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Telling people
A couple years ago, had two cornea transplants due to Keratoconus and Fuchs Dystrophy. I have some vision, but it's abnormal. The vision loss was accompanied by hallucinations and a Cognitive decline. I could no longer read or listen to stories. I can listen to shows I watched pre-transplant. I can only read picture books…
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I'm 45 and just got the news
I just tested positive for moderate to frequent corticol amyloid deposition. I don't even know how to feel right now. I went to my doctor for cognitive decline and memory problems, and the pet scan showed this. My doctor didn't tell me very much, so I've been researching online, and i can't stop crying. This was my biggest…
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Maintaining independence during early stages
Hi, my mom (58 years old) was recently diagnosed with mild dementia. My siblings and I are trying to navigate this new reality and find a balance between keeping her safe and allowing her some independence. She’s on medical leave from her job because her performance had been declining. This means she’s home 24/7. Seeing…
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Failed my first test
Since my husband’s diagnosis about a month ago, I have been super focused on not over reacting, arguing, correcting him if he’s wrong, etc. and have been doing really well. Yesterday out of the clear blue he told me he had made a decision. I asked what decision he had made. He told me that he decided he was going to go to…
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My First Community Post
In the words of the poet, "please allow me to introduce myself," although when it comes to "wealth and taste," I'm lacking on both counts. LOL. I was born and raised in the Chicago area, not far from Midway Airport, with spina bifida and hydrocephalus, which caused me to spend a lot of time with doctors. It has been…
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New to group - brother closing in on his dx
It’s been a tough few weeks as I’ve watch my 64 yr old brother (I’m 62) get the dx work up for Alzheimer’s. He had a neuro consult today to review blood and he’s definitely starting treatment for Alzheimer’s asap. He’s like a twin to me and I’ve just felt so sad all day. I haven’t had this sense of grief since our dad…
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Bad day
Sitting here reading through some of the post/discussions, hoping to find someone to connect with. I just feel so alone. Even when I'm with family and friends. I'm anxious about an upcoming appointment with my Neurologist (Thursday)even though Leqembi infusion treatments have been going well. Every morning, I wake up and…
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PPA (primary progressive aphasia) - a type of Alzheimer’s
my sister, age 77, has been diagnosed with “logopenic PPA” and Alzheimer’s - and is living at home with her husband. She can do all the ADL’s, is working out, socializing and seeing a speech therapist. She has no memory loss but struggles to find words, has trouble writing and reading. On Aricept today, however her…
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Female spouse w/young kids looking for mom in similar situation?
I'd love to find a caregiver like myself to exchange texts with, like our own mini support group. This is likely too specific, but ideally it would be a woman whose partner is in the early stages of Alzheimer's (like, very very early stages where most people can't tell) and whose kids are still living at home (our kids are…
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Overwhelmed
New to this discussion and hopeful for some assistance/direction, words of wisdom….my husband was recently diagnosed with EOAD, with lvppa variant. Went to 3 neurologists. Told he is in mild stage. Scored 19, 20 on MOCA. Had a silent stroke but don't know when….cognitive and some immediate memory issues prompted PCP visit…
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New diagnosis, new to group. Having a rough ugly cry day.
I have been very emotional, ugly crying today. Today is hard, others are not- those days I am "numb". I am 41, married for 19 years, I have 5 kids ages 8, 10, 17, 18, 20. I have tested positive for PSEN1 which is one of 3 variants known to cause young onset Alzheimer’s. I have had cognitive symptoms since August 2023. I…
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Conflicting Neuroquant MRI and Petscan
I am have started Kisunla infusions, and after my first treatment I had a “ neuroquant MRI” in order to detect if there has been any brain hemorrhages due to the medication. The results fortunately came back negative and the report also mentioned that I do not have brain atrophy. Other MRIs have said I have more brain…
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My LO has FTD and struggles with accepting support
We have important financial and other things that need to be resolved and my LO can’t seem to get anything done herself and refuses to let me take on the tasks. How can I convince her to accept the situation and let me take control? Just reminding her and getting her to write things down hasn’t worked. Now she is getting…
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Why so hard to get diagnosed?!?
:/ I am so infuriated as to why it is so hard to get doctors to take me seriously!! Why does being highly educated, very intelligent and a health professional make doctors think I am "just stressed out." I would not be ruining my career if I did not know that something is happening to my brain!!
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What Do I Need to Learn?
Hello all, Thank you for your collective wisdom. I've been reading posts and learning. My DH was diagnosed with ALZ a month ago. We're early in the process with MCI right now. He works, drives, cooks, etc. (but is slowing down cognitively and short term memory is poor). I'm taking some time off of work to get some things…
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New Years Eve
How excited was I when we received an invitation to a NYE party from our Sailability Coordinator. I thought this will be great, they understand, we haven’t been out to a party for the last 4 years. When we arrived I noticed the table set for 6 that meant us, the hosts and another couple. We had perfectly cooked medium rare…
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Bredesen randomized controlled trial
I recently listened to an interview on People’s Pharmacy with Dale Bredesen. He mentioned that he is the study chair for a randomized controlled trial for his approach to addressing a treatment approach for MCI or early stage dementia. Here’s a link to the page with more info about the trial…
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New Here - 33 looking for support for mother diagnosed with AD
I am not normally one to reach out for support in this format but I feel very isolated in my mother’s recent Alzheimer’s diagnosis. We have seen her condition worsen over the last few years and last year there was a huge red flag for us when she couldn’t remember opening gifts at Christmas. I was 2 weeks postpartum and…
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Compassionate Use or Expanded Access options
Is anyone getting any therapies through Compassionate Use or Expanded Access programs? I saw a comment from someone in a Facebook group who was considering TB006 a compound being developed by True Binding. So it made me wonder if anyone here has considered it or other experimental options that are in development.
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I need advice or someone to talk to. How did/do you manage what helps?
Earlier this year my father who is a 64 year old veteran was diagnosed with early onset dementia. It’s been very difficult for me. I feel so alone and kinda almost ready to give up but I know I can’t do that. We have been in the hospital for over a month. waiting for a memory care unit at the va to let us know when he can…
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New to forum just diagnosed with Amnestic MCI due to Alzheimers
After 7 months of testing, starting with Parkinson’s, which came back negative I have been diagnosed with MCI due to Alzheimer’s. I have had multiple cognitive tests, neuropsychological testing, blood work for Alzheimer’s bio markers (strongly positve for tau and amyloid) and now 2 positive Pet Scans I started Kisunla last…
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Newly diagnosed with early onset Alzheimer's I'm 59
Im single and work fulltime. I live paycheck to paycheck. I'm in early/mild , kinda crossing over. I have no idea what to expect. Or any kind of timeline. I have debts and need some direction. There is no long/short term disability where I work. I expect a 2 week severance when they find out. How long will i be able to…
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Just got pet results
I’m freaking out because it appears to me that it’s saying I have ad. Now to wait for my appointment to go over my bloodwork and pet results in two weeks. Unfortunately my family has a strong history of early onset dementia, but still, 42 is the youngest in my family if it’s true. I’m hoping doing some research will help…
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Mother with AD has Anxiety
I am new here. My mother was just diagnosed with Alzheimer's in August; but I think she has been struggling for longer than that. She is on Aricept and says that it helps her feel less in a fog. She is still living alone; but I am doing her bills for her. However, she is worrying about EVERYTHING. She makes lists in her…
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Suggestions please
My DH was diagnosed a few months ago with younger onset and we're both struggling with how to process it and move forward. Even though we've been pushing for the diagnosis for several years it's still turned our world upside down. We're in our 40's with kids and I'm just not sure how to navigate or handle everything or…
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New research on the timeline of Alzheimer's
Research is being called "ground breaking" Alzheimer’s May Progress in Two Phases, Transforming Understanding of Brain Damage - CogniFit Blog: Brain Health News
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New person, first post - Trying to be the rock
To say I'm frustrated would be an understatement - my dad was finally diagnosed with dementia/alzheimers along with anxiety, depression, and OCD/fixation. We could sort of see signs of something not being quite right with him a year or so ago and I had to push my mom to get testing done. The first specialist they were…
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It Begins
After my fathers inital diagnosis little while ago without a tear; today it hit me hard. A distant friend that my parents visited (with prior warning of the situation), spoke of how different my dad was generally and how in ~5yrs since last seeing both my parents the changes in my dad. Denial - for the longest time we've…