Hello all,
As a lady who has survived Encephalitis, I keep a daily diary. My memory problems after E means that sometimes I forget where I'm up to with my day.... For example, have I had lunch yet or am I due to be anywhere this afternoon?!?
Do any other survivors also keep a diary? Any tips or hints for making this diary as beneficial for me as possible.
All suggests and feedback are welcomed!!
Hi JensibelI’m talking for my wife sadly was at the more serious end of HSV. We are about 3 years into our journey I purchased Dymo tape machine from Amazon to identify our kitchen cupboards, I’ve printed on clear sticky back vinyl sheet identity’s of each fAmily member picture of me and printed the names on each,
I have a large dry wipe board in our kitchen half is kept for messages the other half lined off with days of the week and dates. Leaving space on each day for our notes on our weekly business/appointments
I tried a diary. at the moment this is to difficult
I don’t want to paint a picture of hopelessness. It isn’t. We have made tremendous progress, more in some areas that others.
Her symptoms are like a computer hard drive with damaged segments. Hit on the damage bit . It stops. Reboot and try again
I heard a new word “Sundown Syndrome “
As the day progresses her confusion worsens
Time is the healer. Stay patient stay healthy and fit
It will improve
Hi Jensibel, I'm sorry to hear of your struggles. I am 2 years into my Encephalitis recovery and I too have a lot of problems with memory. When I do paper notes I have trouble reading my own handwriting or even remembering where the notes are!
Now I put everything on my iPhone. I have daily reminders to take pills, eat meals, and everything else I need to do. I have a daily online note with the day and date as the name. My phone always shows the day and date so I know which note to look at. In the note I have a list of things I am supposed to do and when to do them in addition to the phone calendar alarms. So when my alarm goes off, I look at the daily note and see what I am supposed to do at that time and I can mark it as done when I finish.
Some related things I do include always having my phone with me. I am either looking at it or it is in my left pocket. Other than those places and my nightstand, my phone is never anywhere else. If I were to put it down somewhere, I'm likely to forget where it is. When I have a task to do, I immediately go and do the task and do not stop until it is complete and I mark the task as done in my note. This avoids a situation like it is time for lunch but I wait and read a few more pages of my book then forget what I am supposed to do and whether I had eaten lunch or not.
I use google calendar that allows my wife to add tasks, reminders or appointments. That works better than her telling me and then me promptly forgetting. She can add an entry to remind me to take out the trashcans or to clean up the garage instead of verbally asking me again and again.
Part of my nightly routine is reviewing the day's note and remembering what I had done. I hope that this practice will improve my memory over time. I then create a new note with a title of tomorrow's day and date with the usual daily tasks listed along with anything else I need to do. Sometimes I'll start the next day's note early if I have items to add.
The note for "012421 Sunday" will include "check HealthUnlocked for any posts I can respond to" 😀
Yes I do too I find the bad days almost cyclical like every 5 weeks then 2-3 days and back to normal
Hi Jensibel!
Thanks so much for sharing your story and such a great tip for those who have difficulties with their memory!
I kept a diary for the initial months of my recovery and kept track of every aspect of my day.. it helped me so so much with things like taking my medication, eating, and meeting with friends!
Now further down the line in my recovery I still keep a diary but thankfully I don't need to write as much down! I also found alarms and reminders on my phone help, sticky notes around the house, and relying on family members to remind me of certain things.
Here is a fantastic resource on how to manage memory problems after encephalitis - encephalitis.info/managing-...
I also carry one of these encephalitis help cards in my purse incase I need to explain to someone I may need a bit more time because of my memory difficulties - encephalitis.info/shop/ence...
Thanks again and wishing you all the best
