Deeper conversation

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Sts. Scholastica and Benedict

The front picture is of Sts. Benedict and Scholastica, brother and sister, founders of the Benedictine order.  At one point, they were visiting and conversing about heaven, when Benedict had to leave to return to his monastery.  The discussion was so deep and holy that Scholastica prayed he wouldn’t have to leave, so they could continue this conversation.  The heavens opened up in a savage storm that would not allow him to leave, and the conversation continued.

This week I had the distinct privilege of spending about an hour and a half with my sister, over coffee.  We went to this place in DC called “Paul”, a chain French café but nicely tucked away.  We were able to get a secluded spot near a door, but isolated from any crowds, which was super nice.1paul_500

Over coffee, she and I discussed the treatment in Boston, our upcoming trip to Lourdes and what to expect (she and her daughter have taken the same pilgrimage there!) and on life, faith, family, religion, friends, heaven, hell, humanity, medicine, and more.  We talked about so much and it was too short a time to do so, because time flies when you are having fun.

I bring this up because over the course of my life I’ve often felt like I was the junior partner in a conversation.  Politely waiting my turn, or not speaking because I am the younger and should listen to my elders.  At work, this is a problem because I’m not assertive enough and I’m supposed to present my analysis.  At home, well I’m the youngest of 7.  (This is not a complaint.)  Lately, though, I’ve been able to interact with people as equals, as elders, and the conversation and companionship that comes from this is incredible.  (I will have another post on particular conversation another time.)

I debated the title of this blog to be called “On adulthood”, but I think that maturity can  come earlier than adulthood (not for me of course!)  Maturity to me is the ability to sit down without distraction and have a loving conversation, not being afraid to bring up topics that others might find uncomfortable, expressing thoughts and deep concepts.  To me, that time is priceless, and I could spend hours and hours just conversing like this.  Our conversation about heaven, for example, was about the fullness of humanity in heaven.  Not about how we’ll have harps and wings and sing dulcet songs, but about how in heaven we as humans would still want to comprehend, would still want to know why and how.  (And, another post on human comprehension later!)  Reason, that thing which makes us want to understand, is what makes humans different – it’s what separates us from the animals!

Some might say this time is wasted, some might say idle theological and philosophical conversation is useless.  Some might say talking about these topics doesn’t solve the terrible problems in the world today.  Some might say that it’s detrimental to “progress”.

Balderdash, I say.  Those people are wrong.

As an adult, I value this time.  I cannot express to you all the joy that it brought me to spend with my sister, and the realization afterwards that it was because we spoke together as adults, not as a junior family member and senior family member.  We touched on the Benedict/Scholastica bond, I think.  I encourage you to open yourselves up, open conversation that goes beyond weather or sports or politics.  You will be surprised.

(A special thank you to my sister for taking the time to talk to me!  I love you!  And thank you to all my family that allow me to wax poetic on topics that aren’t ordinary.  I love you all! )

Open Sponsorship Request

An open letter to all potential partners and companies,

I’m writing you to request your sponsorship and support for building an efficient, modern, lightweight, speedy, and beautiful wheelchair.  In return I offer free advertising and as much PR as I can on this blog, on the chair, or in merchandise.  I realize this is a bit forward of me, so please allow me to present my story.

I was diagnosed with ALS in May, 2017.  At that time, I was living a very happy and dreamlike life with my beautiful wife and 4 children.gregorys
I was pursuing a long and successful career, had settled into a house, and I was generally looking forward to a long life.  Like everyone affected with this disease, it was not to be the case.  Everything turned upside down and living for the long term is no longer thought of, just the day-to-day.  This is not to say I’m giving up – I have not yet begun to fight, as so famously was said.  But in that fight I will need help as my body becomes weaker and weaker.  My wife Melanie is by my side through thick and thin, my strong right arm, my children are with me to help me see what the future looks like.  My speech and thoughts can be shared by modified communication devices.  Food can come through a tube.  But my own body will be confined to a power wheelchair or a bed in the near future, and this is where I have hit a snag – I want to be mobile.

You see, modern power wheelchairs aren’t really that modern.  Rehab, tilt-in-space, elevating, stair climbing wheelchairs are novel and needed, but they don’t do something that a lot of people would want – they don’t go places effectively.  Modern power wheelchairs use lead batteries with a top range of 12 miles, maybe, if the charge holds up.  The batteries have to be replaced often, if they are used frequently.  They don’t go faster than 4-8 mph, without the ability to quickly go faster in emergencies.  They are made with heavy steel, or maybe aluminum, and are incredibly heavy, poorly balanced, an unwieldy.  They have terrible ride quality that makes it more painful to ride than walk,  They have upgrades like “paint color”.  They have turning radii that are terrible, especially inside, leading to knocked knees or knocked walls.  They trap wheelchair users to either being confined to their homes or unable to move around inside because their chair is too big, or worse, forced to purchase more than one expensive piece of heavy hardware to move around indoors or outdoors.  This isn’t just wheelchairs, either.  Modern personal mobility scooters also are also bad, as I experienced in my first ALS foray on a scooter. Rocinante Rocinante, as I named it, died on me 3 separate times, and only had a range of 6 miles.  6 miles, at Disneyworld, is less than half a day, especially with 4 kids.

So I researched.  I saw that all the big, insurance approved power wheelchair manufacturers make similar chairs to each other.  I would venture to say that none of those companies are pushing the power wheelchair into the future – instead  they are sitting in the same tech from when the power wheelchair was invented.

This is where you, the company, or team, come in.  You are the leading edge of what is out there.  I see new technology being brought to bear in automobiles, auto racing, sensor tech, self-driving tech, bicycles, motorcycles, even so-called “last mile” transportation, and more.  I wish to bring that technology to wheelchairs, so that disabled people such as I can have the freedom to enjoy our remaining lives, instead of being confined to a home and TV.  Therefore, I ask your help, for your sponsorship.

I want to build this powerchair, with additional adjustments, rehab seating BM3-lithium-15mph-powerchair-1-smallconformed in a Recaro-style seat.  The major design concepts are there on the website, but through the help of my family and friends we might be able to make it happen.

I would like to ask you, the company, to sponsor this build.  $100, $1000, $10,000, research, materials, design and engineering help.  Do you want more concrete ideas of what I truly see that this powerchair could be?  How about a carbon fiber chassis and seat, like Formula 1, or the new Ford GT?  High end suspension systems, from Fox?  How about lithium batteries from Tesla, or Fisker, or BMW?  What about electric motor and battery technology from Formula E that can have a chair safely go up to 15, 20 mph when needed?  What about Audi, Nissan, Ferrari, Toyota, all these companies with vehicles with hybrid systems?  What about brain control technology from companies like Emotiv, programmed so that ALS patients who can’t move their arms can “Think” their way around?  What about a control system that gives the patients the greatest control, like Robotec?  What about partnering companies with universities like Hopkins or MIT to test and truly innovate?  What about you, big wheelchair manufacturers, partnering with actual disabled people to design chairs that can do more than trap us in small areas, out of sight and mind, rotting away in front of a TV?

Help me build this.  You can market the breakthroughs to make a profit!  Call it a personal mobility vehicle or device, and address last mile transport!  Hone the nuances of self driving tech without having the dangers of high speed car crashes!  Develop longer lasting, more efficient batteries and motors, working on a smaller less expensive scale.  Think of the possibilities this might bring to your company and brand!

If you offer your support, I will gladly speak for your company, be it on this blog, or painting the race team colors, or designing special decals or custom paint job for your company.  I would gladly add decals to the chair for other sponsors, in strategic places, and wear company logos and merchandise for those companies that would support this project.  I would speak often about the technology and the innovation provided for this project.  For a small investment, you then get a loyal fan and more advertising than you could buy for such a cheap price, and the charity story would add to the appeal.  Think, helping disabled people that normally might not be able to use your products, such as high end cars, or tools, or athletic gear, or sports gear, electronics, or even food and clothes, now being supported in breaking through barriers of mobility.

But I need help.  I have ALS, and don’t have the strength or the timeline to do the work myself.  I also don’t have the unlimited time of friends and family who have been so generous already in helping me bring this dream to reality.  I cannot burden them more than I have been.

Therefore, I ask your help.  You have the expertise, you have the money, materials, engineers, programming support, and other support.  I ask this in the hope that this could turn a profit for you, thinking out of the box.  I beg you to consider this open letter and respond with open minds.  I know perfect is not for real, but maybe we can get closer.

Thank you so much for your time.

Very Respectfully,

Joe Gregory

Continue reading “Open Sponsorship Request”

Back from Boston. Thank You!

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Apparently I need to buy one of these now?

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.  IMG_2639-1

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.

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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!

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Push push push… but slowly!

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.

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“You should put on a shirt or Grace will never be satisfied by another man.” -Return to Me

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.

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4 sticks before they could figure out how to get blood.  This is me willing the blood to flow.

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.

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!

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Not a big S-bucks fan, but these cups are the perfect size for Mel and coffee.  And if she likes them…!

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.)

An audience

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Look!  Out there in the audience….

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!

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People?!?!  AAAAAAAHHHHHH!!!!!!

Flying to Boston…

…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.

 

On Heroes pt. 3

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Dinner Argument (source Wookiepedia)

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”