Tuesday, October 30, 2012

ALS MND News Digest

Neuraltus Pharmaceuticals Announces Phase 2 Clinical Results for NP001 in ...
NEWS.GNOM.ES
Neuraltus Pharmaceuticals Announces Phase 2 Clinical Results for NP001 in Patients with Amyotrophic Lateral Sclerosis (ALS). PALO ALTO, Calif., Oct. 30, 2012 /NEWS.GNOM.ES/ – Neuraltus Pharmaceuticals, a private biopharmaceutical company ...
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ALS Treatment Target Found With Help From Yeast
Medical News Today
With the help of baker's yeast, a tiny one-celled organism, scientists in the US say they have found a "chink in the armor" of the currently incurable disease Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. They suggest their ...
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Breathe

James May on cello?

Thursday, October 25, 2012

The Help Conundrum


I know that many people focus on the effects that my illness has on me. From my perspective, I see those effects, and the impact it has on those around me.

In the space of a year I've gone from diagnosis to fairly severe weakness in my arms. Even a straightforward sense of balance is off. And various tasks that were routine now present obstacles.

That's why it's easy to understand the urge people have the help me: somebody you care about is struggling, you try to help.

I do appreciate it when people try to help me, but my demeanor is often the opposite.

Assistance is always well-intentioned, heartfelt, and caring. Assistance usually lightens my load, reduces my stress levels, and helps me reduce the amount of time I spend doing a specific task.


The obvious question is why do I get so irritable when people try to help me?

The answer to that question pinpoints one of the worst aspects of a ALS.

As much as I require help, and is much as I may appreciate help, I simply want to do what I can while I can.

In its purest form, the desire to do things for myself is one of the few ways I can fight ALS. If ALS is to rob me of my ability to control my muscles, my mindset is to fight it as hard as I can and for as long as I can.

As twisted as it sounds, in my mind, accepting help and assistance means I'm taking a time-out in the fight against ALS. I owe myself and those I care about a better fight than that.

The catch is that watching me struggle -- watching me fight -- is a hard thing for my friends and family to watch.

Therefore, the conundrum is to watch painfully as I fight, or to help me and deprive me of the fight.

It would be fortunate if everyone took pride in my fight, or I could see assistance as a boost to my fight...

...but it's hard to believe that either change in perspective will come quickly or easily, or be limited to purely positive thoughts.

In short, I'm not the only victim of my illness. That's the real kicker.

Wednesday, October 24, 2012

Sneak Peek

New tshirts should be available any day now...

...they're looking good...


Friday, October 19, 2012

Scotland 2.0

Amanda and I left for Scotland on August 29th. We arrived early on the morning of August 30th.

The most remarkable thing about our departure had to be the fact that Cora and Louise weren't with us. Instead, they spent the week with Nana and Pop in Charlotte. Given that our plans included driving across Scotland, late nights, and more travel, taking the girls along didn't seem like the right thing to do.

Inveraray
The early morning air at Glasgow airport was quite chilly. Amanda and I picked up our rental car, threw our bags in the back, and took off with the simple goal of driving north. We knew that jet lag would catch up with us, so our aim was to avoid losing travel time to the inevitable nap.

Our first port of call was Inveraray, on the western shore of Loch Fyne. We had already been driving quite some time, and, honestly,we were very hungry! Thankfully I didn't have to wait long for some of those comfort foods I grew up with: Amanda and I enjoyed a sausage roll, and a black pudding roll. It was everything I dreamed it would be!

We took the opportunity to stretch our legs around Inveraray, and took in the most Scottish of spectacles; two different types of weather happening at the same time. The sun was beating down on us on the shore, while a downpour drifted across the loch.

Fed and happy we decided to make our way to Oban. We made our way safely into town, and did our best to find a reputable B&B. We found a wonderful place on the hillside over Oban, but we had an hour or two to kill before we could get into our room. With jet lag starting to kick in, it probably wasn't a good idea to sit out in the fresh sea air. We did what any sane person would do; we made our way to the nearest fish and chip shop!
Oban

We finally got into our room at 2:30 in the afternoon, and enjoyed a much-needed nap.

The walk down for dinner
We fought the urge to fall asleep for the night -- at 3:00 in the afternoon -- and woke in time to go out for dinner. We had a particularly enjoyable walk down to the restaurant, through the most picturesque of narrow, winding, and stone-lined lanes. We managed to squeak a table at Room 9, which I believe is named after the number of occupants it can hold. In all seriousness, it was a lovely little restaurant with some great food.

Fed and happy (there is a pattern emerging here), we strolled down the last few hundred yards to the shore. As some of the last beams of light cast up onto some streaking clouds, we were greeted with another awesome view.
Without expecting it, we stumbled into a wonderful, romantic evening.

The following morning, we narrowly avoided being the last couple down for breakfast. Interestingly, we appeared to be the last remaining people from an English-speaking country in the B&B. Amanda and I were both surprised to discover that everyone at the surrounding tables was from Germany.


Fed and happy, we left Oban after breakfast and again turned north.

We had an enjoyable journey. As we passed through Fort William we decided to stop at the Ben Nevis cable car station. Lasting over five minutes, the journey and the cable car didn't even take us to the top of the mountain. Still, it gave us a very good understanding of how demanding the ascent of Ben Nevis must've been for our friends.

Tea, anyone?
As we traveled further north we stopped at the Glengarry Castle Hotel on the banks of Loch Oich, and enjoyed a picturesque setting for afternoon tea.

Fed and happy, we again departed North, and enjoyed some spectacular stretches of road on our way to Dornie. On the bank of Loch Duich, Dornie is perhaps best-known for the adjacent Eilean Donan Castle. Amanda and I toured the castle, before pausing on the way out to pose for a web cam and wave at Cora, who was watching with Nana in Charlotte.

We buzzed around Dornie in search of lodging for the night. The hotel had the ingrained smell of cigarette smoke, the cozy B&B was full, and we thought we were out of luck. Thankfully, we found a wonderful room in what was literally the last house in Dornie.

The gastronomical aspect of our adventure continued at the pub in Dornie. The nondescript fa├žade of the pub belied the amazing food they produced inside.

Amanda and I left the pub immediately after we ate to return to the castle, so I could set up for some time lapse photography.


The following morning we left for Loch Ness. Our goal was to reach Urquhart Castle, and spend some time exploring.

Windswept at Loch Ness
As with Dornie, the last time I visited Loch Ness was with my dad when I was a teenager. There were many times on the trip when I reflected upon the last time I had visited; the car we drove, the music we listened to, the weather, the scenery, and the adventure.

I seem to find visiting castles a very moving experience. There's something about these structures, where history is ingrained on each stone...it's inescapably inspiring.

We made our way into Drumnadrochit and found a decent place for lunch.

Fed and happy, we then turned east and made our way to Newtonmore. Situated it what seems to be the center of Scotland, Newtonmore is a fairly typical highland village.

You won't be surprised to hear that our first stop was at the local pub. We sipped some beers while trying to figure out our options for lodgings for the night. After some searching -- and calling folks in Charlotte for suggestions -- we took the easiest option, and spent the night in the hotel connected to the pub.

The following morning we scoffed another fried breakfast before -- fed and happy -- leaving on a lengthy drive south to Glasgow. I was probably too eager to make good time back to Glasgow. We passed through some beautiful countryside, but it all seems a little blurry now.

Thankfully, we did pause outside Newtonmore to photograph a gorgeous waterfall.

We arrived in Glasgow, dropped off the rental car, and took a quick bus ride into Glasgow. After a long day on the road, the 15 minutes of walking with our luggage to find the hotel was less than ideal. Still, the Malmaison was a very nice hotel, with a great location. Amanda and I took the opportunity to lay down, and get some much-needed rest.

That evening, my cousin Matthew drove into Glasgow to bring Amanda and I back to the Nicolson household. It was wonderful to spend an evening with the Nicolson family. Maureen and Paul, as usual, were extremely hospitable. Matthew, Stephen, and Katie were great fun. We enjoyed a lovely family meal, and some quality time with the Nicolsons. We had a lovely visit with my Aunt Babs and Uncle Al, and a great visit from Trudy. We also got to witness the Nicholson Court of arbitration, as my three cousins all vied for various must-have items. There is nothing that can replicate young adults trying to convince their parents that they really need item X, and it's in their parents own interests to help them get the item.

Fed and happy, Maureen drove Amanda and I back into town. Amanda and I collapsed into bed, eager for some much-needed rest. Rest that we would need in order to prepare for the following day.

With no plans for Friday morning, Amanda and I slept in. As we slept, the first members of what would turn out to be a large group of high school friends were arriving in Glasgow. Since my friends chose to rendezvous elsewhere before coming to the hotel, it was close to 11 AM by the time they all arrived at our hotel.

There were no dissenting voices when it was suggested that we go down to the hotel bar. Those are the first drinks in what would turn out to be a marathon night on the town. Daniel, Steve, Martin, Alan, Stuart, Hill, and Pip took little time to get the proceedings into full swing.

A few rounds of drinks were consumed before we headed out to find a livelier venue for lunch. Another friend, Scott, joined us, and was quick to drink at the same pace as everyone else. Once again, copious amounts of refreshing liquid were consumed. Everyone had a great time catching up and sharing their news, between games of pool and lighthearted insults.

There was an interlude in the day's proceedings, so my friends could drop off their bags at their hotel. I'm told that Stuart Hill's description of the premier inn as, "looking like someone had already broken in," was pretty accurate!

We reconvened in a cavernous bar at The Corinthian Club early in the evening. Another surprises waiting for me, as another old friend, Wayne, joined the ever-growing posse of friends. I would hardly describe the amount of drinking as restrained earlier in the day, but the guys were certainly taking it to Olympic levels now. Several bottles of champagne were seemingly consumed quicker than they could be purchased!

I was told that we had some pending dinner reservations, so we left and headed for the Royal Exchange Square. After a few moments finding our bearings, we made our way up to the Grill Room. As we entered the building I was greeted with yet another surprise; another friend, Oliver, joined us.

Intent on living like rock stars, my friend showed little restraint when it came to ordering their food.

As it turns out, the beef served that evening was phenomenal.

Fed and happy, we headed out to some nightclubs. I hope you'll forgive me if I don't go into too much detail about the rest of the night. However, I will say that any time you're buying an entire bottle of vodka from the nightclub bar at 2 AM, you know your friends came to party!

Amanda and I said there farewells to my friends at 330 in the morning, and headed back to our hotel via a kabab shop.

Even as the best of times you know that when you climb into bed at 4 AM you really have no chance of getting a good sleep. Given that Amanda and I had an early start following day, I think we both went to sleep resigned to the fact that Saturday morning be a little rough...

...Saturday arrived as if Friday never ended. We threw our belongings back into our bags and left the hotel for Celtic Park. It would prove to be our last cab ride in Scotland. There's something inherently funny about cabdrivers in Scotland. They either want to make fun of you, or have a laugh with you. We arrived at Celtic Park, and were greeted by our friends Neil and Jill. In spite of the late night, we made it to the Stadium with enough time to set fire to our credit card in the Celtic superstore.

Celtic were playing Aberdeen that day, which make things all the more interesting since Neil is a big Aberdeen fan.

We made our way to what, for me, was the familiar sight of the Walfrid restaurant for a pregame meal. In all honesty, it probably took me most of our time at the table to recover from the previous night. Fed and happy, we left our table as kickoff approached to soak up the atmosphere and enjoy the spectacle of Celtic unveiling the championship flag.

We enjoyed some halftime refreshments before heading back outside. Much to Neil's dismay -- and that of all the other Aberdeen fans in the stadium -- the Aberdeen goalkeeper did a perfect impersonation of a leaping salmon. Unfortunately, he performed this acrobatic feat over a weak Celtic shot. The game finished 1-0.

We enjoyed a light meal after the game before heading back to Neil and Jill's house in the borders. After a long 36 hours for all four of us, I think we were all eager to get some sleep, but we couldn't avoid the urge to stay up and catch up on each other's news.

The following day we went on a lovely excursion with Neil and Jill. We stopped for another lovely fried breakfast on our way to visit Walter and Gail. When we arrived we discovered that Neil's dad, Rob, had also stopped in to visit Walter and Gail. Since it had been almost 10 months since we last saw everyone at Neil and Jill's wedding, it was wonderful to see everyone again. It was also awe-inspiring to see all the work Walter and Gail had put in to pulling together The Conway Open.

Neil and Jill took us for a quick spin to say hello to Dolly, and we also got to see where Neil and Jill plan on building their home. It was great to hear Neil and Jill talk about their plans.
Dolly is the one in the middle!

We went back home and cleaned up before heading out for dinner. Neil and Jill took Amanda and I out for a lovely Chinese meal. Over the course of the trip I seemed to become more and more acquainted with the comfort foods of my youth...and I had no complaints!

The following day was our last full day in Scotland. We had a scrumptious breakfast with Neil and Jill on their patio, before cleaning up and heading out on another excursion.
Our first stop was at a location known as Scott's View. With rolling hills in the foreground, the Eildons in the background, and a river meandering into the distance it's not hard to see why so many people visit.

After visiting Scott's View, we visited Melrose.

We took the opportunity to shop for a few gifts before turning our attention to Melrose Abbey. As with many other castles, ruins, and views we had taken on our trip, pacing around the Abbey was breathtaking. All four of us climbed the winding staircase to the top of the tower, and soaked up the view.

We descended the tower and toured the rest of the Abbey. Before leaving, there was one more spot I wanted to visit; the place in the Abbey grounds where legend says that the heart of Robert the Bruce is buried. Relatively tranquil after a passing downpour, it was rather surreal to pose for a picture as I had done as a teenager visiting the same spot with my dad.

With our flight back to the states leaving the following morning, this became our last opportunity to venture out with Neil and Jill. We seized the opportunity, and went out for an Indian meal. I think it's safe to say that this meal represented the completion of the gastronomical side of our trip!

Fed and happy, we returned home with Neil and Jill. Given our early flight the following morning, there was little choice than to climb into bed.

The drive to Glasgow airport the following morning was fairly quiet. I think it's fair to say that we were all tired. Neil and Jill were concentrating on getting us to the airport on time, while Amanda and I were reflecting on just how wonderful the trip had been.

Two amazing footballers, and Charlie Mulgrew
We said our farewells to Neil and Jill and turned to the terminal in very solemn moods...as fate would have it, the entire Celtic team arrived at the airport a few moments behind us. As if it couldn't get any better, they all checked in right next to us as well! It was great to see the team up close. Better than that, it was a great way to lift our mood, and had us leaving Scotland with smiles on our faces.

I can't thank everyone enough for such a memorable trip.

Wednesday, October 10, 2012

One Year

He squeezed the small muscle between my thumb and index finger, and I knew I was in trouble.

She knew I was in trouble when a close view of my back showed numerous muscles twitching.

Still, we expected a lot of blood tests before any diagnosis...

"We'll conduct a wide range of blood work and tests, but I can say with some certainty that you have Amyotrophic Lateral Sclerosis."
He was Dr. Rothstein, and she was Amanda.

A year ago on this date, doctors at Johns Hopkins confirmed my diagnosis.

An emotional few days followed. The remainder of that day was spent making calls to my family and making the long journey home.

It was late by the time we got back to Lexington.

The past year has been hectic, to say the least: Neil and Jill's wedding, VMI alumni soccer, friends helping with firewood, taking Amanda to Ring Figure, The Conway Cup, a trip to Scotland, a trip to Ft. Benning to play in an Abrams Tank, skydiving, driving a Bugatti Veyron, getting a service dog, a  trip to Myrtle Beach, celebrating 10 years of marriage with Amanda in Aruba, a trip to Topsail Beach, another trip to Scotland...

...and now retirement: October 31st will be my last day of work.