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Improving Services and Program for People with Dementia
Michael Ellenbogen sent me this excellent, concise article on how to improve services and programs for people with dementia (including his own recommendations for hospital care). https://progressally6yogf8hc32ioroi.s3.us-east-1.amazonaws.com/list/Journal/99/j99-delorenzo.pdf
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Recent diagnosis of LBD
I am new to this disease and have fears and questions of what my reality will look like and a sense of urgency to get all my end of life plans and make sure I have all things including legal affairs in order. And I have fears as well. I have found many things that describe situations from the caregiver side. I appreciate…
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Feedback on Kisunla
Hi. I am 75 F newly diagnosed ES Alz and leaning to try Kisunla. I have Medicare and BSBC but having problems getting a breakout of what is covered and what I must pay $ monthly. Id be so appreciative regarding on what you pay for Kisunla out of pocket. And any feedback on your or your LO has on Kisunla.
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Is there any other way to relieve agitation besides medication?
My dear grandmother was diagnosed with Alzheimer's last year, and just in the previous few months, she has gotten worse. She has been yelling, berating, and crying lately, more like a manic patient. Sometimes she yells at my grandpa, mom, and aunts over a small thing. We are all heartbroken. And she refuses to take her…
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Do any of you folks have early dementia yourselves and live alone?
Everywhere I look, I find support, even on Blogs for caregivers, but I have yet to find something to assist the person who has dementia.
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Looking for a regular online support meeting to attend
Hi, I am the life partner of someone with between mild to moderate dementia. He and I would like to attend something together so we can hear together what is ahead and what works to help with different aspects of the disease and its progression. Any links appreciated. Thank you
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Kinsula treatment
Is anyone in this group being treated with Kinsula? If yes what has been your experience. I would like to know more about it before making a decision to start treatment.
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How to cope and help?
My family believes my father is struggling with early onset of dementia. He is very stubborn and does not like anyone telling him nor suggesting on what he can or cannot do. Always has called the shots and at 84 he is still driving his tractor and trying to farm. My mother lives with him and all of his kids me included are…
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Diagnosis
Maybe someone has had this diagnosis information and can weigh in. I was diagnosed with Alzheimer's in early 2022. My MRI showed moderate shrinkage on the left side of my brain. I am wondering why shrinkage would only be on one side.
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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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Hello Everyone - just diagnosed with AD
I am a retired engineer, 71 years old, born and raised in Ponce, Puerto Rico, but I have been living on the mainland since 1984. I am a widower living alone and was recently diagnosed with very early stage AD based on the results of my PET Scan, even though my PTAU 217 levels showed normal. I do not have the PTOE 4 (is…
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Another Newbie
Hi, I'm 66 and new to the group. I was diagnosed with AD in Jan. 2025 (MCI stage). Taking Lequmbi infusions every 2 weeks. AD is really a shock to the system. Overwhelmed wth stress & planning for the future (when should I start memory care?).Living with a partner in Florida whose done the caretaker thing twce before and…
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New Dementia diagnosis
I was diagnosed with Dementia several months ago (I can’t remember exactly) and am having trouble dealing with the memory problems. I am on Memantine and Galantamine with good response…..well at least in the beginning. I feel like I am getting worse. I plan on taking to my doctor. I am wondering if I need to see a…
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New, Scared and Confused...
I'm obviously a newbie to this site, as well as the amazing and mysterious world of Alzheimer’s. I began seeing a neurologist last summer because of an inability to think as clearly as I once did. Memory didn't seem like much of a problem since as far as I can remember, I always had a bad memory. Other issues that I…
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Dementia discussion
Hi All, I am new to this site and wondered if my experience resembles anyone else's. So far, I have had the following tests, which all came out ok. CT Angiogram, EEG Brainwave, Echo Cardiogram, PET Scan, Ankle Brachial, and Heart Monitor. The initial discussion with the doctor is Dementia. Also, what are the common…
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Genetic Testing
Is an order for genetic testing routine for those diagnosed with AZ?
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What were your first symptoms?
I am curious what the early symptoms those here experienced? Long-term or short-term memory loss? decrease in ability to focus? Any other mental symptoms? Any physical symptoms? Were the symptoms constant? or episodic/occasional? I have had episodes of extreme foggy-brainess over the past 5 years along with a loss of…
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Revealing diagnosis
How and when does one begin the process of revealing the diagnosis?
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Recent Alz dx -not coping well
Hello, Last year both of my parents passed from Alzheimer's. One month after my father's passing I was dx with Alz. My neuro believes I've had it for aprox 2 yrs. Brain shrinkage of both sides of my brain and amaloyd plaques in the frontal areas. All confirmed with MRI and PET scan. Issues are not too troubling nor are…
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Warning: Avoid Brain Injury in mAb Clinical Trials.
In 2023, I was in a clinical trial similar to those mentioned in the NY Times article posted here by Crushed. (Alzheimer's drug horror story from the NYT, posted 10/23/2023). I was tested and accepted into the study in January. After taking 5 doses, one injection each week for five weeks, I started getting side effects. I…
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Hello I'm back
I've been in the hospital almost the entire month of February withe the flu I'm almost back to normal. My main problem is I have hard time standing up without help. I hope pt will help me get better.
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Dirty habits
HI. My mom is a stage 6 dementia patient and we have a caregiver for her during day time while I am away for work. From evening 5 pm, I take care of her and I have set a daily pattern for her. 1. Take her down for a stroll in the society everyday. Make her sit with her old friends n I socialize with then, such that she…
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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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helping my brother with short term memory loss as his guardian
I am at a loss. My brother lost his wife and continued to drink heavily. Became real sick and ended up with dementia/short term memory loss. He was able to gain a little back but I don't know what to do. I took him away from his home because there was no one there to care for him when he left the hospital. My husband I…
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67 and diagnosed with ALZ 2 years ago
Would like to find others to converse with in the Del Mar area. I retired 2 years ago due to ALZ. Finding it lonely since husband works and I no longer drive. Either in person or online. Thank you.
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New to Alz
J & L are new to Alz. We have one support group in 52241 and we are the only active members. Our diagnosis is "Early-Stage" and we are in the upper 80s but otherwise in good health. We have freely shared our diagnosis. We are reading all we can about proper nutrition for dementia. We are active in National Senior Games…
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New Here…
Hello all, I joined this page on behalf of my husband he was diagnosed with Alzheimer’s at the age of 54. I am currently his caregiver and plan on being by his side through this entire process. We are located in California and would love to talk and seek advice from other families with such early onset. I have spent…
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Kisunla
I am interested in hearing from someone who has experience with Kisunla infusions. Thanks! Didi
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Not eating food
Hello I am from India My grandmother has dementia she forget daily tasks but remember family members. Now she is not able to eat food Md difficulty in walking while standing she rejects to walk.She prefers to sleep only as much as. Kindly suggest me how can i make here to. Regain eating and walking activities
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Hi I am new here and have questions
My mom has had dementia now since 2014. She is in a Dementia group home. I am struggling with the dementia and not sure how to handle it. She just lays in her bed all the time and never walks. She is always miles away when I talk with her. When she has physical issues like a bladder infection she does not tell the staff…