I haven't posted in a while, I sometimes forget about the support group here, even when I am on line often. I have been taking Namenda and from the best I can determine my memory issues haven't change but I guess I really don't know. I can agree with Mary Lee "keeps us from getting worse quickly, etc..." With an earlier dignosis and meds maybe I could have stayed at work longer.
Any one with suggestions for dealing with clutter. I have a tendency to lose and forget things so I pile up note, list, important papers by my comuter. Alas, clutter, I still cannot find annthing and the clutter piles grow deeper! Help

Hi Darryl,My solution to many pieces of paper and notes is to have one notebook 5X7 by the place where I most often take notes and write everything in it in the order that it happens. I always date it and put who called and any other important info. It takes some time to get into the habit of not jotting down things all over but has really helped me be organized and get rid of all those pieces of paper. It helps to have the notebook a bright color or anything that will stand out and with lines. I do nt have AD,my husband does but I so have the same trouble being organized. Best to you Hope this helps a little. Diana

I have been going through testing. So far all of the tests I have taken have come back normal. My Neurologist still suspects EOAD but has not officially made the diagnosis. I am considering applying for Long Term Care Insurance, just in case.

Can anyone advise how I should answer the questions on the application form. I don't want to be deceitful but I don't want to be rejected.

imagudspir: I'm sure others can tell you even more about this but two years ago my husband and I met with insurance reps in order to get long term care.... My husband had not been diagnosed at that time. We were told that many people are turned down for long term-care insurance based not only on the application but on the interview process. We were told that during the process we would be interviewed and our ability to remember things would be evaluated. Since my husband was already mentioning memory problems to doc I felt he would never pass the application process. As you may know insurance companies can refuse payments if they feel you failed to disclose related information.
I hope that others can tell you happier stories.

When I was on Aricept I had some whopper dreams but after a few months they stopped.I now take Razadyne & have the past 7 years,with good results.......

I have EOAD and have been taking a new drug called Namenda with good results. I also take a statin cholesterol drug and so far have not had any problems with it. I come from a family that has an extensive history of Alzheimers and I am the lone survivor as my dad died of it, brother and sister also died from it but they were 18 and 22 years older than me and there wasn't any type of medicine available. Since I have been on Namenda, I have been told I appear to be more alert and more my old self, not depressed like I had been for several weeks. I didn't think I would get this disease as they all had EOAD and usually if our family members made it past 46-47 without EOAD they were OK, but there is always an exception to every rule and I am it as I didn't get it diagnosed until I was 50. My doctor is a very caring man and he did some tests and one of them was a gene test and yes it is part of my DNA. He also had me get an MRI to see for blockage. There is some hope as the drug may or may not be a cure, it does put off the time of when the disease gets worse. I think of it as a step in the right direction and who knows. I pray all the time as I have a son with a family and I don't want this disease to get the credit of doing any more people in. Let's all pray for a miracle!!!!

Hello,
I just came across this message board after doing a google search. This site is great!

I do have a few questions if that's ok... What are some signs of early onset? What is the difference between dementia and early onset? Are there specific tests or questions we should ask before/during the MRI? Does medication work? If so, which kind? How long can someone live normally on medication?

Here is my story.. about 2 yrs ago I noticed my mother(64 yrs old) was forgetting little things, repeating herself, tired all the time, etc. I was on her case about going to see a doctor since Alzheimer runs in the family. Well, of course something had to happen for her to finally go see a doctor. She recently went to Las Vegas with my father. Upon their return my mom's behavior had drastically changed. She not only was forgetting little things, but she couldn't remember anything!! It took her about 2 weeks to get back to herself (which her normal self still is forgetful). In the meantime, she made a doctors appointment. They did a preliminary test (basic questions.. IE: who is the president, what yr. are we in, etc) and they think she suffered from delirium upon her return from Vegas and may have dementia. She goes for an MRI on Friday for testing. I am so scared, because my mom is my best friend and I don't want to lose her to this horrible disease. My sister and I are in our late 20's and can't imagine a life without her. She just seems so young to have Alzheimer's.

Thanks again for a great website!!

Michele

Michelle, I'm glad your doc is sending your Mom thru the testing. Please don't be scared ... instead, get yourself educated by looking at the info on the different types of dementia on the Alzheimer's Association website and also by looking thru all the entries in the early-onset message board. I think you'll find a lot of good answers there.

Being an early-onset Alzie myself and having similar experiences, I wouldn't be surprised if just the act of going on the trip alone caused some of her problems ... and then you add Las Vegas, etc., etc., etc.

I personally get overwhelmed easily whenever I have to go someplace, and then a place with lots of noise & all that just adds to my overwhelmingness. That causes me to have some problems with memory, even tho my meds are working so well now (I take Aricept & Namenda). You may notice her improving over the next few weeks.

Please don't give up ... get educated, and most of all, please keep in touch with us and ask questions anytime you need to hear from us.

Is there an Alzheimer's Association office in your immediate area? Check the Alzie Assoc site: www.alz.org

Good luck.
Mary Lee Hardt
maryleehardt@comcast.net

My husband was diagnosed two years ago with Early Onset, though his symptoms go began when he was 49. He's in stage 5 of 7 now, at age 54, and just retired from the restaurant business. I'm interested in starting a communication with someone who is a caregiver of any Early Onset individual. Thanks!!

Denise-NC asked about symptoms: look for out-of-the-ordinary memory loss, like forgetting how many zeros are in 3000 or how tall you are.

Hi, My husband was diagnosed 2years ago at 56 but looking back the symptoms were there around50 when he first went to the Dr. to tell him he felt something was wrong with his memory. Heno longer workds and I am his promary caregiver. I would be happy to talk with you email or phone. Diana

Hi All,
I am about to do neuropsych testing at suggestion of husband, psychiatrist, OB/GYN. Lost wedding ring, lots of pairs of glasses, car keys, cell phones. Quit work three years ago when employer said I was making too many mistakes. This has NEVER happened before. My recall is impaired, judgement is okay. I'm scared about results of testing. I've survived cancer and am afraid of dealing with another life-threatening illness. Any thoughts would be gratefully acknowledged.

Terri Ann,
Take a deep breath in and out! Just do your best on neuropsyc testing. Make sure you see a good neurologist. Remember, you are a surviver!! Remember anxiety increases memory loss and forgetfulness. Take one step at a time. I know this is frightening. We're all here for you! Breathe!

Peace and Hope,

Hi Terri Ann,

“take a deep breath…” good advice from Lisa

Your are not alone, after required cognitive contesting I was informed by my last employer, based on my diagnosis I was unable to perform the duties of my profession. I was unable to overturn employer’s decision. I engaged in all the usual signs of mourning loss

All life provides us with equal reason to look toward the feature with fear OR with anticipation of good tidings ahead, change will happen. Being an advocate for others, and me with EOAD, has provided me with a reason to continue the struggle and rewards me with a World of new friends. Life without the WWW, now that would be daunting.

Terri Ann, Where are you in Maryland? I was diagnosed by an excellend neurologist who has an office in DC and one in Olny. Please respond back to me via email & perhaps we can "talk" ... good luck, one way or the other!
Mary Lee
maryleehardt@comcast.net

Hello , I just found out about this site. My mother started having memory problems at age 50.Today she just turned 58. Her short term memory is completely gone.Not even 2 seconds she forgot what you just told her.She was diagnosed with Alzheimer 4 years ago, but now a new neurologist says she could have Pix disease. She lives with me.It's extremely hard to deal with her.She barely talks.She shows no emotion most of the time.It breaks my heart she barely interacts with her grandchildren, my children.And she doesn't speak English, so she's stuck with me and can't go anywhere in this area because all services are in English.I wish there would be something else I could do.I feel hopeless with her.

Yes I have been diagnosed with EOAD back in Sept 2007 and have been on disability retirement (I was 50 when I was diagnosed since then as no one wants a alzheimer patient working for them when we might "flip out" but am taking namenda and seems to keep things in check but have a family history of dad, brother and sister and because of that I am very concerned as I don't want to pass to soon. but still not certain am doing all I can to avoid slipping into full blown ALZ. I too have read of taking Lithium Aspartate or Lithium Oratate to help reguvenate the brain cells. Has anyone tried them?

Anyone who has been diagnosed with Alzheimer's, even early-onset, should apply for social security disability! You may get turned down the first time (seems like that's the norm, from what I hear), but you can appeal.

Go to your nearest social security office, and the staff there will assist you in completing the application. From what I understand, they can do it online for you, so you get an answer pretty quickly.

Good luck!

Mary Lee
maryleehardt@comcast.net

My husband 68 could not take Aricept because of all of the GI side effects. The neurologist put him on Razadyne and Namenda. It is working well

i hope i can keep my thoughts organized enough to spit this out. i have no insurance and have had to cut back my time (and responsibilities) at work. i am in the diagnostic process through public health. that pretty much means i am on my own. also that same public heatlh here in denver is notortious for experimenting with you without telling you what they are doing or what the consequences may be. for instance: because i am diabetic they want my cholestorol lower and gave me "free" crestor although i was doing well on lovastatin. 4 or 5 weeks into it i began having muscle spasms and weakness in my legs, tingling in my hands, and anxiety attacks
with depressed moods. i looked up crestor on the net and was horrified to learn that it was meant to be used as a last chance drug and was the most potent statin possible and it woarsened symptoms of AD and other forms of dementia! also the crestor company was trying to prove itself through extensive testing...hmm free crestor, eh! i stopped taking the crestor and all the above symptoms cleared in a week. i don't feel i can trust these people. so i figure i am on my own. i have discovered 2 things i wish to place before our little community: methlycobalimin (a form of b-12) and phospholipids. i discovered the b-12 when researching a means to slow down my partner's diabetic nueropathy. it has been of considerable help. the phospholipid thing is new to me. my neighbor is in health reserach and a friend of hers recently gave a paper on phospholipds-in-dementia in nashville. it seems to be showing some promise in repair! of damage and improvements in cognitive functioning. i have only been taking them for 2 months so i have nothing to report now except improved sleep with the b-12...methyl b-12 taken under the tongue, not the cyano form in vitamin pills (it is renedered ineffective in our tummies). the reasearch on phospolipids can be accessed on the net via the 12th annual hypertension symposium 2007 or parris m kidd phd, pmk biomedical consulting, grass valley california. i am also looking into chinese medicine. after reading all the good stuff on this chat room thing, i plan to start a journal (too). writing really seems to help methinks. anyway...there this is. anyone else out there heard on any of this stuff? jbell

John, I'm sorry you've had so much trouble. Please NEVER feel like you are alone! You are NEVER alone. If nothing else, those of us on the message board are here to help and comfort you along the way!

Also, the Alzheimer's Association is extremely helpful. please contact your local office immediately. Their address and phone num:
455 Sherman Street, Suite 500
Phone 303.813.1669

They will be able to help you find some good docs and steer you in the right direction in many ways.

If you find you have to quit working because of you Alzheimer's, you can apply for Social Security Disability. if you have to quite because of Alzie's, make sure your place of employment KNOWS you have Alzie's and puts it in your employment record, so it'll be in your file when the Social Security folks check with them.

Also, for ANY doc you see, make sure they put in their file that you have Alzheimer's and are not able to work anymore. I hadn't informed mine to actually put those words in my file, so it caused problems the first time I filed ... had to go back for an appeal (and won!).

By the way, if you can't work at a "real" job but feel like you want to keep your mind busy (and I say this to any Alzie!), do volunteer work at the Alzie Association's office. They always need help with stuff WE can do for just a few hours at a time (which is all I can handle, myself). You also have the opportunity to learn more about Alzheimer's and will feel like you have a handle on this horrible disease and can prepare yourself for the inevitable future. (To those of you who don't have a local Alzie Association, volunteer at any association or someplace like a library. We HAVE to keep our minds as active as poosible!)

Good luck. If you ever want to contact me privately, you can send an email to me at
maryleehardt@comcast.net

Mary Lee, a happy EOAD

mary lee. thank you so much. several things in your reply i had not considered. the owners of the record store where i work are like second family. they will help all they can. and thanks for the encouragement. my email box won't let me reply at the moment and peoplepc is slow to respond. hope to start responding on a more personal basis soon. will look into the volunteer thing for sure...a matter of the heart. jbell

mary lee your recommendation to john "By the way, if you can't work at a "real" job but feel like you want to keep your mind busy (and I say this to any Alzie!), do volunteer work at the Alzie Association's office. They always need help with stuff WE can do for just a few hours at a time (which is all I can handle, myself). You also have the opportunity to learn more about Alzheimer's and will feel like you have a handle on this horrible disease and can prepare yourself for the inevitable future." is good for any one of us. I would add to check for an Alzheimer’s Town hall meetings with the Alzheimer’s Association office near to you. I attended Early Stage Town Hall Meetings in Chicago IL during May of 2007 and in Washington, D.C. in May 2008. I found Town Hall Meetings to be the among my most positive experiences since my diagnosis with dementia. One of most important feelings I took to heart is the experience “I am not alone". The support gained by sharing similar experiences and issues with others diagnosis with dementia and Alzheimer’s can provide support, strength and a way forward. I hope you can join in a local Town Hall Meeting.

Has anybody else out there had any similar experiences and can to shed any light on where things might be going for me?

Hello, my name is Ttom and I was diagnosed with Early On-Set Alzheimer's related dimentia last month. I was 58 then but now I'm 59. This is good, right... I continue to get older! At this point I have no idea what is to become of this but I don't want to be in denial. After being diagnosed by three doctors (my family MD, a Psychologists and a neurologist)I was immediately started on Aricept. After about three weeks Namenda was added.

In 1982 I was involved in an automobile accident. I ended up spending 30 days in a coma plus another 3 months in the hospital before they were going to release me to a VA home. I elected to move in with my father in Florida and worked to recover and return to work.
I have worked more than 30 years as in Electrical Connector Manufacturing with the last 15 years as a Sr. Plastics Engineer. In 2005 I lost that job when the company was bought out and my job was relocated in Asia. Since then I have bounced around trying to find a local job. There are no other similar jobs in the area so I've been attempting to use past skills. Since I was a Tool and Die maker in the 70's I tried a Toolmaking job but was fired as I lacked something but I have forgot what they said. Next I tried to be a toolroom mangaer but was fired for about the same reason. Now I work as a nail gun repairman. Absolutely nothing wrong with what I do but when I look back, it seems that I have regressed a lot. None of my formal education is being used. I know that my organizational skills are shot and my analytical skills are suffering.

Thanx in advance for any replies.
Tom

My wife is 66 and was dx with AD when she was 59 but not for EO, which I understand that the only conclusive test for EO is by DNA !! I've been reading some of the comments about DX for EO but haven't seen the DNA test mentioned. Is my info correct about the testing for EO?? It is also my understanding that if you have dementia at a early age, it is not always EO?? Thank you in advance for your replies.

When I was diagnosed 5 years ago this month (unbelievable, but true!), the final test according to my wonderful (world-renowned) neurologist was said to be the PET scan. I had already been through all the other testing up until then -- the blood work, MRI, neuropsychological testing -- but it was the PET scan that was the final say in my diagnosis.

I haven't heard anything about the DNA testing, but that doesn't mean it isn't so! Call the Alzheimer's Association and ask them if they've heard about it -- and please let us know via this message board!

If you haven't read other message board entries and haven't seen mine, here's my story

I'm taking Aricept and Namenda, and I feel like they're miracle meds for my cognitive functioning ... in other words, my memory is great, and my mind seems to be working pretty well "for my age, etc." I have other problems, like horrible organization skills that used to be the best, getting overwhelmed easily, & stuff like that. But -- I feel like a happy camper, otherwise!

Please check with your neurologist about the PET scan.

Are you on disability? Have you applied? Or are you working?

(I was placed on permanent disability by my company immediately; I eventually applied for social security disability -- so I now receive disability from both my company's insurance and social security. It isn't more money than I was initially receiving from my company's insurance, but the two add up to that initial amount, if that makes sense. If it doesn't, write to me & I'll explain further.)

Good luck to you ... and anybody else reading this. Always feel free to write to me "privately" at my email address, if you wish.

Mary Lee Hardt
A very happy, thankful EOAD!
maryleehardt@comcast.net

I was diagnosed 2 years ago at age 56. Went through the 5 hour nueropsych test and medical tests.My wife, a social worker does not believe I have AD, rather anxiety. We are now separated.

Does anyone still driving use a GPS system?

You should ask your neurologist to have you take a PET Scan, which was the final test that diagnosed me with Early-Onset Alzheimer's 5 years ago. Please, please try to convince him to do it for you. And, as an EOAD who has been on the meds for 5 years now, I can testify that Aricept and Namenda are miracle meds for those of us who can get it diagnosed early!!

Good luck.

Mary Lee Hardt
maryleehardt@comcast.net

Charlie58,

Yes, I use a GPS system. Before I was dx'd with EOAD at 57 I had gotten lost twice while driving. After being dx'd my family immediately bought me a GPS for my truck. I have not had a "lost" experience since being dx'd and starting Aricept and Namenda but we hope it will help me. In the meantime it has been useful when going to new cities.

My brother was diagnosed in March 2007 with a pet scan, but we think he had the symptoms. 5 yrs before. He was a prominent lawyer with 25 yrs experience. He lost everything-his practice,his wife left him, his house and deep in debt because of his illness. We tried to keep him living near his siblings for a year with a caregiver in the house. He did not like having anyone in his house. However, he did quite well.Last year we moved him near his two sons in another town. He now lives next door to his son with all his belongings, art, books and music. He also has a yard so he can garden. I worry about him being alone. He can not cook because the stove is kept off for safety reasons as well as not being able to drive. These are the hardest things for him to accept. He is on Namenda and exelon. He has bouts of paranoia and becomes very quiet if alot of people are present. I quess my greatest question I worry about is,how long can he live alone? Is there anyone out there with AOAD who lives alone? Pat from Seattle.

Pat -- bless your brother's heart! It's so frustrating to hear about people like him who has lost so much because he wasn't diagnosed earlier. Has he applied for SSDI?

You should make sure he has been registered with the local police in case he wanders off somewhere. Also, there is a "MedicAlert" program you should check out -- see this webpage: http://www.alz.org/we_can_help_medicalert_safereturn.asp

You also could check on at-home care. I know this might present problems because he doesn't like other people around, but it's worth a try.

Please check out the "legal issues" section, too -- http://www.alz.org/living_with_alzheimers_legal_issues.asp

As a matter of fact, if you haven't looked at all the info available on the Alzheimer's Association website, I advise you to do so. There's a boatload of great info available! Also, call them for support -- locally, if available and/or nationally.

Best of luck to you & your brother & family. Keep in touch to let us know how he is doing.

An EOADer -- Mary Lee

Ava's story is my story. My husband, a family doc specializing in geriatrics, was diagnosed last Oct. with EOAD. He, too, lost his practice. He went from working 70+ hours per week to nothing. I went from being alone all the time to never being alone. I think a hundred years from now people will say "Do you know that 100 years ago, they didn't let people even work if they had early onset Alzheimer's?" Medicine is in the stone age with regards to the brain. In the meantime, I am struggling to cope. My husband seems to have little initiative and looks to me to plan and initiate activities. He and the dog follow me from room to room. We are having financial problems due to denial of our disability claim by his employer. Thank God, he qualified for SS disability. I'm on lexapro and it's helped, but our lives and hopes for the future have been dashed. We've been married less than 7 years and I wonder where I'll get the strength to deal with what's ahead.

Christine, I saw your other post on the "Who Are You?" thread. I am so very sorry for what you're going through. It is unconscionable that your husband's employer would have denied his disability claim on a technicality. I do wonder if you might not be able to take some sort of legal action... Many lawyers will give you an initial consultation for free, it might not hurt to check into that.

I'm sure it is much more difficult to deal with AD in a husband when you have had so little time together ... and especially when his children have been causing you grief throughout your marriage.

The people here are wonderful, and I'm sure you'll get lots of helpful advice and cyber hugs.

However, we spouses sometimes get a little lost among all the caregivers for parents and grandparents here on the Alzheimer's Association boards, although there are a lot of us. And it is a very different situation when you are caring for an AD husband. I would suggest that you also look at The Alzheimer Spouse:

http://www.thealzheimerspouse.com/

It's for those of us whose spouses have AD. The link to the discussion forum (message board) is near the top of the green menu on the left. We can talk about things on Spouse that just can't be discussed here... the unique emotional (and financial and legal) concerns of a spouse caregiver. Many of us post to both sites, since both are very helpful, but also very different.

I don't know if I qualifiy as EOAD, I am 66 yrs old and just diagnosted 4 weeks ago. I am currently on Aricept. I sure could use some encouragement and someone to talk to. I guess mainly just to know that I am not alone, if you know what I mean? I Would love to hear from anyone willing to spend some time talking with me. It seems that everything is going so fast and this is all so new to me that it is difficult trying to just cope. Thanks to anyone who cares enough to talk with me.

AJ,

Sory to hear about your recent diagnosis. But, welcome to this board and I'm sure that you will find several supporters here. What led to your diagnosis? Most of us that have been dx'd are sure that we had been affected for many years before the official proclamation. That would qualify you as EOAD.

I was put on Aricept immediately as well. Are you experiencing any negative side effects?

Hi Tom, Well, good to hear from you. The only reaction I have had from Aircept has been some leg cramps. But I started putting cold cream on my legs and that has helped. Other than that I have had no reactions. Tom, I have had Partial Complex Seizures for many years and have been on meds. for that, The type of seizures I have would short cicuit my short term memory, but through the years that was helped tremendously with anti-sezuire meds. So, when I started having more problems with my memory I just thought it had to do with the seizures. When I went in for my yearly check up to my Neurologist, he decided that since I had not had tests in the last few years,that it was time to up date by giving me some more tests, especially since I had indicated I was having more memory problems. That is when they found that there was mild to moderate generalized cortical atrophy felt to be too advance for my age. The sulci is slightly prominent with creased promoinent cisterna magna versus a posterior fossa arachnoid cyst. There is increased CSF fluid towards the vertex. He said moderate generalized cortical atrophy felt to be too advanced for my age. I felt something was going on but did not know exactly what, so now I know. I go back to the Dr. on 11/25/08.

Thanks for writing to me, I really need all the contact with other people who have these disease I can get.

I often forgot about the support from others online with EOAD. My community doesn't have a on going support group just for EOAD and I would like to be in one or start a new EOAD group in Dane County Wisconsin, any one have ideals on starting up a group? I have checked with the local Alz Assoc Chapter without success

If the locals are being yokels, your next step might be to contact the national office guys.

Hello and welcome to All,
The AD message boards are a wonderful place to gather information, share emotions and get a lot of help and support.
You may want to call the AD helpline @ 800-272-3900. There are professionals there 24/7 to assist you.
Please, read the different threads to see if the info you seek is there. If not, start a "new thread."

I agree with Alan. If the 800 number isn't helpful (which it usually is), then call the corporate headquarters in Chicago!!
You are not alone. We're here to help you!

Again, welcome!

I have not been formally diagnosed, but fit the criteria. I am 58 and terrified. My behavior seems to be pushing my kids (& others) away and I am alone anyway. In the few posts I read everyone sounds so calm about this.....how are you doing that? I wonder how much longer I can hide this from everyone and also how much longer I will be able to work. I am wondering what others are going thru emotoinally and behaviorally? I seem to be speaking without thinking and getting myself into a lot of trouble.....is anyone else doing this? Can this be a part of EOAD? I have trouble reading but am so thirsty to know more. thank you for any info or suggestions. I have no insurance and very little monry right now.

Dear LB1981,
Hello and welcome to the AD message boards. I'm sorry for what brings you here but I'm very glad you found us.
Are you in the process of being diagnosed (testing etc.)? This is a very difficult time for you. We've all been there. It took many months of testing for me to get a diagnosis.
Hi, I am Lisa, dx @ 53 with EOAD. I am, also, a caregiver to my Mom who is 77 and has AD.
First, take some slow, deep breaths!! Believe me, none of us were calm during the diagnosis period and for months after that. I still get pretty hyper at times. Medications and time do help. Behavior changes are common with EOAD.

Is there a free health clinic anywhere near you? Have you called your local AD assn for help? You may want to call the AD helpline @ 800-272-3900. There are professionals there 24/7 to assist you. You don't have to have an official dx to get help.

Good Luck. Hang in there.

You may want to start a new thread sharing your story with others. Make sure you say you are New and need help.

Again, welcome.

You are not alone.

Hi LB1981,

My name is Tom and I was diagnosed with Alzhiemers related dementia when I was 58. Lisa has already given you the phone number that you need to call ASAP....800-272-3900. I hope they can line you up with an affordable Neurologist.

All of the symptoms you have mentioned are part of my problem also. Your problem with reading is part of the reason why I no longer work as a Sr. Engineer. The arguementive problem you refer to is what alterted my wife to begin my testing. Saying one thing when you mean to say something else is a big problem of mine also!

My heart goes put to you and I wish you the Best of Life!

Hello LB1981

My name is Mary, I'm 49. I was diagnosed(?)with EOAD (early onset alzheimer's disease) August 08.
Also, I resigned from my career Jan 6 2009.

I believe next week I will be having the neuropsych test. Not always sure, days have really no significant meaning any longer.

Everybody deals with the "monster" differently. Just remember, it is what it is. You will most likely go thru various stages of feelings....god knows I have.

Definitely, get in touch with your local AD Assoc. They will be compassionate and informative for you. They see this every day.

Please, come back, let the board know how you're doing....this has been a life saver to me. These folks know EXACTLY (or pretty close) to what you do or don't feel! At times, I think talking with these folks is not only inspirational,sad and funny but, informative. These boards give me strength

Thanks All

Wow....thanks for the great feedback. It is nice to know I am not alone. I am single, about to lose my home, my business is not doing great...but at least I work for myself and control my schedule (I work by appts) so I can pull it off and hide it....is it common to feel the need to hide it? Right now I just don't have the money for testing and such. I have very severe reactions to pharmaceuticals so can't take them....but I hear there are holistic things that help a lot and I am trying some of that which seems to have helped me a lot, but when I get really stressed I find myself in trouble. I float in and out of denial too. When I shared my fears with my children they did not seem surprised and me ex said he could have told me years ago I probably had it...he was joking, but not really. I don't remember what I did yesterday or with whom, what I ate, etc. I lose time and space too......is this common? I haven't called that phone number yet....maybe too scared?

Also, I felt that the one MD I did go to did not take me seriously. I was so frustrated. He ran a bunch of tests on me but no diagnosis. He put me on natural hormones which did help after about 6 weeks, but after 2.5 years on them it feels like I still have way too many symptoms. My daughter and I were having serious relatoinship issues.....she was so angry at and passive agressive with me. Then she met a new friend whom she really clicked with whose mom died of Alzhiemers and now she, so far (it hasn't been long yet) is being really nice and loving to me regardless of what I say or do. She sent me an email a couple of days ago saying is sucks to grow old and told me she and my grandson (2.5 yrs old and why I spent the money for testing)loved me and would be here for me every step of the way. It brings happy tears to my eyes to talk about it. I think my son will come around too...he usually just calls me for my birthday and mother's day. This year for my b-day he sent me a beautiful Marmot Gor-tex mountaineering jacket. I about died when I opened it. So I am just now starting to see this may bring us all together. There is a gift in everything. Thank you all for being here and listening to me. I sooooo don't want to go thru this alone.

Hello LB1980

I also have EOAD, I was told April 29, 2008 at 11:00 A.M. What everone has told you is true. I have a hard time dealing with this, my short term memory is so bad, my spelling is so bad, I cannot do simple math very well. I get up and my husband will ask me what kind of day I am having. I try to have good days, but some are not so good. My children at first at a hard time thinking this could happen to me. But, like Mary says it is what it is. I also was fired from my job and am now on S.S.D. and long term disability from my job. I no longer drive. My life as I knew it is gone. But, I do not feel sorry for myself, that does no good. I just get mad. It is good for me to read what others like myself say here because I can relate to it so well. All we can do is try to hang in there.

Sharon

Oh Sharon, bless your heart. Thank you for sharing......you sound wise and experienced. I also think it is important to try to stay positive. On my good days that is a piece of cake for me, but on my bad days its like a demon has taken over. Also on my good days I go into denial and my bad days feel like a slap of reality in the face. When I go thru this website and read where I may be going I panic. When I comes to terms with it I know I'll be OK......at least I think I know that, lol ;-)

Hello LB1981 & Sharon

Sharon do you recal when I told you that my oldest daughter was in denial? She's finally coming to accept the "monster". I can't begin to say how much better I feel. I have never "not discussed" ALZ in front of her. Like I've said, I'm a realist and it is what it is. But now, there's no longer a "wall" between us. That's one hurdle jumped over!

LB1981

Don't be afraid of the "unknown". You obviously have a computer. Start using it. Google alzheimer's, every buzz word that stands out, google that too. It will help you at least somewhat understand what is going on.

My neurologist is "hesitant about labeling" me. I guess what she doesn't realize is, when my primary physician gave me the diagnosis of E.O.A.D. "based on all of the tests that I had, it is 97% accurate!), I almost felt relieved becuase, I knew I wasn't crazy! No it wasn't because I'm blonde/gray...HaHaHa!!!

There is actually a "reason" for my inability to remember new materials (especially for work),the confusion, and of late, not recognizeing roads, places, buildings, etc. Also, I can no longer handle money. I have no idea how to count currency. In example, counting singles to equal a certain amount? Looking at currency, I can sometimes differentiate the coins, but, I can't add the denominations in my mind. it's like seeing it/thenm for the first time. Try to follow a recipe...have some salt with that cake? I've done it, forgot how many times I put the ingredient(s) in....I can only laugh and move on. I told my husband he's my guinea pig, just like when the kids were home and trying to learn how to cook.

My latest visit with neurologist. She had stated I needed to s/w a psychiatrist. I'm not crazy! Why is one doctor ready to "label" but the other isn't? I guess it was easier to accept the first time around, but to bring those emotions back, it's difficult to face once again. The primary care physician is suppose to call the neurologist to discuss. At least she understands my frustrtation, and, yes, sometimes my anger?

Anyways, tomorrow I'm going to our state's capitol w/the Alzheimer's Assoc. to visit with the WV Legislature. Most importantly, to s/w these officials so that hopefully, they will understand that "every 71 seconds" somebody is being diagnosed with Alzheimer's and that today, Alzheimer's has "moved up to the sixth place" as the leading cause of death! Wish me luck & support tomorrow. I just hope I can remember that statistics so that I won't make a fool out of myself. But then again, maybe that's what they need to see? LOL

Mary, I like your sense of humor. Thank you for the wonderful response. I could relate to so much of it. there are times when I look at numbers and can't figure them out either. Same with words when I try to read, or when I look at a calendar to make an appt. In my business I try to round everything off to the dollar. Yes, it is nice to know why I do these strange things nobody can relate to. I have a zillion questions and have a hard time reading due to learning disability type thing, which must come with it also.

Kudos to you for going to your state's capitol for all of us. We need people like you. Although my kids seem to be starting to realize I may really have this they don't seem to want to hear or talk about it. It is like a taboo subject and I have this experinece with my friends and others too and it doesn't feel very good.

I can only read so much about this because when I see what I have to look forward to I feel anxiety which I understand pretty much comes with it all too. From what I have read I believe I started getting this monster about 15 years ago and it is progressing very slowly, thank God. Because of another health issue I have been forced to take really good care of myself which is a huge gift right now. A year ago I also started switching my diet to a raw food diet so when I can't have an oven I won't need one. When I first heard of this I thought it was really extreme, but after researching it out it just made so much sense and when the food is prepared properly it is delicious and incredibly nutrient dense. I am taking clsses to learn how to fix it so it tastes good. the downfall? Raw foodists typically live to be in there 100's and I don't think I want to live that long. I've been going thru my stuff (over and over) and trying to get rid of everything I don't really need to simplify my life and after I lose my house (whihc will be in about another 12 months or so from what I understand) I may put up a really simple living structure somewhere closer to town. I am trying to get ready. I want to be as prepared as possible. Am I dreaming?

Best of luck tomorrow. I'll keep you in my prayers.

Mary,

Go Girl, I think I would get a different doctor. I went to see my neurologist today & I am having another MRI to see if this is getting worse. My vision is the reason he wants to have this done. I went in with my list and everything I ask he said was due to ALZ. How I hate this disease. I see OK at times and then I can be on my commputer and I can't see well. All I can say is whatever. I am so glad your daughter is coming around. I tell her if there's things you want to know ask me now. She said mom if there's things you want me to know you'll tell me. She has no idea what I am talking about. My son never ask any questions, he just says how it going. I think sometimes when family or whoever think of ALZ we scare people. Maybe I'm nuts, but that how I feel.

Sharon