I have read that eight years is the average length of time for the AD person, yet I hear many people here talk about 10 or more years. I would be very interested to know the following. 1. When did you first think your spouse had a problem? 2. When did you actually find out your spouse had AD? 3. What stage is your spouse in now? I thought my DH had a problem at least 3 years ago and found out he did have EOAD less then six months ago and he is already at moderate to severe stage which probably is stage 6. He seems to be going down hill faster each month. Is this the norm?? This morning he told me he thought he was having a nervous break down. I don't talk to him about AD because it depresses him so much and most of the time he is in denial. All week he has been totally off the wall in his talking and can't remember what I say for 5 mins. He is so tired and says he feels weak. He seems to be eating less and his sleep is disturbed which is really unusual. I want him to go to the doctor, but he doesn't want to and I know there is nothing they can do. Geee...am I down this morning or what??
Judith, i am sure some of our wizards have more info on statistics, but in my own case, my DH started having signs in '98 of short term memory, drs dx'd stress and job burnout, so he started retiring. '99 he was still having more signals so did all the neuro testing and in mid 2000 dr said signs of atrophy on mri and vascular dementia and/or AD..since that time, if you count 98 its 10yrs, and hes in pretty good shape physically except for the myclonic jerking in the am, he toilets, feeds himself most of the time and can follow directions pretty well. its hard to reallly know what stage as they bounce in out and it can vary. but my best guess is hes late stage 6 or early 7 after 10yrs. i think it also depends what type of dementia they have and contributing related health issues they may have on top of the AD. all any of us can do is keep him as happy and healthy and safe as we can can under the circumstances. divvi
Always remember this motto - "When you've seen ONE person with AD, you've seen ONE person with AD." It means that the disease manifests itself differently for every person that has it. Everyone who has it goes in and out of different stages at different rates with different symptoms.
Some people go downhill quickly, no matter what medicine they are on; some people stay fairly stable with only little dips for years and years.
In GENERAL, and there really is no "in general", but as general as you can get for AD, a person with the Familial Early Onset type (very young - under 50) will go downhill rapidly. Someone who has the other type of Early Onset (before age 65), and is in otherwise good health, can live for 20 years or more with the disease. You mentioned EOAD, but you did not say how old your DH is.
Sorry I can't be more specific, but that's the way of AD.
Joang: My DH is 6l. Something I have noticed and have not heard anyone mention is that the lines in his face have increased 10 fold in the past six months. I can't believe how many lines he has and he has not lost any weight that I can tell. He has always been a hyper person and so am I. We talk fast, walk fast, do everything at a fast pace. However, when we go shopping I still walk fast, but now I have to slow down because he is 20 feet behind me most of the time. One day I think this terrible thing is going fast and I say "Great" he won't have to suffer so long. Then I feel so guilty when in a few days he seems so much better. Thanks for your comments. I am just at a low point today and you all here are so great in helping us get through these bad days.
I realized my DH had AD three years ago. It took a year to convince his doctor to test him and get the diagnosis. His decline has also been rapid, and his is getting physically weaker now. Looking back now that I know what to look for, I would say that he had the beginning symptoms which he tried to hide at least a year before I noticed it, so he is 4 years into AD and at Stage 6. He can still feed himself, dress himself (but takes 15 minutes), and is not incontinent. His language skills have been limited to one or two words (no, yes, okay, very good, etc.)for almost a year now. He can't verbalize what he's thinking. When he can link 4 words together that make sense, I'm thrilled! He has lost time, the days of the week, and this week he lost the ability to use the remote controls. His doctor says that the medications (Razadyne and Namenda) work on 70% of the people. My DH is one of the 30% it doesn't work on. They say that AD patients have declines, level off, more decline, more leveling off (sometimes for months or years), etc. My husband has never leveled off. It has been a steady decline since diagnoses. As to how much longer, it is as Joan says - anywhere from 2 years to 10 years or more. All we can do is love them, take care of them, and then let them go.
We first sought help for memory issues in 2001 (my husband was 55 at the time), after a year or more of increasing problems. His doctor felt it was depression, but sent him to a neurologist. His MRI showed some abnormalities, he scored a 27 on the MMSE. The neurologist said that was within normal, but tried Aricept for a month, and since he showed no improvement with it, we were told that meant it was not AD. Over the next 3 and a half years, I would tell the doctor he was declining; finally insisted that he be referred to a memory center for an evaluation. He had had to retire in 2001 as he could no longer do his job. When he finally did all the testing in 2005, he was diagnosed with moderate AD.
He is now advanced. His decline has been pretty gradual, but after suffering a seizure in January, the rate of decline seems to have accelerated...he has not leveled-off since then. For the first time last week, he did not know who I was.He struggles for words, but has kept verbal abilities longer than many. We went through some tough times of anger and raging. He is not yet incontinent, but needs help with showering, dressing, and can do very little for himself.
Bottom line, we are into at least 8 years of the disease.
My husband was diagnosed in 2005. Knowing what I know now, I think I started noticing changes in 2002. In 2005, he fell and had a concussion. Shortly after that he had some surgergy. After that, I saw a rapid decline. He is now in Stage 7 and still declining. Many of the books and articles I have read say 3-8 years after diagnosis. The key here is diagnosis. Many people are not even diagnosed until the later stages of the disease. Then there are a lot of people who live longer - one woman here at work, her mother lasted 20 years.
i found an article from alzheimersupport dot com that if you type in showarticle 1840' it brings up the article 'Life expectancy after diagnosis- its has some facts that support this question posted. divvi
One of the problems with identifying the length of this disease is that there is no diagnostic test that says today you have this disease, but last year you didn't. Without some test that tells us when it starts, we can only guess at when we noticed something wrong and therefore the disease started. And when you add the amount of covering up that our LO can manage, even that is a guess. I suspect that people are getting diagnosed (or at least family members are trying to get them diagnosed) much earlier than used to happen.
With more info out there about AD (and other dementia), people are getting the message that getting older doesn't mean you forget a lot, but it is a disease of some sort. Since people are active and working at an older age than before, those memory deficits are more noticeable and we notice even sooner.
And, medicine has improved. Doctors are no longer "gods" that are not to be disturbed without good reason, and if we don't agree, we get a new doctor. Those other factors (diabetes, heart disease, etc) that exist with the AD are being treated better so we don't die of those while we have AD. Check any other forum and there is always someone telling a family member that is past time when their LO should live alone or take care of their meds by themselves. Even the LO is getting more attention paid to making sure they are taking whatever meds they need, that they are eating as they should, getting medical attention as needed, etc.
It seems that for every person that spends years looking for the correct diagnosis, there is someone else who accidentally finds out their LO is in middle or moderate stages and they didn't suspect anything was wrong.
My DH was "diagnosed" about 1 and a half years ago. Depending on which medical person you talk to, he has AD, or cognition problems, or his memory is "not bad", or he has no brain disease, or his bipolar disease is out of control, etc. He had the half day neuropsychological testing (MCI) that kind of started us on this wonderful journey. But his psychiatrist had mentioned the test briefly a year before he had the testing. But he was diagnosed with sleep apnea, so that was probably the cause of his problems. Would the testing, if it had been done then, show the same results? Was it just stress or something else at that point, but MCI a year later?
My DH was hospitalized in April for a "med adjustment". His assigned resident changed his diagnosis from bipolar to mood disorder secondary to AD after my son and I insisted we had dealt with the bipolar for over 15 years and this stuff was different. With sleep apnea, diabetes type 2, and a long history of depression, the doctors all want to blame these for his problems.
i just read an article about sleep apnea and possible alz linkage. they are saying the snoring that stops./starts during sleep causes brain cell injury and can be a possible link to AD. my husband has suffered this for most of his life! and he does stop/start and i have to nudge him out of it sometimes...any body else spouse have sleep apnea?? yesterday, sunshynes post at NIH also said sleep apnea could be a link to myoclonous jerking too..hummmmm....divvi
divvi, My DH had a sleep test and has severe sleep apnea. They acutally measure how often you "stop breathing" and how low your oxygen levels go.It is considered to be a big factor in sleepiness, as you either partially or fully awaken during these times.
DH uses a CPCP machine that blows air into his nose or mouth (depending on the type of mask he uses) to keep the airway open. When he first started using it, he was much more alert, less confused, etc. as he was finally getting lots of sleep and restorative sleep also. And, a lot of neurologist consider that to be a cause of mental problems. In his case, he was compliant with the CPAP (there is a smart card in machine that records usage) according to his sleep dr. and yet still had more and more problems with concentration, memory, etc. So, the theory is that while the sleep apnea may cause some problems with the brain, it is assumed that if he is using it as he should, there should not be additional damage and therefore no change to the brain function.
mine never used any machine. i think he was tested during the first yrs of possible AD as dr sent him to do this test for the apnea.guess they didnt find much casue he never used anything..but the apnea is definately there now..divvi
My husband has been treated for sleep apnea for years. Always uses C-PAP and over the years has had three sleep studies. With or without C-PAP he has always been tired during the day. Although he started reporting memory loss in 2001, drs. did not take him seriously. He was treated for depression, migraines, inner ear problems , narolepsy .. all with little to no result. By 2005 he could no longer work and he has been in a decline since then. I fully believe that his sleep apnea has played a major part in all of this. Even now he reports being tired all day, but rarely sleeps. In 2006 we found a new neurologist who completely ruled out narolepsy. My husband stopped having energy several years ago and now with his memory loss and inability to concentrate..he has so little to do to fill his time....
Bad enough getting the AD LO to sleep at all much less with a mask. do yours sleep with it even now with AD? i can get him to leave a bandaide on for 30sec much less a mask. i wouldnt even try at this point.
My husband has sleep apnea and restless leg syndrome. He has always refused to sleep with the mask. His sleep apnea and rls were diagnosed 2 years before AD was diagnosed. Interesting the correlations we find here.
Sometimes I check him during the night when he doesn't seem to be breathing and I nudge him, he takes a deep breath and I sigh a sigh of relief.
Joan.... Your description of EOAD , in our case is spot on in the fact that DW was in her mid 50s when in 1999 her first signs where noticable... Here we are 9 years later and she still feeds herself ( I have to prepare it ) bathrooms with some issues and has fair speech...( I do help with showers and dressing ) Also in my estimation she is in stage 6......... But one never knows,, tomorrow,next week or next month,, It all can change drasticly
JudithKB, I believe the 20 life span is from the beginning of the disease process. Most people have had it quite a while before diagnosis, it is not usually 20 years after diagnosis. None that I am aware of anyway.
My husband was in stage 5 of the disease before he was diagnosed and I was even aware of it as he was always a very quite person anyway. He is now in stage 7 and we are in the 8th year. He probably had it much longer we just did not know it.
I think the end stages can last anywhere from one to 3 years.
My hand is raised along with many of you about the sleep apnea. My husband's snoring was something our family just took for granted. Then he was tested at some point in the 'testing' phase of trying to find out what was wrong..and was prescribed the Cpap.. Unfortunately, he can't stand to have ANYTHING on his nose and is claustrophobic in that way. It makes sense that apnea or anything that reduced oxygen to the brain, would have an effect. He refused to even try the machine.
My husband was dx'd last October when he was 79. He is till in the early stages as far as I can tell. Other than the AD he is on 10mg lisinopril for slightly elevated BP a full dose aspirin to prevent strokes (we hope) and 10mg Aricept at night. I am on more medicine than he is and am 11 years younger so who knows how long either of us has.
I am raising my hand also with my AH having sleep apnea and wearing a cpap machine for years. He doesn't' wear it anymore though, can't remember to keep it on. He was diagnosed at age 43, 9 years ago, but I noticed signs at least a year before that. I would guess he is in stage 6 now. His younger sister was recently diagnosed and is also in stage 5-6, but she was never on meds like my AH has been for the 9 years.
No, it is not a coincidence. There is probably Familial Early Onset Alzheimer's Disease in your husband's family. For more information, copy and paste this link - http://www.medterms.com/script/main/art.asp?articlekey=22931
Also, go to the top of this page, click "search", and put in "Trish" and click "comments." Then you can do the same with the name "Tony". Both of them are dealing with Familial EOAD, and you can read their comments. You can also go to the home page of the website - www.thealzheimerspouse.com- and on the left side, click the topic, EOAD - there are articles and a video about Trish's husband and family.
My husband also had sleep apnea. I wonder if there is a connection between Alz and sleep apnea?? There is so many of you that have experianced the same thing.
i dont think theres any doubt personally. we dont have to be a rocket scientist to see that oxygen deprived brain cells are dying every time they fail to exhale on time. this is something i hope has more investigation and SOON. THOUSANDS of people, men and women suffer this way of breathing. gosh. and what if its just 'snoring' in general as well? gosh.
Sleep apnea was one of the first things diagnosed in my husband. Actually, the doctor told me that once he was on the Bi-Pap machine, his memory should improve. My theory is that his sleep apnea was so severe that he had done too much damage to make that turn around that the doctor thought would happen. They rate them on a scale from 4 to 20. With 20 being the highest degree. My husband is a 20. The Bi-Pap has so much pressure that it has to give them a break so they can exhale. The C-Pap is a continuous blast.
It was memory problems that led me to get him to a doctor to begin with. It still took two years for them to diagnose him with AD.
My husband has had restless legs since he was a child. When we met 12 years ago I urged him to get a sleep study and he began taking meds to keep him from jerking all nite long. He had a lot more energy and stayed awake during the day. But last year when I started noting memory and thinking problems, I asked him to go back to the sleep MD because he was stopping breathing. Eventually he was diagnosed with severe sleep apnea AND narcolepsy about the same time that he started Aricept. He is MCI, not AD yet. But I've thought it all seemed very related and it definitely all hit in a significant way about the same time.
My DH Neuro did explain to us that people with Sleep Apnea, and a familial history of AD probably have the EPO4 genetic marker for AD. Has anyone else received that information? My DH has had sleep apnea his whole life. Used to tell me stories of how he fell asleep while marching in the military. One time he fell asleep while driving a motorcycle............with me on the back! That was 33 years ago and I've been doing most of the driving ever since! He has been on CPAP for 10 years. Life got much better for us after that machine. So I do believe there is a connection.
MissB, I am somewhat alarmed. On the thread you began, Husband wants to work, you simply stated your husband was getting lost. Now you say there's a chance of him falling asleep at the wheel. You should be doing ALL the driving at this point. If anyone disagrees with me, please let it be heard.
I got a chuckle out of that. Since he has been on CPAP he doesn't fall asleep anymore during the day. He doesn't drive at night (hasn't for 10 years) so I don't ahve to worry about that any more. He drives fine now...........just got lost 3 times in the past year.
Oh, what a relief! I didn't know what CPAP was. Glad you got a laugh though. :-) I just watched the funny animal videos on Joan's Blog. I got my laugh from those. Check them out.
Just an afterthought, don't count on him remembering to take his meds. Follow behind him to make sure he does! Things I took for granted that my husband would remember, & then too late, I found out that he didn't with severe consequences.
My husband also believes he can drive. I had to ask his eye doctor to tell him he didn't see well enough. I also tell DH that I need the practice and he should tell me what to do. Talk about stress. Anyway, it got him off the road. The other day, however, he insisted on driving home from long island. I had my heart in my mouth the whole trip, praying a cop would stop us for crossing 3 lanes of traffic at 80 miles an hour in a 65. Funny, since that day, he has not asked to drive again. I think he got frightened, I certainly did. and I told him that the law says once you are dx with AD, you are no longer allowed to drive. I made that up, but I told him they would not only take his license but also fine him heavily, and we wouldn't be covered by insurance. We'll see how long he remembers that.