Before you mail us your Christmas cards this year, shoot me a text or an email and I will send you our new address. We moved to Atlanta this spring. It was somewhat out of the blue, but in hindsight it was probably for the best.

In 2015 we realized that we needed to move out of our current house because it was two levels and I was having a harder and harder time with the stairs. We sat down realizing that moving would only become more difficult for us as I progressed, so we tried to figure out where we wanted to be long-term. We decided we were very happy with our lives in South Carolina, so we found a house in Columbia, totally renovated it, made sure it was completely accessible, and made it our home. As things typically play out, then about a week after moving in,  the company Cara worked for was bought. Over the next year her job got crazier and crazier and it was apparent that she needed to get out. Unfortunately, she was working at the only place in town that really did what she wanted to do. So we reevaluated our choices, she began looking for jobs in cities that we would consider moving to, and now we are in Atlanta.
Timing wise, the move wasn’t so bad. Mary Adair got to finish up first grade at a new school, and wasn’t yet too tied to her old one. James will start kindergarten in the fall, so he was already going to be at a different school from a bunch of his buddies. It meant that after a disappointing 4K year, he got a couple of months of Papa camp to get ready for the fall. I was already scheduled to go out on disability from the University of South Carolina. So other than leaving a bunch of really good friends, a routine we were super comfortable with, a city and a state that felt like home, and a house we had put a lot of effort into, it wasn’t such a big deal. But moving is never fun.

Mentally the transition was sort of complicated for me. It was hard to separate what the move would do to me versus what my progression would have done to me no matter where we lived. It was convenient to put on the calendar that once we moved to Atlanta, I would no longer drive. I had been saying I would drive for two more months for about three years, but the time had come. Mentally though it was easy to blame moving to Atlanta for not being able to drive. I was already scheduled to leave my job and stop going into my office, but the dropdead date was determined by the move. I am typically able to be a somewhat rational person, so whenever I focused on this, I tried to stop myself and realize these changes were coming no matter what. But it wasn’t always easy.

There was this weird abrupt transition. When Cara started her job in Atlanta, me and the kids were still in Columbia while some work was done on our new house. One day, the three of us woke alone together in the old house. I drove us to Dunkin’ Donuts. We had breakfast. I drove them to school. I went to my office. I drove and picked them up. The three of us drove to the run down hibachi restaurant around the corner from our house. And then we called it the night. The next day, we moved and in Atlanta I didn’t drive.

There were  a million things to do around the house, but I couldn’t really do them. Things that I did 18 months before in our last move, were now out of the question. Now they all fall on Cara. My job was to meet with the handyman and a handful of contractors coming in and out of the house, but even that got taxing. I got tired and didn’t notice a rug was lifted up a little bit, and I tripped, my head bouncing off the hardwood floor like a billiard ball that jumped off the table. I tried to take a shower in the bathroom we had just torn up to make accessible, and I slipped getting out. Hell, I read too many books in a row on my phone and all the swiping caused my left thumb to twitch for four days straight, leaving me dependent on my right middle finger for placing the amazon orders and operating the remote. Going to new places is complicated and when you move everything is new. What is the entrance like? How crowded will it be? Do I need the scooter even if we are only going to be there for five minutes? Will there be any steps at all, making it a no go?

After living with this disease for four years, I am used to making adjustments. It just was a lot all at once. But after a couple of months, it is starting to feel like home again. I am used to the new house and intuitively know where the rugs are and where the furniture is. If the kids pick up their toys (if), I can comfortably walk around. I found a spot on the new couch where I can wedge myself down far enough so I can rest my neck. We figured out a solution to help me get out of the pool, so I still have that activity with the kids. We tested out Marta, and if someone drops us off at the station, the kids and I can get ourselves to the aquarium and have adventures. I “walked” them to camp up the street this morning. After going to two Atlanta United matches (Thanks Jonathan and Arod!) All four of us are totally hooked. Mary Adair takes it almost as seriously as her papa. Almost. Once they move into their new stadium, we have ADA season tickets lined up. Mary Adair got Sorry and Trouble for her birthday and we have been having fun battling it out. Card games don’t really work for me, but if one of them pops the bubble in Trouble, or flips the cards in Sorry, we are good to go. We hired an assistant who helps me shower, get dressed, and run errands a couple of days a week. I had my first appointment at the Emory ALS clinic and am excited to be close to the therapists. Charlotte was great, but it is harder to have follow-up appointments when it is 90 minutes away. The occupational therapist was eager to have me come into the office to show me all the gadgets they have for interacting with my phone or computer as my left thumb gives out for good. I went back and had a two hour visit with the physical therapist testing out all of the different wheelchairs and putting in my order.

And most importantly the big things have gone smoothly. After her very first day at her new school, Mary Adair got off the bus beaming and every morning jumped out of bed at 6:20 ready to head off. James and I had a great couple of months of Papa camp, powering through workbooks, reading stories, and exploring the neighborhood. He has met a bunch of kids who will be rising kindergartners with him in the fall. Cara likes her new job. Her mom moved down here and is a huge help keeping the trains running on time.

Moving is always awful and with ALS is even more so.  Adjustments are hard, and a bunch all at once are harder. But other than missing some really good folks in South Carolina (and that banged up hibachi place), I think we have gotten it right.

This summer in Columbia has been absurdly hot. Columbia comes by its tagline of “Famously Hot” honestly. When it’s 100° every day, you really can’t go outside unless you are getting in a pool. Just about every day during the week, I pick the kids up early in the afternoon and we go home and swim. They took lessons at the beginning of the summer and after spending hours in the pool they have both become fish! They dive for toys, they swim back and forth, they jump in over and over again.  But more than just being an activity for them though, it’s an activity for us. In the pool I don’t have to worry about falling over or be concerned with one of them running under my feet.  We can all act silly together.

I can still walk around okay day to day, but it takes all of my concentration. I am constantly staring at the ground in front of me making sure there is nothing that is going to grab hold of one of my toes. In the back of my mind I am always aware of the consequences  of one misstep.  Walking around the yard, they know to give me space. They can run around, as long as they keep their distance. Even when I pick up James at school, I know to brace myself so that when he runs over to give me a hug he doesn’t knock me over. But in the pool we don’t have to worry about that. I can’t really use my arms to swim, but can keep up with them enough just kicking my legs. They can climb on me. I can give Mary Adair bucking bronco rides. James can give me a big bear hug and then we can jump up and down in the deep end, springing off the bottom of the pool.  In the water, I can pick them up and wrap my arms around them.

There are also nice little discrete accomplishments that they can achieve in the pool. Last summer, Mary Adair was growing more confident swimming but still needed to grab the wall every few feet. I encouraged her to try and go a little bit further and a little bit further without holding on. Finally I convinced her that she might be able to swim the whole way across. After doing it, she was so proud. I  didn’t really feel pride in her accomplishment, swimming across the pool isn’t the most impressive thing she has done, but I felt joy. Joy in seeing her pride in herself. The same way I felt joy this school year at how proud she was of her reading or of being able to solve little math problems. James realized he could swim without his floaty a month or so ago and I got him to try swimming across the pool. When he did it, mostly I had to fight to not laugh, seeing him climb up the steps and stand on the edge of the pool Ronaldo-esque, shirt off, hands on his hips, with his chest puffed out. Like his dad, he doesn’t really hide his pride. I could hardly hide my joy.

Mostly, the pool has been a place this summer where we can interact somewhat “normally”. There are plenty of other things that we do together and will continue to do together even as I become more limited physically. The simple conversations we have alone in the car on the way to school are a treat that we will eventually have to give up, but I know there will be something else we find to share. For now though, even without being able to throw them across the pool, or being able to do the craziest dives, playing in the pool is still something we can do together. And at least for the summer of 2016, that’s pretty special.

Recently, a number of close friends have reached out to me and asked how I am doing. People who I love and respect and do not see nearly often enough. People for whom a simple, “I am doing great. How are you?” does not do justice to how I feel for them or to what they are really asking. But I find that is hard to put into words how I AM doing. It is not that I have any hesitation sharing, it’s more that I have a hard time figuring out what the right perspective is for an email. It’s complicated.

In so many ways, I am doing great. That is the honest answer. I have two happy, healthy and silly kids. Mary Adair loves kindergarten and all things learning. She is in ballet and skips around the house doing all sorts of poses and routines. When we were decorating the Christmas tree, James chucked one of my glass balls across the room shattering it.  Without prompting, she wrote on her Christmas list (that she was so proud to do all by herself) that she wanted Santa to bring her an ornament so that she could give it to me. Santa obliged by bringing her a “World’s Best Papa” ornament. She (and Santa) are pretty great.

James loves superheroes and all his stuffed animals. He probably sleeps with 20 stuffed animals and can give you a long winded back story on each of them and their families. Cara’s mom gave him a set of tools for Christmas and my parents just brought him my old workbench and he loves pretending to be a working man and he loves giving his Papa snuggles. I am involved with a bunch of different ALS projects and am still happy at South Carolina. Cara likes her job and we are all getting settled into our new house.

Almost 3 years after my diagnosis, my progression continues to be slow.  Compared to how most folks with ALS typically do, I am still way out on the good side of the curve health-wise. Three years in, I can still walk, talk, breathe, swallow, etc. If there was an ALS basketball team, I’d probably be a first round pick (my game in high school was strong to quite strong. What I lacked in height and skill I more than made up for in fouls.)  In so many ways, “great!” is the honest answer.

But to friends outside of the ALS community, that still doesn’t quite capture everything that is going on. It’s complicated. I am so very thankful that I am doing much better than we could have hoped for a couple of years ago. That’s just not to say that my progression doesn’t continue. The other day at the zoo Mary Adair asked me how strong elephants were. I told her they were stronger than 20 people and she responded, “20 strong people or 20 people like you?”

I now need her to help me get shirts and socks on and off. I have grown a beard because shaving is exhausting. I am in a constant search for the ideal pair of pants with an elastic waistband. I have a sweet pair of puffy Velcro sneakers that I wear with my orthotics. Yes Matt Bellina, I am quickly becoming a beer swilling hobo.

I can’t cut my own food. If we are going somewhere where we will be on our feet, I will either take my scooter (think rascal not razor) or wear my leg braces. I am still driving, but may have to give that up in a few months. My breathing and swallowing are still normal, but my speech is starting to be affected. If I speak for an extended period of time, it gets harder and harder. I am in the process of “banking” my voice, which involves sitting at the computer and repeating 1600 sentences. This way I will have phrases recorded and even will have a computer generated synthetic voice based on my recordings whenever I need it. Most of the sentences are pulled from the Wizard of Oz or Little Women, but every now and then they’ll be a phrase like “I have ALS and this machine speaks for me.”  I am doing great, but this is the reality of what I am facing. This is the reality of what Cara is facing. This is what Mary Adair and James are facing.

Cara is constantly running around like crazy trying to keep our family going. Anything that’s needs to get done is on her. We continue to add more help around the house, but she still is taking out the trash, fixing meals, putting together flatpack furniture, wiring light fixtures, making liquor drinks, etc.

So yes, it is complicated and it is not easy for any of us. How do we look at it? In general, we take my health as a matter of fact and in many ways it doesn’t affect how we are “doing”. 

Great new house. Weekly trips to the zoo. Two crazy kids. Trip to Disney World at the end of the month. A wife I love more today than 10 years ago when I proposed. 

I am doing great, how are you?

 
While the awareness around ALS has changed over the past year, the urgent need to find a cure has not. Every day I see friends pass away from this disease. Kids lose parents. Husbands lose wives. Parents lose children. I see friends who a year later can no longer walk. Can no longer speak. Can no longer breathe. I feel my own body breaking down. The other night I dozed off on the sofa and when I woke up the first thing that caught my eye was a school picture of Mary Adair and James. Arm and arm on a bench, smiling, excited to take on the world together. I just laid there a while looking at it, smiling back at them, but then when I struggled to generate enough momentum to sit myself up, all I could think of was what else they were going to have to face together. Why do these two amazing, happy-go-lucky kids have to face this situation? Same for their mom. There are things I can come to grips with with ALS, and there are things I will never be able to.    

The need to find a cure, the need for research dollars is still as real now as it was a year ago. Funds change what is possible. They change how fast we can push the search for a cure.

I hope you will join Sarah Coglianese’s #whatwouldyougive campaign benefiting ALS Therapy Development Institute (https://www.classy.org/events/whatwouldyougive/e82638). If you are friends with me on Facebook, you know how incredible she is. Two years ago Cara and I loved getting to meet her and Rob at ALS.net’s gala and I selfishly need a cure to be found so we can be friends for a long, long time. What else will I do at work if I don’t have her blog to read?
  
 
Her campaign is off to an incredible start. For one day give up an ability that those of us living with ALS have to do without. Rely on someone else to drive you around, to cook for you, to cut your food, to get you dressed, or to brush your teeth. Use a text to speech app on your phone to communicate. If you don’t want to impose on those around you, then act as a caregiver (cALS) and be at someone’s beckon call. Serve them all their meals. Clean up after them. Do their chores. Watch them every minute to make sure they can still breathe. #whatwouldyougive for a loved one to avoid this fate?Sign up at https://www.classy.org/events/whatwouldyougive/e82638 and get your friends to support you. 

However you wish to do it. support families living with ALS. Support research to end this disease. Support ALS.net.
 

It is now almost 2 years since I was diagnosed. All in all, my progression continues to be relatively slow. I am almost embarrassed to talk about many of my symptoms given what some of my friends are going through. I can still drive, get dressed, and feed myself. I can still do most things I need to do for myself in my day to day life. However, each of these things is getting more and more difficult. They have moved from being harder than they should be, to hard. Showering and drying off and getting dressed is a tiring proposition, so I don’t do it that often. Just ask my wife. At this point we can see that I won’t be able to do some of these for too much longer. Driving the kids to school, taking them to the zoo on my own, this may be the year I have to give these things up. Not being able to drive is obviously scary because of what it means to my freedom and the time I get alone with the kids, but it’s more than that. It also takes away one of the ways I can still contribute to keeping the trains moving on time for our family.

For example, we have our house on the market right now. It’s not the easiest thing to keep the house in “showing” condition with crazies running around with toys galore. So while we typically keep the house in pretty good shape, it’s a scramble when someone calls and wants to see it. The most efficient way to clean up is for me to take the kids and get out of Dodge. Then Cara’s left to actually get things done. This has been our strategy for lots of things around the house. I disappear with the kids, and she works. Obviously, this isn’t an equitable division of labor, but it has become the unfair default. When I can no longer drive, we will have to change the dynamics once again.

So in many ways, this year is going to be about logistics. What do we have to do to keep our heads above water? Steve Gleason is famous for saying that given where medicine is right now for ALS, “Technology is the cure”. I can see that day coming, but for us right now, logistics is the cure. Figuring out the hired help we need, how to get it consistently, and how to make sure everything doesn’t just fall on Cara. How do we make our daily lives manageable enough so that we can focus on other things?

If the kids are fed, laundry is done, and everyone gets a bath at least once a week, then we are winning. Then days are again about doing puzzles and reading stories and playing in the yard and going to ballet and getting the kids down and having a moment together of peace and quiet on the couch. Then physical limitations are just annoyances. These aren’t insurmountable tasks, but ones that need to get done.

Once we accomplish them, then I know we will spend another year making incredible memories.  Like the afternoon in the fall when we had our family pictures taken and the kids somehow acted perfectly. Afterwards we noticed a brewpub at the edge of a pond in the same complex. So we sat on the dock in the sun, the kids feeding the blue gills and turtles and Cara and I enjoying a beer, laughing, waiting for one of the kids to fall in, and absolutely amazed when neither did. Memories like these:

Once we figure out the logistics, my third year with this disease will be remembered as the one in which we find a cure!

Cara and I spent this past weekend up in Boston visiting ALS Therapy Development Institute. ALS TDI is a nonprofit biotech solely focused on finding a treatment for ALS. It was started by a patient and his family and continues to be closely aligned with patients, having a patient as the chairman, and family members of patients making up the majority of the board seats. The funds we raised this summer from our event in New York went to TDI and Cara and I continue to strongly believe in their mission and team.

On Thursday, TDI hosted a Leadership Summit. They had presentations from a number of scientists and a panel focused more on the business side of drug development. Then Saturday night was their annual gala. And on Monday, I got to tour the lab and gave my samples for their Precision Medicine Program.

This is a program that got accelerated by an influx of funds this summer. They originally planned to collect data from 25 patients, but now are enrolling hundreds. On Monday alone, they had six patients in. They took blood and a skin samples from me to be used to map my genome and to grow stem cells. Then they will test 50,000 drugs against each of our stem cells to try to see if they can find subgroups of responders. One of the most difficult things about this disease is its heterogeneity. Patients differ in their age at onset, the location of their onset, their progression, etc… So it seems crazy to think that some drug will affect everyone the same, but that’s how most traditional trials are set up. This program will be able to move somewhat in reverse, first identify who responds and then look for commonalities in patient’s backgrounds or genetics. I also get to wear accelerometers that will track my movements so they can look back over time and see what influences progression. (Right now the devices are kind of distracting as I keep waiting for them to start flashing to let me know my table is ready.) TDI is using technology that has only recently become feasible on a large scale and are quickly deploying funds to try to find answers as fast as possible.

I think the two most amazing things from the weekend were meeting the patients that were there and the team from TDI. I got the chance to speak with a number of scientists and operations people throughout the weekend. You cannot help but come away incredibly impressed by their passion for what they were doing. Not just that they thought the science was interesting, but they were truly devoted and passionate to finding a treatment. They were emotional when speaking with patients, recognizing they weren’t trying to solve some puzzle, but they were trying to save our lives. Many of the employees that TDI came to the organization because they had some connection to ALS, but the others are hooked as well. They recognize how far this science has come, but more importantly realize it has to be pushed further to truly make an impact. One moment that stood out to me was towards the end of the summit Dr. Perrin, the CEO, said, “I am not going anywhere. I’m staying here until this is done.” That was sense you got from each individual. They haven’t just bought in to the mission of the organization, but they see it as their own personal mission to end this disease.

I was one of six people honored with their annual leadership awards at the summit. You had Anthony Carbajal, who always wears his heart on his sleeve, perfectly cry through his speech (https://www.youtube.com/watch?v=zvivmqeIxfQ). Hope and Steve Dezember perfectly danced through theirs (https://www.youtube.com/watch?v=mJdNapQgJ5A). Pat Quinn was partying at a buddy’s wedding, but sent a video and you could see his determination to make a difference (https://www.youtube.com/watch?v=vxyDyRgc6fg). Then there was Deb Quinn, a patient who movingly spoke about her family being ravaged by familial ALS. More than 20 people in her family have died of ALS and now she has a son with the SOD1 gene causing her to proclaim, “I will never be silent about ALS.” Her speech is here, https://www.youtube.com/watch?v=nGJDoUP4KK4. It’s amazing.

At the cocktail hour on Friday and at the gala we were able to meet other patients and family members. People who I talk to online. Families committed to pushing TDI forward. Advocates fighting to improve patients’ lives. People who of lost loved ones to this disease, still doing everything they can to change its course. (Sarah Coglianese describes meeting some of them here: http://www.speed4sarah.com/notes-on-a-party/ If you are not diligently reading her blog, you need to start. Now.)

As we were flying home, I was thinking about all of the great people we had met over the weekend. I was smiling thinking about having turned my Internet friends in to real friends. So many great people facing a similar future to ours with positivity and determination. Everyone had a spark. People who love life and won’t let this disease change that. People who I can’t wait to see again. But then it hit me. By next year’s gala, we will all look different. Some of us may lose our ability to walk, for others the ability to talk, for others the ability to breathe. Science is moving at an incredible pace, but so is the disease. The urgency is still there. Like Deb said, we can never be silent, we must continue to keep ALS in the spotlight, and to make sure organizations like TDI have the resources they need to move forward as fast as possible.

However, it is comforting to know we are in this with such great peers, families, advocates, and scientists, all working to end ALS.

People continue to dump ice water over their heads in the name of finding a cure for ALS. It is over a month since I saw the first videos start showing up on my Facebook feed. Since then it seems like most everyone in the world has done it, but still I see new posts each day. They continue to make me smile and they continue to give me hope that now we will have the resources to change the course of this disease. People now have a connection to ALS and ALS organizations have seen an unprecedented surge in funding. And it continues.

While buckets continue to be dumped and donations in quantity and in magnitude that we have rarely seen before continue to come in, we must also be focused on moving forward. I was encouraged last week when ALS TDI announced that the unanticipated $3 million in donations they received this month would allow them to fast-track two programs that had been in their pipeline. A drug trial that they thought would take two years for them to raise the necessary funds for, will now go forward. If it succeeds, that means patients get this treatment two years faster. That is almost an extra generation of ALS patients saved. If it fails, we learn WHY two years faster and can proceed accordingly.

Organizations like Project A.L.S. and the Packard Center have also stressed that additional funds will be put to use immediately. These funds will change what they can do and how fast they can do it.

The scale of the donations that the ALS Association has received far exceeds what any of the other organizations have generated. While ALS TDI can quickly put a 30% increase in their yearly budget to work, is unrealistic and imprudent for the ALS Association to hastily make a decision on what to do with $100 million. They also must make sure adequate funds are devoted to patient care and improving the quality of life of all pALS. However, that does not mean we can’t do anything today. That does not mean we can proceed in a business as usual fashion. We should not wait until October to act.

For example, on August 11 the ALS Association announced 21 new research grants totaling $3.5 million. In the call for proposals, the maximum award was listed as $240,000. That means, on average, these grants covered roughly 60% of the maximum request. Some of the proposals may not have requested the maximum, but I think it is clear that many of these grants were not funded at the requested amounts due to the size of the budget. Increasing the scale of these awards would immediately change the pace of these research projects. In addition, limited funds likely restricted the number of grants awarded. There likely were additional worthy projects that went unfunded. With the new resources at their disposal, these projects could move forward quickly through additional grants. Though the ALS Association should take the time to think about the best uses of this unprecedented surge in donations, they also should make a point to fully fund promising research as soon as possible.

Similarly, we have been told the FDA is speeding up the trial process, but now institutional review boards are slowing us down. The Northeast ALS Consortium (NEALS) has been working to create a centralized system. Provide them with the resources they need to get it up and running. That will cut months or even years off each stage of clinical trials. Make sure we move this forward as fast as possible today. While the ALS Association makes a long-term plan, they should also be putting targeted resources into fully vetted, “shovel-ready” projects.

People have used the analogy of not wanting to end up like a lottery winner who four years later wondered where all the money went. For myself, my family, other families facing this disease today, and those families who will be cruelly introduced to the disease in the coming years, my biggest fear is we will be asking where all the time went. No matter what we do, we cannot get the time back.

If in four years’ time we have spent the ice bucket money and have not found a cure, there still will be armies of people combating the disease. There still will be families pounding the pavement to raise additional funds. There still will be new patients being told they have been stricken with a uniformly fatal disease with no cure, whose friends and families will generously devote their time and resources to the fight.

I understand that many funded clinical trials will fail. I understand that there will be research projects that lead to dead-ends. I am okay with mistakes or failures, but not with complacency or business as usual. I will continue to pester my friends and family for donations as long as I feel like their money is bringing us closer to a cure. However, it will be hard to continue to make requests if the largest organization is sitting on a war chest. For years we have spoken about the urgent need for new funds. We have repeated the Dr. Appel’s quote that, “ALS is not an incurable disease. It is an underfunded disease.” Well now that some of the necessary funding has come in, let’s respond with equal urgency in our actions.