THE ODDS (Debbie Does ALS)


The daily double

Watching Jeopardy tonight was an exercise in frustration. Why? Because the sweet little old lady (who ultimately won) took FOREVER to select the next category. Very unkindly, I yelled at the tv and told the cow to speed it up. Jenny and John started laughing and offered up an hilarious image of ALS patients as Jeopardy contestants, the funniest image was how long it would take the contestants to push the button to ring in.

We are all twisted.


Out of the mouths of babes

"If I ever need anyone to spit in my hand, I know you're there for me."

-JM, to her mom



Alright boys and girls, it is time for another episode of Dreamin' with Debbie.

I am at an academic facility. A meeting I attended just concluded and I see Ellen Cochrane from the ALS Association. As I make my way over to speak with her, three women approach her and they begin to talk. Ellen invites them to her bungalow and I follow, thinking I will be able to talk with her. They go inside and I wait in an anteroom, occupying myself with my iPad. After what seems like a very long time, I gather my things to leave. At the same time, Ellen and her friends emerge and Ellen asks me to stay but I cannot.

iPad in hand, I begin the walk to my own bungalow, which is on the campus. I've never seen it and don't know exactly where it is, but every bungalow has the resident's name on the door. It's raining outside and I'm worried about getting wet. I am wearing high heeled boots, which seem inadequate, particularly when I have to go through a drain. I continue up a hill, confident I will find my cottage when I see a very well-appointed residence to my left. I am not surprised to see that it belongs to my darling Adam. At this moment, he calls me on my phone but our signal is sketchy and we lose each other.

My family and I are driving down the road to our house. Our progress is stopped, however, because the car in front of us won't move. I get out of the car, intending to walk the rest of the way but it is cold and raining so I get back inside.

I am in Norfolk. In the water. Yes, the water. An emergency situation exists further out, and I see waiters carrying trays, delivering drinks. I wonder how the waiters--who are wearing chefs' toques--manage to glide so gracefully back and forth, never spilling a drop. I then see they are wearing rescue flotation devices (shaped like small torpedos) on their feet, held in place by straps across the instep. I, too, am making my way quickly through the water because I am holding on to yet another flotation device, upon which stand John, Jenny, and Becky. My grip begins to fail, I let go...and start to sink. I'm afraid, but I know this is what has to happen.

That's it. The next thing I know, there's a knock at the door, and in comes good buddy Lynne.


Happy New Year's Eve

I took the new ramp for a test drive today. Fantastic. To all my friends who made all my home's entrances accessible, I thank you from the bottom of my heart.



A note of thanks

I hear hammering outside my window, not the hammering of a lovely little woodpecker, but the serious hammering of people who are building something. That something is a ramp, a ramp which will enable me to get into my house with ease.

Until recently I was able to climb (with lots of assistance) the single step from my front porch to my foyer. Louise was getting tired of lifting my legs, so journeys through the front door all but ceased. Lynne started making noise about a solution.

Coincidentally, several weeks ago, an email was received by the directors of the Fredericksburg Area Running Club (FARC) which begat a flurry of emails and ideas on how to support one of the club's members. Ultimately, the decision was made that support was best offered in the shape of a ramp. Yes, I am the fortunate member. I am touched and gratified by the good will exhibited by these kind people.

(It's worth noting that the hammering is occasionally punctuated by a curse. I'm envisioning some purple thumbs.)



A series of uncomfortable events

Have you ever had one of those nights? Where no matter what, something is just off?

I was perfectly situated in my lovely bed by 10 PM. Reading always puts me to sleep and this night was no exception; I began to drowse within the hour. John came in, turned off the lights, and put my iPad away. I settled back against my very inviting pillow and was out.

From my position on the bed, I'm not able to see either of the two clocks in my room, so I don't know what time it was when I woke up. It was pitch black outside my window, so I knew it was either very late or very early. Regardless, I woke up because the heat was oppressive. I listened for what seemed an eternity--the furnace roared without taking a rest. Not wanting to disturb him, but knowing I would go mad if I didn't find some relief from this heat, I called John. He stumbled, still mostly asleep, to the thermostat and adjusted it. It wasn't long before I noticed an improvement, and was able to go back to sleep.

Sleep was again interrupted when I moved my legs and the pillow under them shifted; my attempts at repositioning the pillow caused my blanket to get bunched up around my knees, leaving my feet exposed and cold. Poor John was called on a second time to correct pillow and blanket.

By this time, I was fully awake. I stared into space thinking about nothing and everything. I looked around the room and was not happy to see a giant spider walking on the wall across from me. My eyes started to sting, then water, tears running down my face. The idiot tickle teased, so naturally I began to cough, which caused my right arm to relocate away from its supportive pillow. Try as I might, I couldn't move my arm back.  To add insult to injury, my sleeve bunched around my elbow--very irritating, almost painful, because of the bunchy wrinkles (the sleeve, not the arm). The pillow behind my head also reacted to my coughing by shifting just enough to rob it of any pleasantness. I looked at the wall, but the spider was nowhere to be seen...very soon I was convinced it was walking across my chest. So there I was, arm and pillow out of position, tears drying on my face, with a spider walking on my defenseless lump of a body. Should I wake John a third time? I didn't have the heart.

I would say I tossed and turned the rest of the night, but we all know that would be a huge exaggeration. What isn't an exaggeration is that my mind tossed and turned and I did not get any real sleep for the next several hours.

Thank goodness I know how to dig deep and get through a tough course.



Fun with Dick and Jane

Thank you, Kenny and JR for my tasty treats.


Knight of the round tissue.

Believe it or not I found two stinkbugs in my house last night.

The first one was crawling on my window. I asked Courtney if she would please remove the bug, taking care not to smush it (because we all know what happens when you smush a stinkbug). She did, without incident.

Not long after, we heard something hit the inside of my table lamp. Courtney said it was just a moth, but I said--jokingly--that it was probably another stupid stinkbug. We both laughed, and Courtney said it would probably land on me after I went to bed.

Courtney is a wicked, evil cow. She'd been gone about half an hour when I looked up and saw THE STUPID STINKBUG on my blanket. Cecilia was downstairs with her boyfriend, Alex, so I sent her a text message saying I needed help. She was quick to respond but by the time she came upstairs the stupid stinkbug was no longer on the blanket. Carefully lifting the blanket off my feet, Cecilia jumped and made a face, and told me the stinkbug was on my foot. Knowing she wouldn't be any help, I asked her to get Alex.

Alex is a nice boy. He always comes in to say hello and always stops in to say goodbye. That is the extent of our relationship. I'm sure he was horrified at the prospect of removing a stinkbug from my ALSy feet. But he bravely entered my room, tissue in hand. Poor Alex. The stinkbug was no longer on my foot, it had crawled up onto the side of my shin. Evincing no great disgust, he very ably extricated the stupid stinkbug and summarily disposed of it.

Alex is my hero.



Spit or Swallow?

In the late 1970s on Saturday Night Live, Steve Martin played the character Theodoric of York, a medieval barber. During one skit, I recall the presence of a drool bucket. When it sloshed and spilled, my very sensitive stomach lurched and I felt utterly nauseous.

Fast forward 30 something years. I have been blessed with a disease that has wrought many changes, not the least of which is the overproduction of saliva. In the wake of my recent cold I seem to have ramped THAT up to the point where it is becoming problematic. As before, it causes a little tickle in my throat, which leads to a cough, then a yawn or a sneeze, which results in a runny nose and watery eyes. Every damn thing on my face leaks some sort of foul fluid. And my sensitive stomach is repulsed.

I don't have a drool bucket, I have a nasty washcloth as well as the floor of my shower (bleah). Gallons of thick, bubbly, viscous slime are daily expelled into these waiting mediums. On a happier note, just as I see things in my neighbors' trees, so, too, do I see things in these expulsions. Yes, I am thoroughly off my rocker.

These lessons in humility are becoming tiresome.



I'm back

Yes, it's me. Well, actually it's Courtney, tonight's caregiver. Still unable to make my dictation software understand any but a few words, I have called in the reserves to be my fingers. Hopefully I will remember all of my brilliant insights until she arrives to put finger to keyboard.

More to come...

Postscript: the preceding was kindly reviewed and edited by my own Jen-ographer.  I consider myself fortunate indeed to have so many helping hands.  


Hair today, gone tomorrow

I have been going to the same hairstylist for about five years. For the most part, my "go to the salon" outfit consisted of jeans, a salon-friendly top, pointy-toed heels or boots, and a big purse--so big that it got its own chair. On two occasions I showed up in sweaty running clothes--poor Ann. More ALS friendly clothing became the standard about 18 months ago, until today.

It's been almost two months since I saw Ann; there are stairs in her shop and I don't do stairs anymore. We tried the home salon of one of her co-workers--that only worked one time. Ann is so kind she offered to come to my house, so we made a date for this morning.

What little dignity I possessed disappeared at 8:52 this morning. My beautiful, lovely stylist came to my house but I was not yet ready. I was still in bed with messy hair, watery eyes, dry mouth and cracked lips, a vision to behold. Adding to my allure were my practical--though hideous--briefs. Before John rolled me to the bathroom, Ann tactfully excused herself.  I emerged, still clad in my pjs, light years away from the be-booted and be-pursed woman of only a few years ago.

Thank you, Louise for forcing humility down my throat.  Do what you will, I still have great hair.


The cold.

The sore throat is gone and SO FAR the chest remains unmolested. Unfortunately there is STUFF (bleah) at the back of my throat where it meets my nasal passages and my speech has been adversely affected. If I didn't have it before, I definitely have an ALS accent now. Consequently I cannot dictate because my voice recognition software doesn't speak my new language.

It's not likely I will go back to my former beautiful speaking voice so I need to move to the next level in communications technology. At my last clinic, the speech therapist made some noise on this subject so a phone call is on my to-do list. I just have to find someone to make the call for me.

(The preceding was kindly typed by 3:58 marathoner Mrs. John Wallace.)


Oh no...

Yesterday morning I woke up with a sore throat, specifically a sore left throat. It hurt to swallow, oh, how it hurt. As the day progressed the pain abated but, as I got ready for bed, it returned in full force. I popped a pain reliever and went to bed, and dreamt that I was fainting. This morning, the right side of my throat complained along with the left. I now have the sorest of sore throats. Bleah.

What I am not looking forward to is the chest congestion that ALWAYS follows a sore throat, at least that is my experience. My cougher isn't coughing so well these days.


One of my favorite recipes (a recipe for dasister)

 1 beautiful sister
 2 strawberry champagne cupcakes
 4 new movies
 1 bowl of popcorn (with extra butter)
 Mix all together and warm at room temperature for six hours.
 These are the ingredients for a perfectly wonderful day.

 Thank you, Wendy. I love you.



My left shoulder and collarbone are feeling a mite poorly today. Why, you ask? Well, it's because my two curly ALS toes decided to drop me on my AL-ass last night. It wasn't so much the fall that caused the shoulder/collarbone complaint, it was the hoisting up from the floor--my caregiver's only recourse was to hook me under the arms and lift with all her might. Clearly, I need to work on my upper body strength if I'm going to pull this type of prank in the future.


I let her win

Another thing my darling Jenny does during our morning repast is stretch and straighten my right arm; it feels wonderful after a long night of being  bent across my stomach. Even better, she stretches my thumb away from my hand. Pure bliss.

While she was stretching my thumb this morning, my dear girl decided we should thumb wrestle. Guess who won.

More wisdom

Working in the outreach department of our regional library means that Jenny must visit a number of retirement homes. The stories she tells about the residents are hysterical: the woman who has three books and doesn't NEED anything from the library, the old man who hit her with his cane (she was not harmed), the man who likes Disney Channel DVDs, and others. Her telling of these encounters is so comical and I laugh like the immoderate fool I am.

Jenny had just given me a sip of coffee when she told me she was visiting Disney Channel man today, to bring him new episodes of The Suite Life of Zack & Cody. I found this so absurdly funny that I choked on my coffee, losing the entire mouthful.

Poor Jenny felt so bad, and uttered a new nugget of wisdom: "the journey from joke to choke is very short."


Not in a tree...

I had one hell of a dream last night. Here, in no particular order, are the events that occurred in my Land of Nod.

Cast of characters:
ALS patient 1
ALS patient 2 (very pregnant)
patient 2's caregiver
patient 2's OB/GYN
team of random neurologists
random group of Becky's friends
a couple of young mothers with their small children
a  group of random over-50s, including a man I met at the bank in 1997 or 98 and Craig T. Nelson.

I was on a train, sitting near ALS patient 1. He wanted to listen to his iPod on the train platform (which, curiously, floated beside the moving train), so we both went out and sat on the metal bench outside the door to our car. Neither of us were in wheelchairs; he sat comfortably on the bench, arms outstretched and legs crossed. I was using my MacBook, typing with both hands.

Back on the train, I sat with patient 2 and her OB/GYN, who asked me the date of my last breast exam. When I said it was more than a year ago, he performed one right then and there. Patient 2 and I chatted casually until the doctor informed me there were several lumps  under my left armpit.

Patient 2 and I went out to the platform only to find it was a marshy wetland. Walking through this made patient 2 very tired. Her strapping caregiver appeared and carried her back as I followed. There was a moment of panic because we could not find the door to our car. When the door (with a large number 3) was located, everyone was relieved.

Now  seated on the train, I plugged in my laptop; the outlet was unique as it accommodated any sort of plug. Patient 2's caregiver asked if he could use the outlet, when I said yes he did a fist pump. I yelled, "Project 2600!" which drew appreciative smiles from those nearby.

At the end of the car was a group of Becky's friends. They were goofing around near an open door when one of them lost his grip. He was consumed by blue electric light; as the train moved on the blue light grew smaller. Becky was sad and told me this particular friend was special to many people.

I saw that  patient 1 was back in his seat.

My sister and I were visiting churches, looking for living saints. We decided not to go to Notre Dame because all the saints there were already dead.

After taking a shower, I gathered my clothes and was distressed because they were wet. Becky pointed out some dry benches (shaped like pieces of pie) and I arranged my clothes.

Also on the benches were many pieces of loud, gaudy jewelry intended for fashion dolls. These caught the attention of a group of little  Pakistani girls (not sure why I knew that) and their mothers, so I gave the jewelry away to them. As it happened, we were next door to the jewelry factory  and were able to see the jewelry making process: the components of each specific piece were in a tray which was placed in front of a worker (dressed a la Sailor Moon), after a piece was complete a new tray appeared.

One of the mothers was very pale. Her name was Lily. Several of the little girls were also quite pale,  due to white makeup that stopped at the neck.

A neurologist wheeled me down the aisle, asking me questions like, "can you walk?" "do you burp?" etc. He and his team advised me my responses would be judged by how long I took to answer. All the neurologists looked alike. As we made our way down the aisle, I noticed a little bag on the floor; I could not tell what was in it but I thought it was a stuffed animal.

Suddenly a woman called out that her baby was missing. Little toys scattered all over the floor. I suggested someone look in the little bag but, when they did, all they discovered was a large piece of candy shaped like a star.

I was taken to a room where Jenny was waiting for me at a table. On the table was a Toshiba scanner, a gift premium I received with a recent purchase. As Jenny and I admired  the scanner, a small crowd of people over 50 gathered behind us. Included in this small crowd were Craig T. Nelson and a man I met at the bank in the late 90s. I looked over at Craig T. Nelson, then at the man...who was smoothing my hair. When he saw me look, he began smoothing Jenny's hair, too.

This is where I woke up. Thoughts?



No Kevin Bacon

During breakfast this morning, Jenny told me one of the women in my neighborhood wanted to know when she might visit. Curious to know how she contacted Jenny, I asked if they were friends on Facebook. Smiling, Jenny said that my neighbor asked her son to ask his girlfriend to ask her brother  to ask his ex-girlfriend (Jenny) to ask me. Talk about six degrees of separation.


It's not the drugs, it's my imagination. Really.

From the no-longer-so-stupid chair in my room I can look out the window and see my neighbors' tall fir trees. You will probably think I'm nuts when I tell you that each day I see something in the branches: a pirate face, a clown face -- each day brings a new image. Today I saw the outline of a cat's head,  one that might have been drawn by Modigliani. Imagine the face below tilted sideways and with pointy ears on top of its head, that's what I saw in my neighbors' tree. Oh, and a maniacal goldfish.



Maybe a couple of beer koozies?

You know what I really, really don't like? I don't like how dry my mouth becomes when I sleep.

In order to breathe comfortably, I sleep with my head and chest elevated (thank you, happy hospital bed). Sleeping this way, however, causes my jaw to drop and my mouth to open, resulting in a lot of dryness. Throw in the nightly amitriptyline and you have a hot, dry mess. I wake up periodically throughout the night, conscious of discomfort, and try to close my mouth and stimulate some salivary succor. Any relief is short lived -- once I fall back to sleep my jaw drops and the cycle repeats.

What I need is a chin strap to hold my jaw in place. Neoprene looks to be the most comfortable, stretchy and soft.  I doubt chin straps are available at my local CVS so I will order one. In the meantime I'll have to be creative. Any suggestions?


Pearls Before Swine

Girls tough

Jenny, to me, as she fed me an orange:  Bringing breakfast  to you is like Tuesdays with Morrie because I come bearing food.
Me: But I do not impart any words of wisdom.
Jenny: Well, I think words of wisdom. Does that count?

In other wisdom news, our very own Rebecca Sophia ran her first marathon in 3:58. (And that is So-FEE-a, not So-FIE-a, which is how they pronounce it down here.) Congratulations, Becky!


Once upon a time....

Good friends, good race, good times. Quantico half, September '06.

So many miles...

 Yesterday I had a lovely lunch with my dear friends Mel and Suzanne. The restaurant -- one of our favorites -- is located in Woodbridge which meant someone (Mel) had to come fetch me. Taking into account the fact that she lives in Northern Virginia, it was quite a haul for her.

I am very blessed to have family and friends who are willing to drive the distance IN TRAFFIC. Recall  the visits/outings with my sister -- we are talking several hundred miles. Not only  is the time spent together a gift, so is the time spent driving here and then driving home.

I wish I could still drive so I could reciprocate the kindness, but I think I need more than honey at this point.


On these dates in history

Monday, November 8, 4:17 AM
Monday, October 11, 5:33 PM
Wednesday, September 29, 4:59 PM

What do these dates have in common? I will spare you the scatological details, but I am getting VERY tired of this shit.

More dreamin'

 Last night I dreamt I was in the lobby of a big commercial office building. The floors were polished to a glossy sheen, the windows sparkled,  the wheelchair ramp -- which provided access to the elevators -- curved from the left side around to the right. There were quite a few people moving about; as I made my way I realized I was walking. Looking down at my feet I discovered my lower legs and feet had been replaced by aluminum poles and thick wedges made of gray rubber. The rubber was flexible enough to simulate a heel strike and toe push, and  each wedge was wide enough to provide stability. Amazed, I called to everyone to see how well I walked. A man standing nearby pointed to me and told his companion that I'd done a lot of marathons.

If only it were that easy.


No excuses

There are one or two -- or  more -- occasions in my life where I am guilty of not living up to my own standard.  Memories of these actions reside in a dark little spot in my  mind and when I think of them I am ashamed of myself; if I could go back in time I would correct my behavior.

I recently committed another thoughtless act and I am more ashamed of myself than ever before. My thoughtlessness was unintentional but that is no excuse, I erred and hurt someone I love very much.

I am so very sorry.

Mr. and Mrs. John Wallace

 October 27 was Becky's birthday and I was at a loss about a gift. As is the case with all my daughters, she is very particular and it is never easy to find just the right thing. Because she used to play with Barbies when she was little and because of her upcoming wedding, I decided a wedding dress Barbie would be fun and appropriate.

Becky visited two days later and we gave her the package; she opened it and laughed and told us it was perfect. She started to say something else but,  when she started to cry, asked Jenny to finish for her. Jenny then told us that Becky, John Wallace, and John Wallace's father and sister were coming out to the house on Tuesday, November 2, and that Becky and John would be married.

This was a "just in case" wedding. We are very big on insurance and that's what this is. The March wedding is still on and I plan to be there.

Aren't they a lovely couple? Actual photos to be posted upon receipt.

Guess who

I'm sure you remember my entry about fat ALS Bowbie. Well, here she is...


No more wax and feathers...

I wish this was me.


McGee's Marauders

 You couldn't have asked for a better day. Perfect weather, minimal traffic, flat course. And best of all, incredible women. We had a wonderful time maraudin'.


From Jenny

Hospital bed is happy.

Not a poppy, but pleasing to the eye nonetheless

 I received this Christmas cactus as a gift in 2004. From 2004 until 2007, it produced an occasional flower but nothing spectacular. From May 2007 until just a few weeks ago it did not produce a single flower. When I retired in May I brought it home and put it in the serenity room; I'm embarrassed to admit I didn't pay very much attention to it. You know, out of sight, out of mind.

 My little plant was watered but not regularly. Shortly after a recent watering I was  surprised and happy to see little buds all over. After three years of nothing, now this!

Is this the secret to successful Christmas cactusing? Heaven knows I've never had a green thumb.


Quelques choses

  • I love my hospital bed. Consequently, I hate my stupid chair less than before.
  • I am officially covered by Medicare. I don't feel any different.
  • Today is a very special day but I can't say why. Just trust me.
  • Last June I ranted about a stupid girl who parked in a handicapped space because she did not know how to parallel park. This comic reminded me of that episode:


Apologies in advance

Today, after my shower, my new aide asked me if I wanted lotion and, if so, how much. I told her my preference was full coverage but not gloppy. About a half an hour later, Becky came into my room; I took her hand while we talked and she remarked that mine was very soft.

It occurred to me that, in my present condition and with the gallons of Jergens shea butter lotion applied to my skin on a regular basis, I am Buffalo Bill's dream girl.



Ten years ago Becky was a homecoming princess and I drove her and her date to the dance. Not wanting to smell like cigarettes, I decided I would have one later.

I'll have one later.  Or not. 

Sweet repose and rest?

 Almost every morning I wake up when I hear Cecilia getting ready for school. I float in and out of a light sleep until she slams the door on her way out. Most mornings, but not this morning.

There was quite a bit of noise coming from Cecilia's bathroom and I was afraid a meltdown was in the offing. When the door shut I was convinced I heard crying, but it was hard to tell due to the racket made by the traffic outside. After a few moments I realized the crying was actually John snoring in the other room. I breathed a sigh of relief and relaxed, ready to return to dreamland. No such luck. There was now a garbage truck on the street and the smell of old garbage wafted through my open window and assaulted my olfactory sense. When Cecilia finally emerged from the bathroom I called to her to please close my window. She did, then slammed the front door and went to school. 

Once again I attempted to fall asleep. No more odors, no worries about meltdowns.  Peace. Until I became aware of a high pitched buzzing near my right ear. I turned my head to the right only to hear  the buzzing on the left. I turned left and -- you guessed it -- the damn thing was on the right.  No longer able to lift my arms to that level and terrified the buzzing thing was also a stinging thing, I rocked my head back and forth several times hoping it would go away. Either it went away or I killed it because the buzzing finally stopped.

About this time I noticed the beginnings of a cough tickling my throat, and cough I did.  (I hope it was not the buzzing stinging thing!) No sooner did I finish THAT than my eyes started to sting and burn; this happens frequently with no provocation. I squinted my eyes as tight as I could but found no relief. To add insult to injury, my bladder complained that, if I was awake, it needed to be emptied. Unable to turn and see the bedside clock, I had no idea what time it was or how long I'd have to wait until Jenny arrived.  Happily, I did not have to wait long. The poor dear went right into action,  quickly tending to my various needs. She deserves a medal.

Loss of functionality sucks.


Jenny, to me, as we are eating breakfast, "This is just the right amount; we split it and I eat half." She cracks me up.



  I am composing this while all alone in the house. I don't want anyone to hear what I'm saying and I will not publish this entry until later...

I've been aware for several weeks that my swallowing is different. No, not when I drink. When I eat. This morning I choked on a tiny piece of sausage; I was not able to speak and it took several very long seconds before I could inhale. I know it scared Jenny and I did not tell her what it was that made me choke. She asked if it was saliva and I said yes. I took smaller bites after that but was conscious of several potential chokers  that were not swallowed properly.

When John fed me lunch I did not choke, but I was aware of continued problematic swallowing.

I must take care.

A little night music

Owl are our our our our our our our our our our The preceding is what my voice recognition software thought Stella was saying as she barked at a truck. Just thought you'd like to know.


This morning, as Jenny and I ate breakfast, we listened to some lovely music from Loreena McKennitt. When Dante's Prayer came on, Jenny looked at me and said it might be a song to use for... the rest of the sentence remained unsaid. I knew what she meant and she knew I knew what she meant.

What she meant was my memorial PARTY which, since I am a control freak, I am planning in advance. I've begun collecting songs and invite any and all suggestions. One of the songs is attached for your listening pleasure.

I look forward to hearing from you!


My practical progeny

 Dear daughter Jenny comes by every morning to help get my day started. Most mornings she brings breakfast -- sometimes a bagel, sometimes a breakfast sandwich -- accompanied by a fruit and a cup of coffee.  She patiently feeds me while she enjoys her own breakfast, and we have a lovely little chat.

If you know Jenny, you know she has a razor-sharp sense of humor and is usually five steps ahead of anyone in a conversation. Trying to eat when Jenny is "on" is very difficult; trying to talk, laugh,  and eat is almost impossible. Under these circumstances I am very  hard to understand, but Jenny says I'm not  to worry -- she makes all her friends talk with their mouths full so she can better interpret my garbled speech.

That's my girl.


I really do enjoy this comic strip.



It was like old times. A beautiful October afternoon at Pratt Park; warm in the sun but  quite cool in the  shade. A breeze blowing in our faces and hair as we made our way around the track, talking, trying not to run each other off the course. This time, however, when we stopped it was not to tie a shoe lace or refill the water bottle, it was so Lynne or Cathy could remove a pesky bug from my face. During the walk breaks I slowed down to match their pace, otherwise I kept my wheelchair in fifth gear to try to keep up. The two of them gave me such a gift today. I will never forget it.

Next weekend -- weather permitting -- many of the women I used to run with will meet me in Colonial Beach, put me in a roadworthy wheelchair, and  push me along as they run. They realize pushing me  in a chair is no easy undertaking -- it's not like I'm a baby in a jogging stroller! We chose Colonial Beach because it is flat. Jannette came up with the idea early in the summer but the blistering heat prevented putting the plan into action. Fall's cooler days are much better for running, especially if you are pushing a large land m-ass in front of you.

I am blessed with good friends.


Walk to Defeat ALS 2010

Many, many thanks to everyone who supported this event. You have no idea how many lives you touch with your generosity.


She's super freaky

Hospice returns tomorrow. Stay tuned for an update.

I spent the day today at NIH at the invitation of my good friend and neurologist Justin Kwan. I haven't been to see him in a professional capacity since early last year and he wanted to do a follow-up. The usual things were tested and measured and I won't bore you with the minutiae, but I have to share one juicy little tidbit: my gastrocs are freakishly strong. Yep, how do you like that? That's exactly what Justin said. Freakishly strong. I love it, don't you?

After the exam was finished (resulting in an FRS of 13), I asked about the possibility of donating my brain and spinal cord to NIH after, well, you know, after. Justin said they would be happy to accept my donation and went over some details.  I don't know if my brain will provide any enlightenment, but if it can be even a little helpful then I am happy.

 A long day, and now time for nighty-night. Sweet dreams!


So lovely

Thank you very much, Susana, for the beautiful orchid. You know how much I love them...

Don't ask Alice

Guess who is going to be the White Rabbit for Halloween?

It's all about me

Look at what I got last week! My very own (loaner) hospital bed! It is all electric--no handcrank needed to raise and lower the actual bed. The mattress is just adequate, but I was told by the nice people from hospice (who came to see me last week) that they  will provide the air mattress overlay which is more comfortable.

As for hospice, they may start coming to the house as early as November. Don't go grabbing handfuls of kleenex, I'm not going anywhere yet. The nurses from my care agency suggested hospice as a supplement to meet all my comfort needs.

Aren't I just the most spoiled little thing?


Better late than never

Today, as Lisa was transferring me from the stair glide to the rollator seat, I paused and leaned against the wall. My back was pressed solidly against it and I asked Lisa to let go of my hands, which she did. Little by little I straightened my posture until I was standing up, nice and tall, unsupported (well, except for the wall). After a short time my back began to protest so I sat down, but what a wonderful few minutes.

When Jenny came by after her run, I had to show her my new parlor trick. She watched as Lisa helped me move to the wall then, as I stood there,  she put her arms around my neck and gave me a hug. And for the first time in many months, I was able to put both my arms around her.  It was a lovely, tender moment, one I will always cherish.

I wonder why I didn't try this before?



My sister, my nephew and I went on a sentimental journey today. Destination: Takoma Park!

My grandfather's house at 7110 Maple Avenue.

Wendy and I marveled at how small the house appeared (the original structure, not the addition on the back), in particular the front steps.

We parked the van and went for a nice walk toward Carroll Avenue. I wanted to see the boundary marker that is only a few steps away from my grandfather's house; it made quite an impression on me when I was a kid.

After loading and locking me in the van, we headed toward our old house at 203 Hodges Lane.

It doesn't look much different than it did 40-some years ago. When my mother bought this house, my grandfather had to cosign the note. The bank would not lend to my mother because she was not married.

Please note the tree trunk on the right.

All the neighborhood kids used to climb that tree, much to the displeasure of Mrs. Judd, who lived in the house next door. We would climb and swing and hang until poor Mrs. Judd came out and screamed at us to get off her tree. 

I think she would be happy that the tree is now completely out of reach.

Then we took a meandering drive through the narrow streets of this charming little city. We found the sledding hill on Birch, the big scary house (I think on Tulip), our babysitter's house where we went after school (there was no daycare), the fire station where we went rollerskating.  When I was a child I thought everything was so spread out. I was wrong.

We stopped at IHOP for lunch. Matt got a Belgian waffle and sausages. This is how he eats his sausages.

He must get that from his father's side.

 Thank you, Wendy and Matt, for a lovely day.


Such a nice day

A lovely young woman visited me today. Meghan is beautiful, intelligent, grounded, successful, and independent. It's been a year or so since we last met, in the deli near our office building. We knew each other through a mutual friend and occasionally ran together in the early morning before work. She contacted me via Facebook and we arranged today's visit.

Imagine my surprise and delight when she arrived with these beautiful tulips in hand! Now I can  go tiptoeing through them!

Our conversation today ran the gamut but one subject deserves a mention: one should always be mindful of the gifts that are offered to us every day, too often overlooked. Meghan, you are a gift. Thank you.

I forgot.

Last night, after everyone -- caregiver, best friend visitor, eldest daughter, youngest daughter's boyfriend -- was gone, I craved a bit of a snack. There were some very healthy Pringle's potato snacks (salt and vinegar flavor, yummy) in the kitchen and I asked Cecilia if she would please get me some. In very short order she brought me a small bowl filled with chips, then blew me a kiss and went to bed.

It never occurred to me to ask her to help me eat my snack. It was a snack, a simple finger food. When her bedroom door clicked, so did my brain -- with the realization that finger foods  are not so simple.

There I sat, in my stupid chair, my laptop desk balanced on each arm, a bowl of complicated foodstuffs positioned to the left of my laptop. The first thing I had to do was move the bowl to a more secure location, namely the space between my rib cage and the center of the desk; this feat was accomplished by tilting the bowl and sliding it across the keyboard and into position. Success!

Now, how to eat the damn food. Lacking a pincer grip forces one to be creative; finger food becomes  hand food. The only way I was able to grasp the idiot potato chips was to slide  the first three fingers of my left hand and scoop a chip (or two or three) up against the knuckle of my curved thumb. Keep in mind that all my digits are shiftless and lazy and do less and less each day to earn their keep. (How do you like that, I began and ended that sentence with the same word. I'm sure that's bad form.) Anyway, just because the chip was scooped did not mean it would stay scooped so I had to make sure delivery to my mouth was properly managed.

With  my hand looking like a lobster claw with a Pringle's potato chip peeking out, I raised my left arm as high as  possible which, these days, is just about chin level. The only way to get that stupid chip in my stupid mouth was to stick out my tongue and hope for contact that lasted until the  chip was extricated. This process was repeated far too many times considering the quality of the food I was eating, and not always successfully. Several times the chip didn't quite make it to the mouth and rappelled off my chin onto my shirt, requiring a completely different but equally tedious process. I bet there aren't many people who get so dirty  eating something so simple.

When I was finished I heaved a sigh of relief.

You may be wondering why I went to such trouble, why I didn't just put the chips to the side.  I considered it but the bowl was too heavy and its position on the laptop desk was inconvenient and intrusive. After I emptied the bowl it was light enough to move and there was nothing in it to spill.

It doesn't happen too often anymore, but it does happen. I forget I have ALS.   And I forget my limitations... until I am challenged by a little plastic bowl and some little potato chips.


A bit of Stella sunshine

By the bi

 The bi-pap machine was returned this past Tuesday.

I'm sure I will hear from a few people about this but I am standing firm. The machine, I'm told, is to provide comfort; I am not uncomfortable  unless I am wearing it. If I change my mind later on, I will already have my handy-dandy facemask and tube.

I don't think I'll change my mind.


Just call me Ruby Goldberg

Well, it seems that Wall-E is inadequate in his  new role; in this case size does matter. His childlike bristles do not meet the needs of my adult sized teeth.

So what to do? All of the grown-up toothbrushes are sleek and smooth. I pondered and pondered (for all of 15 seconds) when it came to me: blue foam tubing. Just as with my car key and my silverware,  blue  foam tubing would solve the problem.

Dear Jenny cut two lengths of tubing and cut along the length of each; she then placed each piece on either side of the Crest toothbrush, securing them top and bottom with elastics.

Once again, I present to you the product of my creative (if warped) imagination:
 Sometimes I amaze myself.

(Looks to me like it's time to buy new bristles.)


She drives so crazy...

It is not wise to let someone who suffers from emotional lability -- in this case, maniacal laughing -- behind the joystick of a power wheelchair.   My poor, dear Adam was almost flattened when I  rolled into him as we went for a post-dinner walk. I was laughing so hard I could not take my fingers from the joystick; the harder I laughed, the faster I went. He actually had to pry my fingers away so that I would stop. I don't remember what was so funny, but I reacted in my typical immoderate fashion.

My new custom power wheelchair better come equipped with a cow-pusher.

In fact, the controls on the loaner chair are just a wee bit too close and my very swollen fingers get stuck all the time. It is to be hoped the new chair will have a different design.


A brief public service announcement

 I want to take a moment and thank those members of my adoring public who have contributed to my Walk to Defeat ALS effort (see the sidebar on the right). With three weeks to go, there is still plenty of time to make a donation toward this campaign, which benefits an association whose purpose is to help people with this stupid disease. Each chapter is completely self supported, so your contributions  make it possible for them to continue to provide vitally important services. If you haven't yet, please do consider making a gift.

Thank you.


10-01-10 Clinic

Let's have a look at my PLM avatar, shall we? 
Remember all those pretty greens and yellows? They are no more. Notice, too, the bi-pap and wheelchair symbols. These are relatively new additions. Because I identified my first symptoms as far back as October 2006, I am now a member of the 4-year club.

Okay, enough of that. I will not give you a blow by blow of today's clinic but I will give you the highlights: my neurologist signed my DNR; I was fitted for my very own power wheelchair; a request is being made of the loan closet for an all electric hospital bed, a rolling shower chair, and an electric Hoyer lift. When the hospital bed is delivered I have decided to move down stairs into the serenity room, necessitating the acquisition of a portable/temporary shower. I will also need to find a gadget that will enhance my cell phone reception; the only way I can talk when I'm downstairs is if I stand next to a window and even that is sketchy.

Bi-pap update: I used it very successfully for about 45 minutes last night, and another 35 or 40 minutes tonight. Still undecided. It does make one look very glamorous, but looking glamorous has never been important to moi.

 As Rula Lenska used to say, "Don't hate me because I'm beautiful."



I saw my pulmonologist on Monday for my quarterly checkup. In the early days  of my disease these visits made me very anxious; I started out with an FVC of 104% and hated each time the number dropped. In June, when it dropped from 70% to 49%, I wasn't anxious anymore.  Rather, I pretty much expected it. When I went to the doctor on Monday I also expected a drop but I have to confess I didn't think it would be such a big one.

My doctor asked me if I had considered a peg (feeding tube). I shook my head because I do not intend to use one at all; I am still chewing and swallowing quite well. She then asked me if I wanted to order a bi-pap. I told her I didn't want one, which led to a discussion about the function of the machine. It is not intended to prolong, it is intended to provide comfort -- making breathing a little easier. I agreed to try one.

The bi-pap technician came to the house on Tuesday and fitted me for a full face mask. The first time I put it on I thought I would suffocate; I was claustrophobic and very distressed. Subsequent attempts were more successful and I managed to wear the mask for several minutes before I signaled it was time to stop.

When Lisa came that night, we tried again as we were doing range of motion exercises. After putting the  mask on me, Lisa positioned me on my bed. I chanced to look in the hallway and saw Cecilia; frantically I signaled to Lisa to shut the door so my daughter would not see. Doors shut, Lisa proceeded to do my exercises while I did my best to adapt to my newest gift from Louise. I tried to relax, to get into a rhythm, but it did not work.

I'll try again but I think I will send the machine back. The only thing I will ever suffer through in spite of discomfort is a beautiful pair of shoes.



I don't know how long I will be able to brush my teeth by myself, but I'm going to hold out for as long as I can.

My current toothbrush is a battery-powered Crest spin-Pro (or something like that); I like it because all the bristles move and the handle is big enough for me to hold. Unfortunately, the casing is very smooth and, as my left hand grip weakens, it is hard to hold.  As of today I will use a new Oral-B toothbrush that has all the attributes of the other brush but has a chunkier handle, to wit:

Jenny informs me the character on my new toothbrush is none other than Wall-E of Pixar fame. I don't know anything about him but if he makes toothbrushing an independent activity I am his biggest fan.

Since we are on the subject, let me describe this independent activity to you. Seated in the bathroom (yes, I multitask), my caregiver places a hand towel on my lap. A dab of toothpaste is applied to the brush; the brush is then placed in my left hand at an angle which allows me to start brushing on the right side. The bristles go in my mouth and my caregiver turns on the toothbrush then exits to give me some privacy. Holding the tooth brush with my left hand and pushing a little with my right, I clean the outside   teeth on the right, back to front. To switch to the other side I hold the toothbrush with my front teeth while I switch hands, then I clean the outside of the left. Keeping my hands  in this position I then move to the lower right side, this time front to back. A quarter turn of the brush (while holding it steady with my teeth)  and I can brush the top right, back to front. Another shift and the top left is attended to, and a final quarter turn brings me to the bottom left. I spend an extra few minutes revisiting the front teeth before I put the toothbrush on the towel in my lap.

I love brushing my teeth.

Weekend update

 How was your weekend? I hope it was restful and enjoyable. Mine was an adventure.

After purchasing the wheelchair-friendly van, Adam, Lynne, Ricardo and I decided to go on a road trip. Our destination: New York City! Award points  would pay for our room at the Hyatt, reservations were made for Top of the Rock, and we would take a ride on the Staten Island ferry. Several days before the trip, however, a situation arose which required an adjustment to the plans. Bethesda was now the hotel destination, and Baltimore the fun day activity location. The Top of the Rock was replaced  by the World Trade Center of Baltimore observation deck, and the Staten Island ferry  was   replaced  by the Spirit of Baltimore lunch cruise (complete with singing waitstaff). My power chair got me around just as well as if  I could walk.

What stands out in my mind, and is a memory I will always cherish, pertains to my friends. Lynne took such incredible care of me; she insisted  on giving me a full shower and did not bat an eye  when helping me in the bathroom. She and Adam took turns feeding me; she, Adam, and Ricardo  all made sure I was able to  drink my various beverages.  On one occasion, Lynne and Adam both had to help me in to and out of the bathroom at Adam's house; one held me up while the other did the pull down, then one held me up while the other managed the paper and the pull up. Adam practically carried me back to my wheelchair. When I was finally situated, we all took a moment to regroup;  I thought to myself how lucky I am to have such incredible friends.

In the last several weeks I've had visits from friends I made from all the different chapters in my life.  I count myself very fortunate indeed.

How very comforting

  I seem to have a stoolmate...


Adventures in mommysitting

 My poor Cecilia. It never fails that, in those few hours each day when she is left alone with me, some new adventure occurs.

As usual, I needed help getting to the bathroom. Cecilia has mastered the art of getting me up from the stupid chair and onto the potty and there were no issues this time around. After I'd finished cleansing, drying, and flushing, I called her to help get me back to the stupid chair. She very ably  lifted me up, pulled up the knickers, took hold of my wrists and we minced our way back toward my stupid chair. As we approached, we noticed the very lovely (but very slippery) zebra pillow had fallen forward and was in a position to wreak havoc. This is where the fun began.

Desiring to move the pillow out of the way, Cecilia attempted to hold me with one hand. I am much higher maintenance than that and I immediately began to teeter. Fortunately I was able to move toward the upholstered bench and there I landed, albeit precariously near the edge. It  was no easy task to  shift the land m-ass but I managed.

I wrote not long ago about taking a tumble in this very same area; my caregiver's attempt  to stand me up failed and I landed on my knees. Frightened that Cecilia lacked the strength to lift me  from this lower position, I quailed at her insistence that she could do it but agreed to try. It did not take long for my legs to prove untrustworthy and down I went, onto the bench.

At this point I was considering my options, but Cecilia insisted again and again that we try,  that she could do this, why didn't I trust her, she wanted to help me, and on and on. Her frustration caused her  to raise her voice; I began to cry, explaining that I didn't trust my legs, that I didn't want to fall, knowing that if I did fall she would feel worse and I was trying to spare her that. I suggested we take a minute to calm down, my suggestion was drowned out  by her begging me not to doubt her. She came toward me because she wanted me to move further back on the bench;  I wriggled and rocked  the land m-ass back as far as I could go; I looked at my daughter's tear stained face and pleading eyes and knew I had to let her try.

Cecilia bent down and, holding me as if in a hug, lifted me and got me to my stupid chair. I won't say we weren't both nervous -- there was a lot at stake -- but she did it. The look on her face,  happy and relieved that she had succeeded, is a look I will never forget. And it was the best hug we've ever shared.

Some very intimate and therapeutic conversation followed. I know -- we all know -- my disease impacts everyone connected to me, and Cecilia is very fragile. Helping me as she did gave her a feeling of strength, both physically and emotionally.


At 17

 I was chock-full of attitude, and pretty stupid judging by this picture.

I want to be alone... with my cigarette

Feets of amazing strength

 Every time I am raised to a standing position my entire body does an involuntary stretch;  my muscles,  lulled into complacency while I sit, ready themselves for action. I stand tall, my head looking up, my back straight, my quads and calves and glutes doing the best they can to be tight (which doesn't mean tight, not like it used to, but it's all relative), my feet up on their toes.

What was that? Yes, I go up on my toes.

My balance is for shit, walking without assistance is a thing of the past, but I can still stand  on my tiptoes -- while being supported, of course. Not only can I stand, I can take a few steps à la ballerina. It is rather a sight to behold.

I think I shall go find a tulip garden.


Worth a Listen

David Rakoff's Half Empty Worldview Is Full Of Wit

I love his perspective and the way he uses language; each syllable is a succulent ingredient in a gourmet banquet of delicious sentences. Enjoy.



The oven blasts at 500°; when the door opens the heat almost suffocates me with its intensity.  My back, leaning against the chair, suffers the most because it is not exposed to the air. I sit, motionless, trying to wait out my internal furnace when I become aware of an itch on my back, near the seam of my sports bra. Cautiously, I move very slightly from side to side, not scratching exactly but moving enough to provide some relief. But. Then. Another itch flares its ugly nostrils; this one -- itchier than the one on my back -- penetrates the outside of my right shoulder, completely unreachable. I think to myself I will surely go mad but for the fact that I know all this will pass. Eventually. The time spent waiting for it to pass, however, creeps by so slowly I don't know how I will make it.

It's five o'clock in the morning. The tiniest of rattles sounds in my chest. My eyes closed, I manage  a feeble cough, but it's not enough. The rattle reappears but this time I cannot cough; I seem to have forgotten how to do it on command. I try -- unsuccessfully -- to clear my throat, worrying all the time that the  horrible, sick, old-person-hacking sounds I make will somehow find their way into Cecilia's dreams, turning them into nightmares. Finally I have a productive moment (eww, gross, this makes my stomach  unhappy) but I can't move the damn blob far enough; my swallow mechanism goes into action and the damn blob goes right back where it came from and we are back at square one.  I continue this way for about an hour and a half and then give up trying to sleep. I elevate my stupid chair (oh yes, I was sleeping in my stupid chair) and notice the rattle is gone. I close my eyes and am near sleep when...

The tickling feeling I've come to hate -- and fear -- starts its evil buzzing in the back of my throat. I cough a couple times, then yawn the yawniest of yawns (so yawny I feel I might dislocate my jaw), then my nose runs and my eyes water. When my eyes water they sting SO BADLY; nothing helps except to have them wiped with a damp cloth. Everyone else is asleep so I clench my eyes and pray for the stinging to go away.

 The next few hours are spent enduring more tickling and coughing and yawning and furnace blasts.

In response to a weekend call, the plumbers arrive after breakfast to look at our well, pump, and tank. Water on, water off, back and forth. I wait as long as I can and finally am granted leave to go (I don't need to tell you where). Naturally I take full advantage of the opportunity but, when I am finished and am ready to push my happy, cleansing buttons, I am told to wait because the plumbers  have turned off the water again. I sit and wait, not long but long enough for my feet to begin swelling. Groan. At long last the water is turned on and I tidy things up and go back to my stupid chair.

So, the well. A new tank was needed (plunk). A new pump was needed (plunk plunk). The well is dry (plunk plunk plunk plunk) so the new pump was removed (-plunk -plunk). Temporary solution: connect to the neighbor's water (they are connected to county water).  Short-term solution: have the well filled by a local company that fills swimming pools (mini-plunk). Long-term solution: connect to the county water (plunk plunk plunk plunk plunk plunk plunk.....).

Not one of my better days. I hate ALS, I hate these stupid hot flashes, and I hate having to spend huge gobs of money I don't have.


A Sunday smile

 Don't you just love the look on the dog's face?

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