Handwriting just not the same.. nor is memory.

[4cm in Pacific Northwest]

Before my diagnosis of my AN tumor one big thing that was happening to me (amidst other bizarre symptoms) was that my handwriting was becoming more and more illegible.)

I did my first undergraduate degree in Fine Arts. Years of practice mainly in the visual arts…Then taught high school art, drama and dance (plus western Civ.)… and a couple of evening college courses too. I sure appreciate the time skill and effort that went into the work that is posted on this thread. Thanks so much for sharing your gift & talent with us!

You know my drawing and painting skills are not what they used to be … but I am not exactly practicing hard, at the moment, - as I seem to not have the time to fit this in.  Truth is I have not tried to draw or paint artwork – since the ole craniotomy  . Lately I am interested in different things and not feeling the drive to do art -that I did on my youth. Oddly enough currently I am much more interested in learning about neuro-science than “the arts’ (In my past “the artsâ€? were the most dominant part of my life)

This whole AN journey has been tough as it really has not only been a physical rehabilitation (vestibular, neuro musical facial, hyperacusis- physical therapies etc) but ALSO “vocational� rehabilitation - for me. The whole thing has really been one educational experience… that never seems to end.

I used to play the flute- however with Bell’s Palsy I have lost my embrasure… and became tearful when I could not get a sound out…So I gave my flute to my 4th grader and she is starting to make wonderful music with it. I cannot help her with the sound- but I can help her with the fingering. At first I was sad I could not play but now she is playing I am just tickled pink.

I was once a dance director… Some days my balance teeters… and some days I have been caught riding a bike with no hands (and chewing gum at the same time). It seems if I do not work at my balance regularly- I loose it. I can now pirouette again but by no means will I ever be center stage again… but hey I can still be a backstage supporter to the more capable (and fit) dancers.

Drama- well with synkinesis it is most challenging with facial expressions. But I still love to go to theatrical productions… and support others.

I was a big connoisseur of music but now I cannot listen to bass tones as my hyperacusis causes ringing in the dead ear… I never thought I could live without my music (or CD player) … but you know- I can. I now really enjoy the sound of the birds that I seemed to have drowned out with the stereo blaring throughout the years -of my youth. I am also reading and writing much more than I ever have.

I just keep moving forward… I have to!

First of all I must share with you that one of my biggest ANA heroes is “Jeff�.

Here is a glimpse at Jeff
http://anausa.org/forum/index.php?topic=6645.msg68119#msg68119

Jeff was a former band teacher who lost hearing in both ears due to NF2. In anticipation of loosing the hearing in the 2nd ear he learned sign language, lip reading and trained to take his teaching career further into something else (that did not requite functioning hearing). He did a certification in library science and technology… and teaches this subject now- instead of band.

Jeff has been a huge inspiration to me. This last fall I have not been helping out in the fine arts rooms of my kids’ school- but actually in the library. The hyperacusis I experience was a big motivator for to push me to a “quieterâ€? learning /teaching environment. After  years of being a creative person, who was often “free spiritedâ€?, I cannot believe how much I LOVE the order, structure and predictability of the library. I am beginning to realize I am much more left brain than I ever thought I was. (Gee maybe the tumor was not allowing that side to develop all these years! LOL)

I went on Jeff’s suggestion to try this field out and then contacted my eldest child’s high school to see if I could volunteer in the library there. I figured that that this would be better than just going back to school to discover that this is not the field for me- after paying graduate school tuition etc. I have found that I just LOVE the library. I am seriously thinking of actually doing a degree in library science now.

Rather than focus too much on what I have lost I am trying to focus on what I do have and how can I find a new way to use this, express myself … and be of service to others.

I think it is important to reflect on our experiences but at some point we have to just “keep moving forward� and find out what our other potentials are. Yes it is important to grieve the losses we have (hearing, face, balance, energy levels)- but at some point we got to keep walking down the path- even if it is a new direction… or wearing different shoes and a new hat.

What I am finding odd is that friends and family have been complaining about my handwriting for years… are all commenting how much my writing has now improved    And now post surgery, with the pressure off my brain… I have to admit my handwriting has improved- tenfold. But you know I actually took time to work on my handwriting and practiced at it over this past year. Having a 3rd/4th grader, in the house, during my recovery, gave me an excuse to practice alongside her -as she did her handwriting homework @ the kitchen table. This weekend I proudly wrote in cursive, with icing, on my daughter’s cake- “Happy Birthdayâ€? … and it looked like a professional baker did it. I actually took a photo to document for myself that my handwriting HAS improved. Basically I had to go back to working with my 4th grader, with the basic steps of learning writing, and alongside her I seemed to benefit…

Before and after surgery I was having some short term memory issues-
E.g.
   Ã¢â‚¬Å“Where are my keys?â€? 
   Ã¢â‚¬Å“Where are my glasses?â€? 
   Ã¢â‚¬Å“Where did I put that important piece of paper?â€?
   Ã¢â‚¬Å“What on earth did I come downstairs for?â€?
 (Sound familiar?)   
 I knew I had some “issuesâ€? that needed work… so when everyone was away at school I have to confess I dug out the old preschool memory games and practiced with them. You know the ones where you place the cards face down and you have to remember where they are to make a pair…  There I was matching up Goofy, Donald Duck, Daisy and Minnie – in pair Cards… It is working for me...

I have to agree with Steve’s recommendation- to read THAT book. (The Brain that Changes Itself.) I truly believe that the brain IS plastic.

This link is for kids- it explains what Brain Plasticity is.
http://faculty.washington.edu/chudler/plast.html

Hear is a 6 minute video from the Discovery Channel on You tube
(This is an epileptic child, not and Acoustic Nueroma adult patient- but there IS a point made here that one part of the brain in compromised other parts CAN compensate)
http://www.youtube.com/watch?v=TSu9HGnlMV0

Has anyone heard of this?
http://www.sharpbrains.com/blog/2007/12/02/brain-fitness-program-and-neuroplasticity-pbs/
(I am curious to order it)

 I challenge those of you who are having handwriting issues to head your local department store and go to the kids’ “toys and booksâ€? aisles. Get a couple of workbooks on handwriting… and just practice again… you just might be able to “retrain the brainâ€?… but not if you are not willing to try and practice at it.

I think it is important to find out what sorts of exercises we can do to improve on our situation; whether it is through physiotherapy, brain teasing exercise games, or simple activities that we do alongside kids… so we can relearn and perhaps re-map our brains.

Moving forward,


DHM

[pauline]

My goodness!  I have to tell you how much your post meant to me as I struggle with my grief
as a life-long pianist.  My music has always been a part of my life as it is also my job for almost 30 years.   My tinnitus is SO LOUD that listening to and playing the piano is no longer a joy .  I have been grieving and trying to hang on to my life as it has been.  But your post gives me encouragement and the incentive to go on with my life and find something new.  I will keep music in life in some way like learn to play the harp so I can play a duet with DonnaLynn!  The harp is one of the few instruments I can listen to!  Thank you for my wake-up call to do something different!

Pauline

[Soundy]

At my one year anniversary I kinda flipped a little over what was lost ...before anniversary and since
mini breakdown I had been and I am continuing to go on with life and channel my self in other directions...
do what I can and try not to worry about what I can't...I have no real choice other than crawling in a hole ...
you just have to learn to live with your  new normal and everyone's is going to be different...

I bought the book  , The Brain That Changes It's Self , and lost it  ... it is probably hiding with Black Wave
which I swear the dog must have ate ... 

[MaryBKAriz]

Thank you all for the wonderful support. You all help me so much. The ideas are flowing and the help enormous. I will spend more time after writing this going to the links listed. I appreciate the time put into suggestions because together we will find new paths. I am very "lucky" to have had some other very hard turns in life. The new paths always lead me to wonderful unexpected growth and even joy. I am curious where this will lead.

Pauline, it was SO wonderful meeting you in person last night at the AN meeting! My heart goes out to you so much. Being a musician - this has to be beyond a challenge. I don't even know what to say but I just want you to know, you have someone here in AZ who understands to some extent and I am sending you a hug. Please stay in touch when you can. It was so terrific meeting you.

I will update my Cyberknife Adventure thread today with what my doctor said yesterday afternoon before the AN meeting about balance. What an enlightening day it was. I am looking forward. YEA!

Take care,

Mary

[JudyT]

I have never read this before.....very helpful in relationship to some of my issues. My brain gets ahead sometimes of hands.......sometimes behind. I use online banking/bill paying as writing checks is very annoying....date,amount signature vary from check to check....sooooo I use debit card more and more when shopping and online payment when applicable. Game playing...Jeopardy etc. not good now, the one with the squares ( can't remember the name) used to be easy for me.....now frustrating. Crossword/Suduko impossible...call sons and grandchildren by wrong names, sometimes a completely different name.....called son Tom....Rudy the other day.....Rudy is my hairdresser....he looked at me and laughingly said "RUDY"?? Geeeez Mom. My faithful dogfriend Ruby I often call Mollie (my old passed on dog) What's with this??? I am very sharp on some issues......others no so good. Names are not good....events good.....figures good....but I must use calendar, post its etc. to stay on track. Mornings much better than late afternoon/evenings. I note things and make lists to follow. I keep at it though and try to stimulate the brain as much as possible. I challenge myself often and try hard not to become agitated by these circumstances. Short term memory not the best.........long term good. Maybe that's why "OLD" people talk so much about the past??? I understand now and it's okay!   Judy

[ppearl214]

It is ok, Judy!   ANA is also recognizing this and I'm thrilled to hear this. Now, wishing most dr's would also understand that some of us do endure this.

I signed a graduation card the other day and had to address the envelope.  I have such a difficult time handwriting now.... took me forever and getting tired of the "chicken scratch" of my writing (my writing use to be kinda pretty).  I'm sitting here in my office now (don't tell my bosses! shhhhhh) and looking at hand written notes I have made on paper on top of my desk.     Things have really changed here as well.

Phyl

[jerseygirl]

Phyl,

I am just curious: is your poor handwriting related to AN or other ( unfortunate! so sorry to hear this) medical issues? What do you think?

                Eve

[JudyT]

Donnalynn.....I hear you. I have a beautiful baby grand piano in my living room. I have played since I was 7....I've studied my whole llife and can only play a few minutes with special glasses before I am discouraged. I am mortified if someone comes and asks me to play..........I can't play for anyone. I feel for you being in a group. What a challenge.....I don't think I could do it. That insensitive (you know what) to treat you that way. You have to try and remember it's about her not you. Anyone that behaves in than manner has more issues than you do. Don't let her discourage you.....keep going as long as you can. The harp is a beautiful instrument......angels play them....don't you know? I guess a devil gets in there once in a while too.
Judy

[Kaybo]

Donnalynn~
You give that lady's address to me and Jan, Lori & I will go plant bean sprouts in her yard (they grow & grow and every time you mow them, they come right back up before the grass) and then send her a dead fish in the mail!!!  So there...teach her to be mean to our dear, sweet Donnalyn!!

K

[klangel]

WOW i am so grateful to have stumbled onto this thread. all the grieving ive done and still do for my lost life.... i was a florist (mostly designer but also lots of physical work too) for 31 years pre AN. i can no longer do that work and am now what my husband and i call a handicrapper (he is one too -long story short he was in a truck accident work related and i was taking care of him when i got the dreaded diagnosis) ive since ceased most of my writing and reading which i have pretty much done all my life because of those lapses in memory , the concentration it requires to write and the severe eye issues i experience. i do manage to crank out artwork though and have made it the biggest part of my life these days. i listen to my music only on the "good" listening days because i too have really bad sounds in my head. you guys are so inspiring it shames me. it seems i have been fighting so hard to love my life that i may be missing it! i have been concentrating on what i cant do instead of all the wonderful things i can do. i should be grateful that i found the most beautiful place to live and that i can wake up and choose to do my art every day instead of mourning all the loss. so what if i lose tracvk of what i am saying or doing. so waht if i get tired so easily or cant function in noisy places. so what if i walk with a cane and put on a little weight for lack of exercise. and the biggest so what is so what if people dont understand what it is to be inside a damaged head! it really doesnt matter because i know the alternative is death and i dont want that yet. ive been gradually coming to acceptance but this thread has sped me along considerably. ive spent the last 4 years angry at god and behaving miserably whaen i should have been grateful that i still have my hands and eyes on good days. and that i can still do artwork. some of my fiber art i can even do with my eyes shut on a bad eye day! and i recently had my first showing in scranton pa which was well received and really cool! also did some entries for the international fiber art collaborative. thank you all enormously for making me see that i should be concentrating on the i cans and not the i cants!    many hugs and kisses, kerri

[Kaybo]

Kerri~
This is a journey for everyone - no journey is the same for two people.  So glad that this thread helped you to see that MAYBE there is a different way to look at things.  I learned a long time ago that "you have to fake it 'til you make it"!!  Some days I sure don't feel like doing anything, but I just have to keep on going.  I think it certainly helps when you have kiddos - you don't really have much of a choice!!   Good luck in embracing your new outlook!!

K

[leapyrtwins]

Donnalynn~
You give that lady's address to me and Jan, Lori & I will go plant bean sprouts in her yard (they grow & grow and every time you mow them, they come right back up before the grass) and then send her a dead fish in the mail!!!  So there...teach her to be mean to our dear, sweet Donnalyn!!

K

Wow.  Kaybo, I didn't realize what a tough cookie you are.  Does Lori know you've committed us to strong-arming people who pick on Donnalynn? 

I'm not objecting to your ideas - I think what Donnalynn shared with us is just appalling.  That lady should be ashamed of herself!

Note to Donnalynn - don't let the turkeys get you down 

Jan

[ppearl214]

Hey Phyl,
 how is the ANA recognizing this all?? Can you clarify?

ANA is recognizing the emotional and cognitive issues we, as AN patients, run into. I thought they had done recent articles or such in copies of "Notes" (the ANA newsletter) and I'd have to backtrack in my copies at home to find them. They are also hosting emotional aspect workshops at this summer's Symposium (noted below, taking from the ANA webpage for the symposium):

"Coping with Emotional Impact of AN Treatment
Barbara Hyatt, MSW, LCSW
Serious illness can create an emotional burden for the patient and the patient’s family. Explore strategies for dealing with the emotional impact of acoustic neuroma."

 
"Treatment of Depression
Michael Ziffra, MD
Discussion of neurocognitive and emotional impact of AN by a psychiatrist experienced in the care of depression."

I'd still have to dig more for other ways they are recognizing these issues, so bear with me while I search.

Phyl

[stoneaxe]

Interesting thread...i've just gone through it all and I can relate to a lot of what I see. I've been in denial or ignored some of the things discussed but I definitely noticed that I'm not as sharp as I used to be. I've been a mechanical designer (piping systems) my whole professional life. Things that used to be easy for me now require some serious concentration, which is tough since it seems like I am also ADD all of a sudden. Some of it may just be getting older but I know that there was a sudden onset after radiosurgery for much of it. One weird thing I've noticed while typng or writing is that I will use the wrong word often, particularly words that sound the same, there instead of their, whole instead of hole. I always have to closely edit what I write these days. Lots of other little things that are cognitive/memory related too. I haven't noticed any change in my creative side though...maybe even some enhancement. Maybe a right brain vs. left brain thing?

[JudyT]

Cheri .....soooooo many challenges. My issues began at 6 months out.....now almost 4 years still bring some surprises. This site has been so benificial to me.....to actually "talk" to others facing same issues. I definetly feel very different than before,yet grateful for overall success....it's dead...I'm not..........being #1 on my gratitude list.