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Mild Cognitive Impairment
Sidfae
Posted: Friday, January 19, 2018 11:09 PM
Joined: 6/11/2015
Posts: 2


I've been diagnosed with Mild Cognitive Impairment and am finding it difficult to connect with others with this diagnosis.  I'd like to connect with others & possibly share experiences & ways others are coping.
Mimi S.
Posted: Saturday, January 20, 2018 1:55 PM
Joined: 11/29/2011
Posts: 6090


Welcome to our world Sidfae, We're so glad you found us. This is the less active of the two sites devoted to those of us with dementia. The younger Onset Board currently is the more acti ve. So if you don't get responses here, repost on that board. These sites are designed for those of us with any type of dementia from MCI and above.

As you know, some MCI progress to full blown dementia and others don't. Let's hope you have the kind that doesn't progress.

At the opening page of both dementia forums is a link for those newly diagnosed. If you can't spot it, call our help line 1-800-272-3900 and ask.  Also ask about support groups in your area. Unfortunately they are less common than those for caregivers. Also ask about memoryCafes, places where we PWD get together to socialize. Also, get the number of your local chapter. Call and see what services they can offer you.  Hopefully, get connected.  Sometimes they offer peer-to-peer contact so you can personally chat with someone else in your situation.


Sidfae
Posted: Wednesday, January 24, 2018 7:55 PM
Joined: 6/11/2015
Posts: 2


Thanks so much for your reply.  I'll call for information re what might be going on locally. I know there is not much available for MCI folks partly because of the following:

Two years ago I enrolled in an experimental Alzheimer's drug program at the local medical school.  As part of the study, I've been tested every 3 months with an hour long battery of a variety of mental tests.  I began to notice about 6 months ago that several of the tests were much more challenging & I was having a few experiences of forgetting or getting confused in typical situations.  I wanted to know if this indicated some impairment.   The doctor leading the study confirmed that I was showing a decline on some of the tests & she suggested I see my primary care doctor.  I did that and my doctor had a social worker administer about 15 minutes worth of memory tests.  Based on that brief exam, I was told I was "fine," in spite of the fact that I was experiencing several symptoms of MCI (e.g. having difficulty navigating, even to places I drive to fairly often; forgetting names of people I have known for years; needing to use my smart phone to keep track of things I used to remember easily, etc.)

By coincidence, later I was able to talk to the neurologist in charge of all the studies in the neurology department, and he was appalled.  This isn't just a problem with my doctor, it's a national disgrace, in my opinion.  The neurologist  has helped connect me with a social worker who specializes in neurological issues, and she has been helpful. I haven't been able to find much on the local Alzheimer's site, but that's probably me.  I think it's ironic that older people who typically aren't super skilled navigating online, and who have problems remembering and learning new skills ,are expected to navigate such a complicated (at least to me) site! I do appreciate the phone service.

If there are no support groups for people at my stage, I'll try to get something like a Memory Cafe/support group started in cooperation with the local ALZ organization. I have been told that nationally, an attempt is being made to put together something for people in my situation, and that's encouraging.  Unfortunately, in the meantime, many people with MCI are  just confused and worried, not understanding what is going on.

Thanks again for your help.

 


Iris L.
Posted: Thursday, January 25, 2018 12:14 AM
Joined: 12/15/2011
Posts: 14829


At first my neurologist did not seem interested in my condition until the results of my extensive neurocognitive testing done by a neuropsychologist showed significant cognitive impairments.  After that, he offered several treatments, one of which was a trial of Exelon patch, which did give me some improvement in memory and speech and even in executive functioning to some extent.  I have a diagnosis of cognitive impairment not otherwise specified.  It is unfortunate that the evaluation for many patients is not thorough or consistent.  Also check for sleep apnea.



Iris L.


alz+
Posted: Thursday, January 25, 2018 5:58 AM
Joined: 9/12/2013
Posts: 3053


welcome to our helping group!

the medical world does not know what to do with cognitive decline.

You have to have help figuring out your specific sources that help you and make the MCI worse or better even when diagnosed. Some drugs help a lot and for a long time, some give people nightmares or other health concerns.

There are some things that cause no harm to try like what Mimi referred to.

Might have B12 levels checked or just try a supplement for a few weeks and see if your thinking improves.

We all believe you! Read posts and please share your experience. Thank you for participating in a research study! I did too and my test scores fell off and they called to tell me that but no other changes in the blood work were ever made available.

Worry is natural and people try to get rid of it, but worry can lead you to finding the answers you deserve, so respect your concerns!


CF257
Posted: Sunday, February 4, 2018 11:24 AM
Joined: 2/2/2018
Posts: 16


Hi Sidfae. I have had a course similar to yours.  Now almost six years since memory (and looking back, cognitive skills, higher executive) started declining to the point it  was affecting my job.  I went to my PCP because of it.  I got a diagnosis of severe depression and anxiety (and now that I have the actual office notes, somatization).  I stayed lost here until this last year, slipping further until it has reached crisis level - cannot keep job, even lowest level, unfortunately no help except elderly parents to keep roof over my head x 1+ years.  PCP not concerned but did send me to psych intern for mini-mental health test.  Results normal, average - which, now that I understand, were nowhere near normal for me.  A major health issue that sidetracked everything for a year or two - memory became my last worry.  But coming out on the other side, again, followed your road.  This past year, got diagnosis of MCI, but it was years after the fact. My medical record omitted all of my concerns about memory - it leapfrogged over that and only mentioned depression, anxiety, somatization.  If I had known, I would have raised Cain long ago.  All I got were looks of sympathy, basically, when I'd complain of memory problems, even when I lost my job of 24 years, and then lost a slew of lower level jobs very quickly.  Crisis and adrenaline pushed me to go outside of my medical team and referrals, to first a hematologist (to look at B12 and at B1 - don't forget to check B1), anemia.  (BTW, I had extensive testing / procedures for checking everything under the sun related to cancer, infectious disease, etc for my health scare, so I already had tons of baseline info from CBC's, etc, etc, etc.  Full workup for basically everything helped rule out a ton of possibilities right out of the gate.)   Hematologist sent me to a neurologist (finally), and he seems to know what he is doing.  You sure can get stagnated with your base team of docs.  Don't be like me, foggy and adrift for years - these are years that were very valuable, while I was better upstairs, and I could have been spared so many problems if the dx came sooner.  At this point, Alzheimers is the main suspect and I suspect that at my next appointment, it may be put on paper in my record.  I will be glad, believe it or not.  So much worse to be adrift, confused, and not understanding what is going on.  And, it will open up resources to me that I have not had.   Point is, don't sit back and let the PCP and your basic docs tell you that everything is fine, even if it isn't.  Maybe get your actual office notes, records.  Those can be eye-opening.  Be aware that even professional neuropsych assessments can be wrong - some people test very well, and can score higher than the average person even if they have significant disease.  Some people start off much higher on the "intelligence scale" of the test than the testers account for, and so an "above average" score is no assurance that something is not wrong.  This is a good site, I am finding.  The people here have experience and knowledge that i am finding most doctors do not have.  Finally, most doctors, I am finding, are extremely hesitant to label a younger person as having dementia.  That is unfortunate.  It leaves the younger, struggling person with no support, until maybe deep into the process.  It really is not fair, but docs nowadays (and for the last 20 years at least) are trained in the usual problems patients have, not in "zebras' - the term for rare problems, like early onset Alzheimers.  And my medical problem in the middle of this too - it was life threatening, very rare, and no one knew what it was.  It was starving me, and i was written off as being anorexic, which was not true.  I had to have a surgery to save my life.  Another "zebra", rare disorder, that docs are generally not trained in and not comfortable with.  Be as proactive as you can, get help with that from your wife, read up here, reach out.  I wish I had done this years ago.  Best.
Andrew60
Posted: Tuesday, February 6, 2018 10:02 AM
Joined: 7/17/2017
Posts: 125


I was DX with MCI in 2016. In November of 2016 I had my first neuropsychological testing for approx 4 hours. I did ok in most areas, but scored in the severely impaired range in the 4 memory tests. I had a 2nd round of testing this past November and scored basically the same. However, my first testing I was new to having cognitive testing and I did not try as hard as I could so I think my score might of been lower than they should have been, and the Neuropsychologist agreed. What concerns me is the 2nd testing, I tried my very best and still scored low, which leads me to believe there has been some progression.

Im easily agitated but can usually shrug it off with headphones and music. I find myself not wanting to go anywhere other than the gym and church, everything else makes me feel like I dont belong, or like everyone is looking at me, I dont feel like I fit in.

I dont take any meds for my condition, although my old neurologist prescribed aricept for me a year ago, but I stopped after a few days because it made me feel loopy with heavy fog in my head. 

I can still do my daily living activites with little to no help. I rely heavily on cell phone reminders for much of what I do.

Several times everyday, i forget why I walked in a room, and somedays, it happens all the time, but after a few seconds, most of the time I remember why.

Sometimes, following along with a TV show is impossible, and watching football games I have a hard time recalling past plays. Somedays, I have no issues with this.

I have been totally lost a few times driving in familiar areas, so I mostly use my GPS, and limit driving to local places.

My personality is changing and this was first noted about 5 years ago, at the same time I started noticing any memory issues.

Physically, Im in great shape as I exercise 1-2 hours daily, with no balance problems or falling down issues.

If you type in Mild Cognitive Impairment in the search engine on this forum, you will find dozens of informative threads.


 
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