THE ODDS (Debbie Does ALS)



Okay. Just making some notes.

First, I did not have as much cramping in the calf muscles last night. Whether it was because I stayed hydrated or because I did extra stretching, I don't know. I don't really care, all that matters is I was not in as much pain.

Second, I am going to buy a bed wedge BECAUSE a) the last several nights I have experienced lightheadedness a few minutes after I lie down, and b) I've had more episodes of the gaspy breathing. The lightheadedness I attribute to the labored breathing that occurs when I'm getting into bed -- it's almost as if I'm hyperventilating. The gaspy breathing occurs sporadically and wakes me up. It scares me. Elevating my upper body should fix both problems.

Third, every now and then I find that I forget that certain functions used to be easy. It's been such a long time since I was able to pick up a pen and sign my name, or put toothpaste on my toothbrush, or put on my shoes; it is as if the way I do things now is the way it's always been.

Fourth, I have to make a conscious effort to sit up straight and not lean to the right. This leaning phenomenon happens gradually until I realize I am close to falling out of my chair. Since my right arm and my right leg are my weakest limbs it stands to reason that the muscles on the right side of my trunk are similarly weak.

There is no number five. I am finished, for now. Enjoy your Friday and your weekend.


A little bit of whining

Never, even after all the marathons I've run, have my calves hurt like they hurt today. The cramping I experienced last night was unprecedented and woke me up three or four times. When I got out of bed this morning I had to sit for several minutes and stretch before I could put any weight on my legs.

I wonder what prompted this? Perhaps I am under-hydrated. I will drink like a mad fool today and hope for the best... even though you'll probably be reading a follow-up post about my adventures in the bathroom. Yep, I am a laugh riot.


T - 17

I met one of my female coworkers on my way to the restroom today. She was going there, too. I took my very specially designed key and unlocked the door, used my right shoulder and arm to push the door open when all of a sudden the door pushed further than I had expected and I started to lose my balance. My coworker, trying to help, had pushed the door from behind me not knowing that even this small bit of assistance could land me on the floor. Fortunately I was able to catch myself, but not before I exclaimed, "Don't do that!" Poor girl, she apologized over and over -- she had no way of knowing and I do not fault her at all. Next time, however, I will follow, not lead.

It's official. Last day will be May 15. Coincidentally, my first day with the company was May 14, 2007. This is a milestone I thought would occur much later, but here it is. I guess my old boss was right -- I'm a quitter. You know I'm sitting here laughing, right? Anyway, I plan to leave quietly without any fuss; I do not relish saying goodbye to my coworkers. I would only cry and make everyone uncomfortable and nobody wants THAT. I'll write them a nice letter instead.

I gave Mike the three-week warning today when I went to PT. He noticed that I canceled several appointments so sort of guessed why. He would not let me talk about it, but conversation always came back to the date, the logistics, etc. It is not practical to drive up from Fredericksburg to Arlington and I am really going to miss him. He is one incredible physical therapist...and then some.

There is much I want to say about the relationships which are going to be a casualty of my "condition," but I'm pretty tired so it will have to wait. For now, let me say some of them won't be too painful but others are going to hurt like hell.




I answered a call at work today. The caller was from an international entity (I think Russian) and was inquiring as to the proper address to which to send an invitation. My office address is actually quite simple but the street name -- Glebe -- is uncommon and ordinarily I have to spell it out.

You recall, I'm sure, that I have a bit of difficulty with the letter "B" -- more often than not it sounds like the letter "V." When my caller repeated the address back to me, he said "Gleve." I corrected him, but when I did so it sounded like "Gleve." I don't know why, but it was important to me that the name be spelled correctly and I continued to stress the letter "B" even though my pronunciation of it was clearly confusing. He finally got it right (or maybe I did), thanked me and rang off.

Why did I care so much that it be spelled correctly? Why did I continue, given the fact that the more I persisted the more tired my mouth became and the more difficult I was to understand? It's not even that big a deal -- we receive plenty of mail where the street name is misspelled. Clearly I am out of my mind. Or maybe I am trying to exert control over even the most unimportant things since I have very little control over some larger issues. Yes, that must be it. I am satisfied with that analysis.

Time for ved.



I bought a new shower head, one that can be adjusted for height or can be hand held. I am still able to shower by myself but in recent days must acknowledge that I feel vulnerable and somewhat timid anytime I stand, and I do stand more than I should.

When I was in Paris with Jenny and Lynne, I had a couple of close calls. After the feeling of panic passed I was overcome by a fit of laughter -- making my precarious position in the shower even more precarious -- as I imagined how difficult, even impossible, it would be for those two skinny girls to help me if I were to fall. I imagined the two of them trying to hoist (maybe wrestle is a better word) a slippery, wet whale out of the tub, a whale with useless arms and legs (I know, just ignore it). The visual made me laugh but the possibility of it actually happening brought me back to my senses. Jenny was not amused.

A few days ago my foot slipped during my shower -- not much, but enough to put me on my guard. Until now I have not had safety rails, that is being corrected immediately. As well, I am considering taking another step and asking Rose to help me when she is here. Hence the new shower head; I can sit in my (already walk-in) shower and let her have the management of the rest of it. This is a big step to take but I cannot afford to be brave or defiant. My safety is paramount and, even though I have been accused of having a twisted sense of humor, I do not want to be a twisted m-ass of arms and legs in the shower.

I told Becky yesterday that, while any sort of fall is to be avoided, it is preferable to fall fully clothed. One must think of one's rescuers and one's dignity, yes?

My daughters

Becky and Jenny were over yesterday. I have to say my girls are such delights -- they are sweet, caring, loving, beautiful, incredible women and I am very proud of both of them. They organized my newly spacious room, organized the refrigerator and inventoried the freezer, and helped me wade through the morass of papers that is growing as I submit claims to my insurance companies. Since Becky rarely has the pleasure of assisting with my daily ablutions, she was my helper in that regard. Both girls took me shopping for a couple of necessities (hairspray, new shower head, new area rug, plunk plunk). It was a very productive day and, more importantly, another happy day spent with the kids. I love them so much.

My room

Remember last Sunday I went out to buy a new bed? It was delivered Tuesday. Cecilia got a new bed, too, since she has slept on futons for the last several years. Plunk, plunk, plunk... I do know how to spend money.

Neither of the beds are anything fancy; they are full sized, no-nonsense mattresses with sensible, sturdy frames. I also purchased a headboard for my bed -- again, nothing fancy. Cecilia's box spring is a regular height while mine is low-profile. Actually, as of yesterday, my box spring is the regular height and Cecilia's is low-profile... I hated being so low to the ground so we switched. While it is higher than the lower profile bed, it is close enough to the ground that it is easier for me to get into.

My wonderful, firm-with-a-pillow top-queen-size bed has been moved to the extra bedroom along with John's bureau and side table. This has opened up my bedroom enormously. My house is about 45 years old and the master bedroom is small by today's standards. The smaller bed and the removal of two large pieces of furniture make the room seem almost palatial. It is now much easier -- and safer -- for me to move around in, everybody is happy.

There is also a new, serene quality to this room. Not only are the linens and curtains and headboard all a cool shade of silvery lavender, the bird is gone. Not gone in a final sense, gone to a different part of the house where I don't hear him quite so much. Do not misunderstand -- I love Flapper and love his morning song, his toothbrush song, his shower song, and his "pretty bird" song. What I do not love is the earsplitting shriek he emits when he sees Cecilia. When he sees her, he screams and screams and screams until she comes and says hello. It can be quite nerve-racking. Did you know I had a cockatiel in my room? I'm full of surprises, aren't I? Anyway, the dear bird has relocated and I now have a second serenity room.


A little less red tape

The interview/assessment went rather well, I think. Suzanne, the nurse, was here for just about two hours during which time we filled out about 20-25 pages of information. She even had to do an assessment of my mental capacity which, since I am such a mental giant, I passed with flying colors. The questions were tough: who is our current president? In what county do I live? What is 100 - 7? 93 - 7? 86 - 7? When we reached 65 Suzanne said I could stop -- her usual patients don't normally get that far (but her usual patients are typically in their dotage).

I had to answer questions about those ADLs I mentioned earlier and I believe she was satisfied with my responses. She considers me a high fall risk, to the point she does not feel it is safe for me to be home by myself. When she left she said she was going to recommend five day a week, 12 hour a day assistance. Clearly that is not going to happen at that level at this time, but it is indicative of the care she believes I require.

Now all we have to do is get the medical records into the hands of both long-term care companies. On my to do list is a phone call to the ALS clinic at GW to see if they've made any progress in responding to the records requests.

One thing I know my doctors have done is complete a form I need to request my accelerated death benefit from the life insurance provided by my employer. In order to be eligible for this benefit my doctor must state that I will die within 12 months from my terminal illness. In general, I can talk about this very casually -- after all, I am very practical and don't much think about my expiration date. As well, this form is just a formality and I don't really have to die in a year. That said, seeing it on a piece of paper affects me just a little bit... it's not the spoken word the floats up into the air and disappears behind uncomfortable giggles, it is an 8.5 x 11 sheet of paper filled in by hand by my neurologist that is sitting on my dining room table waiting to be faxed to the insurance company. It's all a tad morbid.

So. Check a couple more things off the list. Now it is time for bed. Methinks I will count sheep and will subtract by sevens.

Judgment Day

Today is evaluation day. One of my long-term care insurance companies is sending a nurse to visit me at home to determine if I am truly in need of home care at this time. My ability to perform the basic Activities of Daily Living (ADL), which are bathing, dressing, transferring, using the toilet, continence, and eating, will be scrutinized. On one hand I feel it is obvious that I need the assistance; on the other I worry that the rigorous standards set by insurance companies may find I'm still too independent. We shall see.



When I go to the restroom at work I struggle with the "pull down" and "pull up," so much so that I can't help but emit quiet grunts and labored breathing. I wonder what people must think I am doing.

Holding a sandwich has become more awkward of late, I often have to lean into my food rather than bring it up to my mouth. Today, about an hour after eating a very delicious chicken sandwich, I had occasion to pass by a mirror. I was more than a little disturbed to see a not-so-small piece of the sandwich stuck to the bottom rim of my glasses. I wonder why no one told me.

There are eight elevators at my physical therapist's office building, four on each side. The button is centrally located between the second and third elevator doors. Almost without fail the elevator that comes in response to my push is the one furthest away. I hear the bell and walk over to it just in time for the doors to close in my face. I go back to the button and press again. The same elevator door opens -- and closes. I eventually make it to an elevator before the door closes, but not before I smile at the little comedy being enacted in the hallway.

See you at the start line...

Entry Form
Course Map



Do not, I repeat do not use this company if you want to have work done on your home. They left me with an unfinished job and they owe me over $6000. I have it on good authority much of the money he makes he spends at poker tournaments... I wonder if he cheats there, too.


Well, I made it to work. Traffic was terrible but not insurmountable. Fifth gear cooperated, as did reverse.

So far, so good.

An observation: Art Andrews' traffic report on WAMU is pretty much worthless. I hope he has another role at the station because this report doesn't do anybody much good.


Not the sort of chapeau one prefers...

I have no right to complain. I may have fallen and hit my head something fierce, but a least I hobbled away intact (at least on the exterior).

Becky's boyfriend -- John Wallace of speedy running fame -- was attacked by a large piece of wood (I think it was the backyard swing?) and had to get stitches and this lovely bandage. I don't remember the entire story, but Becky (who has permission to write on this blog) can fill in the blanks if she chooses. Poor John!

I hope that Becky is taking good care of him.

I'll get by with a little help from my friend

The second day is always the worst. I'm unbelievably sore and stiff today, predominantly my neck. My land m-ass is none too happy, either. I think I was wise to stay home.

The nurse who does the assessments for one of my long-term care companies just called and has scheduled an appointment for Thursday morning. It was her only availability so I had to take it, but it means a very short week at work. I know it will be fine but I can't help but feel awkward about working from home so many days in one week.

I don't know whether it's the aches and pains or the work schedule or the nurse's visit (or maybe a combination of all three) but I'm feeling quite out of sorts, as though Louise is right up in my face mocking me. Thank goodness I have this little visitor to help me get through the day...


Today I remained upright

All things considered, not a bad day today. I've been tentative in every activity -- walking, in particular -- and have accepted help from everyone. It's funny... I feel fine but I lack confidence.

No one is permitted to make me laugh when I'm standing or walking. It's hard to avoid joking since that is our usual standard operating procedure but all I have to do is start to tip and the joking stops. Nobody wants to be responsible for my next fall.

One thing that has been increasingly difficult -- and last night was near to impossible -- is climbing into my bed. It is quite high off the ground. The decision was made today to buy a lower profile bed so off we went to the mattress store. John got the wheelchair out of the trunk, I plopped in and we went toward the ramp, only to discover it had been blocked by a big balloon mattress used for advertising. Needless to say I told the mattress store employees they should reevaluate where they place such things. I was going to offer a suggestion but thought better of it... after all, these people were going to sell me a mattress.

I decided to give myself one more day at home before tackling driving and the office. Despite the fact that I feel fine, I AM a little shaky and I am trying to be cautious; it has been pointed out to me I did suffer a bit of a trauma yesterday. Fortunately dear Mel is very supportive -- I'm very lucky to work where I do with all that is going on.

I took a poll today and everybody I asked was in unanimous agreement: we all hate Louise.

The bigger they are...

Another day, another incident...

Saturday, I was getting ready to meet Melinda at a local winery; we were going to have lunch and sample a few glasses of wine. Poor John was called upon to help with cleaning and deodorant and dressing; he managed all very creditably and we both laughed at the absurdity of this entire situation. I started to laugh a little too hard and began to step backward, thinking I had a wall behind me. No, there was no wall, there was a doorway and as I passed through it -- backwards --- and realized I was falling, hilarity turned to panic. I knew what was happening and had no control, no ability to stop it.

The land m-ass hit the hardwood floor first and a split second later the back of my head hit the floor with a loud crack -- I was certain my head had split open. (That it did not still amazes me. Our bodies have an amazing capacity to weather punishment.) John came running and made me rest there for a moment before trying to get me back into a standing position. The knot on the back of my head was already forming but fortunately there was no broken skin. When I was ready to attempt standing, John first got me into a sitting position and then lifted me -- very capably, I must admit -- to my feet. I slowly walked over to the living room chair and sank into it.

Ice was applied to the growing bump on the back of my head and I considered what I was going to do -- I still wanted to meet Melinda but felt too shaky to drive. I called her and asked her if she could drive me home if John drove me to her but she, ever the wise and concerned friend, suggested we postpone. I was disappointed but had to concede that it was better idea.

I slept a bit after that and woke up to a considerably smaller lump. A visit to Kenny's was scheduled for the afternoon and I made it, thanks to John's taxi service. I was conscious of feeling very frail and feeble -- I still feel that way.

Hopefully I will feel more the thing tomorrow. Right now everything hurts.


Update: after a good night's rest I feel fine. Still a bit shaky and stiff but that is to be expected. The new rule around here is I am not allowed to laugh or cry or do anything unless I am sitting down, per Jenny.


I am a Terrapin. Really, I am.

I just had an absurdly unpleasant incident. Becky called while I was downstairs in the serenity room and, since the reception downstairs is poor, I went out to the backyard. I was going to sit on the little brick retaining wall next to the back door... but the land m-ass miscalculated and I fell backwards into the dirt. My left side was resting on an old stump (actually, it turns out it was a large rock), my head and the right side of my neck were resting on an uneven brick, my right leg was hanging over the wall, my left foot was resting on the wall. I dropped my phone when I fell but my Bluetooth was still in place; I had to hold it with my left hand or it would've fallen, too, and then I would have been up a creek. I could not for the life of me put myself upright! I felt like a turtle. It was terribly uncomfortable -- no matter what I did I was unable to move my back or neck into a better position. Of the two, my back was in less pain. The way my head and neck were positioned on the brick was awful and every time I tried to move only made it worse.

Becky called her dad who was on his way home from picking up Cecilia from school. While I was waiting the absurdity of my predicament made me laugh and cry at the same time. Even though I knew none of my neighbors were around, I called out for help. Because I was laughing it didn't sound like "help," it was more like "hellnfh." The man at the park in Richmond who told me to have a great day would have been doubly sure of his initial impression of me. Becky called me back and stayed on the phone with me until John returned with Cecilia. I didn't have to wait long -- only 15 minutes -- and then I was rescued.

I may end up with a pretty bad bruise on my neck and may have one on my back as well.


Another step taken

I have to admit I had conflicting emotions last night. Rose came on board, which made me both happy and sad.

Sad may be an overstatement. Having gotten to the point where I actually need outside help, acknowledging it and acting on it doesn't make me sad -- I guess I'm more resigned.

But having my meal prepared, having my hair washed (with a bonus scalp massage) and dried, having each toe and finger dried after my shower, having lotion applied, receiving 100% assistance with my clothes, this made me happy. Even relieved. Definitely grateful.

Rose is strong and capable and kind. And she's not only helping me, she's helping everyone else who is helping me, Jenny most of all. I am actually eager to get to the point where I can engage her twice weekly... once again I say thank heaven for long-term care insurance.

In other news: first post-spring break meltdown tonight. After two days of seeming normalcy, I didn't see this one coming. My stomach is still tied up in knots. I wish Rose could fix this.


A room with a view...

I received this today. Made me smile.



Dinner in Paris

When Cecilia and I went to Paris in 2005 we stayed in a little hotel on rue de l'Exposition, near the Eiffel Tower. Across the street was a cute little restaurant, L'Auberge du Champ de Mars. On our last night we dined there and it was one of the best meals I've ever had. I had a Kir Royal to start, foie gras and toast came next, followed by glazed duck with a potato pancake, as well as a lovely bottle of red wine. Crème brûlée was my choice of dessert after which I had a cup of nice, strong coffee.

I returned in January 2007 when Becky, Susan, Rachel and I visited Paris, and again in June 2008 when the girls and I did our crazy three country tour. Each time I got the same thing. The restaurant never changed, nor did my menu choices.

This trip, more than likely my last, I went to this little restaurant again. Jenny, Lynne, and I met some friends from Virginia (and one new friend from Denmark!). Yes, I ordered the same meal. If it ain't broke don't fix it.

I savored every sip of wine and every bite of my food. While eating the foie gras I told everyone assembled that each bite I took reminded me of all the good things, all the good memories I had of my visits to my favorite city in the world. David, our new friend, said it was very Proustian, and recalled the episode with the Madeleine cookie.

When dinner was over David acted as my translator and thanked the proprietress and conveyed to her that this restaurant was my favorite. It turns out she and her husband, the chef, may be embarking on a new enterprise after 25 years; it seems there is more demand for Chinese and Italian restaurants. How unfortunate, but how glad I am I had one last meal at this little gem.

Bon appétit.

Bucket list item realized

Last night I went to my last Wizards game of the season. I had four tickets to the game as well as to happy hour (one of the perks of buying tickets from a season-ticket holder). Wendy, Mel, Lynne and I had a quick drink at Rosa Mexicano before going over to the Verizon Center for the pregame buffet. When we got there, however, they had moved the venue to the basement and we had to be escorted there. By the time we got downstairs it was getting close to seven, the hour at which they close happy hour. We managed to get something to eat but, because I am who I am, I had to grumble and poor Laura (the nearest Verizon Center representative) got a little bit of an earful.

After we ate and before going to our seats I took a chance. Poor Laura was still nearby so I beckoned to her to come over. I was in my transport chair looking very pathetic and I explained that I might not have another opportunity to come to a Wizards game, that I had Lou Gehrig's disease and one of my bucket list items was to watch a game from seats on the floor. It took forever, and she only got two tickets, but Laura came through. Wendy and Mel went to the regular seats in section 113 (which are great seats) while Lynne and I were escorted to seats directly behind the cameramen by one of the baskets. I was in heaven! I couldn't believe I was actually on the floor, so close to my beloved Wizards.

They didn't play badly but unfortunately they lost. No matter, I got to see them while they were playing well from a vantage point I never thought to enjoy.

I can check that one off the list.

(Wendy and Mel: thank you for being such good sports. I hope that you enjoyed your seats as much as I did mine.)

Incontinence. Warning -- full disclosure.

Yeah. In-con-ti-nence. Again. One hell of a topic.

Let me preface this post by reporting that I had a very productive conversation with one of the representatives from my long-term care insurance. She called to do the initial interview to determine how many of my activities of daily living (ADL) are impacted by Louise. During the course of the conversation I learned I may be eligible for a waiver of the elimination period because of the nature of my illness which would be FANTASTIC because that would allow me to hit the ground running (I need to find more appropriate clichés). Additionally, they do not restrict me to an agency as long as my private aide is licensed and/or certified (note to self: check with Rose about this). Another happy discovery is that, when I am deemed eligible to receive benefits, my premiums are suspended. All good news.

So, back to incontinence. One of the questions asked of me was if I was able to maintain continence. The honest answer is no. Forgive me if this is something I've mentioned before but when the urge hits I don't get much warning, and the walk to the restroom is fraught with peril, as is the excruciating time it takes to do the pull-down. Long story short, there is a lot of laundry.

This morning was the worst I've experienced to date. I had a great night's sleep and woke up near 7 AM. Since I am back in my own bed I am able to turn and stretch and prepare myself to get up. I had turned onto my right side and was luxuriating in my beautiful sheets when it hit. Oh my God, how it hit. I called out to John to help me get up but, when I was finally in a sitting position, I couldn't move. I employed every trick I knew to try to distract myself to give me some time to make it to the bathroom. You know the feeling, everyone knows the feeling. Finally, the coast seemed clear and I got up and walked toward the bathroom -- about 20 steps away. With 15 steps to go it hit again. I had nowhere to go -- I couldn't sit and I couldn't stop. I baby-stepped along and almost made it. Almost, but not quite. With my thumbs hooked into the waistband of my pants the dam burst. I tried and tried to control it, to no avail. I stood there horrified as my bathmat bore the brunt of my bladder's breakdown.

Oh, Stadium Gal, where were you when I needed you most?

I peeled off my pants and dropped them, along with the mat, into the laundry. I turned on the shower and stepped in (still wearing a T-shirt) and washed off, disgusted.

I was under the impression this was one of the areas left unaffected. Clearly the ability to pee and poop are unaffected but your ability to control when you go must be what is compromised. What I need to do is make sure I adhere to a potty schedule, going even though I don't feel the need.

I warned you.

Reaching beyond your grasp

You've heard that before, haven't you? I have always liked that phrase and have tried to live up to it. These days, however, it has taken on new meaning.

One of the unfortunate consequences of having ALS is that you cannot continue to reach beyond your grasp; eventually your reach is limited to a very narrow field. For that matter your grasp goes to hell, too.

This disintegration in the reach/grasp ability affects so many facets of daily living: eating, dressing, showering... and going to the BATHROOM. The time has come for me to prepare for the inevitability that, in the not-too-distant future, I will need assistance. I can't have a procedure (as I did in November 2008) to rid myself of the problem; one must pee after all.

Would that I were David Sedaris -- I would give the old Stadium Pal a try.

Repeated attempts at searching for the Stadium Gal were unsuccessful which leads me to believe there isn't one. Not that it would do me much good anyway. No, it is time to plunk down some moolah on a bidet toilet seat. I was researching them this morning -- it's amazing how many there are to choose from. $25 will get you a four way cap, rubber tubing and a lever to control the force of the stream. I think in this case you get what you pay for and I am prepared to move away from the $25 range. I'm not sure but I think my flexible spending dollars might cover this. I'll have to check. Anyway, I'm looking at the models that offer TWO wands for more thorough cleansing. I would also like a heated seat, water temperature control, a dryer, and a wall mount remote control because all the built-in remote controls are on the right side and that does me no good. I find myself intrigued by the models that offer "pulsating" and "massaging" options. Can you imagine? One might never leave the toilet.



Wednesday night dream:

I lived in a hovel with a tall man with dark, stringy hair. Relationship totally platonic but we shared a bed. He was very artsy. His mother looked like Ursula from the Little Mermaid but she was kind and very upset that I was ill. She apologized for crying to me but I told her that my role in our relationship was consoler. She said she made jokes with her son who then appeared, held me close (I was conscious of his stringy hair and his smoky breath) and whispered that he loved me.

Next I was in Jeff Fay's (an old friend) apartment. He was showing a very bizarre German movie on his wall. I walked past but my eyes were riveted to the scene. From there I found myself in a lot where many cars were parked, in particular four 40s vintage Fords. A filmmaker was explaining that he had filmed these four cars over a period of time, watching the sun rise and set and how the light played on the vehicles. I leaned across the hood of a yellow car, embracing the smooth exterior and feeling the heat caused by the sun. Very comforting.

Then I was in a car being driven by Cecilia. We were in France. As we came to a stop Cecilia tapped the car in front of her. The driver began to holler and I, no longer ill, hopped out and began to yell at the man. I had a British accent and kept telling him I would sue. He then proceeded to back up into our car and he pushed it up the hill. Cecilia was still behind the wheel. I continued to yell but then he smiled and gave me his card -- he was a used car salesman.

Finally, I was in a store that sold curtains. I was with Marc and Michelle and I was smoking. I blew the smoke up toward the ceiling and then announced I would go outside to get rid of the nasty cigarette. When I came back I saw a no smoking sign on the door.


Interestingly, Jenny, Lynne AND Cecilia had bizarre dreams/nightmares on Wednesday night, too. I used to have pre-race anxiety dreams...maybe we all had pre-travel anxiety.



Did you like the video? It does a fair job of representing what we saw yesterday, but the narrative we heard was far more comprehensive. Just as with so many things I encounter when traveling in Europe, the ancientness (is that a word?) astounds me and humbles me. The tapestry is in such exceptional condition after almost 1000 years, it's unbelievable.

Bayeux is a lovely little town. After we visited the cathedral and the tapestry, we wandered about the winding streets and paths, some along little canals. Truly charming.

Our train rides to and from were unexceptional and very comfortable. On the return train I had a bit of a mishap: I had to climb up three steps from the platform into the car, go through a sliding door to the right and then make my way to our seats. The sliding door was closing and caught me off guard; the train was listing a bit to the left so I was unsteady and, when I put my left hand onto a seat back to keep my balance, my hand slipped and I fell onto the seat back. My cheek hit the top, my shoulder hit the hard shell of the seat. I don't remember how I regained my balance -- Jenny tells me she was there on the spot. Naturally our seats were at the other end of the car so we had a little bit of distance to cover and I was very grateful when I plopped down into my seat.

We had dinner at a brasserie near the hotel, clearly a favorite with locals and a good place to gather to watch soccer. It was a good way to end the day.

Today has been very restful. After I woke up and had breakfast, I took a nap. Totally decadent. I might just take another one later.


Bon jour

Hello from Paris. The sun is out and it promises to be a very lovely day.

The flight on Air France was less than comfortable. The seats were ample but poorly aligned and none of us enjoyed much sleep. Thanks to the wheelchair, we zipped through immigration but the time we saved there we lost while waiting for the shuttle. We finally got to the hotel about 2:30 PM; I started my nap at 3:30 PM and got up at 6:30 PM. We had dinner at La Coupole and got back to the hotel by 11 PM. I was in bed at 11:30 PM.

My sleep was fitful; I dreamt of not being able to breathe and several times woke up gasping. Not significantly, but not typical for me. I suspect it is my pillow, which also gave me a headache. It's much fluffier than the one I use at home. As well, I sleep on incredibly slippery sheets at home which allow me to turn easily. Not so here. It's very frustrating. I am out of my comfortable element, the environment into which I adapted, but at least I am in Paris. I hope to see Michelle today, and afterward take a nice wheelchair ride up to the Seine. Beyond that, not much. I think the less done the better.

Tomorrow: Bayeux.


Quick clinic recap

I've gained weight, 1.6 pounds to be precise. Everyone is happy. Almost everyone.
My first FVC test came in somewhere in the 60s. I did not have my glasses on so I could not see the screen. I got a do over and came in at 72%, only 1% different from three months ago.
My blood pressure in pulmonology was 146/87. In neurology it was 126/83. I just laugh at these numbers.
Unable to find a decent vein and because my labs have been consistent for some time, we did not have to draw any blood today. There was an attempt, however, and I'm wearing a Band-Aid to prove it.
The speech therapist was able to detect a difference in the way I speak and recommended I do voice banking. It's been on the list for some time, I've just procrastinated.
I did a runway walk so my OT and PT could see how graceful I am on two legs. I do believe I wowed them.
The psychiatrist determined that I was not depressed and agreed with my course of action concerning Cecilia.
My neurologist is going to prepare a letter that I'll need to request an accelerated death benefit from my employer's life-insurance policy. It's very morbid in that she must state that I am not expected to live longer than 12 months. No, I don't have to die, she just has to say that I will. It's all very gruesome.

Speaking of gruesome, that would describe the traffic we sat in on our way back from the clinic. It was a two hour trip door to door -- dreadful.

My evening has been spent preparing for tomorrow's departure. I am approaching this trip with a little bit of excitement, but it's bittersweet. The woman visiting Paris this time is so different. But that other woman, the one who visited before, sure did enjoy herself and has volumes of memories of running, biking, and walking in this beautiful city. I've said it before -- I'm very lucky.

Oh! I can't sign off until I tell you about my darling Adam. Prior to clinic we met for coffee at Starbucks. Lynne rolled me over in the chair and Adam remarked that I always had to make a grand entrance. Lynne had to take a call from work so Adam and I drank our protein shakes and had a cozy tête-à-tête. He offered to push me back to the clinic and, as we were crossing K Street, commented that I was heavy and suggested it was all the beer and bacon I've consumed in my life. I was laughing so hard I almost fell out of the stupid chair.

That about does it. I am off to drink wine through a straw.

À bientôt.

It's April

Check out my little stick figure at the bottom of the page. My legs are orange. It being 1 April, I updated my FRS... I turned 30, down from last month's score of 34. Quite a drop.

Contributing to the lower score: stair climbing, using a wheelchair (even part-time), and my speech. An interesting note on that last. My dear friend Kenny called me today and did not recognize my voice. He said I sounded hoarse and that my speech was altered. Because I do not speak with Kenny every day he would not be aware of the gradual change which has clearly taken place. What is interesting to note is that I am not freaked out by the lower number or by Kenny's observation; rather, I feel detached and unsurprised. Have I moved to a new level of acceptance?

So, Rose was supposed to come over tonight and assist me. I was actually looking very forward to the evening but, just before I left work, I had a message from daughter number three who was still looking for a dress to take to California. I had tasked her with finding one so she would have something nice to wear to church. Because scheduling over the next few days is very tight, I had to take her to the store tonight which meant I had to cancel Rose. Fortunately Cecilia was able to help me with what I needed to do this evening.

We took the wheelchair with us, a first for Cecilia. She loaded it into the back seat of the Honda and away we went. As everyone knows it takes a good deal of strength to push a manual wheelchair, particularly one that is loaded with a certain land m-ass, and my dear daughter had her work cut out for her. She succeeded in rolling me out of the parking lot and into the mall, however, no doubt motivated by her objective.

Happily our visit was short and Cecilia found what she wanted fairly quickly. While I was waiting (out in the main corridor because I detest this particular store's "ambience") I amused myself by watching the people who passed by. The old saying "birds of a feather flock together" must have been coined after a visit to a local shopping center. The rednecks in their ballcaps, the old women with frizzy perms, the teenage girls with rounded shoulders and flip flops -- quite a number of species were represented.

Cecilia at last emerged carrying a bag and we made our way back to the car. I'm certain everyone who saw Cecilia wheel me out felt very safe when they saw me get into the driver's seat! The rest of the evening was uneventful. My dear daughter, still riding the wave of a new purchase, prepared my dinner, helped with laundry, and helped me before and after my shower. She was not Rose but she smelled as sweet. (I know, I couldn't help myself.)

Next up: clinic.

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