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• May 11, 2009 11:47 a.m.

  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?

  - marge

• April 18, 2009 1:26 a.m.

  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.

  - Lindsey

• March 28, 2009 7:26 a.m.

  Kevin, 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.

  - Beth

• March 1, 2009 11:24 a.m.

  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?

  - Kevin

• February 24, 2009 4:58 p.m.

  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.

  - Evelyn

• February 22, 2009 9:11 p.m.

  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?

  - Janet

• February 20, 2009 8:10 a.m.

  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?

  - jbb

• February 2, 2009 2:58 p.m.

  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?

  - Rene

• January 31, 2009 10:28 a.m.

  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.

  - gammij

• January 23, 2009 4:39 p.m.

  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.

  - Carla

• January 20, 2009 6:33 a.m.

  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?

  - sw

• January 13, 2009 10:35 p.m.

  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.

  - Nosnarfu9

• December 31, 2008 10:46 p.m.

  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?

  - Giovanni

• December 26, 2008 4:21 p.m.

  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?

  - Jodi

• August 31, 2008 12:21 a.m.

  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.

  - Shmoo

• August 30, 2008 1:13 p.m.

  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.

  - Joan Kelley

• August 28, 2008 12:43 p.m.

  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?

  - beth

• 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