THE ODDS (Debbie Does ALS)


Speaking of the musically-inclined coworker...


Isn't it lovely? The composer is Yann Tiersen, popularly known for his work on Amelie. The pianist is none other than Mike Sweet.



Thirty-two minutes

How long has it been since my last run, I wonder. I suppose I could go back and look but methinks it's been about six weeks, give or take. The walrus I've become would suggest longer. Regardless, it's been a longer time than ever I've missed since I started running on June 25, 2000.

I found a new road earlier this week, connecting the Target shopping center to the industrial park where Becky took gymnastics so many years ago. It's close to home, sort of flat and fairly quiet. The detritus I saw on the road this morning indicates there is a fair amount of after-hours activity, but at 6AM it's just me and the birds.

I started out walking but stepped it up to a "wog" at 6:22. Horrified at how difficult each step was but persisted until I got into a rhythm--the slight downhill was helpful. When I encountered an uphill, I walked, but got right back into step when the grade became more friendly. I kept this up for 32 whole minutes. It didn't feel great but it wasn't terrible either. At least it was something.


Paris (not Louise) on my mind

Here is a dream Hotel. So luxurious, so beautiful. A talented, musically-inclined coworker stayed here once, several years ago.

If I could, I would go to Paris for just one night, eat at my favorite restaurant
and stay here.

However, if I had the funds to afford such extravagance, I would act frugally. It's fun to dream, though, isn't it?
TodayIwassobusyIscarcelyhadtimetothink. It used to be I would not water my houseplants when I was busy, they would die and so cease to be a responsibility.

These days I don't listen to voicemails. If someone calls and leaves a message (on my mobile, not at work), I simply delete it, refusing to accept the burden of making a return call. People who know me well don't bother leaving messages. I will take this opportunity to apologize to anyone waiting for a return call but, since my readership is small and none of you would leave a voicemail, this is really only a gratuitous gesture designed to make me feel better. Haha, must be genetic (wink wink, bro)!

ANYWAY. I have been SOOOO busy I have often not had Louise at the forefront of my thoughts. My physical tasks have taken longer but I am quick to ask for help (much to the dismay of my officemates). I love being busy and necessary and active. I think my 5%ism is due in large part to my job.

As well, I think Mike-the-PT-Wonder (and the PT itself) is a huge contributor. He is supportive and encouraging, and he knows his stuff. I am ever grateful he didn't immediately dismiss me because of the ALS diagnosis.

Hmmm. Feeling pretty good, all things considered. The bar's been raised and I'm feeling up to it today. What's the saying....always reach beyond your grasp? Today I feel quite able and, even though there's a good possibility (translated likelihood) I won't make it all the way, at least I'm out there trying.

Love you all.


STILL in the 5%

I heard from a dear friend today; attached was the following. It always amazes me when I see--am reminded--how stupid Louise affects those around me. Thanks, MGD, for your friendship, support, and strength.

Screw You Louise!

Her body's a slave to a cruel mean bitch
an ugly disease, and an evil witch.

You're the ugly girl that crashed the party.
The cruel fighting words with no "I'm sorry"

You're the runners legs tripping over the hidden root
the garden of Eden spoiled by the forbidden fruit.

You're the hand that shakes
the pants that won't zip

You're the endless hill
and the slave's cruel whip.

But I've got a secret...

You're the key that won't turn
the car that won't start.

You're the prom date stranded
and the sad broken heart.

You're the back that won't wash
and the hair that won't dry

You're a sad sad movie
and a never-ending cry.

You can make her carry you through all these years
Try to darken her days and highlight her fears

There is no comfort in your presence
nor truth in the phrase "I feel fine"

But I've got a secret....

Your power has limits
You're destined to be left behind.

You can try to take her body,
but not her spirit
or her mind.

You can get her in the corner
but no white towel will be thrown

Cause the secret I've got...
is she's not fighting on her own.

We can pick the runner up
We can modify the key

I was the prom date once
and take a look at me!

C Clair's got her back
and the sunlight dries her hair.

And the friendships that she has
a constant breath of fresh air.

There is a simple truth that is easy to see
cause it is more than blood that defines a family

We won't tap out, give up, give in
cause it's our beautiful Debbie that you chose to live in.

You're not welcome here
but its a cross that we'll bear

You can give us your best shot
and we know you don't fight fair.

If it's a fight you want, it's a fight you'll get
cause we know our Debbie is in the five percent.

Another one

Fred. Also 55. Arm onset, first symptom June 07, dx October 07.

I will quit my bitching and be grateful again for my slowness. I just wish it hadn't taken two death notices to bring me around. I'm such a fool.

Just so it's noted: I slid right out of my bed today and banged the crap out of my head. No, not attributable to Louise, just slippery sheets.


Bobby B

After 16 years, many of them loudly advocating for PALS, he succumbed via respiratory failure. He was only 55.

It's see these people on PLM day after day and sometimes it's easy to forget WHY they're on PLM.

Until they die.


More or...

C Claire is my anchor.

She helps me in so many ways, too many to enumerate.

Recently she helped me with getting dressed. I said to her I didn't know what I'd do without her.

Her response was simple. "Less."

Don't you love it? I do. And I love her. So much.

Another one, just like all the rest

Jeez, what a whiny baby I was yesterday. I guess I'm a little better today, but it's early!

I was greeted this morning by my neighbor's cat, who was removing a dead mole from my backyard. One less mole is always a good thing.

I went to Mass. Sitting in the front row, in a handicapped section, was an old man with a cane. I was delighted to see that his cane was in fact a golf club! He was a very enthusiastic singer, and his voice carried all over the church -- to the point he actually distracted the Cantor. I was dismayed to catch sight of her looking at him and almost laughing during one of the songs. Fortunately she composed herself... I don't know if I could have been so disciplined!

The cantor's husband and son were sitting nearby. As a family, they almost look Stepfordian: she is thin, pretty, youthful looking; her husband is tall, fit, perfectly groomed; their son is also tall, neat as a pin, very nice-looking. And they clearly love each other; well, at least that's how it appears. During the sign of peace, the son walked over to his mother (who was standing at the podium) and they gave each other a very loving hug. He returned to his father and gave him a hug -- not the norm for a boy in his mid-to late teens. I found myself choking up at this sweet display.

It was hard to kneel today -- my knees get very sore, probably because I've gotten so fucking fat. As I was walking up for communion, I thought how lucky I was that I could still walk. Still -- I hate that word. It's crazy that I am grateful that I can do what I've always been able to do and what everyone else does...sigh, I guess we should all be grateful and never take anything for granted. But, still...

I feel sort of hollow inside today. Mass was not satisfactory. I just go through the motions, and wonder why I bother. I guess I keep hoping I'll find an answer.

I don't want to take anything for granted, I don't want to feel sad, I don't want to cry. So, once I hit "publish" I am going to show Louise to the door and not look at her ugly stupid person all day.


I, I, I

I have cried a lot today, with frustration and rage. Couldn't get off the lounger in the back yard, couldn't light a candle, and it took me 45 minutes to get dressed. I hate being so inept incapable slow weak limited.

I don't understand why they can't find a solution, a cure, a definitive answer. I don't want to get worse, I swear I don't think I can handle it. I'm not strong enough.


My little blue friend

This is my newest favorite thing: my little exfoliating face pad. Isn't it adorable?

The reason I love this thing is because I can put my fingers inside and it creates the sensation of having all my fingers together;

as well, it gives me a small, very efficient tool to use when I wash my face. Washing my face, as I may have said before, has become unpleasant because my fingers are separated and the soap and water dribble through.

I'm going to buy another so I can be a two-fisted exfoliator.

My daily grooming has become a fairly unpleasant chore. Squeezing toothpaste, holding soap, washing my hair, and everything else -- it just takes so long and it's such an effort and I struggle so much. And yet, compared to where I might be, I'm still so functional. I can't imagine what it's going to be like later on. I don't want to think about it.

Whaa whaa whaa. What a bore I've become, my apologies. As I told Matt today (during our fabulous lunch!!) this is my attempt to chronicle all the little things I'm experiencing. Maybe there is another person out there who has been touched by stupid Louise and who is looking for this sort of record. I remember when I was newly diagnosed--I sought as much real-world, practical information as was to be found, and none of it was satisfactory. Maybe this will make a difference.


Beach Party!

Race for McGee 10 km

Pass it on......thanks!

From a friend of a friend

I got this today from a friend -- it's pretty interesting. Enjoy.


A big fat reason to smile

I see a jacket purchase in C Claire's future. I am very proud of my girl.


Joyeux Anniversaire Tardif

On March 31, the Eiffel Tower will celebrate its 120th birthday and a year-long project to apply a new coat of bronze paint will begin. The once-controversial structure now boasts seven million visitors a year and fans worldwide.
On Tuesday, March 31, Paris’s iconic Eiffel Tower will celebrate its 120th birthday and, as a present, will receive a brand-new coat of paint.

The job will take over a year and will involve the painstaking labour of 25 painters applying over sixty tonnes of paint at a cost of 170 million euros.

Picture showing the building of the Eiffel Tower in Paris in November 1888.

This won’t be the Iron Lady’s first makeover. Designed by Gustave Eiffel and built for the Paris Universal Exhibition of 1889 to commemorate the centenary of the French Revolution, the tower has had eighteen such cosmetic updates since its birth, changing colour several times, from red-brown to yellow-ochre, to chestnut brown and finally to the bronze of today.

Quoted in France’s daily Le Figaro, one of the painters chosen for the project spoke of his love for the job. “Once you’re up there, you forget the ground, your worries, the dangers, everything stays behind,” said Aderito Dos Santos Baptista.

There have never been any fatalities from the painting of the tower although there have been some injuries.

The first-floor restaurant, rebaptised ’58 Tour Eiffel’, will also be inaugurated after a complete renovation.

Gustave Eiffel, engineer and designer of the Eiffel Tower.

At 300 metres tall (324 metres with antennae) and weighing 7,000 tonnes, the Eiffel Tower was the world's tallest building until 1930. There are 1665 steps to the top. One of the most visited sites in the world, the tower can boast a new record with nearly seven million visitors in 2008.

If the Eiffel Tower was controversial at the time of its inception, it is now very much accepted and considered one of the symbols of Paris’s beauty.



So. Let me bring you up to date on what's been happening.

I got all caught up in planning another whirlwind trip with the kids; it sounded great on paper but the practical application won't work. My initial reaction to this disappointment wasn't a good one, and I'm still trying to work through it, but it will be fine. I go way overboard and sometimes my enthusiasm needs a reality check. But I am still disappointed. Hopefully the trip will still happen, I just don't know when.

Speaking of realities, here are some of the latest:
  • I cannot hold my arms up over my head long enough to wash my hair properly. Only in the last day have I learned this wonderful little trick -- I prop my elbow against the wall as I do when I am stretching; my forearm and hand are then at the proper level for some adequate head scrubbing. I can't manage it for long but that doesn't matter because my hair is short.
  • The steering wheel is becoming more difficult to turn. I'm going to have to figure out a work around here, because I have to be able to drive.
  • Legs: heavy. Walking is still okay (despite the noticeable change in gait), but I am aware of becoming a tad winded. I don't want to focus too much on this because I'm afraid I do, it'll make it worse. I need to be ambulatory. I still have too much I want to do.
  • Speaking is okay, but tonight as I write (translated: as I dictate) this my mouth feels heavy and some of the words feel thick. It's been a long day and I am tired, which probably is the cause. I had an e-mail from the man at the ALS Association who helps with voice banking. I was reading through some of the material -- including some of the suggested phrases to record -- and I suffered yet another reality check. "I need suction," "please wipe my mouth," and others along a similar vein made me look down that awful road. I stopped reading it, I will look at it later.
  • I discovered recently I cannot pull out the knob on the washing machine, and turning on the bedside lamp is on again/off again (hee hee, I am so funny). I'm going to start looking for touch lamps to remedy that issue. I have to figure something out for the washer.
All things considered, I'm still doing great. Isn't it funny--if I didn't have ALS, I would feel pretty awful about what is happening, about where I am. Since I do have ALS, where I am now is a whole lot better than where I could be. It's all about perspective.

I just hope things stay slow.

That's about it for now, folks. I didn't realize it was so late, and I haven't even taken my meds yet. Good night.


What I need to learn to do more often


When the twitching is as violent as it is today, I just want to scream.



  1. Got hit. I don't think I mentioned that I was hit by a car last week. I was driving home, going down Wilson Blvd. in the right lane. I stopped at a red light. There was a Black Crown Victoria in the left lane. The light turned green and Mr. Crown Victoria started creeping over into my lane -- it was surreal seeing him come closer and closer -- I hit my horn and my brakes and heard my driver's side mirror pop. Mr. Crown Victoria pulled over and I followed. I got out of the car yelling at him, asking him what the hell he thought he was doing; he said he was moving into his lane. I advised him he was wrong, that it was my lane because I was already there! I looked at the side of my car and put my mirror back into its proper position and was shocked to see there was absolutely no damage to my car. There was no damage to Mr. Crown Victoria either. I told several it was as though we were gladiators in Rome; we were side by side at the same speed, and only when we put on the brakes did the mirrors pop. I can't believe how lucky I was.
  2. Invisible at the Metro. Today I faced something else I cannot do. I had to take the Metro into Washington for Advocacy Day and, since I did not have a farecard, I had to buy one. I prefer to use my credit card because it's easier than using cash, and I generally don't carry much cash anyway. So. I'm at the machine and need to insert and withdraw the card quickly. Well, you guessed it -- I cannot insert and withdraw quickly. Each one of my attempts failed and negated the transaction. Fighting back the frustration I looked around to see if someone could help me. Passersby would not look at me. No one responded. I felt totally invisible, frustrated, angry, and a pity party was beginning to take shape. I spied a man in fatigues and, since it has been my experience to receive only respect and accommodation from servicemen, I honed in on him and asked if he would help me. True to his genre, he came to my aid. I don't know your name, but I am very grateful.
  3. ALS Advocacy Day. Today was a long day. I was up super early and out the door so I could work for a while before I went to the 7:30 AM breakfast in the city. The breakfast was nice (but a tad long) and I sat with some nice people from Pennsylvania. After breakfast, I caught the bus going up to the Hill as my first meeting was in the Longworth building. I met the other members of my group and off we went. We hit the offices of four Representatives -- including the one for my district -- and one Senator. We didn't meet with the actual Members, only their legislative assistants. I was disappointed by this and I couldn't help but think this same attitude is partly responsible for the inattention ALS research receives. Perhaps I'm wrong, but it's how I feel. The people in my group were great and I hope I'm able to connect with them again.
  4. High-intensity twitching. I don't know how long it's been going on, probably several weeks. The muscles in my arms and my left hand, both my legs, my back and shoulders, and my stomach have been twitching to the point I can see it from the corner of my eye when I'm talking to some one. It's disconcerting and it makes me wonder if a change is in the offing. Oh well, whether it is or not, I can't change it. I just wish the twitching wasn't so violent.
  5. New York City. Random shots.


Mother's Day 2009

Back from a fantabulous Mother's Day Weekend in my favorite East Coast city. Can you guess which one? If you know me well, you can...

My mic isn't hooked up just now or I would detail all our activities, so that will have to wait until later. By that time I might also have pictures, a feast for the eyes.

Long story short, it was a very memorable trip for all of us. I am a lucky woman to have such excellent daughters.



Long day's journey...

I am exhausted. Got to work at 630 this morning and left at 745 this evening and didn't get home until close to 9 after driving in hard rain. The project I was working on required nimbler fingers than I currently possess and my right hand and fingers are cramping and spasming in protest.

I'm so beat that I'm not as up to writing as I thought. I'll leave you with this: I'm glad I still function as well as I do, but the reminders that I don't function as well as I used to are numerous and too frequent.




So. Number three -- or was it?

Lynne and I were in Frederick today for the half marathon; she as the runner and I as the mascot. We were headed back to her car from the fairgrounds, walking along the sidewalk at a fairly brisk pace when my right foot caught a piece of uneven concrete and -- you guessed it -- down I went. I could hear people around me reacting to my fall, I remember realizing I was going down, but I don't remember impact.

Once I hit the ground I remember rolling onto my back. Lynne and another woman were hovering over me, not letting me get up. My first words to Lynne were "this was not an ALS fall." The other woman kept saying I hit my face, but I didn't feel anything (because I hadn't hit my face). Because we were at the race start there were medical people nearby and they came running. I felt totally ridiculous sprawled on the ground, being attended to like it was something serious. I did scrape my big toe (and ruined my pedicure) on the right foot, and I scraped my left knee. My arms, hands, face, butt all survived. My pride has taken a hit though.

So what do you think? Lynne is concerned, I am not so much. After I fell, I mean tripped, I managed to walk 2 miles (to the 6.5 mile point on the course) without mishap.

I blame the sidewalk and my big feet.

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