MS SoftServe-The origins.

Back in 2004 I was pursuing a Master’s Degree in instructional design. I was trying to come up with concept to center my project around. An educational need to fill. It was an organic process as I explored the things I try to get information about…the things I need to learn. I took a week to consider it. I remember it clearly. It was my first semester in the program and I was taking The Cognitive Science of Learning. It was a bit intimidating– very academically rigorous.

The first assignment was the design document – this concept for learning. Of course I need to learn about MS. I can come up with a way to learn about MS on the internet. I know that there are other sites that tell about the disease…but I wanted to create one that was different. So…I followed the guidelines and came up with something that I thought was pretty clever. A place for information about MS that allowed the user to make certain decisions about what the site looked like and what type of information they received.

Imagine my surprise when I got it back with and “F” on it. You have got to be kidding me. An F! Maybe I was in the wrong program. Maybe I wasn’t cut out for this rigor. It quickly became clear that an F is what you are given if you don’t quite understand the assignment.

It was my first lesson in the difference between giving and getting information vs. teaching and learning. I’m told that and “F” is often given to inspire improvement. I guess if that is the case I should be thankful. This “f” inspired me to find a most meaningful project. One that I will dedicate my life to seeing produced.

(more to follow)

Mind Blowing

I ‘m not sure how it is that I’ve set up this blog to discuss my life of learning with Multiple Sclerosis, yet I haven’t once mentioned the web site I’m developing for that very purpose. With that I have set up a new category….MS SoftServe. To read up on the status of this site just check of the category on the right. There is much to report!

Stick to it

I’ve been using the aforementioned vertical stabilizing instrument for 1.5 weeks now. Like my husband suggested, It is the initial phase of a social experiment; one that I am also a test subject of. This technique might be inappropriate for anything to be considered statistically significant…but for me it removed the overarching fear that I’m progressing. The data it did provide was unexpected- on many levels.

 

 

Phase 1: The issue of how to make this stick work for me.
Stripping away all of the emotional implications, I had to consider how I was going to schlep this additional item during my concrete jungle expedition. I imagined it in four stages. The first was walking out of my house and across the street to the train station. There were many possible places that could now could be viewed as obstacles in the first jaunt alone. I had to get down my stairs, and cross the street and then get up the stairs to the platform. I did this pretty effortlessly most days. Of course when my balance became compromised it changed what is the default normal. When this episode began it was the snowy ice period of January just to kick things up a notch.

 

I had seen my new physical therapist who trained me on how to use the stick…as if one foot/leg is weaker than the other. It wasn’t the most intuitive process…and I quickly realized that it wasn’t compensating for my unpredictable foot-drop. What I was doing was adding a limb to confirm my connection with the earth… a tripod of balance. Once I figured this out, I became be less rigid in the process. I began to move the cane back and forth between hands as I needed it- not forcing myself into a regimen of usage that felt more military than assistive.

After a few days… I became emotionally comfortable carrying this thing around. When I was seated, or it was in the way… I magically folded it up and stuck it in my back pack. When the time is appropriate I would pull it out and it would snap in to place. Not unlike those collapsible magic wands that droop unless you hold them just right.

 

So with that check mark completed I was able to take notice of how people respond to me. Right off the bat there were some exceptions made on my behalf. Those New Yorkers aren’t had cold hearted as the movies would like to portray. On my first subway ride with stick in hand a young woman offered me her seat. Cool. When I walked up the subway stairs on the first day… hanging on the banister as usual—cane present but not used… I could feel the explanation of why I was talking so long…falling off of my back pack. This is very cool. For the first time in almost 20 years I had a signal to the world that I have something to contend with that goes beyond a first glance.

This is very interesting.

more later…

To stick or not to stick (Follow up to the entry below)

Warning: This entry may not be suitable for anyone with MS who doesn’t want to learn about symptoms that may never affect them~ Proceed Accordingly!

Stay on target.

The last part if this entry was inadvertently deleted on my palm pilot during the commute. This had served as the subtle hand on my shoulder to get back to the point.

To Walking Stick or not To Walking Stick

So with this recent episode the steroid results were slow to come. During that time, I had more time to think than I’m accustomed to. Dealing with the past month of falling, stumbling and feeling at odds with gravity, I started looking at my place in the world on a physical level. I need better stability. This was not easy for me to recognize, or acknowledge. I always felt that my doctor would recommend it if it was necessary. Apparently that is not always true, although it was a good defense mechanism if anyone from my family questioned me about it.

I have found as the primary member of my treatment team, that the physician waits for the expressed need. This of course is only true for the more subtle symptoms of this disease.

Sometimes it’s difficult for me to have perspective to assess when I’m living it. When one is dealing with the emotions of new symptoms and just getting through everyday it is hard to see the big picture. So when Keith mentioned it – the consideration was brought to the top of my to do list. Because he always provides the stabilizing arm wherever we go it made sense to take his observation seriously. It was a nice affectionate metaphor that was as natural in our marriage as how we prepare each others hot beverages. (tea for him, no caffeine lots of agave- coffee for me skim milk 1 tsp agave.)

The problem was more evident when I commute in to NYC without him. I easily blend into the sea of people leaving Penn Station like a scene from Exodus. I would walk as quickly as possible hoping to get a cardio workout on the fly. Slowing when I hit the stairs to the grumble of those behind me. In the last year or two I would really push myself to move as quickly as possible. I avoided this for years, not wanting to be in touch with the line of limitation. Unfortunately this extra push backfired when I began to lose my balance and experience foot-drop. So when I fell, I did so with much greater force. My hands may break the fall, but my face ran a close second. Quite a spectacle at Penn Station!

Cut to the Chase

So the need for vertical accompaniment is established. Now I need to get the mindset. For this, my husband is a genius. He suggested that I treat the whole change as a social experiment. Not unlike Gloria Steinem, feminist writer as a playboy bunny or fictionally as Gregory Peck in A Gentleman’s Agreement a reporter pretending to be Jewish- I could take on the real life experience of anonymous commuter who has a cane. How would this change my commute? How would it affect my reality with this supportive item?

Tune in next time to find out. (Thanks for reading!)

To cane or not to cane: see warning!

Warning: This entry may not be suitable for anyone with MS who doesn’t want to learn about symptoms that may never affect them~ Proceed Accordingly!

On December 12th I found myself in Dr. Miller’s office explaining the more pronounced symptoms that I had been experiencing over the month prior. Nothing totally out of the ordinary, just a bit more present that usual. I had dizziness, lack of balance and foot drop. (the involuntary drop of a foot when lifting it while walking. This invariably resulted in a more intimate relationship with the sidewalk, if you know what I mean.)

All of these symptoms made periodic appearances in my day to day, which made it difficult to determine when I needed to see my doctor. It was when I lost balance standing still that I decided this was not your normal come-and-go symptom. I was in front of my washing machine assessing its contents when I suddenly ended up on the floor. Now that was a clear signal!

I have a tendency to downplay my response to my ever-evolving symptoms – for my own preservation as well as for my family’s sake. Optimism and the ability to deal with a challenge is part of my fiber. While serving me well in most scenarios it can sometimes work against me.

One area is that my family assumes that I’m handling it well and don’t need any assistance.

The other is that I’m caught completely of guard when my Dr. recommends advanced treatment, as was the case in this situation- “Five days on a steroid drip.”

No problem. Been there, done that. Two and a half years ago I had a limp that was more dramatic than your average foot drag and the steroids whipped me back in to shape in no time. Hell, I even went to work after a morning hook up. This could even be fun. Added energy, higher metabolism, more time to work on my blog, my website, my business plan. I could definitely deal with this!

So, like an overly confident weather forecaster, I planned my month. And, not unlike the weather… it didn’t turn out like I expected. You would think that as a twenty year veteran with this unpredictable disease I would have learned to expect the unexpected.

I guess that for survival purposes it is equally important to have a sense of control. The need to predict is an important part of that…. more on this later.