Alzheimer's Disease

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Oh I Forgot, Just Clumsy?

I’ve spent 25 years crawling through my own brain in therapy, discovering myself, and my BPD. Then when I’m doing pretty well and I think the coast is clear, then
BAM, I get hit head on by life’s semi truck when my sister, and soulmate, died four years ago. Damn,
why did I not think that last night together to crawl into bed with her and swallow her Hospice morphine so I could go with her? There is no life without her. God, I miss you!!!
So for the past four years, I’ve been letting my panic disorder and depression fight it out with each other
while I just lie in bed wishing I were nothing.
During this past year, after spinal fusion surgery, I have been falling quite a lot. Sometimes up to seven times a day. Broke my nose, falling, cracked my elbow bone, falling, and pretty much black and blue head to toe all the time. Thinking it was something spinal or something neurological, we did 1 million MRIs and 2, million vials of blood, so the neurologist could try and figure out why I keep falling and having memory loss. Losing the words here and there. So, finally after all the testing he did, it was time to go in and see him this week and get the results of what he thought was going on.
Was it from my spine surgery Last year or possibly something at the base of my brain at the top of my spine??? He comes in the office and says ALZHEIMER’S… as easily as if he was asking me to pass him the salt.
OMG, that wasn’t even what we were looking for, not even on the radar.
Oh dear God, what am I going to do with this information??? My aunt had Alzheimer’s. I visited her every day until one day I just disappeared from her. The day she forgot who I was, I just sat and cried and cried.
I don’t want to be her, not even knowing who people are or having any say so to your own life because
you’re not in your own brain. What the hell do I do with this information at only 64 years old.
Damn, I should’ve remembered Jean’s morphine that final night!!!
#BorderlinePersonalityDisorder #AlzheimersDisease #Grief #BPD #MentalHealth #Depression #Memory #Loss

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Did You Meet With Cognitive Issues (e.g. Memory Loss or Mental Fatigue)?

#AlzheimersDisease while many of us are familiar with the physical changes that come with aging, cognitive changes often go unnoticed until they begin to interfere with daily activities. Cognitive challenges, such as memory loss, trouble focusing, and mental fatigue, can significantly impact our ability to work, interact with others, and enjoy life. Here're some effective solutions you can check: Navigating Cognitive Challenges: Common Issue and Effective Solutions

Navigating Cognitive Challenges: Common Issue and Effective Solutions

Cognitive health is essential for maintaining an active and fulfilling life, especially as we grow older. While many of us are familiar with the physical changes that come with aging, cognitive changes often go unnoticed until they begin to interfere with daily activities. Cognitive challenges, such as memory loss, tro
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A bittersweet journey.

Sorry, this is longer than I thought it would be...
My husband died 11 months ago. He had Alzheimer's. He was quite a bit older than me. When he died at 74 we had been married almost 30 years, and for half of that time the spectre of Alzheimers was growing and progressing until its inevitable end.
His mother also died from Alzheimers and it was his greatest fear. I cared for him alone until a couple of years before his death, when it was no longer safe for him to stay at home. I thought once that watching my mother succumb to cancer was the hardest thing I'd ever have to do - I was wrong.
Sometimes there were moments of real closeness and it made my day when his face would break into a wide smile. The last words he said were to me, before he lapsed into unconsciousness were, 'I'm quite happy' and he smiled. It was his last gift to me and I will always treasure that memory. Or I hope I will, if my memory remains functional.
His loss sits like a lump of granite in the centre of my chest, but there is at least as much grief that the last years of his life were so awful.
Amongst the funny moments and the tender moments there were some truly awful times; like when he believed he was possessed by the devil, and was trying to throw a brick through someone's window to get arrested, so that he would get locked up where he couldn't hurt anyone. Or when he barricaded himself in our home because a drugs gang were coming to sieze the property. Or when he broke down in tears because he couldn't remember how to peel a banana.
I don't have any kids, and being his carer was incredibly lonely. Other people just don't get it, and you've now become the only adult in the relationship. People stop inviting you places when you can never go, and eventually they stop asking.
They think it just means your memory gets worse, but you lose executive function, and the effects on the body can be devastating. They say, 'but you know its not really him now, don't you?' Like that's supposed to be comforting. I never bought into that. If it wasn't him then who or what was he? He was different, but I refused to deny his humanity, or pretend that he had somehow already left the building. If in the end all I could do was walk with him and bear witness to his life as long as he remained, then I would do that. As our time together was coming closer to its end, every moment was precious.
He was diagnosed early, and we talked about it and his wishes while he was still able, and I would encourage everyone to talk to their nearest and dearest.
Now it's just me. No family. Even in his diminished state, I was his number one person. I'm no-one's number one now, and I'm terrified of a future where I'm as vulnerable as he was. I was his advocate, his carer, and his wife, and I'm afraid now of growing old alone with no-one to do the same for me.
I scattered his ashes on the shores of Loch Lomond on a blustery day that would have been our 30th wedding anniversary. I thought my heart would break - it felt very final - but as the wind whipped his ashes away, I remember thinking, 'you're free now.'
#AlzheimersDisease #Carer #Lonliness #Grief #bereavement

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Interviews with Scientists!

Hi Everyone! I'm new here. The patient committee I manage suggested I post this interview series here for interest and educational purposes. I'd love your feedback! Our goal is to reach a wider public/patient audience with this project! Happy watching and I hope you learn something learn! www.youtube.com/playlist #scicomm #ClinicalTrials #Research #StemCells #CardiovascularDisease #AlzheimersDisease #ParkinsonsDisease #Diabetes

Stem Cells from the Sofa

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I just ended my monthly support group called Dementia Dialogues. I had no idea that there are Memory Cafes for places to get out and be in a non-judgmental, safe environment with others going through the same difficulties. I looked it up and they are everywhere!

#Dementia #AlzheimersDisease #LewyBodyDementia

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My apologies

#I'm sorry that I have been falling behind in my postings. July has been a tough month for me. Most days I have been sleeping and not really leaving my bed.

I have a series of doctor visits coming up that will determine if I have Lewy Body Dementia. This is a spectrum involving the mix of Parkinson's and Alzheimer's. At the same time as this, I am also in the process of tests to see if I have Intracranial Hypertension. That is where too much spinal fluid is building up for whatever reason and filling areas in my skull damaging my brain.

I am not in denial. In fact, I feel that these two conditions have been the closest to the truth in my three year journey to finding the truth about my health.

I'm scared. I see my father, who has Alzheimer's, decline slowly and he is so angry. I don't want to be angry and mean.

I also have accepted that I need mobility aids. I cleaned up my grandfather's walker and crutches. I saw a wooden walking stick; very fancy. I felt like Frodo Baggins. I can get into using that.

Another thing I am scared about is forgetting people I love. I don't think that will happen anytime soon, but it could be my future and I don't want that.

Thanks for reading my ramble.

#Dementia #Depression #ParkinsonsDisease #AlzheimersDisease #MentalHealth #Grief

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