Tag Archives: multiple sclerosis

by

“Some” Voices of Multiple Sclerosis

I read  a recent  edition of the New York Times blog column Well entitled Voices of Multiple Sclerosis.  My husband is my editor. He is the one who steers me past the articles that he know will torment me for days and to the ones that will intrigue and inspire. It’s easier now that we have made the “green” transition to e-reading. Instead of piles of folded papers cluttering our flat surfaces, emails accumulate in our virtual mailboxes with encouraging subjects such as “Keith thought you would be interested in this…”    Such was the case for Voices of MS. And while it sat in my “in” box for a bit, eventually I did read and in this case listen.
I was moved to write a letter to the columnist Tara Parker-Pope though I have yet to send it. So, I thought I would post it here and get some feedback from my readers.. especially those of you who have MS. (but not to out rule those who don’t!)
Ms. Parker-Pope,
Thank you for giving voice to some of the diverse individuals who live with Multiple Sclerosis. Watching and listening to their experiences brings out many reactions; personally and professionally.
As a person who has been living with MS for over two decades I connect with each of these stories, with an understanding that ranges from “I know what you mean” to “will this be me?”The latter of which is the approach/avoidance that I experience with everything I read or see about MS. I have met many people with MS over these 20+ years that echo this sentiment.
It’s hard to satisfy such a varied group of people. Any media outreach is obligated to represent. If the sampling doesn’t provide a person from each “walk” of life then someone is alienated. In doing so however, many people with MS who are fearful of their uncertain future are not interested in reading more. Though some want to know every possible outcome so that they can plan for what might happen, many don’t want to waste valuable energy worrying about something that may never occur. It’s counter productive on so many levels most significantly, managing each day do be the strongest one can be within their individual circumstances – emotionally and physically.
It is this reality that inspired me to become an educator that uses technology to create ideal learning environments for individuals who live with such an uncertain future. I have designed a web-learning approach that allows each person to customize what s/he wants to learn and how s/he wants to learn it.  Called MSSoftServe.com, it uses techniques supported by learning theory and preferences that can be set to reach each unique individual with MS.
This educational tool serves up information as the users want to absorb it – based on their own symptoms and concerns – without exposing them to information they are not looking for that replaces their desire to learn with fear and uncertainty. Or if your approach is more “rocky road” (“I want to know those worst case scenarios”), you can specify accordingly. Whatever the situation, this new way to learn about health on the web is self-directed and ultimately empowering.
(MS SoftServe is a non-profit organization currently seeking grants to fund its development…blah blah blah.)
I just left off there. I’ll obviously revisit this before I send it to her. Maybe a more refined ending! 🙂
In the mean time… I welcome your thoughts.
~ag
by

Pixel Bound

This has been an unusual couple of weeks. I have felt the need to blog so many times, and have been unable to get here. Some days I find myself crafting the opening phrases and titles of entries that never find their way to the pixel.  I’m starting to recognize them as a neurological archive of drafts. Will I ever get back to them or will they languish in word purgatory? I wonder. It also gets me thinking about my creative process. I’ve been learning a lot about how I create,  edit, and ponder my life experience. It has been quite profound. The power of my own words has surprised me as I use them to console, inspire, and comfort me.  I hadn’t realized when I began this blog in 2007 not only how healing it would be, but also its potential as  a creative vault that when opened has great impact on my today.  It amazes me in different ways continuously.

Yesterday I made a bad decision. Although I was hesitant to admit it, I have been relatively dizzy-free for 3 weeks. It happened gradually, with small set backs caused by certain movements. This past week however, I’ve been able to move in ways that had been previously off limits.  Most notably, I could look up without being left in an unstable place. I have even been increasingly comfortable telling people of these improvements,though it has taken me 15 days to feel truly confident about doing so.

I have to admit too, that I began to slide off the “MS Recovery” style diet a few months ago. While it continues to inform my eating decisions, the rigid requirements of doing without certain things – is no longer in play.  I quickly recognized that this wasn’t having  impact on my dizziness and though I know the change of eating is a long term investment for MS…  and overall health improvement.. however, the thing that kept me on it was the hope that it would impact my dizziness. Somehow when that didn’t pay off after 5 months I gave in to temptation.

This is disappointing to me on some levels. I like how I feel when I’m eating by those rules. I have less temptations and compulsions toward feel good food. (like chocolate!) But along with those compulsions comes food that feels happy… and while I know that in itself isn’t the best way to eat… I missed it.

Okay… back to my egregious error. I was very excited yesterday to actually do a load of laundry… take it out of the dryer.. immediate fold it and hang it up so it doesn’t all sit in a wrinkly mess only to be dried again… and again.  It’s those little things.  Anyway… I was unloading.. and folding and hanging on a rod in the basement over my head. With some repeats of this motion I found that I was feeling nausea. But… I pushed ahead figuring I would be done shortly. Nearing the end, I was able to hang the clothing up without actually looking up to make sure the hanger was properly placed. Ah those little skills we accumulate!  Unfortunately, as I completed the task I realized I went a bit too far.

And that dizziness still lingers 24 hours later. That is just wrong! I was just folding some laundry! If my husband didn’t already do 80% of the tasks our life requires, I would pass this off to him. But the reality is I get pleasure from the tasks that are small and satisfying. Ones that don’t require edits and rebooting, and analysis. Very succinct, a start middle end. Even unloading the dishwasher brings a certain amount of satisfaction in my day… balancing the complicated tasks with the quick and should be easy ones.   The good news is that I am fully capable of sitting at my computer, writing in my blog and submitting grant applications on behalf of MS SoftServe.

Last week I met a faculty member at NYU who has had MS for 35 years. He has his challenges, as we all do.. but he offered some words that help him carry on…  “At least I wasn’t born in Sarijevo”.  I guess that speaks to me as I try to keep everything in perspective.

At least I was born at a time that traverses the digital age.

So much to chew on there.

~ag

by

Silent Clamor

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I’m feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day’s distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn’t be the same. While the details on the outside were identical to yesterday’s, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven’t known for some time.

So many take a stairway trip for granted. I’ve watched how effortless it is for most – not a second thought, never even grabbing the handrail. I haven’t had that luxury since I was 20. But today, I added a little skip to may downward trend. Taking a moment to experience that minor change, and relish it later as I write- it’s a nuance that excited me for what I might notice on the way home. Wish me luck.

by

A letter to Dr. Jill Bolte Taylor

Dear Jill,

I have just finished reading your book, My Stroke of Insight, and I am so completely moved by your experience. While it is true that any person with a brain would be taken in by your story, my relationship with my brain has been a challenging one and thus it is that much more a significant read for me. I have just celebrated my 20th anniversary with Multiple Sclerosis and your book has driven me to revisit my relationship with said brain.

Over the years my brain has been many things. My brain was labeled average in a lacking school system that didn’t recognize different learning styles. As I entered college and tried to see what it was made of, I was diagnosed with this unpredictable disease. From an early age I learned what I can’t or won’t be able to do.

But my brain ultimately came through with a positive attitude that has served me well in spite of life’s pitfalls. Experiencing my version of MS, I grew stronger in outlook and my brain and I lived happily until the new next episode hit and I feared I could not handle it. But we became partners again as my right hemisphere gave me courage and my left side joined in with a plan to manage the loss. This sequence happened repeatedly as I lost abilities or gained symptoms. Ultimately my strength of character (right hemisphere?) came through and served my brain well.

The relationship with my brain remained stable as long as I could handle the blows that my immune system was dealing me. When symptoms arose I doubted my ability to incorporate them in to my daily routine. Depending on the symptom, the arc of acceptance varied in size and length. Pain was one that was particularly hard to handle. Luckily my brain found a way to make it more manageable… and eventually a new circuitry was established with which I could cope. So you see the rollercoaster ride my brain and I have been on these 20 years.

What I realized in reading your book is that my brain deserves applause for the cellular genius that it exhibits everyday. My brain isn’t my enemy… it’s a victim of these unwarranted attacks from my confused immune system. It needs the encouragement and rewards that you have illustrated in your story. There are many symptoms for which my brain has found a new neural network – giving me back abilities I’ve lost. For the symptoms that are constant I realize now that I can rally behind my brain in an encouraging way.

Your experience is beyond the comprehension of most people. To have a tabla rasa, to rebuild from 0 is more than most of us can begin to imagine. Your telling of that experience is awe-inspiring. But more importantly you have shown me (and so many others) that these internal conversations, and use of energy that is beyond our human limits to understand is in fact scientific… not speculative hope. And that is power beyond our neurons.

Thank you Dr. Bolte Taylor. You have given the world an enormous gift. One that I will enjoy daily on this neural escape called life.

P.S. I will most certainly donate my brain to science.

by

MS Technology Collaborative- MyMSMyWay.com

In early 2007 I was invited to be on a the steering committee of the collaborative efforts of Microsoft, the National Multiple Sclerosis Society and Bayer Pharmaceuticals. At that time they were composing an outreach mechanism to inform us (the MS community) about the technologies available that help with various symptoms that we struggle with. (Especially the technologies that help us stay connected, like that screen you are sitting in front of, for instance.) And they were turning to us for insight on how to best communicate that information.

How great is that?! It was certainly exciting to be a part of this panel of people selected from across the country to represent individuals with MS. They were (and are) truly interested in what we had to say, and even better, they put that information to work. This is evident with the first development: mymsmyway.com. This site is the portal for resources. The one-stop shop for the information you need to know about the latest and greatest technologies that are available to support your life in the digital world.

On this site, you will find the snapshot tool. With this tool you can focus-in on what your needs are, and what exists to support those needs. For a quick preview of what those technologies are you can review the section marked Technology Tips. But if you prefer a more visual learning style, check out this youtube video. There you can see the actual gizmos in action that can help you solve the problems you hadn’t considered solvable! (and when you get to the end you will even see yours truly speaking the praise of this effort!)

So the collaborative continues and thus the steering committee is being utilized to inform outreach of more tools and more projects. It is truly an honor to be on this committee; to represent a group of which I’m a 20 year member.

So that brings me to the question: Why haven’t I brought this topic up on this blog sooner? It’s such an obvious venue for discussion… and certainly of interest to this blog’s expanding readership of individuals affected by MS who are clearly interested in functioning well with their computers! For an answer I glanced through the archives of my blog entries. And what I found was that I didn’t really start writing on this blog with regularity until December. (see blog rhythms) In fact I didn’t even start discussing MS SoftServe until after that time. So, it’s not hard to see what the lag time for this entry was. I clearly hadn’t gotten my “blog-groove” on until then. It’s hard to remember a time when I didn’t use my blog as a form of expression. Can it really be only 8 months ago??

Whatever the case may be, I’m bringing it up now and I look forward to keeping you informed about the many resources that this well-informed collaborative is bringing to the table. In fact… I will add them to my blog roll right this minute! Check back to see more info about the MS Tech Collaborative using that tag. I assure you I will be more current with my updates!

Thanks for reading!

Amy

by

Blog Blog Blog.. is that all you ever write about?

An obscure altered quote from the Bill Forsyth Scottish hit movie of 1981 Gregory’s Girl. That was back in 7th grade for me. I even remember when and where I saw it. (The Forum Theater in Metuchen, NJ)  An obscure reference to say the least. It’s not even among IMDBs listing of quotes from that movie. Yet, it continues to hog space amongst the old phone numbers and birthdays of people I will never speak to again. And of course.. those scars. Those MS lesions that have been accumulating for 20 years.  

I take about 30 minutes every morning to peruse MS blogs, and write in my own. (actually this is a new addition to my daily routine, I like to make public statements like that so I can commit myself to things!). I read over and over how people are living with this disease yet it doesn’t define them.  It makes me wonder.

I’ve mentioned that since I was diagnosed at 20 years old, MS underscores my every fiber. I speak of how it molded me and shaped me to be resilient and powerful.  It forced me to recognize that I can accomplish far more than I thought, neatly categorizing my life in to sections. Sections entitled “fear of uncertainty”, “pain of speculation”, “coping alone”, “coping while dating”, “coping through marriage, childbirth, Life stressors, advanced degree, business efforts”. Every stage and experience of my life has been punctuated by my MS and the unique symptoms it doles out regularly.  So, I hesitate when I read other people’s experience that “ms doesn’t define” them.  I’ve never been a grown woman without MS and I’m not sure who that person would be. 

Or maybe I can find that person with some effort, and I don’t want to. I teeter nervously on speculation. I can look at who I am along with MS. But when I even begin to look at myself without it.. for the sake of discussion… I only come up with points I’d rather not even consider.  It only serves to illustrate a loss. What I can’t do. What’s the point.

So MS does define me. It offers me constant daily challenges for which I work hard to rise to the occasion. To add strategy to my belt of coping and you know what? That empowers me for the next step.  So I won’t question my definition. I’ll relish in the me that has happened with MS. 

I’ll try that on for a while. In the mean time feel free to share your definitions of self.

~ag

by

Happy Birthday (Anniversary) To Me

So here it is. Saturday, June 21st of 2008 I’m celebrating my 40th birthday and the 20th anniversary of my diagnosis. Being diagnosed with Multiple Sclerosis on your 20th birthday might seem like a cruel joke to some, but for me it was the beginning of my life challenge. What seemed to be an insurmountable prognosis became a series of tests that I passed with flying colors.

Don’t get me wrong… It would be an understatement to note that a lot of this ride has been very difficult. I’ve certainly spent time crying, shaking and cursing the universe that assigned me this lot in life. Wondering in fear what is next and how will it change my everyday. The “what ifs” and “will I be able to handle it ” question marks clogged my already crowded neurons. That ride started out like a rollercoaster with no end in sight. The loch ness monster at bush gardens in virginia is the best parallel. I was too scared to go on it as a 10 year old but I’ve been riding it every since my 20th birthday. This time I was taller than the hand on that little animal painting and had no excuses for not joining the group of apprehensive riders.

Apparently the same universe that I cursed, thought I could handle it… even 20 years ago at this very low period in my life. Apparently it (the universe) was correct. “That which does not kill you makes you stronger” is an apt theme for what turned out to be a scary course with MS. The people I meet who have had this diagnosis for more than a couple of years mirror that posture. It’s the once unwilling boxer now shouting “Is that all you’ve got?” “Bring it on!” I’ll show you what I can handle. It may have taken me years to find this fighter in me… but its with me now. When I think I won’t be able to cope with the symptom de jour… I look back at what I rose to the challenge of, and feel emboldened. (I think I may have left out 1 metaphor…should I go on?! 🙂 )

In 1988 I was just starting out on my life, independently from my family. New to Baltimore I sought out friendships, dated and learned who I am as a filmmaker in a pre-digital, pre-internet world. I also needed to learn who I was (am, will be) as a person with Multiple Sclerosis. Yet I didn’t yet know who I was without MS. The spectrum of “what might be” seemed vast at 20 years old. I feared everything. Would I be able to complete my degree? Would I ever meet anyone who could love me with this disease? At a time when I was unsure of who I am in this world, I had to cope with unsureness of my being at the most pure level.

Discovering myself as a person with an organic disease that is completely unique is very tricky. When I reflect back on that time I wonder how I got through it. Because I was simultaneously coping with my parent’s divorce and my mom moving to Florida, I was alone in the process. But like many things in life, time is the great adjuster.

Time heals all wounds… except of course if they are scars. In retrospect the wounds of coping made me a stronger individual. I feel that who I am today has been shaped by my ability to cope with unexpected changes. As I leaf through the pages of the history that is mine with MS, I continually make that positive Hmm sound. You know the one.. with the little lift on the the last “m”. Almost questioning. As the years progress and I continued to reflect I realized that I can deal with far more than I ever imagined I could. The initial fears that came up while reading the list of possibilities in 1988 played themselves out very differently.

But the THE UNKNOWN loomed large over my college graduation. As I sit here 20 years later, a mother, a wife and a person who owns this version of MS – the next 20 years still hold a lot of question marks. But looking back and looking forward I can say that whatever is in store for me, I can handle. The list of possibilities that fuel(ed) my fears is now like a crossed off grocery list halfway through the store. I’m not sure what that will mean, and I still shudder to think of what I may or may not have to add to my column of coping. But I do know this, my power to persevere has served me well and when it comes down to it, living this life of challenges is always better than the alternative. And conveniently the world of medicine and pharmaceuticals is working hard every day on my (and my peers) behalf to make sure that the second half is easier than the first. How great is that?

by

Dizziness Reduction and Alternative Reporting

So here I am, a month after starting the MS Detox Diet… or my version of it. And my dizziness that began way back when in December is subsiding. It happened so gradually I practically didn’t notice it. In fact the change was so subtle at first that I couldn’t determine what felt different. Just that something good happened. And the sensation is still present when I move certain ways- reminding me not to get overly confident. I’ll turn my head as I’m walking away and everything shifts. But for the most part it’s taken a break. It’s off center stage and blending in to the scenery. No longer does the world as I perceive it change when I go from a seated position to a standing one. Such a smooth and gradual transition… that it wouldn’t be difficult to forget. But now, when people have the courage to ask me how I’m doing… I excitedly report something other than status quo. And I remind myself to not get overly confident as I tell them that is crops up periodically. Don’t get used to this … because it can change back in a second. Since my “recovery” I have reverted more than once. As Dr. Verter, who has been treating me more regularly said, “don’t expect that this will be anything but a minor setback”. And he was right. And so it is. But I will keep my fingers crossed in an “un-superstitious” way. Hoping, praying? To the higher power that exists in this universe that this will be all but a distant memory to recap in a “what was” report of my Multiple Sclerosis.

by

MS SoftServe, off and running!

Yippee! A triumph over the endless digital dilemmas, web master Bonita has figured it out (as always) and the video that describes the staging ground of MS SoftServe is up on the site! www.mssoftserve.com It’s also on youtube in an abbreviated way. I hope this video will help to explain why MS SoftServe is needed, and how we can make it a reality.

So now I switch gears to copy writer and layout artist (with the support of familial experts ) to create a brochure to spread the word about MS SoftServe to potential sponsors. Awaiting the delivery of the legal documents to register with IRS and get my 501c3 number. Then the fundraising aspects of the site will be functional.

For all of you out there who have expressed support in making this site a reality, I’m assembling a list that I will use as evidence of need when I approach sponsors. This will also serve as a mailing list for important announcements. While your writing… take an opportunity to request something that you would like to see produced on the site. The way to make the most of this site is for it to be a “For us, By us” venture. Join me in its development!

by

MS SoftServe- and so on, and so on.

When I started reporting on the status of MS SoftServe I think I had imagined something that would be more…. consistent. I don’t know… progression seemed like a reasonable expectation. Then reality happened and I’m reminded that with increasingly limited funds, a full time job, and a family its not surprising that this is moving slower than the polar ice caps are melting. (a sad metaphor, I know) Bonita, my web master, also has a fulltime job and while she has more free time, she longs to work on this fulltime. She lamented to me today that she pines for a time when she can labor over when something isn’t working for 24 instead of 16 hours. In the meantime I’m busy pushing 501c3 paperwork along so I can start researching grant applications, and I’m creating surveys, and writing proposals and sometime its hard to see the incremental movements. But they are happening. We are about to post the video that describes the need for MS SoftServe and the functioning aspects of the staging ground. On the home page of mssoftserve.com and youtube.

On a more exciting note, I met with Alex Lindsay, the chief architect of PixelCorps (The Pixel Corps is a guild for the next generation of craftsmen… digital craftsmen.) today. What an inspiring person. When I first met him in 2005/06 he was the spark that got me to “think big”. So that is what I did and thus I’m now connecting with him about how PixelCorps can develop elements of MS SoftServe. It’s all very exciting. The craftspeople at pixelcorp require production opportunities so that they can learn skills and experience the client feedback and interaction. There one requirement is that they don’t get paid. An ideal alliance if you ask me. Bring it on…