Tru here. I realize it has been a month since I have last written a blog. There is a good reason these have been less frequent; Doctor and I just call them “events”, but current theory is that I am having tiny strokes. Part of my current diagnosis is “mild to moderate cerebrovascular disease”.
First event was probably mid-February 1999 (year before they first pulled my driver’s license and awarded me permanent physical and cognitive disability). Most recent was about 10 days ago.
Frequency has slowly progressed from every few years, to every year, to every few months … then every month, and now three events in six weeks (every two weeks). Consistently, after each event I experience almost a week of dramatic fatigue and more severe cognitive symptoms. So currently I am at 50% of “my new normal”; one week on … then one week off. The day after an event I will sleep almost 24hrs, then need progressively less sleep every day until I am back to my normal sleep needs in about a week.
So some compensation strategies have been needed:
ALONE: If both husband and adult daughter gone (to work, etc) I have call-in system. If I do not call/text assigned person on the hour every hour, then they will attempt to call me. If they cannot contact me then someone will drive over to physically check on me. When husband leaves me in house, the chalkboard on wall at door reminds me where he has gone & when he will return. When husband leaves me while we are traveling, he writes same on cloth chalkboard my sister made me (that sits in door of car). Too many times i went looking for him because no idea how long i had been sitting in car.
CLOTHING: During the week after an event, I am more likely to have problems dressing. I find my tool of adding a heart with permanent ink on top back of my underwear, and yarn loop on top back of all my turtlenecks really comes in handy, because I have a more difficult time orienting the piece of clothing to how it belongs on my body. These things tell me where the top back is for each piece of clothing (and make it easier to hang on the hook night before). At this point in progression, once I correctly orient where the clothes fit on me, I can get them on myself. During that week, we need to be really diligent about leaving wardrobe doors open so I can see the hook where I hang my clothes for the upcoming day, and my drawers are always left open in step-over fashion, making my underwear, socks, etc visible in the various drawers of my antique wardrobe.
CRAFTING: I don’t try beginning a new crochet project during the week after an event, because I often forget how to “cast-on” during that time. Instead I will work on projects that I have already started. During my “normal” days, I am very busy with family and advocacy projects, or with more detailed craft projects such as frilly crochet collars or gifts of fragrance, but during the week after an event I am incapable of my more complicated projects, so then I indulge some of my more time-consuming projects like Zentangle and coloring. I can add Zentangle-doodles to coloring sheets that I have printed on thick paper (like VERY simple basic shapes of blank coffee cups or gingerbread house frame) then color embellished Zentangle projects that I created. One crochet project for “later” is a bought black open-work lacy crochet jacket, which I have embellished with light purple crochet ruffles along the edges of front, neck and sleeves, only leaving a bits of it unfinished in various places … so that I can feel the accomplishment of finishing a beautiful project, even tho I would not have capability at that stage if it was not mostly done.
FILM: Absolutely no movies or TV that are “new-to-me” are comprehensible at all, during the week after an event, but I enjoy scenery film and after the first day or two I will enjoy oft-repeated movies (for me, including Ice Age series and John Carter of Mars — since my husband and I spent hours reading Edgar Rice Burroughs or Louis L’Amour aloud to each other during years gone by — or one of the classics such as My Fair Lady). So, since my frequency increase has made me more aware of need, I am trying to watch more movies during my “good” week, in order to have greater library available of often-washed shows during the week when my advocacy abilities are very low; when I have much more time available. Need to find some of the Louis L’Amour movies on disk for my library, and some of the other classics — and maybe some with ballroom dancing, or sea turtles.
MUSIC: My largest music change is that during the week after an event is when I will most frequently want my “Nevel” lap harp (which I have removed notes F and B from, creating a pentatonic instrument, see my video). I can never handle music simultaneously with movement or talking from other people. I can seldom handle music with more than one instrument. I enjoy a cappella and solo instrumental most. Even tho in my younger years I greatly enjoyed some of the more raucous groups like The Doors, etc, I can never enjoy them now — instead of sympathizing with the driving need in me (which still exists LOL) it intensifies my confusion and frustration. During my best cognitive days I can sometimes handle symphony orchestra, but rarely for more than one or two songs.
READING: The first few days after an event I cannot register any more than a sentence or two before words no longer make sentences but are only stand-alone entities … then things improve to my “normal” reading level (of ~5th grade comprehension) in about a week. The last of that week, I will begin enjoying books that I have frequently read in the past.
TRAINING of Service Dog: This on-again and off-again process has created huge complications in training of my 4-month-old service dog trainee, “Partner”. Largest problem has been his terrifically high energy level at this age, creating need of physical activities to work off that energy in order to calm down and learn task. So I have been working on getting him comfortable with the … walking machine (always forget name of it — one of my brain’s swiss-cheese holes). So far, Partner will walk on it when the machine is off, and walk next to it when the motor is running … but not walk on it when on.
WALKING: One of the events last month was during my mile walk along the ocean cliff (1/4 mile from our home). I was using canes and developed weakness in left arm and left leg, nausea, and dizziness. So I no longer go on walks alone … period. I now use walker instead of canes when someone accompanies me on walks. During the week after events, consistently discovered very unwise to walk half mile even 5 days after event, and when walking in the yard I have too often gotten trapped by moments of either extreme fatigue or simply too scrambled to move with coordination, so during that first week I no longer even move chickens to or from chicken house without checking in (both before & after) with someone either in the house or on the phone. So about 8 days after event I will walk half-mile, and increase length of walk in increments (to avoid increased leg/foot cramps). Since event frequency became every-other-week, my longest walk was 1.5 miles at 13 days after event.
WORDS: Much more frequent problems in understanding meanings of spoken words during week after an event. These are the times that I will need a “cheat” book of pictures for what the standard side-dishes will look like, because I may not recognize the words for “french fries”, “hash browns”, etc.
- MIXED BLESSING: Looking back, I can see that a good majority of my “first-time” symptoms have been during the week after an event, so now new symptoms are not all that surprising. Also, this process has given me an opportunity to prepare for symptom progression in a gradual way. Compensation strategies and projects previously assigned to “the week after” gradually become integrated into my “new normal”, and new lower-level strategies/projects need to be found for during the week after an event.
Note: I think this last event (about 10 days ago) hit my brain in an emotional area. I am basically a very content and stable person, with few dramatic emotional swings. My brain is one of the ones that has low need for serotonin, since it requires less of the chemical for me to “feel good” (and in fact, what many brains would see as exciting in a positive way, my brain perceives as negatively stressful). But I did not even notice any of my usual physical symptoms during this last event. I just began having wide emotional swings and went into the week of symptoms that FOLLOW each event.
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