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• Housecall
• Alzheimer's caregiving
• Living with cancer

• August 24, 2008 6:36 p.m.

  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.

  - Liz

• August 24, 2008 4:41 p.m.

  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.

  - Sharon

• August 13, 2008 10:44 a.m.

  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!

  - lorene knowles

• August 2, 2008 1:04 a.m.

  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?

  - TammyG

• July 18, 2008 10:11 a.m.

  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.

  - JB

• July 3, 2008 9:00 p.m.

  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

  - Virginia

• July 2, 2008 9:08 a.m.

  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!

  - Magali

• June 20, 2008 9:52 p.m.

  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.

  - Terry

• June 9, 2008 10:37 p.m.

  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

  - Colby

• May 28, 2008 9:48 a.m.

  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...

  - Barbara

• May 23, 2008 6:47 p.m.

  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.

  - Beth

• May 22, 2008 2:43 a.m.

  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

  - Margaret

• May 20, 2008 11:26 p.m.

  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.

  - LorraLi

• May 14, 2008 9:54 a.m.

  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

  - jm29

• April 29, 2008 8:26 p.m.

  For Kenj, 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. NosnarfU9

  - Nosnarfu9

• April 22, 2008 12:04 p.m.

  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

  - Lynn

• April 17, 2008 9:07 a.m.

  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. Debbie

  - Debbie

• April 6, 2008 7:06 p.m.

  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

  - Ken J

• April 5, 2008 9:46 p.m.

  Hi All, 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. Nosnarfu9

  - Nosnarfu9

• March 31, 2008 7:27 p.m.

  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

• March 30, 2008 12:01 p.m.

  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. dasninternational.org

  - Ken J

• March 21, 2008 6:08 p.m.

  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 :)

  - Charlene Milligan

• March 19, 2008 10:55 a.m.

  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

  - Lynn

• March 13, 2008 11:26 a.m.

  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.

  - Charlene Milligan

• February 27, 2008 1:06 a.m.

  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.

  - Tom