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Life expectancy and rate of progression
Abuela
Posted: Friday, August 31, 2012 3:16 PM
Joined: 6/24/2012
Posts: 605


Hi all.  I have been wrestling with this question from my husband.  We have both heard that early onset can progress rapidly and end a life early.  

I have also read that it just appears that way because a young person suddenly becomes more severe and dies early and it would not seem the same with an older onset because the older person is more frail anyway.  

Anyone know where I could look for info about this?  


Ron
Posted: Friday, August 31, 2012 4:26 PM
Joined: 12/5/2011
Posts: 17


Abuela

I cannot answer your question, but I can tell you what I do know. Five years ago at age 55 I was told I had AD and I was asking this same question. Still do not know the answer, but I can tell you that while it is progressing I am still doing great. I am trying to make the most out of all the time I have and AD is not going to rob me of that. Do not spend to much time worrying about what you do not know and what they can not tell you and enjoy to the fullest what you do have.  God bless and comfort you.  Ron


Myriam
Posted: Friday, August 31, 2012 6:09 PM
Joined: 12/6/2011
Posts: 3326


Abuela, looking back, we saw symptoms that my father had AD in his mid 40's (very forgetful and got lost driving), but it became evident when he was 49 after he attended his mother's funeral in Puerto Rico. When he returned home, he kept telling my Mom that he had to get home. She would tell him "you are home", and he would look around and say "oh, yes", but then he would again say "I've got to get home". 

 

He died when he was 62 because my mother would not allow the VA doctors to stop all heroic measures to keep him alive, otherwise, he probably would have died at 60 or 61. So he lasted from 13 to 17 years, depending on the dates chosen.     

 


Iris L.
Posted: Sunday, September 2, 2012 1:28 PM
Joined: 12/15/2011
Posts: 18362


Abuela, I've been dealing with severe memory loss since I was age 37.  I am now 62.  I began memory medications (Exelon patch and Nameda) three years ago at age 59.  My diagnosis is not AD, but cognitive impairment nos.  I have AD in my extended family, so the risk is there.

Like Ron, I don't wonder about what I can't ever know the answer to.  My Mom developed lung cancer and we don't have a family history of cancer, so we never expected her to have any cancer.  But things happen.

It's best to get on medication and practice Best Practices, make your legal and financial preparations, and go live your life to the fullest.  That's all anyone can expect.

A friend of mine and I used to talk about how we were happy that we had done so much in our younger years so that we would not have regrets when we got older.  She passed away unexpectedly in her mid-fifties in 2001 from sarcoidosis, a lung disease.  I have to remind myself often of what we talked about.  I have no regrets but there are things that I want to put on my bucket list.

I feel like I am stuck in my life now, not because of dementia, but because of depression.  I've been struggling with depression for the past two years and it is keeping me from doing what I want to do.  This depression began when a geriatrician told me that I had dementia, even though the neurologist's diagnosis was not dementia, but impairment.  I've struggle with these definitions. 

I finally came to the conclusion, after reading many posts on these boards, that the definitions don't make a difference in my life.  I've got to get on with my life because none of us know how much time we have left.  Why waste the time I have left fearing dementia?  That would be a big regret for me, because there are still many things I can do and want to do.

Iris L.

Lisa428
Posted: Sunday, September 2, 2012 1:47 PM
Joined: 12/5/2011
Posts: 795


Dear Aduebla,

 

I do know what you are talking about.  Some people with AD/Dementia decline very rapidly.  I know this because I lost 3 young people in our Early Stage Support group.

 

It scared me at first. Then, I decided that no one knows how much time they have left on this earth!! 

 

I have now decided that it really doesn't matter how much time I have left as long as I make the best of it.  Live and enjoy my life and the people I love.  Take my meds, participate in a drug study to help others, and use Best Practices.

 

I have been very blessed in this life.  I have a great family and friends who care and love me.  I want to make them proud.  I will fight and not give up.

 

Good Luck to you.  Please, keep posting.

 

By the way I have EOAD.  I was diagnosed @53.  I am now 58.

 

Peace and hope,

Lisa

 


Abuela
Posted: Sunday, September 2, 2012 7:41 PM
Joined: 6/24/2012
Posts: 605


Thanks for all of your input.   I feel similarly that we just don't know and why spend precious time worrying about it.  Also I have always asked why things happened early in my life.  So now maybe I know.  It is so that I have no regrets.  Moving forward in whatever direction life takes me.  All part of the journey.  

Thanks again.

 


egore79606
Posted: Sunday, September 16, 2012 10:29 AM
Joined: 9/15/2012
Posts: 1


Hello,

    I am the newbie here.

I was diagnosed at 49.

I started before that age, but delayed doctor visits like most men.

I am now 59 and just barely entered second stage...

I just now started to worry about how much time i have left.

I guess i was blessed having a photographic memory and so many gifts that made me progress slower?

I actually stopped taking all my medication for about three years... Mistake!!

That is most likely one of my biggest mistake as i progressed rather rapidly over the past year and a half resulting in me taking more med's now...

I have noticed improvement after adding the Namenda and pure coconut oil to my daily routine.

I also noticed a drastic change in my day if i miss my morning med's.

MY Symtomology is increasing, however 10 years in one stage i feel is a blessing, and I believe if i had stayed on my medication I might not have put myself in this position.

I have heard and read that there are different Interpretations of what stages there are and even what those are...

It appears that depression is on the list for everyone...

I pray each day that today is not my last day before i fall further down the Rabbit hole...

I started a blog a few months ago and use it to share my days, my discoveries and use it to vent some days.

If you all would like the address let me know..

If nothing else it would be entertainment ...

 

 


Myriam
Posted: Sunday, September 16, 2012 10:59 AM
Joined: 12/6/2011
Posts: 3326


Hi, Frank. So good you joined us! I spent a lot of my life as an Army brat, then Army wife. It took me to many places. I'm in between stages 2 and 3 in the 1 - 8 stage measurement. Meds (Namenda and Exelon) have kept me there for the last 3 years. Many of us follow best practices, too: Mediterranean Diet, strenuous exercise, staying socially active, taking meds as directed, and exercising the mind.


Consider creating a new post/message. You responded to an old post and I'm concerned others on this Board might miss your post.


Iris L.
Posted: Sunday, September 16, 2012 12:22 PM
Joined: 12/15/2011
Posts: 18362


egore79606 wrote:

I guess i was blessed having a photographic memory and so many gifts that made me progress slower?

 


Welcome to our online support group, Frank.  Apparently you have a large cognitive reserve which has helped you function better.

It has been noted that patients decline when they go off meds.  Were you advised to go off your meds or was that your own decision?

Do you have any questions?  Please write back and let us know how we can help you.  Please feel free to begin your own thread by clicking on "Add Topic" on the Younger Onset AD main page.

Iris L.


eaglemom
Posted: Sunday, September 16, 2012 1:36 PM
Joined: 3/7/2012
Posts: 2762


When all of this started happening to DH was sat down together and prayed - prayed for strength / patience / acceptance and a long life together.  Since we are youngish (55) that seemed approporate.  Then we quickly realized we needed to be thankful for each day - of which we are.  We are enjoying each other, a small amount of traveling and just being together. 

 

If anyone would have told us years ago at 54 DH woulldn't be working and essentially he'd be retired we would have laughed.  Well here we are.  Its so much easier to accept and go on rather than fight it - IMO.  eagle


Iris L.
Posted: Sunday, September 16, 2012 5:00 PM
Joined: 12/15/2011
Posts: 18362


eaglemom wrote:

  Then we quickly realized we needed to be thankful for each day -


Wise words!

Iris L.

Abuela
Posted: Monday, September 17, 2012 7:18 PM
Joined: 6/24/2012
Posts: 605


All of your advice has been welcome.  I have tried to put it out of my mind and just live life.  It helped to tell our kids and have it out in the open. Some days I don't even think about it.  

I see the things that I do each day that are screwed up, but I am much more patient with myself about them.  

I don't know how long I have been in this stage, but I think not long.  Maybe 2 or three years.  I keep thinking that if ignore it, it will ignore me.   But that goes away when I see yet another thing that happens.  

Thanks for the continued support through these boards.

 


John50
Posted: Tuesday, September 18, 2012 1:53 PM
Joined: 3/14/2012
Posts: 140


 The problem here is no matter what you read anywhere everyone is different so while they can quote scientific data about rates that doesn't mean that is how it will go for him! I am diagnosed with atypical early onset and mine is one of the genetic links they haven't discovered yet and it quite different and slower in progression than most, this just goes to prove there is no answer for your question. Even though the doctors know from 2 PET scans 18 months apart that my progression is slow they can not tell me anything about life expectancy. My father had the same thing and lived until just short of his 81st birthday, albeit with poor quality of life the last 8-10 years but still that would have defied all predictions anyone willing to be foolish enough to predict such things would have said.
 Abuela wrote:

Hi all.  I have been wrestling with this question from my husband.  We have both heard that early onset can progress rapidly and end a life early.  

I have also read that it just appears that way because a young person suddenly becomes more severe and dies early and it would not seem the same with an older onset because the older person is more frail anyway.  

Anyone know where I could look for info about this?  



Iris L.
Posted: Tuesday, September 18, 2012 4:01 PM
Joined: 12/15/2011
Posts: 18362


Keep reading and keep posting, Abuela!

Keep your mind active and stimulated!

Are you following Best Practices?  They really do help keep us in the early stages!

Iris L.


Abuela
Posted: Tuesday, September 18, 2012 6:44 PM
Joined: 6/24/2012
Posts: 605


Thanks John.  I realize that what you are saying is just true.  There is no pattern and no time frames. I just have to let it take its course and hope that I have lots of time in the early stage.  

I am retiring and trying to think of what I can do/work at that I can't screw up.  

It's hard to make those plans.  But I have a few ideas.

And thanks Iris, I run and work out everyday, I speak/teach Spanish and I have a healthy diet.  doc says I don't need meds yet.  

It's very true though that when you are overworked or stressed... the symptoms are worse.  Glad that I have only 2 weeks left.  I found one day that after writing lesson plans for "wednesday" I moved a paper and found lesson plans for "wed" already written.  I had no memory of writing them at all.  Don't know if I did it 10 mins earlier or two days earlier.  So I just looked at both sets of plans and decided which one was the most complete and tossed the other.  Gotta laugh.  Not a bad problem to have!  Still, it can be freaky to experience.

 

 


Iris L.
Posted: Tuesday, September 18, 2012 7:29 PM
Joined: 12/15/2011
Posts: 18362


Abuela wrote:

  doc says I don't need meds yet.  

 

 


Dear Abuela, You have indicated that you need to retire because you can't perform the functions of your teaching job.  You are very uncomfortable about these last remaining days because you are having a hard time performing.

Can you tell me at what point your doctor thinks that you will need medications?
What criteria will he be using?

The memory medications act to help patients function better in everyday life.  I noticed a great deal of improvment when I began my medications three years ago.  I was close to being unable to live independently until I began my medications.

The medications are not a cure but they do help.

Iris L


Mimi S.
Posted: Tuesday, September 18, 2012 7:39 PM
Joined: 11/29/2011
Posts: 7027


DEAR ABUELA,

ARE YOU DIAGNOSED WITH MCI OR EARLY STAGE DEMENTIA? IF MCI, YOU ARE APPARENTLY NEAR THE UPPER LIMIT AND MEDS SHOULD BE CONSIDERED.

I HAVE YET TO HEAR OF A DEMENTIA SPECIALIST WHO DOES NOT ORDER MEDS FOR EARLY STAGE. 

IF THIS IS THE CASE WITH YOUR DOCTOR, PERHAPS YOU NEED A SECOND OPINION OR A NEW DOCTOR.

HOW MANY MORE DAYS?


John50
Posted: Tuesday, September 18, 2012 11:03 PM
Joined: 3/14/2012
Posts: 140


 
 You are most welcome. I probably misunderstood at first who was diagnosed maybe? Not unusual with the disease anymore I am afraid to admit but it is what it is, what I like to say to remind myself that I can't change that part but I CAN stay positive, concentrate on the things I can still do and try to make a contribution by effort to what matters to me, in my case I try to help the cause of the disease however I can. I see this as the single most important thing I can do and it really isn't too demanding because after all I am not required to do anything and do have to not do some things I thought I could at times but that is OK too. Just don't be hard on yourself, easier said than done for me but I try. You should do whatever you take pleasure from and doesn't stress you too much, that is my opinion but others may have different ones. It can be small things or larger but just don't take on more than is realistic, give yourself a break! Take care and I wish you the best. Keep coming back and letting us know how you are doing!!
 Abuela wrote:

Thanks John.  I realize that what you are saying is just true.  There is no pattern and no time frames. I just have to let it take its course and hope that I have lots of time in the early stage.  

I am retiring and trying to think of what I can do/work at that I can't screw up.  

It's hard to make those plans.  But I have a few ideas.

And thanks Iris, I run and work out everyday, I speak/teach Spanish and I have a healthy diet.  doc says I don't need meds yet.  

It's very true though that when you are overworked or stressed... the symptoms are worse.  Glad that I have only 2 weeks left.  I found one day that after writing lesson plans for "wednesday" I moved a paper and found lesson plans for "wed" already written.  I had no memory of writing them at all.  Don't know if I did it 10 mins earlier or two days earlier.  So I just looked at both sets of plans and decided which one was the most complete and tossed the other.  Gotta laugh.  Not a bad problem to have!  Still, it can be freaky to experience.

 

 



Pegcatlady
Posted: Saturday, September 22, 2012 11:04 PM
Joined: 8/28/2012
Posts: 3


I have early onset AL at 61, with Diffuse Lewy Body Disease and am on meds for the Parkinson's rather than AL. One kind of cancels out the other, kind of, had to decide which symptoms were worse.  Jerking and shaking was more annoying than hallucinating and talking to people not there, seeing shadows of dogs and cats running past and seeing little toy boats and trucks and spiders on the walls.  As long as I know it's all normal for this disease I can handle it.  I try to make a joke of it and tell my kids that mom is losing it again!  But sometimes I get scared, need a hug and wish I didn't always have to ask them to understand.  I look pretty ok still but inside my mind is in a turmoil and nothing comes out the way I mean it.  I am very angry and belligerent for no reason, everything bothers me and I try to fix or correct everyone. As you can tell it doesn't make mom #1 to have around . I was told with my LBD that prognosis was 5-12 yrs, usually 7 yrs.  Whoopie!  Just have patience, treat them with kindness, love and most of all respect. You may not want to have to go thru this but believe me we don't either.  Remember them as the vital, beautiful, loving parent or spouse of years ago and treat them as you hope your children will treat you ( they will follow your example).  Much love and best wishes to all those going thru this or helping someone.

Peg

 

 


John50
Posted: Sunday, September 23, 2012 7:51 PM
Joined: 3/14/2012
Posts: 140


Pegcatlady, I hadn't read any of your story before and I am truly sorry that you are going through this horrible journey, I know all too well that it sucks even though my symptoms are different I have been having difficulties this last week that I haven't had before and this year in general has had more noticeable change in a shorter time period than ever so I relate a LOT to what you posted. I feel totally alone sometimes like right now because the world closest to me doesn't understand what I am going through and how scary it is yet I don't want to try to make them feel sorry for me and I often come off like I am in more than control that it feels lately. I am also suffering from a bit of a cold AGAIN because I was around my granddaughter that has one a week ago and I am sure that is why I got a cold back again. It is so darn frustrating that now days even though I sleep longer than I ever have in my life, take vitamins and eat healthier than I ever have I seem to get most things I am exposed to so I am convinced that some of the atypical damage my brain has is also to something that has to do with the immune system. Also, it is common knowledge that when we get sick it hits us harder because we have less reserve so that is so, so hard for me to take right now that I don't really "feel" real sick, nothing like what I do sometimes yet it is obviously making things way worse this week, well at least I keep telling myself that hoping that I will be doing better when the cold goes away but who knows?? I ramble around but then that is normal, sorry. Hang in there and I will try to do the same!
mish
Posted: Monday, September 24, 2012 8:16 AM
Joined: 6/21/2012
Posts: 439


I am 43,  people close to me and myself started seeing a  change/difference in me 2 years ago.  I was told that my writing style started to change when I was writing papers for my C.A.G.S.  When I was dx'd I was angry that I was so young and so close to  getting where I wanted to be and this happened. I did the why me's and the "pink blanket " days. (This is when I was really depressed and stayed home with my favorite pink blanket) I have gotten better with the why me's by thinking that while yes, this does stink, so many people have it worse than me. I don;t know when I will get worse and neither does anyone else -who knows when things will hit you? Life is way too short. I  finally met with the woman from the alz. ass. and was asked to volunteer and speak as someone that has it but "looks" fine. I  absolutely agreed. I figure  yes, I wont be getting my PH.D. and opening my private practice but I can still help people and that made me happy. I still get days when I am depressed, as a matter of fact I just cried reading some of the replies because they touched me. I agree with Iris, that depression does stop me also from doing all I want and I need to get out there more. I hope this group that I am going to start wed. helps.  John, I get  how your immune system gets affected, I always had a low immune system but it seems like I  am tired alot and  if I do something or go somewhere it takes more out  of me. I know I need to exercise my body more but its hard to get going sometimes. I guess I need to just do it.  I pray for all of us and I am so thankful we can be here for each other.  here comes the tears again. 

namaste


nomemo
Posted: Monday, September 24, 2012 10:51 AM
Joined: 3/21/2012
Posts: 439


oh, how i wish i had arms long enough to reach across the country and just gather us all up into a long hug!  even though we're all on a similar journey, it posseses challenges that are unique to each of us and yet some are the same.  that's why this forum is so important...to commeserate with each other, encourage each other and cheer each other on!

 

you're right, mish...when my dr. told me my prognosis (i asked him to)...i then responded to him, "ok, i get it.  but, really, none of us knows what day or time will be ours to leave this earth or under what circumstances.  my next breath might just be celestial air!"  To which he responded, "you're absolutely right". 

 

that being said, i do the best that i can to even just get outside to my neighborhood; visit with the neighbors or my great-niece and great-nephews next door (ages 14, 12 and 6).  or just sitting on the porch, pondering the meaning of life!  : )  shopping with a friend, going to church, visiting with friends (i just had a wonderful evening with friends last evening; there were 7 of us, 4 of whom i haven't seen since the spring).  granted, it was like a bomb went off in my head after a day of over-stimulation, but i wouldn't trade those moments.  will i have days of emotional turmoil and crying? days of not-so-good news from the doctor that send me into a  depression, all wrapped up in my cocoon of a blanket?  sure i will.  but when i think of those other, happier times, I come out of my cocoon just a tad stronger, happier and more encouraged. and I go on.  we all go on.  we have to. 


mish
Posted: Tuesday, September 25, 2012 7:10 AM
Joined: 6/21/2012
Posts: 439


couldn't have said it better my friend.
Abuela
Posted: Tuesday, October 2, 2012 4:59 PM
Joined: 6/24/2012
Posts: 605


I am grateful to all of you.  

I have not been posting much till this week.  Finally retired.

I am having some issues with posting through the message boards or through connections?

I posted some today to update.  I have been reading now for an hour.  Time to cook the burgers and hope that I won't burn myself again.

 


hopeful30
Posted: Wednesday, October 3, 2012 1:34 PM
Joined: 12/31/2011
Posts: 64


Abuela i brot up thes topik while bak and good pepol told me what to do is live all days good we dont no how lonng we r here so just enjoy all days! i hav EOAD for 4 yers now am almos 63 and som thngs r a little not good but  in have ny grandchildrn to mak me laff so all is good! God is smiling on me ever day! wissh u well and remembr to take each day  with joy!!
Abuela
Posted: Thursday, October 4, 2012 6:37 PM
Joined: 6/24/2012
Posts: 605


Could not have said it better!
Kevdcrz
Posted: Friday, October 26, 2012 7:38 PM
Joined: 10/26/2012
Posts: 2


Hello. I am from England. My wife has Lewy Body Alzheimer's from the early age of 51. She can no longer walk although can recall well but gets confused and hallucinates. She always talks about our children's Hamster! Difficult for my daughters who are 19  and 18 yrs. I do push my wife in a wheelchair but its strange its affected her mobility mostly?  She also has Parkinsonian symptoms.
Kevdcrz
Posted: Sunday, November 4, 2012 5:41 AM
Joined: 10/26/2012
Posts: 2


Can anyone tell me about Lewy Body Alzheimer's. My wife has had this for 5 years and she's now aged 57. She often says ' I need to go home now' and I say you are home, but this does not register much. She cannot walk now and is in a wheelchair. She has Parkinsonian symptoms.
Iris L.
Posted: Sunday, November 4, 2012 8:25 PM
Joined: 12/15/2011
Posts: 18362


Welcome, Kevdcrz.  I'm sorry you did not get responses to your earlier post.  Sometimes newcomers get lost when they post at the end of an older thread.

I'm going to repost your introduction into the General Caregiver Board, where you will receive more responses.

Look for "for Kevdcrz".

Here is a link to the Alzheimer's Association's information on Dementia with Lewy Bodies. 
http://www.alz.org/dementia/dementia-with-lewy-bodies-symptoms.asp 

Some of the symptoms are the same as for Alzheimer's disease, and some are more like Parkinson's disease.

There is a book called "A Caregiver's Guide to Lewy Body Dementia" by Helen Buell Whitworth and James Whitworth.  You might be able to find it on amazon.

Many patients have a desire to "go home".  This is very common.  It may mean the patients are desiring to return to a time in their lives when they were safe and well, not necessarily to a specific place.  Ask your wife questions about what her "home" is like.  Ask her how old she is.  Her responses will guide you in how to comfort her.  The best response is the one that gives the most comfort.

Please continue to read the boards and to post your questions.  You are not alone.

Iris L.


Genius1039
Posted: Monday, November 5, 2012 6:54 PM
Joined: 9/28/2012
Posts: 1


Hello everyone, i'm new to all this. I'm 47 was told by doctor i'm earlly on - set alziemer/dementia, progressing fast. Runs on both sides of family. My mom got it at 58yr, 14yrs later she's dying now. Can't say it gets any easier, does'nt. I'm leaving it in Gods hands an thanking him for each day I wake up.
Mimi S.
Posted: Monday, November 5, 2012 7:18 PM
Joined: 11/29/2011
Posts: 7027


Hi Genius,

 

Welcome to our group.

 

If your mom had the disease for fourteen years, that says something about the possibility of your also having a bit of time.

 

And you can work at holding the progress to a slow crawl as soe of us on these boards have done.

We call it "Best Practices" 

1. Take meds as directed. 

2. Exercise your body vigorously 

3. Exercise your mind vigoroously 

4. Mediterranean diet, Omega 3, antioxidants and no smoking.  

5. Increase or maintain your socialization. 


 

Please also check out Lane's remarks on armotherapy. sp?

Keep coming back.

Also go below to Alzheimer's Navigator and wander through it.


 


Iris L.
Posted: Monday, November 5, 2012 8:34 PM
Joined: 12/15/2011
Posts: 18362


Welcome, Genius.  I'm sorry that you have this diagnosis at your young age.  It would not be a bad idea to get a second opinion to be sure, despite your strong family history of early onset AD.

Check out all your medical risk factors and do your best to minimize them.

Join us in following Best Practices as Mimi has outlined above. 

Are you on any memory medications?  They do help you to function better.

Are you still working?  If not, you can apply for SSDI.  The Alzheimer's Association has worked with Social Security to enable patients with a diagnosis of EOAD to be fast-tracked through Compassionate Allowances.

Your Mom has lived 14 years with this.  You don't know how much time you have but you can make your time worth living.  Take hold of your strengths and keep going forward.  We're with you on this board. 

Keep reading and keep posting.  Feel free to begin your own thread when you have a question.

Call the Helpline # (1-800-272-3900) for a new patient packet and information on your local chapter for a support group and local resources.

Iris L.