THE ODDS (Debbie Does ALS)


Plunk plunk plunk

No, that is not the sound of anything unpleasant dropping into any porcelain bowls in my rooms of rest. Rather, it is the sound of me dropping additional dollars to adapt those porcelain bowls. Not content merely to sit, "go," and freshen, I must needs be able to stand on my own -- at least as much as I can for as long as I can. Consequently, today I purchased risers for my potties; 3 1/2 inches high, they will elevate the commodes sufficiently to allow me to stand more easily. The best part of all is the name: Toilevator. (I used to work with someone who did as little work as possible but had her head so far up the boss' ass she was considered indispensable. She was pretty full of shit, too. With a slight change of letters we can apply a similar word to her: toilevader.)

We even have a graphic today (aren't you glad I did not provide anything more graphic than my verbal account the other day?). As you see, the Toilevator is very simple in design and application, the perfect solution.

(Not my bathroom or my potty.)
(Yes, I added the arrow and the stars. This is a Very Exciting Graphic.)

Not cheap, but not INSANELY expensive. Just expensive. What was INSANELY expensive was the quote we got from the plumber. Fortunately, dear friend Tam knows a plumber who she is sure will give me a better price. Tomorrow is phone call day and he is on the list.



Another disgusting evening at Chez McGee

It did not start badly. In fact, it was very pleasant. My kindhearted neighbor came over to prepare my dinner and stayed for a very nice visit. Marsha has five children so taking care of my dinner needs was a snap for her. She offered to do more -- showering, bathroom, etc. -- but I'm not yet prepared to make her a potty pal. Fortunately for her.


Oh -- before you read further, let me warn you this is one of those ugly entries that contains nastiness. You of delicate sensibilities may wish to avert your eyes. Those of you who remember me from classier times please do not let this account tarnish your memory.

To continue.


I didn't make it. AGAIN.

I was sitting in my bedroom, writing e-mails. Suddenly I was uneasy, I felt a gurgle. It hit hard and it hit fast, with no warning. I couldn't move. When I tried to get up, I lost control. Fortunately granny panties are sturdy and held fast (I do believe they are made of lightweight iron). Step after precarious step, I made my way into the privy and plopped -- fully pantied -- onto my poor potty. There perched, I pondered my predicament. I could not think how to remove my poop-filled unmentionables without befouling my bathroom or totally alienating my child. The solution finally came to me: cut each side and let the offensive garment drop into the toilet. Cecilia, though horrified and disgusted, came to my rescue and did the handiwork while commenting that I might need a diaper.

The bidet was no match for this atrocity. Very gingerly I stepped into the shower (note to self -- one of the grab bars needs to be tightened) and pulled out the big guns. Not for the first time was I grateful for my detachable shower head.

It's amazing how resourceful one can be under desperate circumstances.

I guess it's true -- shit happens.

End of story. Thank you for listening. Now, go to bed, and pray you do not feel a gurgle...


Clinic: 25 June 2010

I've waited too long and can't remember all of my stupid dream. I'm sorry but you will not be treated to a glimpse of my twisted inner self. Dodged a bullet there, didn't you?

Instead I'll give you a clinic report.

First, the obvious. I still have ALS and, also obvious, it's getting worse. No surprise there.

Second, despite all my efforts to maintain my pleasingly plump person, I lost 5 pounds. I was sure the nutritionist would say something but she did not, perhaps because she was leaving to catch a flight to Spain. My 5 pounds was not noteworthy -- to her -- but I was delighted. I always had to work hard to lose weight, so losing weight without trying is a whole new experience. I know, I know, it isn't necessarily a good thing but I am making lemonade today.

Third, my FVC dropped from 70% to 53%. (My first attempt actually measured a 48 but I always get a do-over.) (Captains log, star date July 1, 2010: received the follow-up report from clinic which indicates a measurement of 49%.) This reading surprised me; I expected it to drop but thought it would be in the low 60s, even high 50s. As expected, there was conversation about using a bi-pap (which I really do not want to do) and, after inquiry from Lynne, Dr. Bayat advised that an FVC of 20% was not life-sustaining. Lynne asks ridiculous questions. On the plus side my blood oxygen was 98%.

An abnormally high blood pressure reading was duly noted and, if the trend continues, blood pressure medication may be prescribed. I am so sick of medication, the thought of taking more makes me nuts. I would take up running again, but my heart is not in it. You're laughing, right? That is funny on so many levels, I am impressed with my own wit.

Next report to be issued at the end of September.

10 years

Well, I'm back. The car is restored to its previous glory, all for the low low price of $1740. Much has transpired here over the last six days, all of it way too fucked up to recount.

In the not-too-fucked-up side of things:

The race was a great success. I'm told there were approximately 100 runners, two of whom bear the surname McGee. Yes, Jenny ran her very first road race! It was a miserably hot afternoon but she never gave up and pushed through to the finish where her sister was waiting. One of my friends told me the best memory she has of the race is the look on my face when I saw my girls together at the finish line.

It delights me no end that my daughters are running -- are runners. Today, June 25, marks 10 years since I first put on a pair of running shoes and ran 2 miles to get my cardio so I could lift weights... after which I smoked a cigarette. Anyway, I am running vicariously through my daughters now, and enjoying every one of their successes.

I have pictures but cannot find an easy way to move them to the blog without having to save each one individually, a task I find onerous and frustrating. Please be patient.

The new power chair made its debut at the race. A donated portable ramp and a friend's truck allowed us to transport the chair, and I tootled around the boardwalk and the picnic site with a level of freedom I haven't enjoyed in a long time.

Naturally, when I got home I started looking for handicap vans. Craigslist had several vehicles in both Richmond and Washington; I found one in Annandale with low mileage and a lower price tag. Lynne and I are going to look at it on our way to clinic this morning. A friend of mine at the Honda dealership ran a Carfax report for me which indicates the car is "clean." (I can't help but be reminded of the movie Poltergeist, when the diminutive spiritualist leaves the poltergeist-ridden house and declares "this house is clean," only to be proven wrong when all the bodies buried underneath make their appearance.) In all seriousness, I'm sure the car is fine and I hope it works out because I would really love to check this off the list.

It's 8:30 AM so I need to get ready to leave. Coming up: my strange dream from last night as well as highlights from today's clinic.


Death of a mailbox

I've lived in this house for 21 years and today, for the very first time ever, I had a conversation with my next-door neighbor. We've never been introduced but he knows me and I know him because, after all, we've been neighbors for 21 years. Why this break in our mutually distant relationship? I had to apologize and offer reparation for his mailbox, which lay mutilated and very clearly dead not 50 feet from where we enjoyed our first meeting.

Daughter number three, newly licensed and eager to "get out of here," was going to venture to a shopping center this afternoon. Running little errands near the house wasn't enough -- she was ready for the big game. With my new, hideously expensive car insurance in place, I kissed her goodbye and hoped everyone would stay out of her way. From my vantage point in my bedroom I saw her get in the car and head toward a near by driveway so she could turn around. I waited. And waited. And waited. I thought perhaps I had missed her when all of a sudden she appeared in my room, gasping and crying, incoherent. She managed to tell me she'd hit one of our neighbors bushes; when I looked out the window and saw an impression of the inside passenger door handle on the exterior of the car, I wondered what the hell sort of bush she hit. After she moved the car into the driveway it was revealed that the bush was in fact a mailbox.

She loaded me into the transport chair and over we went to Mr. Campbell's. He was very kind and said reparation was not necessary, perhaps John could help him put up the new mailbox. We chatted for another few minutes and then left, stopping to view the corpse and pick up the passenger side mirror which had been amputated from the car.

It does not take a rocket scientist to figure out what happened -- this was a clear-cut case of inexpert backing up. My suggestion (actually insistence) that she practice her technique in the "wrecked" car was disregarded. I chuckled when she said the car needed to be repaired ASAP so she could go out Friday night "like a normal teenager." We will be lucky to get the car back in a week's time -- I'm fairly certain the passenger door will have to be replaced. Yes, it's that bad.

To say truth, I'm glad that, if something was going to happen, it was something like this where no one got hurt but a poor innocent mailbox. It will certainly be a learning experience for my headstrong and overconfident little miss. And trust me when I say she will not be going out until she has perfected the art of backing up.


Breathing easy

I haven't had THAT THING since November 2008, when I underwent THE PROCEDURE. Even though the most obvious physical manifestation has 99.99% disappeared I still "enjoy" some of the other lovelies, particularly CRAMPS. The past couple days I have been unhappily reminded that menopause has not yet been achieved because of the pain (PAIN) emanating from my internal girl parts. Here I am, four months away from my 52nd birthday, un-menopaused.

Another member of the household is on a similar schedule and she very unkindly shares her PAIN with me. It's a long story, one you've heard before, but the saying "misery loves company" must have been written with her mind. Little Miss Miserable was in full sharing mode last night and I was beginning to worry when relief arrived in the form of the big sister who suggested a sleep over. This idea was not immediately rejected (as were all the previous suggestions), in fact it was embraced and off she went.

So at 9 PM I found myself home alone. Everything I might need was near at hand on my new hospital table and I settled myself happily and comfortably in my new recliner. Life was good. I grabbed my laptop and was going to finish yesterday's entry when I started to choke. I don't know what happened -- I suspect when I inhaled I caught a little bit of saliva -- but it was the worst choking episode I've had in ages. It seemed to take forever before I could catch my breath, and even then they were short and insufficient. My breathing didn't return to normal for a good five or more minutes and I must confess that I was scared. The sounds I made didn't help -- like a 50-year three-pack-a-day smoker who struggles for every last bit of air. Very tentatively I took a few sips of water and finally regained some calm, but I was on high alert and it took some time before I was comfortable enough to rest my head on the back of the chair.

Guess what? After this little episode my cramps were gone. I think I'd prefer menopause.


Another new driver in the house

Rollator. Check.
Hospital table. Check.
Lift recliner. Check.
Loaner power chair, complete with Roho cushion. Check.

Thank you, ALS Association loan closet.

As I write, I am sitting in the recliner with my feet up, thanks to the handy little button next to my left hand. Pushing the button will also change the position of the chair to one more standing-friendly. This is well timed because I have trouble standing from all but a few seats in my house, including the storage bench at the foot of my bed where I have been doing quite a bit of sitting. The bench is relocating as the chair has achieved Most Favored Nation status.

The rollator -- a fancy walker with wheels and brakes -- gives me much needed balance for the little bit of walking I do; I can't work the brakes but I can rest my hands on the frame, which is sufficient for the moment.

Joe, the technician from MED, adjusted the power chair to my specifics so I will be comfortable until I'm able to order my own custom chair. I test drove it around the basement and managed fairly satisfactorily -- I need to divorce myself from thinking it's like a car, particularly when I go in reverse. I think it's funny I am having issues with reverse considering not long ago I wrote about someone else having a similar problem...

The purchase of an accessible van is now a higher priority -- since I have the damn chair, I may as well use it. Plunk, plunk, plunk.

Cushions,wedges, things on wheels...oy vey.

It's now 10 PM and I'm finally getting around to finishing this post. Lynne came over to get my dinner and do my hair and I showed her all my new equipment. She oohed and aahed over all the goodies, most especially over the power chair. While she was here we took it for a test run on my newly completed ramp (thank you Mark and unnamed large person). I successfully maneuvered the chair from the family room through the doorway into the serenity room, out the back door, up the ramp to the driveway. And then back again. I was feeling a little cocky and did not go slowly and carefully through the door back into the family room and took out a little chunk, but it's nothing a person like Mark or the unnamed large person can't easily repair.

We may do well to remove the door.

When I was testing the chair I felt a little self-conscious, like I was a wannabe ALS patient trying to fit in where I didn't really belong. Then it hit me -- as it does still quite often, right between the eyes -- that I do belong, I'm not a wannabe, and I am entering the next phase. The next "new normal."

Oh, Henry

One day, during one of our various phone calls, Adam and I were discussing Rose and how she cares for me. Adam asked me if Rose was thorough when she gave me a shower, and said it took a special sort of person to be a caregiver. We both laughed because neither one of us has the sort of fortitude required for that profession.

The first time I gave over and let Rose have the management of my shower I was a bit uncomfortable, but the positives outweighed my discomfort and I reveled in all my head to toe, fresh cleanliness. I did not shrink from her thoroughness, I was grateful for it.

Since the phone call, however, I have been like a stupid, giggly kid whenever Rose is being thorough. All I can think of is my conversation with Adam and our silly comments. Maybe I should take one of my little yellow pills before my shower...


Minority report

As I walked from the dining room to the stair glide this afternoon, I lost my balance. Silly me, I thought I could catch myself using my left arm. My inadequacies were made very apparent when my left arm slid OFF the arm of the couch and I fell ON the arm of the couch (a la train from Bayeux), looking rather like an ungainly Leaning Tower of Pisa (I was going to write Pis-ass, but doesn't it look awful?). Fortunately my ugly couch has almost as much stuffing as I do, so there were no bumps or bruises. Equally fortunate, John was nearby and was able to pull me to a standing position pretty quickly.

My balance has not been perfect for some time and, in recent weeks, seems to have gone south. My friendly and ever helpful patient services coordinator from the ALS Association, Ellen, is getting me some transitional equipment. I'm told I should hear something by Wednesday.

Anyway, I was walking to the stair glide because I was going to the Fredericksburg ALS support group meeting. (Before today I attended the Annandale group meetings, initially because they were on Sundays and did not conflict with my work schedule. I didn't go yesterday because Becky was up.) It was a good meeting led by a very knowledgeable and helpful woman who knows veterans issues inside out, which means nothing to me but I'm in the minority here. Not only was I the only non-veteran, I was also the only woman. The other women present were spouses of the ALS patients. As it happens I met one woman at a Pampered Chef party eons ago at the home of a mutual friend; another woman was one I've seen at Mass over the past 20 years. It just goes to show that Fredericksburg is a pretty small town. Considering how small it is, we have quite a lot of ALS here.

Update: some of my equipment is going to be DELIVERED tomorrow.


Had a good session today. I have in hand another prescription for home PT which I may use sooner rather than later, but for the moment all is well.

Something to make you smile


Facing my fears

I accidentally pressed "turbo" when I meant to hit "feminine." This error was immediately corrected, my heart pounding as I fumbled for the proper button.

Having experienced a nanosecond of turbo, however, I am intrigued and may accidentally press the wrong button again...


Will you walk into my parlour?

Day six. I was going to write a post on day five but I fell asleep. I am such a lazy butt.

So, day six. For the past six days a little black spider has been living on a little white tile in the bathroom near the wall. He (she? it?) is there every time I go into the bathroom, exactly the same spot every time. Most of the time he just sits there, happily settled as I go about my business. Occasionally he gets spooked and disappears into the wall or crawls up toward the air vent, but returns in short order to the exact same place.

On day four I pointed him out to Jenny, who tried to catch him with a wad of tissue. He jumped and disappeared from sight. I was a little disappointed -- in a strange way I was becoming very much accustomed to his presence. He returned later in the evening to my great delight. We respect each other's space and I figure if he is on the little white tile he is nowhere near my bed -- even though the "you eat spiders in your sleep" story is a myth, there is still a little fear hiding somewhere in my brain.

I don't know what sort of spider it is but I know what it is NOT, and it is not a brown recluse or a black widow. If he were either one of those this would be a different sort of entry.


Slight change of plans

I am having lunch with an old friend today. We commuted together via bus as well as carpool for almost 20 years. Bil also influenced my early running, for which he earned the moniker "Evil Bil" or EB (pronounced "eeb”) because I tried so hard to keep up with him I overdid it. Of course he was to blame, I would take no responsibility for my own poor judgment.

So anyway, I'm having lunch with him today. Because of the timing I asked if he could take me to my physical therapy appointment afterward, and he kindly agreed.

When I got up this morning and visited my lovely bidet, it occurred to me I would not be able to go several hours without a visit to a bathroom, especially after having lunch out. I'm to the point where I need assistance, nearby if not directly. I may have known Bil for a very long time but he is not a potty pal. Consequently, I will come home directly lunch is over and, once the warm air dry is turned off, will head out to PT feeling lighthearted and, more importantly, light-bladdered.


I need a vacation.

The morning started off like all the other mornings since May 17: up early watch the news, have breakfast, etc.

I was expecting Tam later in the day for a visit and to begin my organization project. For some reason I thought she was coming later but she reminded me with her phone call that she was coming over early and was bringing bagels. She arrived just before 10 and made me the best bagel with lox and cream cheese that I've had in a long, long time. A bonus: duck bacon! It was delicious.

After we ate we set to work on one pile of papers I brought back from the office as well as a box that had been in the trunk of my car. A small start but very productive and I was pleased with how much we accomplished.

Not long after Tam left

Ellen Cochran arrived. (Do you like the revolving door?) Ellen gave me a chicken. Yes, a chicken. An adorable, stuffed chicken who clearly has worse hair then mine. It is going to be one of my mascots. We had a nice visit, discussed several of the items on my wish list, and talked about my Social Security disability benefits. The time flew and before we knew it it was past 3:30 PM and she had to run off to another appointment.

As she was leaving

my friend Tiffany arrived, bringing with her a delicious jamocha milkshake from Arby's. (Yes, it's a revolving door theme. Clever, isn't it?) I met Tiffany when I was training for the 2008 New York City Marathon so she did not know me when I was the fastest girl in town (that one is for you, Tam). Tiffany is a natural runner and very speedy but has had some problems with her foot. Barring a couple of exceptions in February, she has not run for a year. She's hopeful she'll be back on the road soon, however, and then everyone better watch out.

We had a very nice visit and then away she went to her appointment.

No one came in the door but Cecilia and I went out so she could practice parking. There were bright spots and there were not so bright spots; the relationship between steering wheel and tire while going in reverse needs to be more closely examined. I wrote her driving instructor and asked that he focus a bit more on this technique.

Jenny arrived when we returned and shuttled Cecilia off to a homework project collaboration.

No one came to the house but I had a 6 PM telephone interview with the company providing my long term disability benefits. Unfortunately, she did not call until 6:30 PM, at which time

Grace arrived to make my dinner and do my hair. Since the interview was estimated to take approximately 30 minutes I rescheduled for the next day. I couldn't ask Grace to wait that long.

Grace left at 8 PM. I settled myself in front of the TV and watched the news and waited for Jenny and Cecilia. It was quiet and very restful.

I'm tuckered out. Sweet dreams.


Becky came up with an idea a few months ago: a cornhole tournament to raise money for the ALS Association. With the help of her fiancé (smile) and their roommate, as well as other friends, they put together a great event this past Saturday. Her roommate's father provided the venue -- a sprawling piece of land near Richmond complete with pool -- and her friends provided a number of cornhole boards.

I don't know how many people were there but it was a great party. I know they emptied the keg (imagine that) because it was floating on top of the melted ice. Becky found some 2 foot long straws at the grocery store and bought them for me; they were perfect for drinking beer AND water because I did not have to lift any bottles. I'm sure all Becky's friend got a real kick out of that.

There was quite a bit of competition during the tournament -- some of those players were unbelievable. I played a few times several years ago but I don't have an arm or a very good aim so my bags slid off the board if they made it at all. One young woman was bemoaning her terrible cornhole ability so I offered to play opposite her to make her feel better. My offer was rejected. Thank heaven.

I got there at 1 PM and did not leave until after 7 PM. It was a hot day that had threatened rain, but the cornhole gods kept any bad weather at bay. Despite the heat (and the late afternoon flies) I stayed outdoors, very much enjoying all the activity.

Becky was very pleased with how much money was raised and with how much fun everyone seemed to have. She did a wonderful job.

(I have purposely avoided any reference to the urban dictionary definition of cornhole, but I did hear from a couple people who wanted to make sure I knew it was not just the name of a game. To be perfectly honest, when I first heard of this game I was scandalized at its name but I've gotten over it. Imagine, me scandalized at anything.)


She's a keeper

Last night (Thursday) Rose came at 4 PM instead of 6 PM because she wanted to do some personal things later in the evening. She was just about to wash my hair when the power went out.

A power outage at my house means more than no lights -- it also means no water. I am on a well so no power means no pump means no water.

Cecilia was taking a shower. Thank goodness she was in the rinsing stage so she was not too terribly put out (about the water -- more later on WiFi).

I called the power company to report the outage and was told power might not be restored for several hours. Groan. So much for my shower and clean hair.

Rose, who has been concerned about my swollen feet, went to work on some stretching and range of motion exercises on my legs and feet. Finally satisfied with the results of her work, she settled me in the big ugly chair in the living room and made me put my feet up.

Cecilia started grumbling because there was no WiFi, growled something about wanting capris and could she rip up a pair of jeans. She went back into her room, growling and ripping. Hmmmm.

Since we were unable to cook, my dinner consisted of some chicken salad sprinkled with dried cranberries (a particular favorite). Situated as I was in the big ugly chair I was not able to hold the plate so my very kind Rose fed me.

I called the power company to get an update on restoration and was told possibly 9 PM. Groan.

Rose asked if we had any candles and I was embarrassed to tell her I did not know. Since Cecilia was by this time asleep, Rose went out to buy some candles. Just before she returned the power was restored. It was 8 PM. I told her to go, that I would manage just fine, but she would have none of it. She insisted on staying.

At 10 PM -- having washed my hair and given me a shower -- she declared that her job was done and, making sure I had my feet up, finally went home. She is really something else.


Plunk, plunk, plunk

Shopping/wish list:

64 GB iPad
Gel seat cushions
Hospital style rolling table for my laptop etc.
Rollator, to use in the house until I commit to a
Power wheelchair, which will require a
Vehicle to haul above-referenced power wheelchair, and
Ramp from driveway to patio door
Lift recliner (maybe two of these)

The power chair, vehicle, and ramp will take quite a bit of planning and I have to make sure I have a good grip on my finances before I commit to another vehicle loan.

The cushions and table can be gotten fairly simply, as can the iPad. It's just a matter of purchasing them.

The rollator may be borrowed from the loan closet. I have a request in already for a lift recliner.

This list just keeps getting longer and longer.

More on the Louise theme


This is me when I get cold

I was watching Seinfeld the other night and saw this. I apologize for the poor quality but I think it still manages to convey what happens to me when I get cold.



My doctor said 12 months*...

I have taken an accelerated death benefit on some life insurance (I've written about this before). Having been cautioned about the possible tax consequences of taking this benefit, I did some research and found the following on the IRS website, to wit:

Exclusion for terminal illness. Accelerated death benefits are fully excludable if the insured is a terminally ill individual. This is a person who has been certified by a physician as having an illness or physical condition that can reasonably be expected to result in death within 24 months from the date of the certification.

Lovely. One less thing to worry about.

*Remember: My neurologist had to state that I am not expected to live longer than 12 months. I don't have to die quite that soon.

June brought...

An FRS of 26 and a yellow trunk, attributable to my breathing. My head, thankfully, is still green.

Picture of the day

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