Category Archives: Blogroll

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It is…no, it isn’t….yes it is.

Just home from the visit with the Neuro-Ears Nose Throat expert. After a brief synopsis of my almost 20 years with MS and balance issues…emphasizing the Vertigo of 1989 and ending with the most recent bout of dizzy/off-balance/ambiguity.

I am now told that contrary to the prior consideration that yes,  it is my MS.

Okay.

Not sure why I’m always feeling that I should have known, or seen any of this enigma disease coming. It’s because I’m constantly thinking and analyzing and trying to make sense, or have control of this lot in life. I think I’m hard wired that way. As fate would have it…this completely unique, totally variable and unpredictable condition is like a CarTalk episode stagnating at Stump the Chumps.

Just when I think we (me and my treatment team) have a handle on it… we turn out to be throwing hypotheses around the room haphazardly. And that leaves me thinking…meta-thinking actually.

If only I could sit back and let it play itself out.

I’m scheduled for a test with a Dr. Dai. It’s a visual/aural test that I am told will likely leave me extremely dizzy. I was instructed not to eat 1 hour prior. Vomiting is a common side effect of the test and they apparently prefer dry heaves over content.

Since my appt with Dr. Cohen, I have been very expilary (a word my daughter made up-meaning more than very) dizzy. Now I need to figure out how to get out of the city at rush hour while experiencing said dizziness.

Looks like a job for Dr. Verter!

more later….

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Sticking to it.

My dizziness has seriously improved. Dr. Verter comes through yet again. So, I have a much better position on the earth… not completely stable…but one that is far more secure than I began 2008 with. I’m not sure how soon after I left his office that things really kicked in for me. It’s a subtle and gradual process that has left me feeling completely different..in inexplicable ways.

So I began to reconsider my trusty stick. Do I still need it? My balance is by no means perfect, but that has always been the case. So I did some tests without it. Rode the subways…slowly walked up the stairs sans stick, and I realized what I think I already knew. The stick is an important announcement and a reminder. For the prior…the world at large is the audience and for the latter the target is me.

It has been a significant help to make my invisible condition..disease…identity (what is the right word here?) present…apparent… evident. People rise to the occasion in ways that I didn’t expect. Be it a subway seat or holding an elevator… In many ways it let’s the societal cream rise to the proverbial top. There is a lot of good out there and if people are given the opportunity, they crack open the solitude of commuter stance to reveal the person behind the mask. I hadn’t realized how much power there is there. It makes me feel good about the people I’m sharing the planet with.

Then of course there is a certain level of empowerment in taking charge. I thought that by using this walking assistant I was admitting defeat. Not consciously of course, but on a deep emotional level. As if I was making a statement to the world that MS has me in some way. What happened was really quite the opposite. The stick has given me power. The power to bring out the best…and the confidence that I can walk farther and faster without kissing the sidewalk.

There is also the reminder I aforementioned. It reminds me that I’m not the same. That I do need to take special considerations. That I need to slow things down and be more concerted in my efforts. And although I only use the stick commuting in and out of my building at NYU it has encouraged many conversations with people about Multiple Sclerosis. People who I’ve worked with for almost 5 years that had no way of knowing.

A common response for so many people is “Oh, you must have a mild case that doesn’t affect you then”. To which I explain, My symptoms are every day, all the time- it’s just that they are invisible. Sometimes I say more, sometimes less…but everytime I feel as though I’m educating one more person about the many faces of this disease. Adding to the list of people they know with MS, hopefully making it easier for the next person they come in contact with.

This walking stick is as so many things. I’m not sure I’ll ever give it up. I think I’m starting to love it.

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Don’t ever ASSuMe…

So this week Dr. Miller, by way of Jenn Decker (his nurse practitioner) told me that his latest thought is that this dizziness isn’t my MS.

No Way.

That caught me completely off guard, but it is exciting on a number of levels. The fact that it didn’t seem to be affected by the steroid treatment sent my mind in so many directions. Is this ever going to go away? Is this my new normal? I shutter to think.

But if it isn’t my MS, then it can be treated… it isn’t likely that it will be permanent.

But wait a minute….rewind 19 years to Baltimore.

Back in 1989 , my first year with MS, I was in film school living with 4 other girls in a town house off campus. After a few days with a virus I woke up to find my clock spinning. This was followed by a trip to the ER with a waste bucket between my knees. I remember the day vividly. When we got to triage I threw up in their garbage can and proceeded to do so at ever stop I made from there on in. After 17 hours in the ER on an IV, listening to very colorful stories of my neighbors behind the sheets serving as walls, unable to move my head with out losing my cookies- I was given a room. Being sans family in Baltimore left me little desire to go home. No one to take care of me there. My Dad and Linda came from NJ to visit me and my friends from UMBC art dept brought cheer and a mirror so for my three-day stay that I could see people entering the room.

When the doctors determined it wasn’t my MS and gave me a patch behind the ear. I didn’t question it. I used this little circular trans-dermal motion-sickness-aid while in Israel in 1985, in order to tolerate those hairpin turns on the buses. It worked then, as it did in this case.

As MS became less of an enigma to the medical community, I looked back on this experience thinking they didn’t know what they were talking about. Vertigo is now a symptom of MS …of course this bout was MS. To this day I have dealt with a quick turn of the head resulting in nauseas and dizziness…. I just thought it was a part of the me with MS. The part that is inseparable. After almost 20 years of this to have a symptom not actually be MS is mind blowing. I have so many crazy invisible symptoms going on and this fit in perfectly.

So I immediately checked in with my brilliant chiropractor. I hate to even call him that. He never cracks anything. (or I should say very rarely) His knowledge of how the body works, his instinct for areas that need release on a cellular level is beyond words, it’s impossible to describe the work he does. All I know is that Dr. Allan Verter needs to have himself cloned. It’s scary that all of this power to heal exists in only one person.

I’m not the kind of person that rushes to alternative medicine… I’ve been on Copaxone since 1993, and I’m on a number of other medications that clearly work for what the are there for. (that was an awkward sentence!) But the treatment that Dr. Verter provides defies explanation and it is successful. So once I learned that this dizzy head might not be my MS I couldn’t wait to tell him.

And he went to work. And my sense of stability on this planet has improved. And the people rejoiced. (or at least my people rejoiced!)

So now the question is…do I continue to carry this stick? It has served as such an important identifier on my commute. I’m not sure I should give that up.

Tune in next time for this, and a million other topics that will be addressed!

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yes i CANe

So the normal disclosure… if you’d rather not hear details of my MS experience that may make you uncomfortable about your uncertain future… consider yourself advised.


I’ve been using my walking stick for almost three weeks now. It didn’t take long for me to get used to having it around…and to learn how to juggle it with my commute gear. My backpack, my water bottle, my reading material, my ipod, my train tickets and then Metrocard. It takes some practice..but I’m finding the rhythm.

I’m move back and forth between considering what my needs are and how I am perceived. It shifts from day to day, minute to minute and scene to scene.

What started as a strange feeling that I am perceived as someone who is faking it… evolved into a better understanding of why I need this. Because I clearly don’t have problems with my gate (unless I stumble with a foot drop once in a while) it occurs to me that it almost seems unnecessary for me to be using it. I felt questioning gazes that I answered for the first two weeks with a sticker I put on my cane that read “I have MS”. The gazes turned to squints as subway passengers sat across from me looking my way.

I was reminded of the attempts I made as a young person (middle child) searching for that extra attention. The ace bandages and slings on perfectly normal arms, wrists and ankles. The troubled looks beefed up by eight year old winces wanting to stay home for a little extra mom-time.

But this was legit. Even though I was using the opportunity to examine how people treated me with this implement… I legitimately need it. It wasn’t a show.

As I got used to carrying it… and using it to provide extra support I found that I was able to move quite quickly with it. It seemed that as moved with the crowd people would frequently bumpt in to it, kick it, and one time a woman actually pulled it from my hands (inadvertently) when giving it a “flat tire”. Very apologetic of course.
During this time I questioned my role with the cane further. When leaving and arriving at work I had it with me and people I interact with daily expressed concern over my well-being. Most don’t know I have MS. My response to their concern changed over time. What started as a sometimes detailed explanation (I always try to educate whoever I can about MS) became “I have balance issues”.

It was a funny coincidence that during this period the Science Times had an article that described a more dramatic situation than mine. ( PERSONAL HEALTH; A Stable Life, Despite Persistent Dizziness – New York Times JANE E. BRODY)
Somehow finding this explanation helped me to identify myself in a more comfortable way. And even though no one asks me why I’m using it, I tell myself throughout the ride. “I have balance issues” and somehow that feels good. Not, “I have brain damage”, or “I have an uncertain future” just balance issues.

I like that somehow. I can own it. And the cane… just shows that I have more to contend with than the average joe (or jane..as it were) commuter. That works for me too.
more later…

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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!

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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…

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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!)

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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.

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Blog Rhythms

A lot of time has passed since I last wrote. Finding a blog rhythm is a curious process, writing to no one and everyone . Over the course of my teenage years I kept a diary, keeping track of the trials and tribulations of a troubled teen life that I would soon rather forget than have memorialized. Yet when my life became worthy of documentation, after my diagnosis for instance, my emotional turmoil and the energy required to merely exist was too taxing to document. Although my memory for detail is strong, I long for the specifics that only a diurnal record can really capture– to fill in the dates and details that my brain has glossed over as a coping mechanism.

It is a familiar concept… once life gets interesting we are too busy to seriously reflect on it. As with a recent episode, not having previous experience with the sudden onset of compromised sensory symptoms, I was too busy trying to live through it to consider researching it. Not researching has become my knee-jerk reaction to any MS related issue. In fact after almost 20 years with this diagnosis, I find it hard to imagine what it would be like to have a resource that I can trust. One that allows me to set the parameters. If I were to establish MS SoftServe immediately, I wonder how long it would take to me to work it in to my daily rhythm.

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This Blog…a greater purpose.

This blog gives insight in to the day-to-day experience of having this disease…on an intellectual level. My thoughts are that by explaining MS to as many people as possible will help a growing community of individuals with MS be better understood. I hadn’t realized that when I set out to share my thoughts on this blog that it could be more than a diary a shared experience. My intension in sending this link to all of my life connections was that many people know individuals with MS and might recommend this site to them.

As I began writing of my experiences it became quite clear that this Life of Learning with MS is also a Life of Teaching. This is no surprise to me as it is a siginificant part of the website I have developed- Learning how to teach others about MS. What I didnt’ expect was that sharing my experiences was a form of teaching. Teaching a little more to people who don’t understand or know what MS is. Giving them insight in to my experience is not only satisfying for me, it is also a good thing for everyone who has been diagnosed –as it will make them better understood and more comfortable.

I was surprised when I began to receive feedback about my blog. I had imagined that once I found an avenue to get the word out, that I would be creating a space to dialogue with people like me who have MS experience similar challenges in learning. So I began by sending out the link to everyone I know with an email address. It seems that everyone knows someone that has MS- or at least someone who knows someone. Six degrees of separation are more than necessary to make that connection. And I did get connected in many surprising ways to individuals who have MS and want to read what I’ve written.

What I didn’t expect however, was how many of my more immediate social contacts would benefit from reading it. Instead of it being a conduit to people with MS it has become something bigger. It is an inside line to a life experience with MS. Some friends and family hadn’t really understood what my MS experience meant. I didn’t realize this was the case until I began to read the feedback. Like the website I’m developing for people with MS and the people in their social web- This blog is for anyone who wants to better understand people they know who have MS and that including people who know me.  I return to the overarching goal that the more people who are educated about multiple sclerosis, the more comfortable people with MS will be in their world.

After almost two decades with MS I didn’t realize there was need for more of this level of comfort. I speak very openly about my experience. But, this blogging communication is very different. Having a venue to express my feelings and experiences and then reach out in such an enormous way is truly remarkable. I’m hoping to connnect to an even larger group- those with MS and beyond and continue to teach it forward.