Friday, May 31, 2013


It's been 2 weeks since I finished my drug trial, and I have felt a noticeable improvement in my general wellbeing since then.

Don't get me wrong ; ALS is still taking its toll on me.

While on the drug trial I found it impossible to function without lengthy naps in the morning and afternoon. I simply felt like I needed to crash.

In retrospect, that also left me less alert.

In the past 2 weeks, my energy levels seem to have rebounded very well. I do feel the need to have a nap, but it's much more of a short maintenance nap than a pair of epic recovery naps.

It would be easy to assume that the drug I was testing is responsible for the contrast, but I thought I was on a placebo! Still, the trial did modify my regular medication

I couldn't tell you what is truly behind the uptick in my condition, or how long the change might last. But I'm not complaining!

Glossary of Terms

At a recent appointment, I found myself cross - eyed and confused. It wasn't the side effects of my medication that caused my consternation, but another discussion with another acronym.

I was struggling to keep up with all the terms being thrown around.

After asking around on twitter, I found a good glossary of terms - ALS terms - and have shared the link on the right, just under "Medical Resources"

Feel free to investigate!

Wednesday, May 29, 2013

Friday, May 24, 2013

ALS News

Discovery could aid research into motor neuron disease
Dopamine was also found to drive the development of motor neurons in human embryonic stem cells, potentially paving the way for new and improved studies into motor neuron disease. The work, published in the journal Developmental Cell, involved ...
See all stories on this topic »
$1.2 Million Funding Available for DoD Amyotrophic Lateral Sclerosis ...
Targeted News Service (subscription)
WASHINGTON, May 24 -- The U.S. Army Medical Research Acquisition Activity has announced that it expects to award a maximum of two cooperative agreement grants for amyotrophic lateral sclerosis therapies. The estimated total program funding available ...
See all stories on this topic »

Thursday, May 23, 2013

I'm a Washout

I completed my penultimate drug trial appointment today. It lasted an hour, and consisted of the usual questions and examinations.

In a pleasant surprise my scores were all a fraction higher. All except my weight, which I am blaming on a couple days with a poor diet and an (awesome) time sat watching a game at Camden Yards... in some toasty temperatures

Wednesday, May 22, 2013

Drug Trial Update

I consumed my final dose of the drug I am testing last Thursday.

That was the simple part of the appointment. I also completed a range of tests, had blood samples taken, and returned home.

I have two more appointments left in the trial : an appointment this week (I think it's called the "Washout" appointment), and an appointment next month ( to check to I haven't turned into batman).

As much as I love the folks in Baltimore, I'm looking forward to not having quite so many 4hr car journeys for now.

In case you didn't know, I already completed a trial in an earlier phase of the drug.

Here's hoping this week's appointment doesn't involve the use of a garden hose.

Wednesday, May 15, 2013

Standard Bliss

There is a strange difference between what you imagine acceptable behavior from your children before they're born, and when they're alive, well, and running around naked.

Maybe ALS casts a filter. Maybe it doesn't. Maybe sitting in the shade drinking a cold or beer lowers my standards.

I'm fairly certain that it was the sound of you two laughing, splashing around, throwing rocks, collecting rocks, Louise pronouncing Cora's name as, "Ora," and Ora working on a collection of rocks...

... That had my emotions gently rocking from bliss to thinking, "fuck ALS," and back again.

Thankfully I spent most of my time in a state of bliss.

Thank you


Amanda and I spent 24hrs in Washington DC this weekend, arriving at 4pm on Friday afternoon.

I've been to DC before, but this was the first time I went with Amanda.

The sole reason we went was to spend some time meeting with Michael and Libby Jaillet.
People who work for charities involved in the fight against ALS will often ask Amanda and I if we have attended any of the various support groups available to us. So far, the answer has always been, "No."

The most simple explanation is that the support groups invariably meet at a time that is impossible for us to make.

If I delve a little deeper, I'd probably confess that I already have a support group...on twitter. Doctors, caregivers, families that have lost a loved one to ALS, fundraisers, pharmaceutical companies, and ALS patients ...the full spectrum of the ALS community.

I'll talk about my twitter support group at a later date, but for the context of this post, twitter is how we met the Jaillets. I know that Amanda and Libby have become particularly close. Twitter messages grew to regular text messages, and text messages quickly became emails.

To piggyback on the Jaillets being in DC for an ALS conference, Amanda and I decided it was a great reason to visit the capital and Michael and Libby.

Needless to say, it was one of those trips where you wonder, "why didn't we do this before?" It was the first time I ever spoke with another PALS about ALS at length.

 Amanda and I visited the Lincoln Memorial the following morning. We walked back to our hotel from there, enjoying stops along the reflecting pool, before spending a decent chunk of time taking in the WWII Memorial. 

We decided to take a more direct route back to our hotel from there. As fate would have it, the route took us past the White House. We loaded up the car and left town, as quickly as anyone can leave DC.

After we made it to I-66,I was able to relax and reflect on the trip. There were countless memorable moments with the Jaillets, and I think I will keep those moments in my personal memory vault. But I would like to share a thought I had while at the Lincoln Memorial.

 On Lincoln's right hand side, his words from the Gettysburg Address are inscribed on the wall of the memorial. Forgive me for not giving a mini history lesson on the speech, but there are many resources available on the battle of Gettysburg, and the context of Lincoln's speech. The following except struck a nerve with me :

The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain.
 Old Abe had a way with words.

Monday, May 6, 2013


A slightly morbid topic, but a headline I read today got my blood boiling: John Doe Loses Battle with ALS.

I've withheld the name of the patient because everyone's battle with ALS is different, and maybe that family found that phrase appropriate.

My reaction was a little different.

I really take issue with the phrase, "Loses Battle." To use the word, "Battle," would imply that life may be fought for, as if it was up for grabs.

Then there's the word, "Loses." As if to say that the death should be chalked up in columns tallying wins and losses.

Editors should be much more considerate. Surely something like, "John Doe Bravely Finishes Fight with ALS."
Just a thought,

Sunday, May 5, 2013

Chateau De Waffles

For anyone who has not had the pleasure, Waffle House is a chain of small restaurants that serve breakfast 24hrs a day.

The food is so bad that it's good. If it isn't fried, they don't serve it.

We stopped at Waffle House this morning on the way home from getting the groceries.

Amanda and I had pulled up to the same Waffle House at the end of our first date, over 10 years ago. I couldn't tell you what I ate back then, but that would be among the most pointless details.

I couldn't sit there yesterday without reaching back for the important details of that first date.

We met that night in the Southern Inn.

We watched a movie.

We went to my place to (in spite of my ulterior motives) watch another movie. I don't think I stopped smiling or laughing all night. I'm not sure I slept much that night, but it felt like I fell asleep with a smile on my face.

When we got up - and in keeping with my luxurious style - we went to Waffle House.

November 19th,8pm, Jack and Coke for me, Yuengling beer for Amanda, I wore jeans and a leather coat that would make a drug dealer jealous, Amanda wore a sweater that was later nicknamed "the yeti, " the movie was Monsters Inc. " We sat upstairs with buttery popcorn and a bucket of coke, I was denied a kiss in the middle of the film. I was given clearance for our first the middle of a filthy alley after the movie. Our first cat, Boo, was named after one of the main characters from Monsters Inc. In keeping with the theme of computers animated movies, we watched Shrek. We went to Waffle House in Amanda's '89 Pathfinder. It was silver, rusty, and held together with expanding spray foam. Amanda put her hair up using a pencil. We went in for breakfast.

Cora and Louise were fascinated with Waffle House. Amanda and I exchanged smiles.

I think this will be another night where I fall asleep with a smile on my face.

Saturday, May 4, 2013

Learning Curve

Louise, today you said, "Love you," to me for the first time. I came out to welcome you home from day care. While I rounded up the dogs, you had already arrived at the top of the ramp up to the house. You ou came back down, took my hand, and helped me get up the ramp.

Cora, If we could combine every positive moment from my teaching and coaching,  the scale of that happiness would pale in comparison to the joy I get from helping you to learn how to read.



Today was unusual. The weather hit what I consider perfect conditions (low 70s and a slight breeze).

When the girls got home, they consumed a round of Popsicles. Cora grabbed a walkie talkie (that had lay dormant since the Conway Cup), and took off outside with her bicycle helmet. Louise finished making an art installation using her Popsicle, and went out with Amanda.

I followed behind, taking my walking frame out to break her in.

I left the frame (currently accepting suggestions for nicknames) sitting in the garage while I plodded around outside.

Cora caught a caterpillar and enclosed it in a jar Amanda had brought outside, before helping Louise on to her big sisters bike.

Cora proceeded to push Louise around the driveway, to the obvious delight of Louise.

Amanda finished working on one flower bed, before heading to the patio behind the house to continue gardening.

The girls and I followed

Amanda was able to get most of her flowers watered before Cora, Louise, and a slew of toy watering cans joined in "watering" the flowers.

I sat with a smug look on my face.

We soon went inside and enjoyed dinner before throwing a dancing game on the game console.

I couldn't explain why Michael Jackson wore a single, sequined glove to Cora. Luckily, Amanda had the game up and running before Cora was able to question anything else.

Watching the 3 girls dancing was better for me than any medicine.