Recently Diagnosed MCI - Questions Posed

hollis

1. Invite your thoughts on my take on MCI diagnosis: having been diagnosed with MCI and experiencing what seems to be a downward progression, having researched pretty thoroughly it seems to me that the best thing(s) I can do are: (a) exercise daily; (b) stay engaged with others - i.e. don't isolate; (c) pursue natural remedies i.e. lionsmane etc (d) find best ways to stay in touch with others like using these forums (e) not pursue deeper medical intervention because the only thing it has to offer is more testing / medicines that have significant side affects that I don't want to experience with no real benefit??? (my first question does not indicate in any way a hopelessness or helplessness but a realistic view of the alternatives and a peace in the midst of the challenges of dementia related challenges)
2. Is it common to find oneself easily exhausted by any sort of mental challenge such as trying to figure something out - how to do this on my computer which previously was just second nature but now it seems too overwhelming to even engage - in other words just trying seems too much? (Heretofore, my whole life I have been a bold "I can do that" person no matter what the challenge but now I am as described easily overwhelmed)
3. I have sought a regular "AA" type connection with others going through these struggles but the only thing I find is online forums such as this and virtual meetings that meet about once a month - are you aware of more personal opportunities to come together on a regular basis with others even if it is virtually for personal engagement and encouragement of one another?
4. My psych eval concluded MCI originating from extreme alcohol abuse (I been sober for a little over 15 years) and multiple head injuries. Is there anyone else here with a similar circumstances who would be willing to discuss your experience?

Thank you for listening to and considering my questions / concerns. Very Sincerely, Hollis

Iris L.

Welcome Hollis to our online support group. I too, have a diagnosis of cognitive impairment not otherwise specified. This means my memory loss and other cognitive changes are due to other causes besides Alzheimer's Disease or the other most common dementias. I have had extensive testing and after an Amyvid PET scan learned that I do not have Alzheimer's Disease at this time.

Nevertheless, the memory medications are helping me, in the area of memory and my speech and reading. My neurologist offered me a trial of Exelon patch, which is similar to oral Aricept aka donepezil. Within a few days I noticed improvement. At my thirty day return visit, I told him I wanted to continue. He then increased my dosage to the therapeutic level, which I have been on ever since, since 2009. I also began Namenda aka memantine in 2009, now I am taking the extended release form. Don't be afraid of these meds, they may or may not help you. Just start with a low dose and increase slowly.

I don't know about lions mane, but there are many threads about aromatherapy, you can do a search.

The habits that you list, exercise and socializing, are part of what we call Best Practices, they also include eating the Mediterranean or MIND diet. This includes fruits and vegetables for antioxidants, fish and nuts for omega-3 fats. You can read more about the diet.

Also continue to stimulate your brain with intellectual activities, such as learning something new. Don't just focus on recall, such as doing crossword puzzles. They have their place, but they are not enough. Make sure you don't have sleep apnea, make sure you get restful sleep. And avoid stress and anxiety! You have to become more disciplined in managing your environment.

The main thing is to make sure that your medical evaluation has excluded dementia mimics. Also, check every medication that you take for memory loss and cognitive side effects. Many common meds cause memory loss, such as diphenhydramine aka Benadryl.

Chronic head trauma from sports or other trauma can impact cognition in later years. There are a few books regarding CTE, you might look for them.

You mention prior alcohol abuse. This probably doesn't apply, but read about Wernicke-Korsakoff dementia. Make sure you are getting sufficient B vitamins and other nutrients.

Fatigue is common. Take it easy on yourself. Take steps to make your life safe and manageable and comfortable. Make accommodations.

Your local Alzheimer's Association may offer an Early Stage Support Group. But be aware, thst initially, I was refused attendance because my diagnosis is not Alzheimer's Disease. But several years later, after much asking, I was finally admitted to a Memory Club. We met monthly until Covid entered our lives. I don't know if they have resumed meeting.

For a brief time, I attended a couple of support groups at my local hospital for post-head trauma patients. I did not have much in common so I stopped. But you might consider. It depends upon what you hope to get out of such a group. Those brain trauma patients were still rehabilitating and hoping for more recovery.

I hope you are not working. Are you retired?

I hope I have answered some questions. Feel free to post often. I am here every day.

Iris

Hugh

> @hollis said:
> Invite your thoughts on my take on MCI diagnosis: having been diagnosed with MCI and experiencing what seems to be a downward progression, having researched pretty thoroughly it seems to me that the best thing(s) I can do are: (a) exercise daily; (b) stay engaged with others - i.e. don't isolate; (c) pursue natural remedies i.e. lionsmane etc (d) find best ways to stay in touch with others like using these forums (e) not pursue deeper medical intervention because the only thing it has to offer is more testing / medicines that have significant side affects that I don't want to experience with no real benefit??? (my first question does not indicate in any way a hopelessness or helplessness but a realistic view of the alternatives and a peace in the midst of the challenges of dementia related challenges)
> Is it common to find oneself easily exhausted by any sort of mental challenge such as trying to figure something out - how to do this on my computer which previously was just second nature but now it seems too overwhelming to even engage - in other words just trying seems too much? (Heretofore, my whole life I have been a bold "I can do that" person no matter what the challenge but now I am as described easily overwhelmed)
> I have sought a regular "AA" type connection with others going through these struggles but the only thing I find is online forums such as this and virtual meetings that meet about once a month - are you aware of more personal opportunities to come together on a regular basis with others even if it is virtually for personal engagement and encouragement of one another?
> My psych eval concluded MCI originating from extreme alcohol abuse (I been sober for a little over 15 years) and multiple head injuries. Is there anyone else here with a similar circumstances who would be willing to discuss your experience?
> Thank you for listening to and considering my questions / concerns. Very Sincerely, Hollis

I am 79 and was diagnosed with MCI 40 days ago and Alz two weeks ago. I am experiencing much of what you describe with one big difference. I will proceed with medical trials. My next appointment is 11/20 where I will learn more. Be glad to share. I just started reading “the First Survivors of Alz” and recommend it. It is a ray of hope in a sea of despair. Good luck. Hugh

GEH

Hi Hollis

I can so relate to the mental challenge exhaustion. When I was still working I really struggled with trying to stay awake at my desk. I worked on a computer most of the 8-10 hours a day I worked and the amount of energy it took to keep as focused as possible to remember what/how to do my job was exhausting. I often found myself taking little unintentional cat naps sitting there only waking only when my fingers pressed to hard on the keyboard and it made a noise that woke me up. I would regularly find myself, fingers hovered over the keyboard, my brain knowing what I wanted to do but not remembering how to do it. I would often have to IM a good friend at her desk and ask how to do the process. Of course all of this caused incredible stress which made things only worse. I no longer work but do use my computer at home. I try to be gentle with myself when I cannot figure out what I am doing. I have learned to help myself by writing a lot of repetitive stuff down so I can look at notes to remind me. I use my phone to take pics of my computer screen to remind myself that I did in fact pay a certain bill (the can't be auto paid) when I all of a sudden go into a panic thinking I did not pay it.

Sorry, I did not mean to blabber on and on. My main point was that you are not alone. Also, I have been taking Memantine for a could of months now and I have found it really seems to help a bit with the brain fog and exhaustion.

GE

Iris L.

Welcome to our online support group, Hugh. I hope you continue to post. Feel free to begin your own thread.

Iris

Mimi50

I know this thread is few months old. My husband right now is not interested in being member. Most of the people who have been diagnosed with AD and dementia. Saw specialists such as neurologist and had further blood work. When my husband was diagnosed the doctor did one memory test in the office. He had MRI the only person that saw the MRI was PCP. The radiologist who took the MRI. After that we saw the PCP and she said he vascular dementia. There was no sleep study done. He had stroke at home four years ago.I can't understand why they never referred him to neurologist ? What I will have to do is be little more persistent in making sure these tests are done. Referrals to specialists as soon as possible. Thank you for sharing information with me. So I can help my DH.

2Hands

https://alzconnected.org/discussion/66853/recently-diagnosed-mci-questions-posed

Hi, I like that you are getting to know MCI, so am I. I do not have your background, but I also get fatigued trying to do computer things. With me it is often learning new things, and how quickly i forget again. I am trying to get a diagnosis. But also, I am on this sight trying to understand and and plan for the future.

lakress1955

What is the most current diagnostics for Alzheimer's? I have had an EEg, cognitive test, bloodwork and lumbar puncture. EEG was abnormal, one blood test- abnormal, cognitive test- abnormal, lumbar puncture positive for Alzheimers. My neurologist put me on memantine and is now offering Leqembi IV every 2 weeks with known potential side effects of brain bleed. Is this the normal diagnostic track and treatment?

Iris L.

Welcome lakress. The diagnosis of Alzheimer's Disease is a rule out diagnosis, after all other possible medical causes of memory loss have been ruled out. We're you tested for low thyroid or low vitamin B12 or other diseases? What blood test was abnormal? Many patients begin with a cholinesterase inhibitor, such as Aricept (donepezil) or Exelon patch (rivastigmine). The use of Leqembi is so new, that I don't know if the use of the cholinesterase inhibitors is prohibited.

Are you part of a clinical trial? How will your response to treatment be assessed?

Tomorrow, I will undergo a limited neurocognitive testing at my neurologist's office. He tests me periodically to see how I am doing. So far, I am stable.

Iris

michflo34

L'utilisation de Leqembi est si nouvelle qu'elle est interdite en Europe, encore plus en France !

Indigal

Hollis,
I don't know if you are still on this forum. I was diagnosed with MCI in April after 2 years of appointments and testing. I have come to a similar conclusion as you about not pursuing more medical intervention. There is not much in the way of treatment and the limited treatments available have a number of possible side effects, some of them life threatening.
I am focusing on exercising, volunteering and eating a healthy diet. I have also been traveling. I decided I would rather spend money on good vacations than medication that is not a cure and has unpleasant side effects.
I had a long conversation with my primary care doctor and he is supportive of my decision. I will be canceling my appointment with the neurologist scheduled for later this month.
I have not found much in the way of support groups either. I have joined one that meets once a month on Zoom that I am enjoying. It is through a University with a memory clinic. If you have an academic medical center in your area, see what they offer in the way of support groups.

Erin