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MCI progression to Alz or another dementia
SBL83
Posted: Saturday, September 10, 2016 5:30 PM
Joined: 5/15/2016
Posts: 157


My husband is 63 and diagnosed with MCI, diabetes, sleep apnea etc.  I am curious if any of you , who have progressed to an official diagnosis of Alz. Or early onset Alz or Lewey Body dementia etc, were first given a diagnosis of MCI.
Thanks ,
SBL83

jfkoc
Posted: Saturday, September 10, 2016 7:00 PM
Joined: 12/4/2011
Posts: 14414


My husband's first diagnosis was MCI. It was several years later that it changed to Parkinson's and then less than two years before he died LBD entered the diagnosis.

Over all I can say that there was a problem going back as far as 2003. The MCI diagnosis was 2008, Parkinson's (he had many of the non-motor symptoms) around 2012. 

Hope that is a helpful answer.


TayB4
Posted: Saturday, September 10, 2016 8:29 PM
Joined: 8/8/2014
Posts: 692


My 49 year old husband was diagnosed in 2012 with sleep apnea. He was diagnosed with MCI in 2014. Two weeks ago he was diagnosed with Early Onset Alzheimer's. He has no other medical conditions. He was laid off from his job as part of a major restructuring. After that he was let go from four different jobs until he got the diagnosis of MCI. He applied for SSDI and was denied. He appealed and was approved. 

Regarding your other post about your husband's apathy and inability to complete tasks, my husband was exactly the same way. Many days he still is. Sometimes he will have a day where he seems to have a burst of energy and he can get things done. He was put on Aricept after the diagnosis of MCI. That has seemed to have helped his mood and his ability to initiate activities. 


SBL83
Posted: Saturday, September 10, 2016 9:35 PM
Joined: 5/15/2016
Posts: 157


Thank you jfkoc!   That is helpful, and helpful to see a progression scenario.  I know everyone is different,but still, that helps. 

I too see problems or symptoms or whatever that go back for years and years.

I am sorry for your loss

Thank you


Iris L.
Posted: Saturday, September 10, 2016 9:38 PM
Joined: 12/15/2011
Posts: 15195


My diagnosis was cognitive impairment not otherwise specified, eight years ago, although the neurologist now has listed MCI as my dx.  I posted a thread about my seven years' experience with Exelon patch and Namenda, if you would like to read it.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147526593



At first I was hesitant to begin Exelon patch, but finally gave in because I was having so much trouble and I hoped to delay progression.  All doctors and other professionals will tell you that there is nothing that will delay progression.  But I don't believe this is so.  I believe that there are so many risk factors, that it behooves us patients to become pro-active in our own care, and do whatever it takes, because there can be a positive response.  This is why I call us Dementia Pioneers.


I also believe that it is necessary to begin treatment EARLY.  I think most patients begin Aricept or Exelon patch too late, that is why the responses are not as good for most patients as for myself.


I feel pretty good now, although I still have moments when the memory loss and executive function problems pop up, so I know that I am not cured.  If I forget my medications, I can tell the difference within two days.  I am plateauing via my medications and Best Practices and by the grace of God.  As far as I know, this board is the only place that promotes Best Practices consistently.  

 

Diabetes is a big risk factor for AD.  Keep the blood sugars under control.  Focus on diet and exercise.  Tight control with medications has been shown not to be as helpful for older diabetics.  You can google medical articles about this.


If your husband is so symptomatic that his daily life is affected, then this is significant. Doctors are reluctant to diagnose AD in younger patients.   The line between MCI and AD is not sharp.  It will not be like, one day he has MCI, then the next day he has AD.  If he is symptomatic, early treatment may forestall progression.  This is the important point to focus on.


Iris L.

 


 





SBL83
Posted: Saturday, September 10, 2016 9:45 PM
Joined: 5/15/2016
Posts: 157


Thank you TayB4,

That is helpful information.  It is so hard in the "MCI" stage, when some days seem so normal, and most ppl who are around him, would not notice a problem.  Those of us close to him notice though, and some days are definitely worse than others.

My husband is like yours too in that, every once in a while he gets that burst of energy and accomplishes a lot.  It's getting more rare, but occasionally still happens.

How did they determine your husband now has early onset?  We will hopefully be getting a glucose PET scan later this fall, and that may shed some light.  Meanwhile, I wish they would put him on Aricpet.  His neurologist doesn't want to do it while the diagnosis is still MCI, but the primary care doctor wants him on it, and so do I!

Thanks for your help!

SBL83


Michael Ellenbogen
Posted: Sunday, September 11, 2016 7:10 AM
Joined: 11/30/2011
Posts: 1961


 Something to also keep in mind is there are people who reach MCI that do not get worse. If you take Aricept and it helps then it most likely will be AD.  The PET will help to point them in the right direction but don’t look for miracles. It’s all a guessing game.


TayB4
Posted: Sunday, September 11, 2016 1:13 PM
Joined: 8/8/2014
Posts: 692


SBL83,

My husband was diagnosed both times after the multi-hour neuropsych exam. This was after having an EEG, MRI, and blood work two years ago to rule out other conditions. His neurologist began him on Aricept immediately. I think that has been key for his daily functioning. He also tried Namenda, because they work well together, but it gave him bad side effects. He also takes a multi-vitamin , B12, and omega -3.  


alz+
Posted: Monday, September 12, 2016 5:51 AM
Joined: 9/12/2013
Posts: 3093


I had cognitive issues for 15+ years before I was diagnosed with younger onset ALZ.

The neurologist who diagnosed me used Aricept as a confirmation as it does not help other dementias (I think).

It was like rocket fuel to me but turned quickly to nightmares, spasms and most obviously large brown plaques appeared on my skin.  A GP said they were "old age marks".

I quit the Aricept and struggled - much of my distress was because my husband did not know how to handle my inertia or fear and anxiety.

eventually I started natural means to combat alzand am doing much better than 5 years ago.

each of us has to figure out what helps/what hurts and make our own way. 

hope he can come to boards and share in the knowledge and help us all learn how to get through this gracefully.


SBL83
Posted: Tuesday, September 13, 2016 4:44 AM
Joined: 5/15/2016
Posts: 157


Thank you all very much for your responses.  Each and every one is very helpful.  I can definitely relate myself and my husband to everything you all are saying.  My husband has never liked technology, but I would love to be able to get him to get on these boards.  I will continue to work on that.  

Everything you all are saying makes sense. I wish I could respond to each one, but I'm running short on time this morning.  I just wanted to make sure and say thank you for all of the help.  I'll be back on soon.  

Blessings and patience and good luck to all of you.

Thanks you,

SBL83


The_Sun_Still_Rises
Posted: Wednesday, September 14, 2016 10:25 AM
Joined: 7/24/2015
Posts: 3029


For help bring clear some things this confusion. 

Alz is always progressive...it starts real simply, and continues progressing.  IF the person is dx'd early, however, they will unfortunately only get the dx...MCI...but as it progresses, later on, it will become apparent that it was always ALZ all along. 

Some other people, for reasons no one knows yet, just have MCI...this is no progressive.  It is not Alz...it just shares some of the similarities beginning of Alz.  But will no progress, and is no fatal. 

So that we can understand why two very different disease processes EVER share the same name...you have understand HOW it is dx'd.  It is dx'd purely thru a function test...which is a spectrum test.  Normal people test within a certain end of the spectrum...as some impairment is evidenced, the spectrum start sliding...

When the spectrum has slid some...that when they say MCI...you are mildly cognitively impaired AT THIS TIME.  It no a disease, per se...but rather a SYMPTOM.  The symptom being, you mildly cognitively impaired...for reasons no one knows, and very few care explore WHY.

In early stages Alz.... (aka EARLY ONSET ALZ...no be confused YOUNG ONSET (young onset IS Alz proper...just at an age younger than 65, where as early onset is in the beginning of)...it would be an MCI diagnosis. 

So...the big question...HOW would one KNOW (when given dx MCI) whether they just have MCI or whether they have Alz????  That is the big question...the most simplest answer is this...IS IT PROGRESSING????  Is there decline over the year???  If no...then it likely JUST MCI...which, thank goodness, since no one want be given a death sentence.

If, however, he progressing...well, then you can be fairly certain it no just MCI, and that you in early stages dementia. 

Hope that helps break it down in way that, again, hopefully, can make sense everyone.

<3


SBL83
Posted: Wednesday, September 14, 2016 4:40 PM
Joined: 5/15/2016
Posts: 157


The-Sun-still Rises,

Thank you for your response.  I think that's a very good explanation.  I have known what to look out for for a while, but the problem is knowing if any possible progression that I see is the progression to Alz or another dementia or is it because he had worked in the financial corporate world for over 40 years and suddenly he is out on early retirement/disability due to several health issues and the results of the neuropsych test etc.   Now he suddenly has been home the last 10 months, feeling bad physically and cognitively and "in a fog" as he describes etc.  

Is the possible progression I see from the disease or from the lack of  using his brain very much, less daily interaction with others(of course he is around ppl, but not like when he was at work) etc.?

It's all a wait and see I guess.  He has had so many tests the last few months.  The one test we need the most, the glucose PET scan , is taking a ridiculous amount of time. I hope when he finally gets it, we have more answers.  Meanwhile, I think the doctor should have him on Aricept.  Again, thank you for your answer.

SBL83

 

Thank you 


Iris L.
Posted: Wednesday, September 14, 2016 6:58 PM
Joined: 12/15/2011
Posts: 15195


SBL83 wrote:
 

 

Is the possible progression I see from the disease or from the lack of  using his brain very much, less daily interaction with others(of course he is around ppl, but not like when he was at work) etc.?

 

 

 

This is the $64,000 question.  Neurologists would probably say that progression is from the disease.  But we on this board believe that actively using our brains and being engaged socially, along with the other factors of Best Practices, will delay progression.  This is what we believe and hope for and work on every day.  This is what I do.


Iris L.



Mimi S.
Posted: Wednesday, September 14, 2016 7:07 PM
Joined: 11/29/2011
Posts: 6162


And more and more research is proving our gut reaction correct re Best Practices
SBL83
Posted: Wednesday, September 14, 2016 7:38 PM
Joined: 5/15/2016
Posts: 157


Iris and Mimi S,

I would agree that the more you use your brain and stay involved and interact with others etc would definitely help.  I see such a difference when he is active.  I have to figure out how to get him to do more of all of that.  I know he feels sluggish from the sleep apnea , diabetes etc., but he HAS got to try harder.

Thanks!

SBL83


llee08032
Posted: Monday, September 19, 2016 8:36 PM
Joined: 5/20/2014
Posts: 4196


SBL,

He may be doing the best he can and already trying his hardest. It's hard for persons w/o impairment to tell whether or not the person is really trying. Some days are just better than others. My theory is that we tire easily because it takes so much energy and work trying to use our brains. 


HistoryGeek
Posted: Tuesday, September 20, 2016 12:41 PM
Joined: 6/16/2016
Posts: 33


A lot of the problem for me at least, is that I sometimes feel useless and not an asset to society. Just a burden for all concerned. I am on full disability due to MCI, luckily I was able to get that before termination. I don't mean to be a downer but for me it has been difficult. Not working has destroyed my self worth. I am now left to try and take care of the house as my son is at school and wife is at work which is demoralizing. Things have gotten a bit worse along the way, leaving the burner on all night, leaving the stove on. Having to have people follow behind me to see that I don't blow up or burn the house down is a bit demoralizing, although I know it needs to be done. My close friends know what is going in and a supportive which helps. I can still drive at this point although often times I am just to depressed to venture out. I don't want to embarrass myself. For instance one of my tasks is to pick up my family's prescriptions, I am asked for address,  date of birth for my son or daughter etc. This is when the beads of sweat start to form on my forehead. It usually takes me a couple tries to get the information right. I am now working on getting social security and hope that this comes through so that at least I know that I have done all that I can do to take care of my wife and children. I am 47 by the way. I just wanted to give you some insight as to what your husband may be going through, although everyone is different.  Please hang in there. Sometimes I know I can drive my wife a little crazy!
SBL83
Posted: Tuesday, September 20, 2016 7:08 PM
Joined: 5/15/2016
Posts: 157


llee08032, May G, and History Geek,

Thanks for your input.  I agree that sometimes he is really doing the best he can, and that it doesn't take much to stress and tire out his brain..  I think part of my frustration is his lack of willingness to do some things that would make life better for him.  For instance, the doctor has said that it would be better for me to manage his medicines.  He takes Meds for his diabetes, neuropathy, cholestoral, high blood pressure etc. etc.  He frequently forgets, and we have ended up in the ER and hospital from such mistakes.  A simple solution would be for him to allow me to be in charge.  I'm not trying to "micromanage", I'm trying to prevent life threatening situations, and to do whatever I can to help him feel better.

 I do try to do whatever I can to reduce stress, and getting away from the horribly stressful work environment he was in has helped.  That being said, I do think he misses the interaction with clients.  He was wonderful to his clients and received much praise, and it made him feel worthwhile.  History Geek mentioned that he does not feel worthwhile right now, and I'm sure my husband feels that way at times.  History Geek, Im sure your wife and son appreciate all that you do and try to do for them, so please don't feel useless.  I'm sure your wife just wants to make things better for you, as do I for my husband.  I hope that you will get involved in volunteering or something to keep you engaged.  I'm sure there are plenty of things you do really well that would make you feel better about things.  I know it's hard when you feel embarrassed when you forget things, but I'd be willing to bet you notice it more than those around you.    Don't ever feel worthless.  You are a parent and husband doing the best you can, and therefore, you are not worthless

As May G said, keeping her husband involved and active helps him a lot.  I know that when my husband does get out and is around others, he feels and acts rejuvenated.  There are many who are around him who dont know about his MCI.  May mentioned she does all the planning and takes care of as much as possible.  I try to do that too, but he is resistant to me taking care of certain things because he thinks he can and should still do them.  I admire that he wants to try, but it does lead to a lot of frustration on my part, when he forgets and when I have to tell him over and over to do things.  

I do think as May and so many mention on these boards, it is so important to stay active, mentally and physically, and to reduce stress etc.  I have a wonderful husband, but as I tell him, he has to help me help him by being compliant with the things we know will help!

His appointment with UVA is finally getting closer.  We have waited 5 months.  We go in mid-October, and I really hope they will schedule the glucose pet scan.  We have all the other testing  complete.  We need the pet scan as the final piece to hopefully provide more definite answers about progression etc.

Thank you all for you comments.  

Best Wishes to all!

SBL 83


llee08032
Posted: Tuesday, September 20, 2016 10:14 PM
Joined: 5/20/2014
Posts: 4196


Historygeek,

It might be best to write a list of the birthdates and keep them in your wallet. Your not any less of a person now than you were before. It sounds like you're being really hard on yourself? Have you spoken to the Dr about the depression? Are you doing things that you enjoy doing? Struggling and coming to terms with and acceptance of diagnosis is difficult. Sometimes we have to re-purpose and re-create our lives and find new things to give us a purpose. 


The_Sun_Still_Rises
Posted: Wednesday, September 21, 2016 6:45 AM
Joined: 7/24/2015
Posts: 3029


In follow up...

I think there a huge difference between brain-fog (which is likely from dietary issues, like eating wheat); and actual progression. 

And yes, it can be hard for outsiders to guage and judge.

Dementia progression is usually marked by LOSS OF ABILITY DO TASKS.  So, if he used be able set out his medication...and now can't figure it out, although is struggling with it.  Or when we can suddenly no longer figure out how put our clothes on.

There is also a funny phenomenom...where people, aware of the issue, sort of LIVE INTO IT.  In other words, appear become worse...but that this is purely psychological. 

As we age, it is normal to become sketchy on certain details...and I think this is a poor mark of outsiders judging us.  It can also be a sign other things are filling one's mind. Most non-dementia people forget dates, forget appointments, and misplace things, etc.....that does not mean they have dementia.  If that makes sense.

It also, generally, does not progress very quickly...but rather is more marked by years. 

Most of us can do relatively ok on our own...especially with cues and supports...until the time when we start having trouble getting ourselves dressed, going the bathroom, and eating.

One of the greatest loses most of us complain of, is our loss of how others view us...as if we are suddenly broken in other people's minds...or, already gone...or, people look at us and become sad. 

If it Alz or other dementia (it really doesn't matter which since outcome same)...it will show itself eventually, undeniably.  And, the standard is to take a second neuropsych in a year or two and see.  If he stays relatively the same...then it likely MCI.  If there a big difference...then you know. 

Hope that helps.

<3


SBL83
Posted: Thursday, September 22, 2016 5:59 PM
Joined: 5/15/2016
Posts: 157


The Sun Still Rises,

Thank you for your insightful response.  When you speak of PWD "living into it", I know what you mean, and that is something I'm trying to keep my husband from doing.   For example, if he thinks he can no longer do something  anymore, then chances are , he doesn't try as hard and therefore can't do it.  This is one reason I am hoping we get more definitive answers soon.  If he thinks he is progressing and there is no chance of maintaining or improving his current cognitive etc ability, he will not try as many things or venture out as much as he will if he is told he may never get worse.

 

I do think he is progressing in some ways, and maintaining in others.  It will be interesting to see the results of the PET scan when we finally get it, as well as the results of the 2nd  neuropsych. test, which will probably be done in a few months.

Thank you!

SBL


Iris L.
Posted: Thursday, September 22, 2016 9:45 PM
Joined: 12/15/2011
Posts: 15195


SBL, you have to be careful with test results and professionals.  They will want to cover their bases and not want to give what they deem to be false hope, so they don't give any hope at all.  The professional talking point is that the dementias are a straight path to death, and there is no way around that.  If I believed that, I would not be here.  


I have learned to take the test results and what the doctors tell me with a grain of salt.  Yes, we need medical information.  But we need to know how to apply it.  No professional has told me how iron affects my cognition, although it is well know that low iron levels affect children's learning.  No one is looking into the effects of low iron levels in the cognition of older adults.  I had to learn how to apply this information myself.


As Dementia Pioneers, PWDs must become PRO-ACTIVE!  We can't leave our futures solely to the professionals, if we want results.  We have to apply what we learn.  We have to step out of the dementia box, otherwise, we will be on a one-way train to dementia world.


Iris L.


 
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