THE ODDS (Debbie Does ALS)


Another picture

Look at my new little green man picture:

Do you see what's different? I guess this means I'm no longer a newbie. Just to clarify, the diagnosis came a year ago, but the first symptoms were October 2006 (or earlier).

Talked to a friend at work today about how I almost smoked a cigarette on Friday night. Lynne, Jenny J., Tam and I had gone to the Oktoberfest from hell and then out to dinner. When Jenny was dropping me at my car she was holding her cigarette out the window and I was SOOOOOO tempted! But I thought to myself how I was coming up on 8 years without and I couldn't bring myself to ruin my track record. My friend asked if I had ever considered Louise when making this decision and I said no--and that made me feel pretty good. I make a ton of decisions without thinking about my ALS. Isn't that cool? I'm thinking, yes, it is.


Picture time!

Even though I am a loser, my cousins are not. Here are a couple snaps they sent:

20 Curtis. As charming inside as it is outside, all due to the charm of the owners.

In the back of 20 Curtis is The Exchange, for the old Clinton Exchange. Within one will find books and other little items for exchange, or just to take!

Ross, Mary and moi at Red's Eats!

Ross and John.

Ross caught this crazy woman coming in from a wonderful cold run...

Since he and Mary had stocked the refrigerator with yummy Magic Hat #9, the crazy woman was compelled to be polite and partake...greedily, it appears.

Just chillin'. Gotta love times like these.


Windows will be in by or before Halloween, so says the window guy. Who sort of creeps me out, but he IS a salesman, after all. He also sort of pissed me off. We were supposed to have met last Wednesday night but he called and asked if I could reschedule since he'd had a thing happen and it resulted in him double booking, blah blah. I'm easy, said okay, we rescheduled for Saturday at 1PM.

Saturday at 12:30 I called, got his voice mail, and let him know my schedule was frighteningly tight so I wanted to make sure our appointment was efficient, short, cut and dried. At 12:55 he called and said he was still more than 30 minutes away. That wasn't going to work so he suggested tonight, Monday. I said fine, 6:30. It turned out we were both able to make it a bit earlier so he met me here just before 6. Papers signed, check written, and he says to make sure if I need to schedule anything else to be sure to do it through the main office because they normally do all the scheduling and that I WAS LUCKY HE'D BEEN ABLE TO SEE ME TONIGHT. Can you imagine how this comment was received by yours truly? The gall of this prick. I looked at him over the top of my glasses and told him in icy accents that if he'd caused me to reschedule a third time I wouldn't have been pleased. What a jerk.

Anyway, that'll be done soon and will be another box checked.

Now for the really fabulous news. I saw my gynecologist today to discuss options for a hysterectomy. I am sure I stressed before how that is one indignity I refuse to endure when I am unable to care for myself. My doctor was sympathetic and told me the solution was simple, would involve no surgery, no hormones, nothing traumatic. The procedure is called endometrial ablation and can be done in his office during my next well-woman visit!! I am over the top happy about this. And it is another box checked.

Does this relate to the run?

I had the craziest dream last night.

I was shopping, but all I remember about it was waiting in a long line at the cashier. When I finally got to the cashier, she needed my ID and my car key, which she disassembled! I questioned why she had to do that and she said they did it with everyone's keys. Next I was driving, going up a long (and seemingly endless) hill. I realized I had missed my turn so decided to turn around and found a good spot on the other side of the road to do so. I was in the process of turning my steering wheel to effect the u-turn when I realized my tires weren't moving, and I observed I couldn't see over the crest of the hill. I felt a detached sort of panic, and then the 18-wheeler came over the hill. I don't remember being hit, but I remember seeing the long lines of traffic caused by the accident.

Weird, huh?


The toughest ten...

I'm beat. Kept pushing today, pain and fatigue notwithstanding. I told the girls the reason I did is because I want them to say, at my memorial service, that "she didn't give up."

We ran 3+ hours today. Met at my house at 6, at my office by 7. At Bluemont Park by 7:20, where we discovered Lynne had brought two left shoes. So. She sent us on our way while she waited for Thull to bring her shoes from her house. Nice that he's such a good friend. So while she waited, Tam, Nell, Adam and I took off for the first buck 40. Ran to Shirlington and turned around, the way back being tougher than the way out as it is a slight upgrade. Reached Bluemont just before Thull arrived, right shoes in hand. Tam, Nell and I had only another hour and a half to run but Lynne decided to do her full 3:15. She had fresh legs, she was ready and she BLEW OUR DOORS OFF. It's not often Lynne will run and not check on me but today was one of those days. She had energy to burn. I directed them and then, just past the East Falls Church Metro, I turned back. At that point I'd run 2:35 and only had 40 minutes to go. I kept thinking "just quit, just quit" but for some odd reason I ran harder than I had all morning. Part of that was because the trail was mostly downhill and part of it was for the reason mentioned above. I really do want to set a good example. ANYWAY, I got back to the car and had 20 minutes--10 out and 10 back. I waffled and really considered just dying right there but somewhere inside me I found the fortitude. I dropped my stupid pack and headed back out in the direction of Lynne, Nell and Tam. Ten out. Probably the toughest ten minutes I've ever run. Ten back. Nope, not the toughest, but pretty close. The ladies caught up with me just before I got back to the car. I was so pleased I hadn't given up. It wasn't pretty, but it was a good run

Lynne continued for the rest of her run. I don't know where she gets it, but she is totally phenomenal. My hero.

Showered at the office, lunched at Rio Grande, rode home without incident.

Nell called just a few minutes ago. Told me she'd learned something from our run today. Said she'd learned determination. How cool is that.

Time for some foot therapy. I'm beat to a pulp.


Those pesky little green men

Remember this?

Yep. My avatar on PLM. I've been noticing an unhappy phenomenon.
Some of the PALS who were diagnosed about the same time I was are changing colors. To wit:

This is a small representation of my larger group. Each of these PALS have updated their outcomes within the last few weeks. I updated mine today. Still have yellow arms...which used to be green.

I guess I've changed colors, too.

Small arms ammunition points*

(*a fancy way to say bullet points. Credit: Greg)

It's almost 8 so I am scarfing down a tuna sandwich quick before the med deadline...or medline. Hahaha, I am so clever and I crack myself up! More on tuna later. I have some very important things to say.
  • Kendall, you make it very easy to accept help. Thank you. You've hooked me and helped me so much, I don't think twice about just walking over--I know you don't mind. But today's assistance was new and, in spite of my initial urging to get on your way, you stayed and you helped. For my darling readers who haven't yet been told, Kendall helped me put on tights. Yes, I know I said no more hose, but today's outfit NEEDED black tights and if I had to I was willing to crawl around on a floor in order to get them on. That was unnecessary because of Kendall's kindness. Kendall, ignoring me when I said "leave" just walked over, took the tights in hand, and helped.
  • Next. In response to yesterday's post, I got a couple of emails telling me exactly what I could do with myself if I chose to keep quiet about things I think about. I can't promise I'll always be forthcoming, but I very truly and gratefully appreciate your kind words and your support, my friends. (Gratefully appreciate? A bit redundant?)
  • Next. Wrote Lynne today about Sunday's long run and told her we had to discuss refill options. As she put it, it is a sign of the times that she defaulted to thinking about my med refills when, in fact, I was talking about a water vehicle for the run. Sometimes I forget that other people might actually think about Louise as much as I do.
  • Now for tuna. I love tuna. I was craving tuna. I decided that was all I wanted tonight so I pulled out my One Touch can opener (courtesy Mr D, of course) and opened two cans. You know what I forgot? That I had to squeeze the water out of the cans. Sigh. I did--to an extent--but my sandwich was pretty runny. Note to self: see if there is pre-squeezed tuna anywhere.
  • I hate twistie ties on bread. Didn't like them much before, totally hate them now.
  • 2424CX. You are an asshole. It's raining, it's heavy traffic, it's unsafe to drive so close to the car in front of you at a high rate of speed. There is an entire other lane you can move into to pass cars (yes, cars, not just me) if they are not moving fast enough for you. And, in the conditions I just mentioned, I think 75 is quite speedy enough, thank you YOU MOTHERFUCKER.
  • To all mothers pushing their delicate little babies in umbrella strollers in the Metro. DO NOT USE THE BABY IN THE STROLLER TO KEEP THE TRAIN DOOR FROM CLOSING SO YOU CAN GET ON THE TRAIN. I couldn't believe I saw this happen, but I did.
  • To provide a visual of a ceiling hoist, I did a Google search of images. Nothing very wonderful, but I did come across an image where a ceiling hoist was being used for a purpose not commonly thought of. Naturally I had to peek but, finding nothing that would appeal to the broader audience, I closed the window. It's funny what people will do with a ceiling hoist.
  • If you didn't see the Daily Show when Bill Clinton was the guest, I highly recommend it. I would vote for that man again. The mess this country is in makes me cringe, particularly when I look at my shrinking 401K which I will have to depend on much sooner than I'd hoped. I couldn't have gotten sick at a worse time.
  • And on THAT note. I say sick, I mean diagnosed. I can't put on tights but I can type an entry for this blahg. I can't squeeze water out of a tuna can but I can design key thingies. I can't hold my hairdryer but I can still make my hair look FABULOUS. And even though my 401K is shrinking, I am NOT. Still healthy, even if too plump for my liking.
Despite my whining and moaning, I do understand and appreciate the balance.


Not a happy morning.

Today I am mulling over in my mind the recent posts I've read concerning
  1. Bathroom remodel or a ceiling hoist?
  2. How to eat when you can no longer hold your utensils or lift your arms
Informative, full of good ideas from the PLMers. Things I don't need to think about yet, but things I think about anyway.

I was having breakfast this morning, a lovely IHop feast. Conversation with Kendall and Dan was fun and lighthearted, but in the back of my mind ran thoughts of "bathroom remodel or ceiling hoist?" and "how will I eat when I can no longer hold my utensils or lift my arms?"

I thought about mentioning it but didn't want to throw a stupid Louise blanket over the morning. I feel like I too often bring up Louise and it's got to get old old old, especially with my young young friends. It's got to get old with my less young friends, too.

I'm sorry, everyone, so sorry.

The word "hoist" unnerves me. Knowing that one day....oh my God. That one day such a thing will be necessary. It's not like the key thingie. That's fun, not too serious. But the rest of this isn't fun at all.

How did I get this stupid disease??????????????????


Who can title this entry?

Ross and Mary. Unbelievable kindness, generosity, sweetness. I felt totally at home and, as I told Mary, I felt like I'd known her before. Their home is charming and a blend of both of them but is really run by the two felines. (All feline owners are nodding their heads at that last comment.)

Camden is a beautiful place; the harbor is exactly what a harbor in a New England town is supposed to be. There is no such thing as a bad picture (although there is such a thing as NO pictures since I am an idiot and didn't bring a camera). For those of you over 40 and who will remember (I HOPE you remember), Camden is where Peyton Place was filmed. The arch, the McKenzie house, the Whitehall Inn--all right there. The arch says Camden, of course, not Peyton Place, but it's the same arch. And it is visible from my cousin Greg's front yard. Yep, another cousin, who I'd never met. He lives in the house he grew up in and around the corner from Ross, his father.

I ran and ate amazing Mary-prepared breakfasts, went to the Farmers' Market, Mt. Battie, Red's Eats (famous for its lobster rolls),

camp (oh, camp!), the Whitehall Inn, cousin John's home in Waterville and another in Belgrade. And more lobster. Who goes to Maine and doesn't eat lobster?

Camp. On Washington Pond, built by my Uncle Ross in 1948. I've been lucky now to have visited it twice but I won't deny I am envious of my cousins who spent summer after summer there. It's a special place. AND finally boasts a compost toilet!

I had a moment when Ross, Mary and I were at John and Barbara's. John and Ross are my mother's contemporaries. And each of them took care of her at different times: John, when it was time to leave California; Ross, when she was recovering from her liver transplant. Recalling this and being with them made me feel a little melancholy, and like I was representing her.

It was a fabulous visit and I hope I am able to go back. Soon.

When I returned to my office, one or two of the KIDS had put sticky notes all over my computer welcoming me back. I was touched.

While I was gone I didn't get on a computer at all. When I returned I jumped back into things, visited my regular sites, all back to normal. It was weird, though, going to PLM. I look at that site several times a day. It's helpful. But going back to it after a few days was weird because I had not forgotten about Louise, but I hadn't REMEMBERED about her much. If that makes sense.

I remembered her plenty today. Remember this? Well, it did not go so well today. I was in the restroom and had to GO, but I couldn't unzip the left side zipper. I would have been able to if I could have grabbed the fabric to make it taut, but that wasn't happening. Every time I tried my right had would spasm and cramp. Realizing I was going to have to ask for help, I carefully walked back to the office and found Melinda. Bless Melinda's heart, she was confronted with a blubbery old lady who had to pee but couldn't undo her stupid pants. I was embarrassed and frustrated and angry--and heartbroken. Here is something else I used to be able to do, but can't now. I got over it; jokes about elastic waists and other wardrobe modifications abounded. But still. It's something else.

I need a lobster roll.


The recap....

of the trip will come, but not tonight. But if I were to use one word to describe it, it would have to be....FABULOUS!


Le Clinique

Good clinic today. Good (great) FVC reading; fabulous visits with Ellen, OT, PT, Speech, Nutrition, Ellie (and her two students). Razzle dazzled each one with my McKey (credit: Lynne). More importantly, razzle dazzled them with my continued slow progression. Yeah, there is SOME progression--remember, slow doesn't mean NO--but when you think of where I could be....ugh, don't want to look there. I'm perfectly content here.

During dinner tonight, Miss C Claire was telling me that they have open book quizzes in her Honors English class but that she didn't need to use the book since she has a photographic memory. I'll give her that, she does have a gift. She said she was making the most of what she was. She's amazing. At 15, knowing to turn her AS into a positive rather than an excuse. I love that girl so much, my heart breaks.

Well. The cold rages on. I've decided to bag the run and get a solid night's sleep. I'll call the pulmonologist in the AM and see if she can call me in an Rx so my trip this weekend isn't totally ruined.

Sniff. Cough. Sniff. Goodnight.

Ninety-four Percent

No gloom.

But the cold is miserable. I guess one offsets the other.



Forced Vital Capacity. Lung strength. Was 103%, then 100%, currently 90% (second attempt, first time was 80%). Clinic tomorrow. Another reading. And I have a fucking cold.

I know the cold will affect the FVC. But I also know if the FVC is less than 90% no amount of rationalizing will make a difference. I will be gloomy. Even acknowledging this, I will be gloomy.

I must start now, start cheering myself up. Any and all cheeriness is welcome. Cheer away.

On the bright side (see, already starting), I can still drink water and puff out my cheeks and raise my eyebrows. And raise my hands over my head. And walk. And work. And run. And live.

Ah, perspective. A wonderful thing.

Disregard the gloom above. Until after I get the FVC reading.



Do not be afraid of this light. Yes, it is blindingly brilliant, but is only a glimmer compared to the brilliance (and modesty) that is MOI.

I mentioned yesterday I had crafted an adaptive device for my car key. Well, here, now, for all to see, is the object that is captivating millions, many of whom think it should be patented (clearly in a much less primitive form) so I can make billions:

(Nice manicure. I'm thinking of becoming a hand model for the withered claw set.)

(There are many captions that would work here. Please use your imagination. My contribution is that my car key is telling Louise exactly what it thinks of her.)

Truly a work of art, yes? But of course!

All emoting aside, I cannot even describe my elation when I put the key into the ignition, pulled down on the long lever end, and my car started without any cramping, spasming, or pain. Or without having to reach under the steering wheel and use my left hand. It was equally effective when I turned the engine off. I love this contraption and I am very pleased I thought of it myself and "made it work." (Yes, I also love Tim Gunn!)

And on THAT topic--Tim Gunn, I mean--let me share another idea, one I am calling Project Project Runway.

I wrote the producer of Project Runway the following (excerpted):

My 15-year-old daughter and I are avid Project Runway fans. Watching this program together on Wednesday evenings is a special mother-daughter bonding time for us. Many times we have discussed how much fun it would be to attend Fashion Week, specifically that segment that shows the Project Runway designers.

Last October I was diagnosed with ALS, or Lou Gehrig’s Disease. Our interest in attending Fashion Week has become more time-sensitive and we would very much love to attend the 2009 show.

Taking it a step further, we concocted an idea for a Season Six challenge: create fashionable, feminine, yet functional clothing for women who are disabled. I am fortunate in that, at present, I am still able to walk but I am losing function in my right hand and arm. As I am right handed, this makes it very difficult even now to fasten my pants and skirts and I am no longer able to wear stockings.

Consequently, I now avoid pants and skirts with buttons, hooks and zippers, as well as complicated blouses and tops. Looking ahead, my caregivers will need to help me dress and the less complicated, the better. Being a vain creature, however, I still wish to look nice despite my disability! Sadly, much that is available when you remove the difficulties is frumpy and boring.

We even have a suggestion for a guest judge: Former guest judge Nancy O’Dell, whose mother had ALS.

Whether or not you think our challenge suggestion is viable, my daughter and I would still very much enjoy coming to New York for Fashion Week 2009. If you could kindly forward our request to the appropriate person, we would be sincerely grateful.

I finished it with the usual pleasantries and included links to this blog and the Walk to Defeat ALS sites. AND I copied Tim Gunn, Heidi Klum, Michael Kors, Nina Garcia and Nancy O'Dell.

It would be so cool if anything came of this!


Good Sunday

Today was support group day. A young woman attended whose brother was recently diagnosed. She arrived in tears and cried several times during the meeting, especially when a couple of the guys were sharing feeding tube stories. I confess to feeling a bit queasy myself, but I looked at her and was flooded with sympathy and empathy--I remembered my first meeting and how I felt when faced with a possible picture of my future. This young woman clearly cares so much for her brother--she's frustrated with her seeming inability to help him, angry with this turn of events in all their lives, but brave and wants to know all she can. Bless her heart. I told her to call me and to give my contact info to her brother. He's arm onset, too, and maybe talking to me can be of some help.

Ellen brought a bag of giveaways today! I got a fat-handled fork WHICH HAS A BENDABLE HEAD! (It turns out the spoon I got some time ago also has a bendable head.) I also picked up a hand strap that has a strip which will accommodate a spoon or fork, very convenient for outside home. All my new devices prompted me to think of a workaround for my car key--and you'll think I am just the most incredible genius when I tell you! I took two allen wrenches and put them in some of the foam tubing, then put them through the key and covered the end with another piece of tubing. It acts like a lever and allows for easy turning! I'll post a picture at some point so everyone can oooh and aaah at my brilliance!

These meetings are easier each time I go. Whether it's because I'm feeling more at home with the group, or I am more accepting of my situation, or because I get goodies (!), I don't know. But it is getting easier.

Off to bed. All my love...


No, I didn't disappear

A couple rays of sunshine to report: Honda is giving me a bit of a break on the $3000 battery, and I met with a decent, reasonable window man tonight. Finally.

So enough about stupid MONEY.

Haven't run much this week. My feet hurt so bad after the weekend, and I was really tired after Tuesday morning's run. I bagged my run THIS morning so I'm going to try to meet Kendall tomorrow, even though it's Friday. Hopefully the new inserts in my running shoes will make a difference.

I've been thinking some about work, about how long I will work, and how I will live with no income from a job. And what I will do with myself. All enough subject matter for several hundred discussions and not for this post. But a PLM thread put it in my mind.

The "new normal" hand and arm spasms have abated, at least for the time being. I know they'll be back, as I can sense pre-spasm readiness in the forearm, but it's been quiet the last couple of days. I'll take it.

Work is busy, home is busy, the Two Headed Ale I'm drinking is pleasant, and it's time for bed. I will update you on Project Project Runway in the next few days. Oooooh, it's such a grand scheme!!!

Sweet dreams.



Must be the most expensive items when building a home. Window guy #2 just left a bit ago. I knew it wouldn't be good when he arrived in a BMW. Even his bare-bones-this-is-as-low-as-I-can-go offer was light years more expensive than I can afford.


$$$$ $$$$ $$$$

I'm trying to get work done to the house. Trying to be as economical as possible. Had a guy come over last night to give me an estimate on windows. Almost $10,000 he said. I thanked him and sent him away. I've got another person coming out in about an hour. Hopefully he will be more economy-minded.

I had to take my car in for service today because the IMA and check engine lights came on yesterday on my way to work. I had the car serviced last weekend so I was pretty sure it was just another battery glitch.

It was a battery glitch. But not the little battery. The big fat oh-my-goodness so expensive this-is-what-makes-it-a-hybrid battery. Which is failing. And which will cost over $3,000. I cried on the way home.

I'll get through it, I'll adjust my flexpectations, but right now I feel like there is a big heavy load with my name on it.


Another new normal...

I was thinking this morning about people who have died. I've mentioned here Mr D, Kevin and Rusty, all who died within the last several months. Kevin and Rusty were PALS and died way too young.

I learned today another member of my support group--Tony--died this morning. Not unexpected. But sobering. It's one more reminder.

Makes me grateful for every day I'm given.

The New Normal

My forearm has been spasming so much lately that it's becoming the rule rather than the exception. When it happens I can see the tendon sort of jump out as my hand curls toward my elbow. If it wasn't an indication of deterioration , I'd think it was pretty cool.

Nancy Jane Holt

Happy Birthday, Mom. Thinking of you today.


Patience pays

Yesterday I had my blood drawn to check my lithium levels; recall I said I waited patiently as it took unusually long for the lab tech to see me. I think she was grateful for the friendly chatter during my test (remember, this was done to distract me from that which is stomach-turning) because she got my results over to GW with the speed of light. Yesterday's reading: .73. It's higher than I like so I'll adjust my diet again.

Thank you, kind Quest lab tech. You're a sweetie.



...Miss Lydia.

She is our house guest for the next several days and may take up permanent residence with us. I had forgotten what a little kitty was like...recall that Shadow was 18+ and quite slow! Lydia has no fear and knows no bounds.

But there is no denying she is truly beautiful. She'll be the first to tell you.

Speaking of beauty, look at what else I found on the camera:

She is a joy.

I had a blood test today since it's been about six weeks since my last which, if you remember, gave a reading of .63. Keep your fingers crossed.

This was me today:

Totally fabulous because I got a great night's sleep. Happy at work. Happy listening to MiPod as I walked to the lab. Patient as I waited an unusually long time at the lab. Happy when chatting up the tech, mostly to distract myself while she played vampire (that one's for you, Mom). Thoughtful as I walked back from the lab. Anxious when I let my thoughts wander too far. Sad. Disappointed when there was no tuna salad at C&B. Happy when I returned to the office. Sad when I felt the bandage. Sad, too, when my arm spasmed so much. Happy when I talked to a friend on my ride home.

I tell myself to stay happy. To look away from all that other stuff. It's hard work, but I'm trying.


Sixty Days

Two more months to NY. I ran 2:48 today. It was tough, but it's done and I'm still standing. My left foot feels pretty beat up and my left arm spasmed like a mad fool--totally out of the blue which surprises me--but it's all good. I just need to be able to hang in there for two more months.

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