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I Have Alzheimer’s or Another Dementia
Mild Cognitive Impairment
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.
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.
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.
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!
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.
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!!!
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.
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.
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.
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.
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.
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?
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.