A Grand Opportunity for Alzheimer's Disease

By , SparkPeople Blogger
Ronald Reagan, Charlton Heston, Rita Hayworth, and Mary Ellen Westerman are all people that had one thing in common. The first three names are people that were important to the world in one way or another but the last was someone that was important to me. Mary Ellen Westerman was my grandmother and although she was physically healthy when she turned eighty, like millions of other people she battled a degenerative disease of the brain.

This degenerative brain disease is known as Alzheimer's and it causes a gradual loss of memory, judgment, and ultimately the total ability to function. As was the case with my grandmother, dementia typically appears in older people as subtle forgetfulness that worsens and limits their ability to function normally in many aspects of daily life. Familiar settings become confusing, memories focus on places and experiences from many years before, and routine tasks turn into a challenge. The decline of my grandmother stood in stark contrast to my then newborn son. As he was learning to walk, talk, and feed himself, she was losing her ability to do the same. Eventually like most others, she required total care during her advanced stages of the disease before losing the battle due to general body wasting. It is estimated that about 5.3 million people in the United States have Alzheimer's disease. Unfortunately for my family, not only does the risk of contracting the disease go up as we get older, it is also higher if a family member has had the disease. Since my husband also lost his grandmother to the same disease, I suppose the race is on to see which of us forgets the other first.

I previously told you about a participation opportunity for the VITAL study, a research study designed to see if taking omega 3 fatty acids or vitamin D supplements could reduce the development of cancer, heart disease and strokes in healthy people. Now there is another opportunity I wanted to bring to your attention.

In October of 2004, the Alzheimer's Disease Neuroimaging Initiative (ADNI) started as a public-private partnership study to collect and evaluate specific disease indicators like genetic profiles and blood biomarkers. As the collection got underway, the original goal quickly shifted to using biomarkers for disease identification at the early pre-dementia stage. Now the National Institute on Aging in cooperation with the National Institutes of Health is seeking to build on the initial information of the ADNI.

Researchers are looking for older people with early complaints of memory problems to volunteer for a clinical study to examine subtle brain changes. The Alzheimer's Disease Neuroimaging Initiative Grand Opportunity (ADNI-GO) is a two-year study that is looking for 200 volunteers between the ages of 55 and 90 that may be experiencing mild cognitive changes that could progress to Alzheimer's disease. This expanding study will not only continue to follow the previous 500 people from the original ADNI study but will enroll new volunteer participants through 51 sites across the United States as well as five study sites in Canada.

Dr. Maya Angelou is an eminent poet, author, educator, historian, and professor at Wake Forest University. She is working with researchers to move toward finding a cure for Alzheimer's with this public service announcement to encourage people to volunteer for the ADNI GO brain imaging study. If you, a friend, or a family member experiences early signs of memory loss, consider participating in this groundbreaking study. You can either call one of the study center contact numbers or the Alzheimer's Disease Education and Referral Center at 1-800-438-4380 for more study information. I hope this study will reveal helpful information in the future that may relieve my children of the heartbreak of watching one of their parents forget those they love.

Has someone you love been touched by Alzheimer's disease? What was the hardest part of the disease process for you?

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Both of my parents suffered from dementia in their later years; because of the genetic link I am plagued by worry about contracting it myself. It was heart-wrenching to see two intelligent, caring human beings live out their retirement years as unhappy shells of their former selves. Report
My father had early onset at 72 becuase of long term alchol abuse. It was sad becuase he had stopped drinking and finally was getting his life together it was one of the hardest things I have ever done to essentially take over his life so he would be safe. It was the moment when I found out how really strong I could be when needed and when I decided not to wait one more minute to do the things I wanted to do in life because I now know how short life can be. I am sixty but have begun putting in place what I want done and where I want to be when this disease takes me to the land of dreams. Report
My mother is 84 with dementia. She has been living with me since Sept. Patience, patience, patience, that's what I'm learing a lot of . Bless all of you caregivers. What a challenging job!! Report
My Grandma Brozeau suffered from Alzheimer's disease along with battling lung cancer. The hardest part for me was not being able to help my mom care for my grandmother when both disease got so severe she ended up in hospice. I called each and every day to speak with both of them to do what I could to lend support. I had just had my son who needed physical therapy a couple times a week so me going was not an option. When my grandma had a lucid moment she told me specifically to take care of my son first. She was one of my closest friends and I miss her still. Report
I lost my meme to this terrible disease. The saddest thing was seeing her forget my pepe...it broke his heart..it was sad for her to forget all of us, but for him..he lost the love of his life. :( Report
I used the links to see what areas were studying Alzheimer's. My first thought was 51 centers--wow every state will be covered. Guess what? WV isn't listed. It's too late for my mother to participate, she is beyond the early stages. Just wish they were looking at more centers especially since WV has an older population. Report
Like so many of my friends, I have a mother who suffers from dementia. When it comes my time to deal with it, as will happen if I live long enough, I want the right to exit gracefully, while I can still say goodbye to my children. As others have said, it's a long, slow death, and I feel I've lost my mother already. Report
For my dear grandmother. I was a naive pre-teen when it hit her. I remember the confusion in both of us when I accused her of cheating at cards. At that age, I couldn't understand how she could forget the rules to a game she'd be playing with me for years. Report
My aunt was diagnosed at age 54, and we [physically] lost her at 63. Everything about the disease was hard, including the loss of her memories and eventually a lot of her basic functions. But, one of the hardest things for me was to watch my grandmother bury her oldest child, and to watch my best friend (in her early 20's) bury her mother. Report
My first mother-in-law had alzheimers very young. She was diagnosed at about 52. She was such a nice woman, and a smart one as well. it was very sad for her and us, as a family. My present mother-in-law was just diagnosed, and with her the worst part of it so far, is that she cannot remember a lot. she is still living on her own, in a senior's apt. building. for the time being, she does well. She does have trouble with time, when events happened...things that happened 13 years ago, she thinks happened this year. It is things like that. She still knows us all, and doesn't get lost, has friends. She's been sort of funny for awhile, so it seems to be progressing very slowly. Thank God, for that. She is on medication to slow it down. Report
Dad was diagnosed 11 years ago. He is 87 and healthy, but his memory, communication skills, and reasoning are nearly totally gone. The slowly changing stages have been difficult for all of us. But somewhere deep inside, Dad is still the loving, kind, gentleman he has always been. And his beautiful blue eyes still SPARKLE! Report
the only good thing that came from my mother dying of cancer is that if she didn't, she would have been taken by this horrible disease in a much longer, painful way.
i'll spread the word about the study! thanks for blogging it. Report
Alzheimer's disease creates multiple victims, the patient and the caregiver(s). My Mom cared for my father as long as she could, and felt very guilty when she put him in a nursing home. Now she also have Alzheimer's disease, but won't admit it. She says that 'God wouldn't be that cruel to her.'
I will be 60 this year, and am consciously doing everything that I can to create new pathways in my brain, for when the old ones 'fry', since I am sure that I will eventually get Alzheimer's as well. I find that learning the new choreography in Zumba classes is good stimulation for the brain - I'm having fun, and hoping that it's helping my future in more ways than one.
My condolences and heartfelt wishes go out to everyone dealing with a loved one with Alzheimer's and other forms of dementia. Be strong!! And please don't forget to take care of yourself, because you cannot be of help to others if you are not well yourself. Report
Currently dealing with my mother's dementia. She is 88 yrs old. Although we've seen it slowly progressing coming the past 2 yrs, she was just diagnosed this January with late onset dementia. The hardest thing for me is the angry, argumentive, negativeness in her. She is now in assisted living and we know she is being taken good care of but in her eyes we are the bad guys. According to the dr., we always will be. Its tough. Like someone mentioned earlier, I feel that I've already lost the mother I once knew. I have to remember its a disease and not take things personally and love her unconditionally, no matter what she says. God bless everyone dealing with this disease with their loved ones and also those suffering from alzheimers. Report
I think one of the toughest parts of this disease is how you lose your loved ones twice. My grandmother died of complications from this 2 years ago, but it was almost like we lost her 8 years ago when this really started to hit. Report
My father passed away 7 yrs ago, after watching his decline for several years, to know and love a brilliant man and then to witness his life ebb away piece by piece it is heart breaking. My heart pours out to those people that are left behind, because we are the victims as well. Report
Although no one in my immediate family has been diagnosed with Alzheimer's Disease, there have been many people at the church I attend who have been diagnosed with it and some have since passed away. My mother has mild dementia and lives alone since her husband dies last December 31, 2009. I can tell she is geting more and more confused about things. I don't want to put her in a nursing home and the plan right now is to move her down to L. A. with her other siblings in a retirement development that has everything inside except for a grocery store. I know she will be happier being surrounded by her brother and sisters and she will be so much safer there. Right now she is always thinking people are talking about her in some bad way. Really getting hard to communicate to her although she never was an easy person to communicate to in the first place... Report
Dad was diagnosed last year. It is hard to watch he is going downhill quickly. He is 73. We moved Mom and Dad from Mt to WA to be near my brother and I so we can help. ALZ stinks. In another year he will probably be in a nursing home. Report
MARGARITTM, you could be me! My dad died early, too, at 63, from a prolonged physical illness. Dealing with that is nothing like the stages of grief and acceptance I've had to go through watching my mom slip through this disease. She has early onset, is in assisted living and is only 66. The ironic thing is that physically, she's quite healthy! She's just child-like in so many of her actions now.

My husband and I of course worry that since she got it early, either I or my brother could get early onset as well. But one thing about ALZ, you learn to live in the moment, because two minutes from now it can be an entirely different world. Report
Seeing a loved one, my Mom, go through Alzheimers caused me to cherish the pre disease memories so much more than if I hadn't seen the change. Report
I was 10 when I lost my Nana to Alzheimer's disease. I remember going to see her every sunday in the nursing home and one week she would recognize me and the following week would stare at me as though i was some stranger. I agree it being hardest on my mom and her brother's and sisters to start losing their Mum. My biggest worry is that there is a higher chance of it happening to my Mom and potentially myself as time contiues on. I hope that one day there will be a cure and that my Mom will have the chance to remember her Grandchildren. Report
I lost my grandmother to Alzheimer's. Although watching her struggle with life in a nursing home, and watching her lose her capabilities was painful, I found the effect on my mother and grandfather to be more difficult to watch. My grandfather refused to accept that this was her fate and would get angry with her for not making a better effort to improve her mind. My mother was dealing with past painful memories that kept surfacing in my grandmother's mind...and with being heartbroken that her mother was unable to remember her as her daughter. I now watch my mother living in fear that the disease will strike her soon. Thank you for sharing these opportunities. Report
Lost my mother to Alzeheimer's two years ago. The hardest day for me was when she had no recollection of ever being married and having children. I was devastated that evening. After talking with my aunt and uncle I knew it was the disease that was the cause of her memory lapses. I found that I had to bury my mother twice. Once when I lost her to the disease then again when her body quit and she died. Miss both her and my aunt who died to Alzeheimer's also. Report
Thank you all for sharing and your insights - so hard - my Dad died rather suddenly when he was 65 and as hard as that was, watching my Mom slip away slowly is far more painful. Report
My hubby's father had Alzheimer's and the hardest part is watching your loved one 'disappear' before your very eyes...the body is present but the mind is not. So sad. I was lucky...neither one of my parents had Alzheimer's...they had other stuff going on but had their memories to the end. Report
Lost my mother to alzheimer's 2 yrs ago miss her everyday but I was missing her while she was alive because it takes them away before their body's dies. Would not wish it on my worst enmey. Report
My mother-in-law lives with us. She is very active for a 95-year old! Her mind is a mess. She cannot remember something for 60 seconds! Some of her long term memory is still okay, but even that is beginning to jumble. It is so sad to see the obvious progression of the disease. I just keep praying for more and more patience. It may be me one day... Report
This disease affects us all through selves, friends, family. Maybe with the baby boomers interest some research can be done. Report
My father took Aricept for several years before we really knew what he meant by taking 'memory pills.' He and my mother walked 1-3 miles every morning, watched their diets and he even worked out at a local hospital's wellness center 3 times a week. He lost touch with reality when our mother had hip replacement 4 years ago--he just couldn't function without her being at home for a while. My sisters and I were there to help care for him and even paid for 24 hour care, but he became violent with the healthcare workers and insisted that our mother get up to fix him breakfast at 2am, etc. He's been in an Alzheimer care facility for 3 years now and doesn't know us. He lost mobility last year and doesn't recognize his daughters. Our mother is in the assisted living area of the same facility and visits him twice a day but he's mostly unresponsive. It's so sad since he tried to take good care of himself--to no avail. It's a horrible disease. Report
My mother, and my husband's father, both passed away from complications of Alzheimer's (and the families deciding against heroic measures - which was one of the most difficult decisions I've ever had to make). My mother hadn't spoken in a year when we decided to not fight the next major infection. It's a terrible disease, because you lose the person twice - first their mind, then their body. Report
My grandmother had this disease and while she passed away 5 years ago from other causes, it was so hard to see her go downhill and not remember us. it was like we didn't even know her. My grandfather had strokes and couldn't remember us either. I didn't visit either of them in the nursing home because it was so hard to see them like that. Report
good morning - it is very heartbreaking to see a loved one decline. i have had my aunt, a cousin of my husband and a dear friend have the latter years of their life stolen by this disease. in the case of my aunt, my mom's sister, we always had many pictures around. she would struggle to blurt out my name - syllable at a time - and we would all cheer when ever she was able to remember. in the end, she fell, broke her hip and ultimately died of pneumonia - she was 84. we noticed in her early 60's that she often had problems remember common words, and dis orientation in her own home of 29 years. my husband's cousin had been rescued many times from getting lost while driving to common destinations - supermarket, relatives homes and so on. he was in his seventies when he succumbed - but his wife and children suffered the fact that for the last four years of his life, he did not show signs of knowing who they were. my friend who i had known from childhood was in her late sixties. we had lost touch and when i visited europe where she had moved with her husband, i wanted to see her. i went to her home, they told me she was in a hospital but did not mention she was ill with alzheimer's. when i saw her - it was not even a ghost of her former self, i touched her hand. she died three months after that.
this disease is relentless at robbing the soul and is so devastating to the families. BB Report
Recognizing the symptoms early is a tough problem to face. Report
Remarkably, I've not been touched by this disease in family or friends, but I am prepared as I know it is everywhere. Thank you for this great information. Report
My mamaw has this disease and has since suffered a stroke and a heart attack, but still she is hanging on. The hardest part?....is there an easy part? I miss being able to carry on normal conversations with her! Report
My Mother had Alzheimer's disease. The hardest part for me was watching her waste away and seeing that blank look on her face. Report
My father had Alzheimers Disease and he passed away 3 years ago aftre being in a nursing home for a year.
He feared more than anything having this disease that his mother died with. After he broke his hip in the nursing home he went downhill very quickly which was a blessing to him and to us not having to see him suffer with the dreadful disease for several years.

I now fear it happening to me since it is so prevalent in our family. I do everything to keep my mind sharp and my body healthy hoping it will not affect me. When I am forgetful, I wonder if it is the disease trying to attack me or just too many things on my mind at once. Report
My grandmother died of alzheimers about 7 yrs ago. It was hard to watch her lose her memory and slowly decline. My best memory though, is going to visit her at the nursing home and playing my violin, especially the older songs from when she was young. It would get her attention and the rest of the residents seemed to enjoy it too :) Report
I have worked in eldercare for much of my adult life and have witnessed what this terrible illness does to families. As a society, we are sometimes too complacent about things such as "dementia" and consider it part of growing older. The baby boomers, such as myself, are "coming of age" and we will see more and more of this dreaded disease. The emotional, as well as financial, toll can be astronomical. Report
My stepmother suffered from alzheimers and I watched my father care for her lovingly until she had to go into the nursing home and then he spent the better part of every day with her-he was well into his 90's but never missed a day there. He only stopped going when he first fell and broke his arm and a few months later broke his hip. I don't believe she even knew he wasn't coming daily but it sure did bother him. It was something to see how much he cared for her. Report
My grandma started getting lost going to places she knew like the back of her hand. And then she finally started calling my daugter by my nickname. I still miss grandma and hated to see her go through what she went through.
I dreamed about grandma before she died and she was running around in a maze of the mind. She just couldn't break out of the maze no matter how she tried.
And yet she had moments of total clarity. Report
My Mother was diagnosed years ago. I was so very sad to come to that realization. I lost my best friend .. although she is physically there. Report
My mom has it now very sad disease Report
My maternal grandmother, my mother, & my mother-in-law all suffered from it. I took care of both DM and MIL. Now my 57 year old sister has been diagnosed with early onset Alzheimer's disease. I am praying that they find a cure very soon. I know at least 10 people that have it right now. With the aging population in this country growing, there will not be enough caregivers to take care of all the Alzheimers patients. God bless the caregivers and patients. Report
I currently work in an Alzheimer's assisted living facility and my grandfather is a resident there as well. It is truly a devastating disease and I thank you for this blog. Report
While running my program for seniors I witnessed the diminution of many fine people. I hope that this study is successful in putting the puzzle pieces together to form a solution. Report
My mom was only 69 when she was diagnosed with Alzheimer's. She is now in a nursing home since she can no longer walk, is incontinent and most of the time can't feed herself. At times, she is forgetting how to chew. I have watched my dad age from a broken heart when he realized that she could no longer stay at home. I am losing both my parents. Report
My Granny as well as my Great Aunt ( my grannies sister) had this horrible disease. As well as my husbands Mom, Dad and Uncle ( dads brother and other of his siblings).
I think the hardest part for me was you don't loose them once you loose them twice. What I mean is you loose them to the disease and then you loose them again when they die.
It was so sad to seem them look at you and be scared because they really have no idea who you are. Or why you are there with them.
My husband is starting to show some signs of forgetting. I don't know if it is Alzheimers or just the normal forgetfullness. He won't go to the doctor to find out. Report
My girl friends Susan and Tish both have the disease. Susan died in December of 2009. The last real conversation I had with Susan was in March of 2009. She was so anxious because she knew she wasn't doing a good job of conversing with me. I felt relieved when she died. Tish has not communicated for almost 2 years now. She is like a baby. She sleeps a lot. I used to visit her, sit by her bed and watch her smile while she slept. It was so sweet. Now even the smile is gone. I would much rather her call me up on the phone so we could arrange a time to take our walk. It is so sad. Her husband visits every other day to feed her. Our Tish has been gone for a long time. Both these women took very good care of themselves - ate right and exercised. They did have families that had a strong history of Alzheimers. They knew what was in their future and they faced it very bravely. Report
I got diagnosed at 54yo, and I am 56 now. I had to leave my job (it was complex and would affect patients and key projects just were a struggle.) Yuck! Report
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