Thursday, October 27, 2011

MRI Music

The MRI is so loud -- think malfunctioning game show buzzer -- that you're given ear-buds to protect your ears, then headphones to pipe in loud music.

Gave me a giggle when this came on...


I had a visit to the MRI Unit at the Augusta Medical Center today. As usual, the staff were all friendly and helpful.

The scan was completed in under 30 minutes, and I even got a glimpse of the screen as I left: there is a brain in there.

I grabbed something for lunch before returning to pick up a disk with all the images collected from the MRI. Folks at Johns Hopkins will want to see the results...

Medical Questions and Stating the Obvious

I was thinking back to a question Dr. Rothstein asked me at my appointment two weeks ago. He was asking if I was noticeably more emotional these days. At the time, I simply answered, "yes," and moved on.

Now I wonder if anyone has ever said, "Nah, this whole ALS diagnosis thing doesn't really bother me." I'm sure this type of symptom must play in to the diagnosis, but the question really is on a par with the airport security question, "anyone given you a bomb to carry?"

Speaking of the obvious, the fine print for Rilutek asks me, before I take it, to inform my Physician if I'm allergic to the medication... ... ... ...okay, I'll bite: how in the hell do I know if I'm allergic before I've taken it?

Monday, October 24, 2011

What a Weekend

It's hard to know where to begin with all the events of the past week or so, particularly this weekend...

An international wedding, family visiting we haven't seen in forever, a lovely visit from my entire family, golf, an alumni soccer game with the biggest cheering section ever, and a big family dinner.

Neil and Jill, and their friends and family all made the trip over to get married at the House Mountain Inn. It was simply wonderful. Cora and her cousin, Clare, served as flower girls, and pushed my ability to hold back a tear. The wedding party looked great, and the girls were adorable. The entire event was fantastic; a wonderful celebration that Neil and Jill fully deserve.

My cousin Susan and her son, Liam, were also with us. Susan and I calculated that it had been  roughly 15 years since we had last seen each other...allow me to state the obvious: a lot happens in 15 years! It was simply fantastic to see Susan and to meet Liam. I took them both for a quick tour of Lexington and the VMI campus. Speaking of which, please disregard anything Liam says about beating me on the basketball court! All joking aside, we had a wonderful time, and were sad to see them go. Here's looking forward to some wonderful pictures of their visit to New York!

Susan and Liam's visit was quickly followed by a visit from the Charlotte wing of the Conway family. The Huntersville contingent made it in on Friday night -- and were extremely kind in grabbing dinner and setting it up for Amanda -- and the Providence contingent arrived on Saturday afternoon. It was simply wonderful to see everyone. Martin and I grabbed a sly 9 holes at the local golf course on Saturday morning, we all enjoyed a fun time at the Apple Festival at the Stonewall Jackson house, ice cream followed before getting home just in time for Nana and Pop's arrival!

Needless to say, we were all delighted to see Nana and Pop, but none more so than the children who lost their minds when they arrived. A LOT of cavorting, playing, screaming and laughing followed...and the children seemed to have fun as well! Again, jokes aside, there were lots of laughs, lots of good food, and lots of good pumpkin carvers. We all crashed that night in front of a movie.

Sunday brought a nice early visit from Pop, who was kind enough to provide breakfast. Sitting watching the Manchester derby reminded me of many previous days in my youth spent hunkered down on a brisk day watching a good football game on the "telly."

Sunday afternoon brought more wonderful memories as my entire family - from Lexington and Charlotte - came out to watch me play in an alumni tournament with VMI's soccer team. Being able to play with my brother made it extra special. Passing the ball around brought back many good memories of kicking the ball around with my Dad and my Brother at one of the many local fields when I was younger. The fact Martin also scored a crop of goals didn't hurt either, although I understand he's experiencing some tight muscles today!

The end of the tournament was followed by a lovely buffet-style meal at Salernos. The food was good and filling, and it was nice to see everyone around a nice big table. Perhaps that will be the lasting memory from the past ten days: laughter and smiles.

Tuesday, October 18, 2011

Indian-Scottish Proverb

I mentioned to my brother, Martin, an Indian proverb I noticed on the wall of my Doctor's office:
Never let too much of yesterday get in the way of today
In the course of our conversation, and in light of some of the things that lay ahead, we created:
Never let too much of tomorrow get in the way of today


Amanda and I had dinner with Mike and Emily on Saturday night, and what a wonderful dinner it was...grumpy hostess aside.

It was wonderful to go out and relax over a good meal (at the Southern Inn). Good conversation, nice cocktails, and great company!

As with many moments in the past week, ALS - or my ALS news - wipes away the fog of daily life, and shows people for the kind-hearted souls they really are. Mike and Emily were extremely supportive, listened attentively, and offered sound advice...hard to go wrong with that!

Monday, October 17, 2011

Friday Night Football

A rare Friday night football game and the aftermath of Neil and Jill's wonderful wedding made it possible for my Dad to come out and watch me play last week.

It was a lot of fun, although, after such a long week, I wasn't feeling extremely energetic. The game ended 4-4, but I'll remember it for my Dad being there.

Speaking over a pint after the game, we realized it had been a decade since my Dad had seen me play. It was so nice to hear his voice, and so nice to pull off a nice trick or pass and see a smile spread across his face. More of that medicine, please.

Sunday, October 16, 2011

Remind me

...To write about Friday night football and dinner with friends

Friday, October 14, 2011

Pillow Pep Talks

I couldn't tell you if it was just an over-active mind or something else, but I found it hard to fall asleep last night.

As crap as that was, it also meant I was awake for Amanda's return from feeding Louise. I know I can't recount everything we said, but I know it was enough to remind me of what a special woman I've found.

In truth, as bad as my news has been, it has helped me to see how truly wonderful my family and friends are. Thanks to everyone for your support!

Thursday, October 13, 2011

Passing Along the News

Maybe time will prove me wrong, but I've yet to find it any easier to tell people of my diagnosis. My boss and line-manager are the latest to find out. It seems only fair to keep my employer informed, given how this will all impact my work.

Now there's a blog address not many people are interested in owning!

My name is Tony Conway, and I have ALS. 

If we're going by official titles, then I should say that I have Amyotrophic lateral sclerosis, or Lou Gehrig's Disease for you baseball aficionados.

Folks at Johns Hopkins Hospital are still completing some tests, but Dr. Rothstein was pretty confident in his diagnosis. My holding out hope for a different diagnosis would seem like wasted energy at this point.

It's hardly surprising that a blog address "ihaveals" should be available; I can't imagine too many people being prepared to write about this, but I see some value. It's helpful to me -- a release -- to write about the things going through my mind, and, who knows, maybe someone else out there who suffers from ALS will find it valuable.

Anyway, today is day two of my Rilutek/Riluzole regimen. I'm told it's the only FDA approved drug out there for ALS. Dr. Rothstein was abundantly clear: this isn't a cure, it just slows the process down.