Tuesday, April 15, 2014

Prognosis and Care

I recently spoke to some folks that I know read my blog. When I mentioned my prognosis from my clinic visit in February there were quite a few people that hadn't heard the news. It was buried as the last sentence in a blog post, so I suppose I shouldn't be surprised it was missed.

In February, I was told I have 12-18 months to live.

More recently, I have been taken under the wing of our local hospice. The decision to seek hospice care came about as my Doctor-ordered home care reached the limit of what my health insurance would allow. I feel fortunate, since we have a well-developed local hospice that receives a lot of support from the local community.

It has been a smooth transition, and the standard of care I've received has been fantastic.

Wednesday, April 9, 2014

I Fell Down

Really, the only time I'm on my feet is when transferring from one seat or position to another. Even then, the gate belt is on.

I lost my balance, or slipped, or buckled during a transfer in to bed.

Amanda, never letting go of the belt, tried to break my fall. I hit the corner of my nightstand on the way down, and received this scratch (right).

Even though it looks pretty bad, my pain level was negligible, so we patched it up and went to bed.

A day later I was pissing blood. Someone with a title that ends in -ologist can tell you what organ I hurt; I think it's my oil filter.

Things are back to normal now, though the scratch and some wicked bruises remain.

Monday, April 7, 2014

Triggers and Tribulations

Amanda was helping me sit down -- on the porcelain throne, if you must know -- as part of my evening ablutions. For some time now we've accomplished transferring me from one seat to another using a gate belt. For the uninitiated, a gate belt is about the same width as a car seat-belt, with a simple clasp, but it's made from material with a much thicker weave. It quickly goes on, and gives your caregiver a solid point, close to your center of gravity, to leverage you up and ease you down.

About four years ago, I was sitting on our couch, while Cora climbed on our recliner. As I watched her go back and forth from one armrest to the other, I suddenly felt like she was about to lose her balance and fall. I honestly couldn't tell you if Cora fell first, or if my backside was off the couch first. Either way, with a dive I was able to get a hand under her head, and cushion her from the hard landing.

Amanda sat me down and took a step back, taking half a stumble-step as she did so. I had the same feeling in that moment with Amanda as I had with Cora years ago.

Sadly, the physical response was completely different. My limbs, hardest hit by ALS,  had a minor jerk in response to my urgent desire to get up. It was a solemn reminder of how far I've come in my journey, and a completely shitty end to the day.

We've been trying to potty train Louise for some time now. Louise has figured out peeing, and has slept through the night without an accident several times. She uses the potty frequently...to pee. Pooping has been much harder to train.

Out of frustration, I suggested good, old-fashioned bribery.

An inexpensive rotating lamp was purchased, and placed on a prominent shelf. The simple deal was explained to Louise: Make a successful deposit in the potty, and the fancy lamp is yours.

The message was well received. Louise got on the potty as soon as we got home.

It would be another two days before she made a successful deposit, but she did it.

I remember the same milestone for Cora. Amanda and I tried to almost celebrate her accomplishment, in an effort to reinforce her success.

My celebration for Louise was far less expressive. First of all, I cant navigate my wheelchair in to the bathroom the girls use. Secondly, thanks to ALS, all I could really do was to squeal approving noises at Louise when she emerged from the bathroom. No clapping. No jumping around. No picking her up. No giving her a hug.

I got upset, and, a short time later, really angry.

Thursday, March 27, 2014

Marathon

About two months ago our friend, Ben Freakley, got in touch to say that he would be running the Atlanta marathon to benefit our family.

He completed the marathon (in pretty good time) this past weekend.

Ben's wife, Melissa, kept us all up to date on Ben's progress via Facebook. She also posted some great pictures from the finish line.

Given that this was the first time Ben had even attempted a marathon, I can't get over how easy he made it look. I'm almost certain if Ben were sitting with me now, he might confide exactly how hard it was to run that distance. Then again, maybe he's so sore he cant even sit down!

Amanda and I are so blown away by acts of support like this that we run out of appropriate superlatives.

Perhaps it's just best to say a simple thank you, and to just let you know that your support makes us feel truly fortunate.

Sunday, March 23, 2014

Long Day Out

Yesterday I ended up being out of the house for a fairly long time, but it was worth it.
Chuck Steenburgh | VMI

Amanda and I went to  watch the VMI basketball team play, and then caught a Jujitsu tournament.

We took in the VMI vs. IPFW game. VMI is playing in the  College Insider Tournament. It was a great game, and we were fortunate to have great seats down on the floor. VMI won an entertaining game.

We immediately headed up to another building on post. On the top level of Cocke Hall, Jim Whitten and the VMI Jujitsu Club were hosting a tournament to benefit our family. Quite a few people came up and expressed their well wishes and gratitude for being able to compete. 

I'm not sure how to react when people thank me for helping me. I suppose for a brief moment, ALS takes a back seat and I get to share some time with some genuine, good people.