THE ODDS (Debbie Does ALS)


Memorial Day 2010

The alarm went off at 5 AM and John got me out of bed. I performed my morning ablutions, put on some makeup, leaned my left elbow on my dresser then ran the fingers of my left hand through my hair, and made my way down the hall and into the dining room where I sat at my computer and waited for Lynne. That most worthy gentlewoman arrived at 6 AM as planned whereupon she loaded the wheelchair and the wheelchair's user into her vehicle and off we went to the Memorial Day 10K race in downtown Fredericksburg.

I have not been to a race in a very long time, primarily because I could not (would not) get my lazy butt out of bed AND because of the weather/temperature. These days I am so well rested and the temperature is so ALS-friendly that, when Lynne said she was running the race, I asked if she would bring me along. As you can tell from the first paragraph, she did.

Comfortably situated in the wheelchair, we rolled over to the public library where Lynne registered for the race. While she was inside I waited in the courtyard and watched all the runners as they went to and fro; I'd be lying if I said I didn't feel pangs of envy and anger but they passed --eventually. Registered, Lynne came out and said she had to go to her car to get her shoes. Pushing me along would have slowed her down so I stayed put while she ran off. At this point a few women came over to talk -- I didn't know any of them very well so the conversation was short. I was grateful when yet another woman walked up, one I do know well and with whom I ran quite a lot before Lynne and I became marathon and running partners. She and I struck up a conversation about an upcoming get-together, I told her all about Becky's engagement, I thanked her for the stair glide she'd given me, etc. etc. By this time Lynne had returned but, true to form, she had to make a Porta John stop. Jannette offered to push me to the finish while Lynne waited in line. Once settled, Jannette hurried off to the start. Lynne left her keys and her water bottle with me and off she went as well.

The race started and, while I was waiting, I encountered several other people I knew and had nice chats with all of them. More than once people commented on how hot the temperature was and how dreadful it must be to be racing -- the pangs of envy I felt earlier were nowhere to be found! I never was a hot weather runner and I was actually glad of my stupid wheelchair for giving me an excuse not to have to run. Wait, that's too extreme. I am never glad of my stupid wheelchair. ANYWAY, it was hot and I was glad I was not running.

Lynne finished, declaring loudly that it was hot and she needed to lose 5 pounds (she doesn't). Still amazingly strong after having pushed through miserable temperatures, she rolled me over to the library parking lot where there were a beer truck and after race snacks. Even though I did not race I still partook of a post-race beverage and a bagel -- after all, I had not yet had my breakfast and what better breakfast is there? As I did not think to bring a straw, drinking the beer was a little sketchy but I managed to acquit myself well. Not long after, Jannette made her way over knowing that we would be found at the beer truck. I do have a reputation, don't I?

Jannette told me that, as she ran, she was thinking of a way I might be able to experience running and racing one more time. She asked how I would feel if a group ran together and took turns pushing me in my chair. I answer that I would love to do something like that but my chair was not very road friendly. Undeterred, Jannette stated she would look for a roadworthy wheelchair and would put together a group. I have to tell you -- if my friends were to pull off something like this, allowing me to be part of a race with the women who taught me how to love the sport, I would be deliriously happy. I don't know if it will ever come together, but just knowing my friends would want to do that is enough.

Maybe I need to lose 5 pounds before this happens. One does not want one's friends to regret an act of kindness...

Lynne brought me home and got me settled with my morning meds and coffee before she took off, promising to see me Wednesday (her "share the care" day). Not for the first time I thought to myself how very, very lucky I am to have her as a friend.

I hope everyone had as lovely a Memorial Day weekend as did I. Let's see what June brings.


There is going to be a wedding

Not quite two weeks ago I was sitting in the serenity room working while on the phone with Mel. From the window I saw Harley, Becky and John's Norwegian elkhound, followed by John Wallace. I rang off with Mel and waited to see Becky, but she was not in attendance. I thought it was quite curious and, when John, John Wallace and Harley came downstairs, I exclaimed at the nice surprise. I asked John W. if he just happened to be in Fredericksburg and he told me no. He sat down and the three of us engaged in some small talk for a few minutes and then my daughter's boyfriend said that he, while not always very traditional, wanted to be traditional at this time and asked us for permission to marry our daughter. My mouth is not big enough to support the smile that was trying to break around my face. John is a good man and he loves my daughter. And my daughter loves him. Naturally he received permission.

They went to New England on vacation the Saturday before last and came back today, stopping at our house around 2 PM. From my room I could see Becky walking toward the house with her left hand hidden behind her back. Jenny was helping me post-shower and made me sit down so I wouldn't fall. When Becky came into my room she, Jenny, and I were typical silly girls, laughing and crying and oohing and aahing over her perfectly exquisite diamond ring. Becky did not know that John came to see us before their vacation and was misty eyed when she heard the story.

Becky does not wear jewelry. Never has. Does not even have pierced ears. She seems a different person with this ring on her finger -- it's as though her hand grew up and the rest of her along with it.

One of the items on my bucket list was to gather my sister and niece, Lynne and her daughter, all three of my daughters, several bottles of champagne, some caviar and other treats, and head to a bridal salon where I would sit, sipping champagne, while all the young girls tried on bridal gowns. I wanted to make sure I saw my girls in wedding dresses before I died. We are still going to have our salon party, but now we will actually buy a dress.

Happy sighs...


At long last.

Electrician Mike very creditably installed both BTSes, one upstairs and one downstairs. Due to the age of the house and the need for a dedicated circuit for each BTS, there was a little bit of work to be done and he did it. (Insert name) the plumber was not available but explained what needed to be done, and Mike took care of that, too.

The website gives one the impression that installation is simple and not very time-consuming; in fact, it says installation only takes an hour. Poor Mike started the work yesterday and did not finish until today, so Jenny renamed the BTS the "bi-two-det."

The new equipment has been tested and not found wanting. I have yet to test every function, but a newfound patience has come over me and I'm willing to wait... I don't want my gratification to be too immediate.

The heated seat is most pleasant. The warm air dry is similarly delightful. What happens from the time you sit on the heated seat to the time the warm air dryer shuts off is, uh, is, well, it's lovely. Lovely, lovely, lovely.

One is cautioned about using the "turbo" setting -- apparently this function is only to be used by the most stalwart individuals or by those who have help waiting nearby. It is doubtful that the "turbo" button will be pushed anytime soon. I frighten easily (ask me sometime about the TV show I watched as a child that scared me away from drugs) so will heed the "turbo" warning.

And so, faithful readers, this ends the way-too-drawn out nonsense about my potty. Unless, of course, I accidentally hit the wrong button.


The absolute worst thing about this idiot disease is wanting something to be done and having to wait for others to do it. I'm not just talking about the BTS, I'm talking about everything.

It's pointless to say this but I'm going to anyway: I wish I could do things for myself, the way I used to. Yeah, I know, if wishes were horses...

But it pisses me the fuck off that I cannot.

(Clarification: I am not angry at others, I am angry at my inability to do for myself.)


My little yellow friend

Just for the record, today was a klonopin day.

This topic is getting old

My watched POT may begin to BOIL tomorrow. Electrician Mike and his friend (insert name) the plumber are coming over to HOOK THINGS UP. Check back for an update.


I'll even pay for your ticket

I have decided to take a day off tomorrow -- without pay. Oh my gosh, I do crack myself up.

But seriously. It's the Friday before a three-day weekend and I am permitting myself a day away from work. I scheduled a hair appointment after which I may go to lunch. What I would like to do after that is catch a plane to my beloved France. My passport is near at hand and I can pack very lightly and very quickly. All I need is someone to go with.

Sigh. That's how it was supposed to be.


Jenny knows an electrician who kindly came over and looked at my more-complicated-than-I-thought bidet toilet seats (BTS). It turns out I need a little bit of electrical work done in order to install them safely. He explained what was needed and why in his technical electrician's jargon which I heard as "blah blah blah blah electrocuted blah blah blah dedicated connection blah blah blah." Whatever. I just want to get it done. I'm glad he knows what he's doing because clearly we need an expert.

Mike is a good guy and said he was very happy to have the opportunity to help us. That was nice. What will be really nice will be a working BTS.

Call me Audrey 3

You knew this was coming, didn't you? After the last post, all I could think of was "Feed me!"

Pin pointing

A year ago I could still run (sort of) and I could definitely walk. I could shower by myself and cook and do laundry and manipulate papers and raise my arms over my head and so on and so forth. Yes, I was slower and had difficulty, but I managed.

The change that occurred in the ensuing year was gradual but significant. I wish I could pinpoint when each activity demanded a little adjustment but I can't.

I was also able to feed myself. Nowadays, I am able to feed myself with my left hand IF I use my special fork (similar to the one at the bottom of this picture) or a serving spoon with blue foam tubing around the handle. I receive assistance on occasion with things like soup and salad. Holding the utensil is not the only challenge; lifting the utensil to my mouth is also problematic. There are a couple of workarounds: I lower my head to meet the fork/spoon or I support my left elbow on the table to elevate my hand. These adaptations work -- for now.

I guess this post is to pinpoint an adjustment because, as I was eating my breakfast this morning, I looked down the road to when I won't be able to do that activity anymore.

Maybe I will lose some weight and then I will just be ALS Bowbie.

I'm such a doll

When Becky was a little girl she played with Barbies -- she really played with Barbies. She had rather a collection and would dress them up, arrange them all around the family room and play and play. She had a little bit of a speech impediment at this stage (six or seven years old) and when she said "Barbie" it sounded more like "Bowbie." Speech therapy and maturity corrected her pronunciation and, as happens with all little girls, the Barbies lost their appeal.

When Cecilia discovered the dolls she played with them, too. Instead of dressing them up, however, she removed all their clothes as well as their heads. The family room was littered with naked, decapitated Barbies. Fortunately, Pokémon entered the scene and we were able to remove all traces of Barbie carnage.

I am bringing this up because I'm not able to dress myself anymore. I feel like a Becky-era Bowbie -- a fat, ALS Bowbie.

The anecdote about Cecilia is just plain funny. At least it is funny to me. I had to turn my microphone off a couple times while I was dictating because I was laughing so hard at the recollection.

Still ticking

By now I hoped to be able to report on the efficiency of my latest acquisition. Sadly, I am still waiting due to plumbing and electrical complexities. Soon. Soon. Just not soon enough...


They have arrived

Now. I must wait. For installation. I am trying to distract myself. By writing. Short sentences.


I do not want to anger the meltdown gods but I will report that so far, so good with you-know-who.


I dreamt last night that I was gasping. I woke up, gasping. My dream upset me. The question is was I gasping because I was upset or was I upset because I was gasping? Either way, it's a hell of a way to wake up.

Oh, and my toes/calves/quads were cramping. Sometimes my legs seem to stretch involuntarily and, when they do, they cramp. This. Totally. Sucks.

Yes. Back to. Short sentences. Time to. Say. Goodbye.



At 12:51 AM my bidet toilet seats reached Laurel, Maryland.


Bon bon dimanche

My goodness. If I'd known that retirement was going to be full of wonderful outings and delicious food, I wouldn't have waited so long.

Quite some time has passed since my sister and I visited our mother's grave in Winchester, so we made plans to go out there today. After the visit, we'd get lunch then come back to my house. It sounds simple but there is a lot of driving involved; Wendy lives in Herndon which is a 90 minute drive from Fredericksburg, and Winchester is another two hours northwest. Bless my sister's heart -- seven hours of driving, not including the drive to the cemetery.

To get to Winchester from my house you take Route 17 North the entire way. Once you get out of Stafford County there is a lot of farmland, horse pastures, rolling hills -- it's all very scenic and pastoral (that is the second time I've used that word in as many posts). The scenery changes slightly as you approach Warrenton, but soon you are back on a two lane highway peppered with signs for the various wineries in the area as well as signs identifying the very stately homes that sit on top of hills and in the valleys.

About 30 miles outside Winchester you come upon the village of Paris, which is nestled in a little valley near the foot of the Blue Ridge. I always thought it was charming and remote, and of course I love the name. As Wendy and I neared Paris I asked if she wanted to drive through the village since she'd never seen it. A quick left turn later and there we were. It is so tiny and sweet -- difficult to imagine it is so close to Washington DC. One of the gems this village boasts is The Ashby Inn and Restaurant, a place I have always wanted to visit. As we drove past we thought it might be nice to see if they were serving lunch so Wendy parked the car and did some recon. When she returned she was giddy with delight -- it was exactly the kind of place she hoped we would find. Out came the wheelchair, then out came I, and up the walk we went. I was very discouraged when we reached the building because there was a flight of stone steps that had to be navigated. Correction: a stone step. A portable ramp had been put down over most of the steps, leaving just the bottom unramped. We were told not to worry, three strong, able-bodied young men would lift me over this step. Naturally I started to laugh and, when they picked me up, I closed my eyes so I would not see what was happening. I will admit to enjoying the hell out of this experience because I felt like I was floating. I couldn't speak because I was laughing and I laughed even harder when we came upon a second -- and then a third -- set of steps. Each time I closed my eyes and each time I experienced the awesomeness of floating.

After visiting the not-very-handicapped-friendly bathroom, we made our way into the dining area, more like a sun room. The colors were bright and cheerful and the windows looked out onto the garden and a very beautifully manicured Dogwood tree. My sister was in raptures, as was I. We were glad of the intermittent rain because it enhanced the green of the garden and kept the sun room from being too warm.

The menu for brunch was unbelievable. For the first course Wendy got the crab and fennel soup with mussels and I got eggs Benedict. Wendy's soup was so amazingly delicious. I have never had a crab soup like it before and doubt I will again. It is something I could eat every single day without tiring of it. My eggs Benedict was equally as delicious, but this soup was unparalleled.

A group of elderly Southern gentility came into the sun room just as we finished this course. They were discussing the menu and wondered aloud about the soup. Being the nosy buttinsky we all know I am, I offered my opinion and told them they could not go wrong if they ordered it. I overheard the gentleman closest to us say, after he finished, that he wished he had a straw so he could get up every last drop. That was not unlike what Wendy said when she finished, only she wanted to lick the bowl instead.

Course number two brought Wendy chicken and waffles (I know!) and I had the shrimp and ham omelette (today was clearly egg day for me). Once again, both were outrageously tasty but the combination of chicken and waffles was unexpected and totally fabulous. When Wendy offered me a third bite, I politely declined. When she insisted, however, I opened my mouth like a baby bird and inhaled it just as greedily. Shameless.

Dessert consisted of Monocacy Crottin cheese with tangerine, rosemary, and crumble. The sharp cheese with the tangy fruit was mouthwatering.

When it was time to leave the three strongmen came to our aid once again; once again I was rendered speechless because I was laughing so hard as I floated -- eyes closed -- down the stairs.

From there we continued on our way to our mother's grave. Unfortunately she is buried in a spot too far for me to get to on foot and my transport chair is not cut out for cross country hikes. I waited in the car while Wendy deposited two roses in the vase. She stood there for a few moments then came back to the car and off we went. It was sad leaving... Mom was alone so much of her life, and she chose a cemetery so far away from us. Just very sad.

The ride home was quiet because of our visit as well as our full tummies. We detoured through Paris and waved at the Inn, then drove on. When we got back to the house, my sister took charge and got me settled before she went on her way.


This time spent with my sister was important and very meaningful. We talked quite a bit about THINGS and I am relieved to know she understands me. I was impressed with her ability to maneuver me in and out and around, considering she's not had to do so before. My sister is very strong... in many ways.


Well, what's on the schedule for next week? The bar has been raised pretty high. I am accepting any and all invitations...


My busy life

I've not posted for a few days due to a whirlwind of activity.

When I decided May 15 would be my last day of employment, my friend Tam e-mailed me with an invitation to lunch on May 20. The destination was the Inn at Kelly's Ford, which is out in the middle of nowhere (Remington Virginia) and is an equestrian center/bed and breakfast/banquet facility. It's really lovely. The dining facility is not open for lunch so we ate at Pelham's Pub.

In order to get to the pub I was transported via golf cart. The driver asked if I wanted to take the scenic route. I'm glad I said yes because the grounds are beautiful, very picturesque and serene. The terrain was rather bumpy and our driver, securely holding his steering wheel, took the bumps and the curves a little faster than I considered prudent. Thank heaven Tam was holding onto me because I'm sure I would have been thrown when we went over a few of the bigger bumps. I felt very vulnerable.

We arrived at the pub in one piece and sat out on the patio. It was a beautiful day, the first time the sun had made an appearance in several days. We looked out over the lake and the woods, the rolling hills, and caught sight of geese and a few horses -- all very pastoral.

For lunch I ordered a mushroom Swiss burger and a cup of potato and leek soup. The soup was homemade and incredibly tasty and I was able to enjoy it because Tam held the spoon and, later, the cup. The burger was one of the best I've had. Tam ordered the soup and a crabcake sandwich. While we were eating I was stung by a bee -- fortunately I am not allergic and, after I put ice on it, I was fine. Naturally we ordered dessert, some very delicious profiteroles. The pastry was perfectly fluffy and delicate, very much like the profiteroles I've had overseas.

After we got home I was exhausted from the day's excitement and took a 90 minute nap. There are some advantages to being retired.

Years ago I heard from a friend about the curative powers of bee stings on arthritis. That night I dreamt I was stung and it cured my ALS. I was heartbroken when I woke up.

Friday I had another lunch date, this time with my darling Adam. He drove all the way from Hyattsville to take me out. He called me from the road just after he passed the mixing bowl and wondered how the traffic was on the HOV. My trusty MacBook and I went to the traffic cameras site to guide him and, since we're totally ridiculous, I tried to track his progress from camera to camera. On several occasions I actually did see his Ford Explorer as it went by. We are so dumb.

I don't remember what time he arrived -- I think it was just before 1 PM. His car is higher than I anticipated and I had trouble getting in to the passenger seat. John brought out a footstool which helped a little, but I still had difficulty. No nonsense Adam took matters into his own hands -- literally. He bent over and, as I was leaning against the seat, lifted my legs and put them in the car. I was laughing so hard I couldn't speak. He pushed my butt into place and buckled my seatbelt. Satisfied with his efforts, he put the footstool in the car next to the wheelchair and away we went.

When we got to downtown Fredericksburg, Adam parked and got out the chair. Exiting the vehicle was much easier than entering -- I just had to slide my legs around and slip onto the curb. I settled myself into the wheelchair and we went toward the restaurant I had selected. Which was closed. Fortunately I had a backup plan so we crossed the street and went to the restaurant where I had enjoyed my Mother's Day lunch. There was a lovely young woman sitting at the bar reading a newspaper and I asked her if she would like to join us. It was Jenny. She had stopped to have lunch and visit her best friend who works at the restaurant. Jenny's presence solved a potential problem as I was determined not to ask dear Adam to help me in the bathroom. As it turned out it was not even an issue, but it was nice to have Jenny nearby just in case.

After lunch (Bellinis and pâté and salad; I was ably assisted by Jenny) we headed back to the car where Adam repeated his grand feat of strength, once again rendering me speechless and breathless.

Considering the age difference (20 years) and the vast differences in our lifestyles, I am often amazed at our friendship. There is a connection we share, however, that doesn't care about such unimportant things. He is truly a bright spot in my life.

Last night I dreamt again. This time I was aware that I had ALS but I could still run. I did not run for long in my dream but enough that I was able to remember it. Once again, I woke up and was sad. I wonder if I will ever get over that.

Today -- Saturday -- is quiet. It's going to rain so it is overcast and a little cool outside. Perfect conditions for an afternoon nap. I wonder if I will dream.

Sunday I am going with my sister to Winchester. We will visit our mother's grave and have lunch, then come back to Fredericksburg for a little visit. I hope the weather cooperates.


Still waiting for the bidet toilet seats. My impatience is as finely tuned as ever.


Tick, tick, tick...

Now that I've clicked on the purchase button I am impatient for delivery. I'm counting the hours until my new bidet toilet seats (yes, plural) are delivered and installed and ready for practical application.

Check out the control panel. Sort of takes your breath away, doesn't it?

As a bonus I am getting two travel bidets which are hand-held and have three different nozzles. Just imagine!

Here's hoping

The teenager who came home an hour ago was smiling and sweet. She reported that she'd had a wonderful night's sleep and felt fantastic. I hope this is the beginning of a positive trend.

Thank you to all my friends for their words of encouragement -- and caution -- where this new drug is concerned. I have resisted medication for a reason but I am hopeful our (mine and Cecilia's) combined management will result in success.

Trying something different

There is a new pharmaceutical in my house: Seroquel. It is being used as an anti-anxiety/antidepressant -- not by me, but by Cecilia. In the past couple months her "episodes" have become more intense and physically violent. Her fury is directed toward me (or anyone who stands between us). This does not happen frequently, but it does happen. Yesterday, after a particularly unnerving Monday night, she saw a psychiatrist. And now we have a bottle of Seroquel.

When Cecilia was about two years old the tantrums began. In kindergarten her behavior prompted a visit to a child development center where they decreed she had ADHD and prescribed Ritalin. I knew ADHD was not the correct diagnosis and I refused to give her a drug just to satisfy her teachers. At nine years old she was diagnosed with Asperger's -- we finally knew what we were dealing with. As she matured her meltdowns continued but seemed to have plateaued (maybe I was just getting used to them). In the last couple of years, however, things are worse. She says things that cannot be ignored, hence the attempts at therapy. And now, most recently, they can be physical. Under these circumstances my long-held resistance against medication has crumbled and I do think she would benefit -- we all would benefit -- from a little help.

The poor thing has so much on her and I wish I could make it better.

I do not excuse her behavior. In lucid moments we discuss her accountability and ways she can improve; this has worked in the past to a certain degree. It takes time, however, and these meltdowns are different from those of three or four years ago.

Today will be day number two with our magic little pill. Let's hope for the best.


The government in action

It's raining and it's cold and I forgot the file so we had to turn around. We left the house one minute before the appointment was due to start so I called to tell them I was running late and got put on perpetual hold. I was on hold the entire drive down I-95 and was still on hold at the light to turn into the office park. Just before the light changed a call came in from Social Security asking where I was so I told them I would be there in two minutes and rang off. A moment later another call came from Social Security... I was still on hold and had never terminated the call.

Once inside I met with a Very Nice Young Woman who recently celebrated one year with Social Security. Before we got started I made sure to stress that my illness qualifies me for "fast-track" processing because I have what is called a "presumptive disability." VNYW told me presumptive disabilities only apply to SSI/welfare claims. She did not use the phrase "fast-track" but did use the word "expedite." I elected to smile and nod and follow up with Ellen after-the-fact because I did not want to piss off a bureaucrat who held my application in her hands. I answered every question and provided hard copy documentation which VNYW reviewed and included in my file. At the conclusion of our interview VNYW explained the very soonest I would get a check would be December 2010 because it would take five months IF I am approved and that I would not receive any benefit for May or any of the months that pass while I am waiting. This was contrary to what I had been told and I questioned her. VNYW patiently explained that I had heard incorrectly. Once again, rather than anger Mme. Bureaucrat, I nodded in understanding. We parted amicably and I told her I would call in the next several weeks to inquire after the status of my claim.

When I got in the car I immediately called Ellen and told her the whole. She is going to call VNYW in a day or so and ensure my application is being processed properly. Ellen assures me I will in fact be paid from the date of my disability (today) and that I do indeed have a presumptive disability. It's a lot of red tape and I'm very pleased Ellen is acting as my advocate in this matter. I was so tired when I left I could barely eat a bonbon.

Retirement: Day one

I'm up, I'm fed, just need to get dressed. The new walr-ass friendly cushion is in the wheelchair. The paperwork is organized. Off to Social Security we go.


Un autre dimanche

Lynne will be here in an hour. My suitcase is ready. No, no wonderful getaway -- the suitcase is empty. We are going to my office to pack all my personal belongings to bring back home. I decided a suitcase was more efficient because, in addition to various papers, pictures, cards and the like, there are shoes and scarves and my big faux leopard coat. Thinking about it now, I wonder if the suitcase will be big enough.

Most importantly I need to bring home all my little treasures, petits objets d'art received as gifts over the years. These beauties will be placed strategically around the serenity room, making it even more inviting.

Later today, Jenny and Becky are going to assist in gathering all the paperwork I will need for tomorrow morning's appointment at the Social Security office.

I have rather a full day, don't you think?



I rather enjoy the way my feet feel, dangling in mid-air, as I ride up and down my stair glides.

When I walk, I feel like I am at mile 28 of a marathon. Yes, I know a marathon is 26.2 miles. That's my point.

9:45 AM Monday. Social Security. Starting the process.

It's after 5 PM and I am still working a little bit. I do not retire well.


No gory details, because one can't bear to recount how awful horrible disgusting humiliating was the scene at 12:30 AM.

One did not make it in time. One apologized profusely to one's husband when he got home from work at 1:47 AM. One was exceedingly grateful for the surgical gloves purchased by Rose.

One hates ALS.


One hurdle cleared

I received word today that Rose is acceptable to the first of my long-term care providers. Starting tomorrow she will come two times a week.

It's a start.

No comments from the peanut gallery, please

When I revealed my secret to Mel and Suzanne, they shook their heads and laughed. When I told Jenny, she put her hand over her eyes and thanked me for not telling her earlier. I have waited to disclose this little bit of information because I am somewhat ashamed and embarrassed. All I can say is do not judge me, just be glad I no longer have to resort to this adaptation.

I can still drive. Up until April, I was driving to and from work five days a week -- a little over 500 miles. I can still shift gears (yes, recall I drive a stick shift) but shifting into fifth gear and reverse became problematic because the position of these gears is the farthest right, one up, one down. It got to the point where I had to use both hands to put the car in reverse, which I did twice each day: once in the garage and once at home. Not a problem since the car is not moving. Fifth gear presented more of a challenge because one shifts into fifth while driving at a high rate of speed. I overcame my inability to shift with my right hand/arm by performing this maneuver with my left. I held the steering wheel firmly (using the yet to be revealed secret) with my right hand, and leaning slightly to the right, pushed the gearshift into position with my left hand. The first time I did this I was surprised at how easy it was. In the back of my mind I knew what I was doing was not something I could share with anyone, particularly those who did not want me to be driving in the first place. So I remained mum.

In addition to the problem I was having shifting gears, I found that my grip on the steering wheel and gear shift lacked substance. I decided the best way to resolve this was to improve the traction between them and my hands.

Here, now, my secret revealed: After much consideration and experimentation with various household products, I discovered a little dab of honey, worked into my palms as well as the gear shift knob and the steering wheel, made everything wonderfully sticky. Each morning a little spot was dropped into my waiting hand and away I went, happily and stickily steering and shifting, fifth gearing and reversing. I knew the clock was ticking and I was determined to eke out just a few more days behind the wheel.

I know. Very risky, very inconsiderate, totally loopy. When I pulled into the driveway tonight (forward facing instead of backing in) I let out a huge sigh of relief that I was finally finished with driving. Then I went in the house and washed my hands.

Breakup number two

Well, it had to happen. I broke up with Mike today. We both knew it was coming but when the day actually arrived we couldn't believe it. Oh, that sounds SO dramatic, doesn't it? After all, one does not break up with one's physical therapist, does one? But Mike was more than a physical therapist, he really was -- is -- a friend.

He told me that, even though he is not supposed to have favorite patients, I was his favorite. I told him that it had always been my goal to be his favorite because I am so competitive. In all seriousness, however, he is a remarkable person with a heart and a spirit and a compassion that are as therapeutic as his PT acumen.

And he is as funny as hell. I cannot count the times over the last two years I found myself laughing so hard it was difficult to catch my breath. Talk about therapy.

When I identify a new physical therapist near home, Mike is going to reach out and give them my history. No one, though, will ever be like Mike.

À bientôt

Reference the previous post: short and sweet = cake and cards. More of a fuss than I wanted but not over the top. The sentiments in the cards did bring tears to my eyes but I managed to keep them to a minimum. I looked around at the group assembled and wished for the millionth time I did not have to leave.

Another surprise came in the form of a group from across the hall. Several employees from the Institute for Justice walked over to say goodbye, bringing with them a bag full of books, movies, and notes collected from various members of their staff. The notes brought more tears as well as some smiles. The kindness and thoughtfulness exhibited by these people is really something; we don't work together... my relationship with many of them is based on waving and smiling in the hallway along with the occasional chat in the hallway or bathroom.

So. No more commute. No more struggling to park in the garage, or asking my coworkers for help with my food/coffee/pills/laptop/more food/rides to PT and on and on. I am grateful I'll still be involved until my job duties are absorbed by my replacement, to quit cold turkey would be harder than when I quit smoking.


Last day in the office.

It was my plan to leave today and send a nice note to my coworkers after the fact. I should have expected that this plan would fail, and it did. Everyone knows. Fortunately these people, of whom I am so fond, understand my desire for a low-key departure and I expect my exit will be short and sweet.

I am going to miss them.


Mother's Day 2010, plus

You remember this, don't you? Yes, yes -- twisted beyond all recognition, isn't it? However, if you know me you know I am also twisted (and, ha ha, these days in more ways than before). Imagine my delight when my eldest daughter presented me with a gift of the utmost twistedness:

I seriously doubt if anyone will appreciate it as I do, but I love it.

From Becky I got some lovely scented oil and reeds, since I am unable to light candles. Cecilia gave me a thoughtful and sentimental card, something she's not always inclined to do. We had a lovely day, a lovely brunch -- Mother's Day is always very special to me.

I was remembering last year, our New York trip. When I think back to how much walking I did, I am amazed at how much has changed.



Seventh: My stupid feet look like sausages. I don't understand why they decided to swell just at this moment, but they did and they look and feel awful. Putting my feet up does not seem to help. I wonder if this is something that goes along with reduced leg function.

Eighth: This week is my last week. While I am increasingly frustrated at the challenges I face doing my job, I am not looking forward to leaving. I have a few personal projects I am going to tackle but I will miss the interaction with the people in my office. I'm going to have to figure out a way to get out several times a week so I don't go stir crazy.

Ninth: The cotton sheets are back on the bed and work exceedingly well with the bed wedge.

Tenth: Quads are cramping like hell. Totally, totally sucks.

Okay. No more enumerating. I'll lose count, you'll lose interest, it's a no-win situation.

I have a new shower chair that is higher and has arms. It fits nicely into my shower and gives me a more secure perch. I am able to stand on my own and exit the shower with only a little help. I remarked to Jenny this evening that I thought we'd found a nice workable system. She agreed, but reminded me it was only going to work until I got worse. Twisted me laughed at the truth of this.

I am going to get worse. I'm already worse. The inevitability of this sometimes stops me in my tracks and breaks my heart. Pollyanna and her perky platitudes desert me and I'm left looking at swollen feet and ugly hands. This past week was particularly difficult, hence the lack of posts. Leaving work, filling out forms for all manner of benefits, saying goodbye to what was...I've shed quite a lot of tears. Practical me hasn't quite regained control but I am working on it.

Anyway, happy Mother's Day to everyone.


Should be fun...

Click here to view the invitation!

Becky McGee

1523 Toney Lane
Manakin Sabot, VA 23103

Saturday, June 5, 2:00PM

Please join us for a CORNHOLE TOURNAMENT to raise funds for ALS research! Fred Snyder was kind enough to let us have it at his house, so there will be plenty of room for everyone and everything (pool, grilling out, frisbee)! Burgers, hotdogs, and a keg will be provided, anything else please bring on your own. It's a $30 buy in per team ($15 per person) with all funds raised going towards ALS research. The grand prize for the talented team will be two $50 Visa gift cards. Let the festivities begin!


More notes

Fifth. I don't know how long it has been since I have required help getting out of bed but I would say easily 3-4 months. I mention this because it seems I now require assistance getting INTO bed. The last couple of nights my legs have been too heavy and have had to be lifted. On the occasions when I try to raise them myself I put too much pressure on my back, and that will do me no good at all.

Sixth. Bed wedge + satin sheets = FAIL. I kept sliding. Cotton sheets going back on the bed today.

Moving right along

Yesterday's mail contained good news -- the smaller of my two long-term care policies is authorizing benefits effective April 27. I do not have a waiting period on this policy (thank you, Art), I can start making claims immediately. The only catch will be if they do not authorize payments to Rose. I'm hoping she will meet their requirements since she is certified, despite the fact she does not come through an agency. Once I get that one detail ironed out I will be able to engage her twice a week.

I may also look into getting somebody to come in on Sundays, just for a few hours. I'm often by myself in the afternoons and this would give me an extra pair of arms and legs. I wonder if caregivers are even available on Sunday... I guess I'll find out.

This should keep me busy for a while.



Where there's a will, there is a way.

No one was around this morning and I was determined to get clean. Bath gloves are the most effective so I decided to try to put one on my left hand. I got the first three fingers into the wrist area without any problem. I struggled trying to get the pinky similarly placed; using the inadequate forefinger of my right hand didn't help, if I got the pinky in then the left forefinger popped out. My teeth came to the rescue and, after several attempts, I managed to get all five fingers into the palm area of the glove. Now to get the fingers into their assigned spaces. My teeth were less effective here. What finally answered was placing the empty glove fingers against the edge of the sink, holding them in place with the heel of the right hand (which had, until now, just been a disinterested observer), wiggling the left fingers into the appropriate spot, then tugging down with my teeth. The entire process took 12 minutes.

Having accomplished the "gloving" I was able to perform my morning ablutions very satisfactorily. When I was finished, I looked like this:

All in all, a good experience.

(Note: that is not my sink, those are not my bath gloves, and those are not my teeth.)

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