ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: ppearl214 on September 24, 2008, 08:58:32 am
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Hi all,
Ok, I'll get this going... I have noticed, for me... that not only is my short-term memory outta whack, so is my handwriting. If I write a check (sorry, not writing you all blank checks... :) )..... or signing my name on a document or such... I have to take an extra minute before the pen touches the paper. Seems sometimes my mind, in concentrating on writing something, moves faster than my hand.... and may turn out as "chicken-scratch" handwriting or I make too many hand-written errors and have to scratch out what I wrote.
You all run into this... or other cognitive issues besides the 2 I noted?
Phyl
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I have these issues too. I used to have a great memory. Now, I have had to try to get into the habit of using tools to help me remember. Part of my responsibility at work is kind of acting as a "help desk" for computer and network problems. It used to be that people would tell me a when we met in the hallway, the things that they need help with, I would remember. Now, if I don't write them down or record them electronically, I forget. So I use more tools to remember.
My fine motor control is lacking too. Thankfully, I am right-handed and my left side was affected by my stroke/brain resection. But typing now is a joke. I just can't touch type at all - not that I was very good before. ;D
Jeff
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Same here, Phyl. When I go to sign something, I have to think about how to do it. Once I get started, it's fine. But it takes a moment to get started. I also have this thing with mouse clicks. I pause before I click it because I occasionally don't remember what I'm doing. And as far as the hand-writing -- I used to get compliments on it -- now it's a mess. And one other thing that really has me bothered -- either they made the questions on Jeopardy tougher after my surgery or there's something wrong with my memory. I used to be able to "run the board". Now I'm lucky to get an answer or two right.
David
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Handwriting - I would say mine has slipped as well both in terms in readibility as well as errors. Similar sense of the brain moving faster than the hand. However, I'm not convinced it's AN related as much as the simple fact that my practice of writing has been reduced to signing my name ( rarely a problem) or writing checks ( not comfortable with on line banking yet :)). I think we all use computers so much that we lose the ability to stay in sync with writing. Something for everyone to consider as well as opposed to immediately assuming it's AN related. It may be something increasingly common in non AN patients as well ;)
Memory - sometimes I can't recall a name or some other fact on demand like I used to but it pops in later. Don't know if that is AN related or a factor of age and life stress
Mark
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David,
I think that since Jeopardy has a teen week and a kids week, they should have AN week and allow those of us a little slower than before a few extra seconds to ring in!
Phyl, yes, my handwriting has turned to chicken scratch! Keep in mind, I went to Catholic school all my life and had to take Penmanship lessons up until I was in 8th grade so it used to be pretty darn near perfect before my surgery. Now I can barely read it myself!
And what was the other question you asked? I can't remember.... ???
Lori
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ah, m'dear Mark... see, like you, I do much computer keyboard work as well.... but... I do an exceptional amt of handwriting as well (ex: I was voted Secretary for the Disabilities commission that I am on... thus, I handwrite the meeting notes, etc)..... I've notice my cursive-handwriting totally downhill. Block print handwriting is fairly ok... but my cursive is still way off.
Like you, I'm not totally convinced that the AN (and treatment) did this to me, but I am a firm believer that it is a contributing factor to it...... to what %, I have no clue.
Just my take on it.
Phyl
Handwriting - I would say mine has slipped as well both in terms in readibility as well as errors. Similar sense of the brain moving faster than the hand. However, I'm not convinced it's AN related as much as the simple fact that my practice of writing has been reduced to signing my name ( rarely a problem) or writing checks ( not comfortable with on line banking yet :)). I think we all use computers so much that we lose the ability to stay in sync with writing. Something for everyone to consider as well as opposed to immediately assuming it's AN related. It may be something increasingly common in non AN patients as well ;)
Memory - sometimes I can't recall a name or some other fact on demand like I used to but it pops in later. Don't know if that is AN related or a factor of age and life stress
Mark
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Hi Phyl
I truly believe that in some cases handwriting is directly related to the AN, either due to size and or location. Chet's handwriting changed in the last months prior to discovery of his tumor, it was steadily declining. Gee, we missed that clue!!! So easy to blame it on being in a hurry or being tired. He lost most of his small motor skills after surgery which included handwriting. On the plus side over time he was able to print with his other hand, very readable, and to print with his tumor side hand, tho it wasn't as neat, but very readable. I stress print, because he never regained the ability to write in cursive.
As to your Secretary notes. Isn't that why they make laptops? <g>
Hugs
Raydean
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Mostly I have problems with typing. Sometimes it takes me re-reading my posts many times over just to see if I have made sense. And, then once I have posted, I realize that I didn't make sense even after re-reading my post several times. And my spelling in getting really bad. I think some of my stuff is anxiety related because I am two weeks away from treatment. Sort of reminds me when I was pregnant. Right towards the end of my pregnancy, I had to quit writing checks altogether. I would go to the grocery store and instead of writing the check out to Albertsons, I would write Pay to the Order of: Grocery Store. Today when I went to pick up my car at the shop, the woman gave me the receipt to sign, and I just put it in my purse. Felt sort of stupid when she said, "That is the one you sign and give back to me, and then I will give you the one you can keep." Have caught myself doing that a lot lately. I used to be proud of my hand writing, but now I feel like "Sybil" with the multiple personalities (David, Sally Fields was great in that one!). Here's to writinghand and yromem! Nancy :P :P :P
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My handwriting and memory is fine - my trouble is typing and speaking :P
I find that my brain just doesn't keep pace with my fingers when I'm typing or with my mouth when I'm speaking.
I often think one word, but say another when speaking. And when typing, although I know what I want to "say" my fingers just don't move fast enough anymore to put it all down. I've always been a fast, accurate typist, so that's not the issue. But post op I have to re-read everything I've typed to make sure I haven't left out entire words or typed one word when I meant another ::)
Jan
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OOOOh OOOOH me me
I think I posted sloppy handwriting before....I think.... ::)...sorry my memory is terrible. Yes I am in the same boat....I even have a hard time with spelling anymore.
I used to be somewhat inteligent.....I THINK MY TUMOR SUCKED UP PART OF MY BRAIN....LOL
Yes my handwriting has gotten sooooo bad that I dont even reconize it :o....WHERES THE SPELL CHECK????
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Hi,
It is great that we now have a new section for cognitive/emotional issues but I hate to say that handwriting is considered a motor (movement) issue, not a cognitive one. Memory is a cognitive issue, however, and you can have one without the other or both at the same time.
After the first surgery I had both handwriting and memory difficulties but fully recovered years later as evidenced bv the fact that I started graduate school a few years ago and did not need extended time on tests. It is very paperwork extensive and I could accomplish anything. However, after the second surgery, I was back to the hemiparesis where I could not even grip a cup at the beginning and my name took minutes to write. I improved tremendously but still write much slower than normal now; it comes out much sloppier and I am too tired to continue after about 10 sentences. However, I do not have memory issues. I kept organizing everybody in the house, never forgot school lunches and reminded everybody about the upcoming deadlines. I should add that my leg was affected as well and I still limp if I skip my strengthening exercises.
Eve
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Lori
I agree! AN week on Jeopardy. One question (answer) 30 minutes to ring-in -- if of course any of the contestants recalled why they are there. By the way, something off the subject, I stood in for Alex Trebec on the Jeopardy stage when I was on the Bucket List (regularly standing in for Jack Nicholson). It was one of the greatest experiences I've had.
David
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You guys need to read The Brain that Changes Itself, by Norman Doidge, M.D.
There is a section where he describes an interesting therapy effect, and a theory to explain it. When people practice speaking, such as memorizing speeches, their handwriting improves. If someone does lots of handwriting, especially nice italic cursive, not just scribbling, their speech will improve as well.
The theory is that some section of the brain is dedicated to the task of sequencing rapid motor movements, ones where there is not enough time to do all the adjustments on the fly. Both handwriting and speaking are examples that require bursts of very rapid and precise movements, all under the control of nerves firing, of course.
My notion is that since the AN can mess with our speech to some degree, it forces the "rapid movement sequencer" to go through some adaptations as well, thus messing with our handwriting at the same time. I like this better than the idea that I use a computer too much or that I'm just getting older, although both of those are true too.
Eve, though it is a motor issue, it is at least a high order motor issue, and I think we can interpret Cognitive for the purposes of this board as meaning "brain thingy", rather than a more precise definition. ;)
Steve
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I used to pride myself with my handwriting. Not anymore. I even forget how to spell my last name and that is a problem when you are signing a credit card receipt!
Brenda
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Steve,
Thanks for the book recommendation. I looked it up on the Internet. It looks very interesting, and I can't wait to read it.
Grace
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I read this thread yesterday, but just really didn't feel like responding - I think I am feeling better today so here goes!
I was totally paralyzed on my right size from the surgery induced stroke so I had to COMPLETELY relearn how to write. I still write on the board with my left hand because it just took too long with my right. I do write on paper with my right. When I am "fresh," I think my handwriting is pretty good - and even get a few compliments on it. Little do those people know that that is one of the BIGGEST compliments I could receive since I couldn't do it at all for a while!! I was teaching 1st Grade when I went back so I just did handwriting WITH them instead of just showing them and monitoring them!! In fact, if you give me "highway" lined paper (my name for it), I have practically perfect D'Nealian writing!! (For those of you who aren't teachers, that is a style of handwriting that a lot of schools use now - easier transition to cursive.) Of course, when I am tired, the writing looks AWFUL. In fact, handwriting (NEATLY) was always such a big deal to me that writing Thank You's after my babies usually reduced me to tears - it one of the few things that has REALLY bothered me most about this whole AN thing - that I could not write more than 1 or 2 notes w/out my hand becoming fatigued & them being messy jumble!!
K
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Steve,
I read the book over the summer upon your recommendation. Great book, thank you!
I think it's a great discussion but the problem with labeling motor issues as cognitive ones is perpetuating the myth that some people (even professionals) have that if you cannot handwrite that means you cannot think straight and if you memory is impaired, you cannot learn either. Anybody can see what we are discussing and while the "brain thingy" just among us is fine, I don't think it is fine when discussing this in everybody's full view. We can have motor issue without cognitive ones and while I, for instance, cannot handwrite very well or speak very fast, that does not mean I cannot process rapid speech and require simplified instructions, constant reminders, even detailed instructions on how to find the room I have been in a thousand time!
On a different note, I just purchased Dragon Naturally Speaking software that allows to convert spoken word into typed on screen. So, that means if I speak into the microphone, it will type. I cannot get through the paperwork in grad school any other way because my typing is impaired as well. I am so slow! I will be required to talk a lot, so it is interesting to see if my handwriting will improve also. Right now it only gets better with constant training. I literally rewrite paragraphs while timing myself every day. Such a boring thing! I will be overjoyed if Dragon will take care of both speaking and handwriting!
Eve
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Eve~
I so hope that the "DRAGON" will help you & make your life easier!!
K
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Thanks for your well wishes, K! I will post here on my progress since a lot more ANers than I realized have handwriting/typing difficulties. I just assumed before that it is a "privilege" of giant tumors that I once had but apparently not.
Eve
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Eve,
I've heard of that software before. A friend of mine got it a few years ago because he's terrible at typing and spelling, so he thought it would help. His e-mails would wind up sounding like some sort of secret code because, apparently, he wasn't very good at speaking clearly either! Some of them were funny! But I think you will be fine with it - his wife did fine. Apparently you have to have the abilty to communicate in general before it works!
Lori
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Great topic! My handwriting has taken a nose dive. My facial neuroma is on my left side and I am left handed. It was one of the first things I noticed after I recovered from surgery. What I find most frustrating is my memory......I can't remember a conversation I had five minutes ago. I also lose my train of thought during a conversation. I use to like to talk!!! One good thing I know my husband ears aren't aching any more ;)
Anne Marie
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I think it's a great discussion but the problem with labeling motor issues as cognitive ones is perpetuating the myth that some people (even professionals) have that if you cannot handwrite that means you cannot think straight and if you memory is impaired, you cannot learn either.
I totally agree, Eve. I made the point in a topic started by Marci recently that most if not all of our brain issues stem from sensory and motor issues, not true cognitive impairment. Our minds are working just fine. The trouble is that as humans we are so dialed in on our senses and motor movements that any interruption in the flow throws us off. The stumbling over words, for instance, is mainly due to hearing and motor control issues, but it has the effect of making us feel like we can't speak properly, which makes it feel like a cognitive/emotional issue. There is much to be discovered about the links between our cognitive processes and our sensory and motor processes.
Steve
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I`m W+W and have noticed I`m not as sharp as I used to be. Can I atribute this to an AN or just the normal ageing process n at 60? What I do try and do is alot of brain type of execises like chess along with as much other things with involve me mentally and physically. Good Luck Mickey
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I used to pride myself with my handwriting. Not anymore. I even forget how to spell my last name and that is a problem when you are signing a credit card receipt!
Brenda
I've seen myself do this (mis-spell my own name) ... long before I knew about then AN .. and wondered why I did that !!... and very very very .. did I say very... slowly it has improved...
typing was very bad at first too ... but I get to pratice a lot.. I live on the computer.... and even then.. it has taken a long time....
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I used to pride myself with my handwriting. Not anymore. I even forget how to spell my last name and that is a problem when you are signing a credit card receipt!
Brenda
I've seen myself do this (mis-spell my own name) ... long before I knew about then AN .. and wondered why I did that !!... and very very very .. did I say very... slowly it has improved...
typing was very bad at first too ... but I get to pratice a lot.. I live on the computer.... and even then.. it has taken a long time....
My writing sucks ... I leave gaps in words more than a few letters long ... my name for instance is Brenda... on a
check on cursive it is Bre nda ... operation may come out ope rati on ...actually looks worse type than in writing ...
if I print I don't leave gaps ... and I also will mix print and cursive in sentences and even within a single word...I just
avoid writing as much as possible ...did go to teachers and explain to them what is going on so they wouldn't think
my kids are trying to forge my signature on stuff...
as far as memory ... that is not great either... as long as no one talks to me I can complete a task ... but lets say
I was walking to the bedroom to toss a load of clothes on the bed to fold (I do it in front of TV) and someone passed
me in the house and ask what we were having for dinner... I am just as likely to put the laundry down on first surface
I come to that is big enough to hold it and go look in the fridge or go off to do some thing else ...
If you all could see a post I type not spell check you would think English is my second language ... I always spelled
good but now it is really bad... I never spell remember right ... it looks like this ...remeber ... (I won't correct on of the remembers ) ...it is funny that the word remember always gets misspelled cause I just can't remember stuff :D ...gotta
laugh ...or cry ...laughing is a bit better
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OMG, so me ! hand writting or anything on left side where AN was is weaker. From writting to typing here. ::) And my short term memory is not good.
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Hi,
I will definitely post here about my experience with the software. Before I purchased it, I tried it in college and it recognized my voice with no problems. I speak slowly nowadays anyway; in fact, I do everything slowly, so it should not be a problem. The software does force you to enunciate every word which is actually a good thing since this avoids the "secret code" situation! ;D
Eve
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I thought I would chime in on this interesting thread, even though I don't have real cognitive issues. I'm probably as verbose as ever, both in word and speech and I never have much trouble thinking about what to say (or write). However, my handwriting - mainly, my signature - definitely deteriorated after my surgery but has gotten much better in the past two years. My typing has also returned to about the same as it was, pre-op.
As for what we loosely term 'cognitive' issues, I think I'm close to what is normal for me, although I occasionally forget things that my wife (a decade my junior) remembers with exquisite detail. We've discussed this and, based on research, decided that we remember what is important to us, which seems to be the scientific conclusion, too. I remember my cars of the past with meticulous precision, down to the gear-shift knobs in some cases. My wife recalls the color, size and fabric of the drapes we hung in an apartment we lived in 30 years ago. Neither one of us can remember things that aren't meaningful to us. My wife recalls a humorous incident from 1975 that I completely forgot. I can still recall things from the same period in our lives that she has seemingly erased from her memory. Go figure. Still, I don't attribute much of this memory 'loss' to my desiccated-and dying AN.
I feel that I would be remiss not to add the caveat that at age 65, I may have to allow for some 'natural' degeneration in my cognitive functions. However, I believe that is a very minor issue. I use my noggin every day and while I may have slowed down just a bit, I've hardly begun to calcify. Well, not yet, anyway. :)
Jim
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"I've hardly begun to calcify. Well, not yet, anyway. "
I love that, Jim!!! I think my brain has! I use it every day, but some days it doesn't cooperate as well as others! You are an inspiration.
Brenda
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Hi Phyl,
First things first, yeah the Red Sox are in the playoffs,
Now to be serious, yes I thought it was only me, but I tire more easily, my hand writing is worse and I even drop things at times. My mind too seems to be effected, sometimes I have trouble with word finding. Anyone else having this problem???? I have not had any treatment yet tooooo.
:)LisaP
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Lisa~
When I went to the Dr. and then to the testing center at Baylor, EVERYBODY asked me if I had been dropping things. I had, but I just hadn't really thought about it much - I have been a klutz my whole life. The main thing that I dropped was my pen when I would be correcting papers. However, I always sat at the little 1st grade table so I didn't have far to pick it up!! ;) Apparently, dropping stuff is a big sign!
K
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Hi LisaP,
I haven't had my GK yet (next week), but I have a hard time with word finding. I am not sure if mine is related to the AN or not. My doctor says it might have to do with the anticonvulsants I take. Sometimes I think I can't find my words because of anxiety also--or at least it seems to get worse when I am anxious. Sometimes I will be talking to someone, and I feel like I am not making sense. I usually tell the person, "Oh, I'm not making sense today.", but then I get a response back from the person most of the time saying, "Oh, you make sense." Don't know if they are lying or maybe it's not as bad as I think it is. Weird. Sometimes I find myself asking the person, "Can you help me find the right word? It's not coming to me for some reason." We usually figure it out together. Just have to go on and not dwell on it, but it is frustrating.
Nancy
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After my surgery I had difficulty with many things. Handwriting was one of them as well as my brain going too fast for my hand. My memory was also affected. My husband stays annoyed with me because I can not remember anything. I had trouble with addition and subtraction. The check book was a mess. The kids need help with their homework, well don't ask Mom. I can not remember many events and people that I have known all my life are now strangers that I don't know what to say to. I run into people that say hello and I try to get away as quickly as I can. I think to my self, was this a friend, some one I liked or disliked????? I find it very stressful, then there are the ones that want to help you remember. Well, like that is going to happen. It is not like you want to have the conversation I had a brain tumor, I had brain surgery and I have no memory of you. I feel like I have been put into someone elses body and picked up where they left off. My balance nerve was also removed so I have balance issues as well. I lost all of my hearing on one side so I don't hear half of what anybody says anyway but maybe thats a blessing. When I go into the grocery store or the mall everything sounds like wa wa wa wa. When I see people that know me it is like a stranger saying wa wa wa wa. I just want to get away.
Linda Rene
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Speaking of calcifiaction...
I go 90 miles an hour while I can and crash occasionally ... I am almost manic in my effort to remain
active and doing something...
there are days I should stay home and do house work or just read or watch a movie , but will go to the
library and play with their high speed computer or go to school and run stuff off for teachers or hang
around the playground so teachers can stay in and get a break from their class at recess or I go wander
around Walmart or our little town square ... I have to see and engage human contact where I used to
be happy to sit at home if I had nothing pressing
I have fear that if I don't keep busy I my brain will turn to mush or harden . :o so I go go go til I can't...
headaches bring me to a halt at times ... but as long as I can go I do...
I have logged 16 hours volunteer time at school this week and 4 hours on the clock...we are gearing up for
our Fall Festival and I have been decorating ,collecting donations , printing door prize tickets whatever ...
next week is book fair and I am working 4 days and get paid in books ...by the time we are done I will have
earned around $100 worth of book...my husband says he could give me $100 to stay home next week and rest...
he doesn't get the HAVE TO thing at all... but I have to keep going ...use it or lose it ... but at the
same time I think my schedule of school volunteer and paid time , Cub Scouts and Girl Scout and 4-H is doing
me as much harm as good ...
Does anyone else run into this ???
I am foggy but fear I will get totally socked in if I don't keep both my mind and body in motion
Tired , Foggy headed and busy in Tennessee
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Soundy,
I know exactly where you are coming from on keeping going so you won't lose it - but it doesn't have anything to do with my AN. It's about my husband. He had both hips replaced in 2003, when he was 39. The second surgery was very successful, but his first surgery left him in constant pain. He has been on disability since the first surgery. He pushes himself every day to stay on his feet and be active, despite the pain. He is afraid that if he does not do this, he will end up in a wheel chair. I hate that he has to deal with this, but most of us have something to deal with.
My husband also has something else in common with a lot of ANers. He was misdiagnosed for 6 months, and went though heck because of it. After he had been sick for 5 months, one doctor, with a laugh, said that there was nothing wrong with him and he could go back to work. We went to Emory in Atlanta a few days after that and in five minutes they diagnosed him correctly with avascular necrosis (death of bone tissue due to a lack of blood supply, which destroyed his hip joints). THe has not worked a day since then. I can't tell you what I would like to say to the doctor who said there was nothing wrong with him.
As for you, it sounds like you may be pushing yourself a bit too much. Maybe you could cut down just a little. I admire you for keeping so busy despite the hardships. My prayers will be with you.
Grace
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Hi,
I have been on a long vacation and returned to my friends here as well as new people. I feel I am really back home! I was thrilled to see the category added of Cognitive/Emotional issues. I haven't even finished and already have found so many with similar issues. I am posting here first because of the Handwriting comment.
Since I started being symptomatic pre diagnosis until now (4 months post CK) I have had the typical doctor acknowledged issues - hearing loss, word recognition almost a total loss, balance issues and 24/7 very annoying and loud tinnitus. I had asked about my other issues that also started occuring at the same time and no doctors seemed to see a connection. I now think if so many others are experiencing this, surely the doctors will soon understand these things are also an issue.
My biggest non-traditional complaint is lack of control of my hands they are shaky and uncoordinated. It is worse post treatment. Anyway, I was a professional artist. I taught workshops and was also teaching art. I did portraits, which requires an exacting hand. I have a studio in our home that is now used as a junk room. This is the biggest loss of my life. This is a reason I sometimes feel quite down. My core being is an artist. I still see things as an artist, I just no longer can interpret them for others to see.
I drop things. I cannot screw on any lid. I have issues with memory and before it was good. I could remember any phone number after hearing it once or twice. I sometimes can't even remember our own now. My friends, pre diagnosis, lovingly teased me about my increasing clutziness. It is worse now but at least we know why.
Thank you for being here all.
Thank you Phyl for making this thread happen!
Hugs,
Mary 8)
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Hi Mary,
Your comment about losing your ability to do art as the biggest loss of your life is really significant. When I was more befuddled by my AN, in the months before and after treatment, I worried that I might not regain the concentration needed to be a good computer programmer. I could not imagine what I would do instead. Fortunately I am now back at it, and still able to do a good job, even though I think I work in a different pattern now.
Surely there is some activity that can still tap into your artistic nature. Have you ever done photography, for instance? Even though you may have lost the exacting hand for painting portraits, you haven't lost your sense of composition, texture, tone, etc. You still have an artist in you; maybe you can find a new medium.
Of course I hope that the dizziness improves, but I also hope that you find a new path forward that becomes satisfying to you again.
Steve
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Hi Steve!
Thank you sooooo much again for your insightful words. I have been taking pictures and then trying to do something with them. It does help and I am trying to find the satisfaction from a new medium. I have photoshop so I can do some crzy things with them. I always enjoyed all mediums, I just didn't enjoy the photography as much. I used to say I would always enjoy art - even if I lost my vision I could because I could do sculpting. I hadn't thought of losing my hands!
I saw an article somewhere that someone who was a pro banjo player, had hand tremors that stopped his work, so he had some brain surgery to fix it. Oh my, therer we are again with those words.
Anyway, I have tons of photos from our trip to play with and have done some things with them. I may have to break down and take classes :D!
Take care, Steve! The family says "hi!"!
Mary 8)
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Mary,
I do understand your loss. I am going through a similar emotional low as a piano teacher and
part of a piano quartet. I recently gave up being part of the quartet that I have performed with for the past 15 years which was very emotional for all of us! I also am having problems with being able to play the piano as well as teach as my tinnitus is so loud, the piano sounds like noise to me. Music has always been a part of my life and is my passion. I am sorry of your loss as an artist. I hope new doors open for the both of us soon!
I am to have my next MRI in January - I am going to Barrows in Phoenix!
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Pauline,
I cried when I read your post. I am so sad for you!!!! I love music but only "played" the radio. ;) So much of it is noise for me, too, because of distortion, so I can only imagine how much of a loss it would be to a musician. I am sending you a huge understanding hug. I hope we both can find reasonable facsimiles. I decided I need to go through the stages of grief, perhaps, so I can get to the point of acceptance. Then maybe my heart can be open to new outlets. Does that make ANY sense??? I have many things in life (like most people my age) that have been devastating. This truly is my worst loss. I would never expected that until the true realization hit that I can't do what I did.
A big understanding hug is being sent your way.
Mary 8)
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Mary ... I used to do water colors but now make messes ... I do arts and crafts with my scouts and teach them
some of what I did and we make up stuff as we go along ... right now my daughters are into an odd
medium... tissue paper and modge podge...
last year my oldest did a farm poster for a contest Farm Bureau Insurance puts on titled Where Do wWe Get Our Food?
it is a contest open to all fourth grade students in the state ...
her poster was made of poster board that she had "painted" with tissue and then drew shapes on the back of
poster board and cut out and stuck to a base of poster board... she won locally and represented our county at state
and out of a field of 93 won third ...Parts were water colored and parts tissue painted
Hannah's Poster
(http://i136.photobucket.com/albums/q189/brandy6215/FarmPoster013fff.jpg)
Close up of her vegetable patch
(http://i136.photobucket.com/albums/q189/brandy6215/FarmPoster017fff.jpg)
The youngest did a lions face in 2006 for alternative painting medium at county fair and won first with it ... a canvas ,
tissue paper and modge podge ... this year she did a frog ...more advanced but same materials ... and another first
place ribbon for her..she is the same one did my avatar Headache drawing
Sarah and Dandy Lion ...
(http://i136.photobucket.com/albums/q189/brandy6215/TalentShow077fff-1.jpg)
getting my kids doing something with their hands to express themselves in a visual way to
others almost makes up for the fact I can no longer make what I see in my head show up to others..
At a class I took many years ago the lady teaching gave us a word to remember...MARF ... stands for
Maintain Absolute Rigid F lexabilty ... as I go through my days and find things I can no longer
do , I try (key word try) to remember those four letters and to find new outlets for what is in my head and used
to come out through my hands but no longer does...
You may find a new medium... or work with a group of kids ,elderly( a local nursing home has people come in and
work with patients doing simple art projects) or just for yourself ... I do take alot of pictures ...some are even pretty
good and have won in local contests ... I miss the old me and what I did but am finding new ways to go on
heres hoping we all find new ways to express things we have lost on our AN journey
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Hi Soundy,
I just sent a post directed to you on the other thread. I have goosebumps - when I came to this thread you had PRE answered some of the questions I had on the post i JUST finished writing.
Your kids are TALENTED!!!! I am so happy they are getting the artistic nurturing that will help them grow. WOW! GREAT work, did I mention that?? :D They have a talent they can pursue and enjoy. Others will enjoy it also. I particularily enjoyed seeing the close=up of the fruit. How did they start with this medium?
Here are some of my paintings. Most are realistic, but I loved doing abstractions, also. The photos are not terrific but you can get an idea of what I loved to do.
Mary
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/IntheTwinkleofanEye.jpg)
In the Twinkling of an Eye
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/VenetianJailbird.jpg)
Venetian Jailbird
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/Almost15.jpg)
Almost 15
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/DontLookBack.jpg)
Don't Look Back
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/Fruitbowl.jpg)
Portrait of a Fruitbowl
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/WindowsandRooftops.jpg)
Windows and Rooftop[s
(http://i364.photobucket.com/albums/oo89/MaryBKAZ/StudioPaintings.jpg)
Part of my studio walls
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OMG!Those pics are great.You are awsume.I love the people paintings i used to draw alot & my favorite was to draw people.
Thanks for sharing.
Cindy
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Mary,
Forgive me for not posting sooner. Your paintings are gorgeous. Such talent. Our Capt Deb is also an artist and Lorenzo is an artist with a camera. I'm lucky if a can draw a straight line or take a picture that is in focus, before and AFTER AN. Mind you I can cook up a storm when need be!
Truly beautiful!!! I'm totaling in awe.
Anne Marie
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Your kids are TALENTED!!!! I am so happy they are getting the artistic nurturing that will help them grow. WOW! GREAT work, did I mention that?? :D They have a talent they can pursue and enjoy. Others will enjoy it also. I particularily enjoyed seeing the close=up of the fruit. How did they start with this medium?
I was making some piñatas for someone and had been using tissue and modge podge... I was cutting fringe from
tissue and sticking uncut edge to base to make the lion piñata fuzzy looking ... somehow the girls started coloring
with the fallen tissue scraps for lack of better words ... at first they just stuck bits to a piece of paper and later
it was a focused end result the were looking for ... they love modge podge... I keep trying to get people to
just give them modge podge and tissue for Christmas ,birthdays etc etc but no one listens ...
Your work is great ... I really like the play of light coming through the blinds on the boy in the second one
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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 arts� 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 “quieter� learning /teaching environment. After years of being a creative person, who was often “free spirited�, 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 ;D 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 Birthday� … 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.
“Where are my keys?�
“Where are my glasses?�
“Where did I put that important piece of paper?�
“What on earth did I come downstairs for?�
(Sound familiar?) :-\
I knew I had some “issues� 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… :D 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 books� aisles. Get a couple of workbooks on handwriting… and just practice again… you just might be able to “retrain the brain�… 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
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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
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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 ... >:(
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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 8)
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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
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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
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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
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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
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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 ::)
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WOW :o 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
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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
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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 ;D
Jan
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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
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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?
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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.