Author: Joe

Visit one was successful, and after all yall’s support, I wanted to pass along a summary of the visit.  Because why can’t we share!

First off though, a very special thank you to everyone who enabled this trip by watching our kids, Mom and Col and Mrs. Jones.  Thank you all for the moral support and humor throughout the day!  And thank you especially to Melanie, who got up 3 hours earlier than normal, drove the whole day, asked questions, took pictures, was my sounding board, and all around awesome person on this whole trip and every day of my life.  I wouldn’t be able to do any of this without Mel.  

We left home at 0330, NOT snowing here in Manassas/DC, fast drive up to Reagan National, and early enough to get a Dunkin Donut and coffee (again, thank you Mel!)  The flight was very uneventful but beautiful to look out the window.At first I thought we were going to flying over the water but I was deceived, it was clouds!

So, I’ll be honest and say I don’t remember Boston at all.  I “think” I went through when my family went to Maine BACK in the day.  Outside the airport, we took the Ted Williams tunnel out of the city to Worcester (Wistah… Wustah…) and the architecture in Boston is quite lovely!  I mean by that I didn’t see a single garish building (Ok Fenway doesn’t count) on the whole drive.  THAT is impressive.  The next impressive thing is the number of old churches.  Steeples, steeples, steeples, gothic architecture, man…. Even from the outside, BEAUTIFUL.

Umass was really cool, new, and BIG.  Luckily we had good directions, and we got there early enough to have breakfast and also go in 30 mins before our appointment at 1100.

And ok, this is what you wanted to hear about. The visit was awesome.  Dr. Owegi was trained by my neurologist Dr. Maragakis, so she knew our whole team up at Hopkins, which is a huge reassurance.  It’s just nice to be able to have doctors that are on the same page on things!  The clinical research assistants were also awesome, they had been in contact with me since January and helping me get set up on the whole trip.  (They really were awesome!)*

The fun parts began after I signed on the dotted line.  The physical exam, always fun to see how my body is doing.  I swear at this point I’m like a drunken sailor.  Then, the breathing test.  THE BREATHING TEST!

I got an 84 on the breathing test even though twice I nearly broke down laughing.  Because LOOK AT IT!  IT’S RIDICULOUS!  The good news though, and I’ll be BRUTALLY honest here – breathing means survival.  If I’m operating at 84, then I’m doing FAIRLY well – I would say that a year in from symptoms, I’m beating the odds so far.  God be praised.

This wasn’t the hardest part of this whole thing.  That’s to come later.  The fun part of this is my brother-in-laws voice in my head saying “push push push push push push push push!!)

Then we had an EKG.  Gotta make sure my heart is functioning normally.  This one also was humorous as the little sticky things wouldn’t stick.  And I had trimmed my chest hair because I KNEW.  Still, didn’t work, it fell off.

But wait, there’s more!  The final thing was to draw blood.  And if you are following the blog you know I don’t like needles.  The docs always stick it on the inside of the elbow where your arm is super sensitive and I imagine the needle poking even deeper into my arm and…. ew.  I hate that.  So… they did it to both arms.  I don’t know what the heck was going on, because my veins were popping but they couldn’t get any blood.  Called in backup, even she had trouble.

I actually think that blood draws on the wrist hurt more, but are easier to grimace through as opposed to the elbow area.  So I’m gonna ask for that in the future.

Now we wait for the results, and if they are good the next appt may be in a month and may only take about 15 minutes, so we “might” be able to do it over the phone!

We were there from 1030 to about 230, then Dr. Owegi also gave us food recommendations at my request, and Mel and I went for a date in Wustah… Wastah… sometime Wystah… at this place called Volturnos.

Beer is a tradition after a Medical appt.

Mel’s so pretty, and I have Bell’s palsy, apparently

Neapolitan pizza, it’s REALLY good.  I think we may go back.

After that the drive back to Boston, and again where Mel showed herself amazing.  Straight shot back up 90 to Boston and I fell asleep and Mel LET me.  Holy cow, driving solo in a different state with her navigator asleep???  And she’s already done most of the hard work- I just had to get stuck with needles.

And back at the airport, which aside from Mel and I getting patted down again, them not understanding what a picc line is, and being 2 hrs early for our flight, was fairly uneventful.  Mel and I were pretty tired, especially Mel’s hard day, and we were able to make it home where the Jones’s were home with the kids.  At 2345.  Have I said how awesome Mel is?  So I got her a thing that she likes (my love language), and to many more!

Again, thank you ALL for all the help watching the kids, offering moral support, praying for us, supporting us on Facebook, offering contacts and help… Thank you all!  I love this community, I love meeting new people and old friends and feeling God’s love through you.  I even love meeting new people in the ALS community that are so nice, and caring, and genuine. I wouldn’t have met them if I didn’t have ALS so it’s a blessing to be able to do so.  That’s right, ALS is a blessing.

If you have any questions, go ahead and ask!

*(So the trial – I’m not sure if I’ve explained it, but Dr. Owegi was really thorough in explaining the whole thing.  The big takeaways are: bone marrow harvest on visit 5 (they will take the marrow from my hip.  They’ll put me under for it, so we might probably overnight that day and enjoy something around Boston.  Then, they’ll grow the cells and when they are ready they will inject them into my spinal fluid on visit…7?  That is a 24hr inpatient procedure.  [This is Spinal Tap!]  The injections will be 3 total, and the whole study is about a year.  In another post I’ll explain the rationale of this whole thing, and the hope and the desire of the outcome.)

This week I had a good convo with an old friend, a coworker who was leaving the job.  Our chat centered around putting ourselves out here on interwubs land, where people can read about you and comment or not, as the case may be.  This is rather frightening, to be honest.  Do you realize how nerve-racking it is to open up thoughts, insecurities, plans, my life, to people out there in the interwubs?  I mean, people do it all the time, to be fair.  but I’m a private kinda guy in public.  I’ll debate with you all day long over a beer, or a meal.  I LOVE a good debate.

But a debate requires two or more people, a topic of interest, and a commitment to listening to the other person and debating on the topic.  (See Washington, D.C. for what NOT to do, also the media, etc.). This blog at times is more of a monologue, where I can expound as if I were a grand professor at a University, and my class listening to my words.  I sit up and pontificate on thoughts by Joe.  Providentially, there may be people out there that can correct my theology, but on other topics it’s just me blathering on.

I think it’s good to be vulnerable, though.  The podcast “Catholic Stuff You Should Know” talks about vulnerability being key to the Christian life, as it allows for correction, allows for formation, allows for love. If we wall ourselves off in our own strength, we don’t grow outside of those walls.

So I’m going to keep doing this, as long as I can.  Y’all are welcome to ask questions, to suggest topics, to call out my thoughts and know that I am interested in a true “Havarim”.    Or just let me keep rambling.

Just know that it’s terrifying!

…and it’s snowing.

Yyyyyyyup.

Unless our flight is cancelled, Mel and I will be leaving for Boston and Worcester (WOOOOster) at around 4am tomorrow for our first Umass visit.  This is the first of 4 to see if I’m as good a candidate in person as I am on paper for the NurOwn stem cell trial.  (Reminder, NurOwn was shown to reverse symptoms of ALS in Phase 2 trials.  Not a cure, nor a slowdown of progression.)  Then if I am a good candidate, it’s more visits to get spinal taps (up to 11!) and then……  Well, I’m not sure.

I appreciate all the prayers and support you all have given us over this decision.  It isn’t the safe choice, it isn’t the most clear choice, and depending on how it goes, I may progress faster than before.  There is also no guarantee that after this trial I might get on the Radicava again.  So, lookin pretty uncertain.  I’d appreciate more prayers because the real hope is in a miracle.

It is in God’s hands though, and that’s all I can do – it’s the only thing  to  do.

Today I wish to highlight heroes that play a huge role in my life, but are so many that I can’t write individual posts about each person, or each individual thing they do.  Please know that in the general statements I make, I’m trying to honor every one that has been there and is still there.   I might do individual ones occasionally, but in the interest of actually sharing about them, here we go.  Names are withheld to protect the innocent!

When I was diagnosed with the ALS, a doctor I went to (that I didn’t like that much, actually, but I think that might be a separate post) asked me if my family was local.  At the time, I didn’t think much about it but as this year has progressed I’ve realized a ton about what it meant, how much it mattered.  These heroes are my family.  Wife, kids, parents, siblings, in-laws, cousins, aunts, uncles, the whole deal. Continue reading “On Heroes pt. 3” →

So life isn’t all loganberries and daffodils and rainbow farting unicorns!  Sometimes there are legitimate days when you don’t do it right.

Today I had no response to someone who for all I knew sounded serious about someone being “militantly pro-life”, and making it a bad thing.  I knew then I should have said something, I should have told the person that I was militantly pro-life, that I found nothing wrong with it, I should have stood up for what I believe in.  But I didn’t, and in the few seconds that I had to respond the moment was gone, the conversation moved on.  I failed.

Why does it matter?  Well, the statement was about making abortion illegal.  I happen to think that protecting the unborn is of primary importance, but also that abortion is a gateway for many things that are straight evil in the world.  Let’s be plain: killing a baby, the most innocent of humans, is evil.  That it erodes the value of other human life, or human interaction.  That it opens the door to objectifying women, debasing their innate value.  It opens the door for using other people to get what you want, either for personal gain or gains by the state.  If we don’t see the value in the littlest one for whatever reason, then why would we care about the big ones?

When I heard the statement, not only did I feel appalled for the babies, but I felt a death sentence on me.  I am no longer a fully productive member of society.  I can’t function the same without help, and it will only get worse.  I’ve already spoken about how society doesn’t treat disabled as people, well this is the natural progression.  Will I be allowed to live or will I be considered a burden on whomever?  Will they be “just not ready” to deal with me, as we as a society are “just not ready” to have kids yet?  What happens to my friend Matt, with his beautiful family?  And is it just me that is now on the chopping block?  What about my hero Michael?  Is he safe?  What about my many friends that are either sick, or suffering, with cancer or muscular dystrophy?  Are any of us safe?

When you say you’re pro-life, these are the people you are talking about.  It starts with the cell that is a mix of father and mother’s DNA.  It continues with the sick and disabled.  It continues with the healthy.  All human life, no matter how effed up it may be in the eyes of the “normal”, is sacred and worth living.  It’s people, darnit.  (Heck, it’s the reason that “soyulent green” is so repulsive!!). Why do we value it so cheaply?

Why do we say on the one hand that we must pass any law to “protect the children”, yet we slaughter children daily?  Or we say nothing about children killed in other countries?  Why do we swear up and down that healthcare is important, but we won’t allow for expanded access to experimental drugs to those with terminal illnesses (yes I’m talking about “Right to Try”)?  Why are some states ok with assisted suicide but then we struggle with teen depression and suicide?  What the hell is going on???

I should have said something.  One voice, as inept and incompetent as it is, could have at least opened a thought, however small.

I should have said something, but I didn’t.  My silence condemns me.