THE ODDS (Debbie Does ALS)



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

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.



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.


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.



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


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.

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