Cognitive/Emotional issues during an AN journey

[ppearl214]

Hi all,

tickled this  forum showed up. We know that there is so much we endure emotionally and cognitively during this journey that we didn't sign up to ride..... have been many threads across the forums recently regarding cognitive (ie: memory issues, handwriting, etc)... as well as depression, mood swings, rants, etc.

Welcome to this new "home" to share these issues.... many docs (in my discussions with them) are beginning to recognize these issues post-treatment (and leading into treatments as well).... the ANA noted it as well in their recent "Notes" newsletter as well at last year's symposium (from what I hear). I'm tickled that this is now recognized as a major factor during this time for us.

Post on!
Phyl

[Brendalu]

Yeah!!!  Doctors who finally listened!!  Mine aren't or don't, except my PCP and she is up to date on everything (thank God for Docs like her).  Now id we could get family to listen or at the very least try to understand we might win the ball game.
Thanks, Phyl!

Brenda

[LADavid]

Great addition, Phyl!  Cognitive issues have been one of the things that have affected me most post-surgery and it doesn't seem like anyone wants to acknowledge it.  Here's a link that I came across on the subject.  I don't know where I stumbled across it - it may have been on the Forum.
http://www.dinagoldin.com/anarchive/cognitive.htm

David

[ppearl214]

well, me thinks this particular forum will be extremely active... glad the ANA approved it to be added.

David, I know of the link.... interesting/good reads.... for me, as well as learning patient perspectives about it, I'd like to see the dr's perspective on it. We know the ANA recognizes the issues and is addressing it (ie: synposium, "Notes", etc)...... but, how do we get the physician's to recognize it clearly?  I know of write ups noting the depression, mood swings, many cognitive (ie: memory) and such.... I'd like to see more research, from an AN perspective (as most studies are all-inclusive to brain tumors overall, regardless if benign or malignant). 

Just my 2 cents....

Looking forward to you all sharing here.

Phyl

[LADavid]

Cheri
I'll fill you in on my personal experience pre and post-op when I see you next week.  They were two separate experiences.

You're almost there!  And the weather will be great here for your arrival.

David

[LADavid]

Cheri
Don't worry.  LAX is on the coast and they always get a coastal haze in the morning.  Right now where I am, 4 miles from the House clinic, it's bright, sunny and about 80 degrees.  When you're here next week it will be in the 70's.  Very Fall-like for LA.
David

[Nancy Drew]

I am definitely having the cognitive/emotional issues related to pre-GK.  It was affirming to read the article regarding this subject in the recent AN newsletter.  My problems right now:  difficulty spelling, difficulty typing, hard time finding the right words,  using the wrong words, can't concentrate, get mixed up, feel like I'm going crazy (this one is probably true!!!), get frustrated, overly dramatic, too sensitive about stupid stuff, get feelings hurt easily . . . . the list could go on!

May all experience some emotional wellness today.

Nancy

[CROOKEDSMILE]

This is related to emotinal issues.........facial paralysis has affected my personality. I used to be really outgoing but I find it hard to talk to people when I can't even have an expressive face. It seems hard to communicate without facial expressions. I tend to withdraw from social situations and parties are out of the question. I would rather be at home safe and sound. Although I am looking better my facial muscles aren't strong enough for expressive movements. I don't know if that comes with time or if those are gone forever. A smile takes hard work. A blink takes hard work. Do the movements get easier and stronger with time. This has been really hard. I used to host tons of parties/events at my home and those have ceased.
Angie

[mindyandy]

Wheres my post? I know I had posted something here just a few minutes ago? Oh my goodness, I've lost my mind....THE TUMOR ATE MY SHORT TERM MEMORY....LOL.
I remember posting something awhile back regarding handwriting. At least I think I did???
My handwriting has gotten soooo bad I dont even reconize it. Thats sad. As for my memory....I do miss it....

NOW WHERE WAS I??

[mindyandy]

Wheres my post? I know I had posted something here just a few minutes ago? Oh my goodness, I've lost my mind....THE TUMOR ATE MY SHORT TERM MEMORY....LOL.
I remember posting something awhile back regarding handwriting. At least I think I did???
My handwriting has gotten soooo bad I dont even reconize it. Thats sad. As for my memory....I do miss it....

NOW WHERE WAS I??

HEY I FOUND MY POST......IT WAS UNDER A DIFFERENT THREAD....SILLY ME

[saralynn143]

Angie, as we know facial paralysis stinks. But remember, even though it is hard work to smile and it is hard work to blink, a year ago it was impossible. Your muscles are not strong enough for expressive movement yet, but you do look better -- that's progress!

Hang in there. I do believe it will get both better and easier, just not as fast as you or I would like.

Sara

[Nancy Drew]

Cheri,

I am definitely exhausted because of worrying about this AN all of the time, and I am sure it affects me cognitively and emotionally.  Known fact that if you aren't getting good quality sleep it will affect your mood and mental capacity, etc.  I also think (know) that the anxiety about my upcoming GK is causing cognitive and emotional issues.  Yesterday I called someone three times with the same message (having forgotten that I had already left the message).  Good thing she understands what I am going through.  I am hoping and praying that everything will even out once I have GK.  In the meantime . . . . day by day. 

Nancy

[Nancy Drew]

Hi Cheri,

I have had bipolar induced insomnia for over 15 years now.  I take sleep medication every night, but they don't always help when I am wound up and obsessing about things like this AN.  I am sure things will settle down once the GK is out of the way.  In the meantime, I am just counting the days down.  I have a good support system so that is indeed a plus.  We are all troopers here!!!

Nancy

[Soundy]

I have been on an emotional rollor coaster since surgery mostly brought on by my formaer doctor's attitude that
the tumor was gone and I should be happy about that  and get over it ...

I would if I could ...

I don't like having headaches daily or not knowing what I was about to do or say ... or saying
the wrong words ... like refridgerator... {put your books in the refridgerater (desk) , the cookies are in the
refridgerater (oven) , I rode the refridgerator to school (bus) } ... my post surgery minds just loves the word
refridgerater ... ... it can mean virtually anything ...

I know I have been down alot and maybe even depressed at times ...I am hoping my new doctors , that I have yet to
meet , are more help and more understanding ... the continual pain day in and day out and the loud ringing in my now
deaf ear that I can no longer block out , wear on me ...

[Soundy]

Spooky thing about her drawing is she did it a couple months before the tumor was found ...she
said that that is how she saw me when I had a headache