THE ODDS (Debbie Does ALS)


The Procedure

November 26. I'm giddy with anticipation!

More randomness

I'm excited about this weekend. At least I got cold weather for my last one!

Yesterday's mail contained cards from a few people I haven't heard from in eons. They'd read the article and were sending their greetings and prayers. As well, the reporter who wrote the article received a gift bag that was to be delivered to me. It contained a lovely letter and a gift that was very meaningful to the sender. I was struck by the goodness, the kindness of these people, that they would reach out like this.

So. Five days until the election. McCain is scary crazy and Palin is vapid window dressing. I hope the country comes out in force and puts Obama and Biden in office. How anyone can possibly think McPalin is the better choice is beyond me.

Way to go Phillies! My PT Mike and my PhedEx guy Tim are huge phans, so I am happy their team won the Series. (I'm sure Tim's dad had some inphluence!)

I woke up at 3AM and had a hard time moving my left--yes, LEFT--arm and hand. It felt as if there was a thin wire from shoulder to pinky that had been overworked. It scared me-is scaring me--because the left hand is cramping quite a bit today. Like just now. I need to make some important phone calls after I return from the race, to the acupuncturist (for acupuncture AND hopefully starfish), and the OTHER doctor for the endometrial ablation.

Until next time.....


This girl's going...

I ran my first marathon seven years ago. I quit smoking eight years ago.

Yay me.


I guess I knew...

About the left hand. My last several visits to the gas station have required assistance, and not just the gas pump incident I reported last week. I can still get the gas cap off, but I have a time of it getting it back on.

I'm still very lucky, though. Do I sound convincing? Convinced?

I'd give today a 2.

The local printing company, wonderful Jonathan and Company, agreed to print a single shirt for me even though it is not their practice. They also, so very kindly, did not charge me. Thank you, Jonathan and Company.

Itty bitty dream interpretation: The lab-coated woman with the knife is Louise. She goes for my left side, so far unaffected. Appears on the anniversary date of the diagnosis. I know this is way too simplistic, but it's in my gut (haha, no pun intended).

However, my left side is NOT unaffected. I have for some days--probably longer though I didn't acknowledge it--noticed the beginning of atrophy in my left hand. As well, the left hand pinky AND RING FINGER are starting to rebel. I find my left hand tiring much the same way the right hand did, especially when I'm driving.

This totally fucking sucks. Tossing aside the bright and perky coping attitude right now, I have to say I am scared and pissed and I feel helpless.

In the article there is a line that says I have "a condition that eventually will destroy [my] ability to walk and talk, eat and breathe." I've reread that a dozen times. I know this, I've known it from day one. I just don't think about it. I'm not denying it, I just don't have to deal with it now. Seeing it in virtual print was chilling.

Lots of bad juju in my head the last couple days. The one-year mark, stress over the race, etc. It's all building up.


365 Days

Please oh please oh please......


I had such an awful dream last night. I'd gone into a very sterile room and ordered a milkshake. The woman taking my order was wearing a lab coat, had short hair and glasses. She gave me my shake and I was in the act of putting it in my bag when the lid loosened. I saw that it was mint chocolate chip--which I don't care for. I said I wanted what I had ordered and this woman started raging and screaming at me. I don't remember what she was saying. She went to leave the room but, just before she left, she picked up a long, thin, razor sharp knife. Looking at me, she said "I'll be back for you."

When she was gone, I headed toward the door and tried to see if it was okay to get out. She walked past, stopped, and placed the tip of the knife on the left side of my abdomen. And pushed. Hard. I tried hard to scream, I kept searching for a sound. Finally I was able to make my voice loud enough to scream. Then I woke up. Creeped me out. It was 12:12AM.


Do you know what today is? One year ago today Dr Pulaski said "I think we are looking at ALS."

I can't believe it's already been a year. We've had a time of it, haven't we? I am grateful that I am progressing slowly. More than that, I am grateful for you and the strong love and support you have given me. You are my muscles.


Quest is quick!

The wonderful technician at Quest Labs in Ballston always gets my reports to my doctor so fast. I went in Wednesday and heard today. All the functions (liver, kidney) are fine, and my lithium level is .61. What great news for a Friday!

I hope you have a super weekend!

Of note.

The Euro as of 8:23AM was $1.26.

The British Pound was $1.56. $1.56!!!!

According to Accuweather:


Thank you, dear reader...

Look what was sent to me:

A snippet:

The owner of hotel "Hinoshima sou", Mr. Shigefumi Danshita (click!) taught us how to cook starfish.
It is so easy way to boil it in salty water for five minutes.
After being boiled the surface turn to orange and eggs to gray(click!).

I had one by the hostess's advice, and well... it tasted creamy like a sea urchin with a little bitterness. Yeah, it's good with beer!

Although my friend wondered if it is edible and hesitated to eat it at first, but he found it so good and went out to catch it by himself.

Indeed, it is sure we can't stop it!

Let's go to the beach for starfishing with your faminy this weekend, not clamming!

And it goes with beer. I'm sold!

Starfish? Anyone?

I'm sure we'll find some soon.

I just had to comment on the fact that the Euro was $1.27 today. I am itching to buy a ticket overseas.



...Edible starfish. Did you know starfish and salamanders have incredible powers of regeneration? I think I knew it about salamanders, but didn't know about starfish. But during a conversation with Matt today, the topic of starfish regeneration came up. (We have such intellectual conversations, Matt and I. I can hardly keep up, but he talks with me anyway!)

I started to wonder if there might be any research being done along starfish lines and found this:

Scientists Search Starfish For Key to Human Regeneration

By Brandon Keim EmailApril 06, 2007 | 4:09:14 PMCategories: Biology, Stem Cell Research

Starfish Hoping to discover whether the limb-regrowing powers of creatures like starfish and salamanders hold the secret to human renewal, University of Florida researchers are set to embark on a $6 million Regeneration Project.

Yesterday I talked with Dennis Steindler, project leader and head of the U of F's McKnight Brain Institute, about research developments that have laid a foundation for the latest wave of regeneration research. Said Dennis:

The big question everybody thought about in what used to be called developmental biology, is now called regenerative medicine, is this: why do some organisms readily repair themselves, and others don’t? And even in a single large organism, why do some tissues reapir themselves and regenerate, and others don’t? We needed to get to a level, thanks to the revolution in molecular genetics and now the revolution in stem cell biology, where we could really tackle those questions.

Now we have the human genome mapped, and genomes are being mapped from almost every organism you can think of. We needed to know that there are so-called adult stem cells, or tissue-specific stem cells, in all organisms. These are there not by coincidence but to attempt and often succeed at repairing injury. Even the adult human brain has a persistent stem cell population that lives in an area we used to anecdotally refer to as brain marrow, which looks like bone marrow, which makes blood and other cells.

We needed to know that these cells exist, and where they do, and that if there are not stem cells in all tissues and organisms, there are certainly progenitor cells that persist all through life that have certain stem cell-like qualities and often attempt repair all by themselves -- but, depending on injury or disease, they get overwhelmed and fail at regeneration.

All this is coming together now -- not just relating to human regeneration, but to other organisms. And we’ve got the material I think we need now to start to comparing them.

Check out the article here. And check out the University site here.

Pretty cool. I wrote to the University to see what the latest and greatest was and they WROTE BACK and said they'd try to get something to me in the next several days. We shall see what comes of this.


I paid $2.60 for gas tonight. Heard on the news coming home that the market tanked--again--and the cost of a barrel of oil went below $68 or $60 or something. And we lost 750,000 jobs. 750,000!!! AND the British pound, at $1.64, is less than what the Euro was back in April. What a world we live in today. Scares the shit out of me. I hope those crazy mavericky people get sent home on November 4.

But I digress. While at the gas station I had a hard time with the pump. It was so hard to squeeze I asked a nice man in the truck behind me if he could pump my gas for me. He very kindly did, and secured the cap for me when finished. Here's to you, kind truck driving Coast Guard man.


Now. Back to my search for edible starfish.



What a great morning for running: cold enough for a long sleeve technical but not so cold I had to resort to long pants. This is what I've been waiting for.

Kendall and I started on the Custis Trail side, as usual. This side is chock full of hills which I used to charge but which I now baby step. I was baby stepping, Kendall was ahead of me, and then I decided to walk for a moment. Kendall, graceful, strong, lithe and lovely Kendall, continued up the hill and turned up another, and all the while she made it look effortless. Her running has changed so much in the last 15 months. She didn't see the smile on my face as I watched her glide up those inclines.

Hills make you dig deep. They challenge you and try to mess with your head. It doesn't just take physical strength to make it up a hill, it takes determination and guts and courage. This is Kendall.


And again...

There is still a meltdown rumbling within my dear youngest child. I thought to myself this evening how it's been such a long week already, when I realized it's only Monday. I feel so frustrated.

Tonight's issue involves a yellow shirt, which she claimed last night she didn't need for School Colors day, but which tonight she insists she must have. Had to go to Target for some temporary blinds so I thought we'd look for a shirt, with the understanding that if there wasn't one, she still had Plan A (yellow and blue plaid blouse) to fall back on. The less able we were to find a yellow shirt, however, the less viable became Plan A. Screaming ensued, now quiet hangs over us, both of us unwilling (her) or afraid (me) to speak.

I have to laugh, though, about her suggestion that I buy a yellow towel and make it a shirt. Right.


So much to say, so little time...

It's been a hell of a weekend. Meltdowns, threats, support groups...I just want to crawl in between my sheets and sleep for a hundred years.

Okay, the meltdowns were hinted at yesterday. I'm usually the dumping point when she has them because she knows she can dump and I will still love her. She was in rare form yesterday, however, and I crumpled. She threw out things like "since the diagnosis what's the point in living" and "just kill me" and "I'm having suicidal thoughts" and "we have lots of knives." How am I supposed to stay calm and steady in the face of this? I know 99% of what's said is the Aspergers Monster and is totally meaningless, but it's been said and I have to respond. That said, Kate is getting a call tomorrow. It's been too long since our last visit and we need to get back on track.

Today's support group was really interesting. I almost didn't go because I was solo and because of the meltdowns, but I'm glad I went. The guest speaker gave a presentation on home modifications which I found encouraging. I'm confident I'll not need any modifications for a long time IF EVER but, if I do and the housing market still sucks, I think I can make some changes here that will be suitable.

I also met a nice couple I hadn't seen there before. I didn't catch his name, but her name was Agnes. They asked me if I'd tried acupuncture, I said no, because I wasn't convinced it would help. Mr. Agnes was arm onset and had his first symptoms 10--10--years ago. He wasn't able to raise his arm. He also couldn't speak. He can do both now and he believes much of this is attributable to his regular acupuncture. That's all I needed to hear, I got his therapist's card and am calling tomorrow. Why not? Right?

Let's see. What else. Oh, yes. This morning we ran and were met several times on the course by Pete Cihelka, the FLS photographer. The FLS reporter, Cathy Dyson, interviewed me Wednesday night and sent Pete out to get some photos during this morning's run. This is another piece of the marathon package, since I'm such an interesting human (haha!). It was a great day for running--40's and breezy--and I'm hoping he got some good shots. Lynne, Nell and Janice were with me, which made it better.

So, now it's Sunday night. C Claire is better, I'm better, and it's time to crawl between those sheets.

Good night, good night! as sweet repose and rest come to thy heart....

(I'm such a goof.)


Don't talk.

In the book The Exorcist, there is a passage where the old priest warns the young priest not to get drawn into a conversation with the demon because it will suck him in and no good will come of it.

This is how it is when an Aspergers child has a meltdown.

I'm beaten. I've cried and will cry more. It's the same every time.



Yep, here we go! Rather than list everyone by name, let me just use the one word that fits them all: friend. My friends. How lucky is a person who has such good people in their life?

I, completely ignorant of the plans, arrive...

I must've been saying WTF!!!

These aren't in order, but it doesn't matter. NOW for names:
Laura, Wendy (Chief Conspirator), Mike

Moi, Mike, Steve, Amy, Nancy

With Nancy

And Steve

And Jen

Sue and I sharing a pensive moment...

Kendall, Lynne, Wendy, Bob

Becky, Beth and Lisa

Jen and C Claire

With Allison and Isaac

Intense conversation between Kendall and Lynne, while Tina, Melanie, Lisa and Beth look on.

Laura (Super Chef) and Wendy

Assuming my new title...

With The Pouffe

Wendy looking askance at her drink while Lynne extols the virtues of bottled beverages.

With Harley

John, C Claire, Beth and Lisa

Jenny and Damon

John stretching his very long leg!

Jenny and Bob

My C Claire

Something funny happening here...wish I could remember what!

Lynne, Kendall and Keri

Cassie, Phil and Damon

John, C Claire and Becky

Stephanie and Mark

With Beth and Lisa



Congratulations on finishing the Stonewall Jackson 20 Miler on October 11, 2008. For your records, the weather that day was sunny, 50 degrees F, calm wind.

There were 9 finishers in the Female 40 to 49 age group and 118 finishers in the Open Division.

Your overall finish place was 118, your gender finish place was 41 and your age group finish place was 9. Your overall finish percentile was 100 while your age group percentile was 100. Your time of 4:01:46.10 gave you a 11:55 pace per mile.

Well. I came in last in every category. I somehow managed to do better than the required 12 minute per mile pace...just barely!

I'm sore and tired today, but I think less than I might have been due to the huge surprise birthday party I went to after! It seems there have been plotters in my midst for some time, from my sister to my daughters to my friends.

I thought I was going to some business function with Lynne; she asked me to go about a week ago and I said okay (even though I wondered why I was being asked and not her BFF Thull). The timing fit in with the race: we'd run, clean up at her house, then go. Attire was business casual, no problem there. Where was the event? She said it was at some yacht club in Northern Virginia--further probing revealed it was very near where my sister and brother-in-law dock their boat, so I had a general idea where we were going. On the way I asked if she'd brought directions, and thought it very uncharacteristic of her when she said no. Lynne is always uber-organized so this was odd. I still thought nothing of it and asked questions about who it was the event was honoring, yadda yadda, and said I was glad I'd brought some business cards, you never know, etc. etc.

After one wrong turn we got back on track and pulled down the drive to the yacht club. Saw a kid fall off his scooter, talked briefly about where to park, and then I noticed all these people out front. I said aloud I wondered what all those people were doing when I recognized Mike Sweet. Then Nancy, then others. It hit me like a two by four--I couldn't believe I'd been totally unaware of this plan that involved so many of my family and friends. It was great! John, the girls, my sister, her family, my cousin and her family, friends from all my little worlds--all were there. And none of them, not one, ever gave the least little hint.

It was a fabulous party, too. Plenty to eat (thank you Laura), plenty to drink, perfect venue, perfect weather. I'm told people started to arrive around 2 and we got there at 2:30. I don't remember what time we left, but people stayed a nice long time.

Post-party analysis resulted in this conclusion: Despite all my semi-joking comments about being royally feted on my 50th birthday, I had no real expectation that there would actually BE a party so I wasn't looking for any indications. I never EVER doubt anything Lynne tells me so I fully trusted this was a work event. I know Wendy and Mike are not the only people who dock their boat at this marina so I didn't question that someone else docked there, too.

Thank you, Wendy, Laura, Jenny, Becky, Lynne and everyone else who worked to put this together. I had a super fantastic time and I am grateful and I love you.


Start spreading the news...

My friend Tam "Birdie" Clark is a goofball. She is running the NYC marathon in November, along with me, Lynne, Adam, Jeff, and other friends. Consequently, she gets "flash" emails, as do all registered entrants.

She responded to the "Call for Stories" and shared mine. Ours. All of ours, since we are all in this together. And they called her! Apparently I am a human of some interest.

It seems I will go on a special bus (a shortbus??) from Manhattan to the race start at Staten Island, will be able to wait in the VIP tent, will be escorted to my race corral (they said the front, but I'll insist on the back since it's my intention to walk the first mile) and they'll interview me along the way. Tam and Lynne get to ride the bus and wait in the tent with me. That Tam, she'll do anything to get a free bus ride.

I won't deny I'm excited about this. I just hope I'm not too boring.


In memoriam

It's been twelve years since Bill Harris died. I had the great good fortune to work with him for almost twelve years. I learned much from him about conduct, professionalism, and character. He was and still is the standard by which I measure people.

Here's to you, Bill.


Another one of those little things

I just paid $3.15 for gas. I passed up $3.33 and $3.21 and made the right call--there it was in all its $3.15 glory at Sheetz. And I was on pretty much dead empty. Life does have its moments...

Ha! Crowing about "cheap" gas at these prices! Like I said before, I'll take what I can get these days!

Claw report

I love today. I ran well (using the new definition of "well"), I'm wearing another new pair of zipperless buttonless hookless pants, and best of all, my right hand feels really strong and un-ALS-y.

I saw my physical therapist this morning. He always works my poor, stressed neck and my arms and hands. Maybe he touched something that responded well? Don't get me wrong, I'm still twitching like I always do, I am still stiff and have limited function. But I'm typing well and my range of motion is good and I feel fucking FABULOUS!

These days I'll take what I can get, you know? Considering the state of my retirement account, I'm glad of some good feeling.


It's the little things...

I've gone to the ladies' room 477 times today because I DON'T HAVE ANY ZIPPERS! Love love LOVE the new pants, even if they accentuate the Thighs o' Thunder!

Clearly it doesn't take much to please me these days....


Retail Therapy

Today I went shopping. I had a single purpose: find pants without zippers, hooks or buttons that didn't look ghastly. I am very happy to report that I was successful and even found a couple of jackets to go with. One of the jackets is an oh-so-fabulous leopard print--imagine how over the top gleeful I was to find such a lovely article. The buttons are a little hard but are still manageable with my left hand. And it's a JACKET so I can ask for help from the general population should it become necessary.

But the real joy here is pants with no zippers. No hooks. No buttons. Another adaptation, yes, but so what. We are all constantly adapting, are we not?



Friday night, C Claire is at the rink, and I have been paying bills. I don't mind paying bills. What I do mind is opening envelopes.

I can't believe how hard it is to open envelopes. Even using a letter opener doesn't help much. Either I have to hold the opener in my right hand, or I hold the envelope in my right. My dumb hand just does not cooperate and the opener drops or the envelope slips away. More and more I hold the envelope in my lap, using the heel of my hand to hold the envelope firmly in place while my left hand awkwardly rips open the seal. And God forbid the enclosures are too tightly wedged in--then I have to use my teeth. The whole process wears me out.

Any and all suggestions for a less awkward or fatiguing workaround are welcome.


It'll be fine, but...

I'm just a little tiny bit concerned. This morning when I took my meds, I became distracted while counting out the number of pills I had left before my next prescription arrives. I know I took the Rilutek but I was calling the pharmacy about the Lithium refill and honestly couldn't remember if I'd taken them or not. I don't THINK I took two doses of the Lithium, but I'm not sure. My stomach has been acting a little funky, but it's probably from yesterday's lunch.

My new plan is to put all the pills on the table or desk in front of me and then consume with my water.

INhale, EXhale

I just took a deep breath and remembered how wonderful it felt to breathe deeply. After I quit smoking I would take deep breaths all day, just because I could. I guess I should do it more now, while I still can.

I think that's funny.

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