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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: 6568


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: 15450


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: 3233


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: 24


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: 342


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.


aprilbday12
Posted: Friday, March 23, 2018 4:09 PM
Joined: 11/11/2015
Posts: 1


I have MI too. I live in Wash DC. I am 63. I retired in May 2017. I could not 

Remember the name of my students!!! 


Iris L.
Posted: Friday, March 23, 2018 7:52 PM
Joined: 12/15/2011
Posts: 15450


Welcome to our online support group, aprilbday12.  I'm sorry you have to be here but I'm glad you found us.  My birthday is also in April and I used to live in Wash D.C.  My dx is cognitive impairment not otherwise specified.  Were you able to receive a disability pension? 


Please feel free to join us, respond to posts, and to post your own threads.  You can do that by going to the main "I Have Alzheimer's" or the "Younger Onset Alzheimer's" boards and clicking on the green "Add Topic" button.  Then post a heading and your question or statement in the text box, and hit "Post".  Other members will respond.


Iris L.


Mimi S.
Posted: Sunday, April 1, 2018 2:21 PM
Joined: 11/29/2011
Posts: 6568


A MINI MENTAL TEST IS NOT A SUBSTITUTE FOR THE FULL NEURO.  ALSO COMPLETE BLOOD TESTS AND BRAIN SCAN ARE NECESSARY TO RULE OUT OTHER TYPES.

ANDREW,DID THE NEURO DETERMINE THE TYPE OF DEMENTIA YOU HAVE.

DO'T WORRY ABOT NOT DOING YOUR BET EFFORT ON THE NUURO.  YOUARE THERE TO FIGURE OUT WHAT'S GOING ON.

DO STAY WITH US.

THERE IS A VERY WAVY LINE BETWEEN MCI AND EARLY STAGE.


Andrew60
Posted: Monday, April 2, 2018 10:56 AM
Joined: 7/17/2017
Posts: 342


Mimi - I have not yet been diagnossed with dementia, but instead, its Mild Neurocognitive Disorder NOS, or what was called MCI.

I have an appt next week with a different Neurologist, so it will be interesting to see what his diagnossis is, and if it changes my current diagnosis.

I certainly do not want to get bad news, but Im the type that needs to know all, good, bad, and ugly.


Mimi S.
Posted: Monday, April 2, 2018 1:36 PM
Joined: 11/29/2011
Posts: 6568


Andrew,

Good luck.

Hopefully this neurologist specializes in dementia.

My experience is there is a very wavy line between the end of MCI and the beginning of Early Stage dementia. The more important question is; do you feel you are progressing?


Andrew60
Posted: Monday, April 2, 2018 3:22 PM
Joined: 7/17/2017
Posts: 342


Mimi S. wrote:

Andrew,

Good luck.

Hopefully this neurologist specializes in dementia.

My experience is there is a very wavy line between the end of MCI and the beginning of Early Stage dementia. The more important question is; do you feel you are progressing?

Yes, I feel like I have progressed, and Im near the invisible line that separates MCI from dementia. But, who knows, maybe its all in my head.........Sometimes I feel like my mind has a mind of its own.


roles reversed
Posted: Tuesday, April 10, 2018 11:36 AM
Joined: 3/30/2018
Posts: 2


Thank you. your post was very helpful for me.  I am 79 and dx with earl Alzehmiers.  Sorry for the misspelling--the words are underlined but spell check doesn't appear to be working for.  I depend heavily on spell check.  Anyway, I did not go through extensive testing, for which in some ways I am thankful as even the thought of it is exhausting to me.  I was sent to a neurologist for an eye problem and he did 3 different MRI's and discovered that I had a poor blood supply to the back of my brain that has probably been present for a long time.  He also did extensive interviewing (my appointments were some times 1 hr or more) and asked me if I wanted to try Aricept. I did and found that it improved my ability to navigate when driving and lifted the fog I was experiencing. He thourghly explained the progression that I might experience, using the med, which would stay steady for approx 5-10 yrs and then decline sharply.  He has since retired and my PCP is on board with the med and dx.  I see a new neurologist (same office for a follow up in May).  I am nervous about this.  I received some great material from the Alz organization. Many of the coping mechanisnms that they recommend I have been doing for some time.   Some days I feel great and others I just want to stay in my apartment.  I still volunteer in  a medical clinic for the homeless(once a week, have cut back) and my 'boss' really a friend is the only one that knows of my dx, except for my priest that I go to confession to.  My boss being an RN (I am a retired RN) is very supportive.  I need to talk about how I feel to some others that understand and hove that this will be the place.  I don't really understand how the boards work as I have quit using most social media things as they are too frustrating to me.  Have to run now but posting this seems like I am making some progress in connecting.  So many of the sites deal more with the younger age group.  It seems that early stage is just looked at as 'normal aging' and people just wait till it gets bad and then it will be too late for me to have much control over my life.  I want to live the best I can, while I can.  Thanks for listening and I hope someone will see fit to reply.
Mo42
Posted: Monday, May 21, 2018 7:56 AM
Joined: 5/20/2018
Posts: 13


I too have been diagnosed with MCI ,  no support near my house,  my sister helped me start this support on line.   I'm very slow at it, and hope I can get on each morning and post and read about others who travel this Road.   I was diagnosed March 2017 .   It has been hard.    

Mo42  


Mo42
Posted: Monday, May 21, 2018 8:07 AM
Joined: 5/20/2018
Posts: 13


IM here and new trying to navigate this site but between my age 75 and my diagnoses, it is hard to learn,   it would be great if I had a call time 3 times a week where I could talk to someone, who also was newly diagnosed,  is their a program like this?

Mo42


Mimi S.
Posted: Monday, May 21, 2018 9:16 AM
Joined: 11/29/2011
Posts: 6568


April, Welcome to our world. We're so glad you found us.

The help line can give you our local chapter #.  Do call during normal business hours and make sure you are talking with the local. Ask about services in your area.  Memory Cafes are wonderful.  Ask about other services that might help you.  Do get involved in the walk and other activities. 

I, too, get so angry with doctors who don't take our memory concerns seriously.  The mini mental test is only a screening test. A good doc would look carefully at any tests with a low score.  And scores should be interpreted on either a known IQ or a guestimate based ones education, job, just talking with the person, etc.

Do think about your life style and Best Practices.  Following it may keep you in the earlier stages for a longer period.

1. Take meds as directed.  Many docs give nothing for MCI.

2. Physical exercise.  Increase?  You want to get that heart pumping during exercise.

3.Cognitive.  Keep mind active and challenged.  A variety is best.

4. Mediterranean Diet  No smoking.  Limited alcohol.

5. Socialization is importgantg. We ,however, donot like large crowds or noise.


sheilajoe
Posted: Wednesday, November 14, 2018 11:58 AM
Joined: 11/14/2018
Posts: 2


I was just dx with MCI but know nothing about it.  Can you give me any info?
Mimi S.
Posted: Wednesday, November 14, 2018 12:18 PM
Joined: 11/29/2011
Posts: 6568


Hi Sheila,

Welcome to our world. I'm so glad you found our site. Do search for Mild Cognitive Impairment on this site and on the internet. The good news is that many MCIs never progress further.

Several of us PWDs have found Best Practices a good life style:

1. Take meds as directed. Often not given at the MCI stage.

2. Vigorous physical activity. Get that heart pumping. ReseaRch has shown that physical exercise builds new brain cells 

3. Varied cognitive activities.

4. Mediterranean diet. No smoking. Limited alcohol.

5. Scialization is important. We need face to face, although we usually do not like large crowds and noise.

Do cptact your local Alz. chapter. Get information by calling our help line 1-800-272-3900

 

 


Navy1911
Posted: Thursday, November 15, 2018 8:32 AM
Joined: 7/2/2018
Posts: 4


I am finding the same problem. Lots of informaton about al other stages but not much about he frustration od the early stages. Lets discuss
Mimi S.
Posted: Thursday, November 15, 2018 10:16 AM
Joined: 11/29/2011
Posts: 6568


Welcome to our world, Navy. I'm so glad you found us.

Do enter mild cognitive impairment in your search engine. I found quite a few articles. just Remember, not all MCIs lead to full blown dementia. However, this is an opportunity to get your medical and legal papers in order. Do see a Certified Elder Las attorney.

Several of us PWD strongly recommend a Best Practices life stype"

1. Take meds as directed. Not too usual at this stage.

2. Vigorous physical exercise. Get that heart rate pumping at a higher rate for a bit. Research has show that such also build brain cells.

3. Cognitive exercise. A variety is best.

4. Mediterranean Diet. No smoking. Limited alcohol.

5. Socialization. We all need face to face encounters with folks. We PWD usually do not like large crowds and noise.

Do get involved in your local Alz chapter. Call our help line 1-800-272-3900bfor your local #. Call during normal business hours and make sure you are speaking with te local chapter. National answers after a number of rings.

 


 
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