Friday, July 19, 2013


My new communication device shipped today. I'm pretty excited about it. I have been using an older model from Tobii for about a month already, and really like its functionality out of the box.

I have also found it really easy to create my own communication screens. It took no time to create a screen with all the commands I use with my service dog, Jake. To save him some confusion, we also recorded sound clips of me saying the commands for Jake.

The model I'm using was always intended as a stop-gap measure; I placed my order for the new I15 in anticipation of its release.

The new model has some huge improvements in its hardware: a solid-state hard drive, rear and front facing cameras, better speakers, improved IR remote capability, and a much better screen.

We'll likely go out to get remote controlled light switches this weekend. The switches should tie in easily with the new device, and gives me an easy way to interact with my surroundings at home.

Tuesday, July 16, 2013

Cart before Horse

Amanda and I have started shopping around for a new vehicle. Things are definitely at the early stages, but ALS forces us to pose some uncomfortable questions as part of the search.

We are forced to project how my symptoms will progress. What vehicle is suited to the figurative journey I face? Will the vehicle be suitable for the hardware I will use, like a wheelchair? Headroom? Clearance? Ramp? Is there room for the girls?

This all crosses our mind before we've even looked at our budget.

One of the many challenges with ALS is the preparation and planning required to stay a step ahead of your needs. I feel like Amanda and I have done well in this regard, but it's not like ALS gives you time to sit back and bask in the glory of a job well done!

Here's hoping for an easy vehicle search. Does such a thing exist?


Sunday, July 14, 2013


I thought I'd fallen victim to some new, outrageous symptom of ALS.

Amanda was helping me dry off after a shower.

She reached for a large brush on the shelf and said,"Let me brush your back."

I cannot begin to explain the fear that went through my mind. Was my back so hairy that I looked like Bigfoot? Why did she need a large woman's brush? Does my back look like a pelt?

Why didn't the folks at Hopkins warn me about this?

I was a moment away from turning around to check out my allegedly hairy back, when I simply said, "Huh?"

It turns out Amanda said, "Let me brush your hair back."

God, I must be tired!

Thursday, July 11, 2013

Wednesday, July 10, 2013

Tuesday, July 9, 2013

Cool Yer Jets

We got word this past week that our most recent inquiries about my flying in a military jet have not panned out.

...and just when my home
training was picking up
There were concerns about my ability to cope with the physical rigors that I may be subjected to.

Let's be honest, if you operated a multi-million dollar aircraft, would you let someone ride that would have difficulty operating the ejector seat?

Still, all is not lost. I don't think I should reveal too much, but I understand that we are looking in to some other options.

I should cool my jets about this bucket list item, but I can't help keeping my fingers crossed.

Sunday, July 7, 2013


A very happy birthday to Louise! Today is her second birthday.

with love.

Friday, July 5, 2013

Kids' Comments

Cora said, "Daddy, your body isn't working right." She had a point. I was attempting to get up from laying down on a love seat, and all with the casual style of a beetle stuck on its back.

Louise's vocabulary continues to expand. I have nothing but selfish excitement; I believe the phrase, "I love you," is just around the corner.


Wednesday, July 3, 2013

Prep for the 4th

The build-up to tomorrow has begun. Cora is giddy at the thought of the traditional kids bike ride down Main Street, Louise is just giddy about everything, and Amanda and I are looking forward to a day of fun, food, and fireworks.

There's a chance of rain, so we're trying not to get too excited.

In other news, the actor James Gandolfini passed away recently. Gandolfini was best known for his lead role in the mob series, The Sopranos. Another performance by Gandolfini caught my attention recently; his recital of Lou Gehrig's farewell speech. I was lucky enough to find the full version of the recital on YouTube, and have placed it at the top of the blog. I think i'll leave it there. Why? Why now?

Lou -- "The Ironhorse" -- gave his farewell speech on July 4th, 1939. Lou's speech is usually clipped when it's played, so I encourage you to check out the whole thing.

Steve Gleason had some publicity recently, by way of a segment on GMA. Watching reports about ALS is always emotional.  At the end of it all, I have to remind myself to at least be thankful that ALS is getting some air time. Check out the story here.