HELP! Disabilities from brain CA

baxterbuddy · New User Joined: 21 Jun 2009 Posts: 2

Hi!!! I was diagnosed with Oligodendroglioma Grade 2 a few years ago at age 32. I have had surgery with little removal of the tumor in my L temporal region. I am very forgetful and I am not able to bring my thoughts into action due to the barrier the tumor and scar tissue present. My emotions are also enhanced. I followed up with Temodar for 12 months and was blessed enough to receive some rehab. Unfortunately, with this type of disability, you need someone at home to help you work with the ideas to see any improvement. NOT going to happen with my husband. I'm not very proud of the fact however, he has never even spent the time to look at the papers let alone help me with them. I have come up with a few goofy ideas i thought I'd throw out there...

1) I cut up a plastic covered magnetic 4 x 6 picture frame and placed the different monthly payments (car, gas, power) in each one. I plan to post them on my magnetic dry erase board and move them to the "paid" side after I have paid them on line or sent a check. This is new so I'm not sure if I am going to be able to make it work.

2) I have been telling myself for months to make myself a simple bathroom list, you know, one that reminds me to go through the list to make sure I don't need to purchase the 6th deodorant in town because I forget to keep the stink to myself! Yep, I have also forget to brush my teeth. Yikes!!!!

3) I have bought a few plastic self stick holders for my car dash for lists the be placed on. I hope this works for someone else because I forget to bring the darn list out there!!!!

Yeah, I'm a fighter and I will find a way to get through life one way or another. I'd really LOVE it if we could find a way to share our ideas. If any of you have ideas, goofy, simple or out there, I'd be extremely grateful if you would kindly share them.

God Belss, Valerie.

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

It may help for you to be aware of the plasticity of mind, called neuroplasticity. What this means is that the more effort that you put in the more these functions will be taken over by other proximal area of the brain. You may not get back to full function, but as jogging can get you fit so mental exercizes can get your brain back on track.

My wife brought me a nintendo with the brain training software. I buy monthly puzzle books, they include sudoku and crosswords, to help stimulate my brain. After 5 months I was able to return to work and I am still seeing improvements 18 months later.

Some supplements can help. I take phosphatidylserine and others that support brain function.

You have a positive frame of mind. I commend you on remaining positive when others are not being supportive.

All the best!

feather · New User Joined: 10 Jun 2009 Posts: 4 Location: australia

BaxterBuddy,

After removal of my astrocytoma I also suffered (and continue to suffer) severe memory problems. I set up *systems* to help my life operate more smoothly.
I keep a note book. When I pay a bill I immediately write down the date I paid and how much.I can't leave it *til I get home*-by then it will have vanished from my awareness.
I keep a series of shopping bags ready_ in one *what goes to the Dr with me*-in there I keep everything related to my current medical situation.
Another one is set up for *taking the dog for a walk*-the poo-scraper, leads, drink bowl etc.
Another one is set up for going up the street to buy things. I keep the shopping list in there, adding to it as I notice things needing to be replaced.

I do crosswords to help my concentration. Also playing scrabble helps-if you can find a partner to play who is patient enough!
I trust nothing to memory.I write everything down. I also stick to solid routines-get up at same time, go through set routines, wash,clean teeth feed dog etc.This routine stuff really reinforces patterns that retrain the brain to remember.If I didnt do this, I'd forget to eat sometimes. (That does happen, if I get distracted by a visitor, phone call or something, so I tick things off the list as I have done them)

Meds were a nightmare: (*Did I take my epilim this morning???*) so I cross off a list as I take a medication, just to be sure.

Over time, my memory is improving but sometimes important things still fall through the cracks. I place sticky notes everywhere if I have to remember something new to the schedule.

The dog got fat because I kept forgetting I had fed her and fed her again!!! Very Happy

I have been on my way to the Dr and forgotten I was going there, only to find myself wandering around the supermarket asking myself *why am I here?*. Now I ask the Dr to send me a reminder call half an hour before my appointment!

Its frustrating though.The *where did I put the....*almost has driven me crazy so I now have the neatest most organised filing systems you can imagine. It helps.

I dont even TRY to tell jokes anymore-theres no chance of me remembering the punchline.And what was the name of that movie I saw last night????And who was that guy in it???? Very Happy

Hopeless.Thank heavens for *spellcheck* too.

For me things have improved. The brain does try to forge new neural pathways. its all about adapting to the changes.
When I meet new people I discreetly record their name in my notepad so if I speak to them later on I can check their name first-no hope of remembering it straight up, but in the light of being alive and feeling the sun on my face, I feel these are fairly small issues, relatively.
Love,
Feather

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