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Posterior Cortical Atrophy(2)
Hello, my father was diagnosed with Posterior Cortical Atrophy at age 61yo. He is now 67yo and very impaired and dependent on my mom and myself for all ADLs. He has cortical blindness so cannot see anything on the left side along with the dementia. I am only 33yo so this has been a very unexpected shock losing my father so…
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Its sad as I wasted so much time with them
Good afternoon, I WOULD FIRST LIKE TO APPOLOGIZE IF FOR SOME RESON YOU ARE GETTING THIS A SECOND TIME. But I was going of multiple email list and you sure cannot trust a person with dementia to do it right. I wanted to ensure that I had reached out to all that I have spoken to in the past about DAA. Please share with all…
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New links for Teepa
I believe I sent links before but are now inactive because we were using them during the editing process. Here are the active links for our two sessions with Teepa. https://youtu.be/fLZHrsDERyY https://youtu.be/Eh4hN90cO7E
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This is great.
https://nadrc.acl.gov/details?search1=232 See the Guide_Billing_Codes_Dementia_Services_508_RO_Final_12-29-20.docx
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New Member - just saying hello
Was feeling particularly sad this morning and decided to join AlzConnected. My Mother passed last November and most times I feel like I am doing OK, but wondering if I might just be holding some of it down to stay strong and functional for my wife and kids. Can’t stop crying this morning after the guardianship termination…
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Introduction(2)
I'm 63 and am in a clinical research study about memory loss. I've had several MRIs and a PET scan that shows plaques and tangles in my brain. People (strangers) tilt their heads on their head on their side when I talk. When I've asked why, it's always the same, "You've already said that. Several times." I'm still in the…
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Alzheimer's, Aromatherapy, and the Sense of Smell
I posted this on the Caregiver's forum, too. I cannot remember another time that I have been so impressed and yet disappointed in a book at the same time. First, the title threw me off. About 90 percent of the book is about Alzheimer's disease separate from aromatherapy (risk factors, measures to reduce risks, caregiving…
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You may be interested in this person.
Lori La Bey has many great resources for all folks related to dementia. Please feel free to share. The Video is live now https://youtu.be/RMwUpWzvbsg Here is the link to the event on Dementia Map…
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The Brain Health Academy
Free, evidence-based courses to equip healthcare and wellness providers with the knowledge and resources to help people reduce the risk of dementia and Alzheimer’s. https://www.usagainstalzheimers.org/brain-health-academy
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Good resources for younger kids who have to help with caregiving in a home
https://aacy.org/
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CSF in Dementia
I was wondering if any of you had a lumbar puncture to try to confirm a diagnosis of dementia. Are there specific markers for dementia in general aside from tau protein I think. Has it helped in a diagnosis?
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Vacation
II recently when on a cruise and I had multiple meltdowns because of noise at dinner but I will not change a thing. I had earplugs in and it did not help. Next time I will also have noise cancelling headphones. Sadly when I came back I got COVID. I was so lucky I had all three shots as I was in bad shape forv3 days with…
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A Report from the GLOBAL COUNCIL ON BRAIN HEALTH on BEHAVIOR CHANGE
I may have shared this but don’t remember. If I did please let me know and I will delete. Thanks https://www.aarp.org/content/dam/aarp/health/brain_health/2022-03/gcbh-behavior-change-report-english.doi.10.26419-2Fpia.00106.001.pdf
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Does diagnosis have to take more than a year!?!
I'm 51, I saw my primary care doctor last year in June because I had noticed some strange things. My vocabulary has diminished, my reading comprehension has decreased, I have to park in the same place when shopping or I can't find my car, I sometimes forget where I'm going or when running errands I drive to the wrong…
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Looking to move my recently widowed Mom who has EO AD to MC, seeking advice.
My Dad passed away suddenly from a skin infection a little over two months ago leaving behind my Mom (56 y/o) who was diagnosed with EO AD in 2019. I am the oldest of four siblings and have been the one driving the care train for my Mom since the loss of our Dad. My Grandmother (76 y/o) moved my Mom (her daughter) into her…
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Respite Care for My LO - A Good Experience
Hello - I had to retire early to care for my wife full time as she has early onset FTD. Both in our 50s, I've not being able to get away for 2 years now, getting our estate in order, securing Medicare, finalizing her diagnosis and enrolling her in our local PACE program, doing the legwork with our assigned PACE caseworker,…
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Lost
My mom has been showing signs of Alzheimer’s or Dementia for a couple years now, she noticed it and mentioned it to our family that she can’t remember simple tasks anymore. This was right before Covid hit, she talked to her doc and they got her referred over to a neurologist to do some testing.. the testing was rough for…
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Posterior Cortical Atrophy(1)
We are from Baltimore MD. Does anyone in this group suffer from PCA? I've asked a few months ago and no one has responded. It is a very rare form of Alzheimer's and usually affects those under 65. I have found multiple support groups, but all are based out of the UK. I also found (through one support group) someone who…
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Youtube goes live on March 22nd at 5pm ET
https://youtu.be/_jsR5Dv2LRA
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Hallucinations, paranoia, and feeling trapped
My mother is 60 and has early onset Alzheimer’s. She has recently started having hallucinations where she thinks my father is going to kill her. I live next door and my brother lives with them to help. We both agree that is not what is happening. She has tried wandering off/ running away and now often says she feels…
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Please do this by end of day today
It is a 3-minute video and includes extremely moving words from the patient advocates – it is a great compilation that makes the case for CMS to provide coverage. We encourage everyone to share with their friends, families, and professional networks on Facebook, Twitter, and other social media. This can help get the word…
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Stealing
Hi, My mother has increased in her agitation as it relates to objects. She has always been a compulsive shopper so the disease has enhanced that feeling. Lately, when we walk around the block, she likes to pluck a flower from a bush. At first I thought it was harmless, but now, she feels like she *HAS TO* get something…
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like to meet a dementia person in their ‘40’s or ‘50’s living in NYC.
Do you know anyone? Please reach out to me privetly. Thanks
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Please do your part if local
Hope to see you there
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Tony Bennett and Lady Gaga
Will be on TV this coming Sunday CBS.
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Myoclonus - an early sign?
Hello everyone, I am new here too and as I can see, there is so much info here, its hard to digest. I did a couple searches for Myoclonus and saw some discussions around it. However at the risk of being redundant, I wanted to ask if anyone knows whether Myoclonus is an early and clear sign of AD? My 79 y/o mother-in-law is…
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Where to start?(1)
Hello everyone, I am new to this association and new to having a loved one with this disease. Long story short, we (the family) weren’t aware of my father’s condition until very recent following his third stroke in October 2021. It appears dementia sped up a bit more since then. I am reaching out for help where to start. I…
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Posterior Cortical Atrophy
My husband was diagnosed in 2017 at age 60 with Alzheimer's. He since has been diagnosed with posterior Cortical Atrophy. This is a form of Alzheimer's that isn't common at all. When I mention this to anyone no one seems to have heard of it. This makes it very hard for me to get support. His vision is worsening along with…
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I thought this was great survey and it shows what people do not know.
https://www.aarp.org/content/dam/aarp/research/surveys_statistics/health/2021/dementia-diagnosis-perceptions.doi.10.26419-2Fres.00471.001.pdf
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OT re: Betty White
Betty White supported the Los Angeles Zoo. The zoo has created a self-guided Betty's L.A. Zoo Tour, honoring her contributions to the facility. The tour includes signs at 16 stops where guests can learn about her connection to a particular animal or location. The walking tour will be up through January 31st. The tour can…