Jenny and Becky had contrived to spend the day after cooking meals to store so that dinnertime is more easily managed when I return from work in the evening. We made a list of meals, fleshed out the ingredients we'd need and hit the grocery store. With the exception of three little items, we bought only what was on the list and headed home. The kitchen was a frenzy once we got started: John W volunteered to cut up the chicken and ham, Jenny and Becky worked together on meatballs, meatloaf, lasagna, and glop (most people will call this stroganoff), and packed and stored everything when it was finished. My freezer hasn't been this full since I went through an "easy do-ahead gourmet" phase a few years ago. Thank you, my darlings (you, too, John Wallace) for this kindness.
Today brought another treat: Harlem Globetrotters tickets in Richmond! Since my usual Basketball Buddy was reluctant to venture away from her beloved roller rink, I invited my 12-year old goddaughter who was happy (I think) to go. We had super seats--on the floor!--and were entertained from beginning to end. Theresa took lots of pictures, which I'll share when she does. It was a fun way to finish the weekend.
On the drive home, Theresa asked me if I would be her sponsor at her Confirmation next year. I am touched that she asked. Confirmation isn't until next November...I wonder where I'll be at that time.
Okay, the drivel stops here. Sweet repose and rest and all that jazz...
Klonopin. Instead of the amitryptline, Ellie prescribed Klonopin.
I'll keep it handy but seriously doubt I'll take it, for the same reasons I mentioned before: I take too many pills already and the side effects are crazy. No matter how I long for diarrhea and an even more impaired motor function, the possibility of seizures and personality changes (I wonder which of my personalities would change?) and a host of other things will keep this drug from passing my lips.
Cecilia helps me get ready; she turns the shower head so it is on my favorite jet, she helps me take off my shirt, and she unhooks the bra. Then she disappears.
I can't help but catch a glimpse of myself in the mirror -- what has happened to me thus far is laid bare (ha ha, pun intended). I make a point of only looking at my eyes, sort of a survival trick. Peripheral vision being what it is I'm still able to see "the big picture." I look away.
I can still do for myself here in this little, private space. While seated, I soap up the altered face towel, the towel on my lap and the soap held carefully in my left hand. Washing is slow, deliberate, and frustrating. My arms just don't go where they need to go -- try imagining not being able to wash your shoulder or your neck without employing some convoluted maneuver. It is fatiguing.
I think I've mentioned before that I wash my hair by resting my elbows on my knees as I bend my head over. For the most part this is effective but I will confess that I spend a long time rinsing out the shampoo. I love the feeling of the water on my head; the shower jet I use provides more sensation than I get with my weak fingers. It is so relaxing I hate to stop.
Interestingly, while I am feeling so relaxed my mind begins to wander and I start with the "why me?" line of thinking. Pity party thoughts circle, sometimes landing, trying to sneak into my head. Most days I am able to shake them off and replace "why me?" with "why not me?" Most days.
Drying off is no walk in the park either. The towel is heavy and hard to hold. Not being able to wrap my hair, I once again bend my head over and press the towel to the top of my head. When I am finished, however, and lotion has been applied (another exercise in frustration) and the towel has been hung up (on the doorknob) and my nice fluffy slippers are on my feet, I'm just happy I was able to do it all by myself.
(NB: This entry began to take shape during my shower last night. It was much more comprehensive, introspective, cheesy. As it was put down on this virtual page I cut much of what I was going to say. You can thank me the next time you see me. Hugs and kisses to all.)
My street has three houses on one side and two on the other. It's short. But treacherous, as the driver learned. As he finished his first pass and moved away from the other end of the street, he got stuck. Attempt after attempt to get unstuck just dug him deeper in. My neighbors collected their shovels and made their way to rescue the poor man, whose discomfiture was apparent from the lurching back and forth of his vehicle. Happily he was able to extricate himself from his predicament without any assistance, much to his (and our) relief.
He made better plowing decisions after that and left us to dig out our driveways. Again.
I try hard not to become frustrated but it's a major effort. Anyone who knows me knows how I hate not being able to do what I want when I want. I guess that makes me rather a spoiled brat, doesn't it?
Spoiled or not, I wish I could clean off my car.
I was going to shop this weekend but now we are supposed to get snow. Lots of it.
I talked to Dr. Ellie yesterday about the stupidlaughingcryingshit and how I felt my speech was affected. She said my mouth was very likely fatigued from the exertion and my speech should improve (NB: it has). She's also prescribed amitriptyline which is supposed to be helpful on several levels. I'll keep it on hand but won't use it, at least not just yet. Why? Well, for one thing, I take too many idiot drugs now and am not keen on adding another to the cocktail. Second, take a look at the side effects. I'll pass.
C sees Jannan today. I'm crossing my fingers we have a pleasant night afterward.
You know, the snow may not be such a bad thing after all. I'm exhausted and am more than ready for the weekend.
The worst thing -- apart from the crying and the laughing -- was my speech. It was as if my mouth and jaw had frozen, rendering me much less intelligible. This frightened me and made the crying and laughing even more violent.
In my (admittedly cursory) research following the event, I was unable to determine how speech is affected; however, since emotional lability seems to be bulbar-related, it stands to reason that speech is a part of it.
It's very likely hypervigilance and/or fatigue, but I felt "off" today. I was more aware of the movements of my mouth and the thickness of my tongue. Good God, I can't believe I actually dictated that sentence.
Methinks the best course of action here is to drink a lovely glass of Noche. Or two.
I use my feet to apply lotion to my feet; a dollop on each instep is spread about using the heels, toes and arches.
I use the knobs of my dresser to adjust the back of my bra strap. I won't even try to describe the process.
I lie flat on my back with a rolled up towel along my spine to help keep my shoulders from curving forward.
I drink tonic water for the anti-cramping quinine.
I use face towels with slits cut in each corner (for easier hold-ability) when I shower.
I hold my car key fob in my mouth and lock the door by pressing with my lips.
I turn on my bedside lamp with the knuckles of the first two fingers of my left hand.
I weave a nail file through the first three fingers of one hand to file the nails of the other.
Similarly, I weave my fingers around the stem of a wine glass. For wine drinking purposes. Duh.
This list, as with everything else, is a work in progress.
But. It's done. And I added a little special spice so it's uber-fabulous.
2007: having recovered from an abysmal Chicago, a successful Richmond, and a deep digging Philadelphia, I ran the half marathon instead of doing the behind-the-scenes work. It was not my best time -- 2:08 -- but it was certainly respectable. Louise waited for me at home while I enjoyed postrace refreshments at what we now refer to as "Pmokey Bonerz."
2008: I don't have any real recollection of what happened last year, but I know I did not run the race so I must've been a cheerleader. I can't believe I can't remember.
2009: it's 9:34 AM; the race started two hours ago. I'm in my kitchen, dictating this and waiting for someone to wake up so I can have some coffee. There was some conversation yesterday about my going to the race in my role of cheerleader but it all hinged on the weather, which threatened to be icy and rainy. I don't see any ice but it certainly is raining. I have become a fair weather cheerleader and am a disgrace to the regimen. (Okay, let me be totally honest. I'm glad I'm indoors.)
Lynne told me yesterday she is going to run a 50K in Virginia Beach next week. The good friend part of me is very happy she is doing this because it is the logical next phase for her. The stupid part of me is sad I didn't know about the plans earlier. I hate I'm not any longer a part of things at that level.
Last night I dreamt I was driving in New York City and had to go down a hill which was so steep it seemed it was almost a 55° angle (Is that right? No, not a right angle, I mean is 55° steep -- more steep than 45°? I never know.). It was impossible to see any other cars and I could only barely see the traffic light as I rode the brake going down the hill. The light turned red and I pushed harder on the brake and barely managed to stop. When the light turned green I pulled into a bus depot where they were taking applications for employment. I went into the building looking for some breakfast and was told my companion (companion? I wonder where he came from?) was upstairs. The only way to get upstairs was to climb various circular stairways and each time I would get to the next level I was told my companion had gone ahead. I could catch a glimpse of a dark pinstriped suit and knew instinctively that was who I was looking for, but I never did catch up. Crazy, crazy dream.
My wild child has had a mostly successful weekend. There was a hint of a rumble Saturday afternoon when we ran into Target -- I will call it an "unexpected expectation" moment. We moved past it, however, I think because she had had an enjoyable afternoon at a friend's (!!!) and was anticipating going to the skating rink AT NIGHT. The lesson I have learned here is not to take her shopping. Ever again. I mean it. E-VER.
Had enough? I hope you have a lovely Sunday.
The Top 10 Pick-Up Lines Heard in an ALS Single's Bar...
10. Your powerchair or mine?
9. Hey there Good-looking, what's your FVC?
8. My hospital bed has 26 different positions.
7. Wow! That vent tubing really accents your eyes.
6. I bet you look great in a pair of Depends.
5. I would really love to get under your bipap mask.
4. Ithinyerbodivvulenwanugomyu (speech device broke).
3. As you can see, I'm drooling over you.
2. Bartender, get the little lady another Ensure and I'll take another shot of Lactalose.
And, the number one pick-up line heard in (my imaginary) ALS single's bar is...
1. Is that your feeding tube or are you just happy to see me?
Please meet Wilbur Weston, a regular on the soap strip Mary Worth. Wilbur, for the most part, is unexceptional and has recently been introduced to Facebook which is why we see him seated before his computer. You may ask why I have posted Wilbur's picture here. Why, indeed? Look at Wilbur's hands! Except for the pudgy thumb muscle, these look like my hands! My fingernails are prettier, though.
So. My hands and I have had a pleasant evening. Upon arriving home I discovered D#3 intently doing homework. Not wanting to disturb her, I decided to try to prepare dinner. I'd purchased some gnocchi yesterday and thought that might answer. First, to open the plastic packaging. I used a steak knife and cut away around the perimeter of the package. I had to use my right forearm to hold the package in place as I use my left hand to cut, but it was a huge success. Next, I had to get the pot out of the cupboard. We keep our pots and pans in a lower cupboard; I bent over rather than knelt, rearranged some of the smaller pots and, with both hands/wrists, lifted the large pot to the counter. Another success -- I was almost giddy! I put the pot in the sink and turned on the tap and filled the pot about half way. This next step was more difficult: I had to lift the pot from the sink to the stove. My left hand grasped the handle on one side, my right wrist supported the weight of the other. I managed to get the pot on the correct burner and we were cooking! The water boiled and I dropped in the gnocchi, very pleased with myself. Another difficulty was encountered when I had to drain the pot but, with Cecilia's able assistance, that task was managed as well.
It wasn't much, but it's more than I've done in a very long time. I must admit it was a bit wearying, but well worth it. Miss C got her homework done with no interruption and ate a delicious meal prepared by Wilbur Weston.
You can submit via a comment (please advise if you do not want it published) or email me (address below the PLM badge).
I'm curious to see what you suggest, how much of it fits my former and present ability, and what my number is after all the additions and subtractions.
Thanks to everyone.
It has caused a lot of conversation on PLM. What do you think?
Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members. I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week. He agreed and I am thrilled to share his thoughtful essay.
Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.
I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective. It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up. "That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.
Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end. I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech. But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.
Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.
I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things." Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child. Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course!
But suppose you get to where you've lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired. At some point, no matter who you are or how strong, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.
I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so. I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say "Enough."
I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.
I hate coming home.
I am not a very good mother.
Looking on the bright side does help me manage Louise, but sometimes a bright light shines on reality and it's impossible to ignore. When this happens I have to rearrange my thinking, accept the new normal, and push on.
For some reason it's always higher at clinic, 135+/80+. Runner me HATES getting a reading at clinic. I wonder, is it that I hate BEING at clinic for what it represents, which manifests itself in my blood pressure? By that reasoning, why do you suppose my blood pressure is so GOOD at the gynecologist? I've never been crazy about those visits, either.
On to other things.
We had a good meeting with Jannan tonight...at least initially. The more C talked about what is going on in her world, the more agitated she became. Jannan observed that C has clearly defined ideas about how people and situations are supposed to be and, when they don't meet her expectations, boom. Cecilia listened with teenage attention, grunted acknowledgment, and we wrapped up.
The ride home was painful. I stopped at Wegman's and, as it was raining, I pulled into one of the many handicapped spaces. This resulted in tears and accusations that I was taking advantage; I relocated because she's right. I was being a big lazy butt. Anyway, went in and did my shopping and found a magazine she likes so I bought it, too. No good deed goes unpunished; the "spread" she'd been hoping to find wasn't there. Yep, more frustration. The ride home was painful. What? I already said that? Well, it bears repeating my darlings. I went home the very long way in the miserable, gloomy rain, feeling miserable and gloomy myself. Little Miss Sunshineblackholegirl was fetally positioned within her hoodie, having run the gamut of shrieks and moans and grunts. Silently, I pulled into the driveway and she, silently, helped me put my purse on my shoulder, gathered all the groceries, and unlocked the door. She'd worked back to her calm place.
She is managing some of her academic expectations right now, hopefully successfully. I'm staying out of it.
I wonder what my bp is right now?
No alarm in the morning. Luxuriate in the warm, soft sheets. Open eyes and see that you have slept for nine hours -- mmmmmmm. The house is quiet. Gently (and happily, easily) roll out of bed and shuffle into the kitchen. While nibbling the chocolate croissant purchased from the European bakery, read a bit of the newspaper online.
Make the decision to go back to Pratt Park. It's later than usual but the weather is cool and the sun is shining and you realize you'd be a fool not to take advantage of such a gift. Because the Weather Channel advises that it is 42°, two longsleeved technicals are put on. Out the door you go. Upon arriving at the park you realize you have left your key fob back at the house; this is an inconvenience because it means you must carry your key, the key that is situated between two Allen wrenches and blue foam tubing. Oh well, it is only a minor inconvenience after all. IPod hooked on to the waistband and large key contraption tucked into the waistband and off you go, rejoicing in the warmth of the sun and the cool breeze and the strength in your legs.
You look down to ensure that your key is in place only to find that your shirt is covering the key, which is pointed outward from your belly and makes it look very much like you are VERY happy to be outside. So as not to frighten other passersby, the placement of the key is adjusted and the shirt is tucked in. Better to have an odd key contraption jutting from your waistband than to have people think you are a sketchy tranny wandering the park.
Shortly after you begin the second lap you decide to try to run, an excellent decision as it happens. The wearing of two shirts, however, was not such an excellent decision and before you finish the lap you realize the outer shirt must come off. As you are incapable of performing this task on your own you espy an unsuspecting fellow runner stopped at a bench drinking her water and beg her assistance. She kindly complies and speeds off before another request can be made. Unburdened by the second shirt, the third lap is much enjoyed. Running in shade and downhill, walking the rest of the time -- lap number three flies by and a fourth lap is considered. Since you feel so strong you go for it and feel good the entire time. Where is this energy coming from? The extra sleep? The chocolate croissant? The single shirt? The 3.3 miles done two days earlier?
A question forms in your mind: do you get tired because you run so little, or do you run so little because you get tired? Perhaps more time outdoors is what's needed.
I am going to make a firm commitment to get out as often as I can. The beautiful thing about the winter is that it is not necessary to go out at the crack of dawn.
I hope everyone else is having as beautiful a day as am I.
Glad I'm not on the road!
Louise did not interfere too much, largely due to the fact that everyone took very good care of me. The only glitch was when I had to use the restroom; after washing my hands I was not able to turn the door knob because my hands were slippery. Fortunately Jenny had kept an eye on my progress and came to the rescue.
And today--what an incredibly beautiful morning. After yesterday's fog and rain and overall dreariness, this morning was a sparkling, bright diamond. The air was crisp and clean and a delight to breathe, the perfect conditions for a walk at Pratt Park.
Items of note:
The crazy old man pulled in just after I did but I never encountered him at all--what a relief.
I realized during the second lap that a visit to the restroom was in order and I made it in time.
I met two runners going the opposite direction and remembered how it felt to run and talk at the same time.
And, while it was not pretty or for any long duration, I ran, too. I got tired quickly but, after a rest, I did it again. Another one of the park regulars stopped me and asked how I was getting along and I told him I was trying to run while I could. He told me he couldn't run and that he missed it; I told him I didn't want to miss it quite yet and went on my way.
It occurs to me I have not written about running in a long time. Shame on me. With this fine weather I am going to make sure I take advantage of every opportunity.
Another thanksgiving day, yes?
The biryani turned out moderately well. I would give it a 2.5 out of 5 for presentation, and a 5 out of 5 for taste. I seem to be the only one at home who enjoys it -- that just means that much more for me.
It's been a good week and odd days for Miss C. Last night there was a hint of irritation evident when I asked her for some help; I told a friend it was like a light bulb went off and a punch in the stomach at the same time. I really hate that Louise is part of Cecilia's life and I want to minimize the impact as much as I can. Sweet Jenny has offered to be more available in the evening to help help. I hate that she is impacted by this as well but she is older and is better able to manage and cope.
A long time friend and running buddy has offered me a stair lift that her mother used. I don't quite need it yet but, trying to be proactive, I am arranging to have it installed. The husband of one of my muscles is going to do the heavy lifting. I am very, very, VERY fortunate to have such amazing friends.
I don't know exactly what it looks like, but this will give you an idea:
Oy fucking vey. Would you ever have thought it?
This past Saturday I went for a 3.3 mile walk. I am a total machine. The cold weather was a gift but it did bother my hands -- I'm going to have to get some mittens that are easy to put on.
I'm very much looking forward to Thanksgiving at Becky's. She always manages to host a lovely dinner for any number of people; the count last year was, I believe, 18! We are down to a very modest 10 this year.
I'm sure everyone remembers how I went on about a zebra chaise lounge
for the serenity room. As such a luxurious piece of furniture is out of my price range, I have (quite happily) settled in with a cozy leather loveseat and chair (gotten from the aforementioned muscle). The zebra, however, has not been forgotten. In keeping with my budget I have purchased a delightful new piece of lingerie, to be known as the zee-bra. Alas, there is no graphic. But imagine, if you can, yours truly lounging contentedly in the serenity room dressed in such finery. Yes, it is dizzying, isn't it?
That is all I have for now. Happy Thanksgiving, my sweets.
- I can't scratch behind my right shoulder*
- I can't put on or take off my coat
- Stupid drivers
- Craving a food I can't make**
To sort of balance the crazy things, let me tell you about things that I love:
- Cecilia's report card (five As and two Bs) (the two Bs are in AP classes) (so they are weighted)***
- My Honda dealership and the two Mikes****
- Veuve Clicquot*****
- Terps and Wizards basketball*****
- My Mac*****
*My shoulder has been making me crazy today. It's actually been making me nuts for about three days but today I went from nuts to crazy.
**I am craving biryani in the worst way. If I can enlist the help of a daughter or a friend this weekend, I will make pounds and pounds.
***She enchants me, amazes me, brings me to tears.
****I pulled into my Honda dealership at 6:30 PM; Mike 1 and Mike 2 were both on hand to greet me. I was given a ride home and they will pick me up when my car is ready.
*****No explanation necessary.
To be continued.
Talk of suicide, hurting herself. Irrational demands. I don't know what to do anymore. One thing I have done is schedule an emergency appointment with the therapist.
Later: some calm has been restored but there are eggshells all over the minefield. I'm afraid to move.
Tomorrow is the 2009 race. Becky is running the half (along with bandit John), as is Ricardo. Lynne, Janice, Jenna and Jannette (and doubtless some whose names begin with other letters of the alphabet) are running the full. It's supposed to be good weather, thank heaven.
I suppose there will come a time when I won't feel pangs of sadness. Until then, I will plaster a smile on my face. Or blow kisses.
It was another difficult night with my sweet girl. We seem to be going through quite a rough patch these days. I won't burden you with all the details because, honestly, it's just more of the same. It is at the point, however, where I have neither the creativity nor the energy to find effective solutions. These sessions beat me down and leave me feeling frustrated, angry, exhausted. It is up to me to be a rock; something she can hold on to as she makes her way through the troubled waters of her episodes. I don't always do such a great job and in that regard I feel as though I'm failing her.
Hopefully the meetings with the therapist will prove beneficial despite C's seeming unwillingness. Maybe she can provide some guidance for me as well.
The right hand has been fairly quiet. The only interesting development is that the index finger no longer curls, rather, it points. All the time. When Mike noticed it during some ROM exercises on the right arm, he moved my arm a la John Travolta in Saturday Night Fever.
Yeah, Mike is a funny guy.
I am concerned that the heightened activity in the left hand is a portent. I mean, I KNOW I'm weaker--it's become a struggle to open the front office door--but does this signal a ramp up in the decline? Sigh. This is a ridiculous question and train of thought. The disease is progressive, after all. There is no point in worrying about it. Better to spend my energy and thoughts preparing for further adaptation.
I was up all night with a cough, the most recent iteration of this stupid cold. Naptime.
PT: is the SAT test finished yet?
PT: do you know when it is supposed to be over?
Me: no, I'm just waiting.
PT: have any kids come out yet?
Me: not yet.
PT: so it's not over yet?
Me: clearly not, we are all just waiting here and there are lots of cars still in the parking lot.
PT: my son said it would take about five hours (note: at this point it was four hours and 15 minutes into the test).
Me: I don't know, I'm just waiting.
PT: (stares at me, for what seems an eternity.)
Me: just sitting here waiting...
PT: (rolls up window, drives away)
I wonder what her son will get on his SAT. Perhaps he takes after his father.
Last night, Cecilia and I were leaving a restaurant in Central Park (which is not a park and is central to nothing) and, since Central Park is so poorly designed, I found myself having to make a U-turn in order to go home. There was quite a bit of oncoming traffic so I began my preparation: left hand/arm pulled down on the steering wheel while the right hand kept it in place. The car ahead of me went through at the first opportunity and I inched a little further ahead, turning the wheel just a little bit more. Finally I spotted an opening and took my foot off the clutch only to feel the front left tire begin to go over the curb of the median -- I had misjudged its location and had overprepared for the turn. For a brief moment I considered just driving over the curb but, not knowing how this might impact the undercarriage and realizing this would set a bad example for the new driver in the car with me, I elected to stay put. I corrected my positioning and waited for the next break. Fortunately my second attempt was successful.
This episode is in direct contrast to the U-turn I negotiated on October 7, when Adam, Ricardo, and I went to see David Sedaris. I had arrived in DC too early so I decided to park near the theater and bide my time catching up on e-mail. The spot I had chosen was easy (too easy, as it turned out) to find and I congratulated myself on being so lucky. As you can guess, I was in a no-rush-hour parking zone and it was, in fact, rush hour. The meter maid did not give me a ticket but told me I had to move, and advised that the spaces on the opposite side of the street were not rush-hour spots. The trouble was there were no spaces. As I made my way up the next block a car vacated a space on the non-rush-hour side. I knew if I circled the block this space would be gone so I, crazy fool that I am, made a snap decision and started a U-turn in the middle of the street, cars parked on either side, GW students everywhere. Remember my limitations -- this was not a smooth maneuver, I call it my 18-point U-turn. It was ugly and my arms worked hard, but I got the space. I didn't take out any students and I probably pissed off only a dozen or so drivers. The ultimate reward came after the performance when I walked the half block to my car and was already pointed in the proper direction for home.
For what it's worth, I try to avoid U-turns whenever possible. Driving, anyway.
There were three voice messages on my phone tonight. One, I knew, had to do with the delivery of my new washing machine; the other two were mysteries. People rarely leave messages because I rarely listen -- I am more inclined to return a missed call. Anyway, since a message about the delivery of my washing machine is listen-worthy, I gave my voicemail a ring.
The first message was a total shock. I have not heard from this individual for more than a year -- the last time was when I was in New York City for the 2008 Marathon. At that time, he left me a message saying he had come to New York and wanted to see me, to support me at the race, I should call him at his hotel. I did not call, I deleted the message. This guy is one of those "negative energy" relationships I purged last year. Knowing that any conversation with him would be unsettling, I pressed "7" and deleted the message.
The other two messages were unremarkable; my washer will be delivered between 130 and 330 tomorrow afternoon.
It has also been more than a year since I received a communication from my brother. I suspect he is living comfortably with all his rationalizations.
I'm tired. Time for bed.
I did decide to work from home today, a very wise move on my part. Rolled out of bed at 7--the time I usually get to work--and was immediately grateful for the extra sleep.
At 8:00 AM it was time for my baclofen, the first of three for the day.
At 10:00 AM it was time for rilutek and lithium.
2 PM called for another baclofen. I'll have the last of these at 8 PM.
4 PM will be time for another cold tablet.
10 PM is the time for the second rilutek and lithium cocktail, along with my multivitamin and COQ 10 pill. I will not try to explain what COQ 10 does, but Justin mentioned it and said it couldn't hurt, so I added it to my regimen.
Look what I've become. One of those people who live by their pills. Pretty soon I'll have to get one of those pill organizers. I'll dye my hair blue and will take to wearing muumuus.
Scratchy throat, which alternates between swollen and irritated to swollen, very irritated, and painful. Runny nose. My eyes feel like someone poured dust into them. I don't even have a word to describe how my ears feel, but they are not happy. Nope, not happy at all.
An edict was issued at the office directing anyone who was sick to stay home. I do believe I will work from home tomorrow. I'll load up on echinacea and vitamin C, I'll sleep if (haha, when) the fatigue hits, and I'll not spread this vile crud any further.
I really feel like shit.
I tripped going up the stairs at one of the tube stations. My right foot caught the step and I fell forward, landing on my left knee, elbow and pinky. It took several minutes to readjust, shift myself into a seated position, and (with Lynne's help) get back on my feet. Props to the kind Londoners who stopped to offer assistance.
Was this a true ALS fall? I think so. The fatigue I experienced after so much exertion (walking, sightseeing) surely impacted my ability to lift my foot sufficiently.
If I wanted to attempt another such excursion I would not be able to go without bringing a companion as the simple, everyday tasks we take for granted are difficult, even impossible: putting on and taking off a coat and other garments, using keys (including key cards, which are très difficile), not to mention shouldering a backpack.
So long independence.
Lynne was a champ and was always there to assist. She helped with everything, and I truly put our friendship to the test. As a gift to her I am going to keep out of her way for a while.
Anyway, we returned home Monday and today -- Wednesday -- I am still feeling pretty beat up. When we got off the plane my arms and legs felt so sketchy I was worried I would not be able to drive. Fortunately this was not the case, but the fatigue has stayed with me. I did not sleep well Monday or Tuesday night and tonight I am again up later than I had hoped. The only saving grace is the two hour nap I took earlier this evening.
Saturday I do not have anything at all planned. Well, yes I do: I am going to spend the day in my serenity room with my book and my iPod, and will give in to any drowsiness I feel at any time. With any luck Sunday will find me restored and rested, back on my game.
While we were enjoying our beverages, one of our local running club friends arrived on the scene with his son and his son's family. The friend, Art, was one of the contributors to my team, and his son's family (including in-laws) were there to show support as well. Coincidentally, the father-in-law had lost his mother (also a Deborah) to ALS some years before and has a sister-in-law who has it. Way too many coincidences.
The walk started at 11 AM. All my muscles were there: Jenny, Becky, Wendy and Mike, John Wallace, Jeff and Patti, and, of course, Lynne and Kendall. Other of my muscles were there in spirit, having contributed very generously to the walk. Another muscle, my half sister Tracy, had mailed hoodies embroidered with "McGee's Muscles" for us to wear. I certainly do abound in support and love, don't I?
You will notice that John and Cecilia are not listed. Unfortunately, the stress that has been plaguing my youngest daughter continues. It was best that she stayed home.
The rain that had threatened all morning decided to make intermittent appearances just before and during the walk. Everyone else pulled up their hoods, huddled in shelters, or pulled out their umbrellas, but I held my face up and let the rain fall. It was refreshing, even cleansing. It didn't last very long and before we knew it the sun was trying to peek out. When we returned there were hot dogs and cookies -- unfortunately, no more beer! That didn't matter (too much) as we were all having a very good time laughing and talking.
It was a good event. Kudos to the ALS Association for all they do for us.
The leaves are turning. On Monday last week they were just hinting at color, by Friday they were a beautiful sight to see. I had a thought as I was driving down one particularly lovely road: these trees and leaves are the most beautiful just before the leaves die. Is that irony?
Tuesday. Day after tomorrow. Air travel. Large pond. Pints. Aaaahhhhh.
I walked this morning. It was cold and bright and breezy and fresh. And for the first time in seeming AGES, I ran. Just a little. Breathing wasn't too bad, but I don't have the wind I once had. Tonight my legs are a little tired, but I wouldn't change a thing.
On the negative side, I had a very unpleasant experience in the loo.
For some time I have had increasing difficulty in "pulling down" which is even more problematic when the situation becomes "urgent." I no longer wear certain pants for fear of having an accident. When walking today, I wore some of my loosest cropped pants.
About halfway through my third lap I felt it start. I knew if I was walking I'd be okay until I could get to the restroom. The closer I got, the worse it got. I made it to the stall but was having no luck getting my hands into the waistband. The more I struggled, the worse it became. I finally managed to start "pulling down" but was too late. I couldn't help it.
Don't misunderstand--it wasn't a complete drenching, but it was enough. I made my way back to my car, found something to sit on, and came home. Embarrassed, angry, and sad.
Thank goodness I'd had a little bit of good runnin' or it would have been a miserable morning.
Today was also the Marine Corps Marathon. Enough said about THAT topic, but it's still hovering around in my messed up little brain.
Two and a half hours until Monday. The 26th.
October 22, 2009
A chemical cousin of a drug used to treat sepsis dramatically slows the progression of amyotrophic lateral sclerosis, or Lou Gehrig's disease, in mice.
The results offer a bit of good news in efforts to develop a therapy to stop or slow the progression of a disease that generally kills its victims within just a few years.
In a paper published in the Journal of Clinical Investigation, scientists studied the use of an enzyme known as activated protein C (APC) to slow the cell death that occurs in ALS.
"We're able to significantly extend the lifespan of mice who have an aggressive form of ALS," says co-principal investigator Don Cleveland. "The compound also extended the length of time that the mice were able to function well despite showing some symptoms of the disease, and it reduced the pace of muscle wasting that is a hallmark of ALS."
While the investigators say that more research must be done before the enzyme is tested in people with the disease, they're encouraged that the work involves a compound that's already been proven to be safe and currently given to patients via a common injection for another condition. The team hopes to test a treatment in patients within five years.
The work was done by researchers from the Univ. of Rochester Medical Center, The Scripps Research Institute, the Univ. of Notre Dame, and a Rochester-based start-up biotech company, Socratech. First authors of the paper were Zhihui Zhong at Rochester and post-doc associate Hristelina Ilieva at UC San Diego.
The researchers studied mice with a mutation in a gene called superoxide dismutase 1 (SOD1), which plays an important role in keeping cells safe from damaging molecules known as free radicals. While the cause of most cases of ALS is unknown, scientists know that SOD1 plays a role in approximately 3% to 4% of cases-–providing an opportunity to study the disease's initial steps, which occur long before key nerve cells appear sick or die. In addition, recent studies have suggested that the accumulation of mutant forms of SOD1 is linked to most cases of sporadic ALS.
Cell death is central to the symptoms of ALS, a chronic disorder of motor neurons in the brain, brainstem and spinal cord, which results in a progressive paralysis that generally kills individuals within five years of onset. Currently there is no cure or even a treatment that can effectively slow disease progression.
In a surprising finding last year, a team led by Cleveland found that SOD1 mutations weaken the crucial natural barrier between blood and the spinal cord. In effect, blood vessels in the spinal cord become leaky, allowing toxic substances to flood into the spinal cord. Because of the defect, motor neurons are exposed directly to biochemical byproducts of hemoglobin such as iron, which forms reactive oxygen molecules that injure or kill neurons.
Now, the team has shown that APC dramatically lessens the activity of the SOD1 mutation. This protects neurons that are under assault by blocking the synthesis of aberrant forms of the molecule in motor neurons and other cells in the spinal cord. These include microglia cells, which the Cleveland laboratory has shown play a key role in the inflammatory response and progression of ALS. In addition to reduced SOD1 activity, the flow of dangerous byproducts of hemoglobin into the spinal cord was eliminated by APC, saving neurons.
Currently, the group is studying alternate forms of APC, in an effort to create the form that best quells the symptoms of ALS while causing fewer unwanted side effects, such as bleeding. The researchers say the form of APC currently used to treat sepsis carries an increased risk of bleeding and likely will not be appropriate for treating ALS in humans.
While other researchers are exploring the possibility of silencing SOD1 to treat ALS, Cleveland noted that most approaches would require invasive surgery and delivery by direct infusion into the spinal cord. APC, in contrast, is already approved as an injection.
Source: Univ. of Rochester Medical Center
(AFP) – 1 day ago
WASHINGTON — An enzyme similar to that used to treat serious sepsis could be used to slow the progress of the motor neuron disorder known as Lou Gehrig's disease, according to new medical research.
A study, released late Monday, found that mice suffering from the disease experienced slower cell death when treated with the enzyme, called activated Protein C or APC.
The protein also extended by about 25 percent the life of mice suffering from a particularly aggressive form of the disease, which is formally known as amyotrophic lateral sclerosis, according to the study.
The report, which was published in the online edition of the Journal of Clinical Investigation, was produced by researchers from a group of US universities and a biotech startup company in New York state.
Among other promising developments, the study found the compound extended the amount of time that mice suffering from the disease were able to function normally, despite showing some symptoms of the disorder, which is incurable and almost always fatal.
The protein also slowed muscle wasting associated with the illness, which is named after the star US baseball player Lou Gehrig, who died in 1941 after suffering from the disease.
Though additional research will be needed before the treatment can be used in humans, the researchers said they were encouraged that the breakthrough involves a compound that is already used to treat patients with sepsis and has been proven safe.
They hope clinical trials on patients could begin within five years.
"The success of this research project has been very gratifying, and we are hopeful that a form of APC will ultimately be useful as a treatment for this disease," said Berislav Zlokovic, a professor of Neurosurgery and Neurology at the University of Rochester.
The researchers found that APC may also be useful in mitigating some of the secondary effects of the illness, including a mutation that weakens barriers between blood and the spinal cord, allowing toxic substances to enter the spinal cord.
And after the walk will be the family version of Oktoberfest -- where we celebrate all the birthdays that occur in October. That will be a nice diversion.
And, one week from today, I will be on an airplane headed to a distant land where I will consume many pints with my buddy, Lynne.
So it seems I am sufficiently occupied, yes? Yes. For the most part. There is one more thing I plan to do, sort of a ritualistic cleansing of both my spirit and my closet. I have a bin in my closet that contains a lot of running gear, running gear I no longer wear. The odd pair of shorts -- once considered much too large -- may be kept, as well as a few nice, loose, long sleeved technicals. Beyond that it's off to Goodwill. There is no point in keeping these things around.
The same holds true for some other random items. If I am unable to manage them, it is time to go. One might think this is a trifle depressing but I view it in a very positive light: I am transitioning.
When I'm finished I will raise a glass full of the pint-y stuff, thanking all that is being discarded for their years of faithful service. It will be a fine tribute.
Kay, who is Pakistani, is going to host the next get-together at her home where we will eat authentic Pakistani fare. She promises it will be spicy, my idea of perfection.
It was a wonderful way to spend a Sunday morning, with wonderful friends. I am very much aware how fortunate I am.
So here it is, what you have all been waiting for: a demonstration of how I use the zipper pull to put on my socks. I apologize for the poor sound quality and for the amateurish feet, but I think you get a good sense of how this works. On the second foot the pull got stuck so it was not as fluid a demonstration as I would have liked, but it did give you an opportunity to see how I then pulled up the sock by my heel.
There was also a video demonstrating how I put on my shoes -- it seems to have gone missing in cyberspace. I will try to re-create at some point in the future. Until then, please enjoy the sock demonstration.
It was warm on the Friday we flew from Washington into O'Hare, it was warm on the Saturday we busied ourselves around the city of Chicago. We were all fairly resigned to our fate and decided to make the best of it the next day. Sunday morning we awoke to temperatures in the 70s, ungodly weather in which to start a 26.2 mile race. In defiance of my own rule never to run a marathon if the temperature was more than 50°, I took my place among the thousands of other stupid people.
I don't remember all the specifics but I do remember it was painful. At mile 10 I thought I was going to die; at the half I got sick and made the decision to quit. Having been instructed by Adam to carry my cell phone, I called him and discovered that both he and Jeff had called it quits as well. We made our way back to the hotel and waited for Lynne and Adam's sister, Anne. Those two fools had decided to stay in the race, despite the now 92° temperature AND despite the fact that the race had been canceled due to the intense heat. I am still amazed and impressed that these two pulled it off.
That was my last race pre-diagnosis. I ran in Richmond in mid-November and did a great time. For me.
What got me thinking about this? Today is cold and rainy, almost perfect marathon weather. As I poured my coffee I started to think about what sort of running gear I would wear on a day like this: shorts (naturally), a long-sleeved technical shirt (over a tank, as the long sleeves would come off around mile 3), a ball cap, mittens, and my leopard print ear bags. Instead, I am wearing my jammies, drinking coffee, writing this, waiting for Cecilia (who is taking her PSAT). Being out in the rain isn't much fun if you aren't running, especially in these temps. Anyway, as I was thinking about what I would be wearing today, I remembered what I was doing this time last year, and I started thinking about what I was doing two years ago. Chicago was a race I had hoped to run a second time in cooler weather. Oh well. Maybe I will go back to Chicago one day just for the hell of it.
Today I start taking baclofen. Any of my fellow ALS-ers have any personal insights into this drug?
I pick up C Claire in an hour. I may just have time for a quick nap.
I didn't make things any better when I ordered this:
Hot chocolate is a sleepy time drink.
When I was in line at Starbucks I had every intention of ordering an Americano but when my eyes saw the words "hot" and "chocolate" I was powerless to resist. Those two words leapt out of my mouth before I had any idea what was happening. Do I regret it? Not one iota.
I don't regret the whipped cream, either.
Okay, enough of this. Time for coffee. Unless anyone has a nice pillow they'd like to give up...
On another note, we are a week and a half out from the Walk to Defeat ALS (October 24 in Richmond). I encourage you to forward the link to anyone you know who might be inclined to support this very, very important effort. Thank you for all of your support, financial and otherwise.
My "wogs" have turned into plain old walks lately and, except for the occasional pop-in by Lynne, are solo events. My iPod keeps me company -- I listen as much to podcasts as I do music and the time passes enjoyably. Lynne met me for an hour yesterday while I waited for Miss Elegant at her SAT class.
Today I decided to meet Lynne and Janice after their three-hour run. Earbuds in, podcasts playing, I walked before the anticipated meeting time. What a walk -- the air was exhilarating and felt like an old friend. I wasn't running, but the temperature brought back such fabulous memories that it didn't matter; I was out there in it anyway. At one point, about an hour into my walk, I saw a deer cross the road; not long after I saw a fawn bounding back the opposite way, not confident enough to make it across. He and his mother were now separated -- how were they going to reunite? There was too much traffic on the road for the doe and she stayed hidden; as I came nearer I saw her sneak back into the woods but she did not go far and I saw her standing stock still behind some low hanging branches. I crossed the road and tucked into a trail hoping to see the reunion, but the cars (and likely my scent) kept the deer out of sight. I went on my way.
The course I walked today is part of the half marathon course that Lynne designed. During the race, you encounter some killer hills past mile 11. When I used to run the course this was the worst part -- sometimes the hills were too much and I had to walk. I went down one of those hills on my way out which meant I had to come back up on my return. My glutes have not worked so hard in a very long time.
Ultimately, I walked for two hours. As planned, I met Lynne and Janice and we shared a refreshment just like in the old days. It felt good, very good.
Behind the scenes: Sweater is larger than necessary to permit independent undressing, and to cover the panel on the front of the jeans where one would ordinarily find a zipper; boots are zipped only partway, just above the ankle.
My own little Potemkin village. But it sure felt nice to at least look a little like I used to. I'm getting so sick of black pants I want to scream.
She stuns me.
The nice waitress at IHOP this morning asked me what was wrong with my hands. This prompted a fresh flood of tears in what has been a rather teary week. I have noticed that, during these bouts, the corners of my mouth involuntarily pull down. This must stop. I don't want my face to freeze with all those horrible lines and wrinkles.
So, yes, it's been a rough week. Starting with the clinic last Friday, Louise has been standing right beside me, bumping into me, mocking me. Rather than pointing out how lucky I am thus far, she reminds me instead of what I am no longer. And I, foolish idiot that I am, play right into her hands.
I suppose I am grieving. This hurts like grief; it penetrates way deep inside and feels terrible.
As I am wont to do, I will get past this. If only there weren't so many reminders -- distractions, as a beloved friend so eloquently put it -- but there are, and I have to get my mind right and push forward.
(Thank you, dear friends, for putting up with me this week.)
Marine Corps Marathon
Montgomery County Marathon In The Parks
Ocean Drive Marathon
New York City Marathon
North Central Trail Marathon
Washington's Birthday Marathon
Virginia Creeper Marathon
New York City Marathon
Florida Gulf Beaches Marathon
Washington's Birthday Marathon
Shamrock Sportsfest Marathon
Marine Corps Marathon
Washington's Birthday Marathon
Ocean Drive Marathon
Ocean City, MD Marathon
Richmond Marathon (POST DX)
New York City Marathon