Younger Onset Alzheimer’s Disease Q&A Part 2

Yes I took another hiatus from the blog, not sure why except that my organizational skills are continuing to decline. I wanted to update our small wine cellar spreadsheet and it seems now if I have a project like that, I can’t switch to something else until I complete the first task even if it takes several days. Jumping back and forth between things is very hard.

It seems a lot of the questions I received could be broken down into two groups, disability and insurance related, and disease related specifically to the way I deal with things and what I experience. I hope some of the things I talk about are useful. It is therapeutic to me to write the blog.

I won’t speed much time on disability/insurance because I spent most of the last Q&A blog on that but I will give a quick update. I am now off of Medica Insurance as of December 1st. I was automatically enrolled in Medicare Parts A & B as of December 1 by the Social Security Administration. I still needed Part D which is prescription drug coverage. NO one offers Part D in Nebraska unless you are 65. This is yet another example of people on disability under the age of 65 being discriminated against because of their age.  I am enrolled in Medicare Complete Issued through United Healthcare. The plan that I am on now includes a prescription drug plan but it is still an insurance policy written in tandem with Medicare. The cost is less than $200.00 a month all in which is $1,050.00 cheaper that my Medica policy and the coverage is far better. This is not an easy process, people need assistance to navigate through the process. We relied heavily on the AARP. Healthcare.gov is of no use at all if your income is over 48k. You are basically thrown to the wolves.

I had a question about what my average day looks like. It hasn’t changed a lot since I left work over 2 years ago. I am doing a minimum of 2 crossword puzzles a day in the morning when Debra and I are have coffee and she is reading the paper. Of course Max is always at our side or laying on Debra’s legs.

I spend some of the day in my downstairs office working on the computer usually with Max watching or snoring as he sleeps on the floor. He always watches my activities. We try to go out for at least one walk a day which can vary from 1/2 of a mile to 2 miles. Our walks are very dependent on the weather.

 

I usually take a nap in the afternoon. Debra and I (and of course Max) spend the evenings watching TV together. I try to go to bed between 10 and 11 and usually read in bed. Due to insomnia, I have to take an extended release Ambien about 20 minutes before I want to sleep along with a Unisom and sometimes a Xanax if I am feeling any anxiety. That’s a quick glance at my day, really kind of boring. We do go out to lunch a couple of times a week. We seldom go out in the evenings any more.

The next question I will address is in regard to progression of the disease. Debra probably could answer this question better than I can but I will mention a few things. I am having to search for words more. I could explain to you the place I am talking about with all the stores west of I-680 but couldn’t find the name Westroads Mall. One of our favorite restaurants serves Mediterranean food, I sometimes call it the Mediterranean restaurant because I can’t remember the name El Basha. I can be in mid-sentence talking to someone and have to really concentrate on the words. What used to come easy is now becoming a struggle.

Another thing I will mention is spelling. I was always good at spelling. I am noticing more that my spelling is getting worse, especially doing crosswords. That’s why I started doing crosswords several months ago. I can see a word doesn’t look right, but I’m not sure what the correct spelling is. In this blog, I spelled resturarant, insonmia, perscriptions, concentate, and struggel wrong. I would not have misspelled these words 3 years ago. I have spell check on my blog but it doesn’t correct it automatically, I have to hover the mouse over the word, I try to correct it on my own.

The last thing I will mention is memory. I am noticing things that are becoming more troublesome. I have several stories that I have told over the years. One example is going out to grandma’s farm on Sunday’s after church. We would go down to the creek (crick if your from Kansas like me) avoiding the cow patties in the pasture, going to the milk barn with grandma when she milked or going to gather eggs. I can still tell the stories because by sheer repetition I remember the stories. They may be growing over the years! They really are no longer memories however, I can’t picture them or remember them anymore. What I remember is telling the story, the memory itself is gone. I do not remember what the inside of the elementary school I attended was like. I don’t remember junior high except that the choir room and the teacher that I think who’s nickname was Mr. Buzzard (real name Buzzer?) was located in the basement. I do remember something about singing the song “What will we do with the drunken buzzard (sailor)” which we got in trouble for. If I remember correctly, he slammed his hand down on the piano and stormed out of the room. If any classmates read this and remember it, please send me a comment!!!

I have bits and pieces of high school, the commons, cafeteria, where the offices were. I remember some of the classrooms, The first left (south was chemistry and biology. The west hallway I think was industrial arts. The gym to the north of the commons. The south side of the building was what I think they called the quadrangles. I remember Mrs. Carr in drama. I remember Mr. Busby in music but that could be Junior High, not sure anymore. I have all of my class yearbooks, I look at the teachers, and some of the students and don’t remember if I had a teacher in class or if one of classmates and I were friends. I do still have a couple or random memories of Gene, my best bud dragging main in my car or his. I remember dragging main once with Barney (his dad was town cop at the time), pealing out on the gravel at Kleppers and getting pulled over by Barney’s dad. I think Barney became a state trooper in Oklahoma and then moved to KC, physical therapy? I remember where Gene, Barney, and the Sherman’s lived in Anthony, but not really anyone else. Mom kept me updated about some of my classmates. I know before she passed away she was concerned about my lack of memory of some of the people I was asking about.

Grandma and Grandpa’s Wilson’s house is gone now, replaced by the livestock auction. I remember driving or riding my bike down the long lane to their house. I drove by Grandpa’s old body shop in Anthony, it was a lot smaller than I remember. I remember Grandpa eating his bread dunked in buttermilk (yuck), he loved it. Driving around the Anthony Lake is another story, no memory of it except I can still picture in my mind an old house somewhere around the lake that very run down. Haunted??? Maybe we joked about it at the time, not sure. I remember driving around with Gene and Linda M, Susan G, and a third girl I can’t put a name too. I think they all had boyfriends, we were just friends dragging main and going to the lake??

I do remember where Mom and Dad’ marker is at the cemetery. I also know where Tony D lives, I actually surprised him on my last trip to Anthony and drove into his driveway.

This is me today writing this, Debra and I decided not to have her edit. We thought it important that people see how my brain is organizing thoughts to write this blog. You will probably notice that my thoughts are more random and disorganized than my earliest blogs.