Almost forgot

Yesterday I posted that my darling daughter had been less than darling in her dealings with me. We steered clear of each other the remainder of the evening but, when I went to bed, she came in to see me. She pulled up my blanket and asked if I remembered how I used to tuck her in at night (how could I forget?) and proceeded to tuck me in. She gave me a kiss goodnight and left.

We had a conversation today about how to manage her frustration and anger in the face of helping me. She was remorseful, sweet, and receptive. She IS a darling and my heart breaks when I think of how she must feel about what is going on around her.

The promised snow, she has arrived

As I sit here in my serenity room, watching the snow fall on top of the snow from the weekend, three things come to mind. I will share (you knew I would, didn't you?):

1. On the Weather Channel there is a program called When Weather Changed History. Think about it -- does that even make sense? How can weather CHANGE history? Certainly weather can impact events, but it does not change history. Semantics, people.

2. With all of the lovely snow we have gotten, it was only a matter of time before the rude and arrogant made themselves known. Cars with snow caps abound on roads throughout our region, caring little for the consequences their lack of effort might bring. It amazes me that people can be so stupid -- I actually saw a car making its way up 95 toward Washington, completely covered except for one little space on the windshield. Unbelievable.

3. Advertising for the upcoming Susan G. Komen 3 Day Walk for the Cure is in full swing on both radio and TV. Please do not misunderstand me -- I applaud this effort and my heart goes out to anyone who has been touched in any way by breast cancer, but one of the "personal stories" used in this advertising makes absolutely no sense to me at all. I'm talking about the woman who says (I am paraphrasing as I am unable to find text or a soundbite) that she never got to have a say in whether or not she wanted to lose her mother, and now she feels as though she's had a chance to have her say. What does that even mean?

Does that sound too bitchy? I hope not. That's not my intent.

On a weather note, I just received an alert that the federal government is closed again tomorrow. My memory may be faulty, but I do not remember a time when the government was closed for three consecutive days because of weather. It's a very good decision because there are no doubt many rude and arrogant snow cappers being kept off the still sketchy roads leading into our nation's capital.

Okay. My soapbox is beginning to buckle under the weight of all my opinions. Methinks it is time for a nice, refreshing Corona Light.

Yet another forecast

Where I live:
Today: Snow, mainly after 2pm. High near 32. Light and variable wind. Chance of precipitation is 90%. Total daytime snow accumulation of 1 to 2 inches possible.

Tonight: Snow. Low around 27. North wind between 3 and 7 mph. Chance of precipitation is 100%. New snow accumulation of 3 to 7 inches possible.

Wednesday: Snow. The snow could be heavy at times. High near 32. Breezy, with a northwest wind between 11 and 21 mph. Chance of precipitation is 90%. New snow accumulation of 2 to 4 inches possible.

Wednesday Night: A chance of snow before 9pm. Mostly cloudy, with a low around 22. Blustery, with a northwest wind between 16 and 21 mph, with gusts as high as 32 mph. Chance of precipitation is 30%.

Where I work:
Today: Snow, mainly after 2pm. High near 32. East wind between 3 and 6 mph. Chance of precipitation is 80%. Total daytime snow accumulation of less than one inch possible.

Tonight: Snow. The snow could be heavy at times. Low around 26. East wind between 6 and 9 mph. Chance of precipitation is 100%. New snow accumulation of 5 to 9 inches possible.

Wednesday: Snow. The snow could be heavy at times. High near 31. Breezy, with a north wind 14 to 17 mph increasing to between 22 and 25 mph. Winds could gust as high as 36 mph. Chance of precipitation is 100%. New snow accumulation of 4 to 8 inches possible.

Wednesday Night: A chance of snow, mainly before 9pm. Cloudy, with a low around 21. Blustery, with a northwest wind between 20 and 24 mph, with gusts as high as 37 mph. Chance of precipitation is 40%.

Working from home on Wednesday; keeping my options open for Thursday.

This is getting very, very, VERY old.

Is it spring yet?

1. 3-6 inches has been upgraded to 10-20 inches. Those of us in the South will not see as much accumulation -- but what does that mean?

2. The heat has been restored and the house is warming up. Thank heaven. I was all set to go to the hotel up the street but encountered reluctance from the other residents of my abode. Cecilia, in true emo fashion, said she'd rather learn to torture herself and not spend all that money. This made me laugh because she's quite adept at spending my money.

3. Cecilia. I did not make it snow and I did not close the schools. I know you are unhappy and I know you consider me a safe harbor. But your behavior tonight -- your impatience and unkindness -- was hurtful and I did not deserve such treatment. I am writing this rather than attempt a conversation because it's better for us both.

I could use a vacation.

Still no heat

Courtesy PostSecret

News from the front

Winter storm update: despite what yesterday's post may have reported, this morning's news advises we can expect between three and six additional inches of snow from Tuesday night into Wednesday. This may push me completely over the edge.

Over the weekend I read e-mails from my friends bemoaning the power outages they were experiencing. I kept silent, not wanting to tempt fate (much like I don't discuss traffic on my way home for fear the traffic gods will take revenge). Late Sunday afternoon I had conversation with Lynne about this very subject, making sure to be respectful to the power gods. Clearly, the power gods had an evil sense of humor -- at 9:30 PM we discovered our propane tank was empty. The only air blowing through our registers was cold. With any luck we will have a delivery today if the truck can make it down the road, not our road (which is clear) but any other road it must travel en route to my house.

I don't mind a cold house, and I have always loved sleeping in the cold, but there's cold and then there's COLD. Yesterday was COLD. A second blanket was deemed necessary. While the blanket was delightfully warm, soft, and inviting, it was also heavy. It was not heavy to John or to Cecilia, but they have an abundance of functioning muscles. I was unable to pull the blankets up, requiring Cecilia's assistance. The weight of the blankets was too much for my feet -- in particular my toes -- so there was much shifting around under the covers.

Getting ready for work this morning was also a bit of a challenge because it was so cold and, as I have mentioned before, I don't do so well in cold anymore. It is as though all my muscles contract at once and I look something like the zombies from "Thriller" -- without the dance moves. There is also the yawning, another reaction to the cold. So imagine, if you will, a yawning, lurching zombie applying makeup with frozen claws. Judging from the screams of the passersby on my way to work, I'm guessing my description is fairly accurate.

So, my way to work... I had no difficulty getting out of my driveway or my street or my road, and Interstate 95 north was clear and wide open. Once I hit the HOV, however, it became Death Race 2000. There was one inconsistent lane -- often comprised of some of the shoulder -- most of the way but, occasionally, no lane was visible at all. Not being one to speed through sketchy conditions, I maintained a very moderate 40 mph (plus or minus, often minus). Several of my fellow commuters, being either more confident or more foolhardy, would zip past me on the snow-covered side of the highway. The exit ramp and Route 110 were in good shape, Route 50 wasn't bad, and Fairfax Drive was passable. Since the federal government is closed today there is very little traffic, but my commute was still more than an hour.

Cecilia will be out of school today and tomorrow. She had cabin fever to such a degree yesterday that she and her dad walked the mile to our local Target. The physical activity as well as the retail therapy (she bought some gel pens) did her a world of good.

You know what would do me good? The disappearance of all these tons of snow.

Don't exhale just yet...

NWS Zone Forecast
DCZ001-VAZ054-080915-
DISTRICT OF COLUMBIA-ARLINGTON/FALLS CHURCH/ALEXANDRIA-
INCLUDING THE CITIES OF...WASHINGTON...ALEXANDRIA...FALLS CHURCH
300 PM EST SUN FEB 7 2010

...WINTER STORM WATCH IN EFFECT FROM TUESDAY AFTERNOON THROUGH WEDNESDAY AFTERNOON...

.....TUESDAY

CLOUDY. SNOW LIKELY IN THE AFTERNOON. HIGHS IN THE MID 30S. NORTH WINDS AROUND 5 MPH...BECOMING SOUTHEAST IN THE AFTERNOON. CHANCE OF SNOW 70 PERCENT.

TUESDAY NIGHT
SNOW. LOWS IN THE UPPER 20S. CHANCE OF SNOW 90 PERCENT.

WEDNESDAY
SNOW. HIGHS IN THE LOWER 30S. CHANCE OF SNOW 80 PERCENT.

WEDNESDAY NIGHT
MOSTLY CLOUDY WITH A 30 PERCENT CHANCE OF SNOW. LOWS IN THE LOWER 20S....

From the NOAA website:

....Tuesday: A slight chance of snow before noon, then rain and snow likely. Cloudy, with a high near 35. Calm wind becoming east around 5 mph. Chance of precipitation is 70%. New precipitation amounts between a tenth and quarter of an inch possible.

Tuesday Night: Rain, snow, and sleet, becoming all snow after midnight. Low around 28. East wind around 6 mph becoming north. Chance of precipitation is 80%. New precipitation amounts between a quarter and half of an inch possible.

Wednesday: Snow likely, mainly before noon. Mostly cloudy, with a high near 35. Chance of precipitation is 60%.

Wednesday Night: Mostly cloudy, with a low around 21....

Really. I'm quite over it, really I am. Even though it sounds like the accumulation won't be significant, any is too much.

The White Doom

A dear friend of mine, as witty as he is wonderful, kept a diary during what was being called "snowpocalypse." I present this for your viewing pleasure.

Horrible stuff.

Enough

Just for the record, I am sick of the snow.

News of the day

Yesterday there was a post on PLM advising of yet another death. These days I am a "lurker" but, when I actively posted on the forum, I had some interaction with this patient, a mid-40s woman who had arm onset. In recent months her FRS and FVC had dropped and she had not posted in a while. Consequently, I was saddened to learn of her death but not surprised. It's one of the characteristics of this support website that the names and faces go through cycles. I have only been a member since December 2007, but that is long enough to have observed this phenomenon. What amazes me is the number of people who are still going strong -- living with ALS for 10, 15, even 25 years.

Tomorrow I head to Richmond with my chapter of the ALS Association to meet with state legislators. This is not a visit to plea for money, rather it is to tout the good work of the ALS Association and to ask that the state partner with that chapter to continue providing support for ALS patients in Virginia. It should be an interesting morning.

This morning, as I was attempting to back into the handicapped spot in the garage, my gearshift refused to cooperate. This is not unusual -- it occasionally takes a couple tries before it's firmly in reverse. Anyway, as I was trying to get the car securely in gear I heard a horn honk at me which served to make me equal parts embarrassed, frustrated, and irritated. Finally successful, I backed into the space, stopping midway to mouth my apologies to the horn honker. Just as with the arm waver from last week, I was prepared to deliver a rant should I happen to meet the driver in the elevator. Imagine my surprise when I received an e-mail from the catering manager at the hotel next door to the office apologizing for her seemingly aggressive honk which was intended (she said) to alert me that I had plenty of room to back up. She said she was embarrassed when I stopped the car to apologize and she realized it was me. I thought it was very nice of her to write, and I responded in kind. No harm, no foul.

Now for some levity. I present to you a series of e-mails from this morning:

I wrote: Our brand-new doorstop, purchased only yesterday, has gone missing after only one day of duty. When last seen it was holding open the door that leads into the GFC. It is to be hoped that, since the doorstop does not have feet, it has not traveled too far. If you have seen the missing doorstop or have any intel as to its whereabouts, please call the doorstop hotline on extension 4478. For your protection, all calls will remain anonymous.

Thank you for your assistance in facilitating the safe return of the newest member of our supply room inventory.

One response I received was: Doorstops, you just can't trust them these days. They do what they want, when they want. I bet $10.00 it's hanging out at the local hardware store with all its other doorstop thug friends discussing what door they're going to "hold-up" next.

Followed by: I can't say for certain but I think I saw that very same doorstop stopping on N Glebe Rd. holding a sign that said will stop door for food............ It was low to the ground which made it difficult to see so I can't say for certain.......

I did receive an anonymous tip which prompted me to make a phone call, which resulted in the safe return of our missing doorstop, to wit:

All,

I am pleased to report that the doorstop has been returned. Recognizing that we are a force to be reckoned with, the kidnappers came forward quickly. Thanks to all who provided tips; your commitment to Truth, Justice, and the American Way is noted.

Anyone wishing to welcome the doorstop may stop by my desk at any time.

Very silly. I hope others were as amused as I was.

Time to grab some beauty sleep. Big day tomorrow.

Incr-edible

Not such a great day today. Despite the lack of any physical evidence, I suspect my hormones are still pumping at full cycle. Regardless, I can't seem to shake a sadness about the things I have lost and am losing.

Tonight a group of women I have known for years and with whom I used to run came to my house for a mini buffet in honor of another friend who was visiting from out of town. In addition to providing food for the buffet, these dear souls also prepared food for my freezer (hence incr-edible). Their kindness knows no bounds, their generosity is unparalleled, their friendship is genuine and much cherished.

It took about three seconds for me to create a spectacle by crying when the guest of honor said she missed running with the group. I feel like that, too. I excused myself and went upstairs, followed closely by my friends. I felt ridiculous, ashamed by my emotion. Not quickly enough, I recovered a bit of my dignity and went back to the group. From that point on all was well, but I did notice that conversation steered away from running. When it was reintroduced, it was often nostalgic and involved races I had run. In hindsight, I am more embarrassed about that because I do not want only to be happy when remembering things I used to do -- I want to be able to celebrate what my friends are doing now without being a stupid head crybaby idiot.

I wonder if I will ever get to a point where I don't ache for what might have been. This applies not just to running, but to so much else.

I am lucky to have such supportive and loving friends in all areas of my life. I need to be better at managing my feelings and my acceptance of the inevitable, at least for everyone else and maybe a little for myself.

But what I wouldn't give...

Maybe Lux would help the claws

(courtesy Michael)

This is not NASCAR

To the man in the red car behind me as I was coming in to the garage: I'm very sorry if my (lack of) speed in getting through the gate caused you a 3 second delay in getting to your parking spot, then to your office. On the plus side, however, had I not been so slow in getting out of your way you would not have enjoyed the arm waving exercise you performed, rendering you a more fit individual. I tried to wave back but, since the only arm I can raise with any authority is my left, you likely did not see it as it was too near the door.

You may also consider yourself lucky that it takes me so long to get out of my car because I was formulating a lovely, early Monday morning rant to which you would have been subjected. As my children (and scores of people in the service industry) can tell you, I am the queen of providing feedback -- both positive and negative.

Initially I was angry that you were impatient because I am slow. It occurs to me that I am at risk of being impatient because you are slow -- slow witted, that is. So I will take the higher road and forgive you for being a total idiot.

Mains et bras d'orange

This is what happens when you answer with total honesty.

Duh-scoveries

Yesterday I learned about two features my beloved Mac offers: sticky keys and text-to-speech.

The sticky keys feature is amazingly helpful. It is becoming increasingly difficult to hold down two keys at the same time and this tool makes performing this function a piece of cake. I was crowing about it to Cecilia, who looked at me like I had three heads and told me that this is not anything new, that sticky keys is pretty common across the board. Duh.

The text-to-speech feature is one I do not need at present, and may not need for a very long time. It's nice to know, however, that it is there and waiting should the need arise. I'm not crazy about the voices available, so this may be the time to pursue in earnest the "banking" of my voice.

One other feature that I am told is available on my Mac is word completion, sort of a predictive text application. According to everything I've read I should be able to start typing a word then hit the "escape" key for a menu of possible words. So far no luck. Does anyone out there have any suggestions?

(I just listened to this entire post using the text-to-speech feature in "Alex's" voice. Too fucking cool.)

Nice guys

John, the UPS deliveryman. And his sub, whose name I don't know. Tim, my favorite FedEx man, as well as the morning deliveryman (sadly, name also unknown). And the man from ADP who delivers the payroll who, incidentally, has a bad right arm and hand himself. These kind souls never make me sign for the deliveries they make.

Riding the rails

I was going through some old e-mails and found a draft I had saved that included a link to my interview during the New York City Marathon in 2008. I haven't looked at it for some time. The woman who was being interviewed had such a nice, easy, fluid stride. Her arms moved easily by her side. She seemed strong and I was envious -- no, that's not the right word. Melancholy is the right word. Perspective is an amazing thing; I did not feel strong during that marathon but I guess I was. I'm very glad I ran that race.

I won't bore you with a description of my ambulation or my less-than-straight arms; suffice it to say the muscles are not what they used to be. Remember: slow does not mean no, and the progression continues.

A second stair glide was offered to me by the ALS Association and I took it for the second set of stairs leading to the lower level of the house. So now my house boasts two -- yes, two -- stair glides. While I hate them for what they represent, I do appreciate them for the service they provide. I have begun using the stair glide more regularly, ever since I lost my balance on the stairs, plopped down on the land m-ass, and was unable to pull myself into a standing position. Better to be safe than sorry.

One problem: I always feel as though I look like Livia Soprano. Pooooor me...

A gift for Monday

Every morning on my ride into work, and every evening as I go home, I see it; near Seminary Road, the building that is under construction, every floor brightly lit with rows and rows of light. A friend of mine compared it to art and I have to agree. All those lights glowing in the early morning purple sky, in the early evening darkening sky, make me smile every time I see it.

As I was driving home tonight the sky was amazing. To the west there was a layer of fluffy, pillowy, pink and mauve, gorgeous clouds. To the east the sky was remarkably clear, and a dagger of this sky was cutting into the puffiness. Just below, on the horizon, was a small clump of purple and pink clouds, lit from behind by the setting sun and glowing, glowing, glowing. The entire panorama was breathtaking and, just when I thought it couldn't get better, the building appeared. It sits on the west side of the highway so was framed by the beautiful mauve (darkening to gray) puffy clouds. The cranes around the building were silhouetted against the clouds and stood at various angles, looking less like equipment and more like mechanical giants or dinosaurs. And the lights! They looked brighter than ever. It was so beautiful I almost cried.

I am not at all doing justice with my poorly worded description. And I know I must seem like a giant goofball to be so moved by something so silly. One thing I learned a long time ago is that there are gifts everywhere, we just need to be able to see them. Someone else might not feel so passionate about the image I just (inadequately) described, but when I saw this I knew I had been given a gift.

I immediately called my sister to share. What is very funny is that she had just seen a family of deer and was calling her husband to share with him -- she recognized the gift.

Did you receive a gift today?

How C Claire is impacted

Can you hear my heart breaking?

Another Saturday Night

When I came home Friday night and went into my bedroom, I was unable to turn on my lamp. I haven't been able to use my fingers for some time, the workaround here was grasping the switch between my knuckles. The last couple weeks, however, I had noticed it was becoming more difficult even to do that, and last night my knuckle grasping came to an end. So today it was off to Target for a new set of touch lamps. Happily, I found a nice pair with a clean, minimalist appearance which are already in place and are a delight to turn on and off. Problem solved.

Last night I had an interesting dream; the first in which I had ALS. I don't remember the whole thing but I do recall going into a circular closet that had many doors, each one was fitted with knobs I was unable to pull, I was looking for somewhere to hang up my clothes which included a skirt that had a torn hem. Putting the clothes on a hanger was impossible and my frustration was compounded when I was not able to find a rod low enough for my reach. Suzanne, the Accounting Manager from the office, found me wandering around in circles and helped me. We came upon a man in a suit who had just purchased a very unique cabinet; it was low to the ground and had a look in the style of Frank Lloyd Wright. The cabinet was a deep, rich lapis color, with fine, crimson striations on the surface. Interestingly, the cabinet exactly matched the man's suit. That's all I remember.

Today was family support group day. Everyone pitched in with food preparation and cleaning. Ellen arrived promptly at noon and down to the serenity room we went. I'm not going to go into any great detail but I do believe the open forum was beneficial and gave everyone an opportunity to share how they are feeling. Ellen made some very helpful suggestions, particularly the creation of a schedule to help define who is doing what, when, and where, to help evenly distribute the burden. Looking ahead, she offered some suggestions about my care that I will ponder. One option I will look into is creating a "share the care" team. This may be a very realistic solution when my needs become greater than they are today. I have incredibly good people in my life who have expressed their willingness to help -- this may be one way. It's a bitter pill for me and I hate, hate, hate that I will have to call upon anyone to help me in any way, but it is what it is. As I wrote to a dear friend only yesterday, "I know I should graciously accept -- and even seek -- the help my friends and family are so willing to give, but I will confess to a certain reluctance in this regard. The more I require assistance, the more I hate that assistance is required. A vicious circle."

Oh, my cherished independence, how I miss you.

If it is not raining tomorrow I am meeting my friend Cathy at the park for a walk. Please keep your fingers crossed for a dry morning!

I think that's enough for now. Sweet dreams.

Stem Cells Become Functioning Neurons in Mice

Finding moves research closer to helping people with spinal injuries, experts say

TUESDAY, Jan. 19 (HealthDay News) -- Transplanted neurons grown from embryonic stem cells were able to form proper brain connections in newborn mice, U.S. scientists report.

Researchers from Stanford Medical School say their study was the first to show that stem cells can be directed to become specific brain cells and to link correctly in the brain. The findings, they say, could help in efforts to develop new treatments for spinal cord injuries and nervous system diseases such as amyotrophic lateral sclerosis, or ALS, also called Lou Gehrig's disease.

The researchers focused on brain cells that transmit information from the brain's cortex. Some of the cortical neurons are responsible for muscle control and are the ones lost or damaged in people with spinal cord injuries and ALS.

"These stem cell-derived neurons can grow nerve fibers between the brain's cerebral cortex and the spinal cord, so this study confirms the use of stem cells for therapeutic goals," the research team's leader, James Weimann, said in a news release from the Society for Neuroscience.

In laboratory dishes, the researchers grew stem cells that were precursors to cortical neurons until the cells displayed many of the characteristics of mature neurons. The new neurons were then transplanted into the cortex of newborn mice, specifically into regions that control vision, touch and movement.

The transplanted neurons grew into the appropriate brain structures and avoided inappropriate areas, the researchers reported.

The study is in the Jan. 20 issue of the Journal of Neuroscience.

The scientists plan further research in adult animals and, eventually, humans.

More information

The ALS Association has more about ALS.

-- Robert Preidt

SOURCE: Society for Neuroscience, news release, Jan. 19, 2010

Copyright © 2010 ScoutNews, LLC. All rights reserved.

---

Thirty-eight

Honesty compelled me to update my FRS score on the PLM site. Call it optimism, call it denial, call it whatever you want, I refused to acknowledge that I was becoming winded when I walk. I can't ignore the truth, however, so I edited my assessment and was not surprised to see a 38 instead of 39.

Random shiz(z?)

Having reached 175,000 miles on my beloved 03 Civic Hybrid, I decided to stop at my friendly Honda service shop for some scheduled maintenance before going home. I asked John (who is home today for the MLK holiday) to bring me my laptop so I could spend my time productively (!) while I wait. However, I forgot to bring any glasses so the time has been spent alternately squinting and peering through partially closed lids, trying to make out the words on the screen.

One thing I can very easily make out is the exaggerated twitching in my forearms. They've lost quite a bit of muscle--particularly on the right--and yet they twitch as much as before. The biceps of both arms are ramping up in twitch activity, too. For that matter, it seems EVERYTHING is at high twitch. As I sit here, blurry visioned, typing with two fingers, I feel feet, calves, quads, hamstrings, walrass, back, stomach, man hands, arms, shoulders, chin and lips twitching as if I was hooked up to some sort of muscle stimulator. Oh, and my eyes also twitch like crazy, which I'm told is not Louise-related. At times I wonder about this.

Anyway.

Today brought an interesting incident. The door that separates my workspace from the rest of the office is heavy and shuts hard (note to self: have Gary the Engineer readjust, again). It's somewhat difficult to open--I need two hands to pull--and then requires that I use my left foot to hold the door in place so I can reposition myself to get through. Somehow I took a bad step today; the door pushed me and I toppled to my right, thankfully against a wall so I didn't fall on my land m-ass. I'll need to ask Gary if we can permanently "soften" the closing mechanism.

They are replacing two filters. Totally random rambles tonight, since I'll be here for a bit.

I did manage to get out Saturday morning, fully expecting to go four laps (4.4 miles). Halfway through lap one I felt it would be prudent to make a little stop and was heading toward the facility when Lynne ran up. She stayed with me for another lap and a half, at which point I was done. My legs were tired and I was winded from talking while walking. When I remember chatting with Lynne while running UPhill, it breaks my heart (for the millionth time) that those days are gone.

Full disclosure: I also became winded walking back from lunch last Friday, and again today. The new normal, I suppose. It sucks. Sucks the wind. Sucks the wind right out of me. I am a riot.

What else. Oh. I am having more trouble opening my meds. My right hand doesn't "palm" the lids so well anymore, and the left hand doesn't hold the bottles so well anymore. While I know this is to be expected, this (and everything else) is not what I expected.

Car is ready. I am poorer by $158, but it is money well spent.

Thus ends another installment of Debbie Does ALS.

Running on empty

This was a very motor intensive weekend. I used a full tank of gas -- well, almost -- both from a car and a body perspective.

Cecilia is doing a project for her media tech class; she has chosen ALS as her topic. In addition to yours truly, she wanted to interview a couple of other PALS as well as Ellen (the patient services coordinator for our local ALS Association chapter). Because these fine volunteers all live in Northern Virginia, a little bit of driving was necessary.

Saturday morning we were to be at Pat's house at noon, so we left at 11:15 AM. 45 miles and 45 minutes later we were at the door. The interview went well and Cecilia got some very good footage. The ride home was a little bit longer due to some traffic, but not terrible. One down, two to go.

I had been invited to a 40th birthday party Saturday night, one that I really wanted to attend. It did not matter to me one bit that I would have to drive 71 miles...each way. It was a long drive but uneventful and I was really glad I'd made the trip because the birthday girl was genuinely surprised and genuinely pleased to see so many friends. The ride home was likewise long but uneventful, but I was feeling my age by the time I got home -- I'm no 40-year-old youngster anymore!

Sunday we had an appointment with Ellen at 12 and an appointment with Michael at 2PM. Once again we were out the door at 11:15 AM and, with only a little navigational difficulty, were at Ellen's just past noon. Another good interview and we were out the door by 1:30 PM. Michael does not live far from Ellen but, since I have very little magnetite in my nose, I managed to be 30 minutes late. Making one small error cost me a great deal of time and a great deal of energy -- mentally and physically -- as I maneuvered back to where I needed to be. Apologizing for making Michael and Dan wait, we proceeded. This interview went as swimmingly as the others and I do believe Cecilia will have a good final product.

I was very tired by this time and the drive home seemed to take forever. The closer we got the sleepier I got, to the point where I could have fallen asleep at the wheel. Fortunately I did not and was relieved when I finally backed into the driveway. Cecilia had become a bit grumpy by this time and rushed into the house. I was so exhausted (and I did not want to have even the smallest confrontation with my child) that I thought I would just close my eyes for a minute before I went inside. One minute turned into 60 -- 60! -- and I woke up STILL IN MY SEAT BELT. I was cold and my legs were stiff, no surprise.

So, a lesson learned: I don't think I can drive those kinds of distances anymore, at least not in so short a period of time. I don't want any one commenting about my drive to and from work -- apples and oranges, my dears.

One other observation: I very rarely go anywhere solo anymore so when I do, I need to be prepared to ask others for assistance. Fortunately this was not a problem at the party, but I felt somewhat uncomfortable nonetheless. To thrust the role of caregiver onto unsuspecting friends is unpleasant. I know they don't mind, but I do.

So, time for bed. I am in the house, not in the car, and expect I will have a good night's sleep. I wish the same for you.

My Stooges: Crampy, Toe and Curly

My feet are stretched out in front of me and I'm watching my toes twitching back and forth like short, stubby cilia. My second and third toes are slightly curled, the result of a terrible bout of cramping in my foot. Actually, both feet suffered when I took off my slippers and climbed into bed; being taken from their warm, cozy environment and exposed to the relative cold brought on an awfully painful reaction. The cramping occurs in the arch, the outside of the foot, and the toes, and it is close to impossible to find relief unless I am standing and can press my toes to the floor. My left foot recovered first and looks fairly normal (despite being in need of a pedicure), but my right foot is still working through its "cramp curve" as evidenced by the curly toes. And the twitching.

I've heard other PALS talk about how difficult it is to find shoes that will accommodate their curled toes. I'm guessing my red, pointy toed, stiletto heeled boots are not going to be an option! Ha ha, they have not been an option for some time -- in fact, I sold them on eBay to a very nice man who appreciated that I was a "caring seller." Yes, a man. Keep in mind I wear a size 11 boot.

I will now segue from my man sized feet to my man hands. I present for your viewing pleasure the most recent installment of What The Fuck:

Man hand number one (the left). See how nicely the fingers curve. My thumb is fully extended which, as you can imagine, makes it difficult to hold a cup of coffee.

More of the same.

Man hand number two. The John Travolta pointing finger is holding its own, helped by the oddly shaped first knuckle.


Toes are quiet now. Time for bed.

Heard on the elevator

Thirtyish woman to 50-ish woman: so, are you excited to be leaving us?
50: no, not really, I will be taking care of my 92-year-old mother, who fell and broke her hip.
30: oh, I'm sorry to hear that.
50: yeah, it won't be any "fun in the sun" but it's what I have to do. It would be terrible if I was, say 25, and had to do this.

At this point I got off the elevator. I was thinking about my 16, 25, and 29 year old daughters. In light of what I have facing me, I have some things to think about.

Clinique

Well. Another clinic, another update.

The morning started with an unexpected mini snowstorm. We had a dusting in Fredericksburg overnight but, happily, the roads were untouched. As I was getting ready to leave this morning, however, it started snowing again, and hard! Lynne had quite a bit of difficulty making her way from her house but eventually got out to Route 1, which was unbelievably bad. Cars were on the side of the road and turned around, all because of this sudden storm. We estimated another 1-2 inches fell in the short time it snowed (almost an hour). We finally connected and off to clinic we went.

My FVC was 73. This is down from 80 six months ago, and 90 a year ago. Two years ago at my first visit I measured 104. The very briefest of mentions was made about feeding tubes (because of the breathing function required for a safe surgery). It is not time yet to think about this but mention was made nonetheless.

The declining number doesn't affect me the way it did before. Becoming anxious about it does not change it, so graceful acceptance is the better course. 73 is not a bad number -- it's not 104, but it's not too bad.

Somehow I have managed to lose 3 pounds. I have not made any conscious effort to diet; I pretty much eat what I want when I want and damn the consequences. Remember what Justin told me: fat is good for ALS. So I am a little surprised at the weight loss. One hypothesis is that things are becoming more difficult to do and, consequently, I am burning more calories. Another hypothesis is that I am consuming fewer Corona Light calories. It may be a combination of the two.

It was noted that my right foot has become weaker. Actually both my feet are weaker but the right foot is the most affected. Apparently my dorsiflexion is limited. One note on my chart said "early foot drop." In a preemptive measure, I have been given a prescription for an AFO (ankle foot orthotic) should it become necessary. Hopefully it will not become necessary for a long time.

Right-hand: even weaker. Left hand: weak but stronger than the right. Funny moment: when Ellie asked me to squeeze her hands, the left managed satisfactorily, the right did not even close around her fingers.

No frozen shoulder (thank you Mike).

I mentioned that my back gets tired more easily and more frequently. It was recommended that I consider cutting back my work hours. This will be tough because I love my job, I love the people, I love the energy. I will take baby steps here -- perhaps leaving earlier in the day one or two days a week.

Speech: fine. Swallowing: fine. Thank heaven.

Ellen and I had conversation about an in-home visit with the whole family. Cecilia's therapist had inquired whether or not there was any sort of support group for her to attend that would address the issue of my illness; there is not really anything appropriate for a 16-year-old. Having Ellen come to the house where Cecilia is with her family may be more productive.

A brand-new psychiatrist conducted the psych visit. This is the third psychiatrist I have seen in the three psychiatric visits to which I have consented. I am not convinced this is a productive use of anyone's time, but I submit to it nonetheless. Three sessions, three doctors, three different sets of notes, and neither the second nor the third doctor reference anything that has been discussed earlier. I understand they are there to provide support but I find it frustrating to repeat the same answers to the same questions. Maybe I'm just too picky.

Blood pressure: 144/85 the first time, 130/82 the second. It is never good at clinic and I have stopped even paying attention.

After clinic Lynne and I walked over to Bertucci's for pizza and beer with Adam and Justin. It was freezing cold and my poor muscles do not like the cold anymore! (Fortunately Adam had his car and drove us back to where we were parked.) In keeping with my philosophy to eat what I want, I ordered the chocolate mousse dessert after I had my ravioli. So there.

Jenny and Becky are coming over tomorrow for meal preparation. I intend to add some desserts, including brownies with chili powder. Yum.

Bite me

Yesterday I noticed a strange thing: Little tiny pockmarks on my key card which gets me into the office. It didn't take long for me to realize what had caused this -- my teeth.

When I get to work each day I arrange everything in my right arm/hand so that I can open the door with my left. I carry the key card in my left hand and, after swiping it in front of the card reader, hold it with my teeth while I open the door. Hence, the little marks.

I suspect this card will not be recycled after I leave.

My lovely little commute

Memorandum to: XNJ 1544

You are an idiot. HOV traffic merging into the main flow should not be regarded as a personal affront. When you leave a large enough space for a vehicle to move in, you should not try to close the gap after the vehicle has moved in. The driver in front of you should be able to see your headlights; if said driver cannot see said headlights there exists a risk of a rear end collision if said driver needs to apply the brakes. Said driver could not help but smile just a little when she saw that you had to apply your brakes -- hard -- to avoid hitting said driver. Another smile appeared when, after a violent passing maneuver positioned you two cars ahead and then those two cars moved to the right lane, said driver was right behind you. Where she stayed the entire drive home. With her headlights visible to you. Hmmm. That doesn't sound right, does it? I will let it stand.

*******************

Idiot drivers notwithstanding, things are fine at Chez Louise. Nothing of note has occurred; no noticeable deterioration, no new gimmicks, no great insights. So boring.

If you see XNJ 1544, give him a smile and wave. Maybe flash your headlights.

I crack myself up.

Happy New Year

2010.

I wonder what this year will bring. And what it will take away.

My next clinic visit is in a week. It'll be two years since my first visit and, for all intents and purposes, I'm doing rather well. I could make a list of the things I can no longer do, but that would not be cheery and optimistic, so I'll keep mum. Let me just say I miss those things, those things that, when taken individually, are small and probably insignificant but which, when looked at in the aggregate, are substantial. And there is more--or is it less?--to come.

The year will start off with a nice walk in the cold with good buddy Lynne who, in spite of the fact that I can't run, is still in this race with me. Friends like her don't come along very often and I am mindful of this most precious gift.

Good heavens, look at the time. One needs one's beauty sleep, so one must say goodnight.

It came, and it went...

I hope everyone had a very happy and wonderful Christmas! I did, and am sad to see the weekend coming to a close. I had all my daughters with me Christmas day and the day after, which was the finest gift of all.

Jenny and Becky had contrived to spend the day after cooking meals to store so that dinnertime is more easily managed when I return from work in the evening. We made a list of meals, fleshed out the ingredients we'd need and hit the grocery store. With the exception of three little items, we bought only what was on the list and headed home. The kitchen was a frenzy once we got started: John W volunteered to cut up the chicken and ham, Jenny and Becky worked together on meatballs, meatloaf, lasagna, and glop (most people will call this stroganoff), and packed and stored everything when it was finished. My freezer hasn't been this full since I went through an "easy do-ahead gourmet" phase a few years ago. Thank you, my darlings (you, too, John Wallace) for this kindness.

Today brought another treat: Harlem Globetrotters tickets in Richmond! Since my usual Basketball Buddy was reluctant to venture away from her beloved roller rink, I invited my 12-year old goddaughter who was happy (I think) to go. We had super seats--on the floor!--and were entertained from beginning to end. Theresa took lots of pictures, which I'll share when she does. It was a fun way to finish the weekend.

On the drive home, Theresa asked me if I would be her sponsor at her Confirmation next year. I am touched that she asked. Confirmation isn't until next November...I wonder where I'll be at that time.

Okay, the drivel stops here. Sweet repose and rest and all that jazz...

I am not curious. Yellow.

Klonopin. Instead of the amitryptline, Ellie prescribed Klonopin.

I'll keep it handy but seriously doubt I'll take it, for the same reasons I mentioned before: I take too many pills already and the side effects are crazy. No matter how I long for diarrhea and an even more impaired motor function, the possibility of seizures and personality changes (I wonder which of my personalities would change?) and a host of other things will keep this drug from passing my lips.

Showering at DX +26 months

Showering has become one of the hardest parts of the day.

Cecilia helps me get ready; she turns the shower head so it is on my favorite jet, she helps me take off my shirt, and she unhooks the bra. Then she disappears.

I can't help but catch a glimpse of myself in the mirror -- what has happened to me thus far is laid bare (ha ha, pun intended). I make a point of only looking at my eyes, sort of a survival trick. Peripheral vision being what it is I'm still able to see "the big picture." I look away.

I can still do for myself here in this little, private space. While seated, I soap up the altered face towel, the towel on my lap and the soap held carefully in my left hand. Washing is slow, deliberate, and frustrating. My arms just don't go where they need to go -- try imagining not being able to wash your shoulder or your neck without employing some convoluted maneuver. It is fatiguing.

I think I've mentioned before that I wash my hair by resting my elbows on my knees as I bend my head over. For the most part this is effective but I will confess that I spend a long time rinsing out the shampoo. I love the feeling of the water on my head; the shower jet I use provides more sensation than I get with my weak fingers. It is so relaxing I hate to stop.

Interestingly, while I am feeling so relaxed my mind begins to wander and I start with the "why me?" line of thinking. Pity party thoughts circle, sometimes landing, trying to sneak into my head. Most days I am able to shake them off and replace "why me?" with "why not me?" Most days.

Drying off is no walk in the park either. The towel is heavy and hard to hold. Not being able to wrap my hair, I once again bend my head over and press the towel to the top of my head. When I am finished, however, and lotion has been applied (another exercise in frustration) and the towel has been hung up (on the doorknob) and my nice fluffy slippers are on my feet, I'm just happy I was able to do it all by myself.

(NB: This entry began to take shape during my shower last night. It was much more comprehensive, introspective, cheesy. As it was put down on this virtual page I cut much of what I was going to say. You can thank me the next time you see me. Hugs and kisses to all.)

Pall Lane

The snowplow made it to my street about 3:15 this afternoon, the most welcome sight I'd seen all day. Its arrival meant escape, freedom...I'd been worried I wouldn't be able to get to work tomorrow.

My street has three houses on one side and two on the other. It's short. But treacherous, as the driver learned. As he finished his first pass and moved away from the other end of the street, he got stuck. Attempt after attempt to get unstuck just dug him deeper in. My neighbors collected their shovels and made their way to rescue the poor man, whose discomfiture was apparent from the lurching back and forth of his vehicle. Happily he was able to extricate himself from his predicament without any assistance, much to his (and our) relief.

He made better plowing decisions after that and left us to dig out our driveways. Again.

It's going to be one of those days

I dislike not having the ability to do normal things, like clean the snow off my car. I might be able to do the doors, hood and trunk, but not much else. That would be, of course, if I was able to get adequately dressed to go outside. I can't put on my boots or my coat without assistance, and everyone but me is a late sleeper.

I try hard not to become frustrated but it's a major effort. Anyone who knows me knows how I hate not being able to do what I want when I want. I guess that makes me rather a spoiled brat, doesn't it?

Spoiled or not, I wish I could clean off my car.

Let the games begin

If the snow was confined to the woods and the yards and other non-car places (I know I live in Fredericksburg but not all of us park our cars in the yard), it'd be fine. As it is, I'll be lucky to get out of here tomorrow.

Snow

Last night...


This morning, 9-ish. The disembodied bunny head is now covered.

Pseudophedrine musings

I've got a nasty headcold.

I was going to shop this weekend but now we are supposed to get snow. Lots of it.

I talked to Dr. Ellie yesterday about the stupidlaughingcryingshit and how I felt my speech was affected. She said my mouth was very likely fatigued from the exertion and my speech should improve (NB: it has). She's also prescribed amitriptyline which is supposed to be helpful on several levels. I'll keep it on hand but won't use it, at least not just yet. Why? Well, for one thing, I take too many idiot drugs now and am not keen on adding another to the cocktail. Second, take a look at the side effects. I'll pass.

C sees Jannan today. I'm crossing my fingers we have a pleasant night afterward.

You know, the snow may not be such a bad thing after all. I'm exhausted and am more than ready for the weekend.

Looking ahead

I'm pretty sure I suffered from very intense emotional lability last night. I've had a few hints over the past couple of months but nothing like this.

The worst thing -- apart from the crying and the laughing -- was my speech. It was as if my mouth and jaw had frozen, rendering me much less intelligible. This frightened me and made the crying and laughing even more violent.

In my (admittedly cursory) research following the event, I was unable to determine how speech is affected; however, since emotional lability seems to be bulbar-related, it stands to reason that speech is a part of it.

It's very likely hypervigilance and/or fatigue, but I felt "off" today. I was more aware of the movements of my mouth and the thickness of my tongue. Good God, I can't believe I actually dictated that sentence.

Methinks the best course of action here is to drink a lovely glass of Noche. Or two.

Pour votre plaisir

Not sure of the provenance, but I found this via a friend.

Stuff I do

I use a cosmetic sponge to apply my moisturizer.
I use my feet to apply lotion to my feet; a dollop on each instep is spread about using the heels, toes and arches.
I use the knobs of my dresser to adjust the back of my bra strap. I won't even try to describe the process.
I lie flat on my back with a rolled up towel along my spine to help keep my shoulders from curving forward.
I drink tonic water for the anti-cramping quinine.
I use face towels with slits cut in each corner (for easier hold-ability) when I shower.
I hold my car key fob in my mouth and lock the door by pressing with my lips.
I turn on my bedside lamp with the knuckles of the first two fingers of my left hand.
I weave a nail file through the first three fingers of one hand to file the nails of the other.
Similarly, I weave my fingers around the stem of a wine glass. For wine drinking purposes. Duh.

This list, as with everything else, is a work in progress.

Coffee

Well, nobody got up so I had to make the coffee. It's not that I can't, it's just such a slow and laborious effort. The coffee pot is heavy (heavier when water is added), the cupboards are hard to open (especially the one with the coffee filters), the coffee filters are hard to separate, the closurey things on the coffee package are hard to open. Even plugging in the idiot coffee maker is hard to do.

But. It's done. And I added a little special spice so it's uber-fabulous.

Bonne Dimanche

2006: Lynne was the director of the December half marathon so, naturally, I was enlisted to help (which I did happily and enthusiastically). We cleaned out the shed (much heavy lifting there), ran the course 8000 times (8001 times too many), woke up in the wee hours the morning of the race and, with the help of two able-bodied men, set the course up. During the race there was much driving from point to point, delivering water, putting out fires (no, not with the water), lifting, carrying, and on and on. When the race was over everything had to be picked up and returned to the shed. It was as physically taxing a day as I have ever spent and I was totally exhausted when I hit the sheets that night.

2007: having recovered from an abysmal Chicago, a successful Richmond, and a deep digging Philadelphia, I ran the half marathon instead of doing the behind-the-scenes work. It was not my best time -- 2:08 -- but it was certainly respectable. Louise waited for me at home while I enjoyed postrace refreshments at what we now refer to as "Pmokey Bonerz."

2008: I don't have any real recollection of what happened last year, but I know I did not run the race so I must've been a cheerleader. I can't believe I can't remember.

2009: it's 9:34 AM; the race started two hours ago. I'm in my kitchen, dictating this and waiting for someone to wake up so I can have some coffee. There was some conversation yesterday about my going to the race in my role of cheerleader but it all hinged on the weather, which threatened to be icy and rainy. I don't see any ice but it certainly is raining. I have become a fair weather cheerleader and am a disgrace to the regimen. (Okay, let me be totally honest. I'm glad I'm indoors.)

***************

Lynne told me yesterday she is going to run a 50K in Virginia Beach next week. The good friend part of me is very happy she is doing this because it is the logical next phase for her. The stupid part of me is sad I didn't know about the plans earlier. I hate I'm not any longer a part of things at that level.

***************

Last night I dreamt I was driving in New York City and had to go down a hill which was so steep it seemed it was almost a 55° angle (Is that right? No, not a right angle, I mean is 55° steep -- more steep than 45°? I never know.). It was impossible to see any other cars and I could only barely see the traffic light as I rode the brake going down the hill. The light turned red and I pushed harder on the brake and barely managed to stop. When the light turned green I pulled into a bus depot where they were taking applications for employment. I went into the building looking for some breakfast and was told my companion (companion? I wonder where he came from?) was upstairs. The only way to get upstairs was to climb various circular stairways and each time I would get to the next level I was told my companion had gone ahead. I could catch a glimpse of a dark pinstriped suit and knew instinctively that was who I was looking for, but I never did catch up. Crazy, crazy dream.

***************

My wild child has had a mostly successful weekend. There was a hint of a rumble Saturday afternoon when we ran into Target -- I will call it an "unexpected expectation" moment. We moved past it, however, I think because she had had an enjoyable afternoon at a friend's (!!!) and was anticipating going to the skating rink AT NIGHT. The lesson I have learned here is not to take her shopping. Ever again. I mean it. E-VER.

***************

Had enough? I hope you have a lovely Sunday.

Note to self

No matter how often it happens--and it happens too often--remember you love her and she loves you, no matter how awful are the things she says, which are said to provoke, which works, but you must not let it show because it only exacerbates the frustration, the frustration that came about when you tried to do something nice, tried to keep a promise, that turned out to be a big mistake because of COURSE it didn't work as planned ("fate, make me a punchline," right?) and the grunts turned into shrieks and threats then silence and avoidance and, oh GOD how you hate this and you don't want to hate her so you have to remind yourself that no matter how often it happens--and it happens too often--remember you love her...

A Wow Moment

(via Matt, who shares so many wonderful things)

At long last

My number is 80. I was fairly liberal with things I can still do, but I think it's a solid base.

Thanks to everyone for their contributions.

From PLM. I had to share.

The Top 10 Pick-Up Lines Heard in an ALS Single's Bar...

10. Your powerchair or mine?

9. Hey there Good-looking, what's your FVC?

8. My hospital bed has 26 different positions.

7. Wow! That vent tubing really accents your eyes.

6. I bet you look great in a pair of Depends.

5. I would really love to get under your bipap mask.

4. Ithinyerbodivvulenwanugomyu (speech device broke).

3. As you can see, I'm drooling over you.

2. Bartender, get the little lady another Ensure and I'll take another shot of Lactalose.

And, the number one pick-up line heard in (my imaginary) ALS single's bar is...

1. Is that your feeding tube or are you just happy to see me?

(credit: Tom)

Meet Wilbur

Please meet Wilbur Weston, a regular on the soap strip Mary Worth. Wilbur, for the most part, is unexceptional and has recently been introduced to Facebook which is why we see him seated before his computer. You may ask why I have posted Wilbur's picture here. Why, indeed? Look at Wilbur's hands! Except for the pudgy thumb muscle, these look like my hands! My fingernails are prettier, though.

So. My hands and I have had a pleasant evening. Upon arriving home I discovered D#3 intently doing homework. Not wanting to disturb her, I decided to try to prepare dinner. I'd purchased some gnocchi yesterday and thought that might answer. First, to open the plastic packaging. I used a steak knife and cut away around the perimeter of the package. I had to use my right forearm to hold the package in place as I use my left hand to cut, but it was a huge success. Next, I had to get the pot out of the cupboard. We keep our pots and pans in a lower cupboard; I bent over rather than knelt, rearranged some of the smaller pots and, with both hands/wrists, lifted the large pot to the counter. Another success -- I was almost giddy! I put the pot in the sink and turned on the tap and filled the pot about half way. This next step was more difficult: I had to lift the pot from the sink to the stove. My left hand grasped the handle on one side, my right wrist supported the weight of the other. I managed to get the pot on the correct burner and we were cooking! The water boiled and I dropped in the gnocchi, very pleased with myself. Another difficulty was encountered when I had to drain the pot but, with Cecilia's able assistance, that task was managed as well.

It wasn't much, but it's more than I've done in a very long time. I must admit it was a bit wearying, but well worth it. Miss C got her homework done with no interruption and ate a delicious meal prepared by Wilbur Weston.

Happy Harley-days

45 and counting...

Thank you. Keep them coming!

100 Things

I want to make a list like the one referenced in this earlier post. I've come up with about 25 or so but am encountering "list making block," so I'm coming to you, beloved readers, for your suggestions. I don't care how far-fetched or humdrum, I'm hoping to capitalize on your creativity and detachment from my Louise-focused gray matter.

You can submit via a comment (please advise if you do not want it published) or email me (address below the PLM badge).

I'm curious to see what you suggest, how much of it fits my former and present ability, and what my number is after all the additions and subtractions.

Thanks to everyone.

Consequences

After what happened yesterday, Jennifer has decided that The Pouffe will no longer ride in the front seat. The Stella-belt was unearthed and is being used. Let's see how Miss StellaBella feels about this:

She'll get used to it.

Which is which?

Sea anemone or tail-of-Pouffe?

Scenes from an accident

Today, while en route to get C Claire.

John's car is the white Honda. The black car was speeding, skidded out of control, and hit the front of John's car. A few scratches (face and hand) but he is otherwise unhurt, thank goodness.

I wonder what my number is

I copied this from another site: http://dftals.blogspot.com/2009/08/100-things-leading-to-single-choice.html

It has caused a lot of conversation on PLM. What do you think?

100 things, leading to a single choice

Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members. I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week. He agreed and I am thrilled to share his thoughtful essay.

By Dr. Martin Welsh July 26, 2009

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective. It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up. "That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end. I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech. But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.

Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.

I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things." Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child. Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course!

But suppose you get to where you've lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired. At some point, no matter who you are or how strong, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.

I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so. I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say "Enough."

I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.

Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.

I don't heart AS

I am so worn out with this child. I don't know if she'll ever read this but I will take the chance that, if she does, she'll understand that I love her in spite of the mean things, the scary things, the heartbreaking things she says and does. I wish I didn't have to depend on her for anything. I wish she didn't depend on me for so much--the emotional toll is enormous.

I hate coming home.

I am not a very good mother.

Lacking the big city.

Looking on the bright side blinds us to the reality. I heard this on NPR the other morning. The remainder of the report went unheard as I pondered this little nugget.

Looking on the bright side does help me manage Louise, but sometimes a bright light shines on reality and it's impossible to ignore. When this happens I have to rearrange my thinking, accept the new normal, and push on.

I'm pushing.