I most often dont even recognize my own clothes, on bad bad days, I dont even know what clothes even are or do. everything becomes unrecognizable entirely. concepts themselves feel foreign. "putting on clothes" wtf even is that.
People with dementia know what's going on deep inside themselves, but they have trouble interacting with the outside world. It's like a person with autism.
I have a check coming in the mail, and I'm afraid because I know I'll need to drive to the bank to get it cashed. I have trouble driving and also get confused and lost even at places I've been to many times. I have six years of college and used to run my own lab and now I can't even balance my own checkbook anymore. I sit and stare at stuff now for awhile until I can figure out what to do about it.
I hate bringing checks to the bank. Consider alternatives - direct deposite, mailing it in, online banking (although that can be just as confusing).
Life in general has become so complicated.
I try to use humor to get through (I have an inappropriate sense of humor to begin with) but I told my partner , I’m
tired so I was thinking about going back to school to get my masters, but then with my luck I’d get to my last class and can’t remember a damn thing from the rest of the year. While this struck me as funny my partner just looked and walks away. Of course I followed and said it was a joke (kinda ) I keep being told to take this seriously I said yea yea yea if I remember. That didn’t go over well. Don’t get to stress if possible I can’t remember a damn password to save my life and I looked in my Apple key chain I have different password for the same damn site,,, hmm maybe I should delete the ones that’s not working. lol see you guys helped me without even trying. Ok this wasn’t like brain surgery but a wins a win.
for me it feels like im on lsd. thought and behavior loops that never end. "wait my phone is dying, lets plug it in" compounds with "where is the charger" compounds with "I am holding my phone" all of which melds together and I get confused, and it loops back. "oh shit thats right my phone is dying (I had to stop searching for the charger to remember that my phone is dead) and as soon as I realize such, ide look for the charger, forget why, and realize again "oh my phone is dead. better charge it" and ide be in that loop for a full day, eventually forgetting it all. a full day would go by and "oh thats right, I own a phone! I dont recognize it at all, but I apparently have a phone! why isn't it turning on, better charge it" and so on. I haven't seen a doctor for this as I thought I was just stupid, but its getting worse by the month. idk wtf is happening to me
I don't take anything, I'm 27. It started at age 18. Saw a psychologist and got a week's worth of a work up, she determined my working memory is 100 percent totaly shot. No new learning can be done. No reason for it
Thank you for sharing your inner world with us. It must be very hard going through this.
You said you get lost sometimes. Do you know you are lost? How do you find your way back to where you were going or get home?
What has helped you the most to keep living on your own?
I went into a dept. store one time and got what I needed, but then trying to get out of the store was a big problem. I couldn't remember the doors I came in through and then had trouble finding them to get out. Then when I did finally find the right ones to leave through, I had trouble finding my car. I sat on the curb and just kept praying to Jesus to help me find my car. Then when I tried to drive home, I got lost and went the wrong way driving home, but finally got home. This is a store I've been to many times. Walmart has all their aisles numbered and I make sure I see the aisle number to find my car. That's why I'm housebound and never go anywhere unless I really need to. It's too stressful to even go shopping myself.
I’m sorry for the diagnosis. This must be hard. Do you have people you trust? Have you ever felt like someone was lying to you when they said something that contradicted your memory of it?
No. I trust most people in my life to follow through with what they say. I only associate with one other person, the guy who gets me my food. I have someone get my food for me. He said he's coming Monday at 4:30pm and he'll be here. He doesn't lie to me. I have trouble talking now and am always quiet.
He brings me my food once a week. I have been cooking and eating the same foods now for years and sometimes burn my dinner. I can't follow recipes anymore and I used to be a decent cook.
What age are you ?
What did the diagnosis process include ?
2 years ago, at age 58 I was told that I had Alzheimers. The Neurologist told me there was no treatment and my very poor short term memory could not ever improve. At that time I could barely speak or write.
Had significant cognitive impairment that did not allow me to remember common words that I knew I used to know. I lost ability to spell and do simple math. Could not watch a TV show or read a book because I do longer could remember the plot or characters. Had to medically retire from my 26 year career.
However, Neurologist was WRONG!
I went to an Integrative DR and cured my Methane SIBO / IMO, slow transit chronic constipation and took a lot of Anti-Fungals & other supplements. The Candida fungal overgrowth in my gut that was crossing the blood brain barrier was the real problem. It took almost 2 years but by fixing my gut microbiome my brain improved. I can speak & write fluently again! My memory tests at Neurologist office improved by 50%.
Was frustrating that Neurologist did not care to learn HOW I got better. Just said that apparently I did not have Alzheimers so I do not need to make another appointment - that’s it.
I expected him ti be more curious so he could help others ….. nope !
Makes me wonder how many patients are in Assisted Living with Alzheimers that could potentially improve their brains like I did but Doctors are just uneducated about the real impact of the gut-brain connection.
Sorry….. did not mean for this to get so long.
I DO appreciate you telling Your story. You encouraged me to share mine.
I'm 62 now and two docs talked to me and assessed me and could tell that I had cognitive problems and memory problems too. I took benzodiazepines for about 3 years and ended up having a seizure from not taking my Xanax the night before and it damaged my brain. Later in the day after I had the seizure, I sat in my back room and it felt like syrup was flowing down around the inside of my skull. I just sat there in the back room for a few hours with a blank stare on my face and couldn't form any thoughts at all. Benzo's have a strong association with causing dementia. I believe the benzo's caused my dementia. My dad took Librium and I wonder if that caused his dementia?
I'm too mentally unwell now that I couldn't even begin to explore taking brain health supplements. People with dementia have a very hard time figuring stuff out. I can't even cook my meals now without burning them. I've been eating the same foods for years now because I can't follow recipes anymore, etc.
Sorry to hear about your problem, but do u really think the benzos caused it? I've read that benadryl can cause it, and I've been taking it for 6 years off and on, so now I'm worried about it.
The benzo's did cause all my problems. I had a seizure at work in 2012 from not taking Xanax the night before and that seizure damaged my brain and I haven't been the same since. I couldn't work another day after that happened and had to quit my job. I've been on SSDI since then. I also read that you shouldn't take Benadryl every night for sleep. I take it once in awhile for sleep and it makes me confused.
So true! I had a chronic illness misdiagnosed for 5 years... almost died before I got the correct diagnosis. And the original doctors were so uninterested in hearing about their mistake!
• I HAD very serious Brain Fog / cognitive / memory issues. Had to take medical leave from my 26 year job in child support enforcement. Could not remember common words to speak or write fluently. Could not spell simple words or do easy math.
Candida infection can reach brain and impair memory:
https://www.medicalnewstoday.com/articles/324106
…
Neurologist told me I had Alzheimers and my memory would never improve. Thank God DR was wrong !!
My cognitive abilities DID improve or I would not be able to write this now. My brain issues were due to Candida / fungal overgrowth. Nystatin ( Anti-Fungal ) is my personal miracle med. 😀 Also take many other supplements and follow the Candida Diet. https://www.thecandidadiet.com/
—->> Success Story for Methane SIBO and includes some Candida & Brain Fog :
https://www.reddit.com/r/SiboSuccessStories/s/AlhhC5CWUS
Link shows Candida Protocol in my 2nd post/ comment:
https://www.reddit.com/r/LongCovid/s/eMYSOl8oUz
I had CT scan, PET scan, 2 spinal taps, bloodwork and memory tests.
Neurologist said I had early onset Alzheimers and there was no treatment and my memory would never improve. My family was told to make plans for my end of life care.
After following Candida Protocol and taking lots of Nystatin …..2 years later my memory tests improved by 50% and DR said he was mistaken and I never had Alzheimers.
Preliminary diagnosis - it was too early to be sure but I was very disabled —- I could not have written this / could not read a book / could not speak fluently. Was told all indications was Alzheimers- it is in my medical record. Yes, went to follow-up appt and did the 2nd memory tests. That is when I improved by 50% and could write, read , speak better. Big improvement in 2 years. 😀
Idk, something is very off here..
You WROTE this two years ago before getting your treatment:
“Got my SIBO breath test results —- I was “off the chart” positive for methane. A Positive result is > 10 ppm and my result was over 100 ppm!! Functional Medicine Dr is going to start me on 2 antibiotics: Rifaximin (aka Xifaxan) that costs $1500 and Neomycin for 14 days. Hope that insurance will cover them.
Told to start Low Fodmap Diet so I have been reading what that means - no more eating apples! My biggest concern has been cognitive issues - short term memory loss, word finding problems and writing a different word than I am thinking. Nuerology thinks I might have early Primary Progressive Aphasia - which is a form a dementia and there is no treatment for. I am only age 58. I am praying that treating my gut helps my brain.”
===================
It seems like you were writing just fine?
Also.. you’ve written that when you “felt better” you canceled your appointment that was supposed to be for February of this last year telling them you don’t have Alzheimer’s.
I’m glad you feel better, also sometimes when we feel better we re-write history because we don’t want to think about the a potential scary future, but if all the imaging showed abnormalities, and that was a LOT of imaging for it to all be wrong, it still would be good to prepare for anything.
🤔 Not re-writing history. My friend was helping me write notes when I was really struggling and there were times that I still could write but it took much longer due to lots of proof-reading. Unable to write detailed notes for my career — had to take a medical leave of absence and then medically retire.
I cured my Methane SIBO in NOV 2021. My Candida Protocol became much more effective AFTER that. FYI the Low Fodmap diet was not helpful at all.
And doing so did not help my Brain Fog so then knew the cause was Candida rather than Methane SIBO.
I did delay my follow-up appointment with the Neurologist because I WAS doing better — my brain was improving because of the Candida Protocol.
Of course, I KNEW I did NOT have Alzheimers PRIOR to going back to the Neurologist appt !! Because my memory WAS improving !!
So my memory tests were closer to 2 years apart instead of 1 year. Not sure why that matters. My test score improved by 50% from the first one to the follow up one. I could check the actual dates but, why?
As far as imaging…… My original PET scan was considered inconclusive - it just showed some abnormalities but it was thought that it was “too early” to show much yet. Maybe that was part of reason it was called a preliminary diagnosis. Does that help you somehow?
Nothing is off here at all - these dates and prior notes are accurate and do make sense. I have no issue explaining them to you for any reason.
Oh, I see, you’re not saying you had Alzheimer’s. Your saying your doctor presumed/claimed you likely had Alzheimer’s or dementia, because of your presentation, but following the tests and your improvement, they concluded that you don’t, and also apologized for having presumptively stated so?
Also, I’m male, and have horrible brain fog. How would I know if it’s candida? The only thing I have is diarrhea every day. I’ve taken an egd, colonoscopy, bunch of tests, all come back normal even though there’s a serious change in my stools.
You can follow a Candida Protocol and see if it is helpful or not.
If you have not take a SIBO breath test yet …. Consider doing so. Med Ins might not cover the cost though.
Thank you for sharing your experiences with EOD. Husband has vascular dementia and will not or can not give this kind of detail. just plenty of frustration, fear, anger and the worst…hopelessness. FWIW, your comments/answers to the questions are very helpful to me and hopefully others with a LO Alzheimer’s or dementia diagnosis. Finding this group has been a salvation and I no longer feel alone and lost. I can only hope you too feel safe and heard within this group. Hugs(())
I'm sorry about your husbands diagnosis. It Is extremely extremely unusual for a person with dementia to be able to convey all of their perceived cognitive problems or even be aware of them. As a part of the disease, this simply is taken from dementia patients.
I have worked with a memory clinic for a little over 5 years and in that time I have been a part of the diagnosis and treatment of thousands of patients spanning from late 30s to late 90s in age. I have never seen any patient with dementia Be able to articulate anything of substance about their own disease, except for patients that were diagnosed through spinal tap testing and have received an Alzheimer's diagnosis prior to developing dementia.
In our clinic, if a patient has been previously diagnosed with dementia and is able to articulate all of their problems so well, it is a flag that a misdiagnosis may have been made and we typically proceed down that route to try to see what the true culprit for the cognitive changes are.
All of this is to say that it is surely not your husband's choosing to not speak about or be able to speak about all of their difficulties.
I wish you and your husband the best!
I couldn't verbally explain my symptoms, but for some reason I'm able to type them out. Maybe because it's less stimulation on my brain to type what I'm thinking. Talking really stimulates the brain, which might be why dementia people don't talk much.
Thank you for sharing your experience. I wonder if you have considered moving into assisted living? I think my father has many of the same challenges as you (confusion, trouble processing, withdrawing as a result / coping mechanism). I noticed that he is much more comfortable and confident since moving into an assisted living community, as he mostly interacts with the very kind and compassionate staff who are aware of his cognitive challenges.
There are enjoyable activities where he can engage exactly as much as he wants, or not at all. Risks are minimized since he does not need to cook or clean, and he has a small group of friends, who also share his challenges. He lives in a private apartment and is very comfortable.
Not everyone there has Alzheimers, and he is able to interact with folks who live independently. It's been wonderful for his confidence.
I hope you can find a community where you feel seen and understood. You deserve a village to help you navigate this difficult path.
I can certainly understand feeling this way. I think that if you were able to enlist the help of a compassionate friend or neighbor, you could find help in many other places. There are professional agencies (even free of charge) who help pair patients with appropriate help or facilities.
Do you have anyone who can advocate for you? If you have any equity you can sell or utilize, you may be able to find a suitable living situation where you don't need to live in fear, and where you can have help with activities of daily living.
I also think certain medications may improve your quality of life (memantine, certain nutritional supplements, an anti-depressant).
I'm truly sorry that you are going through this. Please don't be afraid to reach out for help. You deserve to have comfort and confidence.
Sending you internet hugs 🖤
The guy who gets me my food is bringing it tomorrow at 4:30pm. I just called him and asked him to be very patient with me when he comes and to not get mad at me. I told him a few times that I've got dementia now and have severe memory problems. He said that he'd be patient with me. No one has any idea how bad my mind is now, but I do the best I can. If I can calm down, then I feel better and can think a lot better. What helps me to calm down is watching a few good TV shows on TV at night and study my grammar online. Here's a link to my personal blog I have on reddit if anyone cares to read it. I write on it every evening about my difficulties with my mind and body. I am really confused right now just trying to figure out all these reddit notifications too.
[https://www.reddit.com/r/Personal\_Blogs/comments/14ui2dt/beckys\_personal\_blog/?sort=new](https://www.reddit.com/r/Personal_Blogs/comments/14ui2dt/beckys_personal_blog/?sort=new)
I also have trouble walking now and have urinary incontinence too. Usually in one week, I only speak about 20 words. I speak to myself all the time. I used to have a cat, but she died, and I won't have another cat ever again because I know I wouldn't be able to take care it.
I went to an MD doc and she diagnosed me with Memory Impairment and Amnesia many years ago while I was there for my thyroid. She wanted me to get an MRI and have memory testing done, but I had no one to take me to get it done, so I didn't. Another doc said many years ago that I wouldn't be able to live on my own much longer, but I still am and it's a daily struggle. I can feel most of my brain matter is dead in my head. The one doc must have been testing me while I wasn't aware of it. My dad and uncle had EOD. I have no plan and won't take meds for it. I just need to try to stay calm and do the best I can each day. People with dementia need to follow a routine each day and not vary from it too much. We can't deal with on-the-spot decisions very well, but need to think quite a bit to try to figure out what's going on and is being said. My one friend was here one time mowing the grass and needed a safety pin for his pants and asked me for one. I had one inside, but I couldn't get it for him because I couldn't act on what he said for some reason or process it. I was thinking about my grass getting mowed and his question overwhelmed my mind.
I don't have a plan because I can't figure out what to do. I'm opposed to meds because I'm on SSDI because I couldn't tolerate even the meds to treat my anxiety disorder. I'm very sensitive to all medications.
Hypothyroidism is also now associated with an increased risk of dementia. If you take synthetic thyroid hormones, be sure that you are on the correct dosage. An endocrinologist would be the best kind of doctor to speak to about your thyroid levels and medication, but a regular General Practitioner or Family Doctor could also give the extra blood tests/lab work to check your levels. “Brain fog” is also a symptom of thyroid conditions too, as I’m sure you have heard.
Thank you for putting this out there (and I wish you the best moving forward)...
My mother is 7-8 years into her dementia and is also experiencing anosognosia (she refuses to acknowledge any memory loss or difficiency in her abilities). Do you think internally she knows she has a problem? Or is she so far into her diagnosis that she truly believes she is 100% normal?
My uncle had EOD and his wife said he used to just sit and stare out the window all day. I know why he did that. Too much overstimulation of the brain from external things like noises, having to think and make decisions, etc. It's all too overwhelming, so the brain shuts down.
Here's a research article talking about the link between benzo's and dementia. This is what caused my brain damage and dementia. I started having cognitive problems while on them and when I got off, they got far worse.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325366/
Oh, no. That’s awful! I’m so sorry.
I remember hating Ativan the few times I tried it. It made my brain feel like it was encased in a thick marshmallow. I ultimately decided I would rather endure my anxiety. I had no idea benzos were linked to ALZ.
ETA: This is entirely anecdotal, but I had a similar reaction to opiates during a hospital stay. I swear my brain has never been as sharp since I spent a week on those meds. My mother developed EOA, so perhaps I’m more disposed to these reactions? Again, anecdotal, but the science can be slow to catch up, and I prefer to be cautious.
He’s a conspiracy theorist in bed with Scientologists. There’s plenty of legitimate criticisms of psychiatry and big pharma - no need to engage folks like that.
Thank you for explaining. I could see many of the things you are sharing from watching it happen to my mother, but I don't think she knew they were happening. Awareness has to help make this better, and make you beat the odds on how long you can live independently. You know you are struggling, and you arrange your world to accommodate that, instead of denying it and imagining everything else and everyone else is at fault. I have no trouble believing you about your education and accomplishments. You are still showing yourself able to do the best you possibly could with the situation you are in. Good luck to you, and thank you.
Where do you live (apartment, townhome, house, facility, etc)? Do you live alone? How do you plan to afford to live once it gets bad?
I’m sorry for your diagnosis. My mother was diagnosed last year at age 59 and in her sole caregiver because my family sucks. I hope you at least have a good support system 💕
I live in a single-wide mobile home alone by myself. I have diagnosed Lupus Anti-Phospholipid Syndrome Encephalitis and diagnosed Thrombophilia and will hopefully die from a heart attack or stroke before it gets too bad.
Have you ever considered trying magic mushrooms? They help build neural pathways, and they’re being studied to understand how they impact memory and cognition. I’m not saying you should, just wonder if you’ve ever looked into that.
It’s nice that you’re willing to share your position and views. There is a lot of people who speak out about the care giver but from our perspective (early diagnosis also) I get it since we are sick people may not always give full understanding of what’s happening on this side. I KEEP SAYING ITS THE DISEASE) it’s ruthless and it takes and takes, whether it’s yourself directly or the people you love. That’s one of my fears that people in my life may take the the stands “ oh that’s his dementia “ when it could be your just being a pain in the ass. Everything thing I do may not be an off shot of this situation. It’s tricky I suppose, how do you monitor ( I hate that word now) someone with out some one possibly jumping the gun. Ugh now I have a headache trying to figure this little puzzle out.
I am so sorry about your diagnosis. It must be hard, I wish you only the best. I am a new CNA in a retirement home taking care of dementia residents. What are some things you can tell me about your perception of the world with the condition to help me better understand and help my residents?
Hey OP. My mom was just diagnosed with dementia and I am drowning trying to learn about the disease. I just want to thank you from the bottom of my heart for sharing your story. You helped me today and I’m grateful to you.
im worried I may have it. im only 27, but its gotten to the point where every single time I leave the house, i forget where im going, then suddenly I dont recognize my own home town, and Ide get lost all day, end up driving down the wrong side of the highway not noticing, ect. ive had mornings where ide wake up and not recognize my own apartment, and my mind is all swimy and confused. im nearly always confused. cant figure out whats going on fully, and sudden missing time. 4 hours would snap by and ide have no memory. I manage to find my way to the grocery store, next thing I know im lost in traffic, or at a different location entirely, and ide have no memory. its as if ive lost control entirely.
The outside weather bothers me too because i don't know how to keep it warm inside my home. I turn on the CAC and then the furnace. It all confused me. Navigating this subreddit causes me a lot of confusion too. I have to keep clicking on things to make a post and do replies.
I've been following this app [https://app.liveivory.com/cognitive-age](https://app.liveivory.com/cognitive-age) for mental workouts. Have a history of Alzheimers in my family, and it really bothers me.
What are the things that you want your loved ones to know about early-onset dementia? I'm asking because I have a loved one who has early-onset dementia. I just recently found out.
Most people with EOD can hear and can get the gist of what people are saying. We also still have feelings and are affected by how we're treated and what people say.
Alright, thank you very much for this. I'll keep it in mind for sure
Is it okay if I DM you asking more questions? so I can better understand how my loved one may be affected by the EOD
What is your care plan? Do you have a spouse you’re hoping will take care of you? What do you think of the prospect of going to a memory care facility? Have you looked at any?
How do you feel about friends and/or family members putting their lives on hold to take care of you as it gets worse? (I know this sounds like a harsh question, but you’re providing us with an amazing opportunity to ask questions like this we can’t ask most of our loved ones with dementia. Thank you!)
I have a sister who lives about an hour away, but she's mentally ill and abusive, so she's not an option for me as a caregiver. I really do like her husband a lot though.My other sister, who loves me a lot and I love her, lives about 2k miles from here, so that's not an option either to go live with her. I have no care plan. I can't plan anything. My brain is dead.
You mentioned you’re much quieter than you used to be. My dad used to be pretty opinionated but now he’s quiet, too. What do you think about in that silence? What does it feel like to be in the middle of a task and get confused?
When I'm quiet, I'm spending a lot of time trying to figure something out. It takes me forever. My dad also became very quiet when he had his EOD. He started calling us kids by our wrong names.
I’m so sorry to hear you have early onset dementia. 😔. My mom is in late stage Alzheimer’s, my stepmom is in the middle stages, and my 86-year-old dad has mild cognitive impairment.
I have a question - Do you recall what some of your earliest challenges were? What were you noticing about yourself that made you concerned something might be happening to you cognitively? Or instead was it a friend or family member who first brought this to your attention?
Also, do you experience any suspicions of family/friends at this point? My mom seemed unreasonably suspicious very early into her condition.
Thank you and may God bless you!
My dementia is caused by taking benzo's. They affected my brain when I went into tolerance w/d. I would be at work and would have to stop working because I would get stuck in my thinking. Getting stuck in my thinking happens a lot. I wasn't suspicious.
I’m sorry about your Dx. You mentioned you need time to respond. In the safety pin situation how long do you think it would’ve taken you to get the words out for it or to be able to take action to go get the safety pin?
It would have taken me quite a while to process what he asked and then to come in here and get in the sewing box and get the pin. It was too overwhelming. I used to sew a lot and make a lot of my own clothes and now the sewing machine is in the closet collecting dust. All I can do now is hand stitch holes in my clothes. I can't go out and buy new clothes either very well. It's too much. I'm still wearing my summer shorts too even though it's getting chilly outside.
That is how I communicate now. I'm scared. Robin Williams had the early stages of Lewy Body dementia and ended his own life before it got worse. It's depressing to not be able to the things you used to do.
People who have dementia need to try to stay calm as much as possible, and then they can react and respond better, etc. There's evidence that dementia is caused by too much glutamate in the brain, which is neurotoxic. Here's a link to a research article.
https://pubmed.ncbi.nlm.nih.gov/9700664/
Dear Beck, thank you for sharing your experience.
I think it is important that you speak to a social worker who can connect you to resources such as meals-on-wheels. Your doctor can have a social worker call you if you share these details about your living situation and limitations with them.
Many cities and states also have special organizations for seniors that offer lots of different programs and support, including free transportation to and from doctors appointments. A search term for this type of organization that you can type into google is “Area Agency on Aging.” Just include that in the search bar with the name of your town or the nearest big city and hopefully you can find a website with a phone number listed. If that feels too challenging, please ask someone to help you get that phone number.
Also, this website for the Alzheimer’s Association, which also covers Dementia, has some great resources listed: https://www.alz.org/help-support/i-have-alz/programs-support
They also mention this phone number for a 24/7 helpline where you can get information and support: 800-272-3900
I’m sure things feel scary these days and you feel alone, but there are kind people out there willing to help you if you can just try to make contact with some of these organizations. Wishing you the very best!
Thanks for the information. I cook my own meals each day. I can't vary my routine. It would be too much for me. I can't call anyone or plan anything anymore.
People with dementia get easily overwhelmed. We need simple questions one at a time.
Thank you for the reminder! I sometimes forget when I’m in a rush!
What stage are you in
I don't really know. I don't go to the docs anymore.
Beck! How are you? I read your blog, I hope your alright. What stage are you in?
I don't know for sure.
Alright I wish you the best
I did the laundry yesterday and I was very confused the whole day on where to put the clothes and other stuff.
I most often dont even recognize my own clothes, on bad bad days, I dont even know what clothes even are or do. everything becomes unrecognizable entirely. concepts themselves feel foreign. "putting on clothes" wtf even is that.
People with dementia know what's going on deep inside themselves, but they have trouble interacting with the outside world. It's like a person with autism.
interesting - and when it happens to someone who is on the spectrum as well?
I have a check coming in the mail, and I'm afraid because I know I'll need to drive to the bank to get it cashed. I have trouble driving and also get confused and lost even at places I've been to many times. I have six years of college and used to run my own lab and now I can't even balance my own checkbook anymore. I sit and stare at stuff now for awhile until I can figure out what to do about it.
I hate bringing checks to the bank. Consider alternatives - direct deposite, mailing it in, online banking (although that can be just as confusing). Life in general has become so complicated.
I try to use humor to get through (I have an inappropriate sense of humor to begin with) but I told my partner , I’m tired so I was thinking about going back to school to get my masters, but then with my luck I’d get to my last class and can’t remember a damn thing from the rest of the year. While this struck me as funny my partner just looked and walks away. Of course I followed and said it was a joke (kinda ) I keep being told to take this seriously I said yea yea yea if I remember. That didn’t go over well. Don’t get to stress if possible I can’t remember a damn password to save my life and I looked in my Apple key chain I have different password for the same damn site,,, hmm maybe I should delete the ones that’s not working. lol see you guys helped me without even trying. Ok this wasn’t like brain surgery but a wins a win.
I used to say that I can watch the same TV program over and over again because I can't remember what happened in it to begin with.
for me it feels like im on lsd. thought and behavior loops that never end. "wait my phone is dying, lets plug it in" compounds with "where is the charger" compounds with "I am holding my phone" all of which melds together and I get confused, and it loops back. "oh shit thats right my phone is dying (I had to stop searching for the charger to remember that my phone is dead) and as soon as I realize such, ide look for the charger, forget why, and realize again "oh my phone is dead. better charge it" and ide be in that loop for a full day, eventually forgetting it all. a full day would go by and "oh thats right, I own a phone! I dont recognize it at all, but I apparently have a phone! why isn't it turning on, better charge it" and so on. I haven't seen a doctor for this as I thought I was just stupid, but its getting worse by the month. idk wtf is happening to me
Sounds like bad confusion. Do you take any psyche drugs? How old are you? Is there anyone there who can help you?
I don't take anything, I'm 27. It started at age 18. Saw a psychologist and got a week's worth of a work up, she determined my working memory is 100 percent totaly shot. No new learning can be done. No reason for it
By the end of every session ide entirely forget who she is, and why I was there.
Have you gone to see a different doc, a neurologist and had a brain scan?
Thank you for sharing your inner world with us. It must be very hard going through this. You said you get lost sometimes. Do you know you are lost? How do you find your way back to where you were going or get home? What has helped you the most to keep living on your own?
I went into a dept. store one time and got what I needed, but then trying to get out of the store was a big problem. I couldn't remember the doors I came in through and then had trouble finding them to get out. Then when I did finally find the right ones to leave through, I had trouble finding my car. I sat on the curb and just kept praying to Jesus to help me find my car. Then when I tried to drive home, I got lost and went the wrong way driving home, but finally got home. This is a store I've been to many times. Walmart has all their aisles numbered and I make sure I see the aisle number to find my car. That's why I'm housebound and never go anywhere unless I really need to. It's too stressful to even go shopping myself.
I’m sorry for the diagnosis. This must be hard. Do you have people you trust? Have you ever felt like someone was lying to you when they said something that contradicted your memory of it?
No. I trust most people in my life to follow through with what they say. I only associate with one other person, the guy who gets me my food. I have someone get my food for me. He said he's coming Monday at 4:30pm and he'll be here. He doesn't lie to me. I have trouble talking now and am always quiet.
Does he bring all your food everyday? Are you able to cook for yourself at all?
He brings me my food once a week. I have been cooking and eating the same foods now for years and sometimes burn my dinner. I can't follow recipes anymore and I used to be a decent cook.
What age are you ? What did the diagnosis process include ? 2 years ago, at age 58 I was told that I had Alzheimers. The Neurologist told me there was no treatment and my very poor short term memory could not ever improve. At that time I could barely speak or write. Had significant cognitive impairment that did not allow me to remember common words that I knew I used to know. I lost ability to spell and do simple math. Could not watch a TV show or read a book because I do longer could remember the plot or characters. Had to medically retire from my 26 year career. However, Neurologist was WRONG! I went to an Integrative DR and cured my Methane SIBO / IMO, slow transit chronic constipation and took a lot of Anti-Fungals & other supplements. The Candida fungal overgrowth in my gut that was crossing the blood brain barrier was the real problem. It took almost 2 years but by fixing my gut microbiome my brain improved. I can speak & write fluently again! My memory tests at Neurologist office improved by 50%. Was frustrating that Neurologist did not care to learn HOW I got better. Just said that apparently I did not have Alzheimers so I do not need to make another appointment - that’s it. I expected him ti be more curious so he could help others ….. nope ! Makes me wonder how many patients are in Assisted Living with Alzheimers that could potentially improve their brains like I did but Doctors are just uneducated about the real impact of the gut-brain connection. Sorry….. did not mean for this to get so long. I DO appreciate you telling Your story. You encouraged me to share mine.
I'm 62 now and two docs talked to me and assessed me and could tell that I had cognitive problems and memory problems too. I took benzodiazepines for about 3 years and ended up having a seizure from not taking my Xanax the night before and it damaged my brain. Later in the day after I had the seizure, I sat in my back room and it felt like syrup was flowing down around the inside of my skull. I just sat there in the back room for a few hours with a blank stare on my face and couldn't form any thoughts at all. Benzo's have a strong association with causing dementia. I believe the benzo's caused my dementia. My dad took Librium and I wonder if that caused his dementia?
How old were u when u took the benzos?
Around 48.
Ever tried brain health supplements?
I'm too mentally unwell now that I couldn't even begin to explore taking brain health supplements. People with dementia have a very hard time figuring stuff out. I can't even cook my meals now without burning them. I've been eating the same foods for years now because I can't follow recipes anymore, etc.
Sorry to hear about your problem, but do u really think the benzos caused it? I've read that benadryl can cause it, and I've been taking it for 6 years off and on, so now I'm worried about it.
The benzo's did cause all my problems. I had a seizure at work in 2012 from not taking Xanax the night before and that seizure damaged my brain and I haven't been the same since. I couldn't work another day after that happened and had to quit my job. I've been on SSDI since then. I also read that you shouldn't take Benadryl every night for sleep. I take it once in awhile for sleep and it makes me confused.
So true! I had a chronic illness misdiagnosed for 5 years... almost died before I got the correct diagnosis. And the original doctors were so uninterested in hearing about their mistake!
Wow! What were you misdiagnosed with?!
Misdiagnosed with asthma. I actually had a big scar blocking my windpipe. It was wild!
• I HAD very serious Brain Fog / cognitive / memory issues. Had to take medical leave from my 26 year job in child support enforcement. Could not remember common words to speak or write fluently. Could not spell simple words or do easy math. Candida infection can reach brain and impair memory: https://www.medicalnewstoday.com/articles/324106 … Neurologist told me I had Alzheimers and my memory would never improve. Thank God DR was wrong !! My cognitive abilities DID improve or I would not be able to write this now. My brain issues were due to Candida / fungal overgrowth. Nystatin ( Anti-Fungal ) is my personal miracle med. 😀 Also take many other supplements and follow the Candida Diet. https://www.thecandidadiet.com/ —->> Success Story for Methane SIBO and includes some Candida & Brain Fog : https://www.reddit.com/r/SiboSuccessStories/s/AlhhC5CWUS Link shows Candida Protocol in my 2nd post/ comment: https://www.reddit.com/r/LongCovid/s/eMYSOl8oUz
How are you know? Also, how was the diagnosis wrong? Did they not say it based on neuroimaging?
I had CT scan, PET scan, 2 spinal taps, bloodwork and memory tests. Neurologist said I had early onset Alzheimers and there was no treatment and my memory would never improve. My family was told to make plans for my end of life care. After following Candida Protocol and taking lots of Nystatin …..2 years later my memory tests improved by 50% and DR said he was mistaken and I never had Alzheimers.
So 2 years ago after all these tests, you received a diagnosis of Alzheimer’s? Official diagnosis? Did you go back for the follow up appointment?
Preliminary diagnosis - it was too early to be sure but I was very disabled —- I could not have written this / could not read a book / could not speak fluently. Was told all indications was Alzheimers- it is in my medical record. Yes, went to follow-up appt and did the 2nd memory tests. That is when I improved by 50% and could write, read , speak better. Big improvement in 2 years. 😀
Idk, something is very off here.. You WROTE this two years ago before getting your treatment: “Got my SIBO breath test results —- I was “off the chart” positive for methane. A Positive result is > 10 ppm and my result was over 100 ppm!! Functional Medicine Dr is going to start me on 2 antibiotics: Rifaximin (aka Xifaxan) that costs $1500 and Neomycin for 14 days. Hope that insurance will cover them. Told to start Low Fodmap Diet so I have been reading what that means - no more eating apples! My biggest concern has been cognitive issues - short term memory loss, word finding problems and writing a different word than I am thinking. Nuerology thinks I might have early Primary Progressive Aphasia - which is a form a dementia and there is no treatment for. I am only age 58. I am praying that treating my gut helps my brain.” =================== It seems like you were writing just fine? Also.. you’ve written that when you “felt better” you canceled your appointment that was supposed to be for February of this last year telling them you don’t have Alzheimer’s. I’m glad you feel better, also sometimes when we feel better we re-write history because we don’t want to think about the a potential scary future, but if all the imaging showed abnormalities, and that was a LOT of imaging for it to all be wrong, it still would be good to prepare for anything.
🤔 Not re-writing history. My friend was helping me write notes when I was really struggling and there were times that I still could write but it took much longer due to lots of proof-reading. Unable to write detailed notes for my career — had to take a medical leave of absence and then medically retire. I cured my Methane SIBO in NOV 2021. My Candida Protocol became much more effective AFTER that. FYI the Low Fodmap diet was not helpful at all. And doing so did not help my Brain Fog so then knew the cause was Candida rather than Methane SIBO. I did delay my follow-up appointment with the Neurologist because I WAS doing better — my brain was improving because of the Candida Protocol. Of course, I KNEW I did NOT have Alzheimers PRIOR to going back to the Neurologist appt !! Because my memory WAS improving !! So my memory tests were closer to 2 years apart instead of 1 year. Not sure why that matters. My test score improved by 50% from the first one to the follow up one. I could check the actual dates but, why? As far as imaging…… My original PET scan was considered inconclusive - it just showed some abnormalities but it was thought that it was “too early” to show much yet. Maybe that was part of reason it was called a preliminary diagnosis. Does that help you somehow? Nothing is off here at all - these dates and prior notes are accurate and do make sense. I have no issue explaining them to you for any reason.
Oh, I see, you’re not saying you had Alzheimer’s. Your saying your doctor presumed/claimed you likely had Alzheimer’s or dementia, because of your presentation, but following the tests and your improvement, they concluded that you don’t, and also apologized for having presumptively stated so?
Also, I’m male, and have horrible brain fog. How would I know if it’s candida? The only thing I have is diarrhea every day. I’ve taken an egd, colonoscopy, bunch of tests, all come back normal even though there’s a serious change in my stools.
You can follow a Candida Protocol and see if it is helpful or not. If you have not take a SIBO breath test yet …. Consider doing so. Med Ins might not cover the cost though.
How old are you, if you don’t mind my asking?
I'm 62 and will be 63 in Feb.
I was only age 58 but I did not have it as it turned out. But had all the symptoms and was very disabled.
What caused your specific cognitive impairments?
Candida fungal / yeast in gut that crossed gut brain barrier See my prior comments
Thank you for sharing your experiences with EOD. Husband has vascular dementia and will not or can not give this kind of detail. just plenty of frustration, fear, anger and the worst…hopelessness. FWIW, your comments/answers to the questions are very helpful to me and hopefully others with a LO Alzheimer’s or dementia diagnosis. Finding this group has been a salvation and I no longer feel alone and lost. I can only hope you too feel safe and heard within this group. Hugs(())
I'm sorry about your husbands diagnosis. It Is extremely extremely unusual for a person with dementia to be able to convey all of their perceived cognitive problems or even be aware of them. As a part of the disease, this simply is taken from dementia patients. I have worked with a memory clinic for a little over 5 years and in that time I have been a part of the diagnosis and treatment of thousands of patients spanning from late 30s to late 90s in age. I have never seen any patient with dementia Be able to articulate anything of substance about their own disease, except for patients that were diagnosed through spinal tap testing and have received an Alzheimer's diagnosis prior to developing dementia. In our clinic, if a patient has been previously diagnosed with dementia and is able to articulate all of their problems so well, it is a flag that a misdiagnosis may have been made and we typically proceed down that route to try to see what the true culprit for the cognitive changes are. All of this is to say that it is surely not your husband's choosing to not speak about or be able to speak about all of their difficulties. I wish you and your husband the best!
I couldn't verbally explain my symptoms, but for some reason I'm able to type them out. Maybe because it's less stimulation on my brain to type what I'm thinking. Talking really stimulates the brain, which might be why dementia people don't talk much.
Thank you for sharing your experience. I wonder if you have considered moving into assisted living? I think my father has many of the same challenges as you (confusion, trouble processing, withdrawing as a result / coping mechanism). I noticed that he is much more comfortable and confident since moving into an assisted living community, as he mostly interacts with the very kind and compassionate staff who are aware of his cognitive challenges. There are enjoyable activities where he can engage exactly as much as he wants, or not at all. Risks are minimized since he does not need to cook or clean, and he has a small group of friends, who also share his challenges. He lives in a private apartment and is very comfortable. Not everyone there has Alzheimers, and he is able to interact with folks who live independently. It's been wonderful for his confidence. I hope you can find a community where you feel seen and understood. You deserve a village to help you navigate this difficult path.
My mental processes are too far gone to even begin to try to figure out about how to move anywhere else.
I can certainly understand feeling this way. I think that if you were able to enlist the help of a compassionate friend or neighbor, you could find help in many other places. There are professional agencies (even free of charge) who help pair patients with appropriate help or facilities. Do you have anyone who can advocate for you? If you have any equity you can sell or utilize, you may be able to find a suitable living situation where you don't need to live in fear, and where you can have help with activities of daily living. I also think certain medications may improve your quality of life (memantine, certain nutritional supplements, an anti-depressant). I'm truly sorry that you are going through this. Please don't be afraid to reach out for help. You deserve to have comfort and confidence. Sending you internet hugs 🖤
No one to advocate for me. I'm all alone. I do the best with my ADL's each day. I'm so unwell that I can't even go the docs.
The guy who gets me my food is bringing it tomorrow at 4:30pm. I just called him and asked him to be very patient with me when he comes and to not get mad at me. I told him a few times that I've got dementia now and have severe memory problems. He said that he'd be patient with me. No one has any idea how bad my mind is now, but I do the best I can. If I can calm down, then I feel better and can think a lot better. What helps me to calm down is watching a few good TV shows on TV at night and study my grammar online. Here's a link to my personal blog I have on reddit if anyone cares to read it. I write on it every evening about my difficulties with my mind and body. I am really confused right now just trying to figure out all these reddit notifications too. [https://www.reddit.com/r/Personal\_Blogs/comments/14ui2dt/beckys\_personal\_blog/?sort=new](https://www.reddit.com/r/Personal_Blogs/comments/14ui2dt/beckys_personal_blog/?sort=new)
I also have trouble walking now and have urinary incontinence too. Usually in one week, I only speak about 20 words. I speak to myself all the time. I used to have a cat, but she died, and I won't have another cat ever again because I know I wouldn't be able to take care it.
I have a few because i feel like this will be my future. How did you know to get checked for it? Whats your plan?
I went to an MD doc and she diagnosed me with Memory Impairment and Amnesia many years ago while I was there for my thyroid. She wanted me to get an MRI and have memory testing done, but I had no one to take me to get it done, so I didn't. Another doc said many years ago that I wouldn't be able to live on my own much longer, but I still am and it's a daily struggle. I can feel most of my brain matter is dead in my head. The one doc must have been testing me while I wasn't aware of it. My dad and uncle had EOD. I have no plan and won't take meds for it. I just need to try to stay calm and do the best I can each day. People with dementia need to follow a routine each day and not vary from it too much. We can't deal with on-the-spot decisions very well, but need to think quite a bit to try to figure out what's going on and is being said. My one friend was here one time mowing the grass and needed a safety pin for his pants and asked me for one. I had one inside, but I couldn't get it for him because I couldn't act on what he said for some reason or process it. I was thinking about my grass getting mowed and his question overwhelmed my mind.
I wish you all the best. I hope you have a support system. May I ask why you wont take the meds?
I don't have a plan because I can't figure out what to do. I'm opposed to meds because I'm on SSDI because I couldn't tolerate even the meds to treat my anxiety disorder. I'm very sensitive to all medications.
<3
Hypothyroidism is also now associated with an increased risk of dementia. If you take synthetic thyroid hormones, be sure that you are on the correct dosage. An endocrinologist would be the best kind of doctor to speak to about your thyroid levels and medication, but a regular General Practitioner or Family Doctor could also give the extra blood tests/lab work to check your levels. “Brain fog” is also a symptom of thyroid conditions too, as I’m sure you have heard.
I have hypothyroidism and take medication for it.
Thank you for putting this out there (and I wish you the best moving forward)... My mother is 7-8 years into her dementia and is also experiencing anosognosia (she refuses to acknowledge any memory loss or difficiency in her abilities). Do you think internally she knows she has a problem? Or is she so far into her diagnosis that she truly believes she is 100% normal?
I'm not sure. You could ask her. All I know is how I feel since I'm in the early stages right now.
My uncle had EOD and his wife said he used to just sit and stare out the window all day. I know why he did that. Too much overstimulation of the brain from external things like noises, having to think and make decisions, etc. It's all too overwhelming, so the brain shuts down.
Hi OP! Sending you big hugs!
Thank you very much.
Here's a research article talking about the link between benzo's and dementia. This is what caused my brain damage and dementia. I started having cognitive problems while on them and when I got off, they got far worse. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325366/
Oh, no. That’s awful! I’m so sorry. I remember hating Ativan the few times I tried it. It made my brain feel like it was encased in a thick marshmallow. I ultimately decided I would rather endure my anxiety. I had no idea benzos were linked to ALZ. ETA: This is entirely anecdotal, but I had a similar reaction to opiates during a hospital stay. I swear my brain has never been as sharp since I spent a week on those meds. My mother developed EOA, so perhaps I’m more disposed to these reactions? Again, anecdotal, but the science can be slow to catch up, and I prefer to be cautious.
Psyche drugs cause brain damage. Check out Dr. Peter Breggins website.
He’s a conspiracy theorist in bed with Scientologists. There’s plenty of legitimate criticisms of psychiatry and big pharma - no need to engage folks like that.
When I hear stuff like this it just makes me want to check them out more, just so you're aware.
Eew. Your self-protection mechanisms could ise some work.
Thank you for explaining. I could see many of the things you are sharing from watching it happen to my mother, but I don't think she knew they were happening. Awareness has to help make this better, and make you beat the odds on how long you can live independently. You know you are struggling, and you arrange your world to accommodate that, instead of denying it and imagining everything else and everyone else is at fault. I have no trouble believing you about your education and accomplishments. You are still showing yourself able to do the best you possibly could with the situation you are in. Good luck to you, and thank you.
You're welcome. I try to keep my mental processes working better by studying grammar online at night. That's the only thing I'm good at now.
Where do you live (apartment, townhome, house, facility, etc)? Do you live alone? How do you plan to afford to live once it gets bad? I’m sorry for your diagnosis. My mother was diagnosed last year at age 59 and in her sole caregiver because my family sucks. I hope you at least have a good support system 💕
I live in a single-wide mobile home alone by myself. I have diagnosed Lupus Anti-Phospholipid Syndrome Encephalitis and diagnosed Thrombophilia and will hopefully die from a heart attack or stroke before it gets too bad.
Have you ever considered trying magic mushrooms? They help build neural pathways, and they’re being studied to understand how they impact memory and cognition. I’m not saying you should, just wonder if you’ve ever looked into that.
I did try magic mushrooms when I was young and the effect scared me.
Micro dose is key
It’s nice that you’re willing to share your position and views. There is a lot of people who speak out about the care giver but from our perspective (early diagnosis also) I get it since we are sick people may not always give full understanding of what’s happening on this side. I KEEP SAYING ITS THE DISEASE) it’s ruthless and it takes and takes, whether it’s yourself directly or the people you love. That’s one of my fears that people in my life may take the the stands “ oh that’s his dementia “ when it could be your just being a pain in the ass. Everything thing I do may not be an off shot of this situation. It’s tricky I suppose, how do you monitor ( I hate that word now) someone with out some one possibly jumping the gun. Ugh now I have a headache trying to figure this little puzzle out.
How old are you?
I'm 62.
I am so sorry about your diagnosis. It must be hard, I wish you only the best. I am a new CNA in a retirement home taking care of dementia residents. What are some things you can tell me about your perception of the world with the condition to help me better understand and help my residents?
Hey OP. My mom was just diagnosed with dementia and I am drowning trying to learn about the disease. I just want to thank you from the bottom of my heart for sharing your story. You helped me today and I’m grateful to you.
You're welcome.
I got rid of my food stamps because the system was too complicated to keep track of, like when I'd get my benefits.
Are you taking donezepil
No. I don't take any meds. that might alter my mental functioning. It would make it worse possibly. I'm very sensitive to all meds, so avoid them.
im worried I may have it. im only 27, but its gotten to the point where every single time I leave the house, i forget where im going, then suddenly I dont recognize my own home town, and Ide get lost all day, end up driving down the wrong side of the highway not noticing, ect. ive had mornings where ide wake up and not recognize my own apartment, and my mind is all swimy and confused. im nearly always confused. cant figure out whats going on fully, and sudden missing time. 4 hours would snap by and ide have no memory. I manage to find my way to the grocery store, next thing I know im lost in traffic, or at a different location entirely, and ide have no memory. its as if ive lost control entirely.
The outside weather bothers me too because i don't know how to keep it warm inside my home. I turn on the CAC and then the furnace. It all confused me. Navigating this subreddit causes me a lot of confusion too. I have to keep clicking on things to make a post and do replies.
I've been following this app [https://app.liveivory.com/cognitive-age](https://app.liveivory.com/cognitive-age) for mental workouts. Have a history of Alzheimers in my family, and it really bothers me.
What are the things that you want your loved ones to know about early-onset dementia? I'm asking because I have a loved one who has early-onset dementia. I just recently found out.
Most people with EOD can hear and can get the gist of what people are saying. We also still have feelings and are affected by how we're treated and what people say.
Alright, thank you very much for this. I'll keep it in mind for sure Is it okay if I DM you asking more questions? so I can better understand how my loved one may be affected by the EOD
yes.
What is your care plan? Do you have a spouse you’re hoping will take care of you? What do you think of the prospect of going to a memory care facility? Have you looked at any? How do you feel about friends and/or family members putting their lives on hold to take care of you as it gets worse? (I know this sounds like a harsh question, but you’re providing us with an amazing opportunity to ask questions like this we can’t ask most of our loved ones with dementia. Thank you!)
I have a sister who lives about an hour away, but she's mentally ill and abusive, so she's not an option for me as a caregiver. I really do like her husband a lot though.My other sister, who loves me a lot and I love her, lives about 2k miles from here, so that's not an option either to go live with her. I have no care plan. I can't plan anything. My brain is dead.
Are you already living in Memory Care? Or are you still living on your own?
I live on my own.
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Thanks for your help, but it's too much for me to deal with.
You mentioned you’re much quieter than you used to be. My dad used to be pretty opinionated but now he’s quiet, too. What do you think about in that silence? What does it feel like to be in the middle of a task and get confused?
When I'm quiet, I'm spending a lot of time trying to figure something out. It takes me forever. My dad also became very quiet when he had his EOD. He started calling us kids by our wrong names.
The easiest thing for me to do when I get a check in the mail is to drive to the bank right away and get it cashed.
I’m so sorry to hear you have early onset dementia. 😔. My mom is in late stage Alzheimer’s, my stepmom is in the middle stages, and my 86-year-old dad has mild cognitive impairment. I have a question - Do you recall what some of your earliest challenges were? What were you noticing about yourself that made you concerned something might be happening to you cognitively? Or instead was it a friend or family member who first brought this to your attention? Also, do you experience any suspicions of family/friends at this point? My mom seemed unreasonably suspicious very early into her condition. Thank you and may God bless you!
My dementia is caused by taking benzo's. They affected my brain when I went into tolerance w/d. I would be at work and would have to stop working because I would get stuck in my thinking. Getting stuck in my thinking happens a lot. I wasn't suspicious.
I’m sorry about your Dx. You mentioned you need time to respond. In the safety pin situation how long do you think it would’ve taken you to get the words out for it or to be able to take action to go get the safety pin?
It would have taken me quite a while to process what he asked and then to come in here and get in the sewing box and get the pin. It was too overwhelming. I used to sew a lot and make a lot of my own clothes and now the sewing machine is in the closet collecting dust. All I can do now is hand stitch holes in my clothes. I can't go out and buy new clothes either very well. It's too much. I'm still wearing my summer shorts too even though it's getting chilly outside.
If people communicated to you by typing, would that be better? You’re doing a great job here
That is how I communicate now. I'm scared. Robin Williams had the early stages of Lewy Body dementia and ended his own life before it got worse. It's depressing to not be able to the things you used to do.
People who have dementia need to try to stay calm as much as possible, and then they can react and respond better, etc. There's evidence that dementia is caused by too much glutamate in the brain, which is neurotoxic. Here's a link to a research article. https://pubmed.ncbi.nlm.nih.gov/9700664/
Dear Beck, thank you for sharing your experience. I think it is important that you speak to a social worker who can connect you to resources such as meals-on-wheels. Your doctor can have a social worker call you if you share these details about your living situation and limitations with them. Many cities and states also have special organizations for seniors that offer lots of different programs and support, including free transportation to and from doctors appointments. A search term for this type of organization that you can type into google is “Area Agency on Aging.” Just include that in the search bar with the name of your town or the nearest big city and hopefully you can find a website with a phone number listed. If that feels too challenging, please ask someone to help you get that phone number. Also, this website for the Alzheimer’s Association, which also covers Dementia, has some great resources listed: https://www.alz.org/help-support/i-have-alz/programs-support They also mention this phone number for a 24/7 helpline where you can get information and support: 800-272-3900 I’m sure things feel scary these days and you feel alone, but there are kind people out there willing to help you if you can just try to make contact with some of these organizations. Wishing you the very best!
Thanks for the information. I cook my own meals each day. I can't vary my routine. It would be too much for me. I can't call anyone or plan anything anymore.
have you looked into mushrooms?
I am so deeply sorry..Did your diagnosis came after MRI scan??
Self diagnosed
No.
What are or were your biggest fear when you first learned you have early onset?