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Momentary lapses
Andy59
Posted: Sunday, February 5, 2017 4:11 AM
Joined: 12/30/2016
Posts: 75


 Last night, my 27 year old son and I went out for dinner. When the dinner was served, I looked at my knife and fork for about 5 seconds, trying to remember which utensil went in each hand. I knew I had to cut my steak, but was confused on how to do so. Even when I finally had the knife and fork in the correct hand, it still looked funny, but after I started cutting, it was ok. Very strange experience. Reminded me of when my 3 year old granddaughter while we were at a park, asked me to tie her shoe, and I had to pause several seconds before I could remember how to do it.

Life with MCI can be challenging at times. I'm use to constantly losing items in the house. And I know the above incidents  are very minor compared to what most of you deal with daily, but for me, these types of incidents are starting to occur more often and is causing me concerns about my future.

Do you all feel the above is normal for MCI, or more of an indicator of EOAD?
As a reminder, during my 4 hours of Neuropsychological testing this past November  I scored in the bottom percentiles  on 3 of the 4 memory tests, with the fourth one still a failure.

The_Sun_Still_Rises
Posted: Sunday, February 5, 2017 6:58 AM
Joined: 7/24/2015
Posts: 3020


Well I experience that and was dx'd on my neuropsych with "Major Neurocognitive Disorder" which is the new DSM5's term for dementia. 

I would be surprised by anyone who put MCI on a neuropsych after March 2015, as they clearly not keeping up with their credentialing.  If you have MCI, and you fairly recently had the test, it should have scored as "Minor Neurocognative Disorder."

If instead, you doctor dx'd MCI based on you neuropsych (and your neuropsych scored you as major) then it likely you doctor is doing what BlueSkies doctor did...and just giving you the lesser dx UNTIL you second neuropsych.  This is just a guess. 

People with dementia and Alz who go in early in the disease process....will be falsely scored as MCI...because they are early in the disease process.  The difference between true MCI and people early in Alz or dementia....is that those with Alz and dementia will continue progressing where those with MCI will not.  So the biggest tell tale is whether you progressing. 

Although everyone marks the stages differently, and no one really write the stages from our perspective....the 7 stages from what we might experience can be summed up like this:

1 = disease started and you don't notice anything different

2 = you notice a few things but it does not interfere with anything

3 = you notice some things, they don't really interfere daily life....but you now definitely know something is wrong (THIS WILL GET YOU MCI DX)

4 = you notice AND it is now interfering with you daily life and making life hard, and you fell like you could use some help (THIS WILL GET YOU DEMENTIA DX)

5 = others start notice something wrong you, but only if they around you a lot....or long enough, causual observers would not notice...you definitely need help tasks

6 = you have have help everything....getting dressed, going potty

7 = you dying

Hope that helps.

I noticed those lapses early on when I was doing PT....they would tell me do a movement, and I would be clueless what they meant me do...or how make my body do it....BUT....if they made the movement, it was piece of cake.  They even had put it in their notes so all PTs that may work with me would know do that.  I thought it was the weirdest thing.

<3


Andy59
Posted: Sunday, February 5, 2017 7:35 AM
Joined: 12/30/2016
Posts: 75


Thanks Sun. My Neuropsychologist wanted to wait until the next years testing to label me as MCI, even though his report stated my memory test results were "strikingly low", and he noted my other cognitive domains were close to normal. My Neurologist who has 33 years of experience read the same report, and between the report and his own assement, told me I'm clearly cognitively impaired, consistent to what was formally called Amnestic MCI. 

So, who really knows what I should be labeled with. What I do know is my memory and other areas have been going downhill faster than they were one year ago.


BlueSkies
Posted: Sunday, February 5, 2017 8:03 AM
Joined: 2/24/2016
Posts: 1096


Hi Andy 59,  Sounds like you are dealing with same as me.  My neuropsychologist labeled me MCI, probable FTD, but he did state in the report and told me and my husband that had he a second score to compare my results to and could see progression he would be diagnosing moderate to severe dementia. So I go back in September for the second round of neuropsychological tests.  Each time I experience something new it's just a reminder of what is happening and yes it is scary and sad, but we adjust and learn to live with it.  What else can we do?  Hang in there.  Sending you lots of love and hugs.....
The_Sun_Still_Rises
Posted: Sunday, February 5, 2017 8:11 AM
Joined: 7/24/2015
Posts: 3020


In the in between times....you can get all the blood work labs done rule out any other cause of things...you regular GP can do.  It the thyroid panel, B12, Lead, and I can never remember the others.  Also have you doctor go over you meds make sure none them could be causing it. 

<3


BlueSkies
Posted: Sunday, February 5, 2017 8:18 AM
Joined: 2/24/2016
Posts: 1096


Yeah, I had all that done before neuropsychological testing.  Wonder why every doctor does it differently?  Some people have neuropsychological tests first then physical tests. Me they did all physical tests first then neuropsychological.  You think they would all follow the same plan when trying to diagnose.  I guess it doesn't matter as long as it all gets done.
Andy59
Posted: Sunday, February 5, 2017 8:37 AM
Joined: 12/30/2016
Posts: 75


Thanks again Sun, and BlueSkies.

I had all the labs done last October, and a 48 hour in home EEG with video. All were normal.

I see my Neurologist for my 90 day follow up later this month.


obrien4j
Posted: Sunday, February 5, 2017 3:01 PM
Joined: 11/18/2016
Posts: 451


Ok-HELP- what is then Unspecified Neurocognitive Disorder?  And what stage is that, Sun? And I already know the answer to that question.
The_Sun_Still_Rises
Posted: Sunday, February 5, 2017 3:16 PM
Joined: 7/24/2015
Posts: 3020


They should have said "major" or "minor"....but the "unspecified" part means they don't know WHY or WHAT causing it.   Like it could be Alz or FTD or any other cause.  They often give that when it you FIRST neuropsych because you have go do all the blood work in order rule out a deficiency as cause, you have get MRI rule out tumor or stroke as cause.  And if you on any other meds, they probably want you rule out that the meds may be causing. 

The general recommend is get another neuropsych in a year and if it keep show decline....then you know it dementia of some type. 

I am so sorry you guys are all hung up in limbo of the dx process....it really IS a hard place be.  And no one ready or prepared for this dx.

((Hugs))

<3


BillBRNC
Posted: Sunday, February 5, 2017 3:27 PM
Joined: 12/2/2015
Posts: 1018


I can't speak for all doctors or anyone, but it seems to me that many if not most doctors will go to almost any length to avoid diagnosing a patient, particularly a younger person below say 75, with have any designated for of dementia. There are many reasons, but I truly believe that is the case. To get the truth, it usually takes a trip to a specialty memory assessment clinic at a major medical center, along with a PET Scan. Even then, who knows. I don't think it is an attempt at being mean or uncaring, they just don't want to be the bearing of such messages. For me, I just wanted to know. When I finally was told straight out after my trip to the memory assessment clinic and PET machine, I wasn't happy about it, but I was glad to at least know so I could plan and those around me could plan as well. The medical folks just don't seem to understand.
The_Sun_Still_Rises
Posted: Sunday, February 5, 2017 3:36 PM
Joined: 7/24/2015
Posts: 3020


I agree with you Bill, and everyone I talk with re their process of dx seems tell a similar tale.  When I went for my neuropsych it was because my workers were just really NOT helping me and they put off helping me make signs find my bathroom for 4 months while we wait for test....they the ones said it would come with recommendations....and when those same workers did no want help with those, we fired them.  I probably should have fired them long before...but it can be hard me tell just how bad something is with these workers.

<3


obrien4j
Posted: Sunday, February 5, 2017 4:04 PM
Joined: 11/18/2016
Posts: 451


Well this is the second neuropsych testing I've had...both say the same line of BS. When we pressed the neurologist she finally said, "I think you have some kind of dementia ". Like Bill said, it was so hard for her to muster those words, maybe because she's a female and about the same age as I am, who knows?
The_Sun_Still_Rises
Posted: Sunday, February 5, 2017 4:34 PM
Joined: 7/24/2015
Posts: 3020


Yes....when mine tell me "major neurocognitive disorder" I am like wtf?!....I had never heard of this, so I had no clue.  But she was oh-so-sad tell me this and I can no figure out why.  She go on tell me her recommendations she say should help with my workers.   I go home and google it and am like.....sh*******t!    I couldn't tell anyone a long time....I was so deeply devastated. 

I have talked quite many people dx'd Young Onset and most have had trouble getting dx'd.  It a huge problem...especially when they denying people Aricept for soooo long.   They just keep expecting an 80 year old....and they just keep seeing it as sooo sad that they avoid tell us, when all we want, and NEED, is straight answers.  I far more wish they'd treat it like cancer or a stroke.  Tell us straight, tell us what we in for, give us intensive rehab, teach us how live powerfully with this.  And, if they could just understand that although this going progress....that we could have decades...and help us be among those who do. 

In any event, I digress.

<3


obrien4j
Posted: Sunday, February 5, 2017 6:34 PM
Joined: 11/18/2016
Posts: 451


You know, I don't even know why I continue to see drs in all reality.!ive had some great ones in several countries, but the BIG $&@? I had to research and diagnosis.! I think the only reason I should go to drs is for either something new or refills. Like there's not gonna be this groundbreaking cure, we know that, so just make this as easy and peaceful as possible to the end, whenever that may be.i figure  I'm stage 4 now and I'm getting so overwhelmed with my job, I keep playing over and over in my head this week so I don't screw it ip. I've felt pressured by admin before, but I don't have a good feeling right now.  I'm sending off my retirement tomorrow and as soon as it clears, I'll notify HR that I'll be taking my sick leave as if mid-March.
obrien4j
Posted: Sunday, February 5, 2017 7:04 PM
Joined: 11/18/2016
Posts: 451


So well said, Sun.
The_Sun_Still_Rises
Posted: Monday, February 6, 2017 6:30 AM
Joined: 7/24/2015
Posts: 3020


I have had those feelings more than a few times since I became sick...and it have been very hard me stay going. 

One thing that I feel is very important people do during the diagnostic process is get all the tests rule out ANY fixable cause. 

I also wrote an extremely detailed Care Plan....some of which included how I wanted my doctors treat me.  I hand that doctors.  It essentially say, talk directly me....even if you think I can't understand you, give me the benefit of the doubt.  I want direct my own care as long as I am able, and when I am no longer able or no longer care do, I will tell you.  And then I listed out how I wanted various things handled my care.  I tried take ALL choice away from my doctors and carers....so no one have be in doubt or wondering (as I know that stressful from having do with my mom). 

I also felt it was important (and this is just me, my nature) address with each those ahole neurologists....that *this* IS what the face of Young Onset looks like.  There are powerful images the media....but if enough us go their offices eventually we will off set that image.  

I also went back and addressed with each and every provider that had worked with me for all the 6 years I was complaining my brain not working....and told them how much it hurt me that I was NOT given Aricept at the earliest possible time. 

It is what helped me deal with my anger. 

I also became a Dementia Rights Advocate....because it allow me channel my upset at the way things are, in a way that creates change in the world....real and lasting change. 

I try stay as the voice that it IS possible be productive even with advancing dementia...and help those who come after us. 

But be patient you self....the diagnostic time is like no other.  It VERY hard time.  We NOT embraced like we had cancer....we shunned, feared, regulated non-human status.  Instead of fighting for dementia rights, sometimes it even figting for you right just be a human still....and sometimes it even figting against our own desire give up and give in. 

<3


llee08032
Posted: Monday, February 6, 2017 7:40 AM
Joined: 5/20/2014
Posts: 4408


The classification of Unspecified in the DSM 5 is used when there are symptoms and features within the diagnostic class of a specific disorder but those symptoms and features do not meet the full criterion for the disorder or that the symptoms are possibly due to a medical condition. Additionally, unspecified is used when further comprehensive evaluation and diagnostic testing is not possible at that time i.e., being able to compare the first neurological psychological evaluation to the 2nd or 3rd neurological psychological evaluation. Earlier versions of the DSM used the term "Not Otherwise Specified" (NOS) which was changed to unspecified in the DSM 5. 


llee08032
Posted: Monday, February 6, 2017 8:07 AM
Joined: 5/20/2014
Posts: 4408


Andy,

I used to  feel like I froze prior to doing some seemingly simple task like walking and what you described with the steak knife and tying your granddaughter's shoe. I've adapted and now take a moment, breath deeply, self soothe (tell myself "it's okay") and the lapse seems to pass more quickly. The lapses may not get better but you will get better in managing them. 


Andy59
Posted: Monday, February 6, 2017 9:06 AM
Joined: 12/30/2016
Posts: 75


Thanks for all the advice and comments. I try not to let the memory lapses bother me, and will try my best to manage them or try to "will" my way through them while I still can.

Maybe it is time for me to start Aricept or something similar. My Neuropsychologist asked me in November if I wanted to start any meds, my Neurologist was not convinced this is the right time to start meds. However, I see my Neurologist in 2 weeks and I will tell him I know I'm progressing, and I don't want to wait too long to start Aricept.


Michael Ellenbogen
Posted: Monday, February 6, 2017 10:05 AM
Joined: 11/30/2011
Posts: 4463


I can relate to this. I once wrote a book on this subject as you can see from a part of my book below. I once knew all these things very clearly in my life and always pride myself for knowing what most never understood. For me it started out as having those moments of not being sure and it would return in a few minutes. Today many years later I have no clue of any of this. In fact now I use any of the silverware and I just don’t care about it anymore. I cannot focus on what is right any more as it just creates more stress.  

 

 

 

How many times have you gone out to dinner or to an affair and wondered which silverware you should use for each course? This should help clear up some of your questions. Forks will always be placed to the left side of the plate and knives will be on the right side. If the place setting in front of you has two forks and two knives (blades facing in), use the outermost fork and knife to eat the appetizer or salad (the salad fork has a thicker tine at the left to be used for cutting salads or greens). Then use the innermost fork and knife for the main course.

 

Two exceptions are soupspoons and oyster, or shellfish, forks. The soupspoon will be on the right, to the outside of the knives, and an oyster, or shellfish, fork will be to the right of the soupspoon, with the angle facing in (or to the right of the knives, if no soupspoon is needed). Traditionally, an oyster or shellfish appetizer is served first, then soup, followed by salad, and then the main course, so all the silverware is arranged in this order.

 

If you are served cheese, an additional knife and fork are required. They are usually added after the main meal is cleared away. If they are in place at the start of the meal, the cheese fork and cheese knife will be the fork and knife located closest to the plate.

 

A dessert fork and/or dessert spoon is placed above the top of your plate, parallel to the table edge (the fork should be pointing to the right and the spoon in the opposite direction). Sometimes dessert utensils are only brought to the table with the dessert itself.

 

Your bread and butter plate belongs on the left side at the 10:00 position. The butter knife should be sitting across the top of the butter plate. The water goblet is located at the 1:00 position on the right side. You may have two other goblets, one for red wine, and the other for white wine. The red wine goblet is below the water goblet and to the left side (in the middle). The white wine goblet is below the red and to the left.

 

I know you are wondering by now what all this has to do with saving money, time, and aggravation. Just picture going out to dinner for a job interview with an important client, or trying to impress your fiancé's parents for the first time. Sometimes etiquette plays an important part in our daily lives. People make decisions about us based on strange things. The job you are applying for may involve entertaining clients. It could cost you that job just because the first impression you gave was not good. You may even hear about it 10 years after you are married, during an unrelated discussion. ‘He/she was trying to impress us that night yet he/she kept using all the wrong silverware and plates.’ You never know when it could come back to haunt you.

 

 


The_Sun_Still_Rises
Posted: Monday, February 6, 2017 1:14 PM
Joined: 7/24/2015
Posts: 3020


Andy59 wrote:

Thanks for all the advice and comments. I try not to let the memory lapses bother me, and will try my best to manage them or try to "will" my way through them while I still can.

Maybe it is time for me to start Aricept or something similar. My Neuropsychologist asked me in November if I wanted to start any meds, my Neurologist was not convinced this is the right time to start meds. However, I see my Neurologist in 2 weeks and I will tell him I know I'm progressing, and I don't want to wait too long to start Aricept.

------------------------------------------------------------------------

No everyone dementia can handle Aricept, but I definitely think we should be given the benefit of the doubt.  There is no justification waiting. 

But advised that they should increase it SLOWLY the top dose...starting you at around 5mg and giving you body 6 weeks or so adjust it.  It CAN BE hard you system at first and give you the runs. 

I don't think there any one way handle it when it happen....everyone gave such wonderful replies.  I do think it important be gentle and patient you self. 

I try put up picture graphics how do things....and also easy read step by step instructions things.  Sometimes I have put my finger on each one as I do them so I don't lose my place.

Every new progression always hard take....but in time it just becomes you new reality and you learn how adjust. 

And whatever way YOU find through it is ok....it just one more add the mix of ways deal with it.  <3

<3



Mimi S.
Posted: Monday, February 6, 2017 1:29 PM
Joined: 11/29/2011
Posts: 7027


Sorry, I don't think the patient should decide when to begin a med.  Possibly in conjunction wit the doctor.

The way Aricept works, it only slows down symptoms beginning when you start taking the meds.  Some docs believe in beginning during the MCI stage and others wait.  And there can be side effects. Some just require taking at a different time of day and others need to try a different med.     So, when symptoms are interfering with your daily activities may be the time to begin.

And so many of you are arguing against the results of the neuropsych, Yet you say you are having problems coping with daily life. Could it be the agnosia (Iris or someone else will supply the correct word.) at work and not the incorrect diagnosis?  Not what you want to hear. Sorry about that.


Iris L.
Posted: Monday, February 6, 2017 1:55 PM
Joined: 12/15/2011
Posts: 18519


I'm sorry, Mimi.  The word you are thinking of is anosognosia.


Iris L.


alz+
Posted: Wednesday, February 8, 2017 12:15 PM
Joined: 9/12/2013
Posts: 3608


Andy -

One day I went to washing machine with a bunch of clothes and had no idea what to do. I have washed 1000s of loads of clothing. So at same time I was "frozen" in place. 

I remember it because I had practiced not freaking out when my perceptions changed and doing what Llee suggested, relax into it. Turns out it was one of the most relaxed in the moment experiences I have had!  I also have experiences with super calm focus, I cleaned a bedside table drawer one day, spent 2 hours going over little object in there. Everything was fascinating. 

Many other experiences and slow reactions too, initially thought I was somehow refusing to cooperate or answer, later learned it was a mini freeze. Even if these moments are mini-seizures I made a decision to be interested in the cognitive changes that occur, be friendly to them, and enjoy many of them.

You handled your situation really well.


BlueSkies
Posted: Wednesday, February 8, 2017 5:26 PM
Joined: 2/24/2016
Posts: 1096


Reading alz comment it reminded me of a time recently that I took the wet clothes out of the wash and started folding them.  I realized something was wrong halfway through, but couldn't figure out what I was doing wrong  I just stood there for awhile not sure what to do then out of the blue it hit me.  I needed to put clothes in dryer.  It was the strangest feeling, but seems to be happening more and more, so now I just wait till I can figure out what is wrong and if I can't I just move on to something else.
YOKOM
Posted: Thursday, February 9, 2017 9:18 AM
Joined: 2/9/2017
Posts: 1


My husband was just diagnoised with early onset Alzheimer's in Jan. at the Mayo Clinic when I went on line recently to look at his reports his B12 showed 1300 (normal 188-600) what does this mean.  The Dr. did not address this nor did his primary Dr. when we meet with him.    When I googled it showed kidney infection & risk of heart attack.  Is this common with Alzheimer's?  The Dr. did not take him off his B12 vitamin?  I did not address it at the time as I didn't look at his report - but thinking both of the Dr. would have!

 


julielarson
Posted: Thursday, February 9, 2017 9:53 AM
Joined: 9/30/2015
Posts: 1155


Alz you remind me of a collection of things I have that belonged to my grandma who passed away about 5 years ago.. I keep wanting to go through all of it and just look at the items there.. I keep forgetting to do it though.. I will do it today!
Andy59
Posted: Friday, February 10, 2017 8:03 AM
Joined: 12/30/2016
Posts: 75


Thanks for all the excellent responses, and for sharing your own personal memory lapses.

I'm still a little confused, which really is nothing new for me. 

Did some of you get diagnosed with MCI before dementia was later diagnosed? For those that did, did you have the type of memory lapses like I mentioned in the first post on this thread? Also, same question for those of you like me, who are currently diagnosed with MCI?

Maybe I'm getting paranoid or over thinking this this, but to me, it seems that getting confused about how to  hold a knife and fork in the right hands is not in the normal range of memory problems associated with MCI.


The_Sun_Still_Rises
Posted: Friday, February 10, 2017 8:45 AM
Joined: 7/24/2015
Posts: 3020


Decline in MCI is not normal....and IS indicative of dementia process going on...sorry for that hard news. 

You also have beware of somatic responses being dx'd and in participating here....because that happens also.   Not that you mean do that....just that the brain (as opposed the mind), do not know the difference between real and not real...and simply will make things so.   So as you focus on all the symptoms or negativity here....you brain will make so in you life.  It just do that.   Or, when you get dx'd...and you think you might have this.....you brain start making it so.   So you have be real aware that. 

 

I often pop out of the dementia community because I find the constant always focus on it makes my symptoms worse. 

 

You have look at you neuropsych...and see whether it say "major" or "minor" neurocognitive disorder.   Any neuropsych after March, 2015 should say that....OR....they not keeping up with the times and their dx is suspect.  The DSM5 changed in March, 2015.   The neuropsych is the definitive test.  

Most here have MCI....I have Alz, and my first dx was dementia or "major neurocognitive disorder" but it also took 6 years for anyone take my brain complaints seriously....so I had progressed pretty far before take test.  

Don't feel bad about going in early or finding out early.  I think that is good....it give you the best chance get you feet on ground with this dx.   But definitely, if you progressing, you might consider that it one of the dementias.  Whatever is happening in you brain is happening whether a doctor say so or not.  In other words, those who do not go doctors can still have and die from dementia without ever be dx'd.

Hope that helps.

<3


Andy59
Posted: Friday, February 10, 2017 9:05 AM
Joined: 12/30/2016
Posts: 75


Yes, that helped Sun. I do seem to be progressing, and have been for several months, if not longer. I also agree that reading to much about symptoms, or others personal stories, can cause me to feel overly anxious, and that probably effects my memory.