One and a Half Years

Progress continues, with it's up's and down's. My mind is much more functional, and my brain is handling all the input much better. I'm off one of the antiseizure drugs, Dilantin. The migraines heve dropped off considerably over the past 6 weeks, but come back if I forget to take my Depakote.

I was working on a vocational rehabilitation program through the Idaho Commission for the Blind, but got discouraged and dropped out in September. There are holes in my memory, and certain kinds of information leak out. No matter how many times I go over them and practice them, I just can't remember things like Windows shortcut keys. The bouts of increased cerebrospinal fluid (CSF) pressure or brain swelling make it very hard to keep any kind of schedule. There would be days when I would be able to stay awake for only 4 hours total throughout the entire day.

The Commission gave me a white cane with some basic training, to use in getting around in the dark. They said I was essentially trapped in my apartment at night, and they were right. It has been great to be able to get out and walk down the sidewalk at night to a nearby market, or go to my voting precinct after dark. I don't do it very much, but just knowing I have hte freedom is great. The cane also helps me in crowds and settings where I can't process the environment quickly enough. People give you a little more leeway, and aren't bothered if you bump into them. They can be a little over helpful at times, though.

I've learned several things that have helped me develop strategies for further improvement.

1. Recent studies indicate the brain can grow new nerve cells, and these cells can also migrate to where they are needed.
   • I try to keep my brain challenged with new experiences and activities to encourage new cell growth and migration.
   • I keep working on some crossword puzzles, per expert orders, to encourage brain cells to form new branches for memory storage. I think the puzzples help with reasoning and language processing as well.
   • I read books on the brain, and try to develop exercises and activities based on what I've studied. The exercises may not always work, but sometimes help me remember what I've read.

2. Existing nerve cells can migrate or extend axons to other areas, allowing them to take over the function of lost or damaged cells.
   • Evaluation at the Commission for the Blind Low Vision Clinic revealed that I could read 2 lines further down the chart when reading backwards. I was given charts with exercises to use to help my brain continue to learn as it rewired itself for vision functions.
   • Evaluation also showed that I can both see and read much better when looking through certain colored filters. This was another sign to the doctor that my brain was rewiring itself, and helped him give suggestions for exercises.
   • I try to expose my vision systems to a wide range of experiences several times a week. I spent much of one week recently being driven around at night. It was a very difficult experience, tiring, confusing, and leading to headaches and a need for extra sleep. But I regained a little night vision.
   • I am making my trips to the store at dusk, to encourage the continued development of night vision.
   • The studies suggest that new or existing cells will never be able to perform functions as well as the old cells, but can at least give funcitonal use in areas experiencing loss.

3. Some exercises that may be helping increase my visual skills and field:
   • Stand in the center of a room I know well, staring staight ahead.
   • Audibly an object that is in one of my blind area, then describe it's size, shape, and color.
   • Look at it to verify the description.
   • Turn to the right a little and repeat with another object. Continue until I've named object all the way around the room. Then do the same again turning to the left.
   • Quit avoiding things that left me tired or confused.

   • Drive with different kinds of sun shades.

   • Try to get at least a half hour of sunlight on my face in fall and winter (to prevent a tendency to SAD and sleep disorders, probably due to not enough optic input to the pineal and other glands in the brain).

   • Keep my eyes moving around the visual field, to prevent objects from fading out.

   • Get enough rest. Some nights that is 8 hours. Sometimes that means 16 or more hours. Whatever it takes to wake up rested. I've found it best to not push it too much the day after a long night. Long nights tend to be followed by some kind of improvement, and my body needs some time to adjust.

Major improvements over the past 6 months:

1. Improved speed, both in thinking and processing input.
2. Can handle more input data (called qualia) at once.
3. Can read much faster and more accuartely in more conditions.
4. Alien hand syndrom is gone and left hand is nearly up to speed with right.
5. Can deal with the Christmas crowd in the store, but it's still not easy.
6. Discovered, after several colds, that over the counter decongestants seem to reduce the CSF pressure and the brain swelling. This has helped me avoid spinal taps or shunt surgery.
7. All areas of vision processing have improved substantially.
8. Memory has improved substantially in some areas.
9. I got my spare room rented, and am quite happy with the young man who is in it now. Renting that room had been a stomach turning experience at times.
10. I'm generally upbeat and in a good mood, enjoying life no matter what it is like.

Problems that still exist:

1. Brain swelling still causes bad days, bad vision, mental fogginess, drowsiness, and other bad things.
2. Visual field still has restrictions and fuzzy areas.
3. Certain kinds or bits of information cannot be stored or retrieved from memory.
4. Visual memory and recognition are still poor, I often don't recognize people I know well and have just seen minutes ago. I see them, I just don't associate what I see with what I saw when I was last with them. It's a visual association as well as a memory problem.
5. When I'm stressed or flustered, I loose my ability to put things into words. For some reason this tends to happen the most while in a doctor's office.
6. I'm still having trouble with local doctors. They don't get the concept of the brain swelling, and want to keep passing me off from one specialist to another. One doctor told me directly, "No one here wants to see you. They don't know enough about your condition." The last time I was having major swelling symptoms, including sleeping up to 20 hours a day, the neurologist told me to go to a sleep specialist. The sleep specialist thinks I should see a neurologist. It looks like I will have to continue to make trips to Salt Lake City for medical care, when I can afford the trips. I consider this to be the greatest problem I'm facing right now.
7. I make stupid mistakes, miss associations, fail to put 2 and 2 together, and dozens of other little things that tell me I've lost some intelligence and reasoning abilities. I hope these will come back, but for now it seems it's only my awareness of them (after the fact) that is returning.
8. I still tire way to easily.
9. I still haven't figured out what kind of substantial work I can do as a half blind, half deaf, awkward, disabled man of 46. I do need to start working at least part time soon. I may end up busing tables at a fast food restaraunt. That's something to look forward to. But I will do what I must. And won't grumble. Not too much.

Thanks for checking in, reading all my ramblings, and sticking with me through the last year and a half. The amount of love and support I've gotten from total strangers is amazing. Please feel free to contact me if you need more information on AVM's, or where to learn more about how the brain operates and heals itself.

Recommended resource: "Users Guide to the Bran" by John J. Ratey, M.D. A book of medium level complexity, and a lot of good stories.