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Please Share With Me The Time Frame You Have Personally Experienced With Alzheimer’s

A myALZteam Member asked a question 💭
Long Island, NY

I am fully aware that each patient is unique with this disease. I still would appreciate hearing your own experiences. From the time that symptoms were first observed how and when was the diagnosis made? Then after that how many years did it take for the disease to progress to its more advanced or final stage?
Thank you.

May 1, 2019
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Answer Summary

Members shared deeply personal timelines of Alzheimer's progression in their loved ones, with experiences ranging from slow declines over 8 to... Read more

Members shared deeply personal timelines of Alzheimer's progression in their loved ones, with experiences ranging from slow declines over 8 to 12 years to more rapid progression within 2 to 5 years, illustrating how uniquely the disease affects each person. Several members described the journey from early symptoms like forgetfulness and personality changes to mid and late stages involving loss of independence with bathing, dressing, speaking, and recognizing loved ones, with spinal taps and neurological exams helping confirm diagnoses when brain scans appeared normal. A recurring theme was the importance of honoring a patient's dignity and wishes around further testing, prioritizing socialization and comfort over constant medical evaluations, and finding strength in community support while navigating the emotional weight of watching a loved one slowly fade.

A myALZteam Member

Andy is 8 years into the disease and displayed systems 4-5 years prior to his diagnosis.This kind gentle man started forgetting important things, displayed angry outbursts and had out of character personality changes. Because Alzheimer’s runs in his family I knew what was happening. Presently he walks with great difficulty, shuffling his feet and falling often. His voice has become horse and he speaks very softly, almost inaudible. He can no longer bath, brush his teeth, shave or dress himself. He is unable to cut his food, but has no difficulty feeding himself. He is not incontinent, but has had accidents from time to time. He hallucinates often and has no idea of where he is, who he is or who I am. Can you share what’s going on with you?

May 1, 2019
A myALZteam Member

We are about 9 years into it now.
My husband no longer speaks in sentences, needs assistance with dressing himself and showering.
He still feeds himself (with instruction and after I cut the food). He isn’t incontinent, but is confused by public bathrooms and usually requires assistance. He displayed mild symptoms for about 3 years before we decided to get an official diagnoses. His father had Alzheimer’s, so we knew what we were probably dealing with before the diagnosis. I don’t know how long he’ll be mid stage because as you say, each case is unique.
I assume from your user name that your husband is displaying symptoms. I urge you to go for a diagnosis, if you haven’t already. Sometimes memory problems can be due to medications or vitamin deficiencies. I hope this helps you with whatever your situation might be.

May 1, 2019 (edited)
A myALZteam Member

Sounds like you have an excellent neurologist so not sure further testing would be of any use....spinal tap confirmed Alz…..perhaps your kids don't understand that tap was ultimate diagnostic test.

May 2, 2019 (edited)
A myALZteam Member

My husband has the light box so far I see no difference

September 22, 2021
A myALZteam Member

My mum was showing signs 12 years ago! What she has is slow moving! For the last two years it hastened and i now live most of my time with her. She is not good assessing situations so needs 24 hr care. The first symptoms i noticed were inability to decide what milk she drank, then the driving was scary and had to go, then the paranoia that made no sense. People were stealing from her, e.g dog food and the electricity! I dont want to see her in care...too dustressing for me...so here i will stay along as i can!

May 2, 2019

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