Hoping to Start an Ongoing Conversation Space for Those Living with Dementia

Gabbycam · April 3

https://alzconnected.org/discussion/comment/269135#Comment_269135

Hi Diane,

I'm so sorry, I understand what it's like not to be able to take the infusions. I opted not to because I have a higher risk for ARIA and brain bleeds because of I have 2 APOE4 genes. You are in the right place. I have found this platform is a little clunky - but we are making do. I would love to get to know you more. I'd love to hear more about you.

Kerry

chemist867 · April 16

I had the cognitive assessment, blood tests, and metabolic PET scan a year and a half ago. So far, everything indicates early-onset Alzheimer's since I'm in my early 60s. My insurance doesn't cover the amyloid PET, so I need to wait for Medicare. My working memory (short-term memory) is gone. I'm unable to remember anything I read, hear, or see. My math skills have become very poor, but I'm still able to reason. Remembering names is an issue, as is finding the right word in conversations.

This is all very distressing, and the stress only gets worse with time because I don't know what's around the corner. I'm still the family provider, working part-time, but I don't know how long that will last. I'm concerned about what will happen when I'm no longer able to work since I am not a man of means.

I dread ending up in a public nursing home. I visited one many years ago, and it looked worse than Hell. I wish I could end on a bright note, but I can't think of one.

Gabbycam · April 16

I’m so sorry about what you’re going through. I understand that kind of uncertainty, the waiting, the fear about what’s changing, and the pressure of still trying to work while your mind feels different. It’s real, I remember feeling so much of that fear and anxiety.

Being stuck without the amyloid PET is hard, but don’t stop fighting for answers. There are new FDA‑cleared blood tests that can be used and your PCP is the front door for these tests. It took me years to get my diagnosis, and it was scary, they didn't have the blood test when I was going through it. I advocated for this test to become available for people just like you. Call the Alzheimer's Association's helpline for more information. Their helpline number is 800‑272‑3900. They can talk with you anytime, (and it is ALWAYS a live person). They help you sort through next steps, and connect you with resources you may not know about.

I'd love for you to join our group. Look for the This is Us Group and hit join. I'm Kerry - and my friend you are not alone.

Hoping to Start an Ongoing Conversation Space for Those Living with Dementia

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