Lewy Body Dementia Month to Remember

It's that time of year again. October for the last few years has been designated as the Lewy Body Dementia Awareness month to remember.

Do you know Lewy? Few people do. Sadly, my family does.

Lewy Body Dementia affects 1.3 million people in the world today. It has always lived in the shadow of Alzheimer's and Parkinson's, but it is a separate condition and just as devastating.

My mother had Lewy for at least the last ten years of her life, although we didn't have an official name for it until 2006.                                      

Lewy is a progressive form of dementia with hallucinations, fluctuating cognition, and Parkinson's type symptoms.

This month is a time for remembering those who have been taken too soon by this horrible condition. It's also a time to educate the world about it.

For more information, please visit the Lewy Body Dementia Association at www.lbda.org

You can also read more about my families' experiences with LBD by reading these posts:

http://www.rockymountainwriter.com/2010/10/do-you-know-lewy.html

http://www.rockymountainwriter.com/2010/10/did-you-know.html

http://www.rockymountainwriter.com/2010/10/couple-years-ago-i-wrote-post-about.html

http://www.rockymountainwriter.com/2010/04/i-am-angry.html

http://www.rockymountainwriter.com/2009/10/big-three.html

http://www.rockymountainwriter.com/2009/04/two-pictures.html

http://www.rockymountainwriter.com/2008/09/go-purple-for-dementia.html

http://www.rockymountainwriter.com/2008/09/thing-about-lewy.html

October is Lewy Body Dementia Awareness Month

This is a repost, but I thought it was appropriate since October is Lewy Body Dementia Awareness month.



October is Breast Cancer Awareness month and everywhere I look I see pink. I picked up a sales circular for an office supply store from the Sunday paper and was blasted with a jolt of pink. These days you can buy pink phones or bikes or yogurt and a portion of the proceeds support breast cancer research and awareness. The pink items are part of the fundraising done by Susan G. Komen for the Cure. In the last few years Komen and breast cancer have become closely associated with the color pink.


Don’t get me wrong, I am all for breast cancer awareness and research, but I have often wondered at how this happened. It’s amazing, really; the color pink on a product immediately brings to mind the fight against this deadly disease.

Today, Nancy G. Brinker, the founder of Susan G. Komen for the Cure was on the Oprah show. This was the first time I have really heard the story of Susan G. Komen. She was 33 years old when diagnosed with breast cancer in the 70s. Before she died she made her sister Nancy promise she would do everything in her power to fight the disease. Out of that promise grew the amazing organization that has done so much for beginning to tame this disease.

As I listened to Nancy talk about what it was like for Susan and her family as she was struggling with the disease in the 70s it struck me how much it mirrored what my family went through when Mom was diagnosed with Lewy Body Dementia (LBD.) Nancy talked about the lack of support groups, information, and understanding at the time. That is what it is like for LBD patients and their families now.

Today breast cancer is well known. Information is more abundant and because of the work of Nancy Brinker women don’t have to feel so alone when the diagnosis comes. Pink has succeeded in giving a face to this illness.

When Mom was diagnosed with LBD we found the Lewy Body Dementia Association. This young organization is working to increase research and raise awareness of the disease but we still have a long way to go. As with so many causes these days the LBD as well as the Alzheimer’s Association has taken a color to signify their fight. For the groups fighting dementia that color is purple. During recent Memory Walks for the Alzheimer’s Association purple balloons, t-shirts and banners were everywhere. For years I have been curious about how to get people to know purple like they do pink.

Today I learned how Nancy took her family's fight and turned it into a nationwide initiative. It’s a lofty thought, but as I watched I formulated ways of moving our fight into the same type of nationwide initiative. I don’t want to draw attention from breast cancer, but I do want to draw attention to the plight of dementia sufferers. In a perfect world this wouldn’t be necessary. I live in an imperfect world and so I have decided to wave my purple banner high.

Someday people will see purple and know that dementia is a horrendous disease. People will be able to purchase a purple phone or bike or yogurt and know that their money is supporting something important. They will understand that their jokes about having Alzheimer’s really aren’t that funny. They will understand and the stigma associated with dementia will begin to disappear. They will understand that others have walked this road and they don’t have to walk alone.



For more information about Lewy Body Dementia please visit the LBDA website

Weekend in Review

Happy Monday Readers! Hope your weekend was good. Mine was busy, but that’s pretty much the norm for everyone these days.


I spent the evening Friday with my dad. It was my weekly clean his house time. That means we usually talk for a couple of hours before I actually get to the toilets and floors. We talk about things that happened at work. Well, I guess I should say that I talk about things at work ‘cause he usually can’t get a word in edge wise when I’m talking! Dad and I have good conversations about politics and religion. While we think a lot alike on many things he often says things that really make me think. That’s a good thing. Let me tell you, if the president and congress would listen to me and dad they could fix the problems of this country pretty quick.

Saturday started bright and early. It was a weekend day when I woke the cat up instead of vice versa! He usually has to work pretty hard to get me out of bed on the weekends.

Speaking of getting me out of bed….when I have something important to tell Wilson and he’s not paying attention to me I will put my hand under his chin and lift his little face so he can look in my eyes and see how serious I am. The other day he was trying to get me up to feed him breakfast and I was ignoring him. Finally he reached over and put his paw under my chin to lift my face. In other words, “Listen to my words Mommy, this is important.” He’s done it twice again since then. That’s my boy.

Anyway, Saturday was a brilliantly beautiful morning in the shadow of our mountain. The sun shone and the air held just a bit of a chill. My friend Renee and I headed out to the park to walk in the Walk to End Alzheimer’s. You all know that since my mom came down with dementia this battle is very near and dear to my heart. This is the fourth year the Lewy Ladybugs have walked to fight dementia. It’s a nice brisk walk on a fall morning and it supports a great cause.

Saturday night is always my night with my dad. We go to church and then do dinner either at my house or his house. This tradition started when Mom got to the point that she couldn’t go to church. I would stay with her and Dad, my sister and the kids would go to church and bring home communion for Mom. Then we did family dinner. This tradition is something that we have continued and now that my sister’s family moved out of state it’s just me and Dad. I look forward to Saturday nights with Dad.

On the subject of dementia, did you all hear about Pat Robertson and how he believes that because Alzheimer’s is a sort of death and that divorcing a spouse with it is justifiable!?! I have to say that I about fell out of my chair when I first read this. I can’t believe that a man who purports to have studied the Bible would come up with this conclusion. Life isn’t fair and marriage is tough. People make a vow to honor in “sickness and in health.”

Yes, it is true that dementia is a sort of death because your loved one is often gone long before their body gives out. But, they are still the person you married. I walked alongside Mom and Dad through this and I have to say that watching my father was one of the most amazing things ever. His love never wavered. He gave up large parts of himself and his life to care for Mom. It was the most beautiful and tender things I have ever witnessed. I know it had to kill him inside every day, but he continued on. He did it because he loves my mother and he made a vow and he stood by that vow even when times got tough.

I am disappointed that a man of faith would say such a thing and advocate divorce. He really needs to take a look at his heart and his priorities. I pray that if anything horrible were ever to happen to him that his wife, DeDe has more compassion and commitment to her marriage vows than he seems to have.

So, that was my weekend. How was yours?

Why I Fight Dementia - Repost of Two Pictures

The Alzheimer's Association Walk to End Alzheimer's is gearing up all over the country. I am once again forming a team to walk. My mom had Lewy Body Dementia, the 2nd leading form of dementia. I walk to help raise funds to help people with dementia. I also walk to help raise awareness of Lewy. I wrote this a few years ago. It highlights why fighting dementia is so important to me.

Two Pictures

On the shelf in my cubicle at work are two pictures that tell a story; one of happy times and love, but also one of hard times and struggles.


In one picture I stand between my parents on my graduation day in 1998. My mother is a vibrant 57 year old. She smiles for pictures and tells people how proud she is of her daughter. This is the mom who taught me to be strong and independent. Mom raised me to be someone who pursues her dreams. She believed in me and was proud of the fact that I could do anything I put my heart into. Mom instilled in me the belief that I could do anything, be anything. In reality I am who I am because of my mother.

What that picture doesn’t show and that we didn’t know at the time was that tangles in Mom’s brain were beginning to change her. Lewy had already taken hold at that time and had begun its insidious creeping, overtaking, destroying.

In the second picture Mom is surrounded by my sisters and me; the strong women she raised. This picture was taken in May 2007 and is the last picture of Mom before her death. In the almost ten years since the first picture she has become frail, a shadow of her former self. Lewy has stolen her ability to do the basic things in life. The family that she raised is now taking care of her. She showered us with love over the years and the family returns that love.

It’s been almost four years since Mom died and I still think of her often. I still talk about Lewy and I still fight dementia. I won't stop until dementia doesn't exist or until I am no longer on this earth.

The Experience of Dementia as a Journey ~ Author Unknown

My friend, Kathy over at Living with a Thief Named Lewy is an amazing woman. Her husband has Lewy Body Dementia. Kathy blogs honestly about the good and bad of being a caregiver to someone with dementia. She has experienced all of the tough times that Lewy brings, but she also knows those amazing, special moments that are buried in the world of caregiving. It's those moments that keep a caregiver going.

Kathy recently posted this story after finding it on one of her friend's blogs. I wanted to share it here on the mountain also. A lot of people who haven't been closely affected by dementia don't understand. I think this little story does a great job of presenting what it more than likely feels like to live in a world that no longer makes sense.

The Experience of Dementia as a Journey –Author Unknown


I am going on a long journey by train. As I begin, the city skyscrapers and country landscape look familiar. As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable. The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different. The buildings have odd shapes and the trees don’t look quite the way I remember them. I know that they are buildings and trees, but something about them is not quite right. Maybe I’m in a different country with different architecture and plant life. It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed. They are barely taking notice of the passing scenery. Maybe they have been here before. I ask some questions, but nothing seems different to them. I wonder if my mind is playing tricks on me. I decide to act as if everything looks all right, but because it does not, I have to be on my guard. This places some tension on me, but I believe I can tolerate it for the remainder of the trip. I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong. Everything looks strange and unfamiliar! There is no similarity to anything I can recall from the past. I must do something. I talk to the other passengers about the strangeness I feel. They look dumbfounded and when they answer, they talk in a new language. Why won’t they talk in English, I wonder? They look at me knowingly and with sympathy. I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going. The only answers I get are in this strange language, and even when I talk, my words sound strange to me. Now I am truly frightened.

At this point, I figure that I have to get off this train, and find my way home. I had not bargained for this when I started. I get up to leave and bid a pleasant goodbye. I don’t get very far, though, as the other passengers stop me and take me back to my seat. It seems they want me to stay on the train whether I want to or not. I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening. Strange, inhuman-looking beings peer into the window at me. I decide to make a run for it. The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car. There’s a door! It is difficult to push, but I must. It begins to open and I push harder. Maybe now I will get away. Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train. I hear the door shut. They take me back to my seat. I realize now that I will never get off this train. I will never get home.

How sad I feel. I did not say goodbye to my friends or children. As far as I know they do not know where I am. The passengers look sympathetic, but they do not know how sad I feel. maybe if they knew they would let me off the train. I stop smiling, stop eating, stop trying to talk, and avoid looking out the window. The passengers look worried. They force me to eat. It is difficult because I am too sad to be hungry.

I have no choice now. I have to go along with the passengers because they seem to know where the journey will end. Maybe they will get me there safely. I fervently wish that I had never started out on this journey, but I know I cannot go back.

15 Million Unpaid Workers

Did you know that approximately 15 million people* are unpaid caregivers to people with Alzheimer's and other forms of dementia?

If you've ever taken care of a sick loved one you can probably relate to the fact that caregiving is hard.  The job of caregiver is often a 24/7 position with little or no vacation and sick time. It's constant and it can be overwhelming.

One of the important aspects of organizations such as the Alzheimer's Association and the Lewy Body Dementia Association is the support they offer caregivers.

This is one of the reasons that I am walking in the Alzheimer's Association Walk to End Alzheimer's. It's a great way to help an important cause. You can find out more about walks in your area by visiting the walk page.

* Source: Alzheimer's Association

13,208

That's how many teams have been formed to help fight Alzheimer's in this year's annual Walk to Remember. Are you part of one of those teams? I am!

Here's the thing about Alzheimer's, Lewy Body Dementia, Vascular Dementia, and other forms of dementia - more and more people have loved ones, friends, or coworkers that currently deal with these conditions. If you don't now, chances are good that within the next year you will come in contact with someone that does.

I believe that as the baby boomers move into their golden years this country is going to see increased numbers of people with dementia simply because the sheer numbers of this generation. I believe that we will hear more about these conditions because their generation has been known for speaking out. And, I believe that those of us coming behind them will be faced with tough situations and decisions as parents and aunts and uncles find they need help.

Many of you know that my mother had Lewy Body Dementia for about 10 years before she died. My family has faced the questions and circumstances that go along with dementia. It's my goal to keep fighting so that the coming generations will have more answers and resources.

I walk because any advances made in the fight against Alzheimer's will ultimately help other forms also. I also walk because several of my mother's aunts and uncles have or had Alzheimer's.

Walking is an easy way to help. All it requires is signing up, joining a team or creating a team, and raising some money. There are no minimum fund raising levels or entry fees. Every little bit helps.  It takes a few hours on a weekend morning. The course is usually 5k or 3.1 miles. At our local walk there is even a portion that is fairly level and paved so that people in wheelchairs can participate.

To find a walk in your area and to sign up just visit the Alzheimer's Association web site.

Walk to End Alzheimer's

There are some things in this world that I just don't like. Way, way up on the list of things I don't like is dementia. It may rank number 1, that's how much I dislike it.

You may know that dementia has messed with my family. It makes me angry when something messes with my family. I wrote a post on my anger about dementia. I'm fighting it and will continue fighting it. A couple of things are happening in the next few months that I will be writing more about in upcoming posts.

My mother had Lewy Body Dementia. You can read more about it by clicking the tab at the top of  the page. It is related to Alzheimer's, but is a separate and distinct disease. I support the Lewy Body Dementia Association. They will be sponsoring a Month to Remember in October and I will be giving more information in the weeks to come here on my blog.

I also support the Alzheimer's Association because we also have this form of dementia in our family. Each year the Alzheimer's Association has walks all over the country to raise money and awareness. My family participates in this walk and I would like to ask you to consider joining a walk in your area. Check out this video for more information.

Exciting Research into Memory Switches that Could Help Dementia Sufferers

This week the news came out that researchers have found a way to switch memories on and off in rats. The news came from the University of Southern California where Theodore Berger and a team of scientists worked with Wake Forest University on the research.


When I first saw the title it reminded me of the movie Eternal Sunshine of the Spotless Mind where the main character’s memories were erased in order to forgot lost love. I guess that’s one way of dealing with exes. The movie freaked me out a little bit and I wondered about technology that could do such a thing.

The research into memory switches, though, opens exciting possibilities for dementia sufferers. One of the main issues with dementia is that people forget. With my mom she forgot how to do everyday things like feed and dress herself. Others forget people or memories. It’s emotionally tough for the person with dementia and their loved ones.

If this research continues to show promise and eventually becomes something that is used in humans it would bring a new level of treatment for many. It would mean a restoring of quality of life for a lot of people.

The full article "Restoring Memories, Repairing Damaged Brains" can be found on the USC web site.

Do You Know Lewy?

Do you know Lewy? It’s easy to think that dementia such as Lewy or Alzheimer’s affect older people. Truth is, though, that dementia has no age limit on either end of the spectrum. In fact, I am hearing of more people who are young with symptoms of Lewy.

I would like to give you a brief glimpse of Lewy.

Lewy is one of my Facebook friends who is in his mid 40s, just a few years older than me. He writes frequently on Facebook about his struggles. I admire his outlook on life and the desire to make a difference for other people even in the face of what having Lewy means.

Lewy is the husband of another friend I also met through cyberspace who is also my age. She blogs about how Lewy has changed their lives. She deals with some tough things in life right now. Through it all the love for her husband shines through. Years ago she promised to love him and that is exactly what she does. No matter how hard life is with Lewy she does what needs to be done to care for him.

Lewy is the woman who bravely nursed her father through his battle with the disease. Now she has been diagnosed with probably Lewy also. Still, she puts herself out there to give support and love to other Lewy caregivers because she’s been there. And she’s not afraid to speak out about how it is affecting her.

Lewy is the mother of a married daughter. Day in and day out she sees Lewy affecting her mother. She is doing everything she can to help make her mother’s life better. In her search to improve quality of life she isn’t afraid to try the unconventional therapies in addition to what little medicine has to offer.

No, dementia knows no boundaries. It doesn’t discriminate in regards to gender, age, or race. It can strike anyone. Please remember these and the millions of others who are walking every day in the shadow of Lewy. They need our love, support, and to know they are not alone.

What Exactly Does Fluctuating Cognition Mean!?!

A friend I met through Facebook posted this article on his page today. I felt it did a good job of describing the types of cognitive problems Lewy patients have and how they are different from Alzheimer's.

Mental Help Web Site



I didn't have a chance to write a post last night so I was glad that I saw this article. Last night after having dinner with my dad, brother and sister-in-law in celebration of Mom and Dad's anniversary we went back to Dad's house. We let his little terrier mix dog out into the fenced back yard to "do his business." He was attacked by a Husky wolf mix dog that lives down the street who had jumped the fence and was in our yard. Scamp has bruising and gashes on both sides of his body near his front legs. As I write this he is at the vet undergoing surgery to repair the wounds. I just didn't have a lot of energy left after that to come home and write a post.

Did You Know!?

• Lewy Body Dementia affects 1.3 million people in the US

• Lewy Body Dementia is currently under diagnosed

• Estelle Getty who played Sofia on The Golden Girls had Lewy

• LBD (and other forms of dementia) are more than just forgetting - they can affect multiple body systems

• Lewy bodies which are plaques in the brain were first discovered by Frederich Lewy in the early 1900s

• There are currently LBD support groups in 31 states

• You can volunteer to help the Lewy Body Dementia Association even if you don't live in Atlanta - manyof the opportunities available can be done from your home or in your local community

• Lewy Body Dementia has symptoms that are similar to Alzheimer's or Parkinson's

• LBD patients can have problems with neuroleptic drugs which are often used to treat hallucinations which is one of the hallmark symptoms of Lewy

These facts can be found on the Lewy Body Dementia Association web site. The web site is chock full of information and support. You can also find out about volunteer opportunities on the site.

A Little Purple

A couple years ago I wrote a post about Susan G. Komen and her sister. I wrote about how I was intrigued by the whole pink movement and the awareness of breast cancer it built. At one time breast cancer was a taboo subject and women (men, too) suffered in anonymity. Today people openly talk about it and thousands of dollars are poured into research and creating better ways of treating it. And, today, there are support groups for people with cancer so that they can talk to others who understand what they are going through.


I have a friend who is a breast cancer survivor. She talks freely about her cancer. She can do so because Susan G. Komen made it okay to talk about boobies. This friend is committed to supporting others on their cancer journey. She supports the good work that Susan G. Komen does and she is grateful for the gains made because of this work.

When I wrote my post about going purple for dementia I didn’t do it for recognition. The thing about Susan G. Komen is that few people know her sister’s name; the sister who started the whole movement lives in the background. She doesn’t mind that. It’s not about her; it’s about Susan and the millions of others who deal with cancer. True, someday I’d like people to be aware of Lewy Body Dementia (LBD), Alzheimer’s, and other forms of dementia as they are about breast cancer. I want to help remove the stigma of dementia. And, like Susan’s sister I want people to understand the harshness of this disease so that they are moved to action.

Understanding is so important. The other morning I had the radio on in the car. The morning show was doing a quiz related to pop culture. The young caller said, “Oh I can’t remember the name of the star’s character. I’ve got Alzheimer’s.” And they all laughed at that. Susan could talk about her breast cancer and these days people with dementia are the butt of jokes. So I write and I talk and I post on Facebook about LBD and dementia. If the nation had a go purple day or month more people would know that there isn’t anything funny about dementia.

Dementia patients wish they’d forget inane stuff like the names of stars in movies. Instead they forget their spouse, children, and grandchildren. They forget how to feed themselves and dress themselves. They lose bits and pieces of who they have been all their life. Large parts of who they are get locked away inside them while the world goes on and mocks their illness. It’s a tragedy of growing proportions.

This week the LBDA is hosting the first ever Awareness Week for LBD. It’s an opportunity to bring a little purple to the world and with that purple some awareness of what dementia really is and what it does to the person and their family and friends.

So the next time you see a pink ribbon or the color purple stop a minute to remember the real people living with these diseases lest we forget that there are people behind them and they are dealing with these illnesses every single day.



How can you help?

• Share this post with your friends.

• Visit the LBDA web site

• Come back Wednesday for another LBD post.

• Become an awareness member on Facebook. LBDA Awareness Page on Facebook (make sure you log into Facebook before clicking the link...it will then take you to the awareness page.)

A Specialty Center for Diagnostic and Treatment of Lewy Body Dementia

Yesterday the Lewy Body Dementia Association posted a link to an article on their Facebook page. NYU has opened a specialty center to diagnose and treat Lewy Body Dementia. This is something that is much needed!

You can read all about it in the Newswise article.

Score another victory in the battle against Lewy!

Don't Forget - Tomorrow is World Alzheimer's Day!

Tomorrow, Tuesday, September 21, is World Alzheimer’s Day. Tomorrow we remember those among us who suffer from Alzheimer’s, Lewy Body and other related dementias. According to the Alzheimer’s Association web site  35 million people are living with the effects of some form of dementia worldwide. This number is expected to continue to grow. Chances are that you have someone in your family or social circle that has dementia. If you don’t today, you may someday.


Dementia is often misunderstood. A friend asked me this weekend while on the Alzheimer’s Memory Walk, “I don’t understand how losing your memory can kill you.” Well, dementia is not just about losing your memory. When you have dementia your brain cells die; they cease to function they way they are supposed to and that creates not only memory problems, but other physical problems. Education and awareness is a key goal for the Alzheimer’s Association and the Lewy Body Dementia Association. 

Education and awareness is what World Alzheimer’s Day is all about. It is a day for educating ourselves about dementia. It is also a day for speaking out about the need for more funding and more research.

Won’t you take a moment to visit the Alzheimer’s site and sign the petition to ask Congress to take this matter seriously? It takes just a few minutes to fill out the petition that can make a world of difference.

A Week to Remember

The Lewy Body Dementia Association has just announced its first ever Week to Remember October 10 -16. This is a great thing. I say that with tongue in cheek because I am aware that the reason it's a great thing is because Lewy affects so many people. Still, my sadness at the fact that we have to fight this doesn't stop my desire to fight.

The email I received from Angela Herron, President of the LBDA Board of Directors included the following ideas for raising awareness in your area. I will be considering things to do in my area between now and October and will keep you informed of my plans.

• Become an Awareness Member on LBDA's Facebook page.

• Plan a special event like a 5K run/walk or a tennis tournament.

• Download publications about LBD and share them with others.

• Create an online giving page in honor or in memory of a loved one.

• Share your experiences and connect with other LBD caregivers on our online Forums.

I am Angry!

I am angry!


Anger is one of those emotions that people are encouraged to deal with but not hold on to and definitely not show. I’m sure you have heard the saying “don’t go to bed angry.” Get over your anger, tamp it down, go to counseling, anger management. The reality, though, is that there is such a thing as righteous anger. Anger that is spurred by the injustices in our world and goads us into action can be considered righteous anger.

I am angry!

It is true. It doesn’t eat away at me. It doesn’t cause me to lash out at my family, friends, or coworkers. But the wrath bubbles up and it inspires me. It drives me to fight a battle I never wanted to fight but I am right in the middle. I can’t back away at this point. I have been called into this battle and I will continue on until the source of my wrath no longer exists.

My enemy has a name – Lewy. He is a thief. His work causes devastation, loss of hope, frustration. Lewy destroys everything he touches. Lewy isn’t a person. He’s a disease that afflicts over 800,000 people in the United States. Read more about Lewy here.

Lewy took my mom in the prime of her life. That was when the fight was on.

Sadly, there are many people in my life right now who have been touched by Lewy. Some are at the end of their loved ones journey and some are just getting started. My heart breaks every time I read or talk to someone who is just starting down this road. I can’t bear the thought of what Lewy does to these people we love.

I am angry!

But, my angry stirs me to fight. It causes me to go on no matter how hard the battle becomes. I continue because people need to know they are not alone. I continue because someday we will conquer the enemy. I dream of the day Lewy is nothing but a bad memory that can no longer hurt anyone. Until then I funnel my anger into the battle.

8 Common Types of Dementia

Recently someone told me something as if it was new information; they apologized for not telling me sooner. This person is busy and had mentioned it to me in passing. When I gently reminded them of that they said, "You know I have dementia."


The thing is this person doesn't have dementia. They are a normal, over busy 40 something and just didn't recall telling me. It happens. I know because it happens to me. Once a friend told me, "I love that story every time you tell it."

People tend to over simplify dementia and classify it as memory loss. In reality it is much more than that. And, there are different types of dementia that present differently. Some dementia causes short term memory loss while other forms cause people to forget how to do every day things. The type and cause of dementia makes a difference in the symptoms.

Today I was sent an email that had a link to a short article on 8 different types of dementia and their differing symptoms. You can read the article here

I See People

Hallucinations are one of the hallmark symptoms of Lewy Body Dementia (LBD) and dealing with them can be one of the most frustrating parts of the disease. The hard thing about hallucinations is that LBD patients can’t be given any of the drugs that are typically used to treat the hallucinations. Most of them fall into a category of drugs call neuroleptics that can cause problems with cognition, coma, or even death. So, that leaves patients and care givers with no real recourse.

Without medications to keep the visions (the hallucinations are mainly visual, but some people do experience audible hallucinations) at bay caregivers are often left not knowing what to do for their loved ones. Much of the current literature purports the hallucinations are usually not frightening for the patient, but my experience has been that this is not always the case. Mom had extenuating circumstances in her life before Lewy came that caused the hallucinations to be more frightening for her at times. But, I have talked with caregivers whose loved ones also have fears over them.

So, if you can’t give medication to help, what can you do?

When visions encroach on life, distraction is one of the best ways to react. If you can get your loved one to think about something else even for a few minutes that is often enough for the hold to be broken and the hallucination to stop.

Some things we found useful for distraction:

• Photo albums with family, friends, vacations and other cherished memories. Point to a person or item in the picture and start the memory, “Remember when I was ten and we went to the carnival and I rode the merry go round?”

• Funny stories or information about the family, “Hey, did I tell you that I talked to Aunt Suzy today and she told me that her dog did the funnies thing.”

• Singing….yes, even if you aren’t a great singer. I can’t carry a tune in a bucket, but during hallucinations I would sometimes start singing, “Oh, I wish I was an Oscar Meyer wiener.” Just the craziness of it would be enough to break the hold.

• Well loved items that carried significance for your loved ones. These are great to start a conversation with the loved one.

The experts say you should validate what the person is experiencing, but not play along with the hallucination. Playing along can be tricky since you don’t know the details of what they are seeing and making a misstep can make the person angry. However, we found that sometimes there just wasn’t anything else we could do. Dad was known at times to stomp down the stairs, open the front door, and shout, “Get out of our house, we don’t want you here.” Then he would slam the door. It was always used as a last resort.

The key is to get them thinking about something other than what they are seeing.



Caregivers, do you have other suggestions that you have found to work for you?

Let's Put Our Brains Together and Support Brain Research

Barbara Hutchinson's husband, Bill had Parkinson's Disease with Lewy Bodies. During the last years of his life she decided to quit her job and take him out of the assisted living facility to care for him herself. They set out across the country in an RV to spread the word about Lewy Body Dementia.

She created the film Living With Lewy for the 2010 Neurofilm Festival. She tells viewers that the film was created while they lived their life. This film shows some of the progression of Lewy in her husband. It also gives a clear picture of some of the obstacles caregivers face day to day such as helping their loved ones move from wheelchair to chair, bed, etc.

Barbara is working to encourage people to get involved in the fight against brain disorders. In the film she says, "Let's put our brains together and support brain research." I second that!

Thank you, Barbara for sharing yours and Bill's journey.


Voting for the Neurofilm Festival closes on March 17, 2010. You can help us bring attention to this horrendous disease by viewing and ranking this film and the film What I See.