As my wife slept in her new bedroom, this week I began going through the almost four decades of paper she had accumulated and would never throw out. I am separating the papers into several groups: to be shredded, to be tossed, to be retained myself and papers for the children.
Working for a couple of hours each day, it will take me about ten days to go through all of the 38 boxes, then one trip to the dump and one trip to a shredding company and I’ll be free of this trash that has haunted me and which she would never let me touch.
Years before she had begun the practice of typing out notes and questions for any doctor visit; perhaps this was an early sign of her disease?
Partway through the fourth box, I came across her note for her very first visit to a neurologist, just a tiny bit over four years ago.
3/5/14 First appointment
-Appropriate words: I Want to say a thought, and I often can only get the ﬁrst letter of a word, or a word that is wrong with some similar spelling but nothing to what I am meaning.
-When tired, thinking of other things, or trying to do something, it gets worse. Or talks too fast.
-I have just noticed that often, if I try to picture the word on my forehead, the word will come up & I can say what the picture is.
-Spelling: I used to be a very good speller. Now, frequently every day, my brain cannot remember simple spelling. ~
-Reading: I cannot read well now & sometimes not at all. I read part or all of a sentence, reading the words but not getting the meaning of simple words. Several times, not able to concentrate.
-ADD: Sometimes these feelings seem like my ADD but intensiﬁed. (ex: I can’t keep my thoughts on what I am doing (like reading) long enough to get things done or read)
-I think these things have been with me all my life, but not like this.
-Now it happens all through the day and I don’t really want to talk w/anyway except my husband & kids. I have ticks (sic): arms, legs, shoulders,chest
-My math is the same (not great), so is doing jigsaw puzzles. I can organize the house, but not my time. Strangely, when I worked at a job where I put on conventions with 23 breakout, meals, etc., I did great.
How far we have come since that time – and in such an unhappy direction.
In regards the picture above, about two weeks ago, I was having a tough day and I mentioned to an online friend that what I wanted to do was have a drink and go to bed with my blankie (a reference to a character in a comic strip who hauls around his blanket.)
Two days later a box appears containing a small, very soft blue fleece blanket with a teddy bear head at the center.
To distract her when she was moved to the hospital bed, I showed it to my wife and she took hold.
Each morning, after breakfast and clean-up, the care giver gives it to her and she holds it through the day.
At night the soft blanket with the teddy bear head is draped over a small box on the bedside table.
Just a record shot for the memory.