RSS Feed Print
brain mri
nomemo
Posted: Tuesday, April 24, 2012 6:26 PM
Joined: 3/21/2012
Posts: 439


had brain mri today to check for any brain changes since last mri 3 years ago, especially in light of changes i've been experiencing.  now the waiting game.....but i feel positive no changes!
Lisa428
Posted: Tuesday, April 24, 2012 10:00 PM
Joined: 12/5/2011
Posts: 795


Hi Nomemo,

You sound a little in the dumps.  Sorry you are feeling that way.

I am sending you a cyber hug to help you feel better {{{hug}}}.

We're all in this together.  I have EOAD.

Have you tried calling our toll free 24/7 Helpline @800-272-3900?  They are really great!!  Perhaps it may brighten your day to talk with someone who knows what you are going through.

Hang in there!!

Peace and Hope,

Lisa


nomemo
Posted: Wednesday, April 25, 2012 11:53 AM
Joined: 3/21/2012
Posts: 439


thank you, lisa, for your response.  actually, i'm not down in the dumps.  when i said that i felt positive no changes, i really meant to indicate that's a good thing.  dementia won't go away, so i know it won't actually get "better", so the only other options are a decline or to stay unchanged.  right now i'll settle for unchanged rather than for a decline.  that's what i was referring to.  but i thank you so much for your concern.  and....i'm sure that i will be using the 24/7 help call in the future.  in the meantime, i'm so glad to have this type of forum to be able to actually "talk" with those who are going through what i am...you all understand.

 

when i first got my diagnosis, i formed my own support group consisting of 4 married couples from my church who i've known for over 20 years, a good friend whom i've known for almost 34 years, and a good friend and co-worker and her husband.  i've known them for over 30 years.  the co-worker is actually the speech therapist who gives me the cognitive therapy every week.  we compiled handouts to give everyone at the first meeting.  we spent time educating them on what frontal-temporal dementia is, what to expect, etc.  they all signed up that day to call me every day to make sure i'm taking my meds, eating, do i need anything, or just to talk.  and, believe me, that's all wonderful and means a lot to me.  so much love and concern.  but nothing compares to communicating with people who actually KNOW what you're going through....although you wouldn't wish this on anyone. 

 

In the meantime i've loaned them a book i have..."What If It's Not Alzheimer's?" by Lisa Radin and Gary Radin.  it's a caregiver's guide to dementia and includes vital information on Frontotemporal Dementia (FTD).  although it's for caregiver's, it has given me vital insight into ftd.  i recommend this book.

 

Blessings and peace to all......


RebeccaJ
Posted: Thursday, April 26, 2012 7:55 AM
Joined: 4/19/2012
Posts: 83


Hi Nomemo,

I am 57 with a dx of probable FTD. My behavior seems so much like your descriptions. I can't process too much at once. Entering a room can put me onto a dizzy confusion and complete inability to move. It passes as I become acclamated to the new surroundings. I was a neighbor's breakfast buffet (outings in groups are very limited) and with all of the noise I couldn't approach the buffet table because I didn't recognise the food. I had to stand there and keep looking at it long enugh to process the view and then approach. To me this has become normal, but to others it alarming. Needless to say, I politely excused myself to go home. But it still felt good to get out. I don't care what people say about me anymore. I am taking care of myself and I am proud of that.

Rebecca


nomemo
Posted: Thursday, April 26, 2012 11:02 AM
Joined: 3/21/2012
Posts: 439


you go girl!  hugs and peaceful blessings to you!