THE ODDS (Debbie Does ALS)


Beautiful girls

I'm such a lucky mother.

Random Info

Clearly I have one major thing on my mind. Been that way since October 26.

Expected Delay in Lithium Efficacy

In treatment of bipolar disorder lithium takes 5 days to create any improvement, and several weeks for maximum effect. For neurodegenerative disease it may take a month for an effect (Chuang and Manji, 2007). Thus it is expected that there will be a month of continued deterioration at the previous rate, followed by a reduced rate of decline.

Side effects experienced by PALS on lithium

As long as lithium levels are carefully monitored and adequate fluid and sodium intake is maintained, lithium should not cause serious problems for most PALS taking the dosage recommended for ALS, which is lower than the dosage used to treat bipolar disorder. Most side effects should also be transient (several days to weeks), experienced during the period of increasing lithium levels and the adjustment of your body to the lithium.

To date, the following are some of the side effects that have been reported by PALS participating in our lithium study. Many of the side effects have been transient, and many PALS have experienced no side effects.

  • Increased fasciculations. Please note that a severe increase in fasciculations may be a sign of lithium toxicity and should be checked by a doctor.
  • Dry mouth
  • Increased saliva
  • Skin irritation
  • Itchy or painful feet
  • Weight gain (oh, great, just what I wanted!!)
  • Increased fatigue
  • Minor headache
  • Loose bowel movements
  • Loss of appetite and diarrhea. PALS experiencing these problems had relief after discontinuing supplements and increasing fluid and sodium intake. Note that severe loss of appetite and diarrhea is a sign of lithium toxicity and warrants immediate medical attention!
  • A few PALS also reported an increase in breathing difficulties. This is not ordinarily a side effect of lithium.


Food that may decrease your lithium levels are those which make the urine more alkaline. Some of the foods in this category include citrus fruits and juices, watermelon, vegetable juice, mineral water, dandelion greens, papaya, mango, asparagus, onions, parsley, raw spinach, broccoli, and garlic. Note that the acidity of a food may not correlate with the resulting urine acidity. These foods may be eaten while taking lithium – just be aware that if you eat these foods often you may need to take a larger amount of lithium to achieve your desired lithium blood level.

Food that may increase your lithium levels by making your urine more acidic include cranberries, prunes, artificial sweeteners, beans, peanuts, walnuts, pasta, pastries, bread, beef, pork, shell fish, yogurt, cheese, buttermilk, sour cream, gravy, eggs, wine, beer, and soft drinks. If you consume large amounts of these foods you will want to make sure to start with a relatively low initial lithium dose and see if this is enough to achieve desired blood levels.

Looks like I'll be going on the air and water diet.

Here's the page all this info is from, for more comprehensive reading.

And, totally unrelated, I want to add a picture.

Pretty, isn't it? A happy place...


Checkin' in

Just a little note to advise I'm taking a little hiatus. Four days until the big L.


Monday late.

this post is being written using voice recognition software. Matt gave it to me to try at home and at the office. Seems to work pretty well.

Just for the record, the feet cramp more than they used to. Happened twice tonight during my run. Sigh.

Off to bed. Sweet dreams.


Really, this ISN'T a complaint...

...but it never stops. Ever. When we talk, when I read, when I drive, when I wake up, it's there. It's always fucking THERE. And I hate it and I hate this stupid disease.


About a mile away from the end of my run this morning, it started to rain. The raindrops were big and fat and I felt them as they fell on my head and into my hair. When I was finished and was driving home, my hair was dripping.

I love how my face feels when it has been rained on, then dries.

Thank you for the rain this morning and for letting me be part of it.



Okay, I'm not complaining. I'm just observing. I'm noticing INCESSANT TWITCHING and am trying very hard not to focus on the new area of twitch, in my glute and hamstring area. This could be terribly unpleasant because it is a quite LARGE area and, if it twitches as uncontrollably and as violently as my arms do, I may find myself being very embarrassed. It's a visual I can't even imagine.


Clinic Day

All in all, a great day at the clinic.

First met with Debbie the fill-in coordinator (Gwen was out). Not the most upbeat member of today's team; let us know she was burned out. Seemed impatient. I think she may need to look for some other place to coordinate because those of us attending this clinic don't need that kind of attitude. Lynne wrote me a note which she passed to me as if we were in 7th grade. It said "we don't like her, do we?" THAT made me laugh. NB: weight was unchanged (damn, still too fat) and my BP was not good. Normally I'm in the 110/72 range. Today it was 145-150/80-90. This seems to happen only at the clinic. When I go to the regular docs (gyn, gp), my BP is better. Think it's stress?

Then dear Ellen from the ALS Association. She did a check in with all of us. Her visit resulted in a "no needs" notation on my chart. We waited a bit and then headed down to the pulmonologist. I feel very inadequate with this doctor because I never breathe right the first time. Finally did it right and was told it was basically unchanged, but she'd noticed a bit of a wheeze. So now I am on something called Advair, which I'll take on a trial basis for a few weeks. I'm hoping it will make me breathe like an elite athlete and I can start tearing it up again. She also said there was no evidence of any weakness. Hooray!

So, back up to my "room" where I was next visited by the speech therapist and nutritionist. Made my faces and proved I could still drink water and was reminded to eat protein to feed my muscles. I think I can manage that.

The occupational therapist visited and showed me how to stretch my hand without putting too much stress on my joints (I was overdoing it). She gave me a spoon with a BIKE HANDLE sized handle to use. Oh my goodness, it's the weirdest thing. Also gave me a sheet showing different utensils I can order that will make eating easier. I will be like royalty of old, carrying my cutlery around with me from place to place. Instead of it being gold and sterling, however, mine will be some synthetic material with sideways heads. It all looks very Dali-esque. Was also given an rx for a resting hand splint to wear at night to prevent curling. Between the ugly curling claw and the equally ugly orthotic, my vanity is really taking a beating here.

Who was next? Oh, the shrink. Hadn't seen him before. He talked to all of us for a bit then made everyone leave while he talked to me. We discussed (CONTENT REMOVED), and then he left to meet with others. I wasn't crazy about this visit.

Dr Bayat was next. She gave me the grip test (24 right, 30 left), discussed twitching and how when the twitching STOPS it means the nerves are finally dead (so I will never again complain about the twitching). She did the standard strength test and observed more weakness in the right but still nothing in the legs or feet. The left arm and hand were unchanged. She gave me the rx for lithium which I will start taking the week after next. Then weekly check-ins with her for the first several weeks, as well as a series of lab work to be done a week after I begin.

Oh, and this one measurement she does with my hand, the Hoffman test??, had a different result from last time. Seems there was no response where before there was. Ha ha! I must be getting better. :)

Last but not least came the lab tech who took only one little tube of blood. Having been sent to the basement for gallons and gallons (or so it seemed) on my first visit, this was a treat. And speaking of treats, we had a bird's eye view of the popemobile as it headed up Pennsylvania Avenue toward the Papal residence!! Lynne was especially pleased with this, I think.

An interesting observation Dr B made in response to our inquiry: My left arm will likely experience progression similar to the right and, since that seems to be slow, it is to be hoped that the left will progress slowly as well. Anyway, it's still early days, but I am encouraged. As I've pointed out, it's been six months since my dx and I'm still functioning.

After all this, we ate, drove home, and I took a long nap. Got up and ran a great run with Lynne.

I'm so exhausted now, though, it's bedtime. Rilutek, Advair, and a bottle of water, then lights out.

Sweet dreams, dearest ones.


Still at work???

Yep. So much to do and since I'll be out tomorrow, here I am. Gotta make sure my "kids" are taken care of!

Tomorrow. Clinic. Where they measure my grip, my breathing, whether my toes turn up or down, if I can make a face, puff my cheeks, blow a kiss. All these little measurements that tell them how I am progressing. How much closer I am to, well, you know.

But it's six months since the dx. My hand is still working, if not as well. I not only can blow a kiss, I can scowl and smile and laugh and sneer and roll my eyes. Ha ha, my FACE, she is STRONG!

And tomorrow I will talk to Dr Bayat about The Lithium. Please everyone say a prayer or send a good wish that The Lithium will help. Will let me go to basketball games with C Claire and run and stay late at work and shop and travel and live and eat and live some more.

Time to go.


Cool weather

Yep, it is all weather related. This AM was cold, overcast, totally beautiful running weather. As bad as it was yesterday, it was fabulous today.

I love a good, cold run.

And I love my good, cold running, incredible friends.

Another gift.

C Claire and I went to the Wizards game last night. Haven't been to one since February and this was the last game for which we had tickets. Dinner at Bistro D'Oc was fabulous, as usual; C Claire had her escargots and I had Confit de Canard. MMMMMMMMM.

During the game I'd look over now and then at my sweet girl and see her doing her "shows" under her breath. She really wasn't much engaged in the game but was responsive whenever I'd talk to her about a play or someone in the crowd. By the end of the third quarter I decided I was tired (long day, tough run) and she really didn't care. As we walked back to the car I asked her why she'd come with me if she really didn't have much interest in the game.

She told me it was to spend time with me.

My heart was so happy. She's such a good, sweet, loving girl.


Doesn't pay to clean.

I was cleaning out a drawer earlier today and came across two things which made me cry: my mother's obituary and an article about my late boss.

My mom died shortly after her 60th birthday, Bill died just before his 59th. Both so young.

I must be in one of those moods. I can't stop tearing up.

Ugly 9

The heat and humidity were every bit as uncomfortable as I'd expected. Managed to get 9 miles in, but it wasn't pretty. Walked the last 3-4. Poor Lynne. Kept trying to make her go on without me but she insisted it was okay. During the post-run beer, however, we discussed the merits of a moped!

Supposed to be cooler tomorrow. Hope so. Runs like this are discouraging.


Friday Night

It's hot. I hope it rains tomorrow for my run. If it does I may manage to make it up Hospital Hill (unless I just collapse and stay at the hospital). I do not like running in the heat and humidity.

But I do like visitors in the office, particularly if those visitors happen to be Matt's wife and kids. They are such a lovely family, not surprising given who Matt is. Joy is a great mother and they have done so well with their children. Maddie is witty, intelligent, talented and beautiful. JJ is all boy in a walking "squish" body. They play so HAPPILY and I love hearing their squeals. Those of you who have kids or have been around little ones know that sound, when the absolute glee and total delight with their moment of fun can be heard in their voices and laughter. I love their energy and their purity and their sweetness.

Talk about a gift.

Time for bed. Sweet dreams and a good night's rest to you, my dears.

Breathing Water

Ugh and more ugh. Since I was a lazy butt and didn't run yesterday and since my IHop breakfast this morning was canceled, I decided to run before work today. The humidity is back. And the air feels thick and dense and wet.

Oh well. Only six months until October.

Some fun things to look at:

Jen and Miss Stella

Becky near the finish at the 10K

C Claire with our sweet Shadow

Happy weekend to all.


10:47 on Wednesday Night. I should be asleep.

I am treating myself to a beer right now.

C Claire and I met with Kate the Social Worker tonight. It was productive and I think will be a good resource for C Claire, and me. It's necessary at this point for me to compartmentalize a bit--still not a good idea to think too much about why we are there except to provide the outlet for her. I like Kate, and C Claire was chatty and friendly and brilliant. Listening to her with someone else's ears always takes me by surprise. I accept and am accustomed to her elevated use of language but in situations like these I am blown away. She doesn't "dumb down" like so many teenagers do. I love her so much and am so proud of her.

When we got home I made her dinner and also started a dish called biryani. One of the Ladies' Night ladies made it for a pot luck at the office and I was intrigued. Anyway, it is very involved and requires chopping and deboning. Both of these activities require dexterity--and I was clumsy and frustrated. I chopped a nail--thank goodness it wasn't a finger! And thank goodness, too, the nail didn't end up in the veggies! The energy expended, however, was enormous and my arms and hands are not only tired but they are twitching like crazy. Times like this are discouraging because I cannot imagine the twitching is anything but a sign of deterioration and I hate to think I've done anything to worsen the deterioration. My apologies for being redundant.

Deterioration, clumsiness and frustration aside, the biryani is cooking and smells fabulous!

So, it is late, after 10PM. Almost time for the Rilutek. One week until the clinic. And the lithium.

My niece has written and mentioned stem cells as something to look into. I am only superficially aware of what's being done with stem cells as it pertains to ALS but I will most certainly look into it and ask Dr Bayat on Wednesday.

In other news, I had a much needed and much enjoyed run this morning. While running, I was thinking about the faces around me at dinner last night. Have you ever been to a gallery that displays old portraits--portraits from the 16th, 17th and 18th centuries--and noticed the smoothness of the features? That's one of the things I saw last night. Each of these women, present in the 21st century, could have been a model for these portraits. I was conscious of a timelessness in their features. I must sound crazy, but I DO think about stuff like this.

The biryani is done. I hope it tastes okay--we'll find out tomorrow!

Off to bed. Sweet dreams, my dearest ones.


Ladies' Night

Tonight was Ladies' Night at the Ballston Melting Pot. Such a cool place with great fondue at each course: cheese, coq au vin, chocolate! I went with six coworkers, some of the nicest women I know.

We shared a bottle of wine--actually two, one white, one red--and easily agreed on the choices offered. As the fondue forks dipped (and dropped!) food, crossing the table to try each fondue pot, the mood was happy and everyone really seemed to be enjoying themselves. We talked, we laughed, we ate (too much) and had SUCH fun. I looked around at each of these women; looked at their eyes, their expressions, their smiles. Being part of this moment was so incredibly special to me. I try to be aware of the gifts I'm given--well, this was a gift of such magnitude I was filled with a joy I can't easily describe.

Things happen for a reason. And we are all where we are supposed to be when we are where we are. This time, this place, these people, mean so much to me. Maybe Louise is with me now so I can appreciate more the time that is now. I don't know. I'm not going to think too much about it. I'm just going to be glad of it.

Well and Happy

I have today received an email, sending more pictures and a message that hopes I am well and happy.

I am not well, but I'm trying to be happy.

What the fuck?



To my friend:

I am so full of conflicting emotions. What I am about to say sounds crazy, like I'm arguing both sides, but please bear with me.

I know people feel bad about Louise. I'm not crazy about it. And I know I have to be supportive of my family and friends and sensitive to your feelings about all this.

I don't ask that you be happy about this, but please do not burden me with your pity. I do quite enough of that for myself and it is wasted energy.

Tell me if you are sad and say the things that need to be said. Cry. I can handle it. I'll cry with you. We'll cry until we purge the pain then we'll laugh and go back to that acceptance place. It'll make us stronger knowing we have crossed that rough spot together.

But please don't look at me that "way." It breaks my heart.


The 10K, the Maasai, and The Fluff

I am eagerly awaiting the race photos from today's 10K in Richmond. Becky ran with me--her first 10K! She told me she was going to run back in November, after I delivered "the news." She trained and did really well; we ran negative splits, even while taking walk breaks!

First race since starting back on the Rilutek. Didn't have any breathing issues, yay!

On another running note, I heard the other day on the BBC about a group of Maasai warriors who are running the London Marathon to raise money for clean water for their village. Clean water--what a basic need that we take so much for granted. What a soft life we lead; we have so much we never even would notice is missing. I was humbled.


Update on The Fluff: she is stitchless and coneless. Only 39 more days and she'll be cageless. I miss the baby and can't wait to see her, especially if she's wearing her new little puff sleeved tee shirt. I know, I know, I dote on her. But she IS my grandogter, so I am entitled.



I try not to think about it, but I do anyway.

Why he chooses to be distant under these circumstances, I can only guess.

I shouldn't let it bother me, but it does.


I am BananaMan to Beck, the wickistick PF Chang's lunch buddy son of my dear friend, Allison. He and his brother and mother came to have lunch with me today. Allison and I have been friends for EONS it seems, hard to believe given her oh-so-young age. My kids used to think it was odd I had a friend who was so much younger than me. She and I ran my first marathon together. She's something special.

Her baby, sweet cuddly little Ben, is irresistible. Allison was holding him during a little fuss and he was so squishy and soft and adorable and I couldn't stand it--I had to hold him. I never even thought twice when she handed him to me. I managed okay, it's mostly the arm that does the work when I'm holding things, but after a few minutes I realized I was tired. My idiot stupid arm couldn't even hold a three-month old baby. It broke my heart.

On the bright side, I did get to hold the little squish, and I stole a hug from Beck. And I'll hold Ben in my lap the next time.



First, some good news. The social worker called and we have an appointment next Wednesday at 6. C Claire is agreeable. Yay!

Now the arrggh:

The social worker called just after I had gotten off the phone with The Crazy One. I haven't talked to The Crazy One in well over a year but they'd heard about the dx and "had to talk." Nothing is different with TCO. Doesn't hear what you say, talks over you. Makes insensitive generalizations (I am supposed to keep in mind there are others worse off than me. I know that. I don't give a rat's ass. Well, I do, but you know what I mean.) I'd forgotten how angry TCO could make me.

Fortunately the social worker's call helped distract me.

Fifteen minutes until rilutek #2. I promise I will not count every single pill. Talk about tedious!

OH! If you look at my comments (I only have three. Three? I think it's three) you'll see I was contacted by my niece. I was touched and pleased to hear from her. TM, I am sending you love all the way from Virginia.

Sweet dreams, all my loved ones.


And it begins again...

Have taken rilutek the first. Off to bed.

Random Updates

The Car

I don't need it YET, but it is increasingly difficult to turn the key in my little hybrid Civic,which is also a stick shift. I am on the lookout for a used, moderately mileaged Prius or automatic Civic hybrid. The Prius doesn't have a traditional key, and the automatic Civic can be fitted with a remote starter. I have to figure out the $$ because I sure don't need MORE debt, but this is going to become necessary so I may as well suck it up and just do it.


The House

Is going molasses slow. It seems as though the weekends are overful with commitments and there is SO much to be done it overwhelms me. I wish I could just sell it as is but the market is bad enough--I'd get almost nothing for it. It'll get done, slowly, but again there is the $$ issue. We have to do work little by little.


The Social Worker

Finally called me back but I couldn't take the call, thank goodness she left me a voice message. I've called HER back and will work quickly to arrange a meeting with her. I think C Claire will benefit and the social worker may be able to suggest some helpful strategies. C Claire is generally okay but, as I've said before, I know this weighs on her.


The Race

Have had nice messages from people who are interested in running or supporting the race. I've even heard from an incredibly dear friend who wants to sponsor! This emboldened me to reach out to my old law firm to see if they, too, would consider sponsoring. Hey, it never hurts to ask.


The Dream

I've just purchased a BlackBerry for someone else and am carrying it around in pink tissue in a white canvas bag. After a confusing moment (in the store? don't know) I realize I can't find the bag and am worried. I try to leave the store but, since I'm wearing clunky ROLLER BLADES, I can't make it down the rickety metal steps on to the bustling city street. My arms won't support me on the railings. There are lots of people there but no one helps. Next I am in an informal meeting room where I am supposed to meet with the people at a new job. The woman I'll be working for looks familiar and I realize it is the coordinator of my local ALSA chapter! She and another woman give me a company credit card and tell me they have to ask me the important question. I ask if they need to know if I understand how to budget or something along those lines but they say no, they need to know if I drink black coffee or lattes.

Too ridiculous, right? :)


Had enough? Yeah, me too. Time for some non-computer time.

Sweet dreams.

No April Fools, but so what!

I cannot stand the stupid, constant twitching! Arrgghh! There, got that out of the way. It is driving me CRAZY but saying it over and over and over again does become tedious, and one does not wish to be tedious.

I was sort of hoping I'd get a message today from someone saying "April Fools! You don't have ALS." Sigh. No luck.

Okay, sorry, sorry, enough of that. On to a much happier topic:

From Merriam-Webster online:
One entry found.

Main Entry:
su·per·flu·ous Listen to the pronunciation of superfluous
Middle English, from Latin superfluus, literally, running over, from superfluere to overflow, from super- + fluere to flow — more at fluid
15th century
1 a: exceeding what is sufficient or necessary : extra b: not needed : unnecessary
obsolete : marked by wastefulness : extravagant

I have finally found a job where I am not superfluous. Have I said before how much I love my job? Oh, right, don't want to be tedious...but I have to restate and restate again just how much I love my job. And the people at my wonderful job. I wish I could name each and every one of them but I won't, for a variety of reasons. But I know who they are and they know who they are and they know I love them!

My Lovely Morning

Because I didn't run Sunday or yesterday I decided I would do a nice short run this morning. But I overslept, Kendall wasn't there, and my enthusiasm and motivation were lacking.

Got to the locker room prepared just to walk the treadmill in the gym but, when I was tying my shoes, I double-knotted the laces. This I do only when I run. I took it as an omen.

It was not as cool as I like, but it was misty/rainy. I started slow and went out the Custis Trail. The lamps illuminated the newly-blossoming trees--such a beautiful and pleasing sight. I ran without stopping past the W&OD junction, up to the turn-around I usually take, back to the Bluemont and then on to the office. Somewhere along the way I wondered how I could ever have even considered for a moment not running, not doing this thing I love so much and which is such a part of me. It really is life-affirming for me.

I start taking the Rilutek again today, half dose. Preparing for lithium. My running may change, but I won't let it stop.

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