Being fairly new to this site, I often get confused (big surprise) as to the dx on each of our loved ones. I thought maybe we could begin a simple discussion on who, what, when and where. See what you all think?
SUSAN L = Susan 53 yrs old, former EMT, Medical Assistant, now fulltime caregiver DH = Jim 61 yrs old, former mid management DX = FTD in Feb 2009 SYMPTOMS BEGAN = at least 5 yrs ago STAGE = Mid, I think HOW LONG TOGETHER = 6 YRS, Married 5 1/2 CHILDREN = His - 2 grown daughters not involved, Mine - 2 grown, 1 in college all very involved, love him dearly. GRANDCHILDREN = 5, the joy in our lives, raising Grandson #1, Dylan age 9 WHERE = HARRISON, ME LO IS WHERE = HOME
Susan, welcome to our family. I too, have confusion about who, what, when, where. It has helped me when people post the information you just gave, under their profile. Doesn't get lost in the "shuffle", so to speak. Just go to your profile by clicking on your name above. Click on "account options" and near the bottom there are places you can enter additional invormation for others to see. I don't have all of the above on my profile but can add more. Lois
Susan-good idea. Even easier is to input more info on our bio. That way if you are reading a post you just have to click on the poster and bring up their info, I do that often as I can't remember all I would like to. Some days I have to click on the computer to see what day it is!
Susan, I have that information on my profile. At the bottom it allows you to add lines to put whatever information that you wish. Some put a lot, others put nothing. Some of us want to share, others want to keep anonymity. Please add yours there as well. That way, when we get forgetful, and can't remember this site's name and it's 10 pages back, we can click on your name and see you!
I'm glad you are sharing and hope others will too! Nora and Lois are right on, as usual!!!
Many people have asked your question since I started this site. Another discussion topic is not necessary - All of the information you seek can be found in the member's public profile. A lot of members wish to keep their personal information private, so the final decision was to put as much or as little in your public profile as you want others to see. All someone has to do is click on the name in blue on the top left hand side of whatever you write in a posted message, and it will take them to your public profile.
If someone does not have a lot of information in there, it is because they choose to keep their information private. Please read the "stickies" at the top of this message board - "Member Contact E-Mail Addresses" and "Use this Discussion to Contact Each Other."
As soon as I get a little extra time, I will be changing the "stickies" so that all of this information is more clear to all of our new (and old) members. But to everyone who is reading this - if you want your information known, please put it in your public profile. Thank you.
Please also consider what I ran into when gathering info for the Memorial.
At the Spouse's discretion the entry would include: Name of LO (first only or full) and age Site name of Spouse (first included if desired) Date of Death Diagnosis (with date if desired) and length of caregiving
Most bios had none of these on them. A few had 1 or 2, and a couple had nearly all or all.
12 of the 17 I have identified have been completed and/or verified by the Spouse. The other 5 are pending.