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?
Collecting Ebenezers as I travel through life. "Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, “Thus far the Lord has helped us.” 1 Samuel 7:12
Showing posts with label Alzheimers. Show all posts
Showing posts with label Alzheimers. Show all posts
Monday, September 19, 2011
Monday, August 29, 2011
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.
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.
Monday, August 15, 2011
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.
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.
Friday, August 5, 2011
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
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
Wednesday, July 6, 2011
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.
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.
Wednesday, June 29, 2011
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.
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.
Wednesday, June 22, 2011
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.
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.
Monday, September 20, 2010
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.
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.
Friday, September 10, 2010
Oh my!
I did a real daffy thing yesterday. I have been thinking about what to post on my Friday blog post all week. Yesterday I went to Bible study - the first one for this year. There are some great women in my small group and I am totally looking forward to getting into God's word and to get to know new people. I have been away from church for the last couple of years during the really tough times. It was dumb, but I pulled away from a lot of things in my life as stress built up. I wrote a few weeks ago about coming back to church and coming home and I have to tell you it still feels amazing.
Anyway, I digress. After Bible study the kitty cat and I took a cat nap because last weekend in Wyoming wore me out - more to come on that next week. When I got up I worked on some things for the upcoming Memory Walk and as I did I thought about my blog post. But, when I was done I just turned off my computer and went to bed with my book. Yes, totally true story, just went to bed and didn't think of it until the wee hours of the morning.
So, sorry for not being prompt with my post. I have been trying very hard to work on the whole meeting writerly deadline thing and getting my blog posts done three days a week are something I am using to instill meeting a deadline in my brain!
I do want to tell you about the book I was reading. It is called Still Alice and is written by Lisa Genova. Alice is a Harvard professor in her 50's when she begins to forget things. Then she misses her period and thinks that maybe the whole thing is menopause. When her period returns and one day she finds herself in the middle of Harvard Square and not knowing where she is, she decides it's time to see her doctor. After a series of tests and extensive medical history Alice is diagnosed with Early Onset Alzheimer's Disease and her life changes.
This fiction story does a great job of bringing to light early onset dementia. Everyone thinks dementia is an old person's disease, but it is being seen in younger and younger people all the time.
I thought the book had a good message and did a good job of presenting Alzheimer's in a way that allows the reader to get a feel for what it is like to have dementia. Lisa tackles all of the aspects of dementia that complicate not only the patient's life, but also their family. I believe it was Nancy Reagan who once said that Alzheimer's is the long good-bye. So true that is. Little by little the person with dementia slips away and each day the loved ones have to learn to live with the changes.
While I felt this book was good at explaining the disease and portraying the symptoms, I was disappointed with the writing in the book. At times it was somewhat convoluted. Some of the conversations werehard to follow. And, I felt the book ended very abruptly without really wrapping up the story. It just kind of stopped. Despite these drawbacks I do recommend reading this book if you are interested in learning more about dementia.
Anyway, I digress. After Bible study the kitty cat and I took a cat nap because last weekend in Wyoming wore me out - more to come on that next week. When I got up I worked on some things for the upcoming Memory Walk and as I did I thought about my blog post. But, when I was done I just turned off my computer and went to bed with my book. Yes, totally true story, just went to bed and didn't think of it until the wee hours of the morning.
So, sorry for not being prompt with my post. I have been trying very hard to work on the whole meeting writerly deadline thing and getting my blog posts done three days a week are something I am using to instill meeting a deadline in my brain!
I do want to tell you about the book I was reading. It is called Still Alice and is written by Lisa Genova. Alice is a Harvard professor in her 50's when she begins to forget things. Then she misses her period and thinks that maybe the whole thing is menopause. When her period returns and one day she finds herself in the middle of Harvard Square and not knowing where she is, she decides it's time to see her doctor. After a series of tests and extensive medical history Alice is diagnosed with Early Onset Alzheimer's Disease and her life changes.
This fiction story does a great job of bringing to light early onset dementia. Everyone thinks dementia is an old person's disease, but it is being seen in younger and younger people all the time.
I thought the book had a good message and did a good job of presenting Alzheimer's in a way that allows the reader to get a feel for what it is like to have dementia. Lisa tackles all of the aspects of dementia that complicate not only the patient's life, but also their family. I believe it was Nancy Reagan who once said that Alzheimer's is the long good-bye. So true that is. Little by little the person with dementia slips away and each day the loved ones have to learn to live with the changes.
While I felt this book was good at explaining the disease and portraying the symptoms, I was disappointed with the writing in the book. At times it was somewhat convoluted. Some of the conversations werehard to follow. And, I felt the book ended very abruptly without really wrapping up the story. It just kind of stopped. Despite these drawbacks I do recommend reading this book if you are interested in learning more about dementia.
Wednesday, June 16, 2010
La Bobera - The Foolishness
The Foolishness has taken up residence high in the mountains of Colombia. There, in one village, one family is dealing with Alzheimer’s in a horrific way. This family is considered to be the largest known clan affected by Alzheimer’s. In the village, La Bobera (The Foolishness) is dreaded. Not knowing the cause has led to much fear and superstition. The New York Times featured an article on one family in the area.
The family matriarch cares for three adult children with Alzheimer’s. In a cruel life twist, when she should be enjoying her golden years, Mrs. Cuartas is a much needed care giver. At the age of 82 she is once again changing the diapers of her children, feeding them, and taking care of their needs.
The remote region and the fact that the gene has long been in the ancestry of the area means that many in the village and surrounding area deal with the dementia. Early onset of Alzheimer’s leads people in the prime of their life to begin to lose their memories and their ability to function. This disease is devastating a whole region of people.
This area has become important in the fight against Alzheimer’s. Having so many affected in one geographic region offers a suitable group to study the disease. A gene has been identified as causing the problems so there is the ability to determine if a person is predisposed to developing the disease. This offers the opportunity to work for treatments that can be used before Alzheimer’s develops as opposed to trying to treat it once symptoms have appeared.
It is truly a tragedy that this region of Colombia is dealing with this horrible disease in such a profound way. My heart goes out to them as it does to anyone having to fight dementia. While nothing can make it worthwhile to have Alzheimer’s the unique chance to work toward a treatment and cure is the one miniscule bright spot.
Read the complete Alzheimer's article on the New York Times web site.
The family matriarch cares for three adult children with Alzheimer’s. In a cruel life twist, when she should be enjoying her golden years, Mrs. Cuartas is a much needed care giver. At the age of 82 she is once again changing the diapers of her children, feeding them, and taking care of their needs.
The remote region and the fact that the gene has long been in the ancestry of the area means that many in the village and surrounding area deal with the dementia. Early onset of Alzheimer’s leads people in the prime of their life to begin to lose their memories and their ability to function. This disease is devastating a whole region of people.
This area has become important in the fight against Alzheimer’s. Having so many affected in one geographic region offers a suitable group to study the disease. A gene has been identified as causing the problems so there is the ability to determine if a person is predisposed to developing the disease. This offers the opportunity to work for treatments that can be used before Alzheimer’s develops as opposed to trying to treat it once symptoms have appeared.
It is truly a tragedy that this region of Colombia is dealing with this horrible disease in such a profound way. My heart goes out to them as it does to anyone having to fight dementia. While nothing can make it worthwhile to have Alzheimer’s the unique chance to work toward a treatment and cure is the one miniscule bright spot.
Read the complete Alzheimer's article on the New York Times web site.
Friday, March 26, 2010
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
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
Monday, November 2, 2009
Diagnosing Dementia
Diagnosing dementia can be a frustrating experience. Currently the only way to know 100% what kind of dementia a patient has is to do an autopsy at the time of death. Not knowing exactly what type a patient has can mean a process of trial and error to find the right medications to help them. Finding a way to definitively pinpoint dementias will lead to improvements in patient care and provide clues to help in finding a cure.
Recent studies by the Mayo Clinic have shown promise in using MRI technology to identify patterns of dementia in the brain. An article published at Science Daily states that 90 patients were involved in the study and that beginning results showed a 75%-80% accuracy rate. More study is needed, but the beginning results are promising.
While this technology is still new and needs more study it is another step in the right direction.
Recent studies by the Mayo Clinic have shown promise in using MRI technology to identify patterns of dementia in the brain. An article published at Science Daily states that 90 patients were involved in the study and that beginning results showed a 75%-80% accuracy rate. More study is needed, but the beginning results are promising.
While this technology is still new and needs more study it is another step in the right direction.
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) http://mednews.wustl.edu/news/page/normal/14696.html
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) http://mednews.wustl.edu/news/page/normal/14696.html
Saturday, September 26, 2009
World Alzheimer's Day
Every 70 seconds someone crosses over the starting line of Alzheimer’s Disease and begins to walk the road of dementia. This statistic comes from the Alzheimer’s Association and startled me when I heard this at my city’s 20th annual Memory Walk last weekend. The Memory Walk is the Association’s largest fund raiser each year and funds their education, support, and research.
Photo ©Thomas H. Fickas Jr
Alzheimer's Disease International has released their 2009 World Alzheimer's Report. The research indicates that in 2010 there will be an estimated 35 million people around the world with any form of dementia. Again, this doesn’t include the number of people who will deal with the effects of knowing someone with dementia. This number includes all forms of dementia. Alzheimer’s Disease is the leading cause of dementia followed by Lewy Body Dementia as the second. There are many other forms of dementia and each form of dementia has its own unique symptoms, but they all devastate a person’s memory functions.
I have not had a chance to fully review the 24 page executive summary of the report, but what I have read just reaffirms my commitment to fighting this horrible disease. The numbers show that dementia is not a small problem, but rather one that will continue to grow and touch more people unless we do something now to staunch the progression. Following are the recommendations made by the authors of the report:
1. The World Health Organization (WHO) should declare dementia a world health priority.
2. National governments should declare dementia a health priority and develop national strategies to provide services and support for people with dementia and their families.
3. Low and medium income countries should create dementia strategies based first on enhancing primary healthcare and other community services.
4. High income countries should develop national dementia action plans with designated resource allocations.
5. Develop services that reflect the progressive nature of dementia.
6. Distribute services with the core principle of maximizing coverage and ensuring equity of access, to benefit people with dementia regardless of age, gender, wealth, disability, and rural or urban residence.
7. Create collaboration between governments, people with dementia, their carers (caregivers) and their Alzheimer associations, and other relevant Non-Governmental Organizations and professional healthcare bodies.
8. More research needs to be funded and conducted into the causes of Alzheimer’s disease and other dementias, pharmacological and psychosocial treatments, the prevalence and impact of dementia, and the prevention of dementia.
Dementia is a world problem that has the potential to affect us all. Reading the above recommendations can be overwhelming. What can one person do? One person can’t solve the problem, but your contributions don’t stand alone. Each person can make a small difference and those differences can make huge changes. To find out more visit the Alzheimer's website. Together we can move this journey closer to the finish line.
Photo ©Thomas H. Fickas Jr
Saturday, April 25, 2009
Move the Cause Forward
This is the time of year that they begin popping up all over – fundraising walks. These walks have become very popular in the last few years. They are a great way to raise awareness and to raise money for worthy causes. Some people walk because a friend asks them or because they want to get out and enjoy the weather while doing something good or some people walk because of a deep seated passion.
In the past I have fallen into the first two groups, but now I fall into the last group. I still participate in other walks to support friends in their causes, but I am a woman with a passion now, a woman with a cause. Honestly, I wish I didn’t have this passion, but because of circumstances I couldn’t control I had no choice. You see in the last ten years of my mother’s life she was increasingly tortured by dementia. My family and I became all too familiar with the devastation that dementia wreaks. It is this that fuels my passion and my cause. My goal is to wreak devastation on dementia so that someday other families won’t have to go through what we went through and other people won’t have to suffer as my Mom did.
Dementia is a generic term to describe a cluster of symptoms. There are many types of dementias that have slightly different symptoms. Alzheimer’s is currently the leading cause of dementia accounting for 60% of the population of people with dementia. Lewy Body Dementia affects 20% of the population of people with dementia and Vascular dementias affect 10-20%.
This year will mark the second annual walking of the Lewy Ladybugs in the Alzheimer’s Association Memory Walk. 2009 marks the 20th year of Memory Walks in Colorado. This year’s theme is “Move the Cause Forward.” All funds raised during the Memory Walks in communities around the country go the local Alzheimer’s Associations. These groups provide support and education to their local communities.
You can find out where the Memory Walk is happening near you by visiting the Memory Walk Web Page.
Wednesday, October 1, 2008
GO PURPLE FOR DEMENTIA
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.
Today I go purple on this blog and will continue to tout purple until dementia is conquered.
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.
Today I go purple on this blog and will continue to tout purple until dementia is conquered.
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