Fighting Cell Memory Loss in Multiple Sclerosis

The following is an example of what MS can do to your memory based on my personal experience. (Most of my posts are based on my or a friend's personal experiences, unless noted otherwise. Memory loss is complex--this is one example.)

It first happened when I had been diagnosed with MS after about 10 years. I was sitting in the bath tub and I could not remember how to get out. My mind 'went blank,' and my brain was sending no clues to my body. This was a pretty scary situation since I was stuck in my tub and my van ride to work would wait for nothing. "Sorry, I was late to work. I couldn't remember how to get out of the tub."

My job with the city of Seattle was actually wonderful in regards to my crazy MS issues, and as I have covered in previous posts it is my opinion that building an "MS Relationship" with your employer is crucial to keeping your job when the going gets tough, or plain weird.  "I have to go home. I have a touch of blindness." So, had I needed to say that I was stuck in my tub, no one would have batted an eye.

The whole episode upset me very much though. Where might THIS lead? Nowhere good.

After a call-out to my partner, together we got me out, but it was not easy. She had to basically talk me through how one moves the body to get out of the bath tub. We had grab bars installed to help out the next time.

A year later I forgot how to walk. It is a feeling of your brain not speaking to your body. (Much like in the years before I was diagnosed and suddenly my brain couldn't tell my body to urinate. THAT freaked me out big time, but as early year symptoms will do, it ended quickly, but I have never forgotten that fear. THAT has not happened since, so over 22 years.)

After a doctor visit, I sat in the tall skyscraper's lobby and watched people walking. I must have sat there an hour. Then I would tape and replay in slow motion, anyone walking on TV. Over and over I would watch. Next I would sit in my scooter in front of a nearby community college and stare at the students walking. Heel, balls of feet, toes, right leg out, left leg straight, etc., etc.

I once again enlisted my NYU acting school graduate partner (plus 12 years of dance training) to coach me through the process with a cane, then two. Finally, I had to write it down thanks to her figuring it out. It is NOT as easy as you might think.  I carried that scrap of paper around with me for a good year.

Now, 22 years post diagnosis, I think my body is receiving the message from the brain, but the message to move at all has been compromised on my left leg. Add to that the onset of atrophy from lack of natural walking. But, I am pleased and optimistic that my legs have some memory of HOW to walk. I know they do because they have begun dreaming about walking. In the last 4 years, the walking dreams have begun. My brain wants me to know it remembers.

It seems in MS, memory loss can be defined in different ways. I wrote a college paper once about cell memory. My theory was that our cells do carry some memory, "cell memory." (I got an A+ and the professor asked me out on a date...hmmm, always will wonder if my paper was worthy of any A or Plus or if it was just a pick-up grade. She seemed nice though and I feel sorry for any teacher who has to  go after students to date. Pathetic.)

As MS kills some of our cells then it only goes to figure that some cell memory will die. The good news is that we now know cells can be built. Build them and memory will come. I have attempted to really become intimate with my brain since MS entered my life, my brain's life. And learning bridge, a very complex card game, was a smart move. I truly believe one must make the brain go to places it has never gone before, to build new cells. Reading is great, but I've always done that, along with writing, chess, but those are not new for my brain. Next I plan to memorize stats on our states and presidents. Then more math, algebra, trigonometry (totally untapped), so many cells to build---I mean look how little we know.

We specialize in certain activities. Those cells will die and this is true for everyone as we age. We must go where no man has gone before, oops, no, I meant where we have not gone before. Remember, that is how we initially built all of our brain cells---walking for the first time, petting a cat, speaking, laughing. 

Memory loss and MS---it can rob you of anything you once specialized in. I also forgot how to tie my shoes.