THE ODDS (Debbie Does ALS)


Should I worry?

Sigh. I fell AGAIN. I was going up the front steps at Kenny's. I was carrying my laptop and had my tote on my shoulder. As best as I can recall, my foot hit the step and down I went. I have a small scrape on my right knee, my first two fingers on the right hand are also scraped. My left wrist hurts to the touch--it's VERY hard to steer.

But I'm fine, the laptop (my first concern) is fine.

So should I be concerned?


The ride continues

Tomorrow will be better. Thank you, cherished daughters (and hija cuatro), for providing such a lovely distraction.

Where would I go.

I have the signal abnormality the neurologist was looking for and which would, under the right circumstances, make me eligible for the T-7 MRI. However, I am not sick enough, so I cannot participate.

This same restriction also renders me ineligible for drug trials, one of which is going to be conducted at MY hospital in the near term. I am very frustrated.

Why must I be sicker when I've had my diagnosis confirmed by four different neurologists?

Today is not a good day. Part of me wants to go away, from everyone and everything, and just be gone. No, not part of me. All of me.

Tis better.....?

I cried this morning for the first time in a long time. Kendall and I were discussing my earlier question about trading one more good long run for ever running again, and I said I was glad I'd HAD the longs runs I'd had, so I could remember them. The counterpoint to that, of course, is knowing what I'm missing. We joked and said "it's better to have run and lost than never to have run at all..." So cheesy. But it hit me where I store my tears, and out they came.

Part of this stems from a conversation I had last night, I was asked how I'm doing, if I'm still running. When I said I am maybe getting in 6-7 miles A WEEK, I was told how they (the inquirer) could never have run that at all. Which is not relevant. Because I COULD run longer and I DID run longer. Apples and oranges.

I have an MRI at NIH today. I look forward to the nap.



My apologies to C Claire, who says my hands are gross and look disembodied.

The right:

The left:

Right. Notice significant atrophy in the thumb muscle, and how swollen are the fingers:

This is as far as I can go when making a fist with the right:

Side by side:

Here is an earlier posting--I think there is a big difference since May.


150. I no longer care about the measurement. Really.



What? No guesses about tomorrow's raised arm measurement? I told Mike I was shooting for a 153. Probably a little ambitious.

A special thanks to Kendall and Cecilia; they were both great help today. I wore a suit, the jacket of which has many buttons. Kendall buttoned me up after our workout (translated: 20 minutes on the elliptical and 5 minutes stretching my arm) this morning, Cecilia unbuttoned me this evening.

This puts me in mind of something that happened this past weekend. I have a pair of casual cotton pants -- the last pair of pants I have with a button and zipper. I had a difficult time buttoning them on Saturday -- I got them buttoned, but only just. Recognizing there would be difficulty if I had to use the restroom during our dinner out, I changed back into one of my pairs of "easy" pants. I joked about retiring the cotton pair, saying I would consign them to a watery death in the ocean. We all laughed about finding the pants washed up on the sand or hanging from one of the fences protecting the dunes. Sunday morning, however, I packed them. I'm not ready to retire this pair just yet. I might not wear them, but I'll still have them.

Just to clarify: the buttoning process is more difficult because my left hand is getting weaker. So is the right, so, even when working together, it's not enough.

I think it may be time to upload some new pictures. I'll see if I can get my resident photographer involved, if I can get her away from taking pictures of the bird and the cat. These won't be fun pictures, they'll be a visual record of what's happening.

Maryland plays Duke in five minutes. Hope it's a better game than last time.


A brief note

Just goes to show: a relaxing weekend away and my numbers tank. Today I got a lowly 144. Yes, naturally I must strive for better for Thursday. Anyone want to hazard a guess?

During the Saturday morning run with certain members of The Team while we were at Bethany Beach, I wondered about something. The Team makes running look so effortless, they lope along and talk--it's so easy for them. I wondered, if I was given a chance to do one more long run at that pace, talking with my friends, taking on hills like the machine I wanted to be, but the trade off was that I would not be able to run again, would I do it. I have to say, I gave it a ton of thought. Haha, not like I'm being given that opportunity, right?

Oh, something to make note of. My right thumb and forefinger have ceased to serve any real purpose. Mush, they are.


She of the competitive nature

Today's raised arm measurement: 152. Go me!

In the grand scheme of things, this doesn't mean much. After all, it won't make me well. But now, for the time being, I feel as though I'm maintaining.

If I've not said it before (and I know I have), let me say now that I absolutely adore my physical therapist. He is phenomenal.

Oat Meal

Oatmeal ... its everywhere, its everywhere
Well some dimwit suggested I give mom some oatmeal thru the peg tube. Let me tell you about the mess I have, its in my hair, my clothes on the ceiling'
I think I did sumthin wrong
i don't understand? was there a gastric explosion?
LOL, no I couldn't get it to go thru the 60 cc syrenge so I went int he kitchen and tapped on the plunger and out it came everywhere, what a mess. Hmmm bet if I had a house keeper they would wish they worked somewhere else at this point.
I remember reading a post from (DELETED). She had sneezed her oatmeal all over her careworker. Laughing We just have to laugh at these mishaps.
Maybe more liquid in the oatmeal for the tube. Make it really thin.
(DELETED) so sorry for this event. Was the oatmeal consistency similar to that of ensure or was it thicker? If it was thicker, this may have contributed to the "explosion"
Next time make the oatmeal thin and to be sure chop it in a blender,
oh dear, you're not using whole rolled oats are you? the cut/instant would be best. Better yet, how about oatbran? very fine consistency compared to oatmeal. Don't make it too thick.
to heck with that, got the mess cleaned up and she got cream of wheat instead lol

The conversation above is from this morning's PLM forum. I cracked up when I read it. Sort of.

Let me put it on record right now that I don't like oatmeal, I have never liked oatmeal, and I do not want oatmeal shoved down a feeding tube. Just sayin'.


Brownies 151

Last week's raised arm measurement at PT: 150. This morning: 146. Not bad. I told Mike my goal for Thursday is 151. Such an overachiever.

It occurred to me today, as I came back from lunch and had to go through three sets of heavy glass doors, that eventually I won't be able to pull open the doors. As it is now, if I use my right hand, I only can pull the door open a smidge, then I have to use my leg/shoulder to open it the rest of the way. I'm still okay with the left, but the left is oftentimes holding whatever I can't hold with the right. It's frustrating as hell.

One of the guys here at the office was talking about his recent leg injury which put him in crutches for a time. He was saying how he never realized how much he used his leg until he didn't have it. There's that whole "taking for granted" thing I referenced before. He has an awareness now, though it will fade in time. Thank heaven for him it will fade, yes?

Well. Must leave this post before it turns gloomy. I have a big fat brownie sitting here doing its best to make me smile. Yes. It is succeeding.



I got to come home early today. The house is empty and still. I was checking my e-mail when I realized the sun was coming in the window and hitting the screen of my laptop. I turned my head to see the position of the sun and caught my breath. The sun is making the clouds glow with a silver light; the trees are dark gray, almost like steel -- it's very ethereal. What a beautiful gift.

I was going to write about my thumb and about one of the threads on PLM. I'd rather look out the window.


Need a tissue

It hit without warning. Like a punch in the stomach.

I was cleaning out my gym bag and came upon a couple of feminine items I no longer need. I keep some in the event someone else might need them, so I was putting them away when I remembered the time a few years ago during a long run in Richmond. Lynne and I were training for the Richmond Marathon. We were in a residential area near the river and I realized I was "unprepared." Fortunately we met a woman who was doing some yard work and who happened to be able to help me out. We thanked her and off we went, still having many miles to go.

This memory flashed in my mind so quickly, and with it the recollection of how incredible that run was. I won't have that again. My favorite running buddy and friend, my favorite activity, my favorite part of that marathon course. It made me cry.

I'll get over it. There are new favorite things to do, new happy memories to create. I just have to stop crying first.

After the breakup

This morning I did my first solo run since I broke up with the team. I drove over to Pratt Park, having decided to do three or four laps on the relatively flat course that encircles the soccer fields. Each lap is 1.1 miles around.

It was cold -- about 28° -- so I wore long pants and two long-sleeved technicals. The iPod was all set with an episode of This American Life. I started out awkwardly. It was like I didn't know how to run. I thought I was keeping a conservative pace, but it felt like I was out of breath almost immediately. I stopped, coughed, started again. Same thing -- I became winded within seconds. Panicky thoughts ran through my head, was something happening? Was my breathing changing? Was I no longer able to run? If that was the case, then I would walk, thinking it was better than nothing. I walked for a few minutes. My breathing became regular, I felt calmer. I gave it another shot and started a slow, easy "wog” (which is the word I use to describe my running -- sort of a cross between walk and jog). This time I had better success. With the exception of walking the part of the course that has a bit of a rise, I did four solid laps.

So, that's that. I made it out the door without having anyone to meet, I came home without having an after run refreshment. I suspect I will catch up on a lot of podcasts this way. Not a bad way to spend a Saturday morning, all things considered.

Hand update: the nails on my right hand are growing beautifully. I guess this is to make up for the fact that I cannot even come close to making a fist. I can curl my fingers about halfway but there is no way in hell my fingertips ever make contact with the palm of my hand. I don't think the right hand has atrophied anymore, mostly because I don't think there's any muscle left. It is so surreal.

The left-hand is still capable of making a fist. The fingers are definitely separating and I do notice some swelling. The atrophy is more noticeable between my thumb and first finger, but my thumb muscle still has much of its bulk.

On a functionality scale, one being the worst and 10 being the best, I would say the right-hand is now about a two, and the left-hand is a 9.5.

And finally, there was another death announcement on PLM today. I've stopped reading them. I don't mean any disrespect, but I can't look. I used to read the Washington Post obituaries every day, but I was detached and simply curious. The death announcements on PLM are all about people who have the same disease -- my stupid disease. I am not anywhere close to dying and I don't want to read about those who have died. Maybe later, but not now.

Terps play in half an hour. Not a bad way to spend a Saturday afternoon.



I love and miss you, Mom. Fourteen years--how is that possible?


Ultra random ruminating

I don't know why, but I procrastinate every time it's time to take my meds. It takes two seconds and is painless. Why oh why do I always delay?

I still and will always hate when my arms twitch. Remembering that when they stop twitching it's bad doesn't make me like it any better.

When I use my voice recognition software and want to sign my name, the software always writes "Death."

I was starving at lunchtime today and couldn't decide if I should get a Wreck . I was so tempted. At least I didn't consider these. (Check out the whole site. Ugh.)

Somewhere deep inside me I don't believe I have ALS. Until I reach for something or try to put on socks.

I hate the "creepy crawly" burning feeling I get in my back near my neck and spine. It's gotten so bad, and the only relief comes from C Claire applying a strong, pointy, determined elbow to it several times an evening.

All those times in my life I wished I was dead, I take it back.


We had a visitor in the office today. While he was waiting for Melinda, he and I had a very nice chat. Somehow the conversation turned to being outdoors, running, walking, being smoke-free. The visitor commented on my very healthy lifestyle -- I smiled, and thought about the irony.



It's late, almost 11PM. I was flipping channels to see what might be on. One of my absolute favorite movies, Enchanted April, is on TCM. The book, by Elizabeth von Arnim, is even more delightful.

Everyone deserves an enchanted April...

I'll stay awake as long as I can.


Links, links, and more links

A recent topic on the PLM website:

Bidet toilet seats, which includes discussion about Toilevators. I'm thinking the TOTO Washlet looks pretty nifty.

Fun, fun, fun.

I want to quickly recount some thoughts I had today as I was walking to the lab, to the bank, and to Super Pollo. First of all, it was in the high 40s or low 50s, mostly sunny and beautiful for a walk. Do you recall my post about watching people at the clinic; how I watched them use their hands? Today, while I was walking, I was aware of every step. I felt my legs moving, I felt my feet on the pavement, it was like I was walking for the first time. I promised myself right then I would not take walking for granted.

That's all. Nothing earth shattering. But it left an impression.



Sunday night. The Wizards won in overtime, the Terps are ahead at the half. So far, so good.

There was a 4 mile race this morning. Lynne and several of my other friends were running, so I went to support and to provide Lynne with a much-needed refreshment afterward. It was strange not running. At the last race -- the half marathon -- I didn't race, but I still ran while the others were gone. Today I saw everyone start, I saw them just before the 1 mile mark, and I saw them as they climbed the hill from hell on their way to the finish. Between the 1 mile mark and the finish, I walked to my car, took my meds, and just sat for a minute. It was a new experience, that's for sure.

Despite the difficult course, Lynne broke 34 minutes. She is a very strong runner. That's why I made the decision and announcement yesterday that I wouldn't be running with the team anymore -- at least not on Saturdays. I appreciate that Lynne runs back for me, but she's not getting the benefit of a good, solid run with people who will push her. For a time I thought it might work, but the slower I get the more difficult it is. I'm being selfish to stay with this group. This is just one more thing I'm giving away.

I've mentioned before how difficult it is to open my mail. Today I caught up on some mail that had been piling up, and even now, several hours after I finished, my hands and arms are tired. I'm going to have to delegate letter opening in the future.

I hate ALS. There better be a good reason for this.

Blah blah blah. All things considered, life is fabulous. After the race today, I looked up in the sky and saw the clouds and blue and thought how wonderful it would be to be up in the air, soaring, looking down at the ground from up above -- how exhilarating, how liberating, how wonderful. There are so many thing to be grateful for, I don't have any right to complain.

Sweet dreams and all my love.


Deux choses

My diligence is being rewarded. Each night when I go to bed and each morning before I get out of bed I spend time doing my homework. This involves using gravity to stretch my arm up, and using gravity and my lower back to stretch my arm down. It's quite painful at first, but after about 10 minutes or so it's tolerable.

When I went to PT today Mike commented that he'd not been able to stretch my shoulder so well in a long time. I can't tell you how pleased I was to hear this.

So that was the first thing. Thing number two: when I got off the highway and was almost home, I decided to get some gas as I was close to empty. The station near my home is too expensive but is very convenient if you only need a couple of gallons. So I pulled in, but there were no other cars. The employee inside was an older woman who hasn't much more strength than I. Since I require a strong arm/hand to open my gas cap, I decided to wait until someone pulled in who could help me. Fortunately I didn't have to wait long. A couple of guys on their way from New York to Florida pulled in and gave me some assistance. Since I only got a couple of gallons it wasn't too terrible an inconvenience to them.

I'm yawning like a mad fool so it's time to get ready for bed. And homework.


A friend sent me this link and suggested I take up this activity now that I've stopped marathoning. I would do it in a heartbeat.



Earlier this evening I was going through some papers and found my finisher's certificate for New York. My official finish time was 5:45:32, a 13:11 minute pace. Of 38,096 finishers, I was number 35,245; of 12,880 women, I was number 11,322; and of 1028 women in my age group, I was number 833. My age group for this race was the 50-54 bracket. It was the first -- and only -- time I raced in this age group.

It was also the 50th anniversary of the New York Road Runners. I laughed to think I am the same age as this club.

It's a pretty certificate but I'm going to pitch it. I think I still have the certificate from my first marathon, but I don't see the point in keeping the certificate from my last.


Advocacy Day

Today was mini-advocacy day. I got to work early, ran through a few things, and headed out. Typical rush-hour congestion on the Metro, but I got a seat after people got off at Rosslyn. I took the train to Metro Center and, rather than transfer, I walked the extra block. It was cold with a light snow -- perfect weather, and I wished I was running.

I found my way to The Renaissance Hotel and meeting room 15 and, since I didn't know anybody, found an empty seat at one of the tables. It didn't take long for me to meet other people -- and other people with ALS -- and we slipped into the sort of conversations typical in this community: when were your first symptoms, when were you diagnosed, what was your onset, etc. I also met people who had family members who had ALS, including some of the association staff members. Two of the women from my chapter had lost a parent to the disease; their involvement with the Association did not cease after their parents' death. I think that is commendable.

I met one man whose son was diagnosed at the age of 18. The young man is now 27. His parents have cared for him his whole life, and he is now (according to his father) close to locked-in syndrome -- where nothing except the eyes work. Listening to this man speak, I was struck with the thought that he would have given anything to have borne this burden in place of his son. My heart ached with the thought of watching a child suffer with this disease. I was reminded of something I said in the early days of my diagnosis, that if my having this illness meant that someone I love did not, it was worth it. My heart goes out to this man and his wife as they care for their son. It must break their hearts every day.

The meetings on the Hill were interesting. We met with staff members in the offices of Congressman Moran and Congressman Wolfe, and made an unscheduled visit to Congressman Connolly's office. On the Senate side we split up, one group going to Senator Webb's and the other going to Senator Warner's. I was with the Warner group. All the staff members were kind and seemed interested, but you could also tell they were thinking about their next meeting and all they had to do. It was nice that they met with us at all.

All of a sudden, I am so tired I can hardly keep my eyes open. Sweet dreams.



Muscle Rigidity

Continuous involuntary sustained muscle contraction which is often a manifestation of BASAL GANGLIA DISEASES. When an affected muscle is passively stretched, the degree of resistance remains constant regardless of the rate at which the muscle is stretched. This feature helps to distinguish rigidity from MUSCLE SPASTICITY. (From Adams et al., Principles of Neurology, 6th ed, p73)


Muscle rigidity is a state of continuous firm, tense muscles with marked resistance to passive movement.

Alternative Names

Muscular rigidity, rigidity, rigor.


Muscle rigidity is an alteration of muscle tone in which the muscles are in an involuntary state of continual tension. Muscle rigidity can be a manifestation of neurological damage (basal ganglia diseases) or a side effect of certain medications. Muscle rigidity is the continuous, tonic contraction of the skeletal muscles, often more marked in the flexor muscles than extensors.

During conversation with Mike today, I discovered I had used the wrong term to describe what's going on with my shoulder. It is in fact rigidity, not spasticity. I experience spasticity in my forearms and hands. My apologies for the error.

Diligent adherence to my homework schedule resulted in an improved internal (bending my arm down), but the external (bending my arm up) still sucks. And no matter which way I move my arm, the idiot thing hurts like crazy.

Stupid, painful arm notwithstanding, I can still move it some. Pretty good record, don't you think?

Tomorrow is Hill visiting day. Don't have a clue as to the schedule, but it doesn't really matter. I'm there regardless.

Homework calls.


February 09 -- my blog is one year old

Necessity is the mother of invention.

I was home alone this morning, everyone having gone to Richmond last night for a concert. I encountered a difficulty when I tried to feed Lydia. The only food in the house was canned; the small cans with a pop top. My first two attempts were miserable failures, so I had to put on my thinking cap. Sliding a table knife under the pop top ring, I pried the ring up so that the can was just open. My right hand is unable to pull the top completely off, and unable to hold the can if I tried to use my left. So I took a long wooden spoon and slid it through the ring and, holding the can with my left hand, I pushed down on the spoon as with a lever, and off came the top. I was quite pleased with myself, and the kitty was happy to be fed.

I made a flank steak for dinner tonight and used part of it to make soft tacos. I was really pleased that I was able to cut the steak into thin, small slices all by myself. I had to use a really small knife, which I held in a very convoluted fashion -- but it worked.

After dinner, I discovered I am no longer able to scoop ice cream unless I let it sit and get soft. I like soft ice cream anyway, so no worries.

On a different subject: I did not run today. I had a bit of a headache (no doubt the result of last night's outing with the girls) and I was tired. But it was a beautiful day out so I determined I would walk while the others ran. Lynne was also feeling a little tired so she walked with me. We did a little over four -- possibly closer to five -- miles. The best part was her company. This last year I have missed her company during our runs. I have posted before that I run behind while the others run their pace, so I don't really run "with" them so much as behind them, and there is little, if any, deep conversation. So today's walk and talk was a gift.

It's now 8:20 PM and I'm going to get ready for bed. And do my homework. Sweet dreams.

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