Mild Cognitive Impairment

jeaamom4 · September 16

Hi, my name is Barb (61 yo), and I am trying to find out more about Early onset Alzheimer’s.
I completed Neuropsych testing two years ago and was diagnosed with Mild Cognitive Impairment. I feel like I am struggling more so I had the testing redone. I have not heard the results yet, but I know my scores went down. I had a very difficult time with several areas including visual memory.

Are there different levels of Mild Cognitive Impairment or does a decrease in test scores indicate Alzheimer’s?
Is it possible to have awareness of all my mistakes and struggles early on with Alzheimer’s?

I would like to hear more about the struggles people had early on before the Alzheimer’s diagnosis. And if people are still working.

I retired from my school job (as an OT), this past June because the work became too hard. I am trying to return to part time work in the skilled nursing facilities but it has been a nightmare. I am really struggling with all the details and it takes me forever to complete the documentation. I am getting turned around in the building and it takes several moments to figure out where I am. I have to take notes on everything because I can not remember new information. I have cheat sheets with sample goals because I can’t generate writing them on my own.
Locating information on the computer screen is tough. And I have to hold my finger on the monitor to relocate the word I need to copy. My visual memory is poor and I have to look back multiple times for the correct spelling. I can not process verbal directions, so the person has to dictate slowly for me to write it down. And please don’t expect me to remember anyone’s name. I can’t even remember details about the conversations we had.
At home, I find myself more moody and suspicious of my husband cheating on me. (Even though he is not). I panicked when he went into a public bathroom when we were out and did not tell me. I was standing alone and became quite fearful. I never used to feel this way since I used to be really good with directions.

Thanks for any advice you can offer.

Take care

Iris L. · September 17

Hello jeaamom. I see you've been a member since 2013. We're you a caregiver?

Yes, the symptoms that you describe do sound like symptoms of dementia. About 70% of PWDs are unaware of having dementia but that means that about 30% of PWDs are aware of their changes. This lack of awareness is called anosognosia.

Nevertheless, it is still important to do extensive medical testing with blood tests to search for medical dementia mimics. Your PCP should be doing these evaluations.

There are a lot of visual changes with dementia, this is called visual agnosia. You have trouble recognizing what is right in front of you, also trouble judging distances. This affects driving. You should probably stop driving.

It doesn't look like you can be employed. You can apply for Social Security Disability Insurance benefits, if you have enough quarters. You can apply for Compassionate Allowance which will fast track your application. You will need to learn about the documentation required, because there is quite a lot.

You might want to call your local chapter of the Alzheimer's Association to inquire about an Early Stage Support Group or Memory Club.

When you see the neurologist, ask about Aricept or Exelon patch to help your memory. Exelon patch has been helping me.

This is all I can write now. Please continue to read and to post. Peer support is very important.

Iris

jeaamom4 · September 17

Thank you Iris,

I am waiting to get the results of my neuropsych testing before pursuing more evaluation.
How was your dementia diagnosed? How old were you? Were you still working? What type of doctor did you go to for your diagnosis?

Thank you so much for your support

Take care

Iris L. · September 18

Jeaamom, my diagnosis remains cognitive impairment not otherwise specified. I do not have Alzheimer's Disease, as determined by an Amyvid PET scan. I had to retire from my professional career years ago due to memory loss. In the beginning my memory loss was attributed to depression and anxiety. I have been on Exelon patch and memantine since 2009 to help my memory and my speech. I was diagnosed by a neurologist who regularly sees PWDs and who also does research in the dementias.

Iris

jeaamom4 · September 18

thanks Iris,

Your info is very helpful. Did your MCI worsen? Did you have neuropsychological tests done?

Take care

Iris L. · September 18

Jeaamom, over the years, my speech and my short term memory have improved. They are not to my pre-illness, professional level, but manageable enough to the degree that I can participate in regular society. My long term memory is diminishing, however. My neurologist tests me every few years via computer cognitive testing. I continue on my medications and Best Practices.

Iris

alm6168 · September 21

https://alzconnected.org/discussion/70659/mild-cognitive-impairment

Hi Barb,

I just turned 60 and have been diagnosed with AD. I would not have known if my daughter did not encourage me to get a neuropsych evaluation. She thought I had some memory issues. I did it just to appease her thinking nothing would be wrong. The evaluation indicated that I had MCI and suggested I consult with a neurologist. I did so and had an MRI and PET scan. The MRI revealed nothing unusual, but te PET scan revealed deterioration suggesting a diagnosis of Alzheimer's. It's kind of surreal since I function at a very high level and can continue to work without problems. When I compare my current state with 9-10 signs of early AD, I really don't have any of them. But I'm relying on the fact that the PET scan revealed maybe earlier than I would have symptomatically.

I have a good doctors with a neurologist and my PCP. We discussed treatment and I am considering getting on Leqembi or Kisunla, but I am very concerned with the potential side effects.

However, I am getting another opinion from the Mayo clinic to confirm the diagnosis and to discuss treatment plans other than the two new drugs. I am also looking into stem cell therapy. There is a protocol in Japan that was recently approved by their version of the FDA.

Still, I am afraid of the unknown…how long do I have to be able to function at a high level and when the debilitating effect will start. But, I've changed my diet, giving up alcohol and cigars and continuing to exercise (I engage in strenuous workouts 3x per week).

Just like everyone, I have good days and bad days, but still try to keep hope alive as I search for a treatment. Don't get me wrong, I know there are no miracle cures out there right now, but I'm trying to find a treatment that best suits me (or not if I think the risks will outweigh the benefits).

Best of luck on your journey. Being your age with AD, you are not alone.

Al

jeaamom4 · September 25

Al, thanks for sharing about your diagnosis and the testing you have had.

I was wondering if I should pursue another opinion since my functional skills have declined. I dropped to working part time and I am still struggling with the cognitive demands of my job. (I am an OT working in skilled nursing facilities).
It is frustrating to me that my MCI diagnosis is based off one session of testing. I wish the Dr. had spent more time asking me questions about my daily struggles.

On the neuropsych tests the only significant score drop was with the Trail Making Test. 2 years ago I scored in the 50th percentile for part B, and this year I scored in the 6th percentile. And for Part A I scored below average in the 12th percentile. I also scored below average for the WMS-1V in the 16th percentile.

What tests did they use for you that qualified you for a neurologist?

Thanks,

Barb

Janutt · September 26

Hi jeaamom,

I was diagnosed with EOA at 55 years old. I will be 59 next month. I was attending college again to pursue another degree. My daughter got pregnant and I began watching our grandchild. I had planned on finishing another degree once my grandchild was old enough that I could complete my degree. I always loved learning. I was an avid runner. I was actually running with my daughter and grandchild whom was in a carriage. We walked home after. What I had noticed that days and weeks before was that losing weight and having chest pains.

Later that night while getting ready for bed. I was brushing my teeth. I began chest pain and left shoulder pain thinking that I just pulled a muscle. Evidently, I suffered a heart attack caused by Spontaneous coronary artery dissection(SCAD). Well after that happen I came home and had a follow up. My cardiologist did’nt like what she saw and readmitted again. This where my memory deteriorated quickly. The nurse who put on the ECG tabs was so kind. I was telling my daughter who was a nurse. She was the one that did this.

I had a lumbar puncture which confirmed that I do have Eoa, but the neurologist whom I saw and the neurocognitive tests said otherwise. I had functional overlay. They weren’t going to treat me for EOA. No cure no medication. I went for second opinion, confirmed that it is and I’m unique with how it happened. I don’t work. I have had the Pet scan done and another Lumbar puncutre. The lumbar results were worse than the first one. I don’t drive since I had to give up my license. I am grateful that I don’t drive now since it would be a lot harder for me.

I am the 4 generation to have this disease.

eaglemom · September 27

Jeaamom welcome to the message boards. I'm glad you found us and we are all here to support one another.

When you were tested two years ago and give the diagnosis on MCI, did you begin on any medications? From that date until you were recently tested again, were you seeing your neurologist regularly? I'm just wondering who has been monitoring your case.

I do not know of different levels of MCI personally. That doesn't mean they don't exist, it means I've not heard of them. I feel as though you need a neurologist to be handling you and keeping better track of your concerns. Visual changes certainly do happen. Emotions happen, all of these need to be discussed with the neuro. Might I ask if your husband is supportive of you? Hopefully he can be with you at your appointments because he needs to understand what is going on, just like you need to understand. When you get the new results what is your plan? As has been stated, I would venture you would qualify for SSDI (Social Security Disability) which does take time. You might start looking into that while waiting on results.

eagle

jeaamom4 · September 30

thank you Eagle, I am going to contact the Alzheimer’s group north of me (Ann Arbor, MI) to see if they can recommend a neurologist, and a counselor. I have only seen the neuropsychologist who did the evaluations.
I would like to file for disability since I am having such a hard time at work.
My husband has not been supportive and does not go with me to the appointments.
Thank you for your care.

Take care

Iris L. · October 1

Barb, have you had any verbal or written warnings of poor performance from your job?

Iris

jeaamom4 · October 1

https://alzconnected.org/discussion/comment/224351#Comment_224351

thank you for your message, I was hoping to message you and learn more about MCI.

I am working on a contingent basis and currently covering OT in 4 different skilled nursing facilities. I started mid June after retiring from my school job. Instead of completing OT evaluations in the nursing homes, they are just having me cover treatments. I know the Rehab managers would put something into writing if I asked them to. Plus the speech therapist and Physical Therapist would help out from the school job. I would have continued with the school job but keeping up with 4 school districts and working full time became too difficult.

I have not told the current managers that I have a diagnosis of MCI. Today the manager told me that she does go over my work. It is just so embarrassing.

You mentioned leaving your job due to the memory issues. Did you apply for disability? I also have a diagnosis of Primary Sjogren’s which is a progressive autoimmune disorder. I have set a 4 hour limit for work and start at 7 when my brain works a little bit better.
Are there different levels of MCI?
What adaptive methods have you found helpful? I have a memory notebook with me at all times. I will be talking to the neuropsychologist October 17th and hopefully he can explain my 2 reports and the differences in the scores.

Thank you for all your help and support

Take care, Barb

Iris L. · October 2

Hello Barb. Once you get a full report from the neuropsychologist I hope you get answers. As far as I know, there are no levels of MCI. Having MCI means that your memory is affected more than normal but that you have not lost other cognitive functions. Having a MCI diagnosis is a prompt to search for medical causes of memory loss, that do not lead to dementia, but might be called dementia mimics.

You mention Sjogren's Syndrome, which I also have, along with systemic lupus. Autoimmune diseases, including MS and lupus, can have cognitive impairment. Also diseases and conditions such as thyroid disease and Vitamin B12 deficiency. Many medications have memory loss as a side effect. If there is a history of head trauma, this is significant. Also, major depression can be a dementia mimic. All of these conditions should be searched for and eliminated. Also check for sleep apnea. Many of these conditions can be evaluated by a PCP.

There is a government website thst offers tips regarding work accommodations. You can search for MCI and see what accommodations might help you. Go to www.askjan.org.

You are nearing retirement age. It would be good for you to determine how much your stipend would be from SSDI versus from early retirement at age 62, if you can last that long.

If your results continue to show MCI, you may be able to continue to work. But apparently, you are already having difficulties. Your colleagues may be willing to help you out now, but you cannot rely on their support going forward, because they have their own work. I could not do my work at all. I was also in health care. For years, I thought I might be able to improve and return to work, but I never was able to. I had quite a lot of accumulated sick leave which I used until my application for long term disability benefits were approved.

When you go for your appointment, make sure you don't have a dementia mimic. See if the work accommodations will help you. You might ask if the memory meds might help you.

Please keep us updated on your progress.

Iris

jeaamom4 · October 3

Thank you again for responding to my messages and questions. yes I was a member of this group in 2013 when my first husband was diagnosed with Frontal Temporal Lobe dementia.

I remember having to rule out other medical areas for him. I had sleep apnea and used a CPAP for 5 years but have lost 55 pounds and the pulmonologist said I no longer have sleep apnea. I am also off my blood pressure med now. I have been taking Vit B, D and Magnesium for the past 4 years. I don't have a history of a head injury. My mom had later onset vascular dementia which started in her 80's.

Iris did you file for disability on your own, or did you go through a lawyer? I do not have the finances to stop working at this point. How long did you wait for the disability approval? I see that Sjogren's is on the disability list, but MCI is not. Would the combined diagnosis help?

thanks for all your help and support.

Barb

alm6168 · October 3

https://alzconnected.org/discussion/comment/223846#Comment_223846

I don't recall the names of the different tests performed, but there were some that tested memory of a set of words after 15 or 20 minutes, drawing shapes to match those on the paper, repeating back a one or two paragraph narrative story and putting pegs in holes. It was a bit strange since my performance on many of the tests were in the average to above average range, with only a couple at the below average range. Telling me I had MCI, the neuropsych center recommended then to consult with a neurologist.

Iris L. · October 4

Barb, you have had quite an experience with different types of dementia! It's great that you no longer have sleep apnea nor high blood pressure.

I filed for disability on my own under a diagnosis of depression, because that was my first diagnosis. In those days, the late 1980's, I don't think that MCI was a known entity. I had long term disability benefits from my company. In those days, benefits for a mental health diagnosis were limited to 24 months. I also had SSDI, which I applied for on my own.

For about 5 years I lived on SSDI and my savings. After a time, I was diagnosed as having systemic lupus, to explain all of my other symptoms. I reapplied for my long term disability benefits and was denied. I had to engage a disability law firm to have my disability benefits reinstated. This cost me over $70,000 in legal fees, and came out of my award. I remained on long term disability until I reached retirement age, when my pension began. I was fortunate, in that I had savings.

In your case, first, see what the neurologist has to tell you. Write your questions down so you don't forget.

If you can continue working, see if the work accommodations will help you.

You must begin to make plans. You must plan for the contingency that you will be unable to work and will need to retire early on disability. The medical report is very important. Also important is how you are functioning in your daily life. If you are able to work part-time, you will not be considered to be disabled.

You might also consider to ask your questions to a Care Consultant at the Alzheimer's Association. A Care Consultant can give you up-to-date advice. You can call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant. One is available 24 hours a day, and there is no charge for the consultation.

All of this is daunting, but you can get proceed if you write things down and go step-by-step, Barb.

Iris

jeaamom4 · October 4

thank you once again for answering all my questions. I scored the same as Al with only a couple sub test scores in the below average and impaired area. The rest of my scores were in the average to above average range. My appointment with the neuropsychologist is October 17th. At that time I hope to get more answers.
Is it common for neurologists to treat MCI patients?

And a huge thank you Iris for telling me about the care consultant. I will follow up with that.
Thank you for sharing with me that the depression diagnosis was what helped you qualify for disability.
I really appreciate this chance to message with people who truly understand what I am dealing with.

Take care

Iris L. · October 5

Barb, my neurologist referred me back to my PCP. But my PCP did not want to prescribe the memory meds. So I asked my neurologist to continue to treat me. Which he agreed to. He has been testing me over these years. In fact, I received good news today. My neurologist had ordered computer-based cognitive testing along with some cognitive blood tests. I tested within the normal range for both the cognitive tests and the blood tests. Subsequently, he decided to change my diagnosis from cognitive impairment to adult attention deficit disorder. I had issues with working memory and attention, but still within normal limits. He referred me for neurofeedback training. I believe my neurologist is unusual in that he is willing to keep searching for answers.

For you Barb, I think it will be most beneficial for you to ask how significant are your below normal scores? Can you do anything to improve in those areas? Work on the job accommodations.

Another thing I hadn't mentioned is stress. You must avoid stress, because stress impacts our cognition. Try to develop a stress relief method that you can call upon at a moment's notice.

Iris

eaglemom · October 5

I just had an interesting conversation with several nurses and college professor's who are teaching classes on ALZ. That was the very topic: who does the patient see after diagnosis? The neurologist or PCP?

The conclusion that was reached was it depends! A neurologist has to make the diagnosis, that is a given. Some neurologist's want you to stick with them for a stated amount of time, at least a year to follow you. Some refer you back to your PCP because the neurologist has prescribed the medications, so the PCP can now follow you and do the refills.

I think it also depends on who you are most comfortable discussing your symptoms, etc with. Personally, in my DH's case, we've stuck with the neurologist, DH is very comfortable with him and personally I feel he 'understands' dementia on a level that our PCP does not. The PCP is great at his job, and the neurologist is great at his - that's why we've done it that way. But that's our choice, it might not work for everyone.

eagle

VeronicaHAlvarez · October 11

V on the west coast here, I would like to say that my internal med pcp is fantastic, and she stays up to date on meds. She has four children, two with autism, which makes her very understanding. I actively participate in my healthcare by researching and doing the homework she assigns me. I look up information about my medications and vitamins due to my gluten allergies. I want to help, learn, and understand my new medical condition after being diagnosed with EOA at 54. I refuse to let this disease control me, and she helps me with my diabetes control and fibromyalgia. You should always go with the doctor who will help you the best, if they are all helping you go with all of them it can't hurt.

jeaamom4 · October 14

Hi, I really appreciate your very helpful feedback. I am sorry for my delay in responding. I had two job interviews this week. I am trying to find more income options. The first interview was on Zoom, for a position working virtually with school age students. Oh my, what a disaster. At first I could not figure out how to connect so I was 5 minutes late and then I forgot to unmute my microphone. In talking with the lady I quickly realized I truly could not do this job. I then interviewed with a Home Health Care company. I knew right away this job would be way too difficult for me. Especially when I discovered the lengthy evaluation documentation needed to be done within the hour that I would be treating the client. I know it would take me at least a hour to get it done on my off the clock time. I used to be able to handle working both of these type of jobs. It breaks my heart to think I can no longer work as an OT after 39 years of practice.

I have my follow up appointment this Thursday with the neuropsychologist to review the evaluation report. I am going to make a list of questions ahead of time. I am especially asking him to explain the difference between this report and the one from 2 years ago.
I agree with you Iris that I need more specific answers of what qualifies me for a diagnosis of MCI.

And great news for you Iris that you no longer have the diagnosis of MCI. Do you agree with the change of diagnosis to Adult ADD? My report also suggested ADD. But isn’t it typical to see loss of concentration and difficulty with distraction with MCI? Will you start taking ADD medication?

thank you, and take care, Barb

Mild Cognitive Impairment

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