THE ODDS (Debbie Does ALS)




For some reason it's always higher at clinic, 135+/80+. Runner me HATES getting a reading at clinic. I wonder, is it that I hate BEING at clinic for what it represents, which manifests itself in my blood pressure? By that reasoning, why do you suppose my blood pressure is so GOOD at the gynecologist? I've never been crazy about those visits, either.

On to other things.

We had a good meeting with Jannan least initially. The more C talked about what is going on in her world, the more agitated she became. Jannan observed that C has clearly defined ideas about how people and situations are supposed to be and, when they don't meet her expectations, boom. Cecilia listened with teenage attention, grunted acknowledgment, and we wrapped up.

The ride home was painful. I stopped at Wegman's and, as it was raining, I pulled into one of the many handicapped spaces. This resulted in tears and accusations that I was taking advantage; I relocated because she's right. I was being a big lazy butt. Anyway, went in and did my shopping and found a magazine she likes so I bought it, too. No good deed goes unpunished; the "spread" she'd been hoping to find wasn't there. Yep, more frustration. The ride home was painful. What? I already said that? Well, it bears repeating my darlings. I went home the very long way in the miserable, gloomy rain, feeling miserable and gloomy myself. Little Miss Sunshineblackholegirl was fetally positioned within her hoodie, having run the gamut of shrieks and moans and grunts. Silently, I pulled into the driveway and she, silently, helped me put my purse on my shoulder, gathered all the groceries, and unlocked the door. She'd worked back to her calm place.

She is managing some of her academic expectations right now, hopefully successfully. I'm staying out of it.

I wonder what my bp is right now?


Is that a key in your pocket?

Such a perfect day.

No alarm in the morning. Luxuriate in the warm, soft sheets. Open eyes and see that you have slept for nine hours -- mmmmmmm. The house is quiet. Gently (and happily, easily) roll out of bed and shuffle into the kitchen. While nibbling the chocolate croissant purchased from the European bakery, read a bit of the newspaper online.

Make the decision to go back to Pratt Park. It's later than usual but the weather is cool and the sun is shining and you realize you'd be a fool not to take advantage of such a gift. Because the Weather Channel advises that it is 42°, two longsleeved technicals are put on. Out the door you go. Upon arriving at the park you realize you have left your key fob back at the house; this is an inconvenience because it means you must carry your key, the key that is situated between two Allen wrenches and blue foam tubing. Oh well, it is only a minor inconvenience after all. IPod hooked on to the waistband and large key contraption tucked into the waistband and off you go, rejoicing in the warmth of the sun and the cool breeze and the strength in your legs.

You look down to ensure that your key is in place only to find that your shirt is covering the key, which is pointed outward from your belly and makes it look very much like you are VERY happy to be outside. So as not to frighten other passersby, the placement of the key is adjusted and the shirt is tucked in. Better to have an odd key contraption jutting from your waistband than to have people think you are a sketchy tranny wandering the park.

Shortly after you begin the second lap you decide to try to run, an excellent decision as it happens. The wearing of two shirts, however, was not such an excellent decision and before you finish the lap you realize the outer shirt must come off. As you are incapable of performing this task on your own you espy an unsuspecting fellow runner stopped at a bench drinking her water and beg her assistance. She kindly complies and speeds off before another request can be made. Unburdened by the second shirt, the third lap is much enjoyed. Running in shade and downhill, walking the rest of the time -- lap number three flies by and a fourth lap is considered. Since you feel so strong you go for it and feel good the entire time. Where is this energy coming from? The extra sleep? The chocolate croissant? The single shirt? The 3.3 miles done two days earlier?

A question forms in your mind: do you get tired because you run so little, or do you run so little because you get tired? Perhaps more time outdoors is what's needed.


I am going to make a firm commitment to get out as often as I can. The beautiful thing about the winter is that it is not necessary to go out at the crack of dawn.

I hope everyone else is having as beautiful a day as am I.

Glad I'm not on the road!


Oh my

Dear Beloved Wizards,

Please. Pick it up. You are my team, for better or worse, but please do not test my loyalty. Where were you tonight?

A Fan

More things I love...

I love my serenity room. And turkey sandwiches with brie. Biographies of Elizabeth I. And Noche. If I could, I'd drink a glass (or more) every day for the rest of my life.


Well, let's be honest. FREQUENTLY. When I'm sitting for a long period or lying in bed, it seems as though I can feel myself getting weaker. It may be that my arm isn't strong enough to hit the alarm or it's too hard to pull up the sheet, or I sense my quad isn't up to the task of getting me to a standing position. That's why each time I get out of bed on my own, get up out of a chair or alight from my car, do all the little things I am still able to do, I smile and say a quiet "thank you."


Sparkly Friday

I hope everyone had an enjoyable Thanksgiving day; mine was spent at Becky's where I was very comfortable. All my daughters have become such lovely women and it is a joy to watch them.

Louise did not interfere too much, largely due to the fact that everyone took very good care of me. The only glitch was when I had to use the restroom; after washing my hands I was not able to turn the door knob because my hands were slippery. Fortunately Jenny had kept an eye on my progress and came to the rescue.

And today--what an incredibly beautiful morning. After yesterday's fog and rain and overall dreariness, this morning was a sparkling, bright diamond. The air was crisp and clean and a delight to breathe, the perfect conditions for a walk at Pratt Park.

Items of note:
The crazy old man pulled in just after I did but I never encountered him at all--what a relief.
I realized during the second lap that a visit to the restroom was in order and I made it in time.
I met two runners going the opposite direction and remembered how it felt to run and talk at the same time.
And, while it was not pretty or for any long duration, I ran, too. I got tired quickly but, after a rest, I did it again. Another one of the park regulars stopped me and asked how I was getting along and I told him I was trying to run while I could. He told me he couldn't run and that he missed it; I told him I didn't want to miss it quite yet and went on my way.

It occurs to me I have not written about running in a long time. Shame on me. With this fine weather I am going to make sure I take advantage of every opportunity.

Another thanksgiving day, yes?


This and that

Bumper sticker sighting: "Evolution is Science Fiction" side-by-side with "Veterans for McDonnell". Yep, I know what you're thinking.


The biryani turned out moderately well. I would give it a 2.5 out of 5 for presentation, and a 5 out of 5 for taste. I seem to be the only one at home who enjoys it -- that just means that much more for me.


It's been a good week and odd days for Miss C. Last night there was a hint of irritation evident when I asked her for some help; I told a friend it was like a light bulb went off and a punch in the stomach at the same time. I really hate that Louise is part of Cecilia's life and I want to minimize the impact as much as I can. Sweet Jenny has offered to be more available in the evening to help help. I hate that she is impacted by this as well but she is older and is better able to manage and cope.


A long time friend and running buddy has offered me a stair lift that her mother used. I don't quite need it yet but, trying to be proactive, I am arranging to have it installed. The husband of one of my muscles is going to do the heavy lifting. I am very, very, VERY fortunate to have such amazing friends.

I don't know exactly what it looks like, but this will give you an idea:

Oy fucking vey. Would you ever have thought it?


This past Saturday I went for a 3.3 mile walk. I am a total machine. The cold weather was a gift but it did bother my hands -- I'm going to have to get some mittens that are easy to put on.


I'm very much looking forward to Thanksgiving at Becky's. She always manages to host a lovely dinner for any number of people; the count last year was, I believe, 18! We are down to a very modest 10 this year.


I'm sure everyone remembers how I went on about a zebra chaise lounge
for the serenity room. As such a luxurious piece of furniture is out of my price range, I have (quite happily) settled in with a cozy leather loveseat and chair (gotten from the aforementioned muscle). The zebra, however, has not been forgotten. In keeping with my budget I have purchased a delightful new piece of lingerie, to be known as the zee-bra. Alas, there is no graphic. But imagine, if you can, yours truly lounging contentedly in the serenity room dressed in such finery. Yes, it is dizzying, isn't it?


That is all I have for now. Happy Thanksgiving, my sweets.



Shall emerge soon.


Quelques choses

Things that drive me crazy:
  • I can't scratch behind my right shoulder*
  • I can't put on or take off my coat
  • Stupid drivers
  • Craving a food I can't make**
(This is just tonight -- the list is much longer)

To sort of balance the crazy things, let me tell you about things that I love:
  • Cecilia's report card (five As and two Bs) (the two Bs are in AP classes) (so they are weighted)***
  • My Honda dealership and the two Mikes****
  • Paris*****
  • Veuve Clicquot*****
  • Terps and Wizards basketball*****
  • My Mac*****
(This, too, is a short list. I happen to love very many things, and people, and animals.)

*My shoulder has been making me crazy today. It's actually been making me nuts for about three days but today I went from nuts to crazy.
**I am craving biryani in the worst way. If I can enlist the help of a daughter or a friend this weekend, I will make pounds and pounds.
***She enchants me, amazes me, brings me to tears.
****I pulled into my Honda dealership at 6:30 PM; Mike 1 and Mike 2 were both on hand to greet me. I was given a ride home and they will pick me up when my car is ready.
*****No explanation necessary.


(Tentative sigh of relief)

Better today. Good meeting with Jannan. I really think she will be helpful in guiding C Claire toward more self sufficiency. As all the suggestions made by the mother-person are immediately rejected, it is to be hoped a disinterested third party will have more success.

To be continued.



Today is more of the same. It is as though we are on a never ending meltdown. Shrieking in the parking lot at the mall that she did not know why she was on this earth. I told her she had purpose, she said she did not, that she was of no help to anyone. I said she was a help to me. She reminded me that I won't be around much longer...

Talk of suicide, hurting herself. Irrational demands. I don't know what to do anymore. One thing I have done is schedule an emergency appointment with the therapist.

Later: some calm has been restored but there are eggshells all over the minefield. I'm afraid to move.


One forty seven

One thing that makes being a spectator bearable is seeing one's daughter, strong and smiling, crossing the finish line at her target time (a full 20 minutes faster than last year). Congratulations on a fabulous half, my sweet.


Two years ago...

I ran the Richmond Marathon, coming in at 4:19 (my second best time). As evidenced by the gloves it must've been a fabulously chilly morning, perfect for a race. I'd learned of my dx only a few weeks before.

Tomorrow is the 2009 race. Becky is running the half (along with bandit John), as is Ricardo. Lynne, Janice, Jenna and Jannette (and doubtless some whose names begin with other letters of the alphabet) are running the full. It's supposed to be good weather, thank heaven.

I suppose there will come a time when I won't feel pangs of sadness. Until then, I will plaster a smile on my face. Or blow kisses.

ISO: Calm

Sitting on a beach, drinking a fruity drink with an umbrella in it, totally alone. That is where I wish I could be right now.

It was another difficult night with my sweet girl. We seem to be going through quite a rough patch these days. I won't burden you with all the details because, honestly, it's just more of the same. It is at the point, however, where I have neither the creativity nor the energy to find effective solutions. These sessions beat me down and leave me feeling frustrated, angry, exhausted. It is up to me to be a rock; something she can hold on to as she makes her way through the troubled waters of her episodes. I don't always do such a great job and in that regard I feel as though I'm failing her.

Hopefully the meetings with the therapist will prove beneficial despite C's seeming unwillingness. Maybe she can provide some guidance for me as well.


From Justin

I hope I can get images from the 3T, too. In the meantime, do enjoy these lovely photos.


One more thing

The last couple of days I have noticed the middle toe of my right foot seems frozen in place. It is irritating to feel it pressed against the second toe. Unlike my left foot, I am unable to spread my toes apart on the right.

Bit by bit. Damnation.

Same again

The twitching, she is très apparent these last few days. Mostly in the bicep of the left arm, but everywhere else, too. And, more annoyingly, the left hand has begun increased cramping and finger spasming. The middle and ring fingers randomly jump and curl inward, often for several moments. At least that doesn't hurt, unlike when my pinky and the heel of my left hand decide to have a tantrum.

The right hand has been fairly quiet. The only interesting development is that the index finger no longer curls, rather, it points. All the time. When Mike noticed it during some ROM exercises on the right arm, he moved my arm a la John Travolta in Saturday Night Fever.

Yeah, Mike is a funny guy.

I am concerned that the heightened activity in the left hand is a portent. I mean, I KNOW I'm weaker--it's become a struggle to open the front office door--but does this signal a ramp up in the decline? Sigh. This is a ridiculous question and train of thought. The disease is progressive, after all. There is no point in worrying about it. Better to spend my energy and thoughts preparing for further adaptation.

I was up all night with a cough, the most recent iteration of this stupid cold. Naptime.


Bleah continued

I was hoping to go for a walk tomorrow morning, but I'm not sure it's going to happen. Probably won't make it to support group, either.

Another day of enforced rest won't hurt.

How far did the apple fall from this tree?

While sitting at a high school waiting for Cecilia to finish her SAT test, another mother in a PT cruiser came up next to me and rolled down her window.

PT: is the SAT test finished yet?
Me: no
PT: do you know when it is supposed to be over?
Me: no, I'm just waiting.
PT: have any kids come out yet?
Me: not yet.
PT: so it's not over yet?
Me: clearly not, we are all just waiting here and there are lots of cars still in the parking lot.
PT: my son said it would take about five hours (note: at this point it was four hours and 15 minutes into the test).
Me: I don't know, I'm just waiting.
PT: (stares at me, for what seems an eternity.)
Me: just sitting here waiting...
PT: (rolls up window, drives away)

I wonder what her son will get on his SAT. Perhaps he takes after his father.

Driving Miss Crazy

Making a U-turn these days requires a little planning on my part. The left arm does most of the heavy lifting, the right arm (as I've said before) is more of a placeholder.

Last night, Cecilia and I were leaving a restaurant in Central Park (which is not a park and is central to nothing) and, since Central Park is so poorly designed, I found myself having to make a U-turn in order to go home. There was quite a bit of oncoming traffic so I began my preparation: left hand/arm pulled down on the steering wheel while the right hand kept it in place. The car ahead of me went through at the first opportunity and I inched a little further ahead, turning the wheel just a little bit more. Finally I spotted an opening and took my foot off the clutch only to feel the front left tire begin to go over the curb of the median -- I had misjudged its location and had overprepared for the turn. For a brief moment I considered just driving over the curb but, not knowing how this might impact the undercarriage and realizing this would set a bad example for the new driver in the car with me, I elected to stay put. I corrected my positioning and waited for the next break. Fortunately my second attempt was successful.

This episode is in direct contrast to the U-turn I negotiated on October 7, when Adam, Ricardo, and I went to see David Sedaris. I had arrived in DC too early so I decided to park near the theater and bide my time catching up on e-mail. The spot I had chosen was easy (too easy, as it turned out) to find and I congratulated myself on being so lucky. As you can guess, I was in a no-rush-hour parking zone and it was, in fact, rush hour. The meter maid did not give me a ticket but told me I had to move, and advised that the spaces on the opposite side of the street were not rush-hour spots. The trouble was there were no spaces. As I made my way up the next block a car vacated a space on the non-rush-hour side. I knew if I circled the block this space would be gone so I, crazy fool that I am, made a snap decision and started a U-turn in the middle of the street, cars parked on either side, GW students everywhere. Remember my limitations -- this was not a smooth maneuver, I call it my 18-point U-turn. It was ugly and my arms worked hard, but I got the space. I didn't take out any students and I probably pissed off only a dozen or so drivers. The ultimate reward came after the performance when I walked the half block to my car and was already pointed in the proper direction for home.

For what it's worth, I try to avoid U-turns whenever possible. Driving, anyway.


How weird

Still sick. Just thought I would give you an update.

There were three voice messages on my phone tonight. One, I knew, had to do with the delivery of my new washing machine; the other two were mysteries. People rarely leave messages because I rarely listen -- I am more inclined to return a missed call. Anyway, since a message about the delivery of my washing machine is listen-worthy, I gave my voicemail a ring.

The first message was a total shock. I have not heard from this individual for more than a year -- the last time was when I was in New York City for the 2008 Marathon. At that time, he left me a message saying he had come to New York and wanted to see me, to support me at the race, I should call him at his hotel. I did not call, I deleted the message. This guy is one of those "negative energy" relationships I purged last year. Knowing that any conversation with him would be unsettling, I pressed "7" and deleted the message.

The other two messages were unremarkable; my washer will be delivered between 130 and 330 tomorrow afternoon.

It has also been more than a year since I received a communication from my brother. I suspect he is living comfortably with all his rationalizations.

I'm tired. Time for bed.

Better living through chemistry

My favorite cold medicine. Life is improving.

I did decide to work from home today, a very wise move on my part. Rolled out of bed at 7--the time I usually get to work--and was immediately grateful for the extra sleep.

At 8:00 AM it was time for my baclofen, the first of three for the day.

At 10:00 AM it was time for rilutek and lithium.

2 PM called for another baclofen. I'll have the last of these at 8 PM.

4 PM will be time for another cold tablet.

10 PM is the time for the second rilutek and lithium cocktail, along with my multivitamin and COQ 10 pill. I will not try to explain what COQ 10 does, but Justin mentioned it and said it couldn't hurt, so I added it to my regimen.

Look what I've become. One of those people who live by their pills. Pretty soon I'll have to get one of those pill organizers. I'll dye my hair blue and will take to wearing muumuus.



I am angry at every person I may have been in contact with in the last several days who exhibited even the slightest hint of illness (most notably the idiot cougher on the plane who never even PRETENDED to cover his mouth) because I. AM. SICK.

Scratchy throat, which alternates between swollen and irritated to swollen, very irritated, and painful. Runny nose. My eyes feel like someone poured dust into them. I don't even have a word to describe how my ears feel, but they are not happy. Nope, not happy at all.

An edict was issued at the office directing anyone who was sick to stay home. I do believe I will work from home tomorrow. I'll load up on echinacea and vitamin C, I'll sleep if (haha, when) the fatigue hits, and I'll not spread this vile crud any further.

I really feel like shit.

Notes to self

  • Stop fighting it. Just buy new pants.
  • Gett off my fatt butt and arrange to gett the stairliftt.


Debrief: Louise

This trip was great but verrry taxing. Methinks--no, meknows--there won't be any more to places that require so much walking or have stairs instead of escalators or elevators. I'm done.

I tripped going up the stairs at one of the tube stations. My right foot caught the step and I fell forward, landing on my left knee, elbow and pinky. It took several minutes to readjust, shift myself into a seated position, and (with Lynne's help) get back on my feet. Props to the kind Londoners who stopped to offer assistance.

Was this a true ALS fall? I think so. The fatigue I experienced after so much exertion (walking, sightseeing) surely impacted my ability to lift my foot sufficiently.

If I wanted to attempt another such excursion I would not be able to go without bringing a companion as the simple, everyday tasks we take for granted are difficult, even impossible: putting on and taking off a coat and other garments, using keys (including key cards, which are très difficile), not to mention shouldering a backpack.

So long independence.

Lynne was a champ and was always there to assist. She helped with everything, and I truly put our friendship to the test. As a gift to her I am going to keep out of her way for a while.

Anyway, we returned home Monday and today -- Wednesday -- I am still feeling pretty beat up. When we got off the plane my arms and legs felt so sketchy I was worried I would not be able to drive. Fortunately this was not the case, but the fatigue has stayed with me. I did not sleep well Monday or Tuesday night and tonight I am again up later than I had hoped. The only saving grace is the two hour nap I took earlier this evening.

Saturday I do not have anything at all planned. Well, yes I do: I am going to spend the day in my serenity room with my book and my iPod, and will give in to any drowsiness I feel at any time. With any luck Sunday will find me restored and rested, back on my game.


Home again.

Update is a work in progress. Short version: lovely trip, despite a few glitches. Stay tuned.

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