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 Vice President of Public Policy and Advocacy. 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.

Lee Ferrero
Lee Ferrero was diagnosed with younger-onset Alzheimer’s disease in 2008 at the age of 62. In 2009, Lee retired after 22 years as President and Chief Executive Officer of Private Industry Council (PIC) of San Luis Obispo County, Inc. As a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group, Lee is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure. Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

Val Ferrero
Val Ferrero is a Senior Admissions Advisor with California Polytechnic State University in San Luis Obispo. She received her BA in Social Science from California State University. In 2008, Val’s spouse Lee Ferrero was diagnosed with Alzheimer’s disease. Since that time, Val has committed herself as a care partner and advocate in the fight against Alzheimer’s. Val is currently involved in a support group with her local Alzheimer’s Association chapter and has contributed written pieces to her local newspaper. Val is interested in raising awareness for Alzheimer’s disease especially with regard to the need for caregiver support. Val and Lee have been married for 41 years and together have 2 children and one grandchild.

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. Before joining the Alzheimer’s Association, Johns spent more than 22 years with the American Cancer Society (ACS). He serves on the boards of Research America and the National Health Council.

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).

  42 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

    • There are indeed many rsoaens why the elderly can be depressed and you seem to have covered a great many rsoaens here. Another important reason that I have read about is due to medications. Older adults are far more likely to be taking a number of medications and these medications can cause depression by themselves or as a result of drug interactions. Because of this, it is important for us to be mindful of these drugs we or a loved one might be taking that might cause depression.

    • Keep sharing your story and writing JWo, it’s how we’ll cure this damn thing. My Mom has had it for 10 years…

  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

    • Hey Joe,
      I totally hear you, and until I was impacted with my dad being diagnosed with Alzheimer’s, I was guilty of it being “someone else’s problem” I just didn’t know anything about it really, other than it was an old age disease, how very naive I was, and like so many other horrible diseases, until it hits someone personally, there doesn’t seem to be much of an interest taken. I know different now, I’m just so sorry that it took me so long to realize that there was something this important missing in my life, and that is being a part of making something happen, realizing that there is something so much bigger than all of our little day in and day out trivialities of life, that there are lives being turned upside down, inside out with Alzheimer’s & other monstrous diseases.
      It took my dad’s diagnosis with Alzheimer’s to make me get off my fanny and get involved in something more important than my own life, and now my mission extends to not just my dad, but to everyone who is suffering from AD or every caregiver that has or is losing someone to Alzheimer’s. Until there is a cure, I will remain on this mission.

      • It’s maddening, every day there is a new research that says if you eat this or don’t eat that you won’t get alzheimer’s! They are kidding themselves, and doing a disservice to the real research that needs to be done to combat this disease.

  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!

    • So your brother would have been classified as early onset? Correct? How old was he when he was first diagnosed? My wife was diagnosed in Nov 2009 at the age of 56. I read a story here in our city of a assistance to one of our mayors who had passed away at age 60 and was diagnosed at the age of 55. This is when I first heard the term early onset. I've been told that the life span is far less then a normal victim of this disease. I would like to learn more about this whether it be reading material or some kind of testing that is available. Do you have any resourses that I could look in too.

  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.

    • June 20, 2012 "The Longest Day" supporting Alzheimer's Research……Find a great Support Group…..It is a devastating journey with many bumps in the road…..Take One Day At A Time…..
      I cared for my husband of 56 yrs 24/7 in our home…..We had to be separated by Alzheimers for the first time in our marriage in Nov 2011 as I became ill & I could no longer care for him at home. He has adjusted to living in an Assisted Living Memory Care…He is safe & well taken care of….AND LIFE GOES ON…..NOT easy but start out with the baby steps & again…..Find a good Caregiver Support Group….We have no other choice but to go forward & cherish our past memories.
      Someday There Will Be A Cure……Amen

  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

    • June 20, 2012 "The Longest Day" supporting Alzheimer's Research……
      Many thanks from Anita's Team (Mission Oaks) to family & friends for your love & support… We raised over $1,000.00
      "Someday There Will Be A Cure"…..:The Love of My Life" for the past 56 yrs MOE participated with all of us & enjoyed every moment 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
      Love,
      Anita

  9. Please share this video and #OneThing that you never want to forget to help end Alzheimer's. http://www.youtube.com/watch?v=xeHTTonG6co&fe

  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?

    • Our Mother, in her early 70's has Alzheimer's and was just hospitalized for a UTI !! …They put her on antibiotics… and yes there needs to be more info in relation to ALZ sufferers and UTI.

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

    • Yes. My dad. Oy vey. What a mess. Its so hard to see my mom who used to hold everything together swallowed up in that mess! Don't get me wrong! He has been lovingly caring for her for over 12 years (God bless him!) but its so hard to come & visit them. I'm a nurse who lives out of state, and am trying to give 5th & 6th stage assistance, but ugh!!!!!

  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.

    • Lisa- this happened with my dad too but I was the one giving the showers which was awful and was sooo time consuming…..is there a friend or other relative that could take him out of the house while you sneak over to get things done….this is what I had to resort to! The check writing is so sad……my dad could not write a check at all the past 6 months so I had to take away all his financial documnets etc which made him very angry but he was missing bill payments etc and I was his poa. When we would go out it would take at least an hour to get him dressed and in the car and it was so frustrating for me running around having kids myself and working two jobs. If I rushed him it was worse so I had to take days off wok etc…….it is heartbreaking and exhausting!

  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.

    • I have a dear friend that lives about 2 hrs from me. She told me about 3 yrs ago she had memory issues. ShE is currently at home with paid 24 hr caregivers. Her husband died about 9 months ago. She has daughters, two are nurses that live close by. I have visited with her a couple of times. We had a lovely lunch together the last time. I would like some suggestions as to how I can spend some quality time with her. I can visit at least once a month. Any suggestions you can give me would be most appreciative.

  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.

    • Trish, hope things are as best as can be for your mom and you at this point… I know exactly what you mean by those seemingly unimportant things that were actually early signs of Alzeimer's. My mom had them – I remember thinking that she was upset at my dad, or too wrapped up in something to see things straight but whatever it was, it didn't make any sense. Another thing was that we could only talk on the phone for about five minutes, then the story would repeat itself and I knew it was time to hang up! I never thought it was Alz. just, oh wow, mom's getting senile… That was about seven years ago. Then, five years ago my dad died, and I became the main caregiver. I discovered how bad she really was, and how my dad was coping with it the best he could, for as long as he could. My mom insists on dressing herself as soon as she's out of bed in the morning. If I don't get to help her, she will put clothes on top of her nightgown, a tee shirt around her waist and so on, and yes, almost always two different shoes, but left foot and right foot are correct. Sometimes I don't know if I should laugh or cry and lots of times I do both. (silently, of course!) Stay well!

  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.

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