Monday, September 29, 2014


Our Hospice, the Rockbridge Area Hospice, released a video celebrating 30 years of service. Check it out...

Friday, September 26, 2014

Power of Attorney

I had to sign a new power of attorney today.

Apparently, my previous copy didn't give Amanda broad enough powers. Well, according to one of our insurance companies.

Somewhere between Louise's birth and my diagnosis, I neglected to add Louise as a beneficiary. Amanda sought to rectify my mistake, but was turned down by the insurance company.

The funny thing about completing a new power attorney is that I had sign the documents. Unable to grasp a pen with my hands, I signed the documents with a pen in my mouth!

Monday, September 22, 2014

Organized Chaos

Your Mum bought you the game "Hungry Hungry Hippos."

A predictable cacophony of noise ensued as you both pounded away on the lever on the hippos back. I thought things might descend in to chaos, but you were both so happy to play together.

Cora, after playing, you did your homework at the kitchen counter. It didn't take long to do your homework, so we looked through some schoolwork your teacher sent home. It's fair to say you've had a great start to the school year, since your work was outstanding.

Louise, during a few games, you decided it was more appropriate to feed your hippo by hand. It was adorable and funny, since you would grab the high-scoring yellow ball every time. Your class at daycare is taking a field trip to Boxerwood Gardens tomorrow. You spent some time there during the summer at a half-day camp, but tomorrow will be your first visit with your class...and your first trip on a school bus.

I don't know why such a normal afternoon should make me so happy.  Thank you.

I love you,

Friday, September 19, 2014

Sweet Sixteen

I got word from my friends at Johns Hopkins that I need to spend 16 hours a day hooked up to my breathing machine. This comes in response to a breathing test I took at my local hospital on Tuesday.

My lungs cant hold more than 2.5 liters, and perform at 42% of what they should.

Hold On

I stumbled across this old gem...

Sunday, September 14, 2014

Chasing Waterfalls

Amanda and I took the girls to look at garden features at Springdale Water Gardens today.

We've wanted to build some kind of water feature ever since we moved in, but we've never quite been ready.

The gardens are about 45 minutes away, short enough to make it seem a quick journey, but long enough for the girls to ask "are we there yet?" There were two focal points at the garden center, one is the exhibit waterfall and pond as you drive in, and the other is a big old barn that serves as the showroom for all sorts of water features.

Amanda and I weren't entirely sure what we were looking for. As we walked among pots of varied size and colors looking for inspiration, the girls became distracted by the indoor fish tanks. The owner of the garden center was in the fish tank building giving a seminar on constructing a waterfall, and he assured us he would keep an eye on the girls while we continued our search.

Sure enough, about 10 minutes later, as Amanda and I started forming a good idea of what we wanted, we looked over at the group of adults in the seminar to discover that Louise and Cora had joined their group.

It was a really nice moment to see the girls off exploring their own interests.

The staff at the garden center were very helpful, and took their time to point out various pitfalls we should avoid when we make our water feature.

We eventually left with two happy girls, and the basic components of our future water feature. We've yet to figure out the precise details, but it looks set to be an enjoyable project. Hopefully one the girls will remember for a long time.

Friday, September 12, 2014

Know Go

I've decided not to attend my ALS clinic appointment at Johns Hopkins later this month.

It will be the first clinic appointment I've missed.

In a nutshell; I cant be arsed.

To expand, it's expensive, tiring, and it's not like we go there to get good news. We know how this story ends.

On the down side, we love the folks at Hopkins, so it'll be strange to miss out on that interaction.

Wednesday, September 10, 2014

Ice Cold Thanks

If I had written about the ALS ice bucket challenge eight weeks ago, no one would have a clue as to what I was talking about.

Of course, the awareness and fundraising idea became a viral hit on social networks. There can be no argument that the campaign has been an amazing success. Subjectively, we can see an overwhelming wave of awareness that has grown and grown over the past two months. Objectively, we can point to the funds raised by the ALSA, which exceed $100 million and are still climbing. It has been a joy to watch such a simple idea make such a big difference.

The wonderful thing for me, which mirrors the campaign, is the awareness  I see increasing among my friends and in my community, and the generosity my family has been shown in the past two months.

Every once in a while I get a message from someone asking how they can donate some money to my family. The donation - and every donation - is humbling, uplifting, and emotional to receive. Every time.

I've seen a huge number of ice bucket challenges performed in my honor. They, too, are humbling, uplifting, and emotional to see.

Friends in the UK, some of whom I hadn't spoken to since high school, did the ice bucket challenge in droves.

My cousin, Chris, even completed a 70 mile sponsored bike ride, in the middle of the night, to Brighton.

So here's my ice bucket challenge.

I'd like to dedicate it to Jimmy 'Jinky' Johnstone, the Johnstone family, and particularly James Johnstone. I'd also like to use the video to thank everyone, like the ladies at The Salon, who have done so much to support my family. Thank you.

We've decided to put the money we have received towards a backup electricity generator for our house. We live in the country, and are prone to power cuts. Given the growing list of electrical equipment I rely on, it feels like a sensible investment.

Thank you for making this peace of mind possible, and thank you for raising awareness about ALS.

Monday, September 8, 2014

The District of Columbia

My family and I visited Washington DC for a sightseeing trip in the middle of June this year.

My parents convoyed with us, and took the girls up to DC in their car. Amanda and I were stuck in parent mode for a while, until we realized the absence of the girls in our van meant we could crank up the volume of the music we were listening to...Amanda will tell you that I'm not happy until the music makes the rear-view mirror shake.

We made it in to DC with relative ease, and saw a marine helicopter flying low overhead. We're told by my folks that the girls squealed with delight at the sight of the helicopter, since the president might be inside.
Cora and I  at the base of the Washington Monument

After getting to our hotel, we thought it would be good to go out for a stroll, particularly after spending a few hours in our cars.

It took us ten minutes to make our way to the Washington Monument. The monument's size is quite deceptive. Maybe it's the simple obelisk shape, or that it sits on such an open area of land on the national mall, but it isn't until you get up close and strain to look up at the peak that you appreciate how tall it is. Random fact: it was the tallest building in the world until the Eiffel Tower came along.

I went out for dinner with my parents that night. We ate at Old Ebbitt Grill, and enjoyed a wonderful meal and lots of laughs.

We all had to get spruced up the following morning, as we were lucky enough to have arranged a tour of the White House. I want to thank my VMI Brother Rat, Brandon, for all his help and assistance, and for accompanying us on the tour.

It was surreal to be perusing through the hallways of such an iconic building. That sensation increased every time I took in a portrait, bust, or view of a formal room.

Because I was in a wheelchair, Amanda and I had to use the elevator - escorted by a member of the Secret Service - to go up to the main floor. It turned out to be a stroke of luck; the elevator was in an area that was cordoned off, and not accessible to other people touring that day. But the really fortunate part of our elevator ride is that we got to see some of the scorch marks from when the Brits burned the White House. The blackened marks were two months shy of being 200 years old.
Outside our small place in the city

The tour was amazing. The interior was a wonder to tour, but it was also bizarre to look out of the windows and soak up many priceless views of the grounds.

We grabbed sandwiches for lunch, before heading to the Air and Space museum that afternoon.

Louise soaking up all the Air
and Space Museum has to offer
The entrance to  the Air and Space museum is deceptive. There's a short wait for a security check just inside the entrance. It isn't until you emerge from the security check that you realize the vast expanse of the lobby, and the many amazing artifacts around you: space capsules, the first aircraft to make a transatlantic crossing, the first aircraft to break the sound barrier...the list just keeps going and going. Sadly, the WWII exhibit was closed, so we didn't get to see their P-51 or other period aircraft.

I really need to stop before I enter full geek mode, and bore the socks off you. But you can get an idea of the scale of the collection here.

My brother and his family arrived that afternoon. My wheelchair cab, even though it was booked in advance, was behind schedule, so we used the time to take a quick stroll to the capitol building.

Eventually, we gave up on the wheelchair cab. My parents went back to the hotel with the girls, and my Dad returned to pick us up in our own van.

The following morning, Amanda, the girls, my parents and I went to visit the Lincoln Memorial. The weather was overcast, so we were reprieved from the typical, suffocating DC humidity. We seemed to arrive at the memorial before the morning rush of tourist, so we were able to soak up the sights and have an enjoyable walk without much hassle.

After Lincoln, we walked the length of the reflecting pool before visiting the WWII memorial. I've visited the WWII twice. Each time there has been at least one group of veterans visiting the memorial. Their presence always removes that abstract lens through which I would otherwise view the memorial. I'm glad to see them. Their presence removes any facade of celebrating the war, and lays bare the human cost of war.
I'd never seen the Jefferson Memorial, and we wanted to rectify that. In all honesty, while we had a pleasant walk, it was longer than we expected. We walked through the Lincoln Memorial, but sat down in the Jefferson Memorial!

The Jefferson was the last stop on our walk. Having been let down by a cab the previous day, my Dad took a quick cab ride back and returned to pick us up in our van.

That afternoon we met my brother and his family at the Natural History Museum.

A distracting odor 
The museum is huge, so we had to whittle down all of the exhibits into a shorter list we could manage in a couple of hours. It really was fascinating to go through those exhibits, and particularly enjoyable with the girls experiencing the museum with their cousins. Even in a short space of time, we were able to see dinosaur bones, the insect exhibit, and the mineral exhibit along with the Hope Diamond.

The following day, we were all excited to go to the National Zoo. Even though by its nature, a zoo is a collection of enclosures, the National Zoo is free to enter. So there were no noticeable entry gates. That must be the reason I was scared shitless when we passed by a fence and there, walking towards me, was the biggest wolf I've ever seen.

Before we knew it, we were checking out pandas, elephants, apes and gorillas, tigers, and a huge assortment of other hairy animals. To its credit, I found the Zoo to be remarkably accessible in my wheelchair.

We grabbed lunch at a zoo restaurant before winding our way back to the cars, and back to the hotel. That evening, the girls and their cousins spent some quality time in the hotel pool. That night, Friday, we enjoyed a family dinner at Hamilton's. If you ever visit D.C., Old Ebbitt Grill and Hamilton's have an awesome menu and an awesome atmosphere. The following morning, my parents, brother, and his family were heading back to Charlotte. Since that Sunday was Father's Day, it was the perfect opportunity to celebrate Father's Day.

The Charlotte Conways left on Saturday morning; it was a wonderful whirlwind visit. Since we had some time before we had to check out, we took in one more attraction, the National Archives. 

We got there shortly after the Archive opened, but there was already a line of people waiting to get in that stretched across the front of the building. I didn't see any signage indicating the accessibility of the entrance, so I went up to a quieter door to inquire. The security guard surprised me by saying that we could quickly use his side door. It was a really kind gesture. We skipped to the front of security, and made our way to the rotunda. In no time at all, we were looking at the original Declaration of Independence, Constitution, and Bill of Rights. The documents were dimly lit and in the rotunda, which was dimly lit, the pieces of paper had an almost spooky glow about them.

It wasn't until we were leaving the archive that we noticed the exhibit by the entrance/exit. They had a 13th century copy of the Magna Carta on display. 

The visit to the Archive was our last excursion in D.C. We quickly loaded up the mini van and set off for home. 

Given how tired we all were, it was nice to have a trouble free trip home. 

Friday, September 5, 2014

Falling Down

Even before ALS, one of my knees would buckle forward every once in a while. At that time I had the strength and reflexes to stop my knee from moving further forward after just the tiniest movement forward.

Not so much anymore.
A hoyer lift. So much fun.

My right knee buckled while Amanda was helping me transfer from one seat to another this morning. Not only did my reflexes let me down - my knee had moved forward about six inches before I knew what was happening - but I also lacked the strength to correct the issue.

To her credit, Amanda held on, and gently let me down to the ground (I weigh 200lbs / 14 stones).

It took some maneuvering and the use of my hoyer lift to rectify the problem...another day in the life of an ALS patient.