Saturday, August 31, 2013

Roadside Assistance

An uplifting little story...

Recently, I wrote about our need for a new family vehicle coming to a head. If you missed that post, you can find it here: Wheels.

Amanda was recently contacted by a dear friend she's known since her days as a student at the University of Virginia, Katie. In response to news of our new van, Katie has taken it upon herself to raise funds to help offset the cost of the van.

It's a totally unexpected and wonderfully sweet gesture. Please follow Katie's effort here: http://www.gofundme.com/42kw7w

Sunday, August 25, 2013

Little Helper

Louise is two years old. Her vocabulary seems to expand every hour, and her level of understanding and comprehension constantly astounds me. The bad news for Louise is that such obvious brain power makes it easy for Amanda and I to call her bluff on some pitiful tantrums. The tantrums are few and far between, but they happen.

I've written before about the emotions I feel when it comes to the prospect of telling the girls exactly what's wrong with me.  That doesn't even include the anxiety of exactly how I should explain it.

That's where the girls' aforementioned understanding has been particularly helpful.

Louise, having observed Amanda, now tries to help me stand up, get dressed, drink, and take my medicine.

A clever girl.

Friday, August 23, 2013

What's your favorite word to say?

linguistically?

Wheels

We took delivery of an new mini-van today.

Amanda's older van was showing its age, and we really needed to get something better. In another instance of having to project how my symptoms will progress, we decided that a wheelchair accessible van was the sensible choice.

We began doing research a few months ago, and gradually became acquainted with the makes of van that are typically used, and the various seating arrangements that are used.


Our van is a used Toyota Sienna, with a side door ramp conversion by Braun Mobility. The side door conversion means that the middle row has been removed, but the back row remains. The missing row gives flexibility with where the wheelchair can be located while the back row provides ample room for Cora and Louise.

The van, as you can see, looks like a regular van. In truth, the van has undergone an extensive refit. The entire floor was removed, and a lowered considerably. The suspension has been beefed up, and a feature has been added to allow the side of the van can lower and make the ramp incline at a manageable angle.

I wasn't looking forward to telling Cora about the van. How would I explain the ramp?

As it happens, Amanda and the girls picked me up from VMI after practice. Cora caught players as they were leaving the field, and proceeded to show off the van and the ramp to everyone!

Cora saves the day.

A lot of people deserve our thanks for helping to make this possible; thank you.

Thursday, August 22, 2013

Tongue Tied

I don't know that I ever thought I'd lose my voice.

As things are going, it will be a toss-up between my speech and my mobility as to which ability I'll lose first.

In an emotional twist I honestly didn't see coming, my potential loss of speech is suddenly weighing heavily on my mind. I suppose the loss of mobility has been so prominent in my mind for so long that I almost forgot about my speech.

Amanda is quick to remind me that theres a difference between losing the ability to speak, and losing your voice. I really wanted to argue this point, but I think Amanda's right. Just don't tell her I said that.



Sunday, August 18, 2013

JR

Burnt

My nose is red, and it isn't because I'm partial to a drink...or three.

I was able to join the VMI men's soccer team for pre-season training over the past two days. Being around a group of college-age players -- and the humor and camaraderie that comes with it -- has been somewhat rejuvenating.It has also reminded of the value of sunblock.

Footy at this time of year also brings back some memories. The temperature when I did pre-season training was always scorching, and the humidity was always high. My first pre-season was spent mostly on an exercise bike, as I strove to find a low-impact method to recover from a broken leg. On a side note, today I discovered that the physio/trainer that worked with me has since opened a PT practice in Sarasota.

Dramatic weight loss is my next memory. Initially, I thought the requirement that we record our weight before and after each session was ludicrous. Then I paid attention, and realized I usually dropped over 5lbs during each session. Taking on enough fluids to gain some of that weight back quickly became a part of daily life.


Fitness tests always loomed during pre-season. This year, the VMI guys have already completed a beep test and some interval sprints, and more will follow. Such is the nature of the game that it requires a surreal combination of strength, speed, and stamina. I had fairly mixed luck with my fitness tests. I passed when I was younger, and struggled after trying to bulk up.

Pre-season has also given me reason to reflect on the mentality of a soccer player. VMI has a curious setup, in terms of being an environment conducive to athletic success. Freshmen spend a difficult first week acclimating to their new team, before being figuratively imprisoned by their peers. The first official day of the school year, Matriculation Day, sees that freshmen are separated from their family and friends, relieved of their hair, and placed under the supervision of a group of 18-22 year old students. This Cadre then controls the next 8 days of the freshmen's lives, so it is easy to see why they become guard-like in stature.

And we all know how harmonious prisoner-guard teams are.

Miraculously, things are harmonious on the team. In part, because being with the team is a rare respite from cadre for the freshmen.

But attitudes are different. Confidence is off. A skepticism of authority figures appears, to some degree. A sense that you can't do anything right seems to emerge for some players.

In short, a difficult task gets much harder for the coaching staff.

I suppose that challenge is what constitutes the real work for a coach at VMI.









Wednesday, August 14, 2013

Chillin

 
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Eat

There was about 13lbs of beef. That came to over 50 burgers. Along with a salad, pasta salad, watermelon, and baked beans we put on a decent spread for the VMI men's soccer team.

As with the women's team, the men's team worked the entire day at The Conway Cup.

A cookout seemed like least we could do to say thank you.

Monday, August 12, 2013

Dig In

We took the women's soccer team from VMI out for dinner tonight.

I dropped Amanda in the proverbial deep end by giving her about 30 seconds notice that she had to deliver an informal speech to the team. She did great.

The ladies from VMI have been volunteers every time we've held The Conway Cup. That ends up being a fairly exhausting undertaking; a complete day of work, taking on various jobs, with little rest.
We met the team at Salernos and enjoyed some delicious food, and Cora and Louise kept everyone entertained!

We had a great time.

Our thanks again to the ladies team, and everyone that helps with The Conway Cup.


Thursday, August 8, 2013

Pre-K

An information packet came in the mail for Cora. It contained paperwork and information regarding her big day in September when she starts school.

This is hardly earth-shattering news. In fact, I'm sure more experienced parents are wondering if this is really worthy of a blog post. I have two responses: 1. I think it is a milestone, and worthy of comment; 2. It's my blog, and i'll write about whatever I want!

Upon hearing the name of her new teacher, Cora spent a few moments on the couch quietly repeating the teacher's name to herself. I don't recall ever taking remembering a teacher's name that seriously. I think it's easy to say that Cora is excited!

I am, too.

In a way, attending school represents not only a milestone for Cora, but for Amanda and I, too. the scary thing is that other milestones feel like they happened the last time I blinked!

It feels like bringing Cora home from the hospital happened last week. Like she figured out how to walk midweek. And that her language and motor skills came online yesterday!

September looks set to be an interesting month!

Advocate

I signed up to be an advocate for the ALS Association today (ALSA).

I encourage you to do the same. Signing up is quick and easy, and you can indicate your level of involvement.

Sign up here 

Tuesday, August 6, 2013

Automation

I just placed an order for some hardware that will hopefully allow me to have greater control of my home environment.

The components sound harmless -- two switches, a plug unit, and a control box. I hope the installation is harmless!

As my dexterity and mobility decrease the need and desire to interact with my surroundings only seem to increase. When I rely on others for so much, it becomes increasingly empowering to be able to do things for myself...and bordering on miraculous when I can help others.

The setup will revolve around the control unit that will connect to a simple home network. A browser based interface will allow me to control switches directly. With some additional hardware, the system can expand quickly; lights come on when I enter the room, blinds close and fans turn on when it gets too hot...etc

Still, there's no guarantee that the installation will be easy, so we'll see how we get on with this small setup before trying to expand.

Watch this space!

Monday, August 5, 2013

B.A.

"Before ALS"
Cora and I (and Pooh) catch a nap

Friday, August 2, 2013

Out

The staples are gone, and it didn't hurt.

Amanda and I went for a quick breakfast after my appointment. Niko's  restaurant, across the street, was the obvious choice.

We had been eating for a few moments when two guys came in, and were seated behind us. We soon learned that both men were Catholic clergy.  I can't say what their exact positions were, but both spoke of recently holding Mass...so they're obviously active.

The restaurant was very quiet, so we couldn't help overhearing their conversation. It wasn't long before we heard a remark that stopped us in our tracks.

One man brought up a member of his congregation, and how the gentleman in question had recently been diagnosed with a serious illness.

He said, "I'm not saying God is punishing him with this illness, but he has been a lot kinder to his wife since the diagnosis."

Where do you start with that?

Did God give me ALS because I haven't been good to my wife? Am I sick because I'm a bad guy? What kind of spite or malice must God have to inflict terrible illness on people? If God is forgiving and omnipotent, what must I do to be forgiven and cured? If I am good and God does not cure me, is God  unforgiving, or simply without power?

Regardless, at a time when Amanda and I are in deep discussion about how/when/if to introduce religion to the girls, this comment has cast new light.

Is religion really about morality and ethics? If so, why can't we guide our children as parents? Our values hardly exist in contrast to common religious values. Love, kindness, forgiveness, charity - to name a few - hardly require a deity and scripture to be instilled.

I think the point I take real issue with is the frequency with which religion is self-serving to the faithful, and seemingly ignored when a teaching doesn't line up with a need or belief.

Do you need to believe to have faith? I have faith,  but not belief. You may well question what I have faith in. I have faith in myself.

I hope my girls at least grow up with the same faith.

Thursday, August 1, 2013

Staples

I have an appointment to get six staples removed from my head in the morning.

I fell on Monday. I fell backwards, and landed on a tile floor. Three hours and 6 staples later, I was all fixed. It took a few days for the lump on my head to go away. I have been remarkably free of pain throughout.

Here's hoping I haven't jinxed tomorrows procedure!