where you been?

off-hook-phone

Numerous people have asked me, why it’s been so long since I’ve written a new blog post. Well I can say it is not for lack of effort.  I’ve written no less than 15 of these posts since December and opted not to post any of them.  Some were winey, some were downright dark, others just self-indulgent. Frankly, they weren’t an accurate portrayal of how I am actually doing. However, a friend also reminded me that I don’t have to put on any sort of show here with my blog, and I don’t have to post the positive happy go lucky, all the time. While I have been trying to keep this blog a positive and inspirational place for myself, my family, and my friends, there is an entire, other side to my life and my mental well-being that is affected by this disease.  I have bad hours, bad days, bad weeks, and many bad night’s sleep.  Despite all the amazing trips and experiences L and I have had, and are currently planning, there is always the nagging twinge in the back of my mind, that I have a terminal disease. While I have been told, it appears I do not have a rapidly progressing version of ALS, the idea of living on borrowed time, comes on without warning and can be hard to shake.  My moods often swing from happy to frustrated, sad, mad.  It is uncontrollable, and often irrational.  My wife is amazingly understanding, and is there to help me, or let me vent without judgement.  So how am I doing?

Well that’s the million-dollar question.  The short answer is, I’m doing fantastic. I’ll start the story back around the holidays.

While our week off from work between Christmas and New Years was chalk full of driving and travel, and living out of suitcases, it was one of the most memorable holidays I have experienced.  A few days in upstate New York with L’s family, a few days in Connecticut with my family, numerous bottles of scotch and bourbon and countless laughs.  I couldn’t have asked for a better time with our families.  But there’s more.  Oh, so much more.

Tuesday after Christmas, L and I set out on a bucket list adventure.  Left the dogs in Connecticut and hit the long dusty trail to the big city.  Well, we took the train out of New Haven, but we headed to New York City for a few days on a mission to complete two of my bucket list items.

Before I get to the bucket list items I have an honorable mention that very well could’ve been on my list.  We scored a reservation at Nobu 57.  If you’re into sushi and Robert De Niro, this may be the spot for you.  What an amazing restaurant, while you’re there, get tanked and order the $110.00,  bottle of Saki.  Allegedly, I did.  If I don’t remember it though, I think they say, it didn’t happen.  I still think L may be making this one up, I’m not one to go on these winged flights of fancy.  (It was good Saki though)

On to the massive Saki hangover and the single greatest meal I have ever experienced. My all-time favorite celebrity chef Eric Ripert has a restaurant in New York City called Le Bernardin.img_0127 After making our reservation a month in advance, L and I were to sit down to the single most amazing meal of our lives.img_0122  In doing so, I scratched off one of my bucket list experiences. In true, fine-dining fashion, we sat down to an amazing four course French meal, that I will remember for the rest of my life.  Words don’t do it justice.  We ate everything from Oysters, Octopus and Tuna, to Macaroons and Wagyu beef.

If you don’t have this restaurant on your bucket list, add it and go.  The experience is one of a lifetime. That’s not it however, this day would see me scratch off another item on my list. BROADWAY…

A dear friend would make this possible for us, and gifted us two amazing seats to see WICKED on Broadway.  From the 4th row, L and I experienced one of the most amazing shows I have ever seen.  Two double Makers on the rocks later, they curtain called, and I was happier than a pig in shit. The Wizard of Oz has always been my favorite movie, and now Wicked may be my favorite play, (aside from Book of Mormon, but they’re oh, so different)

For now, I’m going to end here, there will be more to follow, including a trip to New Orleans and another bucket list item scratched, The Pacific Ocean.  Our adventures continue, and we are LIVING!!

visits, blood draws and trials, oh my

Visits, trials and blood draws, oh my. Today is and has been quite the day for me here at mgh. I’m sitting in the exam room here at the research center going through consent forms for research trials. The trials aspect of this disease is incredible as there are a few different forms that each have a variety of options to choose from. MGH is not lacking in that aspect.  There are clinical trials and research trials. First the clinical’s. So these are the drugs, man. The exploratory drugs that could potentially save my life, or, potentially turn my skin and eyes blue. (I’ve opted to pass on that one though, hard pass). Currently there are three trials running that could possibly work for me, one of them being the blue man group trial. So I have two that I’m looking into. I will be screening for one today, called np001 so I’ll focus on that. This is an infusion that showed to slow or halt progression in some individuals during the phase 2. Now, these individuals had high levels of baseline neural inflammation. Therefore, this phase of the trial is looking for those individuals with high baseline inflammation. Soooooo, weird but do I sit here and pray for neural inflammation? I’m not sure. It makes sense that if I could slow or halt this thing with an infusion, I want those high levels, but I have to imagine there is a host of other issues involved with neural inflammation. I can’t help but draw a comparison to our recent presidential election. I honestly don’t want either of these things, so which is the lesser of two evils. Do I want the Trump inflammation and the slew of other issues that could potentially go with it. Or the same old thing with Clinton and no clinical trial due to me not having that inflammation. Am I good where I am? Maybe it’s a stretch. I do not know.

Onto research trials. So I’m screening for a bunch of different trials today. These trials won’t necessarily help me out in any way, however they do provide my data for a better understanding of the disease. I feel pretty strongly that if it’s not too time consuming for me I will do everything I can to help. I’m currently enrolled in a research study called eat more. You heard right kids, EAT MORE. The idea is individuals who are a little overweight seem to last a bit longer and do a bit better. So they’re studying the effects of having one on one nutritionist meetings, against logging and tracking food in an app. I randomized into the app group. That means, woohooo. I get an iPad. A shiny new iPad just for me. Everything is coming up T! It’s interesting that for all these years I have been eating clean and healthy in order to lose weight, and now I have to eat the same way, but GAIN weight. When I first found out about my diagnosis, we knew I couldn’t lose weight so we came up with the number 3000. I have been eating 3000 calories a day since July. Do you know how hard it is to eat 3000 calories of healthy organic food? Think of it like this, take your typical breakfast, and then add 500 calories to it. Say you had 2 eggs and two strips of bacon for breakfast. Well take that and then add 3 avocados to that, and now you’ve hit your mark, FOR BREAKFAST. Over all It breaks down to needing to eat about 700 calories a meal, and 700 calories of snacks. Now, if I could go to mcdonalds I could get that easy in one meal. Or the Cheesecake Factory, my god, I could fill my quota for the week. Unfortunately it doesn’t work that way. Ground beef has become my best friend. Well that and cashews. Those little beauties add 180 calories for 20 cashews. I feel like I may soon turn into a cashew. Pretty nuts right?

 I do feel pretty strongly about committing myself to these research trials. They run alongside whatever clinical trial I’m in. To me, the benefits first and foremost are that I get seen at the clinic more. I get to come in and ask questions in person more frequently. That’s important. But also it’s important for me to give back and feel like I’m contributing a little piece to the understanding of this disease. Every little bit helps, just like every vote counts. Even if we do elect high baseline levels of neural inflammation. At least we cast our vote.

   

half full.

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If someone told you roughly, when you were going to die, would you accept this news as a gift, or consider yourself cursed. Would you allow this news to dictate your life negatively, or would you embrace the time you had left and make the absolute most of it?     The idea of facing our own mortality is something for tomorrow. For each and everyone of us, this idea lurks in the depths of our minds, somewhere, and at some time we’ve all thought about it. Had a near death experience, or come close, or slipped and saw our lives flash before our eyes. We’ve stopped quickly in traffic and felt our hearts race. Thought about what would’ve happened. But this thought is fleeting, easily pushed back down into our brains. Something we will face tomorrow. What if you had to face it today?

The grieving process is a mother fucker. But someone doesn’t have to die to feel grief. Grief is a gigantic wave that washes over you, bringing you to the brink of drowning, only to pop you back to the surface, so the sun can warm your tired face. My wife and I have been grieving since July. It lessens. The wave doesn’t get any smaller, but it doesn’t churn as frequently. It’s always there, a rogue wave lurking on the horizon line. Grief can take everything from you, leave you helpless gasping for air that won’t come, reaching for a life jacket that isn’t there… As quickly as that white cap comes it’s gone, and the sea is calm again.

A quick ALS google search brings up some horrific statistics. 70% of patients live 3 years after diagnosis. For me, it’s been 6 months already. So if my math is correct that would leave 2.5 years. Now, obviously this is worse case scenario, but it certainly brings many things into light. Numerous articles would paint the ALS diagnosis as a “death sentence.” We are taking a different approach. We’re painting this as a life sentence. In the darkest of ways this can be considered a gift. A gift that allows me to prioritize whatever time I have left, and figure out exactly what I want to get out of the rest of my life. While it puts it under a bit of a time constraint, I’ve been afforded the opportunity to really look at my future under a microscope, and prioritize the important things that I still want to do with my life. In a sense it has lit a fire under my ass. Time is precious, and mine is limited. So how do I make the most of it?

There is power in a bucket list. There is power in control. At this point my life feels like riding a skateboard. Riding a skateboard down a massive, steep hill, flying fast and feeling the board start to wobble, the faster it goes the larger the wobble becomes, faster and faster until I’m at the brink of flying off the board, unbelievably out of control…. And then there’s the list. The Bucket list that allows me to regain some control, and tap the brakes on my skateboard a little. It gives me the ability to control a small aspect of an uncontrollable future. And there’s relief there, and power there.

It’s strange to be 34 and planning a bucket list. Not only to prioritize the things I want to see and do before my time is up, but it’s important for me to make memories with my loved ones. A minister and friend suggested I work on this bucket list and at first I thought it was dark and sad, and I didn’t want to face that or look at my life in terms of time left. But I thought a little more. He told me as people find out and friends and family find out, they will inevitably say, what can I do? Unfortunately there is nothing that anyone can do. But that’s not really true, there IS something you can do. You can make a memory with with me. You can come fishing with me for stripers, or ride with me in a helicopter. You can join me on my adventure, the adventure of Living.

the luckiest of the unlucky. part 1

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As the odds would have it, it appears I am lucky.  I mean, 2 in every 100,000 come on.  If only this was the lottery I was talking about.  Unfortunately this is not the case, 2 in every 100,000 people have ALS.  However, I AM one of the lucky ones.  I’ve been blessed with a tremendous support team, a loving wife, 2 amazing dogs, supportive jobs, a house. I can’t even begin to count the reasons for which I am blessed, lucky and grateful. I can’t even imagine what the ALS diagnosis looks like without health insurance or a loving partner, or family to lean on, but i know for many, this is reality.

My case may be a little different then most with Lou Gehrig’s disease.  I was fortunate to have friends in “important places.”  A year ago, I noticed cramping in my left hand.  As usual, I chalked that up to dehydration.  I’m invincible.  I’ll just drink 100 ounces of water a day.  And I did.  All winter.  Peeing my brains out for 6 months straight.  It was April now, my wife and I had returned from the most amazing trip of my life to Italy.  (Will post about that later). I decided it was time to hit the gym and burn off those pasta carbs.  I began working out, but something was off.  I couldn’t do the pull ups I used to be able to do, the push ups were more difficult.  What I was noticing was a weakening in my left arm.  Now, I’m fully aware of muscle loss from not working out.  I get that, however not a year and a half before this, I was a crossfitter, capable of doing things with my body I never knew possible, including 100’s of push ups and pull ups and burpees.  This was strange.  Upon further inspection of my left arm, I noticed twitching in my bicep muscle, shoulder and forearm. The twitches were light, only noticeable by looking at my left arm, I couldn’t necessarily feel them.  But again, this was strange.  I called my pcp for a referral to a neurologist in May, while very nice and helpful, I was told I could have an appointment in August.  Yes, August. That was almost 4 months away, just to get a referral.  This was frustrating. Who knows how long it would be for the neurologist appointment.  Here’s where my luck comes into play.
As a nursery school teacher at a cooperative nursery school, we get the pleasure of parent helpers in the classroom with us.  It just so happens that the following day our parent helper was a neurologist at the Lahey Clinic in Burlington, MA.  After a quick conversation on the playground about my predicament with my pcp and a few arm tests, she asked me if I would be willing to go to the Lahey Clinic.  I said of course. A week later I had an appointment with the head neurologist.  He saw me in the evening.  It was June at this point.  We ran through some office tests, and had some conversation.  Nothing to be concerned about as far as I knew.  We scheduled some blood work, an EMG, and an MRI.  All pretty standard I guessed.  At this point, I was convinced I had Parkinson’s disease or Lyme disease.  So I went through all the testing.  I’ll go over the details specifically later on but for now, let’s say the EMG was…. Well not pleasant, and I didn’t know I was claustrophobic until I had an MRI.

Flash forward to July 6, 2016.  I received a call from my doctor saying all the tests were in and he would love to see me again in the office.  And this time he would love to meet my wife as well.  This was interesting and I asked him if “I was in danger,” not sure why I said danger but it really caught me off guard.  We made the appointment for the following afternoon.  July 7th, 2016.  The day I would find out I have ALS.