THE ODDS (Debbie Does ALS)



I don't even know where to begin, so I'll start at Bistro D'Oc. C Claire and I slogged through horrible traffic northbound and managed to get to DC only five minutes past our dinner reservation hour. As is her custom, C Claire ordered escargots. I ordered the special: homemade sausage with pommes frites. I enjoyed a kir Royale with my salad and was pleased with the looks of the meal I'd ordered. C Claire attempted to use the escargots tongs but, since I can no longer assist, abandoned them and used her fingers! All was well, the food was delicious. But then....I was trying to cut another piece of my sausage in that new, awkward way I have, when my knife slipped. My sausage flew smack onto the shoe of the man seated to my right and bounced under the seats. I gasped, he looked over, I apologized, he made nothing of it and went back to his wine. I stole a glance at his shoe and was horrified to see the sausage had left its mark!

Leaving the restaurant we headed over to the Verizon Center and the Wizards game. We got to our seats just at tip-off and saw the terrible start--it was painful to watch! Or was it? No, in fact, the pain was my stomach, reacting to dinner and being three days post-ablation. I will simply say I spent most of the first half in the ladies' room. When I finally returned to my seat I asked C Claire if it would be okay if we left; I got no argument from her there!

We had an uneventful ride over to National Harbor, where we were spending the night. The Westin is a lovely hotel and C Claire and I were very comfortable. The beds were so fluffy and soft and inviting, and the pillow was calling and my cheek felt very happy nestled in it...sleep was a luxurious experience that night!

This morning, Sunday, we woke up to gloom and rain, but it didn't matter. We were still warm and cozy and didn't have to rush anywhere. The Starbucks coffee in the room was fresh and fabulous; I read; Cecilia did some homework; we got cleaned up and packed our backpacks and called for our car at 11:41. Which they didn't get. We could see the car from our window. We were going to go down when we saw the car leave, but it never did. Heaving a bit of a frustrated sigh, I gathered us together and headed down to the lobby. The key was still in the cubby...they'd not even gotten the message to the valet parker. Realizing the view I had from our room was just a little ways up the street, C Claire and I thanked everyone and left. Much easier and quicker!

Kooza. A five-minute drive found us at the VIP parking lot and a short walk took us to the Tapis Rouge entrance. I was greeted with a mimosa, I was divested of my coat, C Claire and I had our picture taken. The rotating hors d'oeuvre stand, the "shrimp in spoon" stand, the tortellini stand--it was quite a feast! And the ambience of the whole room was wonderful.

But nothing, nothing nothing nothing, compares to that which is Kooza. Our seats were front and center and from start to finish it was a banquet for all the senses. I've never been so captivated, so entertained, so amused, so frightened! The dizzying feats by the acrobats, the beauty of the costumes and makeup, the whole afternoon was surreal and magical. I was like a small child, watching and holding my breath and gasping. Like a child, I was horribly disappointed when it was over. I'll never forget this. I hope C Claire enjoyed it even half as much as I did--I'm sure she did.

I hope I dream about Kooza tonight. I'm such a goofy little kid.


Coming up: A Magical Weekend

Today is day three and I am happy to report NO ill effects from Wednesday. I've not taken a single pain pill and feel completely normal. I'd run, except I was told not to and I do occasionally follow doctor's orders.

I've become quite the fatty. It's going to be worse after two weeks of sloth.

This afternoon C Claire and I are headed to DC for dinner at Bistro D'Oc, then a Wizards game. Eddie Jordan is gone, which is sad, but the team is the team and we'll be there in Section 107 cheering them on. After the game we head to National Harbor where we'll spend the night. Sunday we are going to Cirque de Soleil!! I feel like a little kid, I'm so excited about this! C Claire will bring her camera and we'll try to get some cool photos.

Having nothing more of any interest to offer, I will say good day. And good night. And good weekend.


Mark Cuban Wisdom

"...Is there any doubt that the next “bailout scandal” will be banks and other bailout recipients sponsoring Inauguration events or spending boatloads of money to attend ?

Note to PE Obama, have your staff scrub the sponsors list and look for the words “bank”, GM, Ford and Chrysler and then google all sponsors for the word “layoff”..

I cannot describe the rage I feel thinking that my taxpayer dollars, which ultimately fund all these unwise bailouts, will contribute to continued irresponsible spending on the part of these unchastened executives. Why, why, WHY are they still at the helm? Oh wait. I forgot. We did the same thing with our last president...


Happy Thanksgiving

I'm at Becky's, listening to music on my laptop, smelling the turkey that's been cooking since 11PM, feeling very content.

Yesterday's outpatient procedure went well. I was worried that something would go wrong and I'd come out of it with reduced function, but today all is well. I don't have any pain so won't need the painkillers, thank goodness. I don't like how they make me feel.

It was Thanksgiving last year when I told the girls about Louise. I remember the four of us huddled in a hug as we contemplated what my diagnosis meant for our family. Honestly, this time last year I was convinced I'd be in a different (translated: worse) state than I actually am today. Yeah, my hand function is worse, but IT STILL FUNCTIONS. I am so grateful, thankful, hopeful--odd to say that in the face of a disease like ALS, but I am. Every single day I am given is a gift and I am very cognizant of that gift--those gifts.

Happy Thanksgiving my dear ones. I love you with all my heart.


I'm having a moment.

It's cold in the house because the crew is here working so the heat is off. My whole body is cold but mostly my hands, which don't do so well under these conditions. I keep having to cup them together and blow on them. Since the guys are here, I am relegated to my room and I can't get comfortable because Cecilia is still asleep (yes, in my room, along with Flapper), and I am having difficulty scooching myself up on the pillow. My cold hands and dumb weak wrists and arms are plaguing me there. And my arms are twitching so much it's making me nuts.

I'm hungry and I can't eat. It's past 11 so I can't drink.

I'm a little scared about The Procedure, even though I know it'll be fine. Thoughts of not being able to move my arms or hands, falling, suffering any sort of worsened progression, haunt me.

I read a few posts on the PLM site about my "friends" who have a) choked and b) fallen. When I read about them it breaks my heart. One of the posts was titled "My world changed again today." I wanted to cry.

My good glasses broke.

I suffered a disappointment that is making me very sad.

Sometimes it is very hard to keep a smile on this stupid old face.

I'm just pitiful.


Ya gotta love Mother Nature. Today is the day of The Procedure and good old Mother Nature has decided to get one last jab in, just for good measure. It won't change anything, it's simply amusing.

I've just come back from a final run and I'm drinking clear liquids. I won't be able to run for two weeks. My running has been so slow I might not notice!


Monday, Monday, so good to me

I'm sitting here, trying to decide on a catchy opening sentence. My hands are resting on the keyboard. Idiot things keep twitching.

That's not quite the opening I'd planned, but it'll do. Twitchy hands are so interesting.

It was an eventful day. I woke up at 5 and checked email, met Lynne at 7 for breakfast. She went on her way and I stayed, wired and working at Panera, until I left for my pre-op. I met with Dr Walker (no, I didn't scare him this time with my hysteria); had my blood drawn; pre-registered for Wednesday; and had an EKG. I guess my heart was fine...I haven't heard any discouraging words. As always, I am struck by the absurdity of being so friggin' healthy, except for Louise. The lab technician commented on my nice dark iron-rich blood.

While I was waiting for all these different appointments, I got an email from FLS Reporter Cathy Dyson. She was contacted by Yaron Deskalo, a producer for ESPN's E:60 show. He'd read her article and wrote, "I think her story about defying the odds and pushing to the end is important for our viewers to hear." Being the camera whore I am, and--more seriously--having an opportunity to increase ALS awareness, I contacted him. He called me as I was driving home, listened to all my drivel, and said he was going to try to sell it to the ESPN powers that be. I don't know what will come of it, but it'd be so cool if it came to pass.

I've said there is a responsibility that goes along with Louise, and that is to show a good face, a courageous face, a determined face. Whether I'm talking to a reporter, or talking to my children, or talking to myself (yeah, sometimes I do), I need to show that the disease may take my muscles, may rob me of my mobility, may deny me the ability to speak or swallow or even breathe, but it will not take away me. I am stronger than Louise in that regard.

ANYWAY, tomorrow is a regular work day and then The Procedure and Thanksgiving. I know I'll be giving thanks for so much--too much to list here. But you know me, and you know I am grateful for slow progression and good health, but mostly you. I don't know how I'd make it without you.


Today's take away

Looking ahead, years and years from now, to a time when I am not running, I want to remember today.

Lynne, Nell and I met at the battlefield for an hour run. I brought my iPod to change things up a bit. We were almost halfway into the run, Lynne and Nell well ahead of me, when I was overcome with the gift that the day was. At that moment one of my favorite Zydeco bands came on--a happy, lively little tune--and I couldn't help myself; I ran a little faster, I looked around at the clear day and the shining sun and my friends and was very well aware that, despite dumb ol' Louise, I was still outside, running, breathing, living. I almost cried with the joy I felt.


Heaven, I'm in Heaven...

My feet hurt. While I was standing in the shower I realized they still hurt from this morning's run. It's mostly just plain old hurtin' from running two hours, with a dash of plantar fasciitis.

What I wish right this minute is that I could have someone rub my feet for HOURS, from toe to heel, hitting all the spots that are troublesome. Ahhhh, wouldn't that be heavenly?

Speaking of heavenly, two items:

I had my car serviced today ($$$$$$) and the service manager, Mike, stopped to talk with me. Seems he read The Articles and was inspired. We chatted for a bit and he (don't laugh) asked me if I would consider speaking at his church, on the topic "live each day as if it were your last." I am flattered; don't know how well I'll do, but I agreed. Gulp!

I bought a little goodie for the Serenity Room!

Oooh, I'm feeling cozy already! Now, if only I had a foot person, I'd be all set.

Cold Running --yay!

Twenty degrees and sunny, what a fabulous morning for a run. Clicked off two hours and change, and confess to feeling it after a buck forty-five. No worries, haven't been doing too much weekday running and my weekend running has been spotty since NY. Back on track now. But I won't run over two hours or so anymore anyway, just because.

One of the things I pondered during my run (when I was not hearing that stupid Chicken Dance song in my head, thanks a bunch, Tam!) was this: The muscles I break down don't rebuild, so no more hard running. But don't my muscles break down no matter what? If I'm walking across the office? Walking in the grocery store? I know it's not at the same level, but still.

Just wondering.


Chez Chaise

I am starting to be impatient about the house. I just want it done so I can put my house back in its usual state of (dis)order. I also want to get the carpet for downstairs so I can use my serenity room.

One item of furniture I'd like to put in the room is a chaise lounge. And not just ANY chaise lounge, I want a ZEBRA chaise lounge, to wit:

I'm not overly crazy about this one, but it is almost affordable, if I give up food.

I'd have to give up food and my meds for this one. It would be worth it.

This one is just for show. I really can't even afford to look at it.

Another option would be a red chaise with a zebra throw. I like that idea, too.

An electric fireplace is also on the list. No TV, just a docking station for my iPod. I can see myself, chaise lounging, iPodding, being serene. Aaaahhhhh....


Stupid boots

Thanks, Kendall. Maybe today was just a fluke, maybe I'll be able to put my boots on by myself next time. But today I couldn't and you helped me.

Thank you.


Taking Note

I was re-reading an earlier post where I described the condition of my right hand. It is from February. Last February my right pinky had seceded and the ring finger was following.

Today, nine months later, all the fingers stand separate. There's no muscle at all in my thumb, which curls in even when I knead and massage it. For that matter, all my right hand fingers curl, even when massaged. The lower knuckle of my pinky is sensitive and sore and has been for about a month. I cannot touch my right thumb to my pinky.

I am writing this because it's important to note what has happened in nine months' time.

I mentioned in a recent post that my left hand is beginning to undergo changes; the pinky and, to an extent, the ring finger are separating. I still have muscle in my thumb but I see the atrophy which is beginning between the thumb and forefinger. I can still touch my thumb to my pinky.

So. It's November now. Nine months from now it will be August. I wonder if my left hand will mimic the progression of the right. And I wonder where the right will be then.


Richmond Recap

Today was a very memorable day. It was Becky's first half marathon, it was Melanie's first half marathon, it was John Wallace's first marathon, and it was Lynne's 30th marathon. Tam also did the full; Kendall, Keri and Meghan also ran the half, oh! it was a first for Meghan, too. Just so I don't leave anyone out, bright and shiny Thull was there (and was soundly beaten by his daughter Jennifer).

Becky had predicted she'd do a 2:10. Her longest training run was last weekend--she did 10 miles. Melanie's longest distance was 5! They started together and stayed together the entire race. Not talking much, but strengthened by the presence of the other. They finished together with a chip time of 2:07!!!!!!! I am so pleased for them both and I am SO PROUD of my daughter.

Kendall did a better time than at the National Half, despite the foul temperature. I hope she is aware of how strong a runner she is, and how much potential she has.

John Wallace did so well for his first marathon! He's sore now, and will be for a few days, but he earned it. He worked hard and I am totally impressed with him.

So. Lynne's 30th marathon. She said it was tough on her for at least ten reasons, and we came up with two more during the post-race analysis. She and Tam define strength and persistence. It was much warmer than is typical for Richmond and they were still recovering from the "marathon+" they'd run two weeks ago. Lynne actually called me at mile 22. She borrowed someone's phone, said she had to hear my voice. This broke my heart in several million places. I wished I'd had the means to fly to her side, pull her through this tough spot, get her back on track.

Post-race she pointed out this is the first race I haven't at least been somewhere on the course--more pieces of broken heart. FORTUNATELY bright and shiny Thull was there so I said she'd have to run with him going forward. Inside, though, my heart was still breaking. It broke some more in the car on the way home when she said she hated ALS.

I hate ALS, too. I hate it so much.


Stem Cells

This is interesting.

Stem Cells From Lou Gehrig’s Patients Hold Secrets to the Disease

Scientists turn skin cells into stem cells (left), and then into neurons (right), and now wait for them to die. <br>[Credit: Left-NIH, Right-Arnaud333]

Scientists turn skin cells into stem cells (left), and then into neurons (right), and now wait for them to die.
[Credit: Left-NIH, Right-Arnaud333]

Geneticists hope their stem cell research will find new drugs against this debilitating disease.

By Carina Storrs, posted November 14th, 2008.

Scientists have achieved the tricky task of transforming skin cells from Lou Gehrig's disease patients into stem cells. This breakthrough may speed the search for a cure for Lou Gehrig's disease, which slowly and inexorably destroys nerve cells. Using the stem cells, researchers can observe the progression of the disease replayed in a Petri dish and test a battery of experimental drugs aimed at halting nerve cell death.

This development will soon allow scientists to examine the events that cause nerve cells to die, says Dr. Robert Brown at the University of Massachusetts Medical School. Brown has studied neuromuscular diseases for about 30 years but was not involved in the study.

Lou Gehrig's disease, also known as Amyotrophic Lateral Sclerosis or ALS afflicts about 5,000 new people every year in the United States. It kills 90 percent of them within five years of diagnosis. ALS patients gradually lose the ability to walk, eat and even breathe as the nerve cells that control muscle activity, called motor neurons, waste away. The genes that are associated with Lou Gehrig's disease are only known for 10 percent of all cases.

Until now, the only window into the role genetics plays in the disease's progression was a breed of lab mouse that develops ALS. In the mouse model of ALS, a single gene is responsible for the disease. In humans, a similar gene is thought to be responsible for only about one percent of ALS cases.

To create a better model for understanding ALS, researchers at Harvard and Columbia Universities took cells from the skin of about 20 ALS patients and reprogrammed them into stem cells. Like embryonic stem cells, reprogrammed stem cells have the ability to become any cell in the human body.

"It's actually quite difficult, but for almost every patient who's given us a skin biopsy, we have been able to reprogram their cells [into stem cells]," says John Dimos, the lead author on the study recently published in the journal Science. Dimos is now a senior scientist at iZumi Bio, a biotechnology company in Mountain View, Calif.

Next, the researchers stimulated the stem cells with small molecules and turned them into motor neurons, the cells affected by ALS. Each patient's batch of motor neurons carries a unique genetic profile that is responsible for ALS.

The researchers hope to study ALS in the context of these different genetic profiles. They do not know how different genes associated with ALS might influence events inside the cells that cause them to die. But, by using this system, they can start to examine what goes wrong inside the motor neurons as they age from the earliest stages. Depending on what they observe, they can choose drugs from the thousands of potential candidates and screen them against the stem cell-derived neurons for ones that prevent them from dying.

However, even before researchers can start looking for new therapeutics that ameliorate ALS, the scientists must confirm that the reprogrammed motor neurons deteriorate under laboratory conditions like they do in the bodies of ALS patients. "The disease can take 35 to 40 years to develop in patients, which is not useful," notes study collaborator Hynek Wichterle of Columbia University's Center for Neurobiology and Behavior. To make the process a valuable tool for lab researchers, they hope to see cell death within days, he says. Previous work from the teams at Harvard and Columbia suggests several molecules can accelerate the motor neuron death seen in the disease, offering shortcuts for the researchers.

The ultimate goal of the stem cell research plan by Dimos and his collaborators is to create healthy motor neurons in a Petri dish that doctors can put back into the ALS patient. "That's a long, long ways away, and I think it would be cruelly misleading to suggest anything else," says Dr. Robert Brown at the University of Massachusetts Medical School. Experts are quick to point out that many obstacles remain, like ensuring that the transformed cells remain motor neurons.

In addition, while the ALS system appears to be a breakthrough, the scientists still think it leaves room for improvement. "This system is Version 1.0," cautions Kevin Eggan of the Harvard Stem Cell Institute, who oversaw the study. His immediate goal is to determine how the induced stem cells created artificially from skin cells differ from embryonic stem cells that occur naturally in the body.

As the technique improves, Brown predicts that the induced stem cell system will allow researchers to make great strides forward in the study of other brain diseases like Alzheimer's and Parkinson's, as well as degenerative muscle, heart and liver diseases. "It's almost as big as human biology itself. It's such a huge area now, with so much explosive growth," he says.
Related on Scienceline:

Visit stem cell scientist Hynek Wichterle's lab.

A new way to make stem cells.

Chimera controversy: mixing species together for better stem cells.

Quite a breakthrough, yes? The trouble with articles like this is that they make me the beginning. As I near the end the cold, harsh reality sets in that this is just the first, tiny baby step and there is a long way to go. I hope their research and application is speedier than my progression.


More Bailout News

I paid $1.89 for gas today. Won't be long before those ol' oil companies, led by poor W and his friends, come knocking on Uncle Sam's door.

Today was ultrasound day. Sorry, no pictures, they don't give you pictures of just plain empty uteri. Anyway, I had to have two types: external and INTERNAL. I tried to imagine what the probe was going to look like, but when the technician, Ashley, showed me I about died. I looked at her and said, "You know, it looks like..." -- she interrupted me to tell me she'd heard it before.

Ladies (and the couple of men I know read this), we really do have to suffer quite a lot of indignity being women. I will not go into detail, I doubt it's necessary. Suffice it to say I am glad I won't be doing that again. I hope.

So now the preapproval stuff required by the insurance company is done. Next step is the pre-op visit, then the deed. I can't tell you how I am looking forward to it. It never ceases to amaze me that I am in such good health in every way but one. Oh, Irony.

Matt comes in tomorrow as there are some transition issues to deal with. It'll be good to see him.

I wonder what gas will cost this weekend?


Ranting Like a Madwoman

Posted a new commercial by the ALS Association in Canada. It's rough, so beware.

Now. The promised rant.

When I'm driving home I occasionally have some very wicked ideas. One of these is the fantasy that, when I'm nearing the time when I won't be driving much anymore--or at all--it would be nice to bump into the following vehicles, knowing it won't matter:
  • Cars bearing any sticker that says "W" or "Bush Cheney" or "McCain Palin". Palin. What the hell was THAT all about anyway?
  • Cars bearing any form of the confederate flag (yes, lower case, on purpose), or stickers that say "Heritage not Hate". Idiots. It's a heritage based on hate.
  • Cars with two or more "ribbon" magnets (one is bad enough) UNLESS the ribbons are about autism or ALS (self serving? yes. so what.)
  • Hummers with yellow ribbons. The stupid war is about the stupid oil you put in your stupid gas guzzler so stop with the stupid hypocrisy. It's the ultimate disrespect to those men and women serving our country.
  • Cars (or, as is more typical pickup trucks) with stickers relating to GRITS. Assholes.
  • Any vehicle with testicles dangling from the trailer hitch.
There are more, which I'll add when I can remember them. I welcome any additions to the list.

Not that I can bump into them, which I'd like, but what's up with the stupid car makers looking for a handout? They should be going to the fucking oil companies with their outstretched hands, not the US taxpayer. Fuck all those SUV producing no consequences to the executives car companies. They can go to hell. Grousing about producing cars that meet a minimum CAFE standard and now this. Fuck 'em all. Of course, with oil at under $58/barrel today, the oil companies are going to cry poor and will probably come looking for a handout, too, since they'll only be making $4 zillion in profits instead of $5 zillion.

And finally, I have heard there are jokes circulating about the new President, jokes that are racial in nature. I beg all those who would hear them NOT to repeat them and to accord the same respect to the incoming President that was accorded the outgoing President. You don't have to like him, you don't have to agree with him. But please, PLEASE do not become part of a larger problem by repeating a joke that may seem funny but is rooted in hate. Do not propagate ignorance.

Yeah, I'm on a tear. I'm fed up.

Good night.


Poor, poor Dr Walker. And poor, poor me.

Biopsies of the uterus HURT. I hate my annual pap test because of the pain and this was about a million times worse. Fortunately, because I had the biopsy, I don't have to have the pap. Whew, what a relief.

Scary note: during the lighthearted chatter following the biopsy, Dr Walker bent over and wiped up something off the floor. I freaked and said "was that ME??!!?!?!?!?!" to which kind, terrified Dr Walker said not to worry, it was only Betadine. I'm still not sure I'm convinced. And I'm pretty sure I scarred Dr Walker for life.

Happy note: BP was 108/68. Not the sky-high reading I always get at the idiot clinic.

I have my ultrasound Wednesday, painless except for the discomfort of a full bladder. I just hope I don't embarrass myself.

Okay, enough TMI talk.

Today brought another Matt-transition. He's cleaning some things up on his end and one of those things is his google calendar, which I USED to have rights to. No more. I got an automatically generated email advising me and I started to cry. How stupid was that? But it breaks my heart and for some reason I'm not adapting very well. As I've said ad nauseum, I am tired of having to fucking adapt to stuff. Isn't the goddamn disease enough? Sigh. I guess not. And I know everything happens for a reason, but c'mon.

I know. Get over it, right? Yeah, well, I'm having a hard time with this one and I am permitting myself a good wallow. I may show a good face at work but I don't have to here.

House update:
It's cold outside. I realized the value of my new doors and windows the minute I walked into the house. The heat wasn't even on and it was toasty.

Little Gifts from Louise

For the past four days my right middle finger has been spasming in toward my hand. It's not constant, but consistent, occurring either with rapid-fire repetitiveness or single little blasts. It's a strong spasm and I feel it all the way down my forearm. Pretty weird. As I've said before, if I didn't know that it was ALS causing it, I'd even think it was sort of cool. And on one level it is amusing, and I find myself laughing. What's the alternative?

More to laugh about: I'm wearing sensible shoes, pregger pants, I'm driving a car that has a nice grippy steering wheel and a doorknob adapter on the gearshift, and the key, encased in foam tubing, sits in the cupholder.

Today I will have a biopsy, Wednesday an ultrasound, all because of the endometrial ablation that is scheduled for the 26th.

All these things are the result of my relationship with Louise. That stupid cow has changed my life, hasn't she.


Oooh la la, Momma's gonna look so fine!

New purchases: neoprene steering wheel cover (to improve grip); and new pants, suitable for work, that have an amazing stretchy waistband and no buttons or zipper. How did I come by these delightful pants? Why, in the maternity section at Target. Yes, you heard right. Muscle Tam had suggested this several days ago and so I checked it out. Gone are the days of pregger pants with those gross big old tummy panels, today's options are cut a little different and have a more flattering stretchiness. I'm going to get a pair of jeans, too, at Kohl's. It's nice having this avenue available to me. Thanks for the fabulous idea, Tam!!!

Went to the November support group meeting today with Muscle Lynne. I actually enjoy these sessions now and derive great benefit from them. And the other PALS-- today these were Michael, Pat, Larry, Karen, Kyle--and their spouses and friends are SO wonderful. Karen, who I met for the first time today, said she'd had a feeling similar to mine her first time at a support group meeting: she wasn't ready for it. She is in a chair now, can't walk at all. She was diagnosed four months before I was. The stories she and her husband told us had everyone laughing, seems she's ready for it now.

Time for bed. I'm unaccountably tired this evening.


Post Race Saturday

Had an unusual, unwelcome experience today.

I have become accustomed to the spasms and cramping in my fingers, hands, arms. And in my toes, feet and legs. I had one NECK spasm a while back, an isolated incident.

Today I had a spasm in my left ribcage area. I know these for what they are, so I won't pretend it's something else. But shit. I hope it, too, is an isolated incident.

I ran this morning, first time since the race. It wasn't as cold as I'd hoped but cold enough we had to go back for a glove for my right hand. Lynne and Janice, those speedy girls, would run ahead and come back for me. I'm glad Lynne has other people to run with, who can run at her pace. She's a dear to come back for me but I am not her equal anymore and she really needs Janice, Tiffany, Cathie, Nell and Tam. They, however, will have to defer to me for the after run beverage--there is where I can still give Lynne a run for her money!

Anyway, legs are tired but okay, and we will run again tomorrow. And next week. And next month. And next year.


I just added a sidebar link to a CNN interview with my friend, Thom Cuddy, a vet who also has ALS. Make sure to watch it. He's had ALS for more than five years--he's been a slow progressor, too. Good man.




I'm playing with a new look here. Feedback appreciated.

Hey, it's a distraction.


Number 26

Well. It's Monday night. What a weekend.

Lynne and I arrived in New York before 2PM Friday and were in our hotel room before 2:30. We checked out the neighborhood and wandered into a bar for a few drinks. Early to bed Friday night!

Saturday, woke up and got ready to head to the expo. Our original plans to meet Adam there at 9 didn't happen, we got to the Jacob Javits Center near 10AM instead. (Interesting note: Jacob Javits died of ALS.) We checked in and headed over to pick up our bibs; Lynne to the 33000 stall and I to the 35000 stall. Just about the same time we both discovered our bib numbers had been changed due to our new VIP status. The new and improved bibs were located and off we went to get our t-shirts and stuff-in-a-bag-that-we-almost-always-throw-away. We shopped a bit at the expo; Lynne found a nice hoodie that had been marked down to $30 so she snagged it. We were finishing up when we heard from Adam. He met us and we walked toward Penn Station to grab lunch and meet Jeff (Adam's dad). Adam's tres cool friend Aric joined us and we had a wonderful meal and sinfully delicious pumpkin pie! Jeff arrived just as we were ready to go so we parted and went on to wait for Tam. Sitting on the steps of the Post Office building was a great place to rest while we waited and I was starting to feel tired. When Tam showed up we walked back toward the Javits Center; once there I grabbed a cab back to the hotel while Lynne stayed with Tam. Lynne was miffed to see that the $30 hoodie had been marked down to $20 in the short time since she'd purchased hers!

I put my feet up for a bit, and at 3PM heard from Adam that he and Jeff were on their way over. Lynne and Tam were headed back, and Tom and Cathy were coming over, too! I'd arranged with the reporter from NYU to meet us at 4, so the timing was perfect. We all walked over to the bar across the street and met Nuzhat (NYU), who found us to be a jovial and entertaining bunch. It was a hoot having my friends around. At one point during the interview, however, I caught
sight of Adam crying, and then noticed Cathy was wiping her eyes, too.

Sometimes I forget that my friends are affected by this. It breaks my heart that it causes them pain.

Sigh. So. Interview over, Lynne and I headed over to go to Mass. We concluded that the homily was probably very lovely, if we'd been able to understand the priest who had an unbelievably thick and heavy maybe-French accent. Hard to tell. Next to a nearby Uno's for a pasta dinner, then an early bedtime. Tam was staying with us and got to bunk with Lynne. It seems that, while Lynne and I travel well together, it's because we are oblivious to each other's idiosyncracies. Tam said she didn't sleep well because a) Lynne made whistley noises in her sleep, b) I snored, c) it was cold (we like a cold room), and d) she kept losing the covers. It seems Lynne would push off the covers and Tam was left with just a little corner. I'm still laughing about Tam's description of her night from hell!

We got dressed, packed our gear, grabbed a cab, and headed to the VIP bus. Found it, boarded, headed to Staten Island and the VIP tent. We wondered, since Adam and Jeff had managed to snag VIP accommodations courtesy of the Food Emporium Sweepstakes, if their tent would be anywhere near ours. Anyway, we arrived and were herded into the very nice and warm tent, complete with chairs and breakfast and coffee. We got comfortable, had breakfast, and were enjoying being warm! At the two NYC marathons I'd run before, the temperature had been moderate enough a warm tent wasn't necessary. This day, however, we were so lucky to have this luxury! I had to go out to the porta-johns a couple times and it was COLD and I saw people huddled against trees and each other. Not long after we'd finished eating we saw another herd of people coming into the tent--including Adam and Jeff! What a happy coincidence!

The "007" group, my group, was called. We said goodbye to Adam and Jeff, grabbed our bag, and followed our team leader. He and his crew used raised hands to keep the group together (a method we employed on the course). We deposited our bag and were led to the race start--Wave 1, with the professional men and other elite athletes. What a riot!

Lynne and Tam had decided they were going to stay with me, despite my objections. Since I clearly am not the boss of either of them, I relented. The gun went off and there was the Verrazano Narrows bridge, in all its windy uphilliness, welcoming us. I had planned on walking this first mile and did, but sent Lynne and Tam on their way. It was too cold for them to walk and, since I was at the back of the first wave, I knew they'd be able to find me after I crested the hill. It was the oddest sensation being on that bridge, virtually all by myself. The previous two marathons I'd run with the crowds. This was peaceful, despite the wind and the cold. Don't get me wrong, I was grateful for the weather--this was my kind of day!

Caught up with Lynne and Tam and away we went. They'd get ahead of me but would keep me in sight and the raised hand signal worked like a charm, most of the time! I ran steady, conservatively, watched my step when there were grates and things. I walked the hills and when I felt tired. I spoke very little to keep my wind in check. When I needed water, my "muscles" were there. They opened my Gu. I had decided that, since they had decided to run this with me, I might as well use them. In hindsight, it really was the best decision. I never would have been able to reach around for my water bottle and opening Gu is sketchy. Just around mile 7 the NBC vehicle arrived and I was interviewed by David Willey. The marathon site has a link to the video--it's about 5 hours long and I'm at the 4 hour point and there is no way to efficiently fast-forward. I think it went well, Lynne and Tam were on camera, and I got to show my shirt.

At mile 11 we found Cathy and Tom, who were with Nuzhat. Some pictures were taken, well wishes given, and away we went. I was pretty tired but still doing okay and the weather was a gift! We crossed the half at about 2:45 (according to the clock). Oh, I should mention. This was the first marathon I'd ever run where I didn't turn on my chron or record my splits. I ran the walk clock, nothing else. It didn't matter.

Mile after mile clicked by and before I knew it we were at 21, 22, then 23. I don't remember exactly where we were but Tam and Lynne lost me. I'd seen one of them (I honestly don't remember now who) and had raised my hand. They nodded like they'd seen me. I was near the left side of the course and was looking right at Tam, who was looking back at Lynne. They were discussing who had seen me and where was I. I was waving my arms and calling to them but they were oblivious! They had no clue I'd run right up to them, crazy girls!

I should also mention that twice, three times if you count Tam's Gu-pack slide, women fell on the course near me. I told my "muscles" that it was Louise, aiming at me but missing. I was so worried about falling and I am so relieved I didn't.

So, 23. 24. 25. There were hills, walk breaks, fatigue breaks. When there were only 200 yards to go there was a hill. Walked it. With 100 yards to go and the finish line within spitting distance, I ran. I crossed my final finish line at 5:45. I broke into tears and sobbed deep sobs, but then stood up straight, turned around, and hugged Lynne and Tam. Without them I couldn't have done this, without them I would not be the runner I am, or was.

I won't bore you with the hell that was the finish route except to say that any elation was completely sucked out of us by the time we made it out. But we finally did, got to the hotel, where Cathy, Tom, Kendall, Dan and Maureen, and Nuzhat were waiting. More pictures, more interview, then it was up to the room to decompress. We had such fun telling all the stories, and I looked around and felt so lucky to have this in my life. After a time Dan and Maureen left, Cathy, Tom and Tam left, Adam arrived and the four of us went to dinner. Aric met us. Adam ordered Veuve Clicquot--such a treat! The food was good, the service was lacking, but it was nice. Goodbye to Adam and Aric then back to the room. This time poor Kendall had to bunk with me. She confirmed the awful truth, I am a snorer. Yuck. The poor thing, I hope it wasn't too terrible.

We had planned on getting up at 7 but were up at 5, breakfast by 6, and were out the door, in a cab, headed to Brooklyn to get Kendall's car. We left Brooklyn 830ish and had pretty decent traffic the whole way. I keep saying poor Kendall, but the dear girl was carting home two old ladies who were stiff and sore and prone to snoring and whistley noises and she was stuck with us! It was such a generous gesture on her part to drive us home, I can't begin to thank her adequately.

Now. Home. Time for meds and bed. Going to do my duty tomorrow and go vote, and will hope that Virginia votes blue for the first time in forever.

Sweet dreams.



I'm nervous about tomorrow. I'm at the hotel now, resting. Did quite a bit of walking this morning and I don't want to overdo. My legs have felt heavy today. Very likely the result of the extra Octoberfest Sam last night, but I have to remember Louise, too.

Tam and Lynne are at the expo, Adam and Jeff are on their way over, Cathy may be here, too. The reporter from NYU Livewire (?) will be here at 4. Such excitement!

I'm glad we get the extra hour tomorrow. I'll need it.

Oh! They're here. Bye!

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