My Personal History with MS and Cognition

In my last post I shared my discovery that the current MS exacerbation was effecting not only my legs, but also some of my cognition functions.  In it I promised to use the opportunity to explore/do field research on how yoga might help with the cognition aspect. I kept that promise and I will share what I learned.  But, I think telling a bit about my previous encounters with MS-related cognition issues can provide important perspective. To keep this post from becoming even longer , I’m making this Part 1 of a 2-parter.

I was diagnosed with MS in January 2005 and that June began to have trouble with many of my executive functions (planning, problem-solving, switching tasks, verbal reasoning, working memory, etc..).  I was working in fund development, an area I’d been in for 10 years. The work was highly dependent on executive functioning skills and required the ability to juggle several projects at once. One day I found myself having trouble reconnecting with my train of thought when switching between projects.  Another day I’d read guidelines and information material from a potential funding source and discover I couldn’t translate what “We” did into language that matched what “They” were interested in.  I also began to struggle with pulling information I knew from my brain to my lips.  Then there was the day I sat down at my desk and had no idea where to start.  I was so frustrated.  Many of my drives home were made in tears.

No one had told me MS could affect my ability to think.  Back then, cognition problems weren’t on most lists of potential MS-symptoms.  I thought I was losing my mind.  I have always been labeled as “smart.”  In school I ran with the “smart kids” and always gravitated towards people with a quick wit.  Multi-tasking was second nature and the field of fund development had fit me like a glove.  Now, my gloves had holes and I had no idea why.

I developed coping skills that, for the most part, kept my struggles hidden at work.  (In writing this I’ve realized that these coping skills also kept my neurologist from seeing how bad the problems were.) I confided in the receptionist and my assistant, and will be forever grateful for their help during the summer of 2005.  Still, staying on top of things required an extraordinary amount of mental and physical energy.  I had struggled with fatigue from the start and these added challenges drained me.

When I spoke to my step-mom about what was going on, she told me that my uncle (who’d had MS and passed the year before I was diagnosed) experienced cognitive difficulties.  It was something my parents had chosen not to tell me because (1) they didn’t want to scare me, and (2) they hadn’t been sure it was MS-related.  Afterall, he lived most of his life during a time when it was thought MS couldn’t effect cognition. A viewpoint that had only begun to be called into serious question a few years before my diagnosis.  It wasn’t until reading Facing the Cognitive Challenges of Multiple Sclerosis by Jeffrey Gingold in mid 2006 that I even came across another whose experiences mirrored some of mine.

The cognitive problems began to subside by the end of summer. But other non-health circumstances arose and I resigned in October.  I tried doing some consulting work in early 2006, but cognitive problems resurfaced that spring. That’s when I put my fund development career on the shelf.

Of all the MS-related symptoms I’ve experienced, none has messed with my sense of self and identity like the cognition problems did.  During those times I didn’t feel smart.  The wit wasn’t there — well, not at the speed I was used to.  I’d been a talker, a communicator.  I’d always said that I’d rather ask someone for a $1,000 donation than plan a special event. During these “phases” my ability to get my point across was compromised. Conversations with me became a guessing game for my husband as I substituted “thingy,thing-a-ma-bob, whatcha-ma-call-it” and other expressions for words I couldn’t find in my mental dictionary.

If I wasn’t the Smart Girl, the Witty Girl….  If I couldn’t drive the freeway or read a map due to spatial relationship problems….. couldn’t read a book without constantly re-reading passages to remember what was going on…. couldn’t make quick decisions, even on something as simple as “paper or plastic”…… wasn’t able to convince people and institutions to invest in the work my organization was doing… then WHO WAS I????

I didn’t rediscover yoga until January 2006. My understanding of it as more than “just stretching” was still in the future when the cognition problems resurfaced that spring. It hadn’t yet become a sustaining practice in my life.  I hadn’t yet learned I was more than what I did to earn a living; more than my hobbies and interests; more than my brain and sarcastic wit.

The “About” section alludes to the fact that I grew up in an abusive situation. I won’t elaborate here except to say that growing up with an abusive parent, especially when there is significant mental and emotional abuse,does a number on your sense of self-worth and self-esteem.  I saw a therapist earlier in the decade and thought I had worked through all that.  But, this identity crisis brought the old wounds and doubts to the surface.

Though it didn’t seem so at the time, this was a good thing.  I went back into therapy with a different counselor — one who understood both the dynamics of abuse and the challenges of living with a chronic illness.  The question of “Who am I?” required me to look at the stories I’d been told — stories I’d believed about not being lovable and “less than.” It was during this time that my yoga practice shifted from stretching to something much more; something healing.  And because of this shift and my practice for the last seven years, I was better prepared when cognitive problems arose this past July.

Until next time (when I really will share what I learned this time around)…..

Namaste,
Deb

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6 thoughts on “My Personal History with MS and Cognition

  1. Pingback: Transformation Part 1 | Clear Reflection Yoga

  2. Pingback: MS, Cognition and Yoga: What I Learned | Clear Reflection Yoga

  3. I am proud of your courage and openess. I don’t give speeches anymore because I’m not sure the words will flow as they did so easily at one time. It seems as though I can feelmy brain trying to make a connection but the synapses are not there and the rerouting is taking such a long time.

    • Thank you. Sorry to hear that you have experienced the cognitive problems as well. I know what you mean about feeling your brain trying to make the connection and it taking forever to do it. My next post will be on how the experience of cognitive impairment was so different this time — a difference I think is strongly tied to my practice of yoga and mindfulness. Yoga and mindfulness didn’t make it heal faster, but it totally changed the way I handled it.

  4. Truly you are one of the most courageous and strong women I know. I am constantly in awe of your pure determination to work through whatever MS throws at you. How brave of you to share so that others may have hope. Keep up the good work!!

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