Tomorrow is brain cage day, also known as brain MRI day. I’m not even claustrophobic and it makes me antsy. The good thing is that my visit at Barnes turned out really well. No obvious issue like dementia. The neurologist seems to think that perhaps my sleep is my problem. We’re doing an MRI to compare to my baseline from 2015 and see if there are any differences and if not, I’ll be seeing a sleep neurologist. I already have a CPAP so it’s pretty unlikely that is the problem. I’m a real tosser and turner plus wake up a lot so I can see that being an issue. I’ll tell you, just getting through that appointment was a major stress reducer for me. I was so nervous. I mean, it’s my brain! No one wants a crapped out brain. I’m hoping we can get me back to normal so I’m not forgetting everything all the time. I’ve got quite a while before that becomes my daily life.
I have begun doing squats at my desk and am out in the garden. My heart rate has dropped significantly in the past few weeks. Exercise plus lower stress levels all the way around are certainly helpful. Here’s hoping for more good news tomorrow.
Having memory issues is a scary thing. I forget appointments and events; I forget to go to the grocery store, pay bills, etc. I bought my first daily planner ever, a Day Designer. I used to use weekly planners because it was the most efficient for me. Now I have to write down everything so daily is the way to go. I like the simplicity of it. It has the sections I need but isn’t fussy so I’m not distracted,
My birthday was Saturday. My husband bought me what I have been dying to have, an Amazon Echo, and I love it. I already have it set up to turn off some lights. I set timers for cooking and reminders to turn off the stove. I add items to the grocery list while I’m in the kitchen looking in the pantry. I tell it where my keys are when I get home and it remembers for me. God, what a handy fucking tool for me,
I also have an Apple watch. My Dr. suggested it for reminders about medication and appointments. It has helped tremendously. It just gives me reminders until I complete the task. It also has a breathing app so I can remember to slow down and focus.
I use Grammarly and Lingofy for spelling and grammar while I write to maintain my previous level of ability. They don’t catch every mistake but proofreading helps too, as I recognize the error even if it takes a bit to figure it out. I also use the Lingofy AP guidebook for professional questions while I work, rather than second guess it.
My vocabulary and IQ are still high, my memory processing speed is the biggest hit right now which means it takes me longer to do the same tasks. Sometimes following a sewing pattern pisses me off-putting sleeves on incorrectly or the like. Of course, I did those things before and laughed them off. I’m so much harder on myself now. Long, productive days are exhausting. I come home wiped out just from concentrating so hard.
There’s hope, I haven’t been diagnosed yet, so perhaps I have a reversible or manageable problem. Then again, maybe I have dementia. At 48 fucking years old. No matter what, I want an answer to my problems, whether the outcome is desirable or not. I’ll tell you this, I never had a honeymoon or even a vacation with my husband and if the clock is ticking on my brain, that will be priority one. I want to make as many great memories for me and my family while I can.
The book, Still Alice, had been on my reading list for a while. I still haven’t gotten to it because I have 32 books loaded on my Kindle to read right now. This weekend I saw that the movie was on Starz though, so I decided to watch it. It terrified me. As a person who is currently struggling with memory issues and “significant memory slowdown” I am afraid of what this will mean for my family and me. Mostly my family. If my memory problems progress to a significant loss of lifestyle the ones who suffer will be my immediate family, not me. Hell, I won’t always realize what is going on.
The hardest part is right now, while I do know what is happening. It sucks to feel stupid and unable to process things quickly. Some days are great, and I can tear through work. Other days it is like I am underwater and tied down or I ask the same thing over and over. I’ve been referred to the Memory Diagnostic Center at Barnes in St. Louis so I am confident that they can help me. I was told I will be one of the youngest patients. Sigh. I don’t feel that is a compliment. Maybe it is related to one of my autoimmune diseases and can be resolved or slowed. Fingers crossed.
I’ve watched my vocabulary shrink, I’ve missed many weddings, appointments, due dates and more because I can’t remember things. Even with reminders I sometimes forget. I left my Apple watch at home this morning which is a huge assistance to me in daily life. It reminds me to take my meds, to pick up my grandchild from daycare, what’s on my shopping list, etc. I’m lucky because I just have bad days but I am still 100% independent and not facing physical harm because of the ongoing problems. I’m not going to wander out into the street in the middle of the night or leave the stove on. The question lurking in the back of my head is, “will it come to that one day?”