Like Mike

Today's topic: legs. My legs. That used to be Strong Like Bull. Calves and quads and hamstrings that pushed me mile after mile, up and down hills, across more than two dozen marathon finish lines.

Louise initially took up residence in my right hand then baby-stepped to the left and the legs. At the time I retired I was still walking, a lurching zombie shuffle.I experienced a whoosh! moment here--less than a year later and my gammy gams are no longer Strong Like Bull, they're more Weak Like Noodles. Walking is but a distant memory.

I can assist with transfers. When lifted and supported I manage the two or three steps backward or forward to my bed, potty, shower chair, etc. It's not pretty; the right leg is weakest (surprised?) and it drags a bit. But there is a silver lining! When taking these draggy steps, it looks as if I'm moonwalking. I may take this show on the road, you know, as a moonwalking zombie.

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For the record, my pins are a couple of twitching maniacs. From hip to toe it's twitch, twitch, twitch all day and night. My hands and arms used to twitch like that and we all.know what happened to THEM.

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Better get my zombie on. Bonne Dimanche.

Dreamin'

I just woke up from a great dream. I was brushing my teeth, manipulating my toothbrush easily with one hand -- my RIGHT hand. It's been so long since my right hand did anything that I paused mid-brush to capture the moment.

Short but definitely sweet.

Use your imagination

One shoebox.
One  hand towel.
One-half facecloth.
One measure blue foam tubing.
Three rubber bands.
One spinning toothbrush.

Zoom

As helpful and liberating as my borrowed SmartNav is, it's a bit slow (translated VERY slow) for my purposes. It's better than nothing and I'm incredibly grateful for the loan but AARRGH! It can take forever to do anything and my limited powers of patience are practically kaput.

With any luck there'll be a Dynavox Eyegaze on my table  in the next several weeks. I visited NRH last week and test drove a nice, new model that can go from zero to 60 in the blink of an eye.

Zoom zoom.

No time like the present

The only reason for time is so that everything doesn't happen at once.  - Albert Einstein

When I first heard that quote -- many moons ago -- I envisioned all the events in my life stacked neatly in a pile, strategically separated by fine strips of cellophane, similar to slides. Without time, or the slides, everything rushes together in a sort of whoosh!, no structure or reason.

From diagnosis until about a year ago I progressed fairly slowly, meeting each new challenge with creativity and ebullience, adapting to each new normal with the panache and humility for which I am well known. Create a car key contraption, insert slide. Walk instead of run, insert slide.  Make changes to wardrobe, insert slide. And so on.

Over the past year there have been a couple of whoosh! moments, when the pace  of my progression moved too quickly for the slides to separate. So much changed so much faster that, when I stopped to reassess, the spaces between the events were blurry, indistinct.

Thank goodness for time...for the time we are given.

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Many years ago, shopping at a department store, my two little daughters asked again and again what time it was. Unnatural mother that I am, I answered, "Time is a concept." After several minutes of this a nearby salesperson took pity on my darlings. Not bothering to disguise her impatience with me, she smiled sweetly at the girls and said, "It's 3:30, dears." I still smile at this memory.

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Until I was unable to manipulate the clasp or strap of my various watches, I always wore one. My wrist still feels bare.

Pee-noo-moe-nyot

Still silent, except when I cough. Then a gurgly, shoulder-shaking, gaggy thing happens, tarnishing the beautiful golden quiet.

The past few days have been tedious and tiring. Up so late trying to un-gurgle that it became early morning. Sleep was no refuge; pain on my right side and irritating coughettes didn't allow much rest. One of my caregivers suggested pneumonia. Pneumonia is one of my top two ALS fears (the second is falling), and once this little seed was planted it pushed tiny roots into my thoughts. I didn't go all crazy, but I didn't dismiss the idea, either. Pneumonia, pleurisy, numerous bouts of bronchitis and too many years as a smoker leave me a tad susceptible to respiratory ailments. Worth a visit to Doc-in-the-Box.

The visit was, er, productive. I was my most charming, yukking it up with the doctor. My charm and wit, delivered with a non-voice and poor enunciation, met with faux appreciation; attempts at redelivery fell flat and forced me to realize that I'm not really as charming and witty as I like to think.

A lovely little antibiotic is already taking control and I look forward to a regular snoozefest tonight.

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I neglected to mention that it's NYOT pneumonia. You probably got that already. You did? Okay, good.

Silence is golden

I seem to have lost my voice. Is it a cold, settled in my throat? More than likely. I had a sore throat Saturday, was croaky much of Sunday, and by the time Green Bay beat Pittsburgh I couldn't even manage a whisper. This new level of non-communication is highly irritating.

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Say what

Adam called me today. Nothing out of the ordinary about that EXCEPT he had a hard time understanding me AND, thanks to an echo, I heard how I sound to others. Rather a wakeup call.

Tickety talk...

Beautiful sweet sweat*

I miss sweat. Not ladylike perspiration, the sweat that comes from a fabulous long run that, in warm weather, dries on my skin like a salty rime, or that, in bitter cold,  forms little crystals of ice on my cap or jacket. The sweat that flushes out toxins -- some of which I replace after the run with a delicious and nutritious Corona Light. Sweat that ran into my eyes and ears, stinging one and tickling the other.

It's basketball season, my favorite spectator sport. No, I did not play (unless forced to in gym), in fact, I regarded basketball with disdain. (Those who can, play; those who were usually picked last and cannot, disdain.) Players running back and forth, trading points--what was  THAT  all about? Worse yet, they were sweaty. Disgusting! But then I started running and realized there was value and purpose in sweat, I daresay even a beauty.

Along with my new appreciation of sweat came the first hints of an interest in basketball, particularly Maryland Terrapins basketball. I admit, I was influenced by some  special friends who are alums, it helped that the team was enjoying a good season. Little by little, my understanding of the game grew and I was hooked. The once despised sweat was now a testament to the athleticism and energy of the players.

College hoops dunked me (heh heh) into a Washington Wizards' basket when two Terps landed on the Wizards' court. I'm now a lost cause, preferring college ball to the pros, but loving it all.

Where was I going with all this? Oh, right. Sweat. During the Wizards' game against Dallas last night, one of the Mavs shook his head in a way that reminded me of how I shook my head when sweat ran into my ear...tickling it.

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Go Terps!

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*Who knows the origin of the catchy title?

Dreamin'

In a huge indoor football field, people sit in clusters; groups of two or three, occasionally  more, are randomly scattered. Everyone, myself included, is waiting to be tested. A much younger version of me responds when called. Unseen interviewers ask silent questions, after which  I'm infused with long threads of brilliant blue light. Glowing under my skin, the light invigorates me and fills me with a joy I can't describe, and I dance with abandon.

Another interview follows the dance. Seated on a wooden bench, I'm beyond happy to see beads of fluorescent green sweat on my body -- which is unclothed. I don't care, my many caregivers, traumatized daughters and one bossy (and very good) friend have forced me to overcome my modesty.

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I would love love LOVE to dance like that again, awake or asleep.

Dreamin'

I'm walking through  the office of the start up where I worked in '99-'00, but when I turn a corner I am in the operations center of the bank. There are people everywhere, some of whom I recognize, and I move from one to another, surprised I remember so many.  Wandering through empty offices and deserted corridors, I happen upon a large (and empty) auditorium. On stage is a gigantic touch screen displaying  an image of an ice cold bottle of Coke. I know it is cold from the way the bottle is sweating. It's so realistic  I'm reluctant  to touch the screen to change the display. It is NOT cold and wet, of course, but it won't budge. I try swiping left and right, using both hands, arms, even shoulders, all to no avail. Abandoning my efforts, I leave.

I'm in Wyoming. It's hot and dusty, and there are many people in line to go to a high-walled fort. I'm with several women, including my sister-in-law, who says the fort is my brother's favorite place. We decide to go in, but instead of waiting, we hold our arms together and FLY over the wall.

Alone, I walk in and out of random buildings, all of them unexceptional and empty. Turning onto another dusty street I stop, something is not right. I run away but I'm too slow. My only hope is to fly but I don't know  if I can. I put my arms together, look up, and I am airborne! Swooping this way and that, I fly and fly.

Definitely my kind of dream.

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Mystery solved

Yesterday's impassioned enquiry yielded the desired result and I now know the identity of the gift givers.

Thank you, my dear friends, for the beautiful print of a lovely part of my favorite city . Thank you, too, for the tasty treats you delivered "this weekend," and thank you for the visits, and the cards from the kids.  (Nice job on the cursive!)

I'm lucky that you are part of my sum.

Thank you, (insert name here)

The other day our friendly UPS man delivered a package containing a wonderful framed print, but the sender's name was nowhere to be found. I have an idea who might be responsible for this act of kindness, but just an idea. Anybody out there able to identify the giver behind the gift?

'Tis better to be silent...

In recent days I've noticed an interesting phenomenon: When I'm talking to two or more people, there comes a time when one or another of the group shifts their gaze from me and looks beseechingly at  the most advanced translator present, either daughter or caregiver or friend. The translator fills in the blank and we move on.

I recognize the look on their faces because I've worn the expression myself, talking to others with ALS. Not wishing to offend but not understanding, I'd look for someone to throw me a rope. My family seems to be adapting well, but if I'm tired or I try to say too much, they struggle. Unfortunately for them, my rope throwing days are over.

As a result of my altered speech, I am not talking as much as I used to. Nobody is struggling with that.

This 'n that

Writing with the SmartNav is rather tedious but it's better than nothing. NRH called today to schedule my needs assessment; with luck I'll be using a speedier system before too long.

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My left hand, envious of her slothful sister, is mimicking (extremely convincingly) almost all of her annoying attributes. It's surreal to be attached to hands that do NOTHING. Stupid Louise . I wonder what she's doing with my real hands...

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Another example of how Louise-som I am these days: I cannot walk, not even the hand held little shuffle I managed only a month ago. Now  I bear my weight during transfers. Period. Added bonus: rubbery ankles when I get out of bed. Makes the first transfer of the day verrry exciting.

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Let's see, what else can I share that will enchant my admirers? How about the way I lean to the right (physically, not politically), or how I "leak" ever so slightly from the right corner of my mouth? How my navy Crocs are worn with everything (I'll get something pointy-toed for the wedding)? Too much, you say? Hard to believe so many attractive characteristics are wrapped up in one phat* package? This is just the tip of the iceberg, darlin'.

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*I first heard this word in 1970, when my friend, Theresa Youngblood, explained that, if a boy called you "phat" (versus "fat"), it was a good thing,a compliment. My 12-year old brain was at a loss trying to figure out how to tell the difference without asking the spelling. Fortunately, no boy ever called me anything, so I was spared. Is this little bon mot even used anymore?

Feasting with friends

The running club's annual banquet was held Sunday. I wasn't going to go--I feel somewhat self conscious in a roomful of runners--but realized I was letting stupid pride get in the way. So I went, kindly squired by Janice. The banquet was on the upper level of a local restaurant and we'd been assured it was accessible via an elevator. Well, there are elevators and then there are elevators. This elevator reminded me of the petits ascenseurs I've ridden in Europe, hardly big enough for my power wheelchair. A couple of strong, tenacious young men came to my rescue, however, and successfully parallel parked the chair in the tiny space and I was banquet bound. 

As I exited the lift and came into the dining room, Janice and Colleen by my side, it didn't take long to spot the table where a (very large) space was ready for me. All the usual suspects were there: in addition to Janice and Colleen  were Jannette, Brenda, Alice, Annie, and Arlowene.  Any self consciousness disappeared when I rolled up and took my place.

Several people came over to say hello but conversations were brief; my voice couldn't be heard over the crowd and my enunciation is terrible. Regardless, it was nice to see so many friends.

Prior to arriving, I asked Janice if she would be my voice and thank the club for the ramp. She did a lovely job, much better than I would have, with or without my impediment.  The man who was honored as the club's volunteer of the year (and who did most of the work on the ramp) came over after the program and I thanked him personally for his kindness.

You know, I am surrounded by kind, goodhearted people. I am so lucky.

Ballet de dent

It finally happened. Despite my best efforts, I can't hold onto my toothbrush well enough to give my teeth a good scrubbing. I'm not prepared just yet to bring a trois into our little pas de deux, so I need to be creative. I'm choreographing a possible new step. ..I'll let you know.

If wishes were horses...

It's late, after  11, and my eyes are burning. The dry heat floating out of the vents doesn't  help. As well, my day began earlier than usual and included  a movie outing (thanks, Julie!).  It's no surprise my eyes are tired.

I wish I could still rub them.  Make a fist and press the knuckle of the first finger onto the lid and massage away  the tired, the burn... such a small thing, really, but sorely missed.

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Lucky number

Yesterday was clinic day. Ready for an update? Of course you are.

First stop was pulmonology, where I usually get my FVC tested. Not this time. Just blood oxygen and blood pressure, both of which weren't terrible. Following a discussion about my favorite subjects (saliva and more saliva), the nice doctor wrote an order for a suction machine, complete with a Yankauer suction tip.  Don't worry, I promise not to post any pictures of actual  Yankauering.

On to neurology and the rest of the team. Nothing out of the ordinary...EXCEPT for my weight.

SOMEHOW I managed to lose 13 pounds. I know this isn't necessarily a good thing -- remember, fat is good for ALS -- but I confess to being more than a little pleased.  I will follow the advice of my nutritionist (eat, snack, protein, protein, protein, etc.), but right now this 50-ish woman with AL-ass is remembering slimmer, better days.

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Isn't she lovely?

Not so very long ago, I composed and responded to email, wrote entertaining blog entries, did my banking and a hundred other things, all by myself using voice recognition software and the ring finger of my left hand. When dictating, the occasional background noises provided by a barking Bichon and/or a communicative cockatiel necessitated an expostulatory "SCRATCH THAT!" to erase their unwanted contributions. As my speech worsened, it wasn't the animals offering up the gibberish, it was moi. "SCRATCH THAT!" punctuated an increasing number of dictation attempts, until even "SCRATCH THAT!" was  transcribed as "congrats grads" or the like. Frustrated and impatient, I  resorted to my single functioning digit to make corrections and type an occasional blurb. It didn't take very long for  my shoulder and neck to point out the flaws in this arrangement: unable to  support the weight of my man-hand,my shoulder dropped it (finger and all) --not the most effective method of typing. Helpful surrogates came to my aid, but availability was a factor. I wondered aloud (in virtual print) what I needed to do to regain some -- any -- type-ability.

Enter the ALS Association AND their loan closet. Until I am evaluated by the National Rehabilitation Hospital and can get an Eyegaze System, I am happily -- if slowly -- using a borrowed SmartNav System. A piece of reflective tape affixed to the bridge of my glasses turns my head into a giant mouse, positioning the cursor over letter after letter on the on-screen keyboard produces a word, then a sentence, then a paragraph or two...or more.

Like any hand operated mouse, this tape/glasses /head mouse requires regular recalibration, but to do so I have to swing my head side to side, up and down.  I sort of look like Stevie Wonder. Sort of.