Here's to 2011 -- I Think...

     The old year is about ready for the trash pile, along with Christmas dinner scraps, tattered gift wrap and empty boxes.  Not, I might say, a moment too soon.
     2010, to put it mildly, sucked.  Big time.  I lost my job, lost my lovely mother-in-law, lost much of the use of my hands, and gained an ALS diagnosis.  Delightful. 

Self-portrait with Support Team

     Some things just cannot be gotten around,  but they can, somehow, be dealt with.  My joblessness is not half bad, thanks in part to my company's "tin parachute"  (far from gold, but a parachute nonetheless... and the least those #$%&^s can do...).  I have re-discovered painting and writing, reverting to one-finger hunt-and-peck and experimenting with wobbly left-handedness.  I have reconnected with dear friends, finally having lost the burden of constant busy-ness.  I have a new and lovely relationship with my husband:  we have always had each other's back, always offered each other true caring, but now it is colored by time's finite limits and brightened by shared adversity. 
     I have tried to turn the finite and the adverse into pluses wherever I can: varying degrees of success, but always trying.
     So that's how I've been saying good-bye to 2010, sending the sucker out with a flourish and a fanfare.  I did up Christmas in a big way.  All the decorations, all the tchotchkes, all the gifts for kids & grands.  I baked cookies.  I made candy.  I had guests over for a traditional roast beef dinner (with plum pudding to boot).  I created a new painting for my husband and started another for myself.  I've made lunch plans with friends, Big City adventure plans with other friends.  I am doing as much as I can while I can. 
     I don't know how long that will last.
     I don't know what 2011 will bring, but I have hope.  Practicality, too, and planning, and awareness, because I know full well what "progressive disease" means.  So that whatever comes, I am sure it will not arrive with the devastating surprise and shock of 2010's events.  At least, not as much.
     I think....

     Happy New Year to all.  May 2011 treat you with kindness.

Mirror, Mirror On the Wall...

      Well, it took me long enough, but I just noticed something about my recent paintings: they're backwards.
      In the piece titled "Self-portrait With Hands," my right hand is normal, straight-fingered and brightly colored; my left hand is ALS'd, curled and clawed and dark. A good picture -- only it's wrong. My left hand is really the good one, and my right hand is a mess.
      I work with a mirror.  So I paint my reflection, familiar and "normal" to me, reversed and a bit skewed to others.
      All of which is not important in itself, but it made me think of other mirrors, other skewed perceptions.
      I realize that I have been looking at myself, all too often, through the mirror of my disease.  Every odd thing that happens, every "off" feeling, I have labeled a reflection of ALS.  And, as the old song says, it ain't necessarily so.
     A very reassuring set of meetings with my care team at Forbes Norris in San Francisco (and what a team -- I can't say enough good things about every single person there) has given me a new viewpoint and a new perspective.  If I trip, it is not necessarily because of new ALS symptoms: maybe I'm just not being careful.  If my legs get tight and lose flexibility, it's not necessarily because my ALS is worsening: maybe I just need more exercise.  If I am tired, it's not necessarily because of ALS: maybe I'm (hey! what an idea!) just tired. 
     Of course I do have to be aware of potential new symptoms. I cannot deny the possibility that changes are, indeed, due to ALS.  But I can't give the disease more credit than it warrants.  I can't let my life's mirror reflect only ALS.  My life is so much more than that.  I am so much more than that.
      Time to get out the mental Windex.  Let that mirror shine.

Art Therapy

    
     I've started painting again - with varying and sometimes surprising results.  

Self-portrait: Diagnosis

     As a right-handed person working with my left hand, the results are bound  to be different than my pre-ALS paintings, and I find myself using a lot of gesso and titanium white to blot out the more egregious "differences."  But I am struck by the similarities: my use of color is similar, my brush action, my combinations of broken-field texture with large flat areas, the latter-day quasi-impressionism that makes the viewer's eye do the

work and provide the details.

     Most surprising is the emotion revealed in some of my new pieces.  My husband says they are great -- and they scare him to bits.
     I'm working on two series of self-portraits. One, the "scare to bits" group, is a visual examination of my reaction to ALS.  They are very personal and, I am surprised to see, pretty powerful.
     The "Diagnosis" self-portrait above is a example

     The second group is a "bucket list" series, fun, somewhat frivolous paintings of 

Self-portrait with Race Day Hat:
Bucket List #1

myself in settings and  activities on my gotta-do list.  They are much more cheerful in color and mood, but they 're still pretty strong personal statements: I really, really want to visit these places and do these things!  (I have long wanted, for example, to go to a major horse race, wear a big frou-frou hat, the whole nine yards.  So my daughter and I, I hope, are going to opening weekend at Saratoga next summer --. big brim, flowers, feathers and all!)
        The very best thing about these paintings, fun or serious, art or not, lies in the doing.  Pushing paint around, playing with color, getting myself all splattered, even cleaning my brushes provide great physical therapy.  And trying to give visual voice to my often chaotic thoughts is turning out to be the best psychological and spiritual therapy I could ever devise.
                                                  *   *   *

      I would really like to hear from other PALS artists.  How do you fill your creative needs?  How has your approach changed as the disease progresses?  Does art provide satisfaction? Frustration? Release?  What do you create?  Let's get a good discussion going....

Self-portrait with Hands



Self-portrait with Glacier:
Bucket List #3











  



A Change of Clothes

     Sometimes it's the littlest things that create the biggest emotional upheaval.  Today I wept and wept because I can't do up my jeans.
      Not because they've gotten too tight (they're actually a bit loose because I've dropped a little weight), but simply because I can't.  My fingers cannot work the button or pull up the zipper.  They can't grasp a buttonhook or a zipper-pull, so even aids provide no aid.  I have become physically unable to do this simple, everyday task-- and the fact that is is a simple, everyday task, unimportant in the world's scheme of things and totally taken for granted, is why it it me like a ton of bricks.  It is why I cried.
      I also cried because this little loss is evidence of a greater loss: My left hand is losing strength and dexterity.  My left arm is getting weaker.  And just when I was getting so excited about being able to paint left-handed....
      Anyway, the run-until-tackled, power-of-positive-thinking part of me eventually surfaced -- and went shopping.  I may be faced with the challenges of ALS, but I am still a fashion fan.  I like to dress well.  I like to look as good as I can.  I want to keep that up as long as possible.
      So I guess I'm lucky that there are chic pull-on jeans these days, fashionable trousers and skirts with elastic waists (shut up, Clinton & Stacy),  over-the-head tops in luxe fabrics and beautiful styles and not a button in sight, attractive and fashionable shoes with low heels.  I'm lucky, too, that I can still be concerned about these things.  I hope I'm concerned about them for a long time to come.
      It's not shallowness.  It's self-esteem.  It's proof that, while I do have ALS, ALS does not have me.
    

When the Going Gets Tough, the Tough Get Gone



Taos Pueblo

        I mentioned in a previous post that, shortly after my ALS diagnosis was confirmed, I went on a road trip.  It was such a special, meaningful adventure that I have to write about it, to share it, even though it is no longer new news.
      I don't know how long I am going to be able to drive my Miata: shifting, putting the top up & down and all that.  I don't know how much longer I'll be able to go hiking.  I don't know how much longer I'll be able to get around all by myself.  But I could last month -- and so I did.
      I went, by myself, to Taos.
      Why alone?  Because I needed the time and space for reflection, for introspection. I needed to learn something about this new me, something I could do only on my own.
      And why Taos?  Because I'd never been there.  Because I find there's something magical and compelling about the Southwest.  Because of cultural heritage and art and hot springs and scenery and space and archaeology and food. Because my original idea, Sedona, was automatically eliminated due to the fact that it lies in Arizona.  (A long story, and political at that....)

Taos Pueblo

       I visited Taos Pueblo and met an old gentleman, full of dignity but very genial, an artist in wood and a pueblo leader, who told me how to bring spiritual healing into my home.  I went to a co-op gallery on the Taos Plaza and found incredible artwork -- crosses made of salvaged and recycled trash -- created by a man whose own life was salvaged and recycled by his God and his art.  I went down to Albuquerque and visited old friends not seen in years, who proved that true friendship pays no attention to time.  I went to a spa and soaked in a hot spring, then broke down and wept to the spa attendant, pouring out my story, and was comforted by her understanding as much as by her massage.  I stayed in the most charming casita and made it my own with sage bundles, pinon candles and root beer floats.  I drove the Enchanted Circle around Taos Mountain, right at the height of fall color change, and I hiked around lakes and canyons, and I sat to watch people fish.  I visited the Rio Grande Gorge and the Earthship Zone.  I made two discoveries at the St Francis of Assisi Church in Rancho de Taos: 1) I found out why Georgia O'Keefe and Ansel Adams found it such an appealing subject; and 2) I met a marvelous artist and charming man whose work now hangs in my home.
     And on the road I saw Capitol Reef and the Anasazi Cultural Center and the Canyon of the Ancients and rainstorms and hailstorms and a 35-minute sunset and the South Colorado Rockies and the Southeast Utah rock formations -- and was awestruck by all of them.

     I don't think the trip solved any problems, or really answered any questions. But it did provide some time to think, some experiences to treasure, some very real and very personal joy and, yes, a chance to escape.  Was it just running away?  Maybe.  But it was, although he doesn't know it, just what the doctor ordered.

Aztec National Monument



On the Taos Plaza



Ghost Rocks, Utah



Sometimes I Feel Like a Dissected Frog

     Among the manifestations of ALS that I am currently dealing with, perhaps the most irritating is the phenomenon known as fasciculation.  Fasciculations are muscle twitches caused by brief spontaneous contraction of a few muscle fibers (groups of muscle fibers are called fasciculi).  Sometimes fasciculations can be seen as flickering movement under the skin, sometimes they can make a whole limb jump, sometimes they are just felt as a little zinger.
     They are among the telltale symptoms of ALS.
     This doesn't mean, though, that all fasciculations are caused by ALS. "Benign fasciculations," unrelated to any disease, can occur in anyone.  These often show up due to stress, when a muscle is overworked, or because of potassium deficiency.
     In ALS-ers, they happen just because.  They happen any time.  For some, they happen almost all the time.  And they feel downright weird.
      When they first started ( and for me fasciculations did not begin for several month after my first symptoms of hand weakness), I thought I was getting a little electric shock from something.  Static electricity in the blanket? In my robe? From the dog's nose? Then they became more frequent, localized in three or four spots on my arm. And then they spread, so that now I am feeling them in both arms, my back and my legs, occasionally my face.
      My problem with fasciculations is when they occur -- or at least when I notice them.  They make their presence most known when I am relaxed, when I am reading or watching TV or engaged in quiet conversation -- when, in other words, my other symptoms are least obtrusive; when, for at least a few minutes, I can almost forget I have ALS.
     That's when the fasciculations kick in with a vengeance, when I twitch like a Biology 101 frog zapped with electrodes.  They remind me: yes, the disease is still here. They depress me: they take away the escape I hope to find in peaceful moments.  They don't hurt, they don't interfere with whatever I am doing.  They are just there.
      Every day. 
    

Involuntary contractions and twitchings of groups of muscle fibers. Groups of muscle fibers are called fasciculi. The contractions are relatively coarse rather than fine and are often visible. Some causes of fasciculations includes cervical spondylosis, multiple sclerosis, poliomyelitis fatigue and dehydration. Read more at http://www.wrongdiagnosis.com/f/fasciculations/intro.htm?ktrack=kcplink

Involuntary contractions and twitchings of groups of muscle fibers. Groups of muscle fibers are called fasciculi. The contractions are relatively coarse rather than fine and are often visible. Some causes of fasciculations includes cervical spondylosis, multiple sclerosis, poliomyelitis fatigue and dehydration. Read more at http://www.wrongdiagnosis.com/f/fasciculations/intro.htm?ktrack=kcplink

My Story, My Way

     I was resoundingly scolded recently for my approach to this blog.  This should be, said the critic, like a journal or a diary, chronicling my physical challenges, my feelings and emotions, on a daily basis.  It should not, continued said critic, be a series of stories saved up and written as if they were journalistic assignments.
     Fooey, says I.  It is my blog and I will approach it in my own way.
     That is the way I am approaching my ALS, too.  My way.  It took me, for instance, a long time to call family members and tell them: the timing had to be right, and I had to have the diagnosis well enough absorbed before I could discuss it with others -- even (or especially?) those I am closest to.    Another for-instance:  the day after my  diagnosis was confirmed, instead of curling up in misery (which part of me wanted to do), I threw clothes into a suitcase, threw the suitcase into my Miata and headed on a road trip to Taos.  My response. My way.
      The disease is going to progress in its own way, my responses and reactions along with it.  And as long as I do no harm, I can see no way my reactions or responses can be "wrong."  They may be odd, or different.  They will be... mine.
     Some days I am upbeat and optimistic, and except for the tangible physical limitations I can sometimes almost forget I have ALS.  Sometimes.  Almost.  Some days (or hours or minutes), I find myself plunged into a deep despair.  I cry.  I throw things.  I rage at the unfairness of it all.  Or I write it out.  Or I paint it out.  Or I just hug the dogs.
     And some days, I have absolutely nothing to say.

Down Goes Frazier! Down Goes Frazier!

      I took my first fall last week.
      I don't know if it was a direct result of my disease or just plain ol' clumsiness, but I do know that there are undoubtedly other falls to come. I know, too, that my difficulty in getting up was directly linked to ALS -- and it wasn't pretty.
      It was late at night, and I had gone out onto the front porch for a moment.  When coming back in, the darned doorsill jumped up and grabbed my slipper -- and down I went like a ton of bricks.  It was a thoroughly graceless three-point landing: left knee, left shoulder and face.  The dogs went off like Timmy in the well,  and there I was, butt in the air, down on the tiles, feet still out the door, completely unable to move.
       It was not a sensation of paralysis -- I knew all my parts were there and working.  It was as if I forgot how they worked.  Which way do my knees bend? How do I get my arm our from under me?  I was totally disoriented  and, for several too-long minutes, not connected to my body. 
      Finally, I was able to roll onto my side, get my legs under me and, eventually, get up.  It took a long time.  It seemed longer.  Seemed longer still to Scott, roused from sleep, his offers of help refused.
      I had to do it myself.  I couldn't accept help, as much as I wanted to.  I needed to figure out for myself how to extricate myself from a difficult (at best) situation, when one arm -- the one that was free, of course, and not folded uselessly under my body -- does not work, even at the best of times.
     Because, like I said, there are undoubtedly more falls to come.  My diagnostic testing showed that ALS had not yet effected my legs or feet; that, sooner or later, is sure to change.  And as it changes, I may trip more easily, be less steady, and -- eventually, probably -- be unable to walk at all.
      For now, though, I will consider this fall a fluke and, looking for that silver lining, good practice  Plus, I may have gone down, I may have looked like a fool slithering around trying to get up... but I didn't spill a drop out of the glass of milk I was carying.
      *     *     *
     One really good, super-duper, A-plus thing that happened on The Day of the Fall was that I got a hug.  By mail.  From a good friend and former co-worker.  Yes, a real mail hug: "1, Press card on face. 2, Apply pressure on left and right cheeks.  3, Think about how special you are to so many people."
      Thank you, Joan. You are very special!  That card and your kind note meant more than I can say.

This Damned Hand

      Strange oddities in my right hand -- weakness, lack of coordination, stiffness, all non-responsive to physical therapy -- were the first signs of ALS.  They remain my major symptoms, and are getting worse week by week. 
      Of course, compared with someone in advanced stages of ALS, I am still doing very well.  Compared with a lot of people with a lot of afflictions, I am doing well. Compared with how I was just a few months ago, however, I'm pretty piss-poor lousy.  And frustrated.  And scared about what is to come.
      I mean, if I am so frustrated and helpless-feeling now just because I need help with the pepper grinder or tiny buttons, because I have to choose carefully from a restaurant menu to order something that I can get from the plate to my mouth without looking/feeling like a dork, because I keep getting my hair cut shorter and shorter 'cause I can no longer style it... well, what am I going to do when things really get bad?  Is this the correct attitude of one who runs until tackled?
      Correct, schmorect.
      If I am going to be true to my purpose in writing this blog, I don't want to run my words through the filter of "should" or "want to," but just discuss, as truthfully as I can, my progression, responses and feelings.
      So... I feel piss-poor lousy and frustrated.
      I can't button my blouse.  I can't button my jeans.  I can't cut my own steak. I can't open a jar. I can't hook my watch.  Hooking my bra drives me crazy.  I type with my left hand (and sometimes my right forefinger).  I comb my hair with my left hand.  I try to put on makeup with my left hand.  I try to paint with my left hand.
      With my right hand, I can grip a steering wheel or a gearshift.  I can carry my purse or shopping bag by the handle.  I can still shake hands without that disgusting dead fish effect.  I can still write, but my four-year-old granddaughter has better, far more legible penmanship. 
      The most bothersome aspect is that I just have to think so damned much,  I have to plan the simplest things in advance: Put the keys in your left pocket only.  Button your shirt, front and cuffs, before putting it on like a pullover.  Are you going to pick that thing up with the left hand or right?  Once you pick it up, can you carry it?  Once you carry it, can you put it down?
      Once you start complaining, can you wind it down?

      Yes....

           

Diagnosis

      I first noticed some weakness in my right hand around the first of the year. As time progressed, the weakness became more pronounced, and my fingers began to curl up into a loose claw.  There was no pain, no numbness, just gradually increasing weakness and lack of coordination. What in the world was happening?
      With that question I began nine months of blood tests, X-rays, MRIs, specialists, physical therapy, diagnoses, mis-diagnoses, research and guesswork.
      Because I already have osteoarthritis, we first checked for a pinched nerve in my neck.  Bone spurs, nerve pressure, yeah, I got 'em -- but nothing, said the neurosurgeon, that could be causing my symptoms.  Next, a neurologist diagnosed a small isolated stroke, even though no signs of stroke were evident on the MRIs ("Very small stroke, very small...").  PT was prescribed, which, aside from introducing me to the sublime comfort of a paraffin bath, did nothing.
      My symptoms kept getting worse.
      Perhaps it was some form of autoimmune disease.  (What form?  I dunno.)   Tests showed not.
      Perhaps it was something bizarre like Dupuytren's contracture (no) or something common like carpal tunnel syndrome (no).
      While all these tests, treatments and referrals were going on, I was doing some research of my own.  The more things we eliminated, and the more my symptoms kept increasing (add fasciculations, or frequent, localized little muscle blips -- like mini-shocks), the more I was led toward one possibility.
      So that when, eventually, I went to another neurologist, then a third, then went through EMG testing and nerve conduction studies, I sort of knew what was coming.  I expected the diagnosis of ALS -- and I got it.
      That doesn't mean hearing the official diagnosis was easy.  It doesn't even mean I was prepared, not really, not fully.  It means, more than anything, that what I most feared came true.
       But silver linings, however tarnished, exist: I am lucky to have been referred for final testing & diagnosis to Dr. Jon Katz at the Forbes Norris MDA/ALS research Center in San Francisco. Dr. Katz is empathetic, positive, thorough and attentive. The center works on a "team" approach with highly individualized treatment.  The 2 1/2-hr drive is well worth it.
       And the greatest silver lining of all is the one that shines every day of my life: the support, understanding and love of my husband, Scott.  We'll be afraid together, and face changes together, and be strong together - and run until tackled.

The Beginning...

      Just last month, I was officially diagnosed with ALS, or Amyotrophic Lateral Sclerosis, or Lou Gherig's disease.  Have I absorbed what that truly means?  Yes. No.  Do I feel different? Completely. Not at all.  Do I know what is in store?  Intellectually, pretty much.  Emotionally, no way.
      ALS is a motor neuron disease that effects voluntary motion nerves, which in turn causes weakness, wasting and eventual loss of function in voluntary muscles.  It is progressive, deteriorative, incurable and fatal.  Given those cheerful basics, it is highly variable, progressing quickly in some people, slowly in others, localized in some, body-wide in others. Average lifespan is two to five years after diagnosis -- but that is an average.    
        More detailed medical and scientific information can be found on ALS websites (check http://www.alsa.org/; http://www.lougehrig.com/; or http://www.als-mda.org/disease/als.html for more details than I can begin to offer).  This blog is not meant to be that sort of informational clearinghouse For one thing, I am no expert. For another, I am not neutral enough to present unbiased, unemotional lists of facts. I can only present my own view of what it's like to be right smack dab in the middle of all this.
       I can't say I am a "patient," because so far my physical life is maintaining at a fairly normal level.  I can't say I am a "victim" of ALS because so far I refuse to be a victim of anything.  The title of this blog really says it: I will keep running until I am tackled.  Then I will run some more.  And some more.
      And I can't say that this blog is a primer on how to cope with ALS.  My responses, physical and emotional, to the disease are and will be my own.  Sharing them here may, just may, help others with ALS. It will, I know, help me.
       More coming soon....