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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Journaling
I have read that it is important to make notes about day to day issues and behavior of the LB patient. How valuable is this information? What sort of things should be recorded? How detailed? How often? I would appreciate other's input about this.

Mon Feb 17, 2014 6:56 pm

Joined: Sun Nov 10, 2013 9:26 pm
Posts: 75
Post Re: Journaling
At the recommendation of my wife and my neurologist, I started a Blog about my journey at the beginning. It is therapy for me and informative for my wife, family, and others. I will write about things I am too embarrassed to talk about. Sounds funny, but it's me. But a journal, written by the caregiver of the patient is valuable. We use my blog to compile progress reports for our neurologist appointments. Not just the topic, but the emotions I write with! Those emotions are a lamp into how I am doing emotionally. Also, when I have a doctor's appointment, I don't remember how I have been doing! SO, notes, compiled by my wife, give him a good snapshot of my progress and makes the appointment much more valuable for me and my wife. Hope this helps.

Mon Feb 17, 2014 8:38 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Journaling
I kept a journal and it was very useful. I recorded physical issues, behavioral problems and medication changes among other things. Keeping the log in a computer file made it easy for me to search, which came in very handy when talking to the doctor.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Feb 18, 2014 1:21 am

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: Journaling
My father kept meticulous records of every doctors apt. and medication my mother ever took and her response to it. That came in very handy when we had to get doctors at the hospital to take her off certain meds that she had previously reacted badly too.

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Wed Feb 19, 2014 1:48 am
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