1. < Brain & Nervous System

New to living with Mild Cognitive Impairment (MCI)

Posted by Janie @dougjanehaltom, Nov 20, 2020

I have recently been diagnosed with MCI and I'll be attending Mayo Clinic group on this. Each day just seems to bring me challenges. I have days when I get depressed because I feel like I'm being a burden to others. I will be attending MCI seminar at Mayo Clinic in January. I need help and support in this area.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 20, 2020
In reply to @artscaping "Greetings...welcome to our first reunion, Sarah, @emyliander, and Ellen @helenfrances. It certainly does seem like it..." + (show)
@artscaping

Greetings...welcome to our first reunion, Sarah, @emyliander, and Ellen @helenfrances. It certainly does seem like it has been a long time since we had an update and a timely conversation? Sara, @emyliander, how is your new home? Are you all moved in? I have to ask.....do you have a garden for your flowers? And I hope your daughter is tucked away at her special school or is COVID19 still mandating that she remain with you.

And how about you Ellen, @helenfrances? You, in June, were waiting to complete a withdrawal from Clonazepam and continuing to do research and some shared decision making about your road ahead with your neurologist.

I think in June, we were all talking about how cognitive impairment at the mild stage was affecting our lives. Do our life partners and families recognize our somewhat staggering memories? I think you were looking at a shared support group or class with your husband Sarah. And I was asking you to get a medicine review to make sure those stomach issues were being taken care of.

I will share with you a couple of medical hurdles that I find challenging right now. I found a tiny crunchy nodule on my sternum which ended up being squamous cell carcinoma and was promptly surgically removed. Now I wait like so many others who receive a cancer diagnosis of any kind.

You're not going to believe this one.....I sure didn't until I had spent several days in what I call an itch bomb. It is called neuropathic itch and does its annoying work inside your body. No matter how hard you try you can't scatch it because you can't reach it. So now I am being a guinea pig for different medications to see which might work best without side effects. At the end of two weeks, I make a switch and we see what happens with a new trial.

So...fill me in and fill me up with news and highlights. It seems like things are pretty quiet with the travel restrictions. I must admit I am hungry for a play at the Gutherie. Dinner at Sea Change.....actually sitting in a restaurant might also be nice. Shoot, I would even go to our adopted granddaughter's softball games if I could remember the day. And that is where I will end for tonight. I am noticing greater difficulty with recent memory especially when I am talking and lose my thought. I see people either trying to help me by feeding me the words or looking away as if they haven't noticed.

How are your memories holding up.........do you have any tricks or hacks to share? As Ellen says...write any time. And I say.....do it now or you just might forget. My very best to you both........I would love to hear from you.

May you have peace and ease.
Chris

Jump to this post

@artscaping Hey Chris, my mom has had a few of those squamous carcinomas removed. She goes to regular dermatology skin checks, and she had one that she found removed just a couple months ago. When you catch them early, they are not deep and they get all of it with the Moes surgery. Would a cold ice pack help the itching? I know when my leg was itching inside my cast where I couldn't scratch, I would put ice on my leg above the cast and it helped.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 20, 2020
In reply to @jenniferhunter "@artscaping Hey Chris, my mom has had a few of those squamous carcinomas removed. She goes..." + (show)
@jenniferhunter

@artscaping Hey Chris, my mom has had a few of those squamous carcinomas removed. She goes to regular dermatology skin checks, and she had one that she found removed just a couple months ago. When you catch them early, they are not deep and they get all of it with the Moes surgery. Would a cold ice pack help the itching? I know when my leg was itching inside my cast where I couldn't scratch, I would put ice on my leg above the cast and it helped.

Jump to this post

Hi there @jenniferhunter. You are right......those little squamous things are the ones that like to float around and multiple in your body. It's the basil ones that don't migrate; they just get bigger. So.....I do go twice a year to have everything to do with skin examined. I was such a CA beach girl ....you know, with the iodine in the baby oil.

Thanks for acknowledging the itch. And yes I keep ice gel packs in the freezer. They often mean the difference between sleeping and screaming. I am testing two new topicals......each one for two weeks. I also am using a compression sleeve on my arms so I can't attack them. I remember those itches inside the casts.......when things were healing.

Jay had the Moes surgery on his forehead. That worked well. How are you doing today? Riding the horse yet? I remember how good it smelled to go in the barn at 5:30 a,m, to treat Keo Raff's feet in the summer.

Thanks for checking on me. I so appreciate all of your assistance. Speaking of that, I have just had an amazing MFR treatment. When I understand it better, I will run it by you.
May you have peace and ease.
Chris

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 20, 2020
In reply to @artscaping "Hi there @jenniferhunter. You are right......those little squamous things are the ones that like to float..." + (show)
@artscaping

Hi there @jenniferhunter. You are right......those little squamous things are the ones that like to float around and multiple in your body. It's the basil ones that don't migrate; they just get bigger. So.....I do go twice a year to have everything to do with skin examined. I was such a CA beach girl ....you know, with the iodine in the baby oil.

Thanks for acknowledging the itch. And yes I keep ice gel packs in the freezer. They often mean the difference between sleeping and screaming. I am testing two new topicals......each one for two weeks. I also am using a compression sleeve on my arms so I can't attack them. I remember those itches inside the casts.......when things were healing.

Jay had the Moes surgery on his forehead. That worked well. How are you doing today? Riding the horse yet? I remember how good it smelled to go in the barn at 5:30 a,m, to treat Keo Raff's feet in the summer.

Thanks for checking on me. I so appreciate all of your assistance. Speaking of that, I have just had an amazing MFR treatment. When I understand it better, I will run it by you.
May you have peace and ease.
Chris

Jump to this post

@artscaping Oh Chris, you read my mind. I visited my horse yesterday to clean his hooves and treat them for thrush. I expected this because I couldn't be there for 3 months except for some visits outside the fence, and he has deep clefts that trap stuff. I don't move very fast since my ankle fracture and I put on my old leather hiking boots because that would be better protection if he stepped on me, but I also needed to pay attention and not stand close enough to put myself at risk. When you pick up their foot, sometimes they shift and take a side step and once (before my injury) he did step on my foot that way and I pulled it out before he got his weight on me which bruised my toes.

Yesterday, he saw me drive up and was watching me waiting at the gate. I had to walk from the barn to the paddock without crutches and I worked on using longer strides and I slowed him down so we could match our walk back to the barn where I could treat his hooves and pack them with antiseptic putty. Going back to the paddock, we would stop for grazing, then walk a few more steps, and back in the paddock, he got several apples which he devoured. That was therapeutic for me too for the walking and enjoying the relationship I have with my horse and the lovely sunny day. I do want to get back on him, but I can't do that until I know I can safely dismount which means that my ankle needs to volunteer a bit more effort. At this point, I would not be able to slide off him and land on my ankle. There is a mounting block of stairs which I could use, but I would need someone to hold the horse so he couldn't move if I tried to step down onto the block. It would also hurt. Today, I am still aching from doing this, but those efforts are what build strength when your body says it needs to rebuild to meet the challenges.

Have you tried Arnica gel topical? It's over the counter, and it relieves pain and inflammation. I use it and it works. Perhaps I should introduce my ankle to this magic gel. I have been paying attention to my moles since learning from my husband's experience at the dermatology clinic. His very first visit caught melanoma on his hand and he was off to surgery and a skin graft. I will go for an evaluation myself after I can walk better. I have a mole between toes on the injured foot that would stop my physical therapy progress if they were to remove it now. I also have my next surgery scheduled for dental implants in a few weeks. This should be an easier procedure than what I've already done. It's a juggling act sometimes to schedule a lot of things that need to be done. I do get to look forward to being finished next year and having a permanent restoration in place.

REPLY
fiesty76 | @fiesty76 | Nov 20, 2020
In reply to @artscaping "Greetings...welcome to our first reunion, Sarah, @emyliander, and Ellen @helenfrances. It certainly does seem like it..." + (show)
@artscaping

Greetings...welcome to our first reunion, Sarah, @emyliander, and Ellen @helenfrances. It certainly does seem like it has been a long time since we had an update and a timely conversation? Sara, @emyliander, how is your new home? Are you all moved in? I have to ask.....do you have a garden for your flowers? And I hope your daughter is tucked away at her special school or is COVID19 still mandating that she remain with you.

And how about you Ellen, @helenfrances? You, in June, were waiting to complete a withdrawal from Clonazepam and continuing to do research and some shared decision making about your road ahead with your neurologist.

I think in June, we were all talking about how cognitive impairment at the mild stage was affecting our lives. Do our life partners and families recognize our somewhat staggering memories? I think you were looking at a shared support group or class with your husband Sarah. And I was asking you to get a medicine review to make sure those stomach issues were being taken care of.

I will share with you a couple of medical hurdles that I find challenging right now. I found a tiny crunchy nodule on my sternum which ended up being squamous cell carcinoma and was promptly surgically removed. Now I wait like so many others who receive a cancer diagnosis of any kind.

You're not going to believe this one.....I sure didn't until I had spent several days in what I call an itch bomb. It is called neuropathic itch and does its annoying work inside your body. No matter how hard you try you can't scatch it because you can't reach it. So now I am being a guinea pig for different medications to see which might work best without side effects. At the end of two weeks, I make a switch and we see what happens with a new trial.

So...fill me in and fill me up with news and highlights. It seems like things are pretty quiet with the travel restrictions. I must admit I am hungry for a play at the Gutherie. Dinner at Sea Change.....actually sitting in a restaurant might also be nice. Shoot, I would even go to our adopted granddaughter's softball games if I could remember the day. And that is where I will end for tonight. I am noticing greater difficulty with recent memory especially when I am talking and lose my thought. I see people either trying to help me by feeding me the words or looking away as if they haven't noticed.

How are your memories holding up.........do you have any tricks or hacks to share? As Ellen says...write any time. And I say.....do it now or you just might forget. My very best to you both........I would love to hear from you.

May you have peace and ease.
Chris

Jump to this post

Just finding/reading this thead for the first time and appreciate having a place to share and hear of others also experiencing mild cognitive impairment. What shows up most often for me are those times when I lose the name or place I'm wanting to share with another. It was embarrassing at first but now I'm becoming more accepting that this just happens for me.

Another thing I'm realizing, most recently in moving my phone charger from its customary place to a "safer place after removing everything from a kitchen pantry, is that I can't remember the "safer place". In replacing foodstuffs back into pantry, the charger was found but the exasperation and time spent looking for it unsuccessfully was aggravating and disturbing.

I store other foodstuffs and cleaning supplies on a wall of shelves in my utility room. After rearranging items and changing the locations of some, I'm finding it difficult to remember their "new" homes. It seems after some things get "locked in one place" and are moved, it becomes a challenge to know where they are. Anyone else experiencing similar small challenges like this?

REPLY
lioness | @lioness | Nov 20, 2020
In reply to @dorty "Hi, I am 63 yr old female and have been reading the boards relative to effexor..." + (show)
@dorty

Hi,
I am 63 yr old female and have been reading the boards relative to effexor xr withdrawal (highest dose 2015 375 mg), slow taper to May 2018 took last dose of Effexor XR 37.5 mg May 28th 2018, I started to have some balance dizzy issues in April and then by first week in June I had horrible anxiety (not my usual, had to be from the Effexor withdrawal), nausea, jitters, balance, dizzy issues, depth perception problems, was sensitive to light and sound, thought I was losing my mind --long story trying to make this shorter. Over summer through present time I have had gradual relief, still have some balance, dizzy issues, depth perception and mental challenges, which brings me to my latest diagnosis in subject line. (I was and still am taking wellbutrin XL 300 mg/daily for depression). I am not depressed and my anxiety has been reduced greatly (I think in part due to stopping the Effexor quite honestly), not taking any additional medication for anxiety - don't need it! Praise God!

One of the changes I noted as Effexor was tapered was cognitive decline. Having difficulty multi tasking , making financial spreadsheets, challenging to make sense out of complex situations or interrupting the difference between 3 different options for scheduling (as an example--these are all things I have been really good at -- until April/May of this year). Met with neurologist, (primary care ordered brain MRI which was neg), he ordered over 20 labs and they were all within normal limits and he referred me to neuropsych for testing – showed deficits in visual spatial ability, graphomotor reproduction of complex visual figural information, weakness in divided attention in verbal fluency format, block patterns and abstraction ability. "not severe enough to warrant a diagnosis of dementia but not normal, so mild neurocognitive d/o; predominately executive and right hemisphere pattern of deficit present etiology not clear in light of normal MRI. They are thinking perhaps i am having ophthalmologic migranes/seizures (only experience in right field of vision) and this may be part of what is impacting my cognition.

I will have follow up more specific/detailed MRI in May 2019, in mean time I am "to remain concerned but not consumed over these results", call or make appointment if symptoms increase, (balance, dizziness, cognition etc).

Long story shorter I know that wellbutrin is typically not prescribed for people with known seizure d/o; from what i have read and know (i am RN behavioral health) wellbutrin can lower seizure threshold. Can you help me find any research or information that may relate to effexor withdrawal and or wellbutrin potential impact on cognition or correlation with optical seizures impacting brain function. I will have follow up more detailed MRI..not until may 2019, . I have been trying to put most of this puzzle together myself, I had to request initial MRI in June, request referral to neuro, self referred to opthamology and found my prescription was way to strong — leading to some of my depth perception and balance problems — new script/glasses now helping somewhat.

I appreciate any feedback you may have. Thank you, Barb

Jump to this post

@fiesty76 All the time I put my glasses somewhere at night have to hunt on morning so frustrating same as the remote list it the other night then after a hour of hunting found it .

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 20, 2020

Good afternoon @dougjanehaltom, @erikas Welcome to Connect. We are delighted to have you join us. And thank you Erica for introducing these folks to me. I hope you are getting excited about coming to Mayo in January for the MCI program. And it sounds like it couldn’t be soon enough. I think if I could have any gift for Christmas that I really want and need it would be to be able to cope with my MCI better and become a more organized and contented human.

How long have you been dealing with memory issues? And by the way....are you a male (Doug) or a female (Jane) or someone else? That will help me get everything in the right bucket. I need a little help every once in a while.

At this point in your journey you are working not only on your memory challenges, like appointments and “to do” lists, you are also fighting depression over the thought of becoming a burden to folks in your life.

I wonder if you have been sent any reading assignments or video offerings by Mayo. Perhaps not. If it were me, I would forget what I had read of course. I would need to experience it. It would also be helpful to know if any of your medications or other treatments affect your cognitive efforts. Sometimes just changing the time of day for your dosage can help with the items on your daily calendar or to do list. Foggy brain doesn’t reside here anymore.

Regarding being a burden ...... may I propose that you stay in the present, the here and now. I am fortunate that my life partner has been a therapist and knows all the soft kind reminder messages. He rarely, if ever, becomes agitated or perturbed with my....”I forgets”, “I don’t remembers” and “what did you say?” Sharing your experience with your significant other is a huge help.......my wonderful love goes to all my appointments and supports most of my efforts.

So what do you do right now? Here is what works for me......when I can’t remember why I have gotten up and walked to another room only to stand there dumbfounded I just try this.....quiet my mind and stand very still. If I breathe quietly and wait......all of a sudden it will pop into my brain...oh...yes check on the toothpaste supply. The same strategy also works when trying to remember what someone just said. Be quiet, do not talk, request a moment and wait for the other person’s words to return to your mind. It is really important to answer their question or comment as quickly as possible.

So...those are my prizes for today. I will leave you with this memory. My father had Alzheimer’s and my mother ran smack into cognitive decline. It is reassuring to know that my neuropsychologist has told me that I have skipped Alzheimer’s just by my age. Yippee! I am thankful. Have you had any of the tests? How did you do?

May you be content and at ease.
Chris

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 22, 2020
In reply to @colleenyoung "Hi @emyliander, how are you? It's been awhile since we heard from you. @helenfrances, I'm so..." + (show)
@colleenyoung

Hi @emyliander, how are you? It's been awhile since we heard from you.

@helenfrances, I'm so glad you got the technical issues worked out and were able to log back in. Happy to have you back.

@artscaping, let's get this discussion going again. I miss your posts and conversation here.

Jump to this post

Hey there @colleenyoung, @emyliander, @helenfrances and welcome to @dorty. I know why it is so important to keep Colleen, our director around. If it were not for her, we wouldn't remember when it was reunion time again. And welcome to you @dorty. Hope you enjoy meeting others who have risen above this issue of cognitive decline....finding ways to challenge it, diminish it, and live with it. We have also learned that putting pressure on it from within or without just doesn't do much. So....where are all of you in your journeys? It appears that there have been some postponements, adjustments, and new explorations since we were last together.

Because I know how you are dear lovely folks,........I will go first so you can get a better grasp of what I am talking about. I have some never before happenings to add to my lifetime of experiences. The first one is a "panic attack" when I just lost it while trying to get my taxes in before the last extension. I couldn't remember the instructions from my tax accountant. He couldn't understand why It was so difficult when we are just about to celebrate 30 years of a business relationship. His words: "it's not like we haven't done this before." I stopped and shared my cognitive issues with him. I think that being a numbers person he may not have understood everything and why I waited so long to get it done.

So my revelation was met with concern and compassion. He hung there with me until late at night and repeated every instruction as needed. It took us three days. The middle day was for my recuperation from the panic attack.

O.K. That is my most meaningful MCI encounter. I struggle with directions, concentrating so hard that I create my own anxiety. On Connect, I will see a name I recognize and tell myself....." when I finish this, I want to go back and check-in with her. Of course, I can't find "her" and because I wasn't paying attention I can't even find "it"....the page.

Anxious to connect with you all and to read your additions. I am sure there are both funny and sad ones. That's OK!

May you all have peace and ease.
Chris

REPLY
Janie | @dougjanehaltom | Nov 23, 2020
In reply to @artscaping "Good afternoon @dougjanehaltom, @erikas Welcome to Connect. We are delighted to have you join us. And..." + (show)
@artscaping

Good afternoon @dougjanehaltom, @erikas Welcome to Connect. We are delighted to have you join us. And thank you Erica for introducing these folks to me. I hope you are getting excited about coming to Mayo in January for the MCI program. And it sounds like it couldn’t be soon enough. I think if I could have any gift for Christmas that I really want and need it would be to be able to cope with my MCI better and become a more organized and contented human.

How long have you been dealing with memory issues? And by the way....are you a male (Doug) or a female (Jane) or someone else? That will help me get everything in the right bucket. I need a little help every once in a while.

At this point in your journey you are working not only on your memory challenges, like appointments and “to do” lists, you are also fighting depression over the thought of becoming a burden to folks in your life.

I wonder if you have been sent any reading assignments or video offerings by Mayo. Perhaps not. If it were me, I would forget what I had read of course. I would need to experience it. It would also be helpful to know if any of your medications or other treatments affect your cognitive efforts. Sometimes just changing the time of day for your dosage can help with the items on your daily calendar or to do list. Foggy brain doesn’t reside here anymore.

Regarding being a burden ...... may I propose that you stay in the present, the here and now. I am fortunate that my life partner has been a therapist and knows all the soft kind reminder messages. He rarely, if ever, becomes agitated or perturbed with my....”I forgets”, “I don’t remembers” and “what did you say?” Sharing your experience with your significant other is a huge help.......my wonderful love goes to all my appointments and supports most of my efforts.

So what do you do right now? Here is what works for me......when I can’t remember why I have gotten up and walked to another room only to stand there dumbfounded I just try this.....quiet my mind and stand very still. If I breathe quietly and wait......all of a sudden it will pop into my brain...oh...yes check on the toothpaste supply. The same strategy also works when trying to remember what someone just said. Be quiet, do not talk, request a moment and wait for the other person’s words to return to your mind. It is really important to answer their question or comment as quickly as possible.

So...those are my prizes for today. I will leave you with this memory. My father had Alzheimer’s and my mother ran smack into cognitive decline. It is reassuring to know that my neuropsychologist has told me that I have skipped Alzheimer’s just by my age. Yippee! I am thankful. Have you had any of the tests? How did you do?

May you be content and at ease.
Chris

Jump to this post

Thank you so much Chris I appreciate all the advice I can get. My husband will tell me his schedule for the day and if I don't write it down I don't remember it for 5-10 minutes. A lot of it I feel it's thinking that I'm not going to remember it. I wish I could get over that part of this. That would help me so much. I do write a lot of things down which does help! I am looking forward to the clinic so much. I really need the support and the encouragement. I'm also looking forward to learning different ways that will help me in this as I'm going through this. My husband is Doug and I am Jane.

REPLY
Debbra Williams, Alumna Mentor | @debbraw | Nov 23, 2020

Hi @dougjanehaltom - I'd like to add my welcome to the others. My husband was diagnosed with MCI in 2015 and I can tell you that the HABIT Program at Mayo was one of the single most important steps we took in coping with the diagnosis initially. I hope you and your husband will find it as useful as we did. I'm also going to recommend another resource that you might find useful. It's a blog by Virginia Laken who was also diagnosed with MCI and also went through Mayo's HABIT program. In it, she shares many aspects of her own journey as she has coped with the diagnosis. You can find the blog at this address: https://virginialaken.com/blog/
Wishing you all the best!

REPLY
Janie | @dougjanehaltom | Nov 29, 2020
In reply to @artscaping "Good afternoon @dougjanehaltom, @erikas Welcome to Connect. We are delighted to have you join us. And..." + (show)
@artscaping

Good afternoon @dougjanehaltom, @erikas Welcome to Connect. We are delighted to have you join us. And thank you Erica for introducing these folks to me. I hope you are getting excited about coming to Mayo in January for the MCI program. And it sounds like it couldn’t be soon enough. I think if I could have any gift for Christmas that I really want and need it would be to be able to cope with my MCI better and become a more organized and contented human.

How long have you been dealing with memory issues? And by the way....are you a male (Doug) or a female (Jane) or someone else? That will help me get everything in the right bucket. I need a little help every once in a while.

At this point in your journey you are working not only on your memory challenges, like appointments and “to do” lists, you are also fighting depression over the thought of becoming a burden to folks in your life.

I wonder if you have been sent any reading assignments or video offerings by Mayo. Perhaps not. If it were me, I would forget what I had read of course. I would need to experience it. It would also be helpful to know if any of your medications or other treatments affect your cognitive efforts. Sometimes just changing the time of day for your dosage can help with the items on your daily calendar or to do list. Foggy brain doesn’t reside here anymore.

Regarding being a burden ...... may I propose that you stay in the present, the here and now. I am fortunate that my life partner has been a therapist and knows all the soft kind reminder messages. He rarely, if ever, becomes agitated or perturbed with my....”I forgets”, “I don’t remembers” and “what did you say?” Sharing your experience with your significant other is a huge help.......my wonderful love goes to all my appointments and supports most of my efforts.

So what do you do right now? Here is what works for me......when I can’t remember why I have gotten up and walked to another room only to stand there dumbfounded I just try this.....quiet my mind and stand very still. If I breathe quietly and wait......all of a sudden it will pop into my brain...oh...yes check on the toothpaste supply. The same strategy also works when trying to remember what someone just said. Be quiet, do not talk, request a moment and wait for the other person’s words to return to your mind. It is really important to answer their question or comment as quickly as possible.

So...those are my prizes for today. I will leave you with this memory. My father had Alzheimer’s and my mother ran smack into cognitive decline. It is reassuring to know that my neuropsychologist has told me that I have skipped Alzheimer’s just by my age. Yippee! I am thankful. Have you had any of the tests? How did you do?

May you be content and at ease.
Chris

Jump to this post

Thanks, so much, Chris! I am 70. Does this mean that Iwill just have mild Cognitive impairment or will this go into Alzheimers? I am trying to do everything that I can to avoid getting worse. Is that even possible? I am so thankful for this support group!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.