Support Group for Those of Us Living With Mild Dementia

Diagnosis may be changing…Lewy Body Dementia?
I was diagnosed with Alzheimer’s Dementia (very mild) a few months ago after extensive testing.
Last week I had the final test the, psycho neurological 4 hour test. I spoke the the Psy Neuro this morning. He said my test results were not what one would expect with Alzheimer’s.
He is thinking that perhaps I might have Lewy Body Dementia .
There’s also the possibility of having both types of dementia at the same time.

Anyone have experience with Lewy Body?

I met with my neurologist last week and we reviewed everything. As I said previously, my diagnosis is mild neurocognitive disorder. I did learn there’s no difference between that term and mild cognitive impairment.

I had normal MRI for age. So some age-appropriate level of atrophy. Tests for pertinent genes show I have APOE3 and APOE4. That increases the likelihood I develop Alzheimer’s dementia. The Tao blood levels show I have Alzheimer indications already. It’s coming.

Net-net I am not that interesting to my neurologist any more. Risks of New meds outweigh the benefit for you he says (and I agree). See you in a year.

So where does that leave me?

Today, I struggle most with
* word retrieval
* name recall
* blanking
Blanking is my term for when I suddenly blank on what I'm trying to do. I may be about to google something and i have my phone in my hands and either can’t remember what I want to lookup, or I look at my phone and am not sure what to do next. It’s fleeting - but the most concerning of my journey so far.

*’depression
I have had depression most of my life and take an anti-depressant. But the character is different now. Theres an overtone of futility about it that makes inertia difficult. The Neuropsychologist recommended talk therapy. The Neurologist didn't even respond to that. I guess I will ask my Primary if he knows how to identify options.
* sedentary. Since the surgery for lung cancer I'm on a moving sidewalk between CT scans and pulmonary function tests and my normal RA and my GI doc.. and I tend to just sit down and read. It’s a non productive escape. And I’ve gained 20 pounds in a year - which is certainly not helping anything.

So thats my roller coaster. And I share with all of you to confirm you aren't on a strange island called cognitive disorder by yourself.

Every week i declare this will be the week I will grab this by the horns and crawl out of the abyss - and maybe it will be!

Susan Ellen, your suggestion would be very helpful to my husband as well. Like you, his diagnosis is changing from MCI into Dementia. So many questions…so few answers. It is discouraging. Can I ask if you are still driving? My husband’s doctor has said he will have to quit. My husband’s issues are with remembering future
appointments, recalling names, forgetting where he put things (although he usually remembers after thinking on it awhile…I have that problem myself😊) …but as far as driving and getting around our city he is fine…in fact he is a very good driver. If we drive out of familiar areas, I am his map reader…we work as a great team. If he were not able to drive at this point, I believe he would shut down. This disease is hard enough for him to accept, but he is not at the point to give up his keys. He keeps our place (8 acres) beautiful, he drives a tractor and bush hogs others property…there is still so much he is still fully capable of doing. I live with him, we are both retired, I am with him the most, I believe I am a better judge of his abilities and I would be the one to know when the time has come for him to stop. It seems that now that the word Dementia has entered the diagnosis active life’s over. Your suggestion is a good one because there is no where else to go for answers. I have already learned a lot through Connect and am thankful for that. I would love to hear other’s thoughts on the driving issue.

Pb50, I admire the clarity and courage with which you approach the situation of your life.
I don't remember if you have pets, but I will share that my dog deserves credit for waking me every morning, eager to start our day with a well-established ritual we both enjoy. Then later in the morning we go for a walk, one to two miles, and a second walk most evenings. I walked off 42 pounds last year!
I adopted Hazel at 71 years old (me, not her), the first time I've had my own dog.
We found an adoption agency that is very careful to establish "good fit" between the dog and the person. When you adopt an adult dog you have a good idea of the dog's personality and you don't need to go through 18 months of puppyhood training.
Hazel helps me stay in the present moment, saves me from my ruminating moods. My wife also has a dog, chosen to help with her difficult health and mood issues.
Despite the cost, they are cheaper than medical persons, and are here for us 24/7.

Susan Ellen, your suggestion would be very helpful to my husband as well. Like you, his diagnosis is changing from MCI into Dementia. So many questions…so few answers. It is discouraging. Can I ask if you are still driving? My husband’s doctor has said he will have to quit. My husband’s issues are with remembering future
appointments, recalling names, forgetting where he put things (although he usually remembers after thinking on it awhile…I have that problem myself😊) …but as far as driving and getting around our city he is fine…in fact he is a very good driver. If we drive out of familiar areas, I am his map reader…we work as a great team. If he were not able to drive at this point, I believe he would shut down. This disease is hard enough for him to accept, but he is not at the point to give up his keys. He keeps our place (8 acres) beautiful, he drives a tractor and bush hogs others property…there is still so much he is still fully capable of doing. I live with him, we are both retired, I am with him the most, I believe I am a better judge of his abilities and I would be the one to know when the time has come for him to stop. It seems that now that the word Dementia has entered the diagnosis active life’s over. Your suggestion is a good one because there is no where else to go for answers. I have already learned a lot through Connect and am thankful for that. I would love to hear other’s thoughts on the driving issue.

Labrown, what I hear is that your husband is a person who needs purpose to feel worthwhile. Since he knows how to work the land, that is a strength that may stay with him for a long time, even if he has to stop driving.
I hope he can continue doing what he loves for the rest of his life.