Hi to All,

I do have Alzheimer's disease. I have what is called Early or Young Onset Alzheimer's Disease. I was diagnosed @ 53. I am now 55 and still hanging in there.

How about you??

Hi,

Do you have Alzheimer's?

If you do, please share your story.

If you are a caregiver, please share your story.


Thanks.

quote:

Originally posted by Lisa 428:
Hi,

Do you have Alzheimer's?

If you do, please share your story.

If you are a caregiver, please share your story.


Thanks.

I'm not sure that I'm writing to the right place, but I'm 63 and I've just been diagnosed with early onset Alzheimers. Please write back and let me know if I'm responding to the right place.

Dear CGV,

Hello and Welcome to the AD Message Boards. Yes, you have come to the right place. However, you may want to post on the "Alzheimer's Under 65" forum too.

My name is Lisa. I am 55 dx @ 53 with EOAD/YOAD. I am my own caregiver as well as a caregiver to my Mom who is 78 and had AD.

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

Please, tell us more about yourself and your situation.

My Mom was diagnosed around age 58. Dad noticed issues and had her diagnosed at Mayo Clinic. What I'w wondering about is when and what did Mom notice first. She didn't talk about it when she still could and now she isn't able. Do you mind sharing with me how she might have felt based on your experience? I understand if you choose not to.

Thanks. Mary

Hi Mary O,

I'll be happy to share some of my story with you. My troubles started at work. I returned to work after having had surgery and it was like a had forgotten how to do my job. I started asking a lot of questions and forgetting the answers. Multi-tasking became impossible. I got written up at work and everything. It was awful. As for my personal life, my boyfriend would tell me that we had already talked about certain things and I didn't remember conversations. I kept repeating myself at work and at home. Then, one day while driving to the library I got lost! Totally confused. Felt like I drove into the twilight zone! It was pretty scary! Later, I had trouble remembering to pay bills or I would pay them twice.


I hope this helps with some of your questions. Please, come back and tell me more about you situation.

Hi Lisa 428. I am a caregiver for my wife aged 59. She had a similar experience to you. She was a teacher, had an operation in 2004, aged 54, diagnosed with AD two years later after becoming forgetful and not being to cope with here job. It is just heart breaking the way all future plans go out the window. I got her medical records sent to me yesterday, and I wasn't surprised to see that she was given Isoflurane during her operation.

For me, it was an interesting time, when I became symptomatic but was not aware that I had a problem. For instance, I complained every time I went to a staff meeting or a training, that it was a waste of time, didn't learn anything, and wow was the meeting/training disorganized.

And the headaches! When I would try to think through something, I would get these incredible headaches.

I got angry and angrier, a lot I thought because of how unorganized everyone was, and how poorly they communicated. I got department reports from my immediate superior, that I didn't recognize, and would put to the side of my desk in a big pile to look at later.

Without a warning, out of the blue as far as I knew, I was fired. But I still didn't see any problem with me, until months later I found a job that was a big step backward for me. But I couldn't do it! And the paperwork, gosh how I complained about the paperwork being disorganized and useless and on and on.

I made a neurologist appointment, with the cover story of my peripheral neuropathy, but when I got there I bombarded him with questions about what could be happening to me. He connected me with a neuropsychological examiner, I got tested, and the guy said I had a "neuro-cognitive disorder, moderate." Several parts of my neuropsych were devastating, on a scale of 0 to 100 I scored in places in the teens, and one or two I scored in single digits. Strangely enough, my vocabulary was untouched, and some other things that the doc said let me fake normal for a while, no way to know how long.

Like Lisa said, the first time or two you get lost, is incredibly confusing. Once you know you have problems, you can try to compensate.

I have no problem with bills. But don't ask my wife about that. She controls the household money, and only doles out a little cash to me as needed.

What's all this make you think, Mary O?

"Strangely enough, my vocabulary was untouched, and some other things that the doc said let me fake normal for a while, no way to know how long. "

I'm sick and tired of hearing that dementia patients "fake" being normal! We all know that memory resides in several different areas of the brain, so when people appear "normal", it's because they are using the relatively undamaged part of their brain. At other times the damaged part is working. Probably a better way to phrase that might be to say that some dementia patients can "compensate" for a long period of time. The other way makes it seem as if the memory problems are volitional. Don't the dementia patients have enough trouble without the people around them being told by doctors that they can turn their cognition off and on? This hits a sore spot with me because it was intimated several times over the course of many years about me that I was faking or had an ulterior motive for having to lose my career, my marriage, my new home, and my financial assets.

Iris L.

Thanks for sharing your personal stories. Iris I agree with you on the conpensating. I saw Mom doing it.

It is difficult to sort out what is just the normal aging process or maybe stress induced. I've heard the saying so often - if you can't remember where you put your keys it is aging - if you can't remember what keys are for it is AD. What a simplified - in my mind - stupid thing to tell people who are wondering if they might be headed down this terrible path.

I quit working a few years ago - my choice - to start a company with my sisters (at no salary) to raise awareness about AD in honor of Mom. Maybe also to keep me too busy to worry about who in the family is next as we have 7 so far. Now I find that more complex financial documents are like Greek. Is it because I have gotten out of that world? It isn't necessarily like riding a bike right? Sometimes I can't find the right word to use - even for common things. I sometimes feel overwhelmed by the thought of organizing my house - but then again it is pretty messy right now. lol Maybe it is all just because I'm tired.

I too suffer from headaches Alan but have since I was in my early teens. The level of concentration it must take to get through life with early AD would certainly give one a headache.

Mary

Mary O

I too am a Mary. I was diagnosed w/EOAD at age 49 and am now currently 05. I had the same problems as Iris, Alan & Lisa. I had two surgeries (rotator cuff 2006/07) within 8 mths apart. After returning to work, I had noticed problems with understanding memos and retaining information. I personally thought I was just "tired" from overwork.

After I s/w my gyno I told him my concerns, I also asked him if it was from the replacement hormones that I had been on for several years (had hysto age 32). He assured me that there should be no side effects and stated that I "was overworked and needed a vacation!" So, I made an appt with my Primary care physician. This is when all the testing started. Many blood tests to rule out vitamin deficiencies and thyroidism...these came back in normal range! I also had a geneology test, which, came back showing that I carried both APOE 3/4 genes! My grandfather died with it. Finally, I had an MRI. It showed that my brain had signifcantly shrunk and that I apparently had several mini strokes.

I have difficulty with reading and understanding what I have read...I drive limited, I constantly sundown, or at least 2/3 x's per week! Now, I have difficulty going up & down stairs. It's like my depth perception is bad. Sometimes if I'm really tired or tring to concentrate I get extreme headaches and I have been told that I write letters backwards! I guess what I think and what comes out are different!

I hope this helps. But like everyone else on these boards...we all support each other, no matter what the "monster" inside does.
M

Mary,
I began to notice problems the summmer of 07, I would get lost going to my daughters house. But, of course I said it was stress. I was an Insurance Adjuster for 16 years, and after my husband had heart failure that year, we would no longer travel due to his health, we were both Adjusters and traveled all over the country. I knew I could not leave him alone and took a job as a file examiner for an Insurance Company, which in real life would have been a piece of cake. But, I couldn't remember anything and had to take notes and then not understand my notes, I would get lost coming home from work. I would get lost in the building I was working. I had surgery prior to DX of EOAD for Compressed Spinal Cord. Everyting happened to me all at once. I couldn't remember anything, it was my short term memory. I saw all the DR's known to man, and was finally told I had EOAD, I lost my math ability, my spelling is bad and my handwriting even changed. I do see a Shrink as I call her after having this for almost two years, she has helped me a lot. I live for today and don't and can't worry about tomorrow, it causes to much stress in my life. Stress is my worse enemy. All the things you have been told on this board are from the heart and we all know what lies ahead for us. We have to try and live for today and try to fight this terrible thing that is happening to us. I have a wonderful husband and daughter and grand baby that makes my life a lot better.

Sharon

Do YOU have Alzheimer's ,(EOAD/YOAD), vascular dementia, mixed dementia, FTD, Picks?

Please, share your story with us? We may be able to help?!

hi i have alzhimers and was happy to find this board. i am 74 years old and was dignosed about two years ago. but i knew something was wrong long before. the first thing was i forgot how to spell.have to read everything twice to get it. and get angry at nothing that matters. and have to recall words and names, but it always come back, i am on arecept and it does help. but i wonder for how long.does anyone out there have the same thing ?

Dear bjdaily,

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

I am on Namenda, an Exelon patch and Seroquel. You may want to ask your doctor about adding Namenda to your Aricept. It really helps. I couldn't tolerate the aricept so I use an Exelon patch.

Please, tell me more. Do you live alone? Have you contacted your local AD Assn for help/support?

To find your local Chapter please go to the bottom of this page and click on "Chapters" and follow the directions.

Again, Welcome to Our Family!

Ian,

Hello and Welcome to the AD Message Boards. Wow, you sound like an expert! I'm sorry for your diagnosis.

This is a great place to vent feelings, get information and get a lot of great support from some really terrific people.

I hope and pray the your dream comes true and your able yo marry Lynne.

Please, come back and share more with us.

Ian, I am delighted to see you here! And I hope I'll be seeing Lynne around the forums, too.

Ian I am delighted to see you here. Comimng to this site was my first suggestion to you.
The other poor speller,
bluedaze

I was originally dx with AD in 1997(late)got the actual dx in Jan.1998.
8 years later I told my Nuero I don't think this is AD.He agreed had me retested & Vascular Dementia was what we came up with......The rest is history.......I take 16mg Galentimine & doing very well.I have had anger issues but this tim around the Seroquel caused me breathing problems so had to stop taking it.I also have COPD......Even pain meds other than tylenol cause me breathing probs.so I just keep on keeping on.........

Ian, don't look to a church or courthouse for marriage. Marriage happens on the inside, where every possible feeling is energized and comes out Love. So tell me, are you married to Lynne? I think you are.

I wasn't an expert on Alzheimer's, but I knew more than most people. I was a psychotherapist, with an interest in dementia, often doing evaluations on people with suspected dementia and behavioral problems. And now, here I am, an Alzheimer's patient with behavioral problems.

Hi to All,

I've been thinking ( yea, scary I know).

What does "I do have Alzheimer's really mean??"

Any thoughts?

What does it mean, that I have Alzheimer's?

I think there's more needed for the question: What does it mean to have Alzheimer's at such a young age?

What first occurs to me is, I have a terminal illness, but a really slow one. So slow, that it's quite possible something else will kill me before the AD does.

But lurking behind that notion, and pretty much all the rest of possible thoughts, is fear. I think the scariest thing is in wondering what I'll be like in Stage 6 and 7? Not how I'll look to other people, but how I'll look to myself. What will my moment-to-moment existence be like at the later stages? Will there still be a "me"? Will I feel trapped? Or, will there be no self-awareness?

Let's try again: What does it mean to have AD? It means that every time I disagree with someone, I'm probably wrong. It means that I get behind in a conversation, and don't remember what we're talking about. On a bad day, I can't spontaneously complete a complex thought. It means walking into a monthly meeting at my local Alzheimer's Association earlier tonight, and introducing myself to someone who was there last week, I just forgot she existed, and not because she's a forgettable person.

It means that I've gone from zero pills a day around 3 years ago, to having medicine that is the only reason why I'm living independently now.

OK, enough fun! Off to bed for me.

[QUOTE]Originally posted by Lisa 428:
What does "I do have Alzheimer's really mean??"
QUOTE]

To me it tells me that iot is time to find a new way to feel useful!

Prior to my dx I let my Sr. Engineering position define me. That always made me feel good because I was good at it and few others could say that! It only took the loss of 4 jobs and the opinion of several doctors to change that definition of myself. I still want to stay in denial but find that useless.

Today I spend my time volunteering and trying to help others in my position.

My new position as a Volunteer allows me to feel the same sence of worth!

Hi Lisa,

I think it means that just because we are not elderly, can still function, look normal, & act normal most of the time does not mean that we can't/don't have Alzheimer's.

I think that many of us simply want to stamp our foot and scream "I DO HAVE ALZHEIMER'S!" at the "well meaning idiot" that says to us,(CHOOSE ONE) "You are too together, You speak too clearly, you are still working, oh - we all forget stuff - don't worry, blah, blah blah.

Lynn

Oh my Gosh,

So many wonderful, terrible thoughts!! Thanks so much for sharing.

I think I'm still trying to figure out what having Alzheimer's really means to me!! It's been 2 years since I was diagnosed and I still don't know! I was 53 now I'm 55. So what???

Sometimes my thoughts come out so fast that I can't articulate them fast enough and my mouth gets jumbled full of words. (It's a mess).

Then, often, a can't think of the names of things (this really urks me).

Other times I feel like dimmy dimwit. My processing is so slow that I just can't understand! It's such an up and down experience (roller coaster)!

I have problems sleeping. I have problems with noise and television!

Mostly, I'm angry or aggravated rather than happy. I HATE feeling angry!! (I'm working with a shrink to find the right meds for that). The seroquel helped the anger but I blew up like a balloon and that made me VERY unhappy and ANGRY!

As for the terminal thing, well, that doesn't really bother me. I'm hoping something else will get me first.

I do wonder about the declining. Like others have said, Will I still be me? And who am I now that I have EOAD? I know I'm not the old me. Who is this new me?? Do I even like this new me? Will I ever accept this new me? And, what happens when I get worse??

If I didn't have my little journal book from Emory, I wouldn't remember much of anything! My book is getting jammed with important things to remember.
I have to remember to look in my book (3 times a day) even to remember to take my meds!!

Damn, this is really hard, especially alone! Well, I'm not alone, I take care of my Mom too! lol! They live next door. If it wasn't for my 87 year old Dad, Mom and I would both be up a creek without a paddle!! lol!

Enough for now. If you want to read more, please go to my blog.

Hi Lisa,

You said so much of what I also feel and experience. Sometimes it is just too much. Too much sensory overload, too many words trying to come out of my mouth because if I don't get it all out "right now", well, I can't remember what I wanted to say in 15 seconds. So it is lost. And I know it was important Damn It!

It seems that I live in the right now, and not in a good way. The right now because I can't always remember, what day it is, What I did yesterday even though I was gone all day, what I ate for breakfast, what I need to buy when I make that special trip to Walmart today, what doctor do I see tomorrow, (and then when I go to my list and see which doctor), how do I get there (Yes I have been seeing this doctor for years,)and on and on.

Seems like many times I remember part of things or what I do remember, I remember wrong. The memory book I keep is my bible. I keep everything written down in it. From grocery lists to doctor instructions.

But, I have to say I do not worry about later. Later meaning the later stages of AD, Don't know why? Maybe I am lazy, LOL. Seriously though, I worry about retirement and our finances. Just the normal stuff that I would think everyone retired in this economy is thinking about. I guess this might be the "Head in the Sand" syndrome or a protective thing.

But I just am not overly worried. Should I be? Am I missing something here. I function very well with my AD/dementia. I do take antidepressants as I think many of us do. I do have my "fragile teary days", I have compensated and accepted. Except for this memory stuff that I get frustrated with I feel I am living a fairly normal life. (Does this seem like an oxymoron) HOWEVER .......

I am concerned about this! I have experienced an increase in my overall heaviness/depression since returning to the boards. Remember I do have other medical issues also, like fibromyalgia.

I have been enjoying reading and participating, in the boards. I think I do have something worthwhile to say, but I am wondering if my participation is causing me some distress.

I have always had an empathy for others which does have an impact on me emotionally. It has been overwhelming in some instances. ie saw car accident victim that was deceased. Was days before it did not occupy my brain. Stiil has impact on me. Kind of like a tramatic stress syndrome. I actually that is one of the reasons I had to leave the boards last year. It was too much for me absorb.

It is much like what many people experienced after 911. The emotional trauma caused much mental distress and depression to people that had no actual contact with the tragedy other than TV an newspapers etc. Many required medical intervention.

Does this make sense to anyone?

What you wrote makes perfect sense to me. I can handle the boards sometimes and sometimes I cannot. Sometimes it is just too much reality for me and then I also start worrying about some of the people on the boards in addition to worrying about myself. It helps to know I am not alone in this battle with the monster but then when I read and respond to the postings, it sometimes just becomes too much. Too much pain being experienced by too many people. Too many worries, some of which I seem to latch on to and think about along with my own. I do think the boards are important, however. I guess we just may need to know when to back off and breathe or possibly concentrate on doing all that we can to live the best life that we can.

I agree, I was coming to the board every day when I first figured out it was here, but had to back off for a couple of days at a time. As nice as it is to know there are people out there with the same problems I am having, I tend to go into overload when the conversations are heavy. Not that those conversations aren't important...they are and they also hit home with how I am feeling at times.

Okay, now I forgot what this topic was about. I think it is about people who don't understand EOAD and expect us to look like vegetables when we meet and decide we don't have it because we can hold a conversation. They are very frustrating.

There is a movie on Lifetime Movie Network today at 6pm eastern time. It is Forget Me Never with Mia Farrow. It might not be the best Alz. movie, but it sure helped me. I'm going to try and record it for my friend Doris. It shows how someone with EOAD can hide the problems they are having. If anybody else out there can record it for me I would be very greatful, I'm not sure if I can figure out the recorder in time (it could take days).

Thanks guys,

I was feeling very alone in this and almost embarrassed to share it. I think I maybe even felt some shame, how could I feel that way when I am doing so well. I think the depression for me might also be described as being overwhelmed and helpless in many ways.

Lynn

OK here goes,

Just another resource. Some of you may have seen it before. If not, you really need to check it out. If you have seen it, READ it again. I just reviewed it again and it really once again validated me, my diagnosis, and treatment. It has erased any doubts that I have on if I have AD or not. It seems that I am a "CLASSIC" example. It has assured me that I am normal for AD and that "I DO HAVE ALZHEIMER"S!

So Lisa, for me, this booklet answers the question of what does "I do have Alzheimer's" means.

http://alzheimers.boomja.com/Early-Onset-Alzheimer's-Overviews-92929.html

This should take you to a wonderful resource for Early Onset from Australia. I know JAB has resourced from this agency before. The home page is The Alzheimer's Library and it is fabulous.

http://alzheimers.boomja.com/

Lynn

Lynn,

I couldn't access the first webpage you gave but I did get the second one. Thanks.

I sure wish they wouldn't refer to EOAD as VERY RARE! If it's so rare, why are there so many of us out here?????????

quote:

Originally posted by Lisa 428:
Lynn,

I couldn't access the first webpage you gave but I did get the second one.

OK, I am gonna try to get you there.

GO TO - http://alzheimers.boomja.com/

CLICK ON - Early-Onset Alzheimer's Patients

CLICK ON - Early-Onset Alzheimer's Overviews1

CLICK ON - Younger Onset Dementia -- a practical guide

That should bring up the booklet. Let me know if it works. This was a real trip for me to get these steps listed. I have a headache now. Sure hope it works.

Lynn

Thanks for the link, Lynn. I'm learning more from the people on this board than from the "professionals" I'm paying to help me.

Iris L.

Lynn, my wife loves that booklet! She's printed it out, and put it in a binder. I'm pretty sure she likes it more than anything else I've shown her. Way cool!!

I believe this is the correct link to the guide. Very informative. Thanks for the info.

http://alzheimers.boomja.com/Early-Onset-Alzheimer's-Overviews-92929.html

OOPS, that link showed up the same as Lynn's did, so I shortened it. If this doesn't work, I give up. Sorry about that Lynn, you did it right, it just didn't work righ in the post.

http://tinyurl.com/nxbmvx

Thanks Lynn and Becky. I found the article on Early-Onset AD.

I'm not sure what 36 page booklet people are talking about???

Does anyone know It??

Please, send the link so I can down load and print it!

Thanks again,

Hey Alan,

I am with your wife. That booklet gave me more peace with my questions than anything and anyone has in the past 1 1/2 years. I wish all of us with these symptoms, EAOD diagnosis, and questions had access to it.

Lynn

quote:

Originally posted by Lisa 428:
Thanks Lynn and Becky. I found the article on Early-Onset AD.

I'm not sure what 36 page booklet people are talking about???

Does anyone know It??

Please, send the link so I can down load and print it!

Thanks again,

OK LISA,

For some reason the address that shows does not work but try this.

OK, I am gonna try to get you there.

GO TO - http://alzheimers.boomja.com/

CLICK ON - Early-Onset Alzheimer's Patients

CLICK ON - Early-Onset Alzheimer's Overviews1

CLICK ON - Younger Onset Dementia -- a practical guide

Let us know if it works. If not, I will do a cut and paste of the entire booklet and email it to you.

Lynn

Thanks!