Anyone Else Have Mild Dementia?

Posted by carolee888 @carolee888, Jun 25, 2022

About two weeks ago, my neurologist told me that I have Mild Dementia. He gave me an appointment for 6 months, upped the dosage on one of my prescripions and that was it. I am thinking, now what do I do?

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@carolee888, that's hard news to get and I can understand your being left with that almost unaswerable question of "Now what?"

I think fellow members like @artscaping @larryh123 @emyliander @mountainsueh @sherwood06 @dougjanehaltom @helenfrances will relate to what you're facing.

Carolee, do you find that following a daily routine helps? If I remember correctly, you also like to pursue creative projects that make you happy.

REPLY

Good afternoon @carollee888, I read your post several times until it really settled in. It reminds me about being left at the edge of a cliff. Initially I was diagnosed by a neurological psychologist with GAD….or anxiety that was interfering with my brain. I started with 30 mg of Duloxetine taken every morning. Now three years later I am taking 120 mg every morning.

I also find that my brain can only concentrate on one thing at a time. If someone interrupts my statement, I lose the thought totally. It may come back later or not. I missed appointments, and had a couple of panic attacks when I lost my way either mentally or physically. My PCP was concerned that I would be unable to follow directions either written or verbal and I see that beginning.

After my appointment in February she referred me a Behavioral clinician. I just had my first 2 hours of testing because it took this long to get the appointment. My next appointment is for another 2 hours of testing. Then we will discuss treatment in a shared decision process.

In the meantime I am trying to keep an up to date calendar and review it every morning. I use Notes on my devices to help. And as Colleen mentioned I work towards daily routines with exercises, meals, and activities. Creative projects are always rewarding except when I get so excited that I forget my routines.

Carolee, I hope this helps you begin to find your path to “being all you can be”.

Please know that you can contact me any time. I look forward to being part of your support team.

Where would you like to start?
Chris

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@colleenyoung

@carolee888, that's hard news to get and I can understand your being left with that almost unaswerable question of "Now what?"

I think fellow members like @artscaping @larryh123 @emyliander @mountainsueh @sherwood06 @dougjanehaltom @helenfrances will relate to what you're facing.

Carolee, do you find that following a daily routine helps? If I remember correctly, you also like to pursue creative projects that make you happy.

Jump to this post

@carolee888 , since we moved to NY I have seen a Neurologist, had an MRI which showed I had had some very small mini strokes. The doctor put me on Vit B shots once a month, then went to pills daily. It did help. This year my VB level was too high so I stopped taking it. Now it is too low and I’m back on the pills. However before I got the results of my labs I told my PCP that my memory had not been as good and sure enough VB was low. I keep my calendar next to my chair, and on my phone, and make use of the alarms to remind me when I need to go somewhere.
Just today I found a very nice retirement card which I had written some nice comments in and for the life of me I can’t remember who it was for, and obviously it didn’t get sent.
My life is very busy so I don’t have much time to think about it all. At 76 yrs old I’m well aware that I don’t have a long time to live but I’m young at heart and try to enjoy my days.
An Asprin a day, the Mediterranean diet and exercise was his prescription. I see him yearly.
I hope when everything settles down and you come to terms with what you have to deal with
, that this too will be a normal part of your life that you will learn to compensate for. Your in good hands with the folks here.
Emyliander.

REPLY
@artscaping

Good afternoon @carollee888, I read your post several times until it really settled in. It reminds me about being left at the edge of a cliff. Initially I was diagnosed by a neurological psychologist with GAD….or anxiety that was interfering with my brain. I started with 30 mg of Duloxetine taken every morning. Now three years later I am taking 120 mg every morning.

I also find that my brain can only concentrate on one thing at a time. If someone interrupts my statement, I lose the thought totally. It may come back later or not. I missed appointments, and had a couple of panic attacks when I lost my way either mentally or physically. My PCP was concerned that I would be unable to follow directions either written or verbal and I see that beginning.

After my appointment in February she referred me a Behavioral clinician. I just had my first 2 hours of testing because it took this long to get the appointment. My next appointment is for another 2 hours of testing. Then we will discuss treatment in a shared decision process.

In the meantime I am trying to keep an up to date calendar and review it every morning. I use Notes on my devices to help. And as Colleen mentioned I work towards daily routines with exercises, meals, and activities. Creative projects are always rewarding except when I get so excited that I forget my routines.

Carolee, I hope this helps you begin to find your path to “being all you can be”.

Please know that you can contact me any time. I look forward to being part of your support team.

Where would you like to start?
Chris

Jump to this post

Hi Chris,
Thank you for responding! I take 60 mg in the morning and 60 mg at night of Duloxetine every day. I have been diagnosed with ADHD but never told my current neurologist. I was put Ritalin for it and scared me so much!!! I woke up ovef and over again with night terrors, dreams that only a team of Hitchcock and Stephen King could dream of. I was afraid of telling my neurologist when I changed to him that I had ADHD because of the medicine that I tried!
I wonder if you could ADHD too, Panic attacts and only being able to concentrate on one thing, symptoms for adult women.
I have been keeping two appointment books, one that I take with me to the appoinment and another one for more private stuff like webnairs that I have signed up for ! Now that one is missing.
I get caught in creative projects too and forget to check the time.
If you do FB, the easiest thing would be to set up a private room. I can communicate by e-mail and phone, Please let me know which of these three methods that you would prefer,
Your friend,
Carol

REPLY
@emyliander

@carolee888 , since we moved to NY I have seen a Neurologist, had an MRI which showed I had had some very small mini strokes. The doctor put me on Vit B shots once a month, then went to pills daily. It did help. This year my VB level was too high so I stopped taking it. Now it is too low and I’m back on the pills. However before I got the results of my labs I told my PCP that my memory had not been as good and sure enough VB was low. I keep my calendar next to my chair, and on my phone, and make use of the alarms to remind me when I need to go somewhere.
Just today I found a very nice retirement card which I had written some nice comments in and for the life of me I can’t remember who it was for, and obviously it didn’t get sent.
My life is very busy so I don’t have much time to think about it all. At 76 yrs old I’m well aware that I don’t have a long time to live but I’m young at heart and try to enjoy my days.
An Asprin a day, the Mediterranean diet and exercise was his prescription. I see him yearly.
I hope when everything settles down and you come to terms with what you have to deal with
, that this too will be a normal part of your life that you will learn to compensate for. Your in good hands with the folks here.
Emyliander.

Jump to this post

Hi Emyliander,
We match in age, I got to 76 on May10th this year and even my memory is reliable, I still feel young.
My MRI showed a decrease in mass and mini strokes too. I take B12 sublingual (under my tongue). I took a B complex pill for years and then the doctor told me that it was not doing me any good. But the sublingual ones raised the level on my tests, just remember to take it!
Do you prepare the food for the Mediterrean diet yourself. I fix my breakfast and dinner which are simple and my husband makes me lunch that includes a lot vegetables. I love salad so much but always get sick from the salad greens, raw spinach and anything green from the grocery store. I have a low immune system and cannot drink tap water. Bottled water works for me but I really missed fresh salad greens. Please tell me what you eat on that diet, maybe I change my current diet some.

Thank you,
Carol

REPLY
@carolee888

Hi Chris,
Thank you for responding! I take 60 mg in the morning and 60 mg at night of Duloxetine every day. I have been diagnosed with ADHD but never told my current neurologist. I was put Ritalin for it and scared me so much!!! I woke up ovef and over again with night terrors, dreams that only a team of Hitchcock and Stephen King could dream of. I was afraid of telling my neurologist when I changed to him that I had ADHD because of the medicine that I tried!
I wonder if you could ADHD too, Panic attacts and only being able to concentrate on one thing, symptoms for adult women.
I have been keeping two appointment books, one that I take with me to the appoinment and another one for more private stuff like webnairs that I have signed up for ! Now that one is missing.
I get caught in creative projects too and forget to check the time.
If you do FB, the easiest thing would be to set up a private room. I can communicate by e-mail and phone, Please let me know which of these three methods that you would prefer,
Your friend,
Carol

Jump to this post

What a considerate response. I am happy to hear that Duloxetine has been helpful. We are on the same dose. Your presentation about ADHD has my mind working. I will discuss that issue with my Behavioral Clinician next week.

Do you think you have missed something by withholding the ADHD experience? I know exactly how you felt. I have been tempted to do the same on occasion. However, I believe in shared decision-making with my clinicians so I must do my part. The problem is I am being asked questions about things that happened 40 and 50 years ago. I am afraid of getting things wrong or leaving important points out.

That is a great idea about the webinar times in a different book. How often do you remember to look at it? Hmmmmm I miss so many for one reason or another.

I am not a big FB user……..just post art and puppy dogs.

Perhaps it would be best to use what we already have….Connect. Then others can benefit from our experiences and join the discussion if they have something to ask or more information to contribute.

Let's stay in touch. I especially want to share this second two hours of testing with you.

May you be happy and whole!
Chris

REPLY
@artscaping

What a considerate response. I am happy to hear that Duloxetine has been helpful. We are on the same dose. Your presentation about ADHD has my mind working. I will discuss that issue with my Behavioral Clinician next week.

Do you think you have missed something by withholding the ADHD experience? I know exactly how you felt. I have been tempted to do the same on occasion. However, I believe in shared decision-making with my clinicians so I must do my part. The problem is I am being asked questions about things that happened 40 and 50 years ago. I am afraid of getting things wrong or leaving important points out.

That is a great idea about the webinar times in a different book. How often do you remember to look at it? Hmmmmm I miss so many for one reason or another.

I am not a big FB user……..just post art and puppy dogs.

Perhaps it would be best to use what we already have….Connect. Then others can benefit from our experiences and join the discussion if they have something to ask or more information to contribute.

Let's stay in touch. I especially want to share this second two hours of testing with you.

May you be happy and whole!
Chris

Jump to this post

That is fine to continue with Connect. My eyes are bleary with eyedrops right now. It takes about 35 minutes for them to return to normal. I have wavered back and forth on whether to tell him or not. If we move. I tell the neurologist on the 1st appoinmentl

I found my other appointment book! It was in trash! I had hunch and there it was! I need to not put anything on the right side of my desk because it may fall there!
I look at the booklet wtth the webnair information every morning. I have an appointment with my dermatologist tomorrow and nothing in it unly July 7th-ADHD webnair.

I want to update my medicine list today and if my husband is schedule appoinment for both of us after my eye surgery.

Those are two big things, I hope to have at least one of them done by the time that I write you again. Will be inerested to find out how your 2nd part of testing wenr.
Until then, hope that you are well and happy,

REPLY

Hi Carolee,
I’m so glad you’re having the neuropsych testing, this will create a baseline so that it can be repeated in 5-10 years to compare/contrast your progress. Unfortunately, MCI (minimal cognitive impairment) does progress to the long road of dementia, BUT you can start right now to get into coping habits which will keep you organized and functional.
It’s vital to start now and to become a dedicated keeper of your calendar. I like a Monthly calendar book, where I can see a whole month at one time. I write in all appointments, all tasks to be done, I use different color highlighters for MD appts, tradespeople, get-together with friends/family, grocery pick-up, etc. The book sits on the kitchen counter so I see it immediately when coming out for morning coffee. I have a roomy purse so I can take it to all appointments and immediately write in the next appointment made.
Now, before bedtime, I write a reminder note of the day’s appointments/tasks and tape it to the microwave where I see it when I go to make my morning coffee. Anything I need to take with me the next day (library books, etc), I hang on a doorknob of the back door I’ll be going out of. Any shopping/errand list I tape to the doorknob so I can’t leave without seeing and taking it, then I tape it to the dashboard of my car.
I bought a calendar clock from Amazon which has the time, the time “area” (morning/afternoon/evening), the day of the week, the date (month, day, year). It’s a surprisingly helpful way to stay oriented, especially in winter when you take a nap, wake up, your watch says 6:30 and you’re suddenly not sure if you slept overnight or it’s time for dinner!
As others have mentioned, it works really well and is comforting to do things on the same regular daily schedule. I use a pillbox to be sure I take my meds. I drive and do errands during the week and during regular working hours, so stores and the roads are less crowded.
You will be fine and I wish you all the best.

REPLY
@centre

Hi Carolee,
I’m so glad you’re having the neuropsych testing, this will create a baseline so that it can be repeated in 5-10 years to compare/contrast your progress. Unfortunately, MCI (minimal cognitive impairment) does progress to the long road of dementia, BUT you can start right now to get into coping habits which will keep you organized and functional.
It’s vital to start now and to become a dedicated keeper of your calendar. I like a Monthly calendar book, where I can see a whole month at one time. I write in all appointments, all tasks to be done, I use different color highlighters for MD appts, tradespeople, get-together with friends/family, grocery pick-up, etc. The book sits on the kitchen counter so I see it immediately when coming out for morning coffee. I have a roomy purse so I can take it to all appointments and immediately write in the next appointment made.
Now, before bedtime, I write a reminder note of the day’s appointments/tasks and tape it to the microwave where I see it when I go to make my morning coffee. Anything I need to take with me the next day (library books, etc), I hang on a doorknob of the back door I’ll be going out of. Any shopping/errand list I tape to the doorknob so I can’t leave without seeing and taking it, then I tape it to the dashboard of my car.
I bought a calendar clock from Amazon which has the time, the time “area” (morning/afternoon/evening), the day of the week, the date (month, day, year). It’s a surprisingly helpful way to stay oriented, especially in winter when you take a nap, wake up, your watch says 6:30 and you’re suddenly not sure if you slept overnight or it’s time for dinner!
As others have mentioned, it works really well and is comforting to do things on the same regular daily schedule. I use a pillbox to be sure I take my meds. I drive and do errands during the week and during regular working hours, so stores and the roads are less crowded.
You will be fine and I wish you all the best.

Jump to this post

Hi Centre,
It is Chris who is having the testing. It takes at least four hours for the testing. I have not scheduled it again. I had it a few years ago and my diagnosis was Mild Cognitive Impairment. I do not see my neurologist until 6 more months. I may discuss getting the testing again. I have been keeping an appointment calendar even when I was working which was a long time ago, That habit is down pat.

I think I use my laptop in the same way that you use your calendar clock. I am on it everyday except when I am in the hospital. In the lower right hand corner, it tells the time, am or pm and on the next line, the date, I have really good pillbox that has separate places for my morning and evening pills. I think that it is very good that you time your errands out during regular working hours. I decided to give up my drivers license because glaucoma has impaired my vision. There are part of my vision that ate blocked off and if a person was in that area, I would not see them! One suggestion that I have for you is if you have not had a recent eye appointment, to go ahead and get one. Glaucoma creeps up on you. I did not know that my vision was getting worse until I saw my opthmalogist and took the field test.

Thank you for writing and please keep in touch!
Carolee

REPLY

I didn’t know where else to put this note.
Back in May a person by the name of Carolee answered my post, and believe it or not, I just read it. I had been writing about mini strokes and she had some questions.
I find myself frequently having difficulty keeping up with my life. My son and wife visited tonight and he was trying to help me wade through 1000 + emails on my phone. Well I’m down to about 14 emails and Carolee’s was one he left.
I feel very bad about not seeing her email and therefore not answering it. I tried to answer her post but a message said something about the link not being valid or words to that effect.
I don’t know if you have a way of passing this on to her, if you do, thank you.
We had a busy summer, my husband had surgery on his big toe, the recovery process was slow, he got an infection in it, back in the hospital for IV antibiotics, then he was having pain in his left shoulder and right rib cage, X-rays showed two blood clots in his lungs and fragments elsewhere, so he was back in the hospital for a few days where they also discovered he had A-fib, so after wearing a heart monitor for 2-3 weeks which was negative, they still said he needed to be on Eliquis for the rest of his life—expensive stuff!
So that’s partly to blame for my missing her email.
Wishing you all well Emyliander.

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