THE ODDS (Debbie Does ALS)



I love olives. I can eat more than are good for me.

Happiness was delivered today in a package from Tar-jhay. Two pairs of cropped pants--one olive, one khaki--both with the Louise-friendly waistband. Sigh. My standards are so altered. But. They fit, and require little dexterity. I will positively BEAM while wearing them. Everyone will be blinded by my beaminess.

I discovered today that I must lean on my shoulder when I stretch my calves. Hands/arms don't do it anymore.

The on/off switch on the vacuum is too hard to push. Don't even bother asking why it took me this long to discover. No. Don't. I managed to make it work by holding the vacuum handle against my chest while I pushed the switch with a pen I held with both hands.

My teeth are an inferior third hand. But, inferior though they may be, I did succeed in using them to open the (not-so) easy open goat cheese.

I love Georgette Heyer. Introduced to her when I was 12 by Aunt Bette and Aunt Esther, I never tire of her witty, delightful, fluffy romances. I plan to take one on my trip and do some time traveling. The difficulty is: which one?

Speaking of books, this is the first one I read after my diagnosis. There is a passage within where the author talks about wishing she'd run more when she had the opportunity. I think of it often.

I think I've run on enough for one evening. Oh my, an inadvertent pun. Aren't I just the cleverest little blogger.

I ran

Just back from the locker room. I ran with Kendall today--I ran!! Yes, I also walked some. But I ran. Not far, maybe three miles, but it's the first outdoor midweek run I've done in AGES and it was fabulous. And delicious.

There were a couple times when my quads felt iffy, but I ignored it. I'm going to get out as often as I am able, and to hell with an iffy quad.

(Note to Kendall: thanks for taking your pace down and staying with me. You are such a dear.)

This is special, you know. I used to run 5-6 days per week, and now manage only 1-2. Adding a midweek run is huge. Huge, I say, huge! Haha, like I have become since I've stopped running so much.

I ran. Ahhhhhh.


Stuff in my head

There are so many things that have run through my head the last couple of days, I hope I do a fair job of recounting it all.

First of all: Saturday. Becky and John ran the Monument Avenue 10K. Last year Lynne and I ran it, too. Becky ran with me and we managed a solid 10 minute pace. This year she ran an 8.18 pace; John did a 6.16! They are machines. While Becky was running I decided to walk -- I followed the course up Monument Avenue, turned around at the second circle, and walked back to the finish. As I walked up the street, the first wave finishers were on their way home. I love watching runners near the finish -- they are so strong and so determined. The residents of Monument Avenue make a party on race day. I saw people drinking mimosas and coffee while eating a breakfast on their front stoop -- how wonderful. At the second circle I turned around. Now the runners and I were going in the same direction. As I walked, listening to my iPod, smiling at the breakfast eaters, feeling the energy of the runners, I became increasingly blissful in this space I occupied. I likened it to an individual's journey through life -- the people moving quickly by, those standing still, the occasional interruption when one gets in your way -- and the more I thought of it, the more blissful I became. It felt delicious.

This same deliciousness was with me Sunday morning, during my run. I forced myself to get up, no easy task these days when I'm feeling so lazy. The first moment of deliciousness came when I used my hooks to pull up my running socks. They haven't gone on so well in months. I don't know why I hadn't thought of this before. Anyway, I drove to the grocery store parking lot, got out, and began to walk. There was a light mist and it was cool, no -- it was cold. I walked for about five minutes or so, then began my slow trot. The deliciousness was building. It felt so good and the mist/light rain on my face and in my hair was a gift. I think I ran about 2-2 1/2 miles before I turned round. When I did turn around I could tell my legs were tired and my breathing was harder. I took down my already slow pace and slowly, determinedly made my way back. There are more hills on the return so I walked a bit more, but a hill is a hill and my legs worked to carry me up. Even in my fatigue, I was aware of feeling delicious, almost unbearably so. I can't tell you how many negative thoughts tried to intrude and penetrate. Now and then one would slip through and start to take shape in my mind. I wasn't having any of it; once I realized the negative thought was there, I booted it out. I finished my run feeling fabulous.

Today when I got to work my first stop was the mailroom. As expected, the weekend mail was abundant and was difficult for me to extract. As I was about to look for some help, a man walked into the mailroom. I'd never seen him before, but asked him if he would help me. He very kindly agreed. After he had extracted my mail, he started to go out -- he had had no reason to be in the mailroom. I think it's cool he showed up just at the right time -- someone or something sent him. We rode up the elevator together and had a pleasant chat. He was like a bright light, and when he got off the elevator I went and stood where he'd been so I could share in his bright light. It was such good energy.

Now for some other observations:
  • After Sunday's run I feel very sore and tired. I stretched for a long time yesterday and will again tonight.
  • I don't think I've mentioned this. But my face, particularly my mouth, has been twitching fairly consistently. As well, I have begun to notice that sometimes it is hard to say words, like my mouth can't form them properly. I mentioned this to Lynne, who said she had noticed a difference. Shit.
I need to remember that slow doesn't mean no. Like it or not, progression is inevitable. I broke my own rule tonight and looked down the road a little. I was thinking, wondering, what I would be, where I'd be, in July, September, even beyond. Worse than the progression will be the necessary changes that result from progression. I hope I'm strong enough to endure the more painful changes.

I will smile me a big fat delicious smile and find the strength. It'll be like running that 10K as fast as Becky and John did.



Every human being is the author of his own health or disease. (Buddha)
Is this so? Did I bring this on myself?

Can I change it?

The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly.

Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.
I like these.


You can see I came away from the meditation session just bubbling with Buddha-isms.

I have to confess I was a little sketchy at first. To be told to relax, close my eyes, and meditate when I have never meditated (at least not consciously) made me a little nervous. Add to it that we were supposed to do this for 30 minutes -- how the hell was I going to sit still for 30 minutes? Amazingly, I managed to relax and give in to it. When the 30 minutes was up, I was surprised at how quickly the time flew. I actually felt the energy in my body; my mind was full of blue; my breaths were minimal but sufficient. It really was a unique experience.

Jonathan, the session leader, has a soothing voice and a very gentle way about him. Much of what he imparted are conclusions I've reached on my own, particularly as it relates to managing challenges and existing in the world. I wouldn't say I am necessarily enlightened, but I feel that I have an awareness of where I am in this space I occupy.

The entire evening was time well spent. I don't know if I can manage every Thursday, because it's a very late night, but I'll go when I can.


The Glow

Today was one of those days I was so busy I didn't always remember Louise was there. I had a super satisfying ride into work (imagine!) and it carried me through the day, like a glow that filled me and kept my mind right. Little irritants were dismissed and the fabulosity that was the day stayed front and center.

I ordered my fancy-schmancy pens AND a highlighter (one never knows when one will require a two-pronged highlighter, but I'm ready). They've shipped, so I should be getting them soon.

Also shipped: a couple of pairs of "specialty" (translated "pregger") pants, one in khaki and one in olive. I hope they are suitable. I've been eagerly awaiting their arrival to pump up my current wardrobe. How many pairs of black stretchy pants can one own, after all?

I'm going to a meditationy and awareness sort of thing tomorrow night. I heard of it from Marvelous Mike and I'm curious, so off I will go. There will doubtless be a hint of Eastern Philosophy. Tomorrow night's topic is "Engaging in Social Change" but the one I'm most curious about, which is next month, is about illness and dying. I think it would be better to say illness and LIVING. It should be interesting.

Still glowing. What a great day.



I dug deep, and look what I found

I want one of these:

There are five classy colors, but sadly no leopard. I will endeavor to live without spots. It will be enough to dazzle with my fancy fingerwork.

Retail therapy. Always good.

...Violent ends

I looked too far forward.

I spoke to Ellie today and told her I wanted to pursue the ceftriaxone study, provided I am eligible. We had some conversation about the IV catheter and she assured me I should, while I still have the dexterity and strength, be able to self administer.

Who ever thought I would have such a conversation.

Diggin' deep.


The other end of the spectrum (updated)

She was 62.
First symptoms in May 2007.
Arm onset.
Diagnosed August 2008.
She died yesterday.

In her words, "there is no ALS in heaven."

Update: as it happens, she fell in her room and was not discovered for several hours, very late at night, and was gone when her family found her. Makes this even more tragic.


Smile, though your heart is...

I've just thought of something. In keeping with my earlier determination to always smile no matter what, I'm going to do just that down at the race. Hopefully it will make the tough part less tough and, in so doing, will make me tougher.

I decree today a Louise-free day.


I was at clinic. It was a bare-bones staff -- only nurses -- and the rooms didn't even have tables. It was like they were preparing to relocate. I walked around a U-shaped turn and saw a man, dressed in a suit, sitting on the floor. He was supposed to help me, but I wasn't sure how. We had a nice conversation and I excused myself, saying I had to go back to my room. I was so tired when I got back to my room, I wanted to rest. As there was no table I knelt on the floor and fell asleep.

The next thing I know, I'm outside riding my bike. I'm able to ride my bike without any problem and I'm enjoying the beautiful weather and all the scenery. I rode through a new shopping center and saw a restaurant I knew Lynne would be happy to see. I kept riding and finally came out on Lafayette Blvd., down near the Spotsylvania Courthouse. I was delighted because this meant it would be easier for Lynne and I to connect for a run. Tons of people were out, many of them members of the running community. I weaved my bike in and out and then discovered there was something going on with the right handlebar -- it was loose and was not connected properly. I got off the bike and flagged down a man and asked him to help. He was somewhat offputting but did agree. He reminded me of my old podiatrist, Dr. Pribut. As this man was loading my bike, I was on a clinic table. What was odd was the man was also changing clothes. He finally finished and drove away with my bike.

I found myself in a building much like a gym or pool locker room -- all cinderblock and toilets. I saw many of my friends who were there to attend a swim meet. I knew Lynne would be there to watch her daughter Stephanie. But then everyone was gone. My clothes were sweaty from my bike ride so I thought I should change. I went into a stall but it was so nasty I had to leave before I got sick. I found a clean one and took off my sweaty clothes. But I had nothing else to wear. I began to cry because I had no clean clothes, no bike, no phone, nothing. All I had was this strange cylindrical device that would only sporadically pick up radio signals. Crying, I put back on my sweaty clothes.

Then Melinda was there, with a chocolate chip cookie casserole. The edges of the casserole would not stay down, but Lynne's daughter Stephanie was able to fix three of the four edges. I was lamenting the loss of my bike when the man who had taken it drove by. He was driving a Porsche that was painted orange and white. He called to me to tell me that the paint had been chipped. I told him I didn't care about chipped paint, I just want the handlebar fixed. He said it wasn't the bike's paint, it was the car's and it happened while he was loading the bike so I had to pay. I thought to myself the only thing I could do at that moment was give him a business card, so he'd know I was legitimate.

I was also beginning to panic because I was not able to contact my clinic to tell them where I was. I was so upset about the car and the clinic, I could feel the anxiety even in my sleep.

Then I woke up. The dream was so fresh in my mind and I was so relieved I didn't have to deal with any of it. I had to put this all down before I forgot.

Time for a wog.

I had a great run. I got out later than I had hoped, but it didn't matter. I knew if I was home by 10:20 AM I would have time to clean up before my hair appointment. I ran for what I thought was about 30 minutes, then turned around and came back. When I got in the car and saw that I'd been out for almost 90 minutes, I was shocked. I haven't worn a watch in a long time but maybe I need to start. Clearly I am running slower than I thought.

While I was running I kept chiding myself for being tired. I told myself if I didn't pick it up I'd never be in marathon shape again. I crack myself up!

Having run longer than I anticipated, I had to rush right over to the salon. I hope my poor stylist wasn't too offended by my rankness.

So, back to the dream. What I most remember is the feeling of elation I had while riding the bike. I was strong, I could feel the air, I could feel the sun, I was so happy. The last time I rode a bike was this time last year. I had run the shamrock half marathon (as a bandit, but so what) and then hopped on my bike to find Lynne. I ended up riding approximately 21 miles, after which my right hand and arm were so sore I decided it was better to give up biking.

I must go pack. Overnight in Virginia Beach for the marathon. Lots of my friends are racing. This might be tough.



WTF? Sort of looks like a badly made ant headband, I think. Odd looking little gadget, but the zipper pull (the side with the hook) allowed me to wear jeans today--the first time in ages.

I look rather suspect when I head to the bathroom with my enhanced key and one of these contraptions in my hands. I'm sure people wonder what the hell I'm doing!

Anyway, my jeans were like an old friend. This zipper pull is like Rilutek for regular clothes wearing.

Another pause in the day

I found this last night:

Buddhism speaks of the pain and ‘ the second arrow.’ The first arrow is pain itself. That is inevitable. The second arrow is how we react to it. When we add aversion, craving, resistance, worry and obsessive thinking, we add immeasurably to our experience.

The writer said he had to keep reminding himself that the second arrow is optional.

There are a lot of different arrows that cause a lot of different pain, and this applies to them all.



MD: 84
CA: 71


PLM Post

From today. What caught my eye was the title "Arm Weakness." I'm so lucky I'm not here.

Hi everyone, my arms are getting weaker and weaker, they seem to be ok from the elbow down (if that makes sense) but I'm having real trouble when I'm trying to lift a cup or spoon to my mouth. It's pretty funny if I'm trying to eat peas, by the time I get my arm up my hand is shaking so much all the peas have fell off. Does anyone know of something to help support my arms or tips on pea retention?



N:Some mashed potatoes or other textured food that might help hold your peas on the fork ~ I too have had to invest in Vanish strain remover for my tops getting covered in food dropped from a wobbly fork/spoon. I also have melamine dishes and plates, light to lift or move and the pattern I got has a raised edge to it so gives something to push the food against to get it on the fork.

XXX has posted about the Neater arm support, great device and here on alternatives How do you eat when you lose arm function.

I find for now using certain types of cutlery that are easier both to hold on to and to hold food ~ i often will use a 'Spork'

Your OT should be able to help you get these things, although I have found things myself online for a reasonable price.

Hope this helps..



I eat my peas with honey./I've done it all my life./It makes the peas taste funny,/but it keeps them on my knife.

Seriously, as XXX is mentioned, there are a number of assistive devices to help us eat. I have had trouble with my arms for some time. I always use a soup spoon to eat with, because I cannot get things to stay on a fork. I have to have someone cut my food into bite-size pieces. Recently, my OT found an arm support that clamps onto the edge of the table and supports my forearm while I am eating. I don't know the name of it, nor do I have a picture, but I will try to research it for you. Check with your OT and the ALSA loan closet near you. They may be able to help.


Hey N, I have the same problem eating peas, but usually I eat with a fork
so I recommend a table spoon if you're also using a fork. Try to keep
your elbows/arms relaxed on the table, (have enough space) and lower your
head more to reach the spoon. Avoid stress and cold, in my case they make
my hands and arms weaker.
A tip, if you smash the peas a little bit while coocking them, they will be
more stable in your plate and on the fork.

A pause in the day

Sensing the approach of the valley, glad I realize it makes me appreciate the peak. Smiling hard, busy with work, focusing on now and what is.

The Madness has begun! Love this time of year. My current regret: not hitting "save" when I did my brackets. By the time I realized my error, it was too late.

Back to work.



Still incredibly happy, making the smiling incredibly easy.

Sounds like a Twitter or a Facebook status update, doesn't it? I must confess to being a user of both. I started using Twitter some time back just to check it out; I was influenced by Matt (who also encouraged Facebook). My initial feelings about Twitter were lukewarm, but the last couple of weeks I've visited more. The man who writes Paris 2e (see the link to the right) "tweets" and his updates are very entertaining. Amalah tweets, too, and she is another favorite.

ANYWAY, Twitter and Facebook aside, this post's opening sentence says it all. Well, almost. I am also tired, a good, solid, wonderful day sort of tired. I am looking forward to feeling my pillow against my cheek and the cool air coming in through the window. MMmmmmm.

Tweet dreams.

Happy, happy, happy

I am very VERY happy today. Knowing that "...these violent delights have violent ends..." I am preparing. How? I am determined to show only a smiling face, at all times, no matter what.

It makes sense, doesn't it, to face every day, every minute with an upturned face and optimism? That is my intent, now and all the rest of my life.


Luck o' the ?Irish?

I don't know how it happened, but somehow I got lucky. I have the best friends in the world. They love to run, yes, so they are putting on event for the sport they love. But there is work involved, too, which intrudes into their personal and professional worlds. I watched their faces tonight as they planned the June 20 event, and I saw kindness and caring.

How lucky am I to have these people in my life.


Hopefully no number three

Twice tonight as I was coming home I was almost hit. The first near miss occurred on 10th Street just before Wilson Blvd. -- a car in the right lane decided it wanted to be in the left lane but forgot to see if there was room. There was not, I was there. Fortunately I had had my eye on him and anticipated his foolishness. I laid on the horn as well as my brakes. He missed hitting me by mere inches.

The second occurrence took place in the HOV. Traffic was merging on from the right so I was in the left lane. Two state policeman entered the HOV and, within minutes, had their lights flashing. The car in the right lane tried to move out of their way by going into the left lane. Just like before, I hit the horn and the brakes and just narrowly avoided being hit. I was not surprised when one of the state troopers pulled in behind this guy -- the miscreant was in the HOV illegally. Both state troopers stayed on his butt until he finally pulled over.

Needless to say the rest of my ride home was done cautiously -- things happen in threes, right?

Spring break update: Cecilia and I will be joined by my niece, who is studying abroad this semester. I'm very excited to see her as it has been a number of years.

Time to make some "pan-crepes.” Delicious!

Will Power

I said NO to the oh-so-tempting brownie at the deli. I looked, I considered, I reached, I withdrew. I am so strong!

I wonder what I will say yes to later.


The weekend

Cecilia and I were having dinner on Friday night before going to a Wizards game. Our conversation was comfortable if unexceptional, when she suddenly stated that it had just hit her that I have an incurable disease. Her voice changed and she had tears in her eyes. She told me she loved me.

Now, this is not the first time she's displayed an elevated level of upset, but this is the first time in a long time and it was very low key compared to what came before. I looked at her and reminded her that I am very lucky to be very slow, that we should not look too far ahead but should enjoy where we are now. It must have stayed in her mind, however, for her to have posted what she did on Facebook.

We have our wonderful spring break trip ahead of us, and we are both looking forward to that.

Saturday I met the team, despite my protestations. Lynne refuses to let me be separate and I don't have the energy to argue. I did send them on their way without me, as I had decided to accept the fact that walking was best. I hadn't considered that I wouldn't be able to zip up my jacket, which I never would have worn to run, and I had to knock on the door of the still-closed Hyperion to ask for help. This, like asking for help with the gas cap, slightly unnerves me because people look at me questioningly since I don't appear to have an issue. But the young man was kind and helped with a smile, and away I went. I walked, and thought about something Cecilia said on our drive home. She called me "runner mom," and I laughed and said I wasn't much of a runner anymore. She told me I'd always be runner mom. Remembering this, I decided to give it a shot. And I ran, slowly, easily, wonderfully. As I said later to a friend, I go back and forth so much with this, but the run yesterday morning was restorative and reassuring. I guess I am still runner mom.

Hoops: Even though Maryland didn't beat Duke, their wins over NC State and Wake earned them a spot in the NCAA tournament. Nice!


Worthy of sharing

I heard this story today (a slightly altered version, but essentially the same). It gave me shivers.
A Heavy Load

Two traveling monks reached a town where there was a young woman waiting to step out of her sedan chair. The rains had made deep puddles and she couldn’t step across without spoiling her silken robes. She stood there, looking very cross and impatient. She was scolding her attendants. They had nowhere to place the packages they held for her, so they couldn’t help her across the puddle.

The younger monk noticed the woman, said nothing, and walked by. The older monk quickly picked her up and put her on his back, transported her across the water, and put her down on the other side. She didn’t thank the older monk, she just shoved him out of the way and departed.

As they continued on their way, the young monk was brooding and preoccupied. After several hours, unable to hold his silence, he spoke out. “That woman back there was very selfish and rude, but you picked her up on your back and carried her! Then she didn’t even thank you!”

“I set the woman down hours ago,” the older monk replied. “Why are you still carrying her?”



Almost forgot. Thank you, thank you, thank you to the very kind, helpful, compassionate young man who helped me with my gas cap tonight. Not only did you take the cap off, you asked if I'd be able to put it back on and, when I said no, you hurried back after you had filled your own tank.

I don't know your name but I know you have a good heart. All my gratitude.


So. Did you read all that stuff about ceftriaxone? I won't even pretend to understand the science, all I know is that my neurologist seems to think it has enough clinical data supporting it that she is not averse to the study or my inclusion in it. Provided, however, I prove I am eligible. How will I do that? Well, the first step is to undergo another dreadful EMG. As I said before I only present two of four indicators, I need to present three. Another EMG will be done to see if I have any lower motor neuron issues. If I don't, I will not be part of the study. Which is fine because it means I'm not sick enough.

Clinic was fabulous. My FRS is 42, my FVC is 90%, and the "squeeze test" indicated no change in my left hand and the expected additional weakening in the right. Once again, I dazzled my speech therapist with my fancy facework, she was impressed with my water drinking ability. My lovely OT and PT ladies were pleased to see that I was virtually unchanged from December. The dietitian was pleased with my weight (even though I am not, but whatever). I have decided to try to work on accepting this newer, expanded version of myself. I will refer to it as "fattitude" and I will use it to battle stupid Louise. So there.

Because I am a slowpoke I don't need to go back for four months. The usual return is three, so I am gratified. All this is dependent, however, on whether or not I am included in the study.

Fun, fun, fun. If I am included in the study, it will present a whole new set of challenges. It will require an IV catheter in my neck which will exit from my chest, as well as twice-daily injections of what may or may not be the ceftriaxone. As I lack both the stomach (despite the fattitude) and the dexterity to self-inject, this will be a bit of a hurdle. I will deal with it and make it work, but I'm not going to worry about it right now.

Right now I am going to finish my flying dog classic pale ale. Cheers.


Had a fab clinic today. Will update later, after I get home. As we all know, STILL SLOW.

One thing I want to mention, though, is that I MIGHT be participating in a study IF I show evidence of a third indicator (currently only evidence two, which renders me ineligible). Brief info below:

Screening Effort Identifies Ceftriaxone as Potential ALS Therapeutic

[QUICK SUMMARY:A consortium of researchers has found that Ceftriaxone, a drug that alters glutamate, has been found to prolong survival in animal models of ALS.]

Researchers have published results in the January issue of the journal Nature, on a potential new treatment route for patients with amyotrophic lateral sclerosis (ALS), using an already marketed drug. Unexpectedly, the compound alters the levels of a protein that regulates the nerve cell messenger, glutamate. Now the drug, called ceftriaxone, is about to enter clinical testing in ALS.

“We now have a candidate going to clinical trials, due to this unique effort that brought drug screening into the academic arena,” commented ALSA Science Director Lucie Bruijn, Ph.D., who is an author on the paper.

Originally designed to target microbial metabolism, many of the beta lactam class of compounds can also affect glutamate transporter protein expression. Glutamate is a critical messenger for the central nervous system. It is kept at proper concentrations by means of a transporter molecule, called EAAT2, which collects any excess. Scientists funded through a consortium effort discovered that several beta lactams can affect the readout of the gene coding for the EAAT2 transporter and thereby influence levels of glutamate.

The revelation about this action of beta lactam drugs came about through a concerted effort to screen existing compounds for potential in neurodegenerative diseases. “These studies document a new property of a very common antibiotic,” write the researchers, “and demonstrate that beta lactams can activate the gene for a neurotransmitter transporter.”

The drug screening effort was initiated as a joint project of The ALS Association (ALSA), the National Institute of Neurological Disorders and Stroke (NINDS), the Hereditary Disease Foundation (HDF), and the Huntington's Disease Society of America (HDSA). Investigators from 26 laboratories took part in the initial 6-month, $1.3 million project, which tested 1,040 compounds using 29 different assays, or tests

Drug companies frequently conduct rapid drug-screening programs that examine many thousands of compounds at a time. The effort that revealed the glutamate action of beta lactams is noteworthy in that it was publicly funded, involved primarily academic researchers, and targeted drugs already approved by the FDA.

Already marketed drugs have significant advantages compared to newly identified compounds because they have undergone years of use in humans. This means that they could be immediately available for testing in patients if the data from the drug screen look promising. A clinical trial in ALS of ceftriaxone is slated to start in the spring.

Drugs that show statistically significant activity in multiple assays are especially promising candidates for tests in animal models. Ceftriaxone was one of these compounds. Led by investigator Jeffrey Rothstein, M.D., Ph.D., at Johns Hopkins, the team found that ceftriaxone increased levels of the glutamate transporter protein, at concentrations known to reach the brain.

Spinal cord tissue taken from nine day old rats, provided the initial screen. The investigators confirmed the action in living rats and went on to show that the drugs work to turn on the gene that codes for the transporter protein. Ceftriaxone was able to raise the amount of transporter protein in the brains of rats for three months, the maximum duration of administration tested.

The team then turned to various test tube models of neural injury and found the drugs effective in preventing cell death. Finally, they studied the drugs in the SOD1 mutant mouse model of ALS, in experiments co-funded by ALSA, NINDS, the Packard center, and Project A.L.S. (The animal testing was performed at PsychoGenics Ceftriaxone delayed loss of muscle strength and body weight when treatment began at disease onset, 12 weeks of age in the mice. Earlier treatment did not add to the effect. Survival was prolonged similarly, for about ten days, by treatment that began at either 12 weeks or at six weeks of age.

Mice who were treated beginning at 70 days showed less glial scarring, and had more motor neurons surviving, after two weeks of treatment, compared to untreated mutant SOD1 mice, the researchers also found.

Early treatment would not necessarily produce longer survival, Rothstein and colleagues wrote, as the loss of transporter is not evident until around 90 days in these animals.

Rothstein and collaborators have organized a trial of ceftriaxone in ALS, funded by the National Institutes of Health. Details of the trial, including clinical sites and start dates, will be available by spring 2005.


The key

Didn't the engineer go over and above? IT WORKS LIKE A CHARM!!

PLM post that made me queasy

I've got some hard build up/deposit inside my peg tube. We've tried coke several times, and my husband has even scraped it, and it will not come off. Has anyone experienced this? Any suggestions on how to disolve it. Thanks.


Hi ,

Last year we had a similar problem with XXXX's peg tube. We tried the Coke too and had some results but the tube was still slow.

We then washed out one of the hanging bottles that XXX's food comes in and placed 300 to 400 ml of cranberry juice in it. The cranberry juice is the type with no sugar, just straight cranberry juice that you can probably get at the helalth food store, we used Lakewood brand pure cranberry juice. From the information that I could find, the cranbery juice had a lower Ph than the coke and would probably be more active in cleaning the tube. We set the feeding pump to deliver 75 to 100 ml per hour and let it run with the cranberry juice all afternoon. This slow prolonged application seemed to work. Every few hours we would give the tube a good forceful squirt of warm water to help flush anything that the cranberry juice might have loostened up along with rolling the tube between our fingers every now and then to help loosten the caked on material. We did this once per week for several weeks until the tube was changed on its normal schedule.

We now flush the new tube with a bit of cranberry juice every day. 4 oz caraberry juice plus 4 oz water split up into (4) 2 oz squirts throughout the day. This seems to do the trick. The daily cranberry juice helps with UTinfection control also.

Hope this is of some help.

A challenge.

I am having trouble with the key to the ladies' restroom. This might be problematic. It WAS problematic yesterday.

Putting a key adapter on it won't help because I still won't be able to turn it, no matter what size. I need to create another lever-y type thing, but the key design and proximity to the wall may limit what I can do to effect this adaptation.

Any thoughts?

Update: Our building engineer is ON IT! I feel a big fat smile forming!

More on IPLEX

FDA, Insmed, Inc. Announce
Special Program for IPLEX

This morning, the U.S. Food & Drug Administration granted approval for a limited number of people with ALS in the United States to receive IPLEX, a drug that combines insulin-like growth factor (IGF-1) and IGF binding protein 3. IPLEX, which has not been approved for use in ALS, is manufactured by Richmond, VA-based Insmed, Inc. The new program is the result of an agreement between the FDA and Insmed.

The ALS Association hopes that the FDA-approved program will develop informative data about IPLEX that can lead to a better understanding of its efficacy and safety and enable both patients and clinicians to make more informed decisions about the use of IPLEX and its potential as a therapy for ALS. To this end, The Association encourages the FDA and Insmed to establish partnerships with the ALS community to ensure that the program yields meaningful results that will guide the next steps in determining whether IPLEX is effective and safe for ALS.

IPLEX originally was approved in the United States as a treatment for children with growth failure, but it is now discontinued and no longer available for this population. The drug is being tested in a now-closed study involving myotonic muscular dystrophy (MMD). Insmed is supplying IPLEX to the Italian government under an "expanded access program," but it continues to be an untested and unproven treatment for ALS in the United States.

Based on existing clinical and scientific evidence, The ALS Association cannot encourage or recommend the off-label use of this medication without substantive evidence of its efficacy through a rigorous clinical trial. The ALS Association is continuing to monitor and assess information about IPLEX as it becomes available to provide the public with the most up-to-date reports about its potential for ALS.
Additional information on today's announcement is available here:
For additional information from The ALS Association, please contact our Patient Services Department at or toll-free at 1-800-782-4747.

More details to follow...

Run for Debbie 10K
Sat, Jun 20, 2009 at 7:30 pm - Colonial Beach, VA

10K road race through south east road of Colonial Beach, Virginia. Fund Raiser for ALS Association. Post race BBQ and beer!


Hi Beautiful

Beautiful weather.
Beautiful day.
Beautiful life.

There was a support group meeting today. All the regulars were there. A young woman was joining us for the first time; her mother had been diagnosed with bulbar onset only a week ago. In the room there were three wheelchairs, two other bulbar, and me. Not for the first time was I struck with how different I am from my friends. I am 17 months post diagnosis. Average life span after diagnosis is 2-5 years. I am so not average. I am so grateful.

Beautiful, beautiful, beautiful.

I have hit a catch 22. I run less because it is harder to run; it is harder to run because I run less. I did not run last weekend (notice there was no post about this). I ran for an hour yesterday, and ran only about 1 mile today. The plantar fasciitis in my left foot is very much aggravated when I run but not so much when I walk. Walking is looking more and more appealing. And in weather like this, I could walk forever.

Making lemonade, and lemonade is beautiful.


Whose ALS is "worse" continued

Reference the previous post. Here is one response, from one of my favorite posters who, interestingly and sadly, was dx'd with arm onset near the time of my dx, but who already has a yellow head, ORANGE arms AND LEGS, and a green trunk:

From the moment of diagnosis forward, every PAL experiences profound and grievous losses. Neverthess, the disease has no direct effect on our capacity to love and to be loved, our ability to project love and kindness into the world, or our capacity to cultivate within ourselves an abiding sense of joy and inner peace.

You can see why he is a favorite.


The worst case of ALS was in pALS that have already passed away. As long as we are alive, it's not even close.

Whose ALS is "worse"

Saw this on PLM today. I've sometimes thought I would trade my legs. We aren't given the option, though. We have it the way we have it, for better or worse.

I read a comment in another thread that (paraphrasing) [there are many PALS who are "worse" off than a PALS who can still at least stand]. I am really, really bothered by the mentality that someone with ALS who can still stand or walk is automatically "better off" than someone who can't. Obviously, someone who is "locked in" is worse off than someone who is not. They can't even communicate their needs. But who is to say what "disability" is harder on a given person or their family? To some degree, I understand this mindset in the general public. Most people can more readily imagine the changes that would come in their life if they couldn't walk....much more so than they can imagine what it would be like to loose their speech (while still remaining cognitively intact). But I'm disappointed that that kind of comparison is being done here on PLM.

I, for one, would happily trade my legs to have my voice and breathing back. For another PALS, who worked with his hands, loosing arm funciton (while at least having the ability to speak clearly and to walk) would feel like a major loss. Unfortunately, trading with another PALS isn't an option and unfortunately, all ALS eventually ends the same way that my bulbar ALS will. While the FRS measures progression, it is less well-suited to measure life-impact.

Just hoping to raise some awareness of the kind of subtle prejudices that we can harbor even among ourselves.


I know. But I don't really care.

150. And this after stating that I felt stiffer and in a bit more pain.

Mike also said my radicular (??) function was good, relatively unchanged, about a 32-26. Oh no! Another number! I warned him about telling me too much. Too damn competitive, and I'm the competition.

I don't care, I don't care, I don't care....


Random acts

I met a very kind young woman this evening.

On the ride home tonight, I was pondering what to make for dinner. Since C Claire seemed to enjoy the "pan-crepes" I made last week, I thought I might make them again. Last week I had used Camembert cheese but decided to use brie tonight; I also decided raspberry preserves would be nice complement.

All my items (all two of them) in hand, I went to the register. The young woman behind the counter -- Alisha -- rang me up. Cheese and preserves aren't very expensive and I decided to pay with cash. Switching my tote to my right arm, I rooted around to find my wallet. Success. Now the hard part: unzipping the little pocket. Seeing me struggle, Alisha offered to help. At that moment I got the zipper undone. My next challenge was removing a $20 bill -- I got the bill out but couldn't unfold it. Once again, Alisha offered to help. This time I accepted, gratefully. She unfolded the bill, counted out my change, put it back in my wallet, and zipped it up. I was touched by her simple act of kindness.

Thank you very much, Alisha.

Italian chatter

There is skepticism on the PLM site about the recent Italian "breakthrough." To wit:

More good news!

So now that they have the gene, where do we go from here? It is good news if they do something with it. I'm not being cynical, just say'in. Let's get a move on.

I know what you mean but it's got to be a step forward. Better than finding nothing at all.

Thank you for posting this new goods news sara ! yes very peice of th jigsaw puzzle as they say is great !

thanks for the good news sara,lets hope they get some more peices of the jigsaw soon

I do not mean this in a negative way BUT show me something other than press releases... lithium iplex.... The Italians are great people! But I can only eat so much Italian! They do however get a A++ in ALS propaganda

I heard that it may not be true.... I'm not going to believe Italian information anymore. Food is good, ALS reporting rubbish.

A little irony to go with your morning coffee

I find it so ironic that I had an endometrial ablation to stop "things" from happening, this after having had a tubal ligation 10 years ago, and I now own two pairs of maternity pants because they have a nice elastic waist and no buttonszippershooks.

Still haven't found a decent pair of pregger jeans, though. I don't remember the last time I went this long without wearing denim. I doubt I have EVER gone this long.



Interesting news

Italians find ALS gene
'First piece of jigsaw, ' researcher says
(ANSA) - Turin, March 3 - An Italian-led study has identified a gene that regulates the killer nerve-wasting disease Amyotrophic Lateral Sclerosis (ALS).

''This is a first but very important piece of the jigsaw in discovering the causes that trigger this mysterious and crippling disease,'' said lead researcher Adriano Chio' of Turin's La Molinette hospital.

The study, which appears in the current edition of the journal Human Molecular Genetics, was carried out last year by ten Italian research centres, five in America, two in London and two in Germany.

It was coordinated by La Molinette's neurology department under the direction of Roberto Murani.

Tests were performed on 2,161 patients, 900 of them Italian. The others were American and German.

The 1.5-million-euro two-phase study, which looked at the so-called 'sporadic' type of ALS and not the hereditary type, identified a gene called Sunc1 which appears to play a predominant role in regulating ALS.

But Chio' said Sunc1 was ''probably just the tip of the iceberg''.

He said the study will now move into a third phase in which 300 new patients will be examined, all of them Italian.

''The goal will be to try and find the other genes,'' Chio' said.

Chio' has been helping Turin prosecutor Raffaele Guariniello investigate the apparently disproportionate occurrence of ALS, or Lou Gehrig's Disease, in the Italian soccer world.

But the researcher stressed that ''ALS can strike anyone''.

''We recently discovered a higher occurrence (of the disease) also among farm workers and welders who frequently handle certain types of metals,'' he said.

However, Chio' cautioned that ''thus far, epidemiological studies on the diffusion of this disease are far from discovering its true cause''.

''The important thing is to press on with research, especially now that these important results have laid a major building block.'' The 2008 study was funded by the Italian Soccer Federation (FIGC), the Italian government's Health Institute and the regional government of Piedmont.

The third phase has already been approved and the Italian health minisry has already earmarked 400,000 euros towards it. SOCCER DEATHS.

Guariniello, the Turin prosecutor assisted by Chio', has been investigating suspect soccer deaths for ten years.

He is probing the deaths of 35 former soccer players.

ALS funding received a boost last year when former AC Milan and Fiorentina striker Stefano Borgonovo, 44, revealed he was suffering from it.

The Italian funding drive kicked off last October when Borgonovo's ex-team mates including Ruud Gullit and Roberto Baggio appeared at a charity match in Florence. Baggio called Borgonovo ''a modern hero''.

The FIGC and other bodies have backed Borgonovo's call to find ''a new penicillin''.

Before Borgonovo, former Genoa skipper Gianluca Signorini was the most prominent victim of ALS, dying of the disease six years ago at the age of 42.

Former Juventus striker Gianluca Vialli is also putting money into ALS research, stressing that suggested causes for the soccer cases like doping, traumatic injuries and pitch chemicals, have not been proven.

In America ALS is commonly known as Lou Gehrig's Disease after the first top sportsman to die of it, a legendary New York Yankees baseball player who died in 1941 at the age of 37.

British physicist Stephen Hawking is probably the best-known person living with ALS.

ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. One to two people per 100,000 develop ALS each year.

In the general population, ALS most commonly strikes people between 40 and 60 years of age. Men are affected slightly more often than women.

Scientists have been vainly trying for decades to find a cause for ALS.

The onset of the disease has been linked to several factors, including a virus, exposure to neurotoxins or heavy metals, DNA defects, immune system abnormalities and enzyme flaws.

photo: Borgonovo with Baggio in October


Killer icicles

Aren't they BEAUTIFUL???


Thank you, kind neighbors, for clearing my front walk and my driveway and my car. You are amazing.

March is a lion

It's snowing. (Written last night.)

Working from home today. The snow is pretty, but hell to drive in. We have eight inches and it's still coming.

Back to those amethyst sheets for the time being.



I am a bit stiff today, I imagine from yesterday's tumble. My wrist REALLY hurts, and I think I must've hit my chin, too, although the only evidence is the pain.

We got a tiny layer of snow last night but the forecast calls for more overnight tonight. Part of me is hoping like a small child that we get a snow day, especially since I put my ultra favorite sheets on my bed. Yep, the 1,000 thread count, amethyst ones. Smooth like butter, they are, and perfect for midday napping.

Before the deluge, however, I have a few errands to run. All on flat surfaces , ha ha!

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