Thursday, July 26, 2012


A busy few weeks ahead, so just a song or two until things calm down...

Thursday, July 19, 2012

ALS MND News Digest

New studies show spinal cord injury and ALS respond to cell transplantation
Science Codex
18 , 2012) – Two studies published in a recent issue of Cell Medicine [2(2)] report on the therapeutic efficacy of stem cell transplantation in animal models of amyotrophic lateral sclerosis (ALS) and spinal cord injury (SCI). Cell Medicine is freely available ...
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Tuesday, July 17, 2012

Camp Stephie

We are in the middle of the busiest part of our summer, so this update is a little overdue...

Two weeks ago, we spent a wonderful long weekend along the Patuxent River at the home of our good friends, Stephanie and Claude. Tony had a Monday appointment at the ALS clinic at Johns Hopkins, and Camp Stephie is only about two hours away. We drove up on Friday, and it was Louise's first trip in her big girl car seat! She loved it!

I'm not sure who was more excited to see the river, Cora or Jake!

Friday night there was a horrible thunderstorm at home in Lexington, and our house (and most of the rest of the county) lost power. Renata, my mom, my dad, and Phyllis all deserve a huge thank you for all the work they did, including cleaning up our yard, and cleaning out the fridge!

Meanwhile, at Camp Stephie... we were sympathetic to our family at home, but we were quite happy to enjoy the plentiful benefits of electricity! We toured the fairy houses at AnnMarie Gardens, enjoyed steaming some crabs, and spent some quality time by the river. We also got to see a lot of the Stevens clan on Sunday afternoon. Tony and Claude had a thrilling trip to a local tattoo parlor. Tony scored some new ink... a small tribute to our lovely girls.

The Monday trip to Johns Hopkins turned into a long one. We went up early for a good lunch, got to the hospital on time, and went through the gambit of health professionals during Tony's appointment. We knew that Tony has lost strength in his shoulders and hands, but they said other parts of his body are still strong. Most importantly, his breathing is very good.

We stayed over in Maryland one day longer than we had planned while waiting for the power to come back on at home. Wednesday, the 4th of July, we headed home. It was wonderful to come home to a house that was undamaged after so many other people were not as lucky.

Thanks again Stephanie and Claude!

Wednesday, July 11, 2012


I got to hang out and watch the end of the RSCA footy camp two weeks ago. Having caught a glimpse of the guys earlier in the camp, the positive change in their play was abundantly clear.

After the camp, Richie introduced me to the assembled players and their families. The goal was to introduce the Conway Cup, but my emotions got the better of me...Richie stepped in to fill the void.

As people were leaving, a couple approached me. Eddie stepped forward and shook my hand. With an emotional face, Eddie quickly explained that his mother passed away from ALS when he was 3 years old.

I promptly lost it again.

Given that my daughters - 1 and 4 - are so close to Eddie's age when his Mother passed, I found it impossible not to get emotional.

As I explained later to Amanda, one of my biggest worries is that my girl's lives don't go off the rails should I lose my fight with ALS. Seeing Eddie tapped directly in to that point of concern, but in a positive way. After all, here was a wonderful man with his wife and son that had dealt with the loss of his mother to lead a good life.

Perhaps my mind focuses too much on the negative. Eddie was a good reminder of the positive.

ALS MND Daily News Digest

FIFA meet Borgonovo Foundation scientific board
The meeting enabled both sides to exchange experiences regarding the severe and currently incurable neurodegenerative disease amyotrophic lateral sclerosis (ALS) in sport (including football). One of the primary aims of FIFA's Medical Assessment and ...
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Saturday, July 7, 2012


Louise entered the world exactly one year ago. Happy Birthday!
oops  - a couple pics made it in twice

Friday, July 6, 2012

Before Tomorrow

July 5th, 2011 was the first time a doctor, my doctor, mentioned a concern about my symptoms, and the disease Amyotrophic Lateral Sclerosis. Just over a year ago.

There wasn't a diagnosis, rather a list of things that could explain my symptoms. Some mild ailments were at one end of the spectrum, and ALS at the other.

With Louise's birth - a c-section - planned for two days later, my mind was simply overloaded with emotion.

Amanda surprised me outside the doctor's office that day. We went across the road for breakfast and a debrief. Given the pending birth of Louise, I was determined not to talk about the worst-case scenario I'd just been told of. I was successful, although I got emotional when Amanda talked about Cora...

...The first of many ALS-inspired emotional moments when thinking about my girls.

Louise's birth followed two days later.

In spite of everything going through my mind, Louise's birth was amazing.