THE ODDS (Debbie Does ALS)


I want one.

Chocolate Egg Cream

The chocolate egg cream, invented in New York in the 1920s, is virtually unknown outside the Big Apple. Learn how to make this simple, unusual, and refreshing chocolate drink.


Just sayin'

 You know that feeling you get, out of nowhere, on the back of your neck or your shoulder, leg, foot, ear, or head? Sometimes barely a whisper of feeling but other times so intense it makes you flinch?

I refer to THE ITCH.

The itch that cannot be scratched because Louise is holding my hands and arms prisoner. It's enough to make me batshit crazy. Especially if nobody is immediately available to help OR if the person immediately available has an aversion to touching people, even her mother. (In her defense, she tries to help but, recognizing and respecting her reluctance, I refrain from requesting she provide relief.)

Eventually the itch goes away. But not before I remember those halcyon days when I was able  to raise and stretch my arms and hands and fingers, and just for a moment I think I must surely still be able to reach around to the back of my neck... until I try, and I cannot.

The next time you scratch an itch, relish it.



Un petit verre et une petite paille.  
I find coffee stirrer straws work best.  Cheers!

Following up

The highlights: I have not fallen, I have not aspirated, and I have not gotten an alert system.

The alert system requires a phone line and that we do not have, relying on our cell phones. Even if we did have a line,  the devices are not Louise-friendly. Consequently, I have engaged weekend babysitters. Now I will never be alone. Or at least not for very long.

In order to avoid that awful aspiration mess, I follow proper drinking-through-a-straw guidelines;  the chin is tucked before my lips even touch the straw. So far, so good -- there is no evidence of any spewage (always a good thing).

Recognizing that the culprit behind Wednesday's gymnastics was lack of balance,  a new walking protocol  is now in place and is strictly adhered to: no matter the distance, my attendant firmly grasps my wrists and we take baby steps to the destination (usually my favorite room, can you guess which one?), and contact is maintained until I am safely deposited.

Caregiver Lisa suggested I might want to think about making the move downstairs. She also  asked  about installing a ceiling track for a lift/sling. I don't like to think about these things just yet, but because I am a planner, I'm considering the following:

1. I will move downstairs at some point.
2. I will widen the bathroom door.
3. Rather than build out the bathroom, I'll purchase a portable roll-in shower.
4. Which will require a roll-in shower chair  (check with Ellen).
5. Rather than install a track, I will procure a Hoyer lift (again, check with Ellen).

If anyone out there has any suggestions, please feel free to comment. I think this is the most  practical and economical solution. Oh, I almost forgot, I may also be in the market for a hospital  bed. Keeping my head elevated and taking the pressure off my lower back are becoming problematic -- I can only put so many pillows behind my head, you know?

Have a lovely weekend. I'm waiting for my new babysitter to arrive...


Wednesday's Child*...

 ... found herself on the floor TWO TIMES yesterday. The first fall occurred en route to the bathroom (that damn bathroom) -- the right foot fell short of expectations and created rather a mess (no, not that kind of a mess, thank goodness!). Fortunately caregiver Janet, holding tight, minimized the impact and heroically hoisted WC onto the upholstered bench. After several minutes WC decided to return to her chair. Janet readied herself and lifted but  WC had other ideas and fell forward onto her knees. Poor Janet managed to keep WC's upper body upright and, through herculean effort, helped WC crawl to the chair where, in the manner of a devout penitent, she rested. Recognizing that WC was not in optimum lifting position, reinforcements were called. Andrew from across the street provided the extra muscle necessary to lift the dead weight from her kneeling position and help her into her trailer park chair.

 It was rather an ALS-y day.

*I was, in fact, born on a Wednesday.



Definitions of ASPIRATION

1.  audible breath that accompanies or comprises a speech sound
2.  a strong desire to achieve something high or great
3.  the taking of foreign matter into the lungs with the respiratory current

Definitions 1 and 2 do not apply to today's post, definition 3 is our focus.

Blah blah blah excess saliva, blah blah blah amitriptyline, blah blah blah dry mouth. I woke up at 4:45 AM because I heard John getting ready to go to bed.  My mouth was so dry I called (more like croaked) and asked if he would help me take a sip of the drink on the table next to me. The first swallow went down easily but the second did not; a pocket of air disturbed the flow and I coughed, then started to choke. I could feel the liquid as I inhaled it -- a stinging, burning sensation -- and I panicked as I struggled to breathe. I  sat forward, which helped, and soon I was taking sufficient breaths and the panic subsided.

The liquid eventually worked itself out and I was able to take a few nice, deep breaths and then went back to sleep. Everything is fine this morning but I am aware of the tiniest remnant of pain in my lung, reminiscent of when I had pleurisy in my late 20s.

Very scary, this aspiration shit. My new aspiration is to avoid it.


 (I can't help it. The word screams for a modified spelling and definition.

Definition of ASSPIRATION

1.  Enema

Forgive me.)

I do not like

What is happening to my feet and toes.

My left foot looks okay, except for the swelling. My toes look like Vienna sausages. The right foot is another story. Not only is it swollen, the three middle toes are starting to CURL UNDER, and they won't wiggle.

What will I do if my feet find themselves in the sand?


Making the grade

When I was in fourth grade, Mrs. Fenken gave me a D in penmanship. If she had seen my handwriting yesterday, she would have given me a C+.

I had to sign about 10,000 pieces of paper yesterday: durable power of attorney, medical power of attorney, living will, and an assignment of the judgment I won against evil Dave the contractor. Just placing the pen in my right hand was a challenge; my left hand, which lately has a problem with  underperformance, kept dropping the pen before it was strategically placed in the right. Self-consciously, with everyone looking on (and smiling indulgently which didn't help), I finally managed to position the pen properly, only asking for assistance in adjusting my thumb. Then page after page after page after page  was presented for my signature; I acquitted myself creditably if not completely legibly. It has been some time since only my hand was involved in the act of writing -- I use the entire arm.

Certainly deserving of a better grade, don't you agree? An A for effort, right?

C'est moi

Except my walker has wheels and handlebars...

After Saturday's apoocalypse, my home health aide agency suggested I get an alert system. Someone is coming over tomorrow morning to show me how everything works -- I'm curious to see what sort of contraption I have to wear and if I'll be able to manipulate it.



Hmmm. My nose, cheek, ear, and jaw hurt like the devil. I must have hit the side of my face on the shower chair when I fell -- I know my Bluetooth was knocked off my ear.

Quite uncomfortable, this. Ibuprofen may be required.

Déjà pu

Oh my GOD. Can you believe it? Yet again I was taken by surprise.

Cecilia was home with me, watching TV downstairs, when I felt the first pangs; I immediately messaged her asking for help. As the lift recliner slowly made its way up to ejection position, so did my landm-ass ready itself for an ejection of its own. Dear daughter number three helped me out of my chair and I made my way as carefully and as quickly as I could to the scene of earlier crimes. Crossing the bathroom threshold I knew I would not make it in time for the granny panties to come off so I made the decision to s(h)it as I had done before, and have Cecilia snip the sides of the befouled briefs after. All these thoughts were going through my mind as I approached my toilevated throne. My plan would have worked perfectly if I hadn't misjudged my approach -- I landed a skosh too far to the left and slid right off and into the shower.

You can imagine how discombobulated a scene this was. My right side was half in/half out of the shower, my left leg was pressed against the shower chair, my  left arm rested at an awkward angle on the seat of the shower chair, my left shoulder blade pressed horribly uncomfortably against a small shelf/seat built into the shower, my head just above the same shelf. Poor  Cecilia! She called her dad and sister and, at my request, placed two pillows behind my head. And there I waited.

There are few things worse than being on your back, stuck between toilet and shower chair, unable to move... and don't forget I had panties full of poo. I cannot describe my feelings of self-loathing and disgust.

John made it home at last and set about rescuing me. Out came the shower chair and pillows, in  came John. Little by little he managed to get me out of the shower and onto the bathroom floor where he was finally able to lift me to a standing position. I will spare you the details of the cleanup.

Monday I will call the agency and arrange to have a caregiver on Saturday and Sunday. This way  John and Cecilia will be able to have time away without worrying; if Cecilia elects to stay home she won't be faced with such a scary situation.

I have no shame

In the news

Study Says Brain Trauma Can Mimic A.L.S.

In the 71 years since the Yankees slugger Lou Gehrig declared himself “the luckiest man on the face of the earth,” despite dying from a disease that would soon bear his name, he has stood as America’s leading icon of athletic valor struck down by random, inexplicable fate.
A peer-reviewed paper to be published Wednesday in a leading journal of neuropathology, however, suggests that the demise of athletes like Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.
Although the paper does not discuss Gehrig specifically, its authors in interviews acknowledged the clear implication: Lou Gehrig might not have had Lou Gehrig’s disease.
Doctors at the Veterans Affairs Medical Center in Bedford, Mass., and the Boston University School of Medicine, the primary researchers of brain damage among deceased National Football League players, said that markings in the spinal cords of two players and one boxer who also received a diagnosis of A.L.S. indicated that those men did not have A.L.S. They had a different fatal disease, doctors said, caused by concussionlike trauma, that erodes the central nervous system in similar ways.
The finding could prompt a redirection in the study of motor degeneration in athletes and military veterans being given diagnoses of A.L.S. at rates considerably higher than normal, said several experts in A.L.S. who had seen early versions of the paper. Patients with significant histories of brain trauma could be considered for different types of treatment in the future, perhaps leading toward new pathways for a cure.
“Most A.L.S. patients don’t go to autopsy — there’s no need to look at your brain and spinal cord,” said Dr. Brian Crum, an assistant professor of neurology at the Mayo Clinic in Rochester, Minn. “But a disease can look like A.L.S., it can look like Alzheimer’s, and it’s not when you look at the actual tissue. This is something that needs to be paid attention to.”
The finding’s relevance to Gehrig is less clear. But the Yankees legend had a well-documented history of significant concussions on the baseball field, and perhaps others sustained as a battering-ram football halfback in high school and at Columbia University. Given that, it’s possible that Gehrig’s renowned commitment to playing through injuries like concussions, which resulted in his legendary streak of playing in 2,130 consecutive games over 14 years, could have led to his condition.
“Here he is, the face of his disease, and he may have had a different disease as a result of his athletic experience,” said Dr. Ann McKee, the director of the neuropathology laboratory for the New England Veterans Administration Medical Centers and the lead neuropathologist on the study.
Gehrig’s name does not appear in the paper; his case was discussed in interviews merely as an illustration of the new uncertainty surrounding cases resembling his, said Dr. Robert Stern, who serves with Dr. McKee as co-director of Boston University’s Center for the Study of Traumatic Encephalopathy. The cause of his disease will most likely never be determined because his remains were cremated, and now lie in Kensico Cemetery in Valhalla, N.Y.
More significantly, both doctors said, the finding solidifies a long-suspected connection between A.L.S.-like motor disease and head trauma experienced in collision sports and combat.
“People are being misdiagnosed clinically while they’re alive as having A.L.S. when in fact they have a different motor-neuron disease,” Dr. Stern said. He added, “Scientists will be able to get at a faster understanding of the disease in general, and therefore effective treatments, by knowing more about who’s at risk and who’s not.”
According to the A.L.S. Association, up to 30,000 people in the United States currently have A.L.S., an incurably fatal disease among primarily 40- to 70-year-old men that results in the swift and steady atrophy of all voluntary muscle control. Gehrig was its first prominent victim, dying two years after his 1939 diagnosis; some others, like the British physicist Stephen Hawking, now 68, can live for decades with fully functioning brains inside bodies that have wasted away.
The new finding could be double-edged for organizations fighting A.L.S.: it sheds some light on possible causes and research avenues, but also suggests that Gehrig might not have had it.
“It’s extremely interesting — it builds a more interesting picture, but what this all exactly means about how the disease plays out requires further investigation,” said Dr. Lucie Bruijn, the chief scientist for the A.L.S. Association. Dr. Bruijn described Gehrig as “an important fund-raising tool,” similar to the actor Michael J. Fox having Parkinson’s disease.
“It’s a name and a face that get people to understand what kind of a disease this really is,” she said. “It makes it more personal.”
A.L.S. in the N.F.L.
A link between professional football and A.L.S. follows recent discoveries of on-field brain trauma leading to dementia and other cognitive decline in some N.F.L. veterans. Dr. McKee and her group identified 14 former N.F.L. players since 1960 as having been given diagnoses of A.L.S., a total about eight times higher than what would be expected among men in the United States of similar ages.
However, the doctors cautioned, the existence of the increased number of A.L.S.-like cases should not create the same level of public alarm as the cognitive effects of brain trauma, which affect hundreds of former professionals and perhaps thousands of boys and girls across many youth sports.
Recent epidemiological studies have suggested that brain trauma in sports can be a risk factor for A.L.S.; for example, a 2005 paper found that Italian professional soccer players had developed the disease at rates about six times higher than normal. Studies have also linked service in the United States military to higher risk for A.L.S., possibly because of battlefield collisions and blast injuries.
The study, to be published Wednesday on the Web site of the Journal of Neuropathology & Experimental Neurology, represents the first firm pathological indications that brain trauma results in motor-neuron degeneration, and that the resulting disease (at least in the three men studied) is actually not A.L.S. It is a different disorder with different markings, specifically a pattern of two proteins in the spinal cord that compromise nerve function.
Dr. McKee had already found 12 deceased N.F.L. veterans to have had chronic traumatic encephalopathy, a progressive disease in brain tissue that results in cognitive impairment and eventually dementia. Two of those men — Wally Hilgenberg, a longtime linebacker for the Minnesota Vikings in the 1970s, and Eric Scoggins, who played only three games at linebacker for the 1982 San Francisco 49ers — also had A.L.S. diagnosed by their physicians.
When Dr. McKee examined the spinal-cord tissue of those men, as well as a former boxer who had A.L.S.-like symptoms, she found dramatically high levels of tau and TDP-43, two proteins known to cause motor-neuron degeneration. She said that they would appear in the cord as a result of blows to the brain, with the proteins probably traveling down the spinal cord, rather than direct injury to the spinal cord itself.
Dr. McKee said that because she has never seen that protein pattern in A.L.S. victims without significant histories of brain trauma, she and her team were confident the three athletes did not have A.L.S., but a disorder that erodes its victims’ nervous system in similar ways. McKee added that finding the distinctive pattern in all three men with A.L.S. symptoms was more than enough pathological evidence to make her conclusion.
“If we can create this in laboratory mice, which are easily genetically altered and breed quickly, we can learn about the pathogenesis of this disorder, and then provide treatment,” Dr. McKee said. The consensus among experts is that brain trauma is almost certainly not solely responsible for diseases like this.
Those afflicted probably have genetic factors leading to susceptibility, with concussions serving as catalyst. In that regard, some doctors said, years from now athletes could be tested for the gene that leaves them vulnerable, not unlike how some today check for sickle-cell trait.
The Gehrig Mystery
More than any other American athlete, perhaps even the player who eventually broke his consecutive games streak, Cal Ripken Jr., Lou Gehrig has come to symbolize a commitment to playing every day, especially through injuries. That renown partly derives from well-documented incidents in which he sustained significant concussions but continued to play in ways now known to be dangerous.
The most notable came in June 1934, when, in an exhibition game, Gehrig was hit with a pitch just above the right eye and was knocked unconscious for what was described in news reports as five minutes. (He was not wearing a batting helmet; such protection was not meaningfully introduced in the major leagues until the 1940s or required until 1958.) He was removed from the game.
Despite a headache, a doctor’s recommendation that he sit out and a bump on his head so large that he had to wear one of Babe Ruth’s larger caps, Gehrig played the next day against the Washington Senators to continue his streak at 1,415 games. “A little thing like that can’t stop us Dutchmen,” Gehrig told a reporter, according to Jonathan Eig’s definitive biography of Gehrig, “Luckiest Man.”
In 1924, during a postgame brawl with the Detroit Tigers, Gehrig swung at Ty Cobb and fell, hit his head on concrete, and was briefly knocked out. While playing first base against the Tigers in September 1930, Gehrig was hit in the face and knocked unconscious by a ground ball. He was knocked out again by an oncoming runner in 1935.
Those are the four incidents in which Gehrig’s being knocked unconscious was notable enough to be reported in newspapers. He most likely sustained other concussions that were never noticed or considered meaningful — for example, when he was hit in the head with a pitch during a 1933 game against Washington but continued playing — either in baseball or while serving as a halfback for Commerce High School in New York and later Columbia University.
“Obviously he played in the days before helmets, and he led with his head and with his shoulders, certainly on the football field,” said Mr. Eig, adding that he found no record of brain injuries in news reports of Gehrig’s football career. “On the baseball field he got knocked around a bit because he could be klutzy. Given the barnstorming he did in the off-season and his football career and style, there’s no telling how many additional shots to the head he took.”
Gehrig’s handling of injuries inspired reverence among fans and the news media. Concussions then almost resembled cigarette smoking, in that what is now known to be harmful was in Gehrig’s time considered benign, even charming. An advertisement for Camel cigarettes that filled the back page of Life magazine included various testimonials to “Larruping Lou’s” playing through injuries, including the 1934 incident.
“Another time, he was knocked out by a ‘bean ball,’ yet next day walloped 3 triples in 5 innings,” the ad reads. “Gehrig’s ‘Iron-Man’ record is proof of his splendid physical condition. As Lou says: ‘All the years I’ve been playing, I’ve been careful about my physical condition. Smoke? I smoke and enjoy it. My cigarette is Camel.’”
The End, and Legacy
Gehrig showed the first signs of degenerative motor disease in 1938, when his hands began to ache and his legs and shoulders gradually weakened. Gehrig’s rickety spring training in 1939 indicated to even casual observers that something was quite wrong; after a poor April, on May 2, Gehrig told Yankees Manager Joe McCarthy that he would not play that day against Detroit, ending his streak at 2,130 games, dating back 14 seasons. He rested for a month before seeking some answers at the Mayo Clinic in June.
The diagnosis was amyotrophic lateral sclerosis, then a virtually unknown disease that doctors explained to the public as a form of “infantile paralysis” resembling polio. It had no known cause, and was not described as fatal. Gehrig’s baseball career was immediately over, and two weeks later, on July 4, he was honored at Yankee Stadium in an on-field ceremony between games of a doubleheader.
Speaking through microphones to more than 60,000 hushed fans, Gehrig took the scene and called himself “the luckiest man on the face of the earth” — a remark that quickly symbolized his humility and, of course, just how unlucky the slugger truly was. Gehrig’s once muscular frame, so seemingly perfect that only a few years before he had auditioned to play Tarzan in the movies, quickly deteriorated.
By the time Gehrig died two years later, A.L.S. was already commonly referred to as Lou Gehrig’s disease, a disorder known as much for the player as for the seemingly arbitrary way in which he was chosen to die from it.
The Mayo Clinic retains Gehrig’s medical records but has never disclosed them per institutional policy, a spokesman said. A neurologist who was allowed to inspect them years ago, Dr. Jay Van Gerpen of the Mayo Clinic in Jacksonville, Fla., was not permitted by the clinic to be interviewed for this article.
In considering how Gehrig’s disease could be pinpointed, Dr. McKee of the Boston University group said that if Gehrig had been embalmed, rather than cremated, she theoretically could examine remaining tissue. He might have had A.L.S., like the more than hundreds of thousands of Americans who have had it since, and who have perhaps taken some solace in how such a famous and admirable man as Gehrig had it, too. Or, given his history of brain injuries, Gehrig might have been like Wally Hilgenberg and the growing number of athletes who, as science evolves, stand with increasing company as testimony to concussions’ shocking cost.
“Lou Gehrig wanted to know everything possible about his own illness — he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease,” Mr. Eig said. “He wouldn’t stick his head in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others.”


Bad-ass humor

Back in the day, women who worked in offices complained of "secretary
spread," the widening of their hindquarters that was the result of
sitting all day. You have already been treated to some of my witty
equivalents: walr-ass, land m-ass, etc. I came up with one today i
think best describes my specific affliction. Ready?


Ba dum bum-p.

I crack myself up.

Take a load off

 You know the saying "moderation in all things," I'm sure.  Sadly, I am guilty of being immoderate in many ways -- laughing, crying, posting about my bathroom activity -- and now I must confess to one more activity in which I overindulge: sitting. At any time, you will come upon me sitting, whether it be on the potty, the shower chair, the rollater, in the dining room or kitchen, in a wheelchair, but most often in  my lift recliner.

Sitting is no longer something I do to rest after being busy on my feet all day. Sitting is something I do because it's all I can do. Well, I guess I could lie down, but there are issues with lying down that will be discussed at some other time. Back to sitting.

I have always been prone to some mild sciatica, only bothersome after periods of prolonged sitting. Always on the left side, the discomfort starts in the lower back and travels down to my toes.  Shifting my position used to help, my arms and legs, bottom and torso all working together to alleviate the pain. These days I rely primarily on my left leg to reposition itself to reduce pressure; HOWEVER; this movement results in the rest of my body shifting position just enough to become problematic. My right cheek moves slightly forward, resulting in my upper body sliding minutely down which leaves my head just below where it is comfortable on the headrest. I can endure this for only so long before I require readjustment.

To make matters worse, the fabric covering the lift recliner has begun to feel like the bristly side of a scrub brush -- especially the headrest and right armrest. Solution: cover the chair. A silver satin sheet adorns the headrest and back (very soft and cool as well as visually pleasing) and a thick pink face towel is draped over the armrest. Combined with the pillows (yes, plural) on the footrest, these accents transform the uncomfortable, overused chair into a thing of, uh, not beauty, more like a thing of trailer park.

Eat your hearts out.  Immoderately.


Calling all analysts

A recent dream, for your reading pleasure.

I'm sitting in a small courtyard bordered on all four sides by loggia. My eyes are closed and I'm resting in a lounge chair. A friend comes into the courtyard and puts something in my lap; my eyes are still closed but I can tell I am holding soft little puppies, the one on the left is chewing my index finger. I open my eyes when the puppy bites hard and scratches my hand -- four long scratches and two short scratches -- and I see they are not puppies at all, they are little black kittens and they run to one side where, sitting in the loggia, are six black Labradors and two black cats. All of the animals, dogs and cats, walk out of the courtyard.

I'm in a room filled with random objects: furniture, equipment, artwork, and boxes. Everything is being moved around in preparation for an audit. Two technicians keep asking me if the auditors are coming on Monday; I won't confirm or deny because I know the technicians are hiding something that the auditors need to find. I leave the room.

I pass a bar, a beautiful and elegant structure made of wood. The bartender is suggesting drinks and I choose one that looks like watermelon juice -- pink but clear -- but tastes more like a sweet wine. Glass in hand I leave the bar and follow the maître d' to the booth where my friends are waiting. We eat and talk and there is debate over the existence of a street named for a princess. I insist I know the road and leave, getting into my car. Of course the road exists and I drive the full length of it. I turn right at the corner and the road is littered with little sections of log -- no matter how I try I can't avoid driving over them and the jostling and scraping unnerves me.

I take a right at the next corner; this street is flooded and the rushing water carries my car forward. Too late do I see a man in the water trying to rescue a white dog with brown spots; the man must roll out of my way but the dog is fine and I give him a treat. The man, sitting on the side of the road, mutters oaths at me. I apologize but it doesn't help.


More love, love, love

This one is not just a favorite, it is my absolute favorite. Ingrid Bergman is exceptional, as always.



Another favorite, but on the opposite end of the spectrum from the earlier post. If you are straitlaced or ultraconservative -- don't watch. It will certainly offend you.

Love, love, love

One of my favorites. Definitely worth a look.

Mrs Palfrey at The Claremont

Warning: laughing may be hazardous to your health.

Twice today I laughed so hard I lost my balance. The first time (in the living room), John and Becky caught me as I teetered and got me safely to a chair. Later in the afternoon (on the front porch) they tried their best to contain me but were not successful; they did, however, manage to soften the fall.

Each time I walk -- on my own or supported by caregivers or walkers -- I'm amazed that I CAN walk considering how weak my legs are. If I start laughing, the strength leaves my legs and moves up to my lungs to support bulbary immoderate laughter, laughter which is the result of some unintentionally (but wickedly) funny observation about my ability to ambulate. We try very hard to observe a no talking rule when I am on my feet but it doesn't always work.

I suppose sometime in the not too distant future I won't be walking at all and losing my balance won't be an issue. I hope the jokes are as funny.

One of my pet peeves

When I read this strip, it reminded me of my experience at the Burger King drive-through several years ago when I was ordering a healthy and nutritious dinner for my children. I asked for a small drink and was told they didn't have small, only medium and large. Rather than accept this ridiculous labeling of sizes, I asked how it was possible to have a medium if there was no small; the little electronic voice simply repeated there was no small, only medium and large. I asked if the medium was the smallest they had, the electronic voice responded yes. Smiling triumphantly, I said I would have the smallest drink. The electronic voice then confirmed my order, adding at the end, "one medium drink."



Thinking ahead

None of us lives forever, but it's not every day you are told you have a terminal illness. When I was first diagnosed with ALS, my already twisted sense of humor became even more twisted -- dare I say gnarled, even misshapen -- as I sought to come to grips with Louise's intrusion into my life.

Not long after the diagnosis I started thinking about my "disposal," concluding (at the time) that I would likely be cremated. My ashes were to be housed in a large Ziploc bag, then placed in the Chanel shopping bag I've been saving since January 2007. I joked that I would stay with each daughter for four months throughout the year.

Understanding that the disposition of my remains as I outlined above is probably not in accordance with various state and local laws, and desiring at this point to donate my carc-ass to further ALS research, I hit upon a great notion: Lynne shall purchase a quantity of colored sand (preferably purple), fill small Ziploc bags with same, bring them in the Chanel shopping bag to the memorial service and there distribute them. My creative forward thinking is not appreciated by everyone, but Lynne chuckled and even offered a more twisted (and far superior) idea: she will distribute not little bags of colored sand, but individual straws of Pixie Stix! I very literally laughed out loud at her suggestion.

For the record, everybody attending my memorial service better have a smile on their face, a drink in their hand, and a funny story on their lips. Otherwise don't bother.


Show of hands

The dynamic duo (please admire the zebra pillow on which they sit).

Left-hand, looking very much like its ugly worse half.

The right -- uh oh, where is the thumb?

Found it, hiding under the knuckle of the index finger.

Be very, very glad I don't post photos of OTHER areas of my body that have undergone a metamorphos-ass.


Whole lotta somethin' goin' on

At the point where (I perceive) my throat, the back of my tongue, and my right ear meet, it starts. A sensation, not quite a tickle, almost like a silent buzz, the merest pinprick, alerts me and gives me two or three seconds to prepare. I grab my ever present WFH and bring it to my face just in time for the first cough, the first of several, after which -- having coughed every last breath out of my body -- I yawn, then gag; the back of my tongue positions itself in such a way that it creates a suction and attempts to draw out all that is vile from that region, which I am forced to try to expel in a very unladylike manner. Eyes and nose, not content to sit idly by, join in the fun by watering and running, respectively. More WsFH join the fray. Thank heaven I have an abundance of these as the unpleasantness described above occurred a number of times the past few days.


I don't think it is (yuck) saliva, it may be (more yuck) a drip so I am taking a decongestant. If it IS (yuck) saliva, I wonder if additional amitriptyline is warranted. Time for another phone call to the clinic.

Cat-ass-trophic Poetry

Apologies in advance.

A visit with friends, a special treat,
we were going out to eat!
Jenny helped me getting dressed,
I wanted so to look my best.
My top was the blue of robins eggs
but what to wear to cover my legs?
Black pants? No, that's all I wear.
But what was this? Did I dare
to wear the skirt combined with shorts
(that are unhappily known as skorts).
Jenny pulled and gave a tug,
she got them up but they were snug.
A change in my personal geography,
the result of suffering from ass-trophy,
which, instead of minimizing
made my butt increase in sizing.
This disease has not been kind
to my rather large behind.
I gave a sigh and put away
the skort, to wear another day.
I donned the pants with a wry smile,
I'll be wearing them for awhile.


Célébration de fiançailles

The happy couple.

The silly couple!

The sillier couple...

The Wallaces: Aunt Judy, Susan, John, Johnny

In seven months, Becky will be a Wallace, too!

Champagne through a straw. So classy.

Dad McGee and his three girls.

Aunts Susan and Wendy.

Matt and his beautiful mom.

Running girls: Jenny and Lynne.

Avec Stephanie...

et Philip...

Beautiful cousins Cecilia and Rachel.

Uncle Mike and I are not looking at the camera. Deep discussion. Wendy looks gorgeous.

Ryan and Wayne...

Elizabeth (and Rileigh!)


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