Gary Speed

Haven't had much time to reflect on the passing of Gary Speed. Not sure I really have the words...but it just made me think of this

Where Did the Blog Title Come From?

The eagle-eyed among you will note that the title of the blog has changed from the cumbersome "Amyotrophic Lateral Sclerosis" to "Don't Shrink."

If you know me, and have seen the physical changes I've gone through, then you're likely convinced that this is some black humor at work.

The real motivation came, of course, from the world of football. More accurately, from the mouth of Jock Stein:

Celtic jerseys are not for second best, they don't shrink to fit inferior players

I'm not sure I've ever heard anything that could challenge a player as much as that, and tease out every ounce of effort at the same time.

I face a different challenge, but one that will require a similar measure of effort and strength.

Web servers are updating right now, and you'll soon be able to find this site at the new address www.dontshrink.com (don't worry, ihaveals.blogspot.com will still work as well)

Apologies to those of you that voted on a blog name, but this one just felt right.

Smile

Medical News

Research developments in Canada

Most enjoyable line from the article...

Drinking moderate amounts of wine, coffee and some exercise plus eating a Mediterranean diet and carrying a bit of extra weight help slow the disease progression, Genge said.

...bring it on!

Donate Link

The Muscular Dystrophy Association is one of the largest supporters of ALS patients and ALS research in the US. I've added a Donate to MDA link on the right, for those of you that are interested.

Donating is quick and secure.

Help me name my blog!

Old Fashioned Saturday Morning

Sort of...

...Man Utd game on the TV, Celtic game on the laptop (the web, ahem, wasn't around when I was a boy), Cora is playing games and coloring, and Louise and I are relaxing on the couch.

I think half time calls for fried egg on crunchy rolls :)

Conway Cup

Steve Ross, my old college Coach, took me out for lunch, and introduced his idea: the Conway Cup. A charity 6-a-side football tournament to benefit our family.

I'm blown away.

I'm also really excited. Watch this space.

Giving Thanks

I believe the American holiday of Thanksgiving goes back to when John Madden wanted to see a gridiron game on a Thursday. Madden’s love of turkey is world famous, thus the big bird became the traditional meal.

Well, it’s that, or settlers being thankful that their diseases were more potent than those of the natives.

Either way, this year, Thanksgiving coincides with a moment in my life where I’m trying to take a deep breath, and appreciate the many wonderful parts of my life.

I must confess, there are times when it’s hard to focus on the good. It’s not that there aren’t many things I’m thankful for; there are so many things I’m thankful for. It’s just that when you juxtaposition the good alongside the  path down which ALS will lead me, the good alongside the bad, it can be hard to focus on the good.

I’m thankful for my entire wonderful, supportive family.

I’m thankful for all my wonderful, supportive friends.

I’m thankful to everyone that has offered support, sent messages of love, followed my blog, given hugs when I’m out for groceries, and reached out to help my family.

In the lead up to the holiday season, I sincerely hope you all stay safe, warm, and well.

MDA Update

Of interest...small medical progress

November 23, 2011 Dexpramipexole Phase 2 Results Show Efficacy in ALS

Clinical trial data for the experimental drug show slowing of symptom progression and increase in survival time in people with ALS

Article Highlights:

In a two-part phase 2 clinical trial, dexpramipexole was safe and well-tolerated in people with ALS. Additionally, the experimental treatment showed dose-related slowing of functional decline and extension of survival time. Knopp Biosciences in Pittsburgh, Pa., and Biogen Idec in Weston, Mass., have partnered to develop dexpramipexole as an experimental treatment for ALS. A large phase 3 trial of dexpramipexole has launched in 28 U.S. locations and 10 other countries.

http://alsn.mda.org/news/dexpramipexole-phase-2-results-show-efficacy-als

A Squeeze

I really don't see how we could have done any more activities this past weekend.

A dream granted, a hotel party, vows exchanged, rugs being cut, room service, and an evening unwinding.

Amanda and I received a wonderful invitation to attend Ring Figure at VMI. Amanda took the opportunity to get a new gown (it's not like either of us have an extensive wardrobe of formal wear), and I took the opportunity to try and get in to a kilt. That was difficult. Amanda's gown arrived late on Thursday, and I received word that a tuxedo was the dress code for a quest at Ring Figure; when in Rome, wear a tux.

We took Kevin , Tucker, Matt, Kip, Kyle, and their parents up on the offer of dinner at the Southern Inn. It was a wonderful time. Good food, great company, and a memorable occasion; our sincere thanks to you all for allowing us to share the evening with you.

We shared a wonderful few moments with the Rochows on our way to the Ring Figure Ball. It may have been a short meeting, but it left us in no doubt as to how their son, David, became the good guy that he is.

 On to the ball...

...Amanda and I made the short walk over to the Marshall Center at VMI. No sooner had we hung up our coats than we were being called to the stage for the ring ceremony. It was a little strange to simply walk past all those cadets waiting with their dates, but we walked...right to the front of the queue. Brief introductions followed before we found ourselves on a red carpet inside a giant model of a giant school ring. I joked with Amanda that a few cadets can say they ended up marrying their Ring Figure date, but I must surely be the first to reverse the timing and take his wife to Ring Figure.

I'll never forget he friendly faces waiting to congratulate Amanda and I as we left the auditorium; my love to you all.

Some official pictures were snapped, and I'll post those as soon as I get them.

Happy, but emotionally drained, Amanda and offered our thanks to the guys for having us and made our way home.

I made a quick visit to some hotels on Friday night. It seemed only proper, given the generosity shown to make one of my wishes come true, that I should visit the guys and congratulate them on getting their VMI rings.

Saturday brought an early start to get down  to Gate City, VA, where our close friends, Richie and Kellie, were getting married. Cora was a flower girl for the ceremony, along with Richie's neice, Hannah.

The ceremony was beautiful -- so was the bride! -- and it was a pleasure to share it with Richie and Kellie's friends and family. Truthfully, Amanda and I were distracted for a few moments as Louise picked an interesting time to makes some smiley faces at Amanda.

The rest of the evening was a lot of fun. The wedding reception was a really fun time, and it culminated with Cora showing off her moves on the dance floor. There's something about kids dancing that never ceases making me smile.

The following morning the entire Conway family enjoyed some Room Service before the journey home. There was a wonderful sense of relaxation as well all lay back and enjoyed breakfast.

Our safe journey home was punctuated with an exclamation as David and Phyllis passed on a quilted blanket; a gift from the Rockbridge Pieceworkers. Until we can find the person responsible, we'd simply like to say thank you to you all. The blanket has pride of place in our home, and instantly became my favorite.

And relax

A fantastic, busy weekend. Recap to come tomorrow!

Game Time

What's In a Name?

Well, when your blog is called Amyotrophic Lateral Sclerosis, a lot!

Thinking of giving the blog a friendlier name, but keeping the ihaveals.blogspot.com address.

Any suggestions for a new blog name?

Dear Cora

Dear Cora,
It's hard to start writing this without getting emotional. Honestly, it's been hard to think about writing this without getting emotional.

I've been writing emails to you for over 18 months now, but this will be the toughest one I'll ever write.

It occurred to me recently that the whole world knows what I'm dealing with, but you and Louise don't. On the one hand, that seems extremely unfair, but on the other hand, I'm fairly sure that my heart will break in two whenever I attempt to give you my news. Perhaps that's the reason I've avoided the conversation. Or maybe it's because I really don't think you'll be able to comprehend the phrase, "Daddy is sick," right now.

In a way, you could argue that it is deceptive of me to keep that news from you, and you'd be right. I would counter that it's just my desire to keep things normal for as long as I can. The condition I have won't allow things to be normal for anywhere near as long as I want...so I guess  I'm just doing what I can to keep on having pillow fights, keep playing in the tree house, keep watching movies together, keep making dinner together, keep painting pictures together...just keep on keepin' on. Given my motives, I hope you'll forgive the deception.

ALS gives me so many excuses to become the proverbial floundering ship in a storm, but you, Louise, and your Mum give me the reason to grab the helm and sail.

I love you with all my heart.

Calf Raises

Looks like calf raises may be required: kilt is on the way.

Kilt Search

In light of the comments on yesterday's post, and a few good leads, I'm in the midst of ordering a kilt for Friday night.

4,000

The number of pages viewed on this blog is about to pass 4,000. Judging from the location of my visitors (shown below), I need to learn some new languages. Can anyone out there speak Australian? Think it may require a Fosters or two.

One Down

Three moments in the past months have rendered me speechless. The first two moments were when different Doctors confirmed the same diagnosis. The third was when I got a message from Kip Zechman last night.

Ring Figure, borrowed from marchingpost.wordpress.com 

Kip, a Junior at VMI, had noticed the fifth item on my list. In short, Kip invited Amanda and I out to dinner with his roommates and family. Invited us to the Ring Figure Ball. And then asked that Amanda and I be the first couple through the ring.


As a VMI grad, I've had my doubts about what the Institute is doing, how it prepares its cadets for the world outside, and - on occasion - doubts about the type of person it spits out every May. I used to sum up my views by telling anyone who asked that, for me, VMI seemed like an unsupervised boy scout camp. In my mind, that atmosphere changed with the appointment of LTC Eric Hutchings as the Commandant of Cadets. As commander of the 4th Ranger Training Battalion, it was obvious Hutchings had what it took to turn things around when he arrived back at his Alma Mater. 


I'm proud to count these cadets men as my friends, and I'm awfully proud to have a ring that bares the same name as them.


Now, important question: tux or kilt?

Monday Grind and my First ALS Joke

My arms feel a little heavy this morning, but I hate to think what they'd feel like without the help of Renata, Claudia, Mike, Paul, and Rick yesterday.

We took delivery of a load of fire wood on Thursday, and put out a request for help on short notice. Given that the load consisted of about 20+ denuded oak trunks, it was obvious that more hands were needed.

We had a great response, and yesterday was pegged as the day to tackle the fire wood.

It didn't take long for a good work flow to develop. I jumped around wherever I was needed, Mike manned the chainsaw, Paul man-handled the log-splitter, and Renata took care of getting the logs stacked up. Rick's arrival was a welcome boost, and we really seemed to move in to overdrive. The remains of last season's wood, and well over half of this most recent delivery have been taken care of.

Taking everyone inside for Shepherds Pie (thanks to Amanda and Claudia!) and Irish Coffee didn't really feel like it was enough of a gesture of thanks, so I'll just say it: I am so grateful for all of your help, particularly on such short notice, and I won't forget. Ever.

...

Now, my joke. I was making Irish Coffees for Mike and Paul. I chose to pour the whiskey in first, and then pour in the coffee. Not wanting to go to excess, I used a small glass to measure out the  appropriate amount of whiskey. The combination of my symptoms and a day working on fire wood made pouring an accurate measure difficult. After one particularly bad effort, I turned to Claudia and said, "Well, that was a shaky measure!"

Well I laughed.

Sunday Morning

For Amanda

Happy Friday

Here's to a good weekend

Blood Work

Off out shortly to get some blood drawn. Rilutek is hard on your liver, apparently, and Doctors want to check enzyme levels to make sure all is well.

I want to

A work in progress..

• Go faster than the speed of sound
• Drive a Bugatti
• Take the VMI team to watch the Bhoys
• Fire the biggest weapon I can get my hands on (no penis jokes, please)
• Take Amanda to Ring Figure
• Take the Girls to Disney World
• Take Amanda back to Hawaii
• Make Cora and Louise laugh
• ...to be continued...

Start Your Day Off Right

Snuggle with Amanda
Snuggle with Cora and watch a cartoon
Kiss Louise

...and this strange little song put a kick in my step...

MRI

I won't bore you with the confusing medical jargon, but I did get feedback on my most recent MRI.

Folks at AMC took images of my brain -- nothing prepares you for seeing images of your own white-matter -- and sent the results off for analysis.

In a nutshell, things look fine. Barely any sign of anything crazy going on. What was found, as pointed out in the report, is also seen in a healthy patient.

It's not that this negates anything; I'm sure this is just being used to benchmark my progress from here on.

Glad That's Over

Today wasn't fun. I decided to tell my colleagues and friends of my diagnosis.

People at work seemed to greet the news with stunned silence. My friends and buddies at VMI were much the same. In fact, everyone was teary-eyed, and many people gave me some great hugs.

It doesn't feel good to upset so many people, so I'm glad this day is over.

It's Time

D-Day; H-Hour.

Although I have a publicly-visible blog on the subject, I haven't told too many people of my diagnosis.

That changes today.

I sent word to my colleagues at work this morning, and will be telling some close friends this afternoon.

It will end up being a rough day, but I'll feel better not having to hold this proverbial card close to my chest.

A Good Sunday

The Clinic

This past Monday brought my first visit to the ALS Clinic at Johns Hopkins. Amanda and I set off in the darkness for Baltimore -- many thanks to David and Phyllis for getting the girls off to school -- with a four hour journey ahead of us. Thankfully the roads were  fairly quiet, and the journey in to Baltimore was easy.

I'm not sure how I feel about becoming familiar with a hospital and its surroundings, but I'm becoming more familiar with the Johns Hopkins Out-Patient Unit.

I had barely checked in when I was called back for my appointment. Amanda and I waited a short time before meeting with a rep from MDA, an Occupational therapist, a Physical Therapist, and the clinic director.

Although there were plenty of laughs, the visit wasn't without some sobering moments: life expectancy statistics and forms transferring legal power in the event of a medical catastrophe, to name two.

On the plus side, I'm now the proud owner of a disabled parking sticker, and the staff in the clinic were all extremely responsive and helpful.

My next appointment is in March. Until then, I'll just hope to hear of a clinical trial that needs my help.

Ryan

I was going to write about my first visit to the ALS Clinic at Johns Hopkins, but this deserves its own post first...

Amanda, the girls and I went down to Huntersville on Saturday to help Ryan celebrate his birthday.

It. Was. Great.

Not only was it good to be around family, but it was good to regress to boyhood for a few hours; playing with toy trains and cars was a lot of fun. I've always found pleasure in watching Cora playing, and watching Ryan and Clare was no different.

Then I beat Martin at Wii golf, and all was right in the world! :P