I would really like to know what symptoms all of you that have been diagnosed with EOAD (or YOAD) saw at the beginning? I am waiting for an appointment for my husband but somedays I am sure nothing is wrong with him while other days I KNOW there is! Please let me know what was going on at the beginning.

Hi I am Sharon, I have EOAD, I was told this April 2008 I was 57. I started noticing things, such as getting lost coming home from work. I couldn't remember how to get to my daughters house. I couldn't remember from one day to the next what to do at my job. I kept thinking it was stress. But, one day I was leaving for work and I came inside the house and told my husband something was wrong, to make a long story short at first the Dr. said I had a stroke. I was then sent to a Neurologist who did an MRI and said I had a compressed spinal cord cormpression. So, I had surgery for that. I kept telling him I couldn't remember things, my memory was getting bad, so he had all the test you can think of, then all the test for memory. He said I had EOAD, and I was put on two different ALZ meds, I applied for SS disability and of course they sent me to their DR. I had five to six hours of testing. I was given my SS disability my first go around. I have lost my math skills, my spelling is bad, my handwriting has changed, my short term memory is really bad. I laugh and say it's a good thing I don't lie. It's been a long road and it's going to get worse, I am seeing a Psychologist that deals with ALZ patients, I can say it has helped deal with this at my age. I am sorry for what you are going throuh, there are a lot of people here that help me so much and I am sure they will help you.

Sharon

quote:

Originally posted by S. H.:
Hi I am Sharon, I have EOAD, I was told this April 2008 I was 57. I started noticing things, such as getting lost coming home from work. I couldn't remember how to get to my daughters house. I couldn't remember from one day to the next what to do at my job. I kept thinking it was stress. But, one day I was leaving for work and I came inside the house and told my husband something was wrong, to make a long story short at first the Dr. said I had a stroke. I was then sent to a Neurologist who did an MRI and said I had a compressed spinal cord cormpression. So, I had surgery for that. I kept telling him I couldn't remember things, my memory was getting bad, so he had all the test you can think of, then all the test for memory. He said I had EOAD, and I was put on two different ALZ meds, I applied for SS disability and of course they sent me to their DR. I had five to six hours of testing. I was given my SS disability my first go around. I have lost my math skills, my spelling is bad, my handwriting has changed, my short term memory is really bad. I laugh and say it's a good thing I don't lie. It's been a long road and it's going to get worse, I am seeing a Psychologist that deals with ALZ patients, I can say it has helped deal with this at my age. I am sorry for what you are going throuh, there are a lot of people here that help me so much and I am sure they will help you.

Sharon

Thanks Sharon. I am so sorry that you are going through this. I was trying to get justification for making the appointment for my husband. I just got it today and he will go in this month for testing. I guess we'll know sometime in the next month or so what's going on. Some days I think he's fine and other days it's really bad. Thanks for replying. I appreciate it and hope you stay strong.
Dawn

Scared to Death, are you? That's because you're in the worst part, the unknown. Many of us with the disease don't get a solid diagnosis, as so few of us are a textbook example.

I think it's important to have a name to call what we have, even if it's just the best guess. Like, I say that I have early onset Alzheimer's, frontal variety. I use that label because I think it's the bucket that best holds my symptoms. I seem to have a version of sundowning too, not every day, but when I'm more active it's a problem.

We all have good days and bad days. His brain is more fragile now, so you may find that what he eats affects his mind, and sleep may become a problem.

It's a whole new world. You've done good by joining this community, some of the best dementia experience in the world is right here.

Questions?

Dear drevere,
Hello and welcome to the AD Message Boards.

As Alan said, you are in the worst part, the unknown. The unknown is scarier that anything else you two will face.
Diagnosis is a bear! It took me 6 months and eight doctors to figure out that I had EOAD @ 53!! First, I thought it was STRESS!!!

Mr earliest symptoms were job related. I kept asking the same questions over and over. My co-workers became alarmed. I was no longer able to multitask (that became a nightmare). I was written up for poor job performance. Me! Not me! I was always top of my class, top of everything!
My boyfriend kept telling me we had conversations that I totally forgot. Then I got lost going to the library (scared me to death).
The final diagnosis came from the neuropsychological testing. I had had 2 lumbar punctures, mri's, labs, eegs and other tests which were not conclusive. In the past I had suffered 2 head injuries with concussions. The doctors thought that played a part of all this.

Well, I've rattled on enough. How can I help?

Please, come here as often as you want to. Vent your feelings, get information, and get a lot of support.

We're here for you. You and your Hubby are NOT alone.

Good luck with his appointments.

Please, let us know how you are doing.

Drevere:
I was put on probation after being chief of pediatrics at my HMO. I was never told a specific reason, only that patients and nurses were complaining about me. Later I had blank spells when my memory disappeared completely, and i couldn't carry on a converstion because I couldn't keep my train of thought.

I don't have EOAD, I have what is called neuro-psychiatric lupus. I think I'll use that term until a better one comes along because it's too complicated to say lupus and a cognitive deficit. I was treated for depression/anxiety for several years and then diagnosed as lupus. Now, I have trouble remembering what I read, I can't handle my finances, and I have short term memory loss. I have had other neurologic symptoms in the past. I have been on Exelon patch, a medication like Aricept, for 1 month with some improvement.

Welcome to these boards. Can you tell us more about your husband's story? How old is he, what symptoms is he having, what evaluation he has had? Can he use the computer? When he is ready, we would love to meet him.

Iris L.

quote:

Originally posted by Iris L.:
Drevere:
I was put on probation after being chief of pediatrics at my HMO. I was never told a specific reason, only that patients and nurses were complaining about me. Later I had blank spells when my memory disappeared completely, and i couldn't carry on a converstion because I couldn't keep my train of thought.

I don't have EOAD, I have what is called neuro-psychiatric lupus. I think I'll use that term until a better one comes along because it's too complicated to say lupus and a cognitive deficit. I was treated for depression/anxiety for several years and then diagnosed as lupus. Now, I have trouble remembering what I read, I can't handle my finances, and I have short term memory loss. I have had other neurologic symptoms in the past. I have been on Exelon patch, a medication like Aricept, for 1 month with some improvement.

Welcome to these boards. Can you tell us more about your husband's story? How old is he, what symptoms is he having, what evaluation he has had? Can he use the computer? When he is ready, we would love to meet him.

Iris L.

Thanks for the replies. It still all seems unreal that I am really thinking that my husband may have alzheimer's. His mother and grandmother both had it but late onset. My husband is 55. What I am seeing and why I am taking him for evaluation(keep in mind, these are not every day occurances but happen somewhat frequently and when they do, usually happens for several days before he "snaps" out of it.):
Didn't know how to sign our taxes and the preparer had to highlight where he had to sign because there were 2 signature lines (one for him, one for me)
Driving poorly - running (or almost running) red lights, stopping at green ones. Nearly stopping on the freeway because he didn't know where to go (it was an unfamiliar city but still, you don't stop on the freeway! We had a semi truck honking at us!) He got that "Deer in the headlight look" one time when he had to take a different route home and didn't know how to get there (within our own neighborhood)
He has started getting up at odd hours, dress and get ready for work. 11:30 pm, then 9:30 pm, and once, he never even went to bed but got dressed for work. He is very strange during these times, it takes me forever to get him to bed and sometimes, he wanders around the house instead of getting back in bed.
Conversations are difficult sometimes. He'll start a sentence and then not finish it. He is hard to talk to sometimes. He clears his throat a lot while talking.
He didn't know how to use a phone. Didn't know my date of birth. Etc., ETc., Etc.,

Anyhoo, these are just some of the things that have been happening. It just seems like if he had Alzheimer's these things would happen every day. Since I don't know anyone with EOAD I am not sure. I guess we'll know sometime soon. His appt is for the 16th. Thank you all for your replies.
Dawn

Dawn,

How does your husband sleep? Does he snore badly? Have you ever stayed up and watched him sleep?

The come and go of the symptoms could also be sleep apnea. The bad days would be after a bad night's sleep.

I have sleep apnea. My wife can predict my worst days by how I sleep resulting in her sleeping poorly. Mine is centrally caused. A brain stem injury is most likely the cause.

Most have obstructive sleep apnea. They stop or slow their breathing due to difficulty getting the air through the air passageways. There are lots of treatments for OSA (Obstructive Sleep Apnea). Not much for CSA except an implanted diaphragm stimulator.

This idea is worth serious consideration since it is very treatable. Rule it out before accepting a more serious diagnosis like AD or MCI.

My father had OSA/CSA for over thirty years. It eventually left him with a diagnosis of AD with Parkinson's. We will never know what the true cause of his decline was.

Mark makes an excellent point. There are a few things that can cause your husband's symptoms, many of them treatable.

But the important thing, Dawn, is that your husband is in trouble. You've described some fairly advanced symptoms, but they shouldn't come and go like you describe. I'm hopeful that it will turn out to be treatable.

If he's a threat in traffic, you might want to plan around him not having to drive till you see the doctor. That freeway event, in the wrong circumstances, could get you killed.

Hi Drevere, my name is Tom and I have Early Onset Alzheimer's related dementia. I was diagnosed in June of 2008 after more than two years of professioinal evaluation. I was 58 then.
To begin this recflection of my journey I want to explain that all cases of dementia are different. We all have good days and we all have bad ones to! It seems like my level of being tired effects my personal bad days. Things go badly when I'm not at the top of my game. My personal early signs included; 1) poor jugdement on money issues 2)forgetting how tio get to new places that I had previously been to 3) unusual and unjustified behavior.

best of luck on your journey..

Dawn,

I would seriously work at stopping your husband from driving. I had a few close calls back in 2001. When my wife finally was with me during a close call, I gave up driving. I've been riding shotgun for almost eight years now. Too bad I am no good at driving directions. If she asks me which way to turn, I almost always say the opposite of what I mean. I still know San Jose, CA like the back of my hand. I lived in Idaho for six months before my rapid decline in memory and could never learn the roads here. I had memorized them but lost it all within a few months.

The last thing someone with dementia needs is bad memories to get stuck on. My father would become paranoid when his bad memories came to mind. And those memories are like nosy neighbors, they pop-up at the worst time.

My best to you as you get him into the diagnostic system.

My son and I just had a talk with my husband, told him we were very concerned about him and the things he's been doing lately. I told him I made an appointment at the Banner Alzheimer's Institute. He was real quiet for a while but then his lip started to quiver a bit and said he's been having trouble at work (he's a surveyor) and probably shouldn't even be working any more. This really shocked us but also made us realize we are doing the right thing. He had trouble on Friday night knowing what day it was, he kept thinking it was Saturday morning and didn't understand why it was dark and why there wasn't a morning paper in the driveway. Couldn't put dishes away. At this point, the 17th (when his appointment is) can't come fast enough. Thanks for all your comments.

Dawn,

My heart goes out to you. He has done an incredible thing by confessing his struggles to you two.

Just keep giving him hugs. I know what was going through his mind when his lips were quivering. The same thing happened when I confessed to my wife and agreed that I should stop driving. It has happened many times since as I confess a different symptom to her.

You have no idea how hard this is for a man who has been providing for his family for so long.

Offer him any support he needs and explain that there is no judgment involved, just concern for his safely.

If you are in Glendale California, he should be able to get State Disability Insurance income easily. His doctor's office may have the forms. Some do. Otherwise, get them from the SDI office near the 101 and 110. They are also online at http://www.edd.ca.gov/Disabili...and_Publications.htm

When he sees that there are options available to him with SDI and SSDI, it should be a bit easier. He has already been through the hardest part in my opinion.

I have a doctor's appointment on the 17th too. This will be the first time I will see a doctor who will discuss my symptoms and prognosis. In the past, they all just dismissed me. One even told me to go to the Calif SDI office if I wanted any more help. Only the neuro-psychs acknowledged my struggles.

Have you observed any sleeping/breathing problems? Does he take naps often, like when he gets home from work? Any apnea he may have is treatable.

You want to have as much ready for the doctors visit as possible. Start making a journal about his symptoms if you have not already. Write down questions for the doctor. You might consider having your son with you and your husband at the appointment.

You and your son need to understand as much if not more than your husband.

In the mean time, there are some ways you can help him. If he has to sign a form, especially one with lots of spaces on it, cover the rest of the page so he only has to focus on the part where he has to sign. It will be a big help.

You also might want to help him declutter or order his world. By this I mean help him understand where things are and will be for the long term. When he does not have his environment changing around him from day to day, it can reduce the confusion he feels.

For example, if my wife puts something on my desk or work bench, it can cause confusion. It is not as I left it and I can get easily overwhelmed trying to figure out what is different.

Help him establish routines for his day if he has not had routines already.

If you go out when he is home, try to let him know your schedule and stick to it or call him to let him know you will be late. These little bits of structure will help him feel safe, secure and aware of his surroundings.

Help him start to use lists and schedules. They were a great comfort to my father, even up to his last few weeks. When my mom knew we kids were going to visit, she would tell him and help him right down our names on a card to have as a prompt. Later, he would have a small bunch of cards with our names and the names of those who were visiting would be put out next to his chair.

Some of these ideas may sound premature but they are best started when he has the most function. Later, after he has lost function, he may not be able to adapt to the systems.

My father's decline came slowly over thirty years. He was able to hide many of his struggles by having these systems learned long before they were critical. His memory was in his shirt pocket in a stack of 3 x 5 note cards. We just though he was a nerd/engineer type. He fessed up many years later that he mind had been failing for a long time.

Our best to you and yours.

I am new to the group and need help finding my way around how to use the forum. I was first diagnoses with vascular dementia several years ago , then I got a second opinion and after being tested, I discovered it is mild cognitive impairment which is similar symtoms to dementia. My family and friends do not understand and I have little outside support. I have lost some of my friends.

My husband sometimes uses my deficits to confuse me.
The one thing I have going is that I see a counselor who understand dementia, and has been helpful to me in finding resources.

I need help from others in knowing how to cope with this illness all by myself. Since I am young, people dont really take it very seriously.

thanks
Loris

Hi Loris, I both welcome you to the group, I'm sure you'll find there's help here.

It's great that you have a counselor who gets you. Perhaps you could drag your husband there with you? Or at least, maybe your husband would like to come here online, ask what he wants? Tell him he's officially invited!!

How about going ahead, and post your top 3 or so questions?

Hi Dawn

My name is Mary. When I lived in California, I worked at Avery/Dennison. I was under the "marketing umbrella" within the Sales Promotion Dept. So, in this type of position you had to be on top of your game!

On August 29, 2008 I was told by my primary physician that I had early onset Alzheimer's. I noticed problems at work such as, no longer being able to create formulas in my excel program let alone know what the columns were for. I oversaw the running of three retail stores in WV, I had seven employees under me. I was the liason between the owner and the employees. When I could no longer read a memo and understand whawt I was reading I knew there was a problem. The worst of it was, I could not identify currency or count the denominations!

Get him to the Dr quickly. And don't let him drive. The 10 freeway in California is about as crazy as 95 is here in VA.

Take care of yourself first, get rest and see if at times your son can come over to sit with your husband, so you can get out of the house. YOU WILL NEED THE REST LATER DOWN THE ROAD!

Good luck to you
M

We got the prognosis we were afraid of, but had been hoping we wouldn't. My husband has been diagnosed with EOAD. He scored a 20 on his testing so is on the cusp of moderate stage-or, as the neurologist told us "He's seeing the sunset on the early stage." We are dealing with this the best we can. I had planned a trip with my mom to visit our son and grandbaby but now Jeff is also going. Our oldest son is really having a hard time with this. We all are, but with him being so far away it's really difficult. We'll just have to pray that the Aericept will do it's job and slow things down.

quote:

Originally posted by Advocation/Mary:
Hi Dawn

My name is Mary. When I lived in California, I worked at Avery/Dennison. I was under the "marketing umbrella" within the Sales Promotion Dept. So, in this type of position you had to be on top of your game!

On August 29, 2008 I was told by my primary physician that I had early onset Alzheimer's. I noticed problems at work such as, no longer being able to create formulas in my excel program let alone know what the columns were for. I oversaw the running of three retail stores in WV, I had seven employees under me. I was the liason between the owner and the employees. When I could no longer read a memo and understand whawt I was reading I knew there was a problem. The worst of it was, I could not identify currency or count the denominations!

Get him to the Dr quickly. And don't let him drive. The 10 freeway in California is about as crazy as 95 is here in VA.

Take care of yourself first, get rest and see if at times your son can come over to sit with your husband, so you can get out of the house. YOU WILL NEED THE REST LATER DOWN THE ROAD!

Good luck to you
M

I'm so sorry for what your husband faces, and those who care for him as well.

I remember just bits here & there of when I was diagnosed with dementia. What's more important to me is that nobody says, "Oh, you can't have dementia" for a long time now. Two or three years ago, even my doctors said that. Now, not so much. It's been at least a year since I passed for normal, I guess that's what I'm trying to say.

It's interesting, how we don't face just one thing. We face our level and all that goes with it, but before you know it we're at a lower level, and have to cope with that.

I'm early stage. Using the 7 stage thing the Alzheimer's Association uses, I'm Stage 4.

I encourage your husband to come online himself, and communicate with us. Or, if that's too much, he can pass questions through you. And of course, you can ask whatever you want, and can pass on queries from your son.

Hi, Loris, Welcome to these message boards. I see you have been a member for a while although you made your first post a few days ago. You say you were diagnosed as vascular dementia then mild cognitive impairment. It can be very upsetting when the professionals don't seem to be sure about you.

You said you are dealing with your illness alone. This is the place to be. Since you posted in the middle of a thread, it will help you to have your own thread. When you see the first page for this message board, Alzheimer's under age 65, click on the red "start a new discussion or poll". You will see "discussion", click on that. Label your post, then post away. Please let us know more about you, how old you are, are you still working, are you on any medications, your symptoms, how you are handling things, etc.

With a diagnosis of MCI, you can stay at the same level for the rest of your life or you might decline. Some people might return to a previous level of functioning. Some doctors might prescribe a memory drug to keep you from worsening. Perhaps others on this board can tell you their experience with MCI. Only time will tell how you fare.

You said your husband sometimes uses your deficits to confuse you. Loris, take this very seriously. Do you have adult children or someone close to you whom you trust who can help you? Please read the posts from Advocation/Mary. Do not let your husband see these boards until you are more sure about your situation.

You are in the right place. You will be safe and supported here as you go through your journey with your memory. Come back soon.

Iris L.

Imyers

Hi. Last August 2008, I was diagnosed at age 49 with EOAD. I am now 50! I resigned from my career the first part of January 2009.

I completely understand what you're going through.
I am currently going thru a divorce. My family starting noticing that my husband was "saying" and doing "strange" things. I kept a journal, of which I can look back upon. I understand completely what my family and friends saw!

I "hope" I'm not going to "die within a year!"
I could go back to my journal to confirm discussions that he and I had. He would either "act" as though he didn't hear my question(s) or quite simply, "ignore" me. He started hiding "important" documents, stating that he "had no idea what I had done with them." Finally, he tried to confuse me regarding my "Will", "Power of Atty" and "Medical, Power of Atty." I guess when I was conversing with my brother, red flags went up on his part.

You see, this is a second marriage for me. Luckily, I had the foresight to write our conversations down. I could reference my journal to make sure of our discussions or the lack thereof!

My husband was very accomodating, when others were around. He's a manager in his POE, so, he made all schedules. He was scheduling himself to work anywhere from 9am - 1045pm and up to 4 days a week! I had no physical interaction with anybody, except, when I had doctor appts.! My neurologist at the time, stated that I should no longer drive. (I had an (one) episode of complete confusion, not to mention, I didn't recognize a road of which I had driven for many years). My husband took that as gospel and took my keys. The lack of interaction with people in general, was a slow death for me. I was constantly "sundowning", I could never remember conversations and I sounded as though I was inebriated when I spoke. I was in a cocoon, living a slow death!

My daughters and friends complained to my brother and sister n law. I'm fortunate. They have "rescued" me from my marriage. Yes, I am currently going thru a divorce. But on the bright side, I sundown maybe half a dozen days of the "MONTH", I still can't count numbers, but, I'm more confident using a debit card. No, I will never be able to return to the job of which I loved (and was quite good at)! But on the upside of things. I continue to drive (limited). I've even been able to read a little bit. As long as I write down the buzz/character words, I can pretty much follow the gist of the text!

Hallejuah for family! See, I'm the lucky one. I am swimming, cooking, wow, my sister n law has even allowed me to redesign her home interiors! I've also started a small garden and have worked in the flower beds! Now that's a stress reducer!

Good luck to you. Start writing things down. Don't become paranoid, be patient and ask someone close to you that you trust if "things" appear as they should

M

Dear Drevere,

I'm so sorry you all received the dx your feared. But now, you can face it together!

There's a lot of great people on these message boards that can help you.

We're here. You are not alone.

How can we help???

Please, come back and let us know how you all are doing!

I am a caregiver to MIL with ALZ. She began having symptoms as early as age 65 (and maybe earlier). I am a firm believer in Aricept and Namenda (sp?). She is 80 years old now and stays in an apt adjacent to our home. We monitor overnights with a baby video monitor. Your postings are giving me tremendous insights and I hope I can assist you in some small way too. She is officially "stage 6" and we take one day at a time. Keep posting and eat lots of veggies & fruits. Research continues to affirm these mind-helping foods. Take care.

Dear kats,

Hello and Welcome to the AD Message Boards. I'm sorry to hear about your MIL but I am glad you've found us.

You may want to post in the caregivers forum. You'll probably get a lot more input there.

Hang on. You're doing a great job.

Have you contacted your local AD Assn yet? To find it, please go to the bottom of this page and click on "Chapters" and follow the directions.

Good Luck and keep us posted.

Thanks for sharing.