faking it or making their symptoms out to be worse than they are. My mom said on several occasions, "I wouldn't wish this on anyone." I think this sums it up really well. Why would someone make up these types of symptoms or try to exaggerate?

The second core symptom is hallucinations. Other forms of dementia do have a component of hallucinations. In LBD the hallucinations are well formed and frequent. Mom saw people. Others see animals or inanimate objects. The literature says these hallucinations are not disturbing to the patient. I don't think I agree with that. I know for a fact that "the people" bothered Mom. And I know from talking with other care givers that their loved ones are bothered by the hallucinations.

The problem with the hallucinations is that finding the right drug to treat them is often hard. LBD patients can be very sensitive to drugs, especially ones used to treat these types of symptoms. We were never able to find anything to eliminate the hallucinations. We turned instead to distraction. When we realized "the people" were around we would try to get Mom thinking of something else. We used photo albums with family pictures to spark stories of past events to get her mind off the hallucinations. Humor worked sometimes, also. My brother once told her not to worry about the people because he was big enough to deal with them. I would sing to her and be silly. If nothing else worked, we would open the front door, tell the people to get out and not come back.

The third core feature is what is called spontaneous parkinsonism. What this means is the patient experiences Parkinson's type symptoms. They may have stiff muscles, a shuffling gait, or tremors. At different times throughout the course of her disease, Mom had all of these symptoms. Early on it was just the slow loss of use of one arm, then came the tremors in the same arm. The last few years she often shuffled when she walked and her muscles became very rigid.

We used some medications to try to control the symptoms. However, we did have to learn to deal with them. We helped her get up and down. Dressing herself was hard because of the stiffness in her arms and legs. The tremors were probably the worst part of this. When sitting at the table her arm would jump so hard it would hit the edge of the table. My brother finally bought some pipe insulation, slit it open the long way and taped it to the edge of the table to cushion the blow when she was jumpy. We put sliders on the bottoms of the chairs to help push them in and out from the dining table.

These three features are the core of LBD. There are many other symptoms that wreak havoc in a patient's life. A patient can have any combination of these symptoms and often that changes over time. What is true of their condition today may not be tomorrow. Because of this, treating LBD can be challenging. One physician told us that it was simply a matter of trial and error to find the right mix of medications. Finding other ways of dealing with the symptoms is often an important adjunct to the drug therapy.

So much is not known about Lewy Body. Patients and loved ones are left with trying to deal with this. My hope is that someday there will be the support and information available to anyone who finds they or a loved one has this dreadful disease.