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Recently, there has been some discussion about early-onset Alzheimer's disease. Having early-onset Alzheimer's disease means that symptoms develop before the age of 65. Of all the people with Alzheimer's disease, only 5 percent to 10 percent develop symptoms before age 65.
Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's exceedingly rare. It is more common to see someone in their 50s who has the disease. I have had the opportunity to meet many individuals with early-onset Alzheimer's disease and their care partners. Their stories are different than those who have symptoms in their 70, 80 and 90's.
Often persons with early-onset Alzheimer's disease are actively in the work force at the time of their diagnosis, in fact, it is often 'on the job' where clues surface that something is wrong. Those impacted with early Alzheimer's disease and their care partners may experience financial challenges, changes in their relationship, as well as isolation from friends and activities. They may still have children living at home and face an uncertain future.
Yet, for those recently diagnosed with early-onset Alzheimer's disease, there is life after a diagnosis! With a diagnosis of early-onset Alzheimer's there is now some peace of mind in knowing the cause of the changes in thinking and performance.
There are medications that can slow the progression, information is available from groups such as the Alzheimer's Association (check out Safe Return) and there are support groups across the country for persons with the disease and their care partners.
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This disease just like all others will never have a cure. Drug companies don't give cures as they no longer will be able to sell their drugs.
The Government does nothing to stop this and you can diet all you want but my sister is dying of this and there will never be a cure.
Hi, my father has been diagnosed with Dementia. as of last month he was prescribed Remeron and Seroquel along with sleeping aid and vitamins. I have seen my father's mental state decline very rapidly. I am comfused and worried that within the last month he was able to have a conversation and now all he wants to do is stay in bed and has no idea what to do. he gets up and repeats the same things over and over.it seems that my dad is a Zombie, he cannot hold a conversation and this progressed way to quick. can anyone out there give me some feedback?
My maternal grandmother and my mother and two of her sisters by my grandmother's first husband all suffered from alzheimer's. I am 65 and have seen the signs of dementia during the past three years. I had to retire from my teaching job because of it. I live near NIH in Maryland- where can I get help
I have just turned 40, but in the last two years I have been struggling with remembering words and finishing sentences. It's driving my children crazy. I forget things all the time and my friends are noticing as well. My father was diagnosed with EOAD in his 50s and he passed away at 64. My grandmother also died of Alzheimer's, but was in her 70s. I am just wondering if I should be concerned at this age or just wait a little longer before I approach the doctor.
My wife is in her 9th year after being diagnosed with EOAD at age 49. I would like to chat with Priscilla and Donna about the experiences we have had.
I will be tested soon for EOAD. I would very much like to chat with someone who has been recently diagnosed with EOAD. To hear from them what they see changing, how they feel, etc. would be very consoling to me. My dad had AD, however, there were no tests to determine EOAD or even AD back then. I believe I may have inherited the gene. My adult children believe I have EOAD. I'm thinking I may have it.
Question: I am 56. I forget names, words, technical topics related to my work. I am a football fan... can't remember the names of players. Seems my memory of childhood, etc., is better than things I experienced in the last 10 years. This has become very noticeable. Should I be concerned?
I have many family members that have suffered from some form of mental illness. My mother suffered from moderate to severe dementia the last 5 years, and recently died in May. My sister who is 59 has EOAD and now needs full-time care. The best advice I can give is to love the person with the disease and try not to be too hard on caregivers, including yourself. Also, you need to get the right level of care for the person who is sick. Once you do that, things will get better. If you try to do it all yourself, you will burn out in a matter of weeks or months. Talk to a doctor or see a social worker to sort through all the issues that need to be handled. And also, dementia and AD does take away your loved one, but not everything changes. Their personality is still there, and they do know you are helping them even if they can't acknowledge it. Pray some new meds become available to help AD. Personally, I have learned a lot going through these medical issues with my family. And, if it does happen to me, which is likely, I am not afraid for myself. I plan to enjoy the life I have today instead.
My husband is 53 years old was diganoise at 51 with early on set alzheimers. Currenty taking aricept.Is going down fast.Working has become harder and is looking into disability throug his work. I am scared beyond words.
My husband was diagnosed at age 58 with MCI and he complained of problems seeing. Took him to a specialist and he said he had homonymous hemiamposia. He also had many changes to his eyesight and he did not need new glasses. It was his brain affecting his eyes.A few months ago I read a blog about EOAD and I gasped. The woman was talking about my husbands symptoms to a tee. Her husband was diagnosed with Peripheral Artery Disease. No one EVER mentioned that. It is a rare form of Alzheimers. It was found on a UK site NOT on our Alz site. I wonder how many people have this form of Alz. that do not know about it. He had all the mild symptoms of Alz but complained all the time that there was something wrong with his eyes. He went from a impatient man to a happy smiling easy going fellow which I am thankful for. He now has progressed to stage 6 or 7 of Alz. He also has balance problems and his muscles are rigid. I wish I could find a site that deals with this issue and others who might have been diagnosed with this.It has been a long haul and if I did not have fibromyalgia it would be easier to deal with. I think. Pat
My mother in law is 77yrs old and has lived with us the past two yrs. She battles Alzheimers which is worsening quickly now its in the more advance stage.
My father in law ( died early r/t cancer ) mother and sister both were in nursing home and died r/t alzheimers. To my knowledge all of these folks had the older age type alzheimers.
My husband is 49 and has battle some problems the past year and a half. Memory, lack of motivation and went from being a kind gentle person to easily agitated and irritated. Neurologist done map testing ( he done good however he is very smart man ), lab work and tested for depression. All seemed ok. MRI showed minimal changes r/t vascular ischemia which they said was normal. Examples of forgetffullness is going to seminar in New York. Forgot to make room reservations and never registered for seminar. Many other examples however he believes its stress. Even his boss has noticed him forgetting issues he showed remember.
Neurologist said since there were four kids born to his mother and father ( each with alzheimers in family ) that 1 of their children will have alzheimers. Is this true? And could it be the one called early alzlheimers?
I am a nurse for 9 years and was a hospice nurse for 4 years. My mother has early onslet alzhemiers disease. I know what my mother is going to experience. My worst memory of a patient was with alzemiers disease. She slowly rotted away from the inside out. The smell of rotting flesh burns in my nose. I am scared, because I see what the future holds. I am scared of loosing my mother. My bestfriend. I am scared that my children will not be able to grow up with thier grandmother. I am scared of loosing my bestfriend. I am scared of getting the disease myself and passing this on to my children. I am scared of causing my children to go through the same pain that I feel. I am only 30 years old and I have already started to loose my mother. I keep saying I rather have 30 years with my mother than 100 years with most other moms. The pain remains. Does any one have and advice with coping with this horrible disease.
Hi, sorry about my bad english. I would like to know more about the behavior. My husband is 59 and has Alzheimer since 2008. He is not longer the same, and treat me as a nothing else. He told me he has another woman who he loves now, and can not be with me, didan't sleep in the same bad, and rejects me a lot. Is this normal?
I'd like to say something about genetic inheritance. If one parent has a gene and you inherit it, that's still only 50% of your genetic inheritance for that gene. That's because you also get 50% of your genetic info for each gene from your other parent. Thus, just because one parent suffers from a particular ailment does not necessarily mean that you will. It increases your risk but is not the same as dooming you inevitably. It works the same way if you get sick and have kids. You only give your kids half their genetic material. The other half comes from their other parent.
My other comment has to do with time. When we see a parent suffer and pass on from some dread disease, it is natural to feel scared for our own future. But science and medicine continue to make progress. A lot is known now that was not known 10 years ago. 10 years from now they will know more. That's the bright spot in the dark night of dealing with Alzheimer's. It's a slow disease. So hang in there. Time may be on your side. Research is continuing all the time -- on what causes this, on how to delay it, how to stop it, how to cure it.
How do I get medical professionals to take me seriously when I ask about early onset A? I'm only 57 and my primary care dr just wants to chalk my complaints up to age.
My mother in-law died of early onset AD. I am reading Still Alice and I am terrified for my children. I can't stop crying - I can't imagine hearing that they may carry a gene that would mean they would also get this. They are only 6 and 3. I am 40 - I won't be able to help them. Do they have a 50% chance of developing early onset AD even if my husband does not have the gene? How should one prepare?
I didn't read all the comments, but NO WHERE did I see anyone talk about treating the toxic cause.??? How many still drink soda out of cans and/or plastic? How many cook with teflon? How many cook in aluminum?
How many are detoxing the heavy metals we get slammed with daily> How many are taking the right supplements? What kind of toxic laundry soaps and detergents do you use? How many use toxic hair colors? How many paint their homes with toxic paint and varnishes?
Sorry folks but I am 66 yrs old and began the clean up journey over 15 years ago!! Not easy, but I did it as I didn't want the effects of alzheimers?
Were you aware that their is Lyme Alzheimers? You don't have to have tick bites to get Lyme disease. Lyme is endemic world-wide and it must be addressed.
How many still drink the diet soda crap with Aspartame, Splenda, Fructose, Corn Syrup, etc., etc., etc. etc. How many eat NON-GMO foods and are swallowing the pesticides and herbicides DAILY??
Putting band-aids on problems we have allowed in OUR TOXIC WORLD will continue to kill you at early age.
There is no excuse, CLEAN UP YOUR ENVIRONMENT, HOMES, FOOD AND LIVES.
Sorry to be so toughm but it is up to YOU, the consumer, to stop the toxins in our foods!! How many buy water in plastic water bottles, THEN re-use them..
My mom died in Feb 2010 at age 81 after her AD diagnosis 15 years ago. We didn't know how it rips out your heart to watch someone you love deteriorate - she stopped cooking, cleaning - she even got violent - throwing things and cursing - these things she never, never did -- she was a caring, loving and giving person -- Before Mimanda was introduced in the States, it was approved in the UK and so we sent the prescription overseas and gave the drug to my mom 2 years before it was approved in the States. It only helped for so long and then the family watched as she slowly reach the Advanced stages, feeling helpless. We never even considered putting her in a home, my siblings and my dad cared for her and she died in my sister's home in San Antonio comfortably and with dignity, even though she had been gone already a long time. I am proud that we were able to care for her at home. I wouldn't wish this disease on my worst enemy - It robbed my mom of her life and my parents never enjoyed the "golden years." I miss her so much it hurts - When I hear all the things you should do to prevent the disease, like read and eat healthy, it makes me sick -- my mom spoke 2 languages fluently, she read and studied and was like a geography book when we traveled and she still go this disgusting disease. All I can say is pray and be patient and seek out and use any help you can find. So right after my mom's death, my dad is diagnosed with Lewie Body Syndrome, a form of Dementia --G
my husband died at age 54. He had been diagnosed 5 years earlier with Alzheimer's disease. Looking back, he had signs of early-onset alzheimer's disease between the ages of 25-40. At the time he was diagnosed, no one had ever heard of Alzheimer's disease. He was diagnosed in the '70's.
my wife, soon to be 65 just got the reults of her brain scan and it shows loss of brain tissue and possible small strokes. she goes to the gym everyday and we walk evryday also. but she forgets and gets confused more and more. we will see the doctor soon and hope, if nothing else, it's mild alzheimers. i'm scared to death. she's taking it a lot better then me.
Kate, There is an early-onset alzheimer's disease, but it sounds like your husband needs to see a specialist.
Tom, I am sorry to hear about your situation as it was not handled correctly. You should do a little research on the internet to see what kind of help is available in your area. Try contacting the Alzheimer's Association . There are adult day centers (Active Day, etc.) that can pick up your wife for daily activities. There are also in-home care services available, but you really need to check with your insurance and find a good doctor to help you. I wish you the best.
I have just finished reading all of the "posts". I was hoping to find some helpful pointers of some kind from
somebody other than "posters".I saw nothing but stories about the problems of Alzheimers and its affects on the patient and the caregiver. Exactly what is the point of this site?
My wife , aged 69 was recently diagnosed with this
dreaded disease and sent home. that's it just sent
home , from Cleveland Clinic. nobody talked to her nor
spent much time with me discussing "our" problem. I
did not create a ruckus nor complain about anything.
I am sure the testing was accurate. I was somewhat
shocked upon our return home to find a message on
our answering machine that the doctor would be
calling me to discuss my wifes condition. that was over 2 months ago, see no sense in calling him back.
this site seems about as informative. Just a bunch of
comments from desparate people, as I am also.
I am sure my wife will outlast me, then what? Yes, we
have LTC Ins. so what? and when that runs out, then
Is there such a thing as early-early Alzheimer's? My husband and I are 61 and got married 6 years ago. Since then I have noticed many cognitive impairments, e.g. inability to plan, anticipate, doesn't finish tasks, leaves things all over the house, up and down the stairs all day, memory loss, etc. My friends say "that's just men". I just say that his brain is just not working right. Yesterday our naturopath identified that he has brain inflammation and he will be starting on brain nutrition and supplements as well as an exercise program. Any advice?
My mother was struck with the disease in 1996. It broke my heart, and my loving dad kept at home and took care of her. He died in 2000 with a massive heart attack. I think it was from the stress and depression. I helped him care for her and work a full time job. When he died my 2 sisters and I took care of her until her death in April 2009. I miss her so much and my dad. Anyone who has dealt with this dreaded disease has my very loving smpathy. I hope and pray that there will be a cure some day. I am so scared that myself or other family members will get this. The only thing that kept my depression down some which was not much was the happiness of being able to take care of her and be with her. I will never get over the agony and pain that I've been through from this and miss my mother so much each day that she is not here.
Hello fellow EOAD'ers. My name is Lisa. I was diagnosed with EOAD/YOAD 2 years ago at age 53. I'm now 55 and still my own caregiver. Please go to www.alz.org and check the Message Boards. There's a lot of help and support there!
My mother died at age 57 in 1998 wit EOAD. She had a major car accident in 1973 which she suffered from severe head trauma. For all the people out there with EOAD or with a loved one with EOAD did any suffer from a head trauma?
I also want to know what are your opinions are on genetic testing for children of EOAD victims and if any know where you can have it done and how much does it cost?
My sister was diagnosed last year with early-onset Alzheimer's after she lost her job in Sept. 2008. She had a fall at work in Nov. 2007 where she hit her head. Since that time her memory began to decline noticably. After MRI, neuropsycg evaluation and a PET scan it was determined her brain showed some abnormalities that could be consistent with an early Alzheimer's type problem. She is taking Namenda twice a day and Aricept once a day in the evening. Generally she has no problem taking morning meds, but taking her night time meds (Namenda & Aricept) seem to be an issue. She resents being reminded to take her evening medication too. She still drives from time to time locally, but she has gotten lost at least one time that I know about. Taking her car away will be a challenge since she still feels she is a good driver. I'm 15 months older than her, and I worry I may be next. It is so hard to see my sister decline so quickly, especially since she has always had the best memory in the family. Although there is history of Alzheimer's disease on our father's side of the family, I still wonder if her head trauma during the fall in 2007 might have something to do with her condition. None of our relatives who have or have since passed on with Alzheimer's actually had early-onset Alzheimer's. Thankfully we have a strong family support system, but financially the future looks grim for her in a good long term care facility.
Hi, My daughter-in-law passed away at 38 with eoad, her sister died at 34 with the same symptons. Her mother died at 38, same symptoms, The mother and sister were diagnosed w/Huntingtons but had no dna test. my dil 's dna tested negative for Huntingtons and we had testing done at washington u by dr john morris and were told she had eoad. the auopsy confirmed the diagnosis. we have 2 grandchildren we are very concerned about, ages 8 and 12 and can't find any info or help on this subject. Any ideas?
I feel for all of you. I know what its like. My dad was diagnosed almost 2 years ago at age 53. I am only 21 and have a 14 year old brother. This is by far the hardest thing I have ever had to go through. I'm angry and think it's so unfair, I know that won't help but I can't help it. I think my brother and I are both in the avoidance/ denial stage. I don't visit my dad as often as I should because it hurts so bad to face the reality that he is a different person. Then I feel like I terrible person for not visiting as much as I should. I am so scared for what the future holds. I have no idea what I will do. How do I decide at 21 whether I should try and care for my dad or put him in a facility. How do I put him in a facility when hes in his 50's and everyone else is in their 90's. I break down all the time thinking about the fact that theres such a good chance my dad wont be there to walk me down the isle someday or to meet his grandbabies. Like other people have said, Alzheimers is a monster!! It's so heartwrenching to watch my dad slowly deteriorate until he eventually dies.
Your story sounds very familiar. Our loved one had similar problems - trouble putting sentences together, forgetting about laundry, etc. She doesn't cook anymore for safety reasons. She was diagnosed with early onset about a year ago, age 60. Her friends were starting to notice and she withdrew from them. It sounds like seeing a neurologist is a good idea. They will give a verbal test and an EEG to help diagnose. I hope this is helpful.
For the past four years my wife has mentioned that she feels her memory is not as good as it used to be; she is 55 now. The other thing she said is that she has trouble finding common words and will sometimes make a sentence with a word that she knows is not the proper one. I personally do not see a great change in her language but when I hear her talking on the phone with friends I notice that she is does seem to find it difficult to find words sometimes.
In the past year she has a few friends who when she asks them about something they will say, I just told you about that yesterday. Another two events in the past four months was when I mentioned her niece’s name, a niece whom she spent two weeks living in her home a year ago, she didn’t recognize her name and then when I was talking to her about ten days ago and mentioned a young lady whose parents she met and exchanged Chinese cooking knowledge with and she did not recognize the young ladies’ name until I reminded her.
But finally why am getting a little bit more concerned is that recently she has been forgetting more often and leaving the top burners on the stove on. Just in the past month she has probably done this about five times.
I don’t see any of the extreme items mentioned in this blog but I am wondering if these type of behaviors were experienced by your loved one who were diagnosised with early onset?
In answer to Rene's inquiry. Her mom's symptoms sound that Lewy Bodies dementia, which shares symptoms with several disease, especially Alzheimer's and Parkinson's. A thorough examination by a neurologist can help.
I also just finished the book "Still Alice" My mother had early onset/pics disease which made her behavior bizarre and violent until she was over medicated and went into an almost coma like state. Now she is off most of her drugs and is slowly progressing into the final stage. I'd like to be teasted for APP,PSI,PS2 does anyone know the approximate cost?
My husband is 62, has been on Aricept for 6 years, and is still in the early stages of Alzheimer's. I wish there were more help out there for others like him who have lost the discipline to be self-motivated. I can't get him to play games, which he has never enjoyed. The only things he will do is read and walk the dogs. Being thrown in a group with others who are more advanced is depressing to him. While there is a lot out there by way of support for the caregiver, I'm not finding what I need to help him. Any ideas?
I am 33 years old.I am confused because my mom was diagnosed with early eoa at 45ish. Originally we were told that my grandmother had huntington's but since there was no genetic testing in the 60s she was miss diagnosed. I still don't believe that what my mother has is eoa. She lost her balance and walking abilities before her memory. She cannot take care of herself. She can barely feed herself. All the info I read talks only about memory loss. What about all the other symptoms?
I am a 46yrs. women who has Celias Disease and I'm on the Excellon Patch. Why? My doctor put me on to see if my memory gets better. Any Advice would be great.
My husband was just diagnosed and he is 6 weeks shy of 31 years old. We have been noticing serious changes in the last 6 months. He has Tourettes Syndrome and went to the neurologist for this when they did the brain scan and said it looked like early onset Alzheimers. It was a total shock. They are still not saying for sure, since he does have Tourettes. But they put him on Aricept. I am scared to have to watch him wither away at such a young age. We also have 3 young children, I don't know what to tell them. Not sure if I should wait until we have more info and the doctors can be a little more definative about this really being the correct diagnosis.
My dad passed away a yr ago from early onset at 64. I am very concerned for myself, my siblings and my children. I just read a book on this disease "STILL ALICE" While it was an insightful book for us to read into what our love ones feel (its fiction but based on all real facts) it freaked me out b/c it seems that if my father had one of these three genes, he had a 50% chance of passing it onto us and then we have a 100# chance of getting early onset. What do you know about this?
Hi Ken J,
You have not posted a comment in almost a year. Are you still out there. It has been 13 months since my wife passed away from early on set at 60. I think I can help you and your son. Post something so I can try and help, it is a hard road. I have been through it.
Hi all, I am living in Japan with my wife and we just had a daughter and we suspect my mother in law has the simptoms of alzheimer. she is only 57 and I am so worried about our future and about the future of my little beloved daugther. I really hope to have support from her family otherwise we are going to face a long dark period. I bought her to our house yesterday to spend new year's eve togeather and the change of location was just too much for her. She thought I was her husband and that my wife was her sister this was too much for us. I try to put in all my patience. I was wondering if hospitalization is required at such an age? would it be better if we help her at home or not?
Hi, my dad was diagnosed 3 years ago with EOAD. He is now 57. Yesterday he became agitated and angry. He got angry with my mother and called the police, saying that my mom hit him (even though she did not). When the police came, my dad became even more angered that they did not believe his side of the story, and arrested him. He spend the night in jail. It was awful. He feels helpless because of the memory loss, and acts out in response. Now he blames my mom for him going to jail. It seems like he is going to hold this against her forever. He is not severe enough to be placed in a nursing home facility. He is still able to do all daily activities, drives, and runs errands. Worse, he knows that he has EOAD and is very self-conscious about it. He does not want to go to any type of facility at all. And it would be awkward if someone came to our house to "take care" of him. What do we do?
My dad is 49, and is getting to the somewhat later stages of EOA. Not sure which ones exactly. He was diagnosed when he was 43. His sister passed away from EOA when she was 42, diagnosed when she was 38. I wish I could say that there is life after EOA, but it's just not possible for me to say. I see what my dad goes through, and I saw what my aunt went through. My dad is so depressed and it kills me that there's nothing I can do to stop it. It's like a stranger has taken over. I hate being away at college knowing what's happening. It's so hard.
My mother died recently after 13 years as a victim of Alzheimers. Ten years ago, at the age of 58, myt oldest brother was diabnosed with early-onset Alz. Just last week my other brother was diagnosed at age 63 with cognitive impairment and short-term memory loss. This disease is taking my whole family. I am devastated and in mourning over this latest news. It could come stalking me next. I am 62. I was my mother's caregiver for several years and finally wrote and had published a book: "Every Da a New Adventure: Caregivers Talk about Alzheimer's Disease." I interviewed 5 other caregivers and one person with the disease and told mine and mother's story as well. This is not a self-published book. It is an intimate look at what Alz does to families and the difficult job that caregiving is. As my daughter says, You laugh; you cry; but most of all, you believe! If you're interested, the book is available through PublishAmerica.com and Amazon.com. If it is of help to anyone, I would be proud.
My father has Alzheimer's disease and was diagnosed when he was 74. My concern is that I suspect my sister who is in her late 50's may have EOA. Her short term memory seems compromised, her affect seems flat, and she seems to drift during conversations .She still works and her family hasn't mentioned they are worried about her obvious symptoms. My dilemma is I don't know whether I should ask her point blank about my concerns or if I should wait for her to bring up the subject. Any suggestions?
My husband was dignosed with EOAD in 04, age 65.He saw other DR. who says no EOAD.
He stopped his meds ate & lived healthier.
Is doing better but gets angry & verb abusive if I disagree with him. Ups & downs.We both work.
April 11, 2008 @ 11:00, I was told I have alz. I have had three oponions. I knew something was going on for a long time. I am 57 years old. I forget things, will start things and forget I didn't finish. I am now on S.S. disability. This is the hardest thing to deal with.My spelling and my han writing is so bad. Doctor's tell us this isn't a death sentence. Has anyone told them they have Alz? I do not feel sorry for myself, I can laugh about the crazy things I do, for now I can. I know one thing, If there is not a cure, my family will lose me. I have learned something and that is to focus on what is important and don't worry about tomorrow. My heart goes out to all of you that have the same problem.
I am 58 years old. I am confused between the term "dementia" and early onset alzheimers. I don't know up from down most of the time. I feel like I live in some alternate world and no one understands! My short term memory gets worse everyday. I feel so alone and isolated. Someone please know what I feel!
My mom was diagnosed last summer at 48 and she has symptoms for at least 3 years. Like Charlene my mom's weight has been effected, however with her she has gone from about 120lb to almost 300lb in about 2 years, I don't know how this is related to EOAD because she is not overeating, she can't seem to remember how to open the fridge never mind make herself too much to eat. This is one thing I never expected, the loss of functioning - she can't figure out how to go to the washroom when she's alone, she talks to the lady in the mirror, and doesn't seem to realize the tv is not real. Is the loss of everyday functioning to be expected?
My heart aches for each of you. There is really not much help available for the average (read unwealthy)person. My mother was officially diagnosed when she was 63, but we believe her symptoms started in her late fifties. At 71, Mom is mentally gone, but she is very physically mobile. I'm not convinced that the medications did anything for her. My father took care of her for seven years and was heartbroken when he realized that he couldn't do it anymore due to his poor health. I helped as much as I could, but I was afraid for everyone's safety. We put special locks on the doors. We had to hide sharp objects. Eventually, we put Mom in adult daycare. It was expensive, but the care was wonderful. The facility that she attended was not-for-profit and had a sliding scale fee. She has been in an Alzheimer's assisted living facility for about nine months. Mom is the youngest person in the facility by at least 10 years. My parents are not well-to-do and I help financially. My Dad still works in his 70s, because the expenses are so high. Their finances are ruined. We have gotten to the point where we just hope that this ends quickly. Alzheimer's is a monster. You are all in my thoughts – I know what you are going through.
Dear Beth and others,
I am a speech and language pathologist. I have worked with geriatric population with Alzheimer's,but have limited experience with early onset(only with two who were considered young). I am becoming more informed and involved as my sister-in-law was diagnosed a year ago with Early onset Alzheimer's and she is 52 years old. She had been having symptoms for a few years before being diagnosed. Unfortunately, symptoms have worsened significantly,and she is not able to be left alone at this point. For long term planning,I have found out that if you or your loved one is legally recognized as being "disabled", after 24 months as disabled, the person will qualify for early Medicare Benefits, which may be extremely helpful, especially in later stages.
Also, keeping busy and being "mentally " active is key to maintaining skills. Cross word puzzles, word searches, brain teasers etc keep the brain stimulated. I use a lot of word games and activities to maintain word finding skills and coherent sentences. Using electronic organizers to help remember appointments etc is recommended.I also put together picture communication books as people often loose their ability to communicate verbally, but may still be able to point to key words, phrases etc to get across messages. I put together picture albums using pictures provided by family members. I'm running out of space so I need to end this post.I'll keep posting any info I find and will try to answ
I too have been diagnosed with early onset Alzheimer's at 45. It's very stressful and I feel like everyone looks at me in a different way. I get anxious and paranoid that people know that I'm a bit "daft" and yet I can drive a car, bathe, and at work I have no problems.
I think that my husband sees me in a different way, worse, and maybe that he's scared. I try not to think negatively but I feel alone a lot. I also have Celiacs Disease, I can't eat wheat and foods with gluten which I think brought on the memory loss.
I also have been to a neurologist and had many tests, EEG, lots of blood work...
I don't know what to do next. I'm getting a second opinion because I want to know. I'm too young to be old and feeble!
Hi I am a 45 yr old female. Also an RN I am very scared. About 3 or 4 yrs ago I started with short term memory problems, word changing, and going blank when someone was talking to me. I had a full nuro workup and the MD with tears in eys stated I had Alzheimers. well of course I didn't beleive him and didn't go back. I am female and 45 yrs old. Symptoms get worse when I am tired or stressed. After a couple of years not working I finally tried going back to work. I did fine for a while then symptoms came back and became worse. I have talked to my MD and they dismiss it as stess, fibromyalgia ect. Some days are worse then others I can no longer work. I just wonder if the Md was right or is it just stess fibro. The MD make comments that I am to young for Alzhiemers but it dosen't look like it here.
One should question every diagnosis. Statin drug side effects (memory loss & muscle/joint pain) can be diagnosed as various diseases. More info: http://www.businessweek.com/magazine/content/08_04/b4068052092994.htm?chan=search
Just received my Dx. yesterday, feeling lost and afraid. Have not told my grown children or other family members... I am 58 yrs. old, have been widowed for 6 yrs., have a cute country home in N. Texas, work part time, and wondering how I will avoid the things that will be changing the quality of my everyday life.. I thank God for my strength and hope that I can keep that spirit intact for most of this journey. Feeling very frightened today... God luck and God Bless to us all...
My loved one was diagnosed with EOAD before Christmas 2007, although I believe symptoms were evident prior to that time. She is now 61 years old. In addition to the many short term memory lapses, some symptoms include inability to play simple children's games (go fish, uno), agitation/depression, trouble remembering to eat items in front of her and trouble taking medication properly. She can still take care of hygiene and carry on a fairly normal conversation. Based on what I have read, I suspect she is somewhere between stages 3and 4 of Alzheimer's. My question is - does anyone have an idea of how much time we have before she enters the stages of not being able to care of herself / incontinence, etc? I am trying to think about long term planning and this info. would be most helpful. Any input is appreciated.
My husband's uncle was diagnosed 2 years ago. Well, sort of diagnosed. It is so correct that doctors do not like to diagnose EOAD....they just call it unspecified dementia. He is 60, will be 61 in August. His girlfriend of 2 years, same age, called us recently and said she can't "do this" anymore. We are so upset. We can't take him in, as I am disabled and my husband works full time. There is no one to care for him, and we have no idea what to do. He is advanced enough that he can not live alone, but not so much as to be a candidate for a nursing home. Is there anything out there for this type of situation? He lost his job and has a very small pension, no savings and a rental property he has to sell so he can pay off debt. SSDI has denied him and the appeal is taking forever. What do we do? Where can he go? He is 1500 miles away from us and he doesn't want to come back to his hometown. Does anyone know of an assisted living type of place where he can be covered by social services? Anywhere? We are at our wits end. Any help/advice would be so much appreciated. Thank you. Margaret
Maybe, just maybe there is a little help for "normal" alzheimer's but you all must know EOAD is very very different. Thank you Charlene for sharing your story. FINALLY I don't feel like the only one. My husband was diagnosed Oct of '07. He first went thru a bad week then leveled off for a few weeks, then came another drop for a week followed by another leveling off. For the past 4-6 weeks hes stayed in his progression and it's coming on FAST. Neither Aricept nor Namenda helped at all. He has now begun a very fast progression with Parkinson's, a common "side affect" of EOAD. At first the doctors said 4-5 years but each time I speak with the doctor he shortens his expectations (now we are down to approx. 9-12 months. My husband is just WAY ahead of the "normal schedule". Every case is a bit different obviously but I have found it incredibly difficult to find ANY info on Early Onset. In the 3 stage method he has completed stage 2 and just begun symptoms of stage 3. I now know generally WHAT to expect but I still have no idea WHEN. Any further info on when he may become immobile from either the EOAD or the Parkinson's would be greatly appreciated.
My husband was diagnosed with EOAD at age 55. I have read everything online about it. That is not what I wanted to comment on though. Has anyone else read "Still Alice". It is a fiction novel, but it is so on the money for my husband. I wanted him to read it because he says that no one understands what it is like. You can get a real good idea of what they are feeling by this book. I may be behind and everyone already knows of it. jm29
Sorry to not post anything for a couple of weeks but I finally left the house and went to see my Grand daughters. Ken you said #2 was your questions "keep her happy". I have a couple of questions? Do she still talk and respond to music and the TV? I know that sounds simple but we never ever let the house go quite. We kept musice on that she enjoyed over the years. We put on the TV on shows she watched. She was very active politically and liked Fox News. We also made eating and drinking easy for her. We got rid of the glass and cups and went to a plastic drink bootle. We found the best way to feed her was with baby spoons and bottles used by resturants that squirt ketchup. You can find them at any kitchen store. Also, put her in depends sooner than later. It will make your and her life a lot easier in the long run. Dress her in loose fitting clothes like sweat pants and large tee shirts that are easy to get on and off. But a rasied seat for the bath room so it is easy to sit her down and it will not strain her. Do not try and put shoes on her keep in in socks. Take up all throw rugs so she does not fall. I am running out of space let me know if this helps.
Debbie, I know how frustrated you are. I lived many years just getting worse & complaining to my doctors. I had breast CA in 1999 and we thought it was from the chemo, even though I had the problems before then. I was diagnosed with Fibromyalgia which has memory confusions. Then came serious problems with my job... Not meeting goals and deadlines. Doctors always said it was stress, but when I forgot to get on an airplane for a mandatory budget meeting...I totally lost it. I did not even remember a meeting. After that I was put on a "Performance Evaluation Warning". Basically, they would have the paperwork in place to dismiss me. Debbie, Please Find a doctor that listens. Even though it took so long for the doctors to officially diagnosis and put me on Aricept and Risperdal, they cared about me & always listened. I have female doctors. Doctors never want to label you with that diagnosis. I am a textbook early onset case. Over the years I had extremely stressful jobs. I was a very successful professional woman. I am now 56 and on medical disability for 6 months,& will then file for Social Security. I am scared also and looking for others to talk and share. I will tell you, there is no place I have found that is for the early onset "PATIENT". Most are for the caregivers. And God Bless them they need it after the early stages. FACE YOUR FEAR! Go back to the doctor. Find one specializing in Alzheimers. Reach out. Your fear is the unknown. I would
I am interested in the best places for information. I have not been to a doctor but I feel this is what is going on with me. I can't remember peoples names that I have known for years, I get lost, get very confused, have to keep notes for everything, I can't spell well anymore...
I am affraid to go to the Dr. because I am affraid of the diagnoses. I am 42 and this has been going on for over a year. The Dr. told me last year that it was just stress but the stress has gone away and the memory has gotten worse. I have been looking into long term care insurance because I am married and have two young children. If anyone has any knowledge that would help me I would be so grateful.
Nosnarfu9 - I'm all ears. My wife was diagnosed at 51 easily 2-1/2 years after I knew that was the problem. You are right, there is no help out there. My son and I are doing everything we can to keep her 1) safe and 2) happy. #2 is the problem. Am open to suggestions.
Thx - Ken J
My wife died from early on set on December 8, 2007. There is no help out there for us. My son helped me take care of my wife for the last five years and he went to several meeting. My wife was only 50 when she was diganossed with ealz. We did some many things that no one else thought of. The Hospic said that they have never seen two men take care of a women like we did. I am very proud of what we did. Do not look for help for anyone for early AL. It is not there. I will try and help you with things I used to make my wifes life better as she died.
There are a lot of things you can do to make your life and their's easier.
Oh my goodness, I in no way meant to come across as angry about the blog content. I am thrilled that there are places to discuss, share, vent, cry out for help for the caregiver. I know it must be incredibly painful. I am hurting to know that I at some point will be a source of pain. I doubt that I will know or care when that time comes. I don't know if I will or not. I have been told to go to an elder attorney, get my will updated and make my personal choices about end of like care etc. But, here it is. I am frustrated that NOWHERE, and believe me I have looked, have I found "my" special community to belong to. Why is this? Because, I think my people are embarrassed about their diagnosis. They don't want others to know they have this problem. The local Alzheimer's Assn (San Antonio, Tx) has an early onset support group for pts. once a month. I called and was told 1 man came last month, didn't know if he would be back but they would be happy to call him to see. I did go to a another group they suggested. There were 3 wonderful people there. 2 older caregivers whose spouses were deceased (they were like the lay facilitors from the church that sponsors the group and the volunteer therapist facilitor. In time, I hope my family will participate and reap the rewards of a group like this. But, where is my support group for now? I guess I am going to have to start it. I am not the normal face of Alzheimer's yet. I need someone I can relate to now. Thanks guys. Can anyone
Lynn - Your diagnosis is a travesty, as are all. Your anger toward the content of this blog surprises me though. These are folks who are caregivers and in need of any kind of support and ideas they can get. Like raising children, we're kind of flying by the seat of our pants and it isn't alot of fun for us. I don't believe any of the dialogue is intended to be demeaning or suggest "giving up".
By your writing, it appears you are still in sound condition. I might suggest the
following for support that might be a better fit. It is the Dimentia Advocacy and Support Network International.
HI Lynn, I just want to say that I am so sorry about your diganosis. I myself wish I would have talked to my Dad about what was happening to him. I wish I knew more how he was feeling. I wish I would have started learning all about this disease as soon as my Dad was diagnosed so that I could have shared all his changes that he has gone through. My only suggestion to you Lynn is that you need to talk to your family, your children. Tell them how you feel and what your feeling. Tell them to please research this disease so they no better as to what changes you will eventually be going through. I regret not learning about all this earlier. I just assumed what I saw in the movies was really how alzheimer was. ( I was so wrong ) anyway Lynn good luck with everything and be strong. Just keep your family in YOUR loop. I know my comment wasn't the best but from what I have been reading there are so many loving and caring people out there that are and willing to share. keep your chin up :)
How sad this is. I am 56 & "finally" diagnosed with EOAD. I am looking for positive affirmations and direction on how to deal with this self-esteem robbing disease and all I have found here is info from wonderful loving caregivers about diapers and how sad they feel to see their loved ones so empty. Please, share with me some things to help me live as fully as I can. In 45 days I have gone from diagnosis to disability. I no longer am working at my stressful dntal practice OM job, but I have answers why I was having so many problems. I was on the verge of losing my job for performance & goal related issues. I was failing the 18 people that I managed as well as the patients. I almost lost my marriage last summer, I had divorced myself from my friends and family, so all I can say is Thank God! At least I know and have the time to emjoy what I have left. This forum has left me angry & feeling why bother. There will be a bad ending & I am going to be a financial an
Hi, My Dad was diagnosed with EOAD 3 years ago. When my Dad and Step Mom told me I just thought, ok, my dad is just going to live and grow old and maybe not rememeber be someday and the life that he had but that he would still look like my dad, still act like my dad but I was so wrong. It has only been 3 years and my Dad can no longer do anything for himself. 3 years ago he was a strong man who weighed 240 pounds and now weighs 104. He doesn't look like my dad, there is nothing. I can see my Dad in his eyes and that is the only thing left of my Dad. I am so upset at myself for being so stupid. I should have read and learned more about EOAD as to know exactly what was going to happen to my Dad so that I could have spent more precious time with him. My step Mom is so wonderful, she loves my Dad so much and will continue to take care of him until she can physically no longer do it. I just can't believe this has happend. I am heart broken.
EOAD can consume you, or you can chosse to make the best of the time that you have left. My wife was diagnosed 7 years ago, at age 53. She and I immediately updated our wills, and had POAs and health care directives drafted. She responded well to Aricept initially, and as a result, we had 5 pretty good years together. Ironically, as a result of by-pass surgery, I was able to take some time away from work, which gave us more time to do some travel while we still could. My wife's response when she heard the diagnosis? "Well, at least I don't have cancer; we have some time!" She was a courageous woman, and determined that we would not be robbed of one single moment unnecessarily. She is still at home with me, although now at the stage where she speaks no more than a couple of words at a time, and needs help with virtually eveything. But she seems happy and content, which is all that I can hope for at this stage.
I find it comforting to care for my mother. She is such a kind and giving indivual at times. We never know "what's around the corner," for any of us. What helps me is to see your comments and knowing I am not the only one in the world doing this. And, also knowing that there will be a time coming soon when no resident of this earth will say, "I am sick."
Wow! I have known something was wrong with my husband for about a year - yesterday we got the official news from the pet scans, psycho-testing, etc. I already knew the diagnosis - as I helped with his Mom whom I love dearly. Trying to get him to go for help has been difficult and yesterday was the worst yet!
Our daughter is about to turn 16 and our son is 13. I have to believe at this point that things will be okay. He surprises me with his calmness. I would be emoting like Mt. Vesuvius. My prayers are with you all... I am trying to remember Jonathan Larsen the talented playwright and genius composer of "Rent" and my friends only sibling. He died at 36 the night before his show opened on Broadway from a cardiac anorism - "No day but, today" .. is wringing in my ears. My husbands first and primary thought as we drove away from the doctor's office was "what am I going to do with the rest of my life?" We need to ask ourselves that question each morni
My wife came dowm with EOAD at 48. She died on December 8th, 2007. My son and I took care of her, at home until the day she died. Please do not be mad it will not help. We were very proud to be able to take care of her at home. There is not much help out there for early on set patients or there care givers. You have to make sure you take care of all your legal documents before he/she cannot. Make sure you get a POA, and a living will as a minimum. Without those two documents you will have major problems. Do not wait too long before you put your loved one in dependes. I did and it made my life much more diffucult than it had to be. Get into Hospice care as soon as his/her health dictates. They can help more than you care ever know until you use them. I have not came to terms with my wife of 40 years death yet. But I know she was better off at home with me and my son than she would have been any where else. Stay Strong. God Bless
I agree with most of the others who have posted a comment - the statement that there is life after diagonosis is nonsense. My husband was diagnosed with EOAD at age 58. He is now 65 and needs 24/7 care. He can no longer speak more than 3 words, is totally incontinent, he can no longer bathe himself, shave, dress himself or feed himself. 6 years ago when my husband was disgnosed with EOAD, we were so hopeful that a cure was on the horizon. All hope is now gone. AD is still an incurable, mind robbing disease.
I am watching my husband rapidly fade away. The future terrifies me. We are isolated and facing financial ruin.
I'm recently diagnosed with EOAD, and speaking for myself, there is no peace of mind in knowing that. I had no idea anything was wrong, until I got fired from my management job. After a psychologist suspected something was wrong, I had neuropsych testing and found that some areas of my functioning had already fallen to extremely low ranges. I'm going to die in a nursing home, a mindless entity wearing diapers. Still looking for the peace in that.
The compound resveratrol has shown interesting neuroprotective properties in clinical trials. Drs. Anderson and Setia reported in a January paper that of 121 with memory loss and early Alzheimers symptoms patients given biotivia Transmax, an extract of red wine used by researchers, 94 showed marked improvement in cholesterol levels, reduced inflammation and improved circulation. Resveratrol works by activating the human Sirt 1,2,3 genes much like caloric restriction does. Sirtris pharma is developing a synthetic version of transmax which it intends to have on the market in five years. In another study by Dr. Sinclair of Harvard published in the journal Nature in November transmax was shown to increase the life span of obese mammals by 31%. This is an exciting area of research and could lead to some revolutionary new preventative strategies and safer less invasive treatments for heart disease. I Dr. Sinclair's study of obese mice he found that those fed resveratrol lived 31% longer and
I am a person who has been living with and challenged by probable early onset Alzheimer's for 18 years, starting at the age of 41. Thankfully through the help of our wonderful neueologist, I have achieved a higher quality of life! I have a hereditary form - along with my older sister- our mother and aunt also had it. He has taught us to look "outside the box" with a whole mind and body approach. Along with the medications (which are an "older" type, because I started before the typical AD drugs were available)we us an integrative approach with nutrition, exercise, and supplements. We avoid any MSG, sugar substitutes, toxins, and add in eggs, protein, nuts, fish, fruits and vegtables. And it is working! I have written a book (www.alzheimersaverted.com) and we have formed a national organization, forMemory:Building Hope in Early Onset Alzheimer's and Related Disease (www.forMemory.org) Feel free to contact us. We do this with support of our doctors and researchers. Wi
My wife presented at age 52, 5 years before the 12th doctor gave us the EOAD diagnosis. Help? What's that? The drugs are near useless, friends and relatives have all but vanished, financial challenges have turned into the good old days and still somehow the caregiver and victim must carry on. The only peace of mind is knowing that yesterday is gone and tomorrow will likely be worse than today. I look into my wife's beautiful blue eyes that danced with joy and see the frustration of trying to dress herself, trying speak a three word sentence clearly, trying to read a child's book, or simply feeding herself without making a mess. Her biggest fear? She's afraid that I will get tired doing so much for her. I keep saying that I never give up on her no matter what. I read every article like this hoping for news of a possible breakthrough. It's just more of the same. Tell us about new drugs that the FDA won't take a decade to approve. It's a fatal disease and it's time to stop it.
My wife has EOAD and the drugs did a lot less for her then the older folks and her progression was very fast. She hasn't been able to talk for over two years and is in excellent health otherwise. started at age 58 and now 65 with no life quality.
Most diagnosed with EOAD (now also called Younger Onset Alzheimer’s) have a parent who also had EOAD. They have been living in fear of one day having the diagnosis. The diagnosis is confirmation of their worst fear.
What is so helpful about that? Life after a diagnosis? What life? What peace of mind? Peace of mind in knowing that you have an incurable disease? The title of your article makes it sound like there are some new findings or something like that. There is no more help for an early onset than if you were diagnosed at a later age. I don't get it.
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