Friday, February 28, 2014

Bigger

I've had my VMI class ring since November, 1999.

I was delighted to receive my class ring, but I seldom wore it over the next decade. To put it as succinctly as I can, I felt like too many people walked around as if a VMI ring gave them instant penis enlargement. There was a swagger that just didn't sit well with me.

Perhaps one of the more pleasant surprises from my ALS battle has been the degree to which the real spirit and nature of a VMI graduate has shone through. 

My Brother Rats have gone skydiving with me, shown me an outpouring of support, and quite a few have made appearances at the Conway Cup. Hell, an alum twice my age has been stopping by to help prepare our firewood.

All of which gave me cause to rethink my near-15-year assumption late in the fall. I took my ring to Robbie Jones '52 (one of those really old grads) to have it resized. It came back last week and it's barely been off my finger.

As I mentioned before... 
"It is not the oath that makes us believe the man, but the man the oath." - Aeschylus

Tuesday, February 25, 2014

The Conway Cup

Well, I have slept for what feels like a week.

Of course, it's been just 48 hours since The Conway Cup ended.

I still feel like I'm coming down from a combination of an adrenaline rush, the awesome experience of seeing so many familiar faces,  the heart-warming feeling of seeing so many people enjoying the day, and simply being able to  share the day with everyone.

I'll get to the results in a moment, but I owe some thanks to 2 particular teams first. We weren't able to pull a full women's collegiate group together this year. We tried, but only EMU Women and Ferrum Women signed up. We thought that it was only right to offer both teams a slot in our Adult open group, and they accepted. I just wanted to thank both teams for their participation, and willingness to play. Thank You.

The Champions of this year's tournament were:

Jr Boys - Giles County
Jr Girls - SML Jets
High School - The Sharks
Men's Collegiate - Real Roanoke
Adult Open - 07 to 12

I haven't really had time to pull too many statistics together, but the event felt like a success.

I have more people to thank...I suggest a folks buy tomorrow's News-Gazette newspaper.

Saturday, February 15, 2014

Tube

The procedure to insert a feeding tube in to my stomach has been scheduled for March 5th.

I think that's  about ten days after the Conway Cup. It looks like I'll be taking it easy during that interim period.

The decision to put in the tube was forced by my Forced Vital Capacity measurement: how much air I can quickly breath out. My measurement was 2.77 litres, which is 48% of what an average man my age can do.

At that measurement, the feeding tube can be inserted in an outpatient procedure. There is a threshold at which the procedure would have to be done as an inpatient, and another threshold at which the tube can no longer be safely inserted.

Change

Nothing has changed.

I often compare living with ALS to a journey.

I often point out that the journey of a pALS has the same beginning and destination as any other. The path may be different, but those two points are consistent. That's still the same.

I suppose that the emotional limbo I've felt for a few days has simply been the time its taken me to realize the above.

Friday, February 7, 2014

Turn

The news from Mondays visit to Hopkins is still sinking in.

Amanda and have decided to cancel todays therapy session, and enjoy a cocktail instead...maybe we should shop around for a counselor with superb mixing skills. Maybe our current counselor can mix a mean cocktail. I should ask.

The looming need for a feeding tube doesn't really concern me -- you can pour cocktails down there, right?

But my prognosis is proving harder to process. In a way, its strange that my prognosis would be so difficult to grasp. I've yet to hear of anyone making it out of life alive. And I've known the destination of this journey ever since my diagnosis.

Maybe the difficulty in comprehending my prognosis is simply because my journey feels like it's taken such a sharp, definitive turn.

Here's a toast to handling sharp turns.

Tuesday, February 4, 2014

Conservatively

Amanda and I returned home from Baltimore today. I had an appointment at the ALS Clinic at Johns Hopkins yesterday afternoon.

If you visit this blog frequently, you may recall that clinic appointments follow a certain schedule; see the occupational therapist, see the physical therapist, see the MDA representative, and then see the doctors and nurses that are the backbone of the clinic.

My breathing test was conducted during the final section. My breathing capacity is 48% of what it should be for an average man my age.

That value means I'm now due to get a feeding tube inserted in the next 8 weeks.

It also means that my prognosis is, conservatively, making it another 12-18 months.