Support Group for Those of Us Living With Mild Dementia

I just had a diagnosis of my Mild Cognitive Impairment starting to progress to Frontotemporal dementia. They said the only certainty is in an autopsy, but my MRI, compared to previous ones, showed gradual increased deterioration of the front part. Surprisingly, the hippocampus (short term memory, located in the rear of the brain) looked healthy. I mainly have trouble with planning & executing plans, & some speech hesitancy & forgetfulness under stress, like socializing.
Although I’m still in the MCI stage, I had a series of mishaps the next day when I ran some errands, not in driving, but from being flustered and nervous. So I think I need to stop driving to the all but the library, which is in a tiny town 5 miles away. ☹️

@susanejw
Hello, I just found this group and am very glad since the caregiver group I've seen is helpful but I am not a care giver. Blood tests scores in April indicate I have most likely have Alzheimer's so I am reeling and frightened. I am reading as much as I find on the disease and trying to get a neurologist to specializes in dementia plus all associated programs. I feel overwhelmed .
I don't know anyone personally who is burdened with this or anything related so it would be a huge comfort to have someone to talk to who knows about this .

@alju Hi, I’m glad you got in touch. Have you been tested in other ways, other than blood? If not, ask your primary care doctor to refer you for testing. I have had to subsequently be driven an hour away for follow-up visits at a neuroscience center at a university hospital. I go every six months. They’ll take it from there, giving you advice, meds, etc. If you have a spouse, they should attend with you.
Also, you should read what you can on reputable sites.
A good motivational book is “Still Me: Accepting Alzheimer’s Without Losing Yourself” by Rebecca Chopp. She wrote it five years after her diagnosis! So there’s hope that you’ll have many good years yet. Good luck!

@susanejw “Still Me” is a very good book. It helped me to understand more of what my husband with Alz is going through.

@susanejw
So far the only other test, ordered by an Ophthalmologist for double vision I was experiencing , was a brain MRI which indicated some shrinking of the brain, and "white matter" changes. He said some brain shrinkage is not unusual with aging (I was 85 early Jan.) but said nothing about the white matter. He suggested I see a neurologist. I have been experiencing memory problems for over a year but attributed it to chronic stress and severe sleep problems. But the weird memory issues were becoming more frequent which I knew had to be more than lack of sleep. Example, I was thinking recently of the a disorder, similar to border line personality disorder, which is commonly misdiagnosed as bipolar disorder. I could NOT remember the word bipolar after several minutes of effort. Total blank. So I Googled it, ok that's it, but 5 seconds later I had forgotten it. It happened several mores times and for days after. I would lie in bed trying to remember the word bipolar but no matter how hard I tried it was not there. This can happen about any word ,,,, common every day things. The immediate forgetting a second, third and forth time are what I cannot grasp.
Another weird thing that's happened several times, mostly when I am tired and it's late in the day, driving along I will suddenly wonder where I am and if I made a wrong turn as I'm driving on a street that I regularly drive on very frequently that is suddenly unfamiliar. That's scary too. As I've begun reading about dementia I see that is referenced as common symptoms.
I have a lot to learn and to accept it appears and fewer happy days ahead.

@labrown
Thanks , with two recommendations I look for the book on Amazon.

@alju Yes, those are definitely troubling symptoms. You need to get tested further. Ask your doctor for a referral. Preferably, have someone else drive you. I can’t help you more than that, but feel free to chat with me or others here.
I’m trying to enjoy nature and reading and my cat and my husband, & not get too depressed. The medicines they’ve given me help with that.

Please consider reading or listening to any of Dr. Dale Bredesen's books. He is a brilliant neurologist offering hope to those with cognitive decline, most importantly if his protocols are begun at the earliest possible stage. It is a personalized program requiring lab work and guidance with habit changes in diet, exercise and lifestyle but they are rigorously documenting the success stories and there are many. There are doctors trained by him now all over the country. His work is controversial so listen and then make your own decision. I hope it can help you.

I can understand what you are experiencing. Such a diagnosis is a tough row to hoe.
I was diagnosed with Lewy body disease three years ago. Melancholy soon overwhelmed me. My neurologist said to live my life as if nothing is wrong and try not to think about it. Yeah, right.
After a period of about a year I came out of my depression and realized he was right.
I go to a therapist to help me handle my changing emotions and cognitive decline. I am changing mentally and the way I used to handle stress doesn’t work anymore.
It’s tough to accept such changes in life and I know i didn’t do anything that caused this disease , but I feel guilty that my wife has to witness my slow decline.
Keep seeing a neurologist and follow there advice.
I now live my life as if nothing is wrong, take my cognitive meds and keep my mind active by hobbies and reading a good bit.
But still, I hear the ticking of the clock.
Regards, Ashley

@ashley43725

What cognitive meds are you taking? Are they helping ?