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Info on diagnosis
Posted: Sunday, March 8, 2015 10:47 AM
Joined: 4/4/2013
Posts: 42

I have been diagnosed with Subthreshold Amnestic Mild Cognitive Impairment. Not sure what that entails. My dr just said I showed positive for Alzheimer in about 1/4 of testing. Or at least that's what I heard! I think she said I had 2 of the 3 items in bloodwork. Sorry, just can't think of the trrmimogy right now. So that seems okay.

My mom has Alzheimer's so it's something I'd like to stay on top of. Unfortunately I had to change insurance and now can't find anyone to take her place. My dr is head of a major alzheimer's diagnostic research places in US.

I'd appreciate any info!

Iris L.
Posted: Sunday, March 8, 2015 12:02 PM
Joined: 12/15/2011
Posts: 16084

Jshu, I did a search for Subthreshold Amnestic MCI and came up with your post from last year on the same topic.

MCI means you have memory problems, but not to the level of Alzheimer's Disease. Also, your risk of converting to AD is high. But you knew that already, because of your family history.

Mimi mentioned Best Practices. If you cannot exercise, be very cautious about your diet and nutrition. Follow a Mediterranean diet and avoid sweets.
Eat many vegetables.

Keep your mind stimulated with interesting topics--this means, limit tv. Get out if you can, for socialization. Is there a senior center in your area?

Avoid stress and conflict and anxiety as much as you can. Hard to do, but you must develop a spirituality that includes stress relief. "What doesn't matter, just doesn't matter."

Mimi also suggested making contact with your local chapter of the Alzheimer's Association. Have you done that?

Keep reading our board and best wishes on caring for your Mom.

Iris L.

Posted: Monday, March 9, 2015 7:44 AM
Joined: 4/4/2013
Posts: 42

Oh, thanks for note! Forgot I had posted earlier. I guess I'm having a hard time really getting it.

Yikes! I'm doing most things wrong reading your note. I love sweets, have s string spirituality but have high outside stressors and can't exercise because of Systemic Exertion Intolerance Disease (SEID) formerly aka CFS. Watch a fair amount of TV.
I have a hard time cooking so I just heat up chips and cheese most of the time.
Well, your post has helped motivate me! Thanks!

Iris L.
Posted: Monday, March 9, 2015 12:22 PM
Joined: 12/15/2011
Posts: 16084

It is not too late to begin. Here is a thread on Best Practices:

Also, read about myalgic encephalopathy and its treatment.

Iris L.

Mimi S.
Posted: Monday, March 9, 2015 3:59 PM
Joined: 11/29/2011
Posts: 7036

Hi Jshu,

Do you live anywhere near a large University or Medical Center that has a Dementia Department? Have you gone to such a place for a diagnosis confirmation for both of your conditions? Both The CFS and the MCI have several symptoms in common and I would like you to have the best of expert opinions.

Do ask if you would be eligible for ay clinical tests.

And I would also check about exercise. What type might you begin with? Granted, you won't be able to do much, at least at the beginning, but every bit helps.
Instead of focusing on what you can't do, think about what you can do. Maybe at first it will only be arm rotation for a minute, or doing a dance step through your apartment, but as long as it's a better than you did, that's your only aim.

Cognitive activities are also important. Again, you get tired and that's OK. Just make what you try a little bit harder or try for just another minute.

And the Mediterranean Diet is something you can do. Again, if it's a major change, one meal or item at a time.

Once a week (no oftener) make a log of what you can do cognitively, physically and nutrition wise.

How active socially are you?

Do stay in touch.

Posted: Monday, March 9, 2015 4:32 PM
Joined: 4/4/2013
Posts: 42

Iris L,
Thanks for the link on Best Practices. I'm printing it off!

Posted: Monday, March 9, 2015 5:00 PM
Joined: 4/4/2013
Posts: 42


Yes my dr is Rachelle Doody, head of Houston's Baylor Alzheimer's department.

My problem is that now I'm on a managed care Medicaid program. My dr takes my Insurance, but wants me to have a neuropsych test each year with a specific testing association. They don't take my insurance. So I don't have insurance and can't figure out how to get it.
I have a dr who specializes Lyme Disease, CFS, ME, SEID, etc. I don't have insurance for her either. There is some overlapping, but Dr Doody said that what troubled her was 1/4 of my answers on testing were indicative of ALZ.
We decided to wait a year to start Aricept etc. she felt like the longer you can he out the better in the long run. But now I'm in limbo.

With SEID, the primary symptom is exercise Intolerence. There is some very interesting data on PEM, Post Exertional Malaise. Really fascinating how it affects the body. I am very intolerant to any exercise. Just going to the grocery store one day and church the next can put me to bed for 4-5 days and possibly longer.
But I do work on things like Soduko, etc. I also work very hard on being positive. I have a church but between my health and driving back and forth to see my mother and take her to the dr (3 hour rt with no traffic) and visiting my stepfather and mentally challenged sister every few weeks is tough. Especially since I end up in bed for days after each trip. It's been hard to be very active in my church.
It's also hard because when I moved here two years ago, I was starting to have memory problems. It's hard to make friends when I forget their names, don't remember the smallest things, don't get jokes, etc.

But we all have problems. I've been a little slow in accepting mine, but I'm working on them!

Iris L.
Posted: Monday, March 9, 2015 5:23 PM
Joined: 12/15/2011
Posts: 16084

Jshu43 wrote:

We decided to wait a year to start Aricept etc. she felt like the longer you can he out the better in the long run. But now I'm in limbo.

If and when to use the medications are an individual decision. When I received my sample box of Exelon patches, I held them for 3 months, because I was afraid that using them was an admission of having Alzheimer's disease.

As long as I did not use them, I felt okay. An second opinion neurologist to me not to use the Exelon patches. She said they would not help me at all.

But then I had an episode with leaving the stove on, unattended, and letting food burn. In fact, a few episodes. And I left the water in the tub running over for several minutes, allowing water to enter the living room and the bedrooms.

I realized I was on a bad pathway with only more bad, scary happenings in the future. I knew I had to do something, and using the Exelon patches was the only "something" I had available to do.

And lo and behold, they worked for me! There is no way to predict if the memory meds will help a patient--you just have to try, and see the result.

Work on Best Practices, bit by bit, and treat depression and SEID because they overlap and can mimic dementia.

Iris L.

Posted: Tuesday, March 10, 2015 10:12 AM
Joined: 4/4/2013
Posts: 42

I've had several "incidents". Leaving oven on is kind of normal foe me. Taking cookie sheet out of oven without hot pads because I thought I didn't need them for a quick look. Went to Hispital kn that one. Burning food. Seriously have a hard time hetjng water up. Then had stick blender and I decided not to unplug when I was cleaning because I didn't want cord get in food. Had six stitches for that.
It's hard to say though. Sometimes I do pretty good. My sister who doesn't see me much said it was very noticeable, but my son who sees me all the time doesn't think its too bad. I am ready to go back to dr if I could figure out how to.

Iris L.
Posted: Tuesday, March 10, 2015 11:39 AM
Joined: 12/15/2011
Posts: 16084

Clearly, your medical issues are affecting your safety in the household. This is not good, especially since you are also a caregiver for your mom. Have you told the doctor how your life is being negatively affected by your impairments?

I suggest you call the Helpline and speak with a Care Consultant. I did for myself, and I was referred to a local organization that sent out a social worker at no charge to me. She came to assess my home and my needs. Perhaps there is a similar service for you in your locality.

In the meantime, please read the section on home safety and take precautions. Safety is a priority! If you are in the ER or the hospital, you cannot be there for your mom. If your home is damaged by fire or water...well, I don't have to say any more.

One of the first signs of dementia/impairment, that we do not often think of, is lack of good judgement. I believe this is because we don't see the big picture and stop thinking ahead. But once we become aware, we can take the necessary to compensate.

Iris L.

Posted: Tuesday, March 10, 2015 11:12 PM
Joined: 4/4/2013
Posts: 42

Hi Iris!
Yes, my home could be in better shape. No AC or heat. The floor is warped from water damage. It's like a trampoline. I'm on a waiting list for help with that. Not sure how long as it's volunteers.
But I did have someone in home health come out. My Medicaid covers it. They will do a bit of cleaning and maybe cook some. I haven't had them cook yet as i don't know what to tell them to cook.
But that's a help.
Yes, I probably didn't make the best decisions. But up to two years ago, I had been promised by my Mom that she was leaving me my home they had bought for me and quite a bit of money. I thought that and my retirement would allow me to survive. But she didn't make a will (partly my fault as I thought my stepfather saw me as his daughter so I didn't want Mom to treat me differently. She was going to leave some money for grandchildren and then the rest to me. Dad would then leave his to my other sister.)
So, two people not making good decisions together.

As I just can't work, my son's health is disabling, I just don't know what to do to help my financial situation.

I took mother to dr yesterday. She is having a lot of pain the drs can't figure it out. But it ended up costing me close to $50 for gas money, taking her to lunch, parking, etc. that is really hurting my budget this month. And the dr wants me to take her to another dr. But she either gets very irritable or just sobs she hurts so much. Her lower back hurts and her shoulder she leans on in bed hurts but she also has pain under her jaw we can't figure out yet.
She told me it was okay while she was crying, but I told her it is NEVER okay for her to be In pain. So, I just don't want to abandon her. Well, I do believe in prayer. If not, I think it might be too much!

Thanks for your care!

Paul Hornback
Posted: Wednesday, March 11, 2015 3:16 PM
Joined: 8/9/2013
Posts: 584

Jshu, welcome to our boards. As you can see, Iris has a world of wonderful advice. We have all learned and benefitted from her experience and knowledge.

I'm so sorry to hear about your situation and your mom's. I will be remembering you in my prayers. I'm so glad you are getting help from home health. They are very beneficial especially when you can't do everything you used to do.

Please take Iris advice and do take care of yourself because you can't help your mom if you should have another serious incident.

God bless and prayers, Paul

Posted: Sunday, April 12, 2015 5:15 PM
Joined: 4/10/2015
Posts: 25

Hi JSHU43,

Your honesty and openness are wonderful. I thought I might add some thoughts, but these are ONLY MY OPINION.

Please make an effort to reach out beyond your comfort level and tell people within your community what is going on, anybody and everybody. Perhaps there is a local church that can help with rides or even just to listen. Also, as has been said, call the Alzheimer's Association Helpline (800-272-3900). You can also see if there is a local Area Agency on Aging.

Get yourself an electric kettle - no burns. We have one here at our house and it is wonderful. You can make hot chocolate, Ramen noodles and tea. (The brand name starts with K.) You might contact your gas company or somebody and ask them to put a cutoff switch on your stove. This will somehow cut off your stove if you leave it on too long.

Of course, I can't remember what you said about eating, but I had the same problem. I finally started a little grocery list of things that I like or things that I find I will eat. I take that with me to the grocery store. Grocery shopping has been a problem but this has helped. Meals on Wheels would be another alternative.

Okay. Have a lovely day and keep writing us!

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