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.

X

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.

Math

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.

10/27/10

  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.

PBS

I really do enjoy this comic strip.

Runday

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.

An alternative to the White Rabbit

Little Edie Beale!

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?

Chillin' with Stella

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?

Hometown

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."