Now what?

What my brain probably looks like inside! I took this picture while in Berlin, Germany.

Before you read my blog, my husband Bob has started writing notes from the near side. Find his writing in the italic below.

I have a peeve. When Lisa goes into our kitchen and notices that there are “things” lying about that shouldn’t be there, she starts talking to herself (really me), saying “how did the salt get all over the oven?,” “What are those Subway wrappers doing on the countertop? Let me walk over and put them in the trash.” This happens most frequently after she has finished cleaning it. This is early onset passive aggressive behavior. I wish she would stop. I’m not holding my breath.

My journey to where I stand today, started with Shingles, Type 1 Diabetes, Hemiplegic Headaches, a TIA and Aphasia and short-term memory problems.  

I spent time (several appointments) with 5 different highly recommended neurologists, 2 neurophysiologists and a speech therapist to get my verdict/diagnosis of Early Onset Alzheimer’s, Mild Cognitive Impairment, and Aphasia.  It also took about 2-3 years to solidify the final diagnosis.  It seemed to be a struggle to get a concrete diagnosis from each doctor.  I’m not quite sure why; however, when listening to introductions on my group therapy conference calls, other patients described the same exact diagnosis processes I experienced.  It made me feel better.  After being tested and humiliated by each doctor, I just wanted a diagnosis, I wanted to move on and be treated. 

I started to move on and then realized there wasn’t a treatment for my disease, It was going to either stay the same or get worse.  There isn’t a cure for Alzheimer’s yet.  How does one treat MCI and Aphasia?  I try to keep my mind as busy as possible, exercise, eat good foods; yes, I need to eat more green veggies.  I exercise my brain many times a day with computer games, journaling, crossword puzzles, and other puzzles.

I never in a million years would have thought I would be diagnosed with Early Onset Alzheimer’s.  I was also diagnosed with MCI, which is Mild Cognitive Impairment.   My Neurologist scheduled a 4 hour, Neuropsych test session for me; which I had no idea what I was walking into!!!    This was so hard and emotionally stressful to say the least.  They had me take the same exact testing 2 years later; the results were worse.  At this point, there was no doubt my brain was damaged and not getting better.  I can’t explain or describe the fear of reading and hearing my disease was getting worse.  I felt shock, loss, and fear when reading the test results. 

I felt I was losing part of Lisa; what’s going to happen in my future?  I don’t want to be a burden for my husband. How much longer will I have before I can remember my loved ones?  People around me, tell me that’s a long road away…how do they really know?  

After my husband and I wrote an Advance Directive, a Will, and talked about a plan of action, of what I would do if something God forbid happened to him. As I normally do; I read as much about the disease as possible. 

Bob and I met with our girls, our nephew and our grandchildren; letting them know about the results of my tests.  It was surreal for me.  I’m not quite sure how the family felt, my guess is very sad.  I only know that it was a very difficult conversation to have, but I was relieved to know that everyone was now on the same page.  I felt everyone needed to know my altered behavior.

My plan is to beat this disease down.  I have faith that I will be a symbol for others.   I started to try to think of positive thoughts and things to do each day.  I’m starting a bucket list, it’s going to be long, I’m an optimist 

Until next time…