Recently, I shared that I’ve been diagnosed with Major Neurocognitive Disorder, the new umbrella term for dementia. Getting a dementia diagnosis is unnerving. My friends and family were met with shock and denial. I get it. I had the same response. What I need for people to understand is that this didn’t come out of the blue. I was diagnosed with Mild Cognitive Impairment five years ago after undergoing electroconvulsive therapy. MCI is a common precursor to MND. About a year ago, I noticed it was harder to remember and learn new things. I forgot the names of friends I had known for years. I couldn’t memorize a favorite scripture verse. I got disoriented easily. And the most upsetting part for me is that even after Brittany transitioned 13 years ago, I started to use male pronouns and even her “dead name”. Because of this, I went back to the doctor. I saw a neurologist who referred me to a neuropsychologist. I underwent a 4-hour assessment testing my memory, learning ability and intelligence. She compared the results with the earlier assessment and saw “significant” deterioration. This was especially true with my intelligence. Five years ago, my memory showed decline, but my intelligence was unaffected. This time the deterioration was across the board.
My point is that even if the doctor were to come back and say the diagnosis is wrong, it wouldn’t change the struggles I’m having. There is something going on and both the neurologist and my primary care doctor have said this is not “normal aging”. These are not “senior moments”. If you don’t see it, it’s because I’m very good at compensating. I’ve had five years to learn to write detailed notes for myself. When I get lost in conversations I fake my way through it. If I don’t seem appropriately dismayed myself, it’s because I have my own denial I’m working through. And honestly, it’s a relief to have a diagnosis. I’m looking forward to seeing the neurologist (one that is top of her field in memory loss) to get a game plan in place.
If you love me, if you want to help me, move past your own doubts and denials and help me make plans for when I lose more of myself. Make the videos. If I wait until I’m even worse off, I won’t be able to create the slideshow. I’m terrified of forgetting those that love me, and I really want to have something tangible to remember you all. Help me stay positive about a treatment plan. There is no cure but there are treatments and who knows? Maybe when I move from early-stage dementia to moderate dementia, there will be a cure. Thank you all for your concern, support and love. I need you now.
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