Our Blog Team

 

Alzheimer’s Association
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. About us.

Neelum T Aggarwal M.D.
An Associate Professor in the Department of Neurological Sciences at Rush University Medical Center in Chicago and a steering committee member at Alzheimer’s Disease Cooperative Study Group, Dr. Aggarwal, is a cognitive neurologist with particular interest in all types of dementia (Alzheimer’s disease, fronto temporal dementia, vascular dementia and Lewy body dementia). In addition to her active clinical practice, she continues to conduct original research in a variety of large scale community-based studies. She is the co-investigator on multiple grants funded by the National Institute on Aging (NIA). In addition, she is a speaker to many community and business organizations that seek to gain a better understanding of the changes—cognitively and physically—in the aging process, and is an advisor for community-based and minority health initiatives.

Paul S. Aisen M.D.
Paul Aisen, NIA-appointed Director of the Alzheimer’s Disease Cooperative Study and Professor of Neurosciences at the University of California, San Diego, has been conducting therapeutic research on Alzheimer’s disease for the past two decades. Dr. Aisen’s research focuses on inflammatory mechanisms in the brain and the development of new treatment strategies for Alzheimer’s disease and other neurodegenerative diseases. As Director of the ADCS, he collaborates with pharmaceutical companies on drug development and designing and directing multicenter randomized controlled trials to evaluate the safety and efficacy of new treatments. Therapeutic approaches under investigation include secretase modulators, amyloid-binding compounds, cholinesterase inhibitors, nicotine, antioxidants and anti-inflammatory drugs.

Robert J. Egge
Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer. With specific policy and analytical experience in Alzheimer’s and other related healthcare issues, Mr. Egge leads the Association’s efforts to elevate Alzheimer’s as a critical federal and state government priority and implement policies to better serve those affected by Alzheimer’s disease and related disorders. Chief among these priorities is increasing federal funding for research and care programs, while also advancing Alzheimer’s disease policy planning and coordination at the federal and state levels.

Harry Johns
Harry Johns has served as the president and chief executive officer of the Alzheimer’s Association since 2005. Since his arrival, the Alzheimer’s Association has built new momentum for its vision of a world without Alzheimer’s, including the first nationwide campaign to increase understanding and awareness about Alzheimer’s disease, an emphasis on accelerated treatment progress through the promotion of participation in clinical studies, a campaign to enhance early detection of the disease, tools designed to support both individuals with the disease and their caregivers, and targeted research funding to advance diagnosis and treatment. Harry was appointed by the Secretary of Health and Human Services in 2011 to serve as a member of the Advisory Council on Alzheimer’s Research, Care, and Services. He also serves as CEO of the Alzheimer’s Impact Movement and on the Executive Committee of Research!America. Prior to joining the Alzheimer’s Association, he was one of the four members of the executive team of the American Cancer Society.

Michael Rafii, M.D., Ph.D.
Co-Director of the Memory Disorders Clinic at UCSD Perlman Ambulatory Care Center in La Jolla, Assistant Professor of Neurosciences at the University of California, San Diego, and Associate Medical Director of the Alzheimer’s Disease Cooperative Study, Dr. Rafii specializes in cognitive disorders, including dementias such as Alzheimer’s disease. His current research interests include neuroimaging and clinical trials. He received his M.D. and Ph.D. from Brown University and conducted neurogenetics research at Harvard Medical School. Dr. Rafii went on to complete his neurology residency at the Johns Hopkins Hospital and fellowship in Dementia and Cognitive Disorders at the University of California, San Diego.

Sherri Snelling
Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers. She also has served on the caregiving advisory councils for the Centers for Medicare and Medicaid Services (CMS) as well as the Centers for Disease Control (CDC).

  85 Responses to “Our Blog Team”

  1. I just wanted to add something here that I have not seen before. I just saw that Springbok Puzzles have jigsaw puzzles for Alzheimer's patients. I wonder if anyone else has heard about this?

  2. I am having difficulty accepting that everything that we are seeing in Dad is Alzheimer's , Dementia in the Frontal Lobe area is the problem. He was Dx 8 years ago. He can walk around, does not exercise. Sits in his chair most of the day. He has lost 80-90% of his strength and tactile ability in his fingers. He need assistance undressing to go to the restroom, to change his clothes, to wash his face, comb is hair and to shower. He does not want to take a shower or change clothes. Continenance is a big issue. He wears mens pads and now recently a pull up and a pad. He can not tie his shoes or pull up his pants. He is very OCD and is a hoarder, which makes getting the house accessible for help very difficult. I have been workin on the house for the past several years.

  3. Part 2: He can bearly sign his name, so he is not writting checks, but has to look at the check after it is written to so what is noted on the comment line and review the check. When I plan to come over to work on the house or the yard, I have to give a a detail plan of what we will be doing, the start time and how long I will be there. He is does not easily accept change that will help him and Mom that is taking full care of him. It takes him awhile to get ready to go out for appts or errands with Mom's pushing and helping. She has to give him a shower a day ahead and save him the morning of an appt.
    Any help or suggestions/comment or ideas.

  4. I just wanted to share the story about my grandfather, who had Alzheimer’s, who died four years ago today and didn't know where else I should post it.
    http://thelifeofjwo.wordpress.com/2012/04/04/reme

  5. I see celebs. out telling their stories, but where is the media coverage. You all speek well for the caregiver, but what about me and the others in my world, who really speaks for us, in fact who really wants to hear from us. Since a recent study released showedd that 60% of Americans think this damn disease is cureable, I guess the word is not getting out.
    http://livingi-with-alzhiemers.blogspot.com/
    God Bless,
    joe

  6. My sister has Alzhiemers, my brother had it as well! My brother died six years ago at 62 years old. My sister is 65. It is really hard, I don't know what I would do without support. I find the best thing for me is to ask for what I need from family and take each day as it comes. We are planning a big birthday party for my sister in July at her request!

  7. Yesterday I learned my husband has AD. My husband won't be told for another 5 days when he gets the results of his assessment. So many emotions, so much fear, so much uncertainity about what to do and how best to help him when he hears the news. I am glad I have these few days to get used to the idea so when he is told I can be there for him. Bless the counselor from the Alzheimer Association; she moved me from a place of frozen desperation to a place where I can take tiny steps in thinking about a new future and a different us. I have so many questions my head hurts but that pain is so small compared to the pain in my heart for my husband. I feel so inadequate and without confidence yet there is no choice I have to move forward and accept.

  8. June 20, 2012 "The Longest Day" supporting Alzheimer's Research…..
    Many thanks from Anita's Team (Mission Oaks ) to family & friends for your love & continued support…..We raised over $1,000.00……
    "Someday There Will Be A Cure"……"The love of my life" for the last 56 yrs MOE participated with all of us & enjoyed every minute of the day….Surrounded by soooo many friends……HE even was the BEST PUTTER of the day…….He has not forgotten that!
    Thank You again
    Anita

  9. Please share this video and #OneThing that you never want to forget to help end Alzheimer's.

  10. My dad was diagnosed with Alzheimer’s and thankfully he has a full team of support! Along with my mom, I have 7 siblings and everyone has pulled together to help take care of him. He still has some very lucid moments so Alzheimer’s has not gotten the best of him yet. I have a new mission now and that is to be a part of finding a cure for Alzheimer’s, whatever commitment that takes on my part and it is wonderful to see this huge community & support forum!!
    Thank You!!

  11. My Dad has late stage Alzheimers and, to help me and my family cope, I have started a blog at http://ihatealzheimers.blogspot.com/. It’s brand new, but already it has helped me remember my Dad in a way that I want to remember him, before he had the disease. I hope other people will read it and find comfort as well. Let me know what you think.

  12. I'd like to share this. I have been blogging about my mom's alz for over 2 years with an emphasis on her grandchildren. For anyone that is interested in how to share the love with small children. Please read. http://www.lois-peggy.blogspot.com
    Thank you.

  13. I find nothing on UTI- urinary tract infections and this a vital subject to be aware of and observant to?

  14. Anyone have any experience with a parent with Alzheimer and the primary care giver is a hoarder?

  15. I have discovered this blog and I am excited. I never thought about music therapy. My Mother is 85 and has dimentia. She just sits and stares. I try to get her to play games or even walk. It has been an up hill battle. I would like to be part of this blog and find out more and maybe I could provide insite to what I am experiencing..

  16. I finished the article "Care-giving Conversation . . . Your Heart and Your Head". It is mysterious how we are prompted to read something and soon realize its value, or not. Caregiver Achilles heel, that's me. No one can take care of my wife like me.
    I may ask for help from my daughter or my wife's sister. They both offer help. However, they are busy with their lives. Don't ask and don't accept. I think of our marriage vows – "in sickness and in health" – God is always there. My wife is 74, I' ll be 74 in a few days. My wife is very funny and dis-inhibited. I tell myself that my care-giving is accomplished thru faith, hope, love, laughter and patience.

  17. My sister and I started a blog in memory of our parents who both had Alz and passed away within the past yr. Please visit http://www.anniesalzangels.wordpress.com my sister has started a small volunteer group in Columbus, Ohio called Annies Angels who visit folks with alz.

  18. I have had a scan of my brain that confirmed I have Alzheimer's disease. I am age 74 and am experiencing the earlier symptoms of the disease . More specifically, my problem is limited right now to losing or forgetting names of things. "Things" includes people, streets, medicines, doctor's etc.: I have joined the Alzheimer's organization in Houston, Tx , and in our meetings I have never found anyone with the specific symptoms that I have. Therefore, I would like to find one or many pers with such symptoms so that we can discuss, complain, laugh, advise, ad and generally get a a feeling t hat I'm not alone. For example, I have devised a way to use my I-Phone to hold my key words and easily use this when I need to converse. I could share that feature with others. Thanks much.

  19. My name is Phyllis I take care of my Marie. She has beginning stages of demengia . A few months ago she had surgery on her left knee. A knee replacement. I have taken care of many patients with the same sickness,but she thinks I don't know what I am doing. This is very stressful. I also live with her. Last year I took care of my father before he passed away. So she is very short when I try to help her. I have tried to do all the tools when I need it. Could someone help me with this. We have family here but no one wants to help me with this I am on my own. Last year I also went to college and graduated but, I cant work until I can trust her by her self. Thank you

  20. I'm currently a caregiver to a wonderful person. I recently cared for my mother who had dementia. She is know longer with me but I like to encourage others on this difficult journey.

    I would love to start a southern chapter for families, caregivers, and patients who in need of a support group. This disease affects everyone. Please email me if you are interested in a support group in Clinton, Waldorf, White Plains, and La Plata, Maryland. Would love to hear from you.

    Thank you for your support.

  21. I am the organizer of Lady-Links, a group of ladies who makes friendship care visits to a woman in our community who has Alzheimer's dementia. We meet with her twice a week, giving her husband a much needed break, and do activities with her that she enjoys and can successfully complete. We have a blog that describes our activities and I hope you will take a look at it to see what we do. It is our hope that others will duplicate our efforts with their friend or loved one.

  22. I just found this site. My maternal grandmother died with alzheimers. Two aunts died with alzheimers. Two appeared to have alzheimers but died before diagnosed. My uncle has alzheimers now. My mom, the youngest of eight, has alzheimers now. I realize now that symptoms were occurring about seven years ago but if your loved one has quirky behavior, it gets dismissed as just them being them. In the last year she has deteriorated to not being able to dress herself and not that she can't put clothes on; but, my mom was a clothes and shoe lover. Now she can't understand why she wears two blouses or has different shoes on her feet. She loses things on the way to one room from another within minutes. By the way, she was an impeccable dresser who had to match every piece. I keep waiting for her to try and it does not happen. My point here is to let anyone who does not know that the signs are there. A seeming irrational act that we shrug off may be a sign. My mom was determined to have her house waterproofed. She always asked her brother or my brother for their opinion. Not a big deal but it was not a necessary task. A lot of little individually unimportant things that now appear to be major signs of something.

  23. Bill Bailey, from Virginia, was a member of the National Early Onset Advisory Group. He was diagnosed in 2006. He's 64, and his condition has since declined. He is now being cared for in a nursing home close by. A story about his adventures and life living with Alzheimer's is also featured in the newest version of the book "Chicken Soup for the Soul" featuring stores about Dementia and Alzheimer's. I am his caregiver and legal guardian as well as his wife. I read with interest another exerpt from the book featured on the website, and wanted to encourage others to read this heartwarming and "from the heart" book full of tales of real individuals coping and learning while they live with Alzheimer's.

  24. I invite all to follow my blog: "A Place For Dad"…I am currently a caregiver for my father (age 84) who also has severe Glucoma/Low Vision and it is hard. I work a full time job and run a small non profit. How can I get assistance with his near "blindness"? My dad cannot see anything.

  25. I recentlly sometimes forget about names of several people I know and only remember them later ( at about a few hours or a few days later). It has never been happened before . I'm only 24 and yeap, I have quite much stress on my life.I'm afraid I got Alzheimer! Can s.o know abt it can help me figure out my status?

  26. My husband is adamant about getting a large dog,because he is afraid. Thro the blog I've found out service dogs are to expensive.we have a beagles. I'm afraid he will try to hurt our dog,so he an have another dog. I'm not able to take care of my husband and a new dog. Any ideas,I feel so guilty,denying him a dog. I'm exhausted.

  27. My wife was formally diagnosed with Alz at Barnes Clinic, St Louis, in 2008 at the age of 58. We know in looking back that she was showing signs as early as 2004. She is fairly well advanced but still eats and sleeps well. Recently she has experience a number of seizures which have produced interesting results. A few days after the first, her caregiver and I both noticed a positive change in her awareness and ability to understand and respond to questions. This lasted for a few days. About a week ago she experienced two seizures in a period of about 2 hrs. We were ready to take her to the H if she had another but did not, Several days later a similar but more dramatic change took place. She was laughing at funny statements, jabbering constantly, answering questions lucidly, remembering things in her past, etc. Is there a possibility that a positive effect of seizures could be opening new pathways in the brain? Have any studies been made on this theory? John Robertson, jarober44@gmail.com

  28. Thought maybe I should share a bit about how this disease has effected my family in ways no one had seen coming. About five years ago, my grandmother was told she had to retire. Since working from the age of twelve when the Great Depression occurred, this was a shock to her. She started to decline with hygiene as the first signs. But as family we felt she was just very forgetful and didn't pay any attention, thinking she was taken care of herself. Keeping in mind that my mother and myself live across the country from her. We live in Utah and she is in Maine.
    As time went on, my mother and I noticed each time we spoke to her on the phone something was different. One day she fell and broke her hip. My grandmother crawled to the phone to call 911. This was four years ago and she a month in rehab. My uncle from Florida was the closet one to get there and see what the situation was. I do actually have one uncle and my sister that live in Maine as well as grandmother. My sister was doing the best she could with working and helping out grandma. My uncle is just another vent post to come soon. They all made the decision, which my mother and I disagreed about was to move her to Florida. We thought it would be in her best interest to move here since I have done care providing for twenty years now. But, nope, she was moved. Not even a year later, things were not going so well. She had one shower in a year?? What were they thinking ?? First thought….some thing is wrong with this picture. My mother and I would call every week for a year to see how she was doing. Nothing was changing…so we set up for a one way ticket with no stops to move her with us…no questions asked. My uncle put her on the plane and I met her at the gate. For the past three years, I have been doing the care providing. Showers all the time, food set up for her each day and a routine of care provided. The very next day after she arrived we took her for a hair cut, which was much needed. Set up a doctors appt for her to get hip check up and found out the start of Alzheimer disease and dementia had set in.This was the toughest news for my mom to handle and still is each day. to see your own mother this way. Just recently in October 2013, she took a turn for the worst. We set up a day program each day and respite for one weekend per month at an assisted living place. (yes…assisted living) While there she fell and attempted to crawl to the restroom. They called and told us they were not sure how long she was on the floor from 2 pm to 6 pm. Okay…if I am not crazy …something is wrong with this twenty four hour watch thing. She was checked and they stated she seemed fine. Her blood pressure had rose and high temperature. But went down soon after. We think she was scared, anxiety and disoriented. So, we thought if she fell again than it was better for her there than at home. She stayed another night. Well, as you might guess…she fell again. This time I picked her up and brought her home. Since that day we brought her home, she has not walked or stood on her own. Hospice was finally started in February of this year. I still have problems with the aids they send or routine schedule. This is a must for her set schedule. The nights are tough because of sun downers. Each night is rough for everyone, especially my grandmother as she attempts to climb out of her hospital bed. Three thirty the other morning was the worst. She had both legs out of the bed under the railing and I had to push the bed down so that my mother could remove her legs without breaking them. Well, that is some of my story, as of current. It just depends on the day. Thank you for the add and I look forward to share more with everyone. As I have read many post…I thinking I may have found a great support group that we need to help in this journey we are taking. Thank you for letting me share.

  29. Several weeks ago my sister began to 'forget' things and get confused. When I spoke to her about it she told me that she was just tired (she does have several physical health problems), and so I believed her but was still concerned. Since then she has been admitted to hospital (where she stayed for 12 days and has since been sent to a Residential Home). I spoke to her several times tonight and am alarmed at the rate of deterioration in her. She rang me to tell me that they were sending her home and she was scared as she didn't want to go – it was 10.50 pm!).

    I spoke to a member of staff, gave her my number and then spoke to my sister to reassure her that no-one would send her home. I am going to the home for Sunday lunch and will talk to staff then but I know, in my heart, that I am losing my sis and all I want to do is be informed so that I can help her.

    Please advise as I love my sis dearly and will do anything to help her.

    Thank you.

    Dawn.

  30. Dear Alzheimer's,

    I hate you. With all by being I hate you. Everyone you touch withers and dies. And the rot spreads to everyone around it.

    And worse, you have no mercy. You have no compassion. You make bad days worse and the worst days unbearable. You grab hold and won't let go. You drag us through the mud and spit in our faces.

    I hate you with a passion unlike any other. You've robbed me of my Mother and have taken away my Father and replaced him with a 4 year old child. Your wake of destruction is long and wide and I hate it. It ripples beyond my understanding. The simple things are hard. The pleasurable things are forgotten.

    Alzheimer's, you ruin lives, mine included. You're stealthy, determined and patient and for those things I have you more.

    Worse, the only face you show are the people we love. How can we show our hatred to that face? You put on their skin and parade around like someone we're supposed to love. You're deceitful and cruel.

    Society doesn't see you do they? They see the faces of their Mothers and Fathers, Aunts and Uncles. What's so bad about those faces? We love those faces, we love those people. But you're in there, aren't you? Hiding behind their eyes, worming your fingers through their brains.

    You're hard to fight Alzheimer's. You take everyone you touch and we're ignorant of that. As we see are the faces we love becoming more childlike and forgetful.. It's almost sweet. "Awwwe," we say. "Look at the sweet old person with the far off look in their eyes." You can't fool me Alzheimer's. I KNOW you're in there.

    Alzheimer's, you've made an enemy. I will tell everyone I meet about you. I will make them understand how you hide ad deceive. I will ask our government to put money behind killing you. I will make you come out from behind those loving eyes and face the world for the inhumane thing that you are.

    It's the least I could do in return for all you've taken from me.

    Sign me, I hate Alzheimer's

  31. My mother has devised her own strikingly original and cleverly defiant way to cope with dementia. http://kronstantinople.blogspot.com/2014/11/i-did

    When she said she had been raped during the night, the facility hurriedly destroyed all relevant evidence and waited five hours to call me, to see if I thought we needed to "bother" calling the police, since she had "forgotten" what happened and seemed fine. It was an outrage. http://kronstantinople.blogspot.com/2014/11/if-tr

    I am appalled at the neglect of my mother's nutritional, emotional, medical and intellectual well-being that is being provided by this $74,000=per-year facility — but the other options seem even worse.

  32. I visit with a alszheimer patient sometimes she talks a lot about whatever she is thinking the nurses at the home say she is agaitated is this correct

  33. My 82 year old Mom has recently been diagnosed with Alzheimer's. My wife and family live in Florida while Mom lives in Indiana. My struggle is in making the decision whether to move Mom to Florida or to relocate to Indiana.

    Does anyone have a similar experience that could offer advice or suggestions?

    Thanks so much.

  34. My mom has Alzheimer's. I have been writing as a way to cope and share our story, and in a small way to advocate on behalf of those enduring this terrible disease. Would love to share it with ya'll:
    https://sparkasoul.wordpress.com

    In peace and solidarity.. Jodi

  35. My 75 year old mom has Alzheimer's. I have been writing as a way to cope and share our story: https://sparkasoul.wordpress.com

  36. I have a recent interest in Alzheimer's awareness. I became aware of a woman who did a living will and was specific about her wishes regarding Alzheimer's, but because the living will was not specific enough she was kept alive much longer than she wished and suffered many injustices because of it. I also recently became aware of a living will that is written specifically for Alzheimer's disease and I can't help but think if this woman had this particular living will in place, things would have been differently. I feel it necessary to pass this information along as I feel it would be beneficial to anyone living with Alzheimer's. The site is http://www.alzheimerslivingwill.com I currently have one and can rest assured that should I fall victim to the disease my final wishes will be respected. It is specific down to nourishment and losing the ability to recognize food as necessity. I just want to spread awareness that this living will is in place. So many people are kept alive long after the brain is dead and their dying wishes go overlooked .

  37. Please look at this wonderful music video which is called Remember Me (Anthem for Alzheimer's). The music is by Chris Mann, (who is currently starring as The Phantom in the U.S. Broadway tour of The Phantom of the Opera) and his wife Laura Mann. The video was artfully directed by Laura. I know you will want to share it with everyone!
    Link to the video: http://bit.ly/RmVIDEO
    Links to the music "Remember Me" A portion of the proceeds is donated to Alzheimer's research.
    Amazon: http://bit.ly/RMamazon
    iTunes: http://bit.ly/RMItunes

  38. My father has been diagnosed with Alzheimer's and dementia, of recent he was admitted to the hospital with bacterial pneumonia. While in the hospital he was agitated and had refused to take his medication. In addition the hospital took him off all of his medication that he was in at home without telling us. My assumption is part of his actions may have been withdrawal from his pain meds as he also has a metal rod in his back with 6 screws. He was not been able to come back home as his lack of being able to eat, bathe, use the facilities and many many outbursts have gotten to a point where we can't care at home for him. He is in a very nice memory care facility however last night he had such an outburst that he threw the lamp, broke a table
    And almost threw the tv on the ground because we were trying to give him his meds and change his clothes. Is there any medication that we can give him to calm him down so to speak.

  39. I am new to this blog. My husband has Alzheimer's. Tonight for the first time he got up at 1:30 and was adamant that he was going golfing and his tee time was ready. He got dressed got his golf bag and went out. I didn't k ow what to do. We live in a 55+ community on the 3rd floor. I was getting my shoes on and he came back in the door with his bags and said he forgot his shoes. I asked him to sit down for a minute and have some Pepsi. I don't know what to do if he does this again. We have an alarm on the door but he was so adamant that I undid it and let him go. How should I handle things like this if they happen again?

  40. It’s really a cool and helpful piece of info. I’m glad that you shared this helpful info with us. Please keep us informed like this. Thanks for sharing.

  41. I was lost in the world of advocacy for years and years…mainly because my mom had AD and I was her soul caregiver without any assistance. Mom was also blind and had over a dozen other deadly diseases. I had no health care of my own all those years and walked around with painful abceses and cancers while trying to do a 24/7 job all alone without any kind of training other than caregiver chat rooms or support or competent legal or financial planning of any kind. When mom broke her hip one day, every caregiver's worst nightmare come true, she ended up in an abusive nursing home…trying to move her against and document the abuse I was actually arrested and beaten and drugged after pointing my camera at some medical director's mercedes benz who reported my camera as a "gun"…it was a nightmare…my health was ruined, our savings seized, and both of us were abused by the system. I barely survived the ordeal, my mom did not, she was killed of dehydration because I was unable to take care of her myself after having also been abused. Years later I still suffer and there was nobody to help me pick up the peices so I almost froze to death this winter. I will not even have social security. I wonder if I should just die now, there is no help…they killed my mom with abuse and neglect and they stigmatized and destroyed me. Years later I still need help getting a way to survive and I do not know what to do because there was no help so I am totally alone and totally destitute and suffering, even my food stamps were taken away because I tried to get help but there is not help for us, only drug addict and alcoholics and ex cons etc. I wonder if I am the only single caregiver that was ever treated this badly, I have in my years in forums and chats run into others that had been treated even worse, but they are now dead or homeless and soon I will be too. Here is part of my story. I am officially a non person.

  42. Hi,

    We at Shapiro + Raj, a research firm based in Chicago, are looking for national feedback from
    non-professional Alzheimer’s disease caregivers (spouses, children, friends, etc.) on new concepts pertaining to the condition. This study offers your members a rare opportunity to speak their minds to the companies working to develop solutions for their loved one with Alzheimer’s disease.

    On July 6th & 9th we are conducting paid 45 minute telephone interviews open to national caregivers.

    We are also conducting paid in-person interviews in the Chicago area on July 20th and 21st.

    This does not involve solicitation by any means, and my company is designed to be a third party to execute the research without bias, keeping all of your and your members' identifying information completely confidential from the research sponsor and from anyone else for that matter.

    This is opinion-based research (not a clinical trial.)

    Anyone interested can reach us by phone at (312) 676-8085 and refer to project #351 or they can follow the below link to go through a brief screener and we will follow up based on their qualifying responses and research openings. Please share with other caregivers!
    http://bit.ly/1GqmcWR

  43. I am just starting to be in an A4 study. I am interested in up-to-date information and statistics. Very disappointed that this blog site ends in January 2014. I know that newer facts and theories are emerging almost daily. Can you tell me where to find information that is less than 1 1-2 years old? One correlation I'm particularly interested in is the use of HRT in the preclinical stages. There seems to be varying opinions, but they aren't easy to find on the Internet.

  44. i have been the sole caregiver for my mother who is in late stage alzs.I yell at her occasionally and its like i cant help it. Today
    I made homemade vegetable soup and she helped me by peeling the potatoes, which by the way she still does well. We were having lunch and I had to excuse myself to go to the bathroom and when I returned to the kitchen there she was over the vegetable soup pouring her soup in there and cornbread in the whole pot of soup and i started screaming and i called her a idiot. I feel so bad right now I hate myself and should I know. Has anyone ever did this before? I know it doesnt seem like a big thing to anyone reading this but at this time it was really big to me.

  45. I am rather confused. My mother is in a nursing home in Indiana. They keep telling the family that she must be on a Gradual drug reduction. She was on aricept for quite a wile and it seemed to help. Then they just removed many of her drugs. She now stutters constantly and they say it is not the drug removal , it is merely end stage alzeihmers . We were told that neurologists have determined there are no drugs that really work for dementia. I am extremely confused. What I hear on the TV is not what I hear from CMS. I think they just don't want to pay for the drugs. Her meds are controlled not by the nurses but they are controlled through the social worker? Where are the Psychiatrists and Neurologists? Debbi Goodson

  46. What readers desperately need is answers. Answers every step of the way. Many families are frozen in fear with no sense of direction when they hear those ominous words, "your loved one has Alzheimers's disease." Cameron Delongs book, "through Toadys Eyes, shares with the reader the exact topic they will likely encounter. The topic is simply the beginning. You feel you can at least breathe after this guidebook literally lends you the knowledge and a multitude of ways to assure your loved one is being cared for in the most optimal way. The Author takes 17 years of trials and tribulations and wrote a book that you will not regret the time nor the expense. Is the best I have found.

  47. Do you have any information of Glenn Campbell participating in the clinical trial for NOBLE Study T-817 by Vanderbilt?

    Thank you.

  48. I read "A Note to Caregivers from Dan Gasby" and felt like I was looking in the mirror and reading my diary. Having just filed an application to act as a facilitator to meetings in my locale, I was inspired, to say the very least.

    Almost everyone I know is already touched by some form of dementia; and I feel, at times, as if I'm just holding on myself from that long walk into a separate reality. The walk won't be alone with the help of people like him and his wife and the message they've shared.

  49. Please post information distinguishing between young onset and early onset Alzheimer's disease. My sister was diagnosed at age 50, and I have had no luck finding others with this experience. She had early onset at a young age, and is now in late stage at 53. Younger onset is not early onset.

  50. Hello lovely blog team, I'm looking for places to guest blog this spring: both to share lessons we've learned as a family over the past 10 years since my mom's Alzheimer's diagnosis as well as to spread the word about our new book The Grace of Dragons: Receiving the Gifts of Dementia Care Partnering. Examples of our work live here: http://www.collectiveself.com/category/care-partn…. If we seem like a good fit, and you welcome guest bloggers, let me know. I'd love to connect.

  51. How do you become a guest blogger? I have a blog about my mom called The Lemon Bar Queen. I'm a RN and my focus is home care and hospice. I have been writing for 2 1/2 years.
    Jodi

  52. Before you become the caregiver for your parent with Alzheimer's, be sure and have any legal documents they created reviewed by a lawyer. You want to be sure you have the legal right to make the decisions concerning your parent's health. Siblings or other relatives may want to intervene in health care decisions even though they are not the one taking responsibility for the daily care.

  53. my mom is just turning 83 and up to a year ago last February, I was her caregiver, and being her son. I came to realize that I was doing things that a few years ago I would have said you were crazy to even think I would be doing. But loving her as I did. I did step and do what had to be done. About 4 years ago she was diagnosed with early stages of Alzheimer’s. I realized that her condition was worsening every day, as well as her strength. Through the help and canceling from my girlfriend. One morning due to a fall she had a few days before she fell just in front of me. So after a day at the ER, the doctor there as well as her family doctor I decided on placing her into a nursing home and since then her Alzheimer’s gotten worse and with all her problems, my girlfriend says I need some support and need to vent my feelings and emotions on a blog. Anyone that has been through this, please feel free to add any thoughts that might help me through this part of her and my life..

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