ALSA Fundraising Walk - Charlotte

Huge congratulations go out to my Dad, and everyone involved with the "Tony's Huddle" team at this Saturday's ALS walk.

I'm sorry I couldn't be there. But the pictures from the event were uplifting and empowering for me. I hope the event evoked similar emotions for you.

Thank you.

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.

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 gait 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.

NPR: Drug Trial Pitfalls

Insight on the pitfalls of drug trials and ALS from NPR



http://www.npr.org/blogs/health/2014/04/08/298335701/how-mouse-studies-lead-medical-research-down-dead-ends

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.