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Anger with discussion of memory loss
Mom has young onset dementia, and is very adamant that there is nothing wrong with her. So having a discussion with the MD about her anxiety from the dementia is going to be very difficult in a couple of weeks. How do you all handle that?? If I even mention how her memory is worsening to the doctor, she is instantly mad at…
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Transportation Solutions
My mom is 56 and has early onset, I recently told her she wouldn’t be allowed to drive. It was probably the most traumatizing conversation I ever had. She flipped out, had multiple tantrums and breakdowns, said she would rather be dead, etc etc. . However now we are in a position where we do not have a means for her to get…
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Online Support Group for male caregivers of early onset wife
This is a monthly online support group specifically for male spouses caring for their early onset dementia wife. The support group is operated through Lorenzo’s House and is called The Light Lounge. The Light Lounge is a virtual space where male caregiver spouses of a loved one diagnosed with younger-onset Alzheimer’s or…
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How Long till Death?
I know this sounds like a morbid question. My sister is 57 and has reached the 7th level of the disease. She has Bensons syndrome, which is extremely rare and it has taken her eyesight. She lost 35 Pounds over the past year, and the Dr's are saying that it is linear and we should expect her to lose the same or more in the…
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Not sure where I fit
Hi, I posted here months ago but I deleted it as I wasn't sure it was appropriate. I'm in my 50's and I feel there are probably changes in my brain but I don't know how to proceed and wondered if anyone could guide me. Here's what I've got going on: 1) family history of AD (older onset) 2) subjective cognitive decline over…
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2022 National Alzheimer's Summit Alzheimer’s Prevention, Detection, and Treatment The Power of Us
Please donate to this great organization. They are the ones bring much of the change you see today. https://www.usa2summit.org/?sourceid=1073707&emci=9da55103-2a47-ed11-b495-002248258d38&emdi=cb12a20e-e148-ed11-b495-002248258d38&ceid=5966765
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Where To Get Alzheimer’s Blood Tests: A 2022 Update
https://www.beingpatient.com/where-can-i-get-an-alzheimers-blood-test/
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Maybe I have finally figured this disease out
I have been trying to figure out Alzheimer's disease for nearly twenty years. It comes down to this very simple observation: "The inflammatory mediator peroxynitrite, when generated in excess, may damage cells by oxidizing and nitrating cellular components. Defense against this reactive species may be at the level of…
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Younger onset
Hello amazing people, my dear friend has been recently diagnosed with Alzheimer at 51.
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I believe I passed the road test.
Today I completed the last item on my bucket list. What an amazing day. Pictures https://164boatyardroad.imgbb.com/ Video https://www.youtube.com/watch?v=BQAJx7g-sk8 Now I need to find something new to do.
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Just diagnosed at 47 yrs old
Desperately seeking clarity in this ocean of information to know what I need to do to safeguard my family. It's been a couple of months and I'm waiting for my next appointment to another neurologist at WF. I have been able to tell most of my family as the reality is sinking in. I have been a part of this site for several…
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Echolalia
I just recently learned the term and it is what my husband does. Not constantly but often enough that it can get annoying. He will randomly repeat what is on the radio, what other people in the room say, etc. He seems unaware that he does it. It is done almost immediately after he hears something and unmitigated. We don't…
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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…