Patients Like Me- Controlled Learning?

patientslikeme.com

Back at its inception patientslikeme.com invited me to participate in its innovative startup for individuals with Multiple Sclerosis to compare notes and record their disease course. I registered and planned to get back to detailing my MS timeline when I “had a chance”. It kept getting pushed to the bottom of my priority list until the New York Times ran this article in their magazine section. It’s amazing the power of people sharing information about their disease experience and how that can influence and drive the big pharma. After reading the article I can’t help but to wonder if there is opportunity for collaboration with this group, once MS SoftServe is up and running. I’m gather my list for these outreach letter once the 501c3 is in tact!

I’ve used that opportunity to research (throw in dramatic sound track to illustrate fear) this latest symptom of mine that won’t go away. That being dizziness. (more soundtrack if that suits you) I’m hoping to learn what types of drugs other people are taking and what their experience is. I didn’t learn what I set out to, although I didn’t learn anything that set me back on my emotional path either. I will continue to visit it and see what comes of it.

more later~

Not to put too fine a point on it…say I’m the only bee in your bonnet.

Nothing like They Might Be Giants to refer to that which is unclarifiable. This self assessment has been such a struggle for me. I like it to be a bit more concise. A bug bit me. There is the spot. It itches. I’m limping because I have MS and sometimes when I walk too far that happens. I’m dizzy. Can’t tell you exactly when or why or if I’m better. I’m just dizzy. Sometimes more than others. Every morning I seem to be on a reset as I wake up very dizzy. Although at some point today I was able to look up with out feeling like I wanted to topple. So thats an improvement.

I’m currently using my freetime (on the train) to asses the instructional design of the proposed
symposium for the NYC chapter of the MS Society. It’s been an incredible process. Just putting my mind in the instructional designer role is such a creative outlet. While i’m thinking of how to add to this existing project, a million other ideas are coming to me about mssoftserve. The creative engine is tremendous. By merely engaging… it begets more and more. I hope there will come a time that I can dedicate all of my creative energy to these learning sites.

a dizzy affair

I have been trying to write an entry for over a week now. (and here is my traditional disclaimer– If you would rather not learn about symptoms that you may never experience…stop here.) I literally have seven drafts written that I haven’t published. This vertiginous experience has been trying…to say the least. I suppose that any of the sensory MS symptoms affect us on a different level, an additional level. How we sense the world around us invariably inpacts how we feel emotionally about the world and our place in it. Maybe this is why I can’t seem to find to words to ground me. I keep searching for coping mechanisms and none seem to work. I guess I will just have to ride this storm out.

Vestibular MS- “How are you?”

I haven’t posted the warning to say that “if you aren’t interested in reading about symptoms you may never experience” in some time. So let me do that now. Consider yourself well advised and proceed deliberately if you so desire.

I’m at day 5 of level 7 dizziness.. and I continue to struggle with how to establish my coping mechanism. Something about giving it a numeric value helps a bit. It’s so ethereal and that makes it difficult to convey…assigning numbers helps to ground it all- if you will. Not unlike Hurricanes..those whirling winds that can only be effectively communicated to the massess by their 1-5 categories. Any sense of control will do. I even believe that since I began the process this internal storm has been downgraded to a number 6 down from 7.

This all began back in December last year and after the steroid infusion I was patiently waiting for relief that was slow to come. But it did, sort of. Once this whole dizziness thing began it was hard to determine the progress… or progression. Partly because the experience with it was so variable.

One of the challenges of invisible MS is how to respond to the daily queries of concerned individuals. “How are you.” I”m fine. Really? No, not really… but how I define fine changes on a daily basis. And what is the point of saying “still dizzy” ? What if dizzy is my new norm?

MS SoftServe- status

The web development is moving along. The video describing the need for MS SoftServe is edited and we are fine-tuning it. I’m hoping that my passion for this website will be evident in the video. I am by no means a professional spokes person, but my hope is that by sincerely conveying the real need for this customizable learning resource for everyone with MS (or any other chronic illness for that matter!) will be recognized. We will post it and plan for the rest of the staging ground to come together in a reasonable time-frame. (The eternal optimist I am!)

Our next order of business to create survey so that we can learn first hand what people with MS need/want to learn about. Feedback is gold when it comes to our mission. In more ways than one. With your input we will not only establish what this community needs- so that the site can be built to satisfy this need- but we will also be able to show the sponsors how important it is that we have a customizable site to learn from.

Dizzy Defined

Here is the Roget’s entry for variations on a dizzy

  Roget’s New Millennium™ ThesaurusCite This SourceShare This
Main Entry: dizzy
Part of Speech: adjective
Definition: Having a sensation of whirling or falling.
Synonyms: giddy, lightheaded, reeling, vertiginous, woozy
Source: Roget’s II: The New Thesaurus, Third Edition
by the Editors of the American Heritage® Dictionary.
Copyright © 2003, 1995 by Houghton Mifflin Harcourt Publishing Company.
Published by Houghton Mifflin Harcourt Publishing Company. All rights reserve

I love the words… for me they are onomatopoeia. Don’t the words themselves sound like what they are describing? giiiiidyyyyy, reeeeeeling, wooooooozy. Not so much with vertiginous but actually saying it makes one feel a bit dizzy! Or maybe it is just me. I am seeing the world through a dizzy lens at the moment.

I woke up this morning and found myself feeling, let’s say- vertiginous. The kind of dizziness that every time you move the world rotation is kicking the movement up an extra notch. Not ideal for the NYC commuter experience that usually starts my day.

I spent a good twenty minutes sitting there trying to evaluate my level of dizziness. How can I determine whether it is safe to go to work or not. I decided I need to chart this out, to make a litmus test not unlike the standard neurological exam. With points and numbers… and depending on my score… I will make the decision to work, or not to work. To commute or not to commute.

Maybe when I’m through I will find other significant uses for the test,…say to determine what to eat for lunch and other indecisive moments. Something tells me this will be very useful.

Magnetic Resonance Imaging…and other false hopes.

Back in 1988 when I had my first MRI, I experienced up close what was, at the time, high-tech. I lay in a very small tunnel housed in a large square magnet and “relaxed” for 90 minutes while I listen to the banging, clanging and other loud noises that would produce images of my brain. The films that I carried in a big yellow envelope to my newly assigned neurologist had the evidence of what was to become my new identity. Multiple Sclerosis. Stamped on my forehead before I had even determined what kind of adult I might become.

Twenty years later the technology has improved. The open air, musical soundtrack, and audio link to the technicians outside- all created an environment that was more conducive to a relaxing experience. Yet I’m not sure I see the point of what is my 7th MRI.

I was diagnosed quicker than most people I’ve met. My symptoms were classic and with the MRIs in hand- my spotty myelin made it a no-brainer (if you will). I celebrate the technology that made the discussions of psychosomatic symptoms short-lived.

But ever since that initial experience, MRIs have only served to confuse me. It was a few years ago that I was told that there may be scars that have no related symptoms and symptoms that have no related scars. (that would explain the vague mri observations of my neurologists over the years~) Okay then. What do I do with the results? If my MRI comes back with a number of new “activity” spots and I have no new symptoms should I worry? Or if I have a wealth of new symptoms that aren’t showing up on film…should I be annoyed? I’m coping with the symptom..shouldn’t there be something to show for it? What is the point of this test if nothing on it has any significance? Why do I get excited with every one that there might be a new interpretation? I keep that hope alive- Maybe they’ll find the holy grail this time!

I just recently went through an episode (see Vestibular- and other highlights of my growing vocabulary) and I anxiously awaited the results in hope that is would provide insight and then ultimately a treatment for my dizziness and impaired balance. I’m not sure why. I suppose that is the nature of my unfailing optimism. Maybe this time they will see something. But they didn’t. They answer my question as if it is the first time I’ve heard it. There is nothing we can do for this symptom. There is no new information that the MRI is providing.

ie: Add it to your list of things you can cope with.