Breathe in, breathe out

The two biggest factors in ALS ratings, apparently, are the ALSFR scale, and lung capacity.  So every visit to anywhere I fill out a 1-5 scale on if I can swallow, eat, hold a fork, get dressed, turn over in bed and move the sheets, etc.  Mundane stuff really, that you don’t think about until it’s hard to pull the covers up, or hard to button.  Or if you start to fatigue just talking, like me.  I joked that a half hour conversation could have taken 10 minutes if I could speak normally!!  (It’s really ok.  I could probably get super inebriated and no one could tell the difference!)

So this test, in the picture, makes me panic a bit every time.  Lung capacity.  And… uhm… the test “blow hole” for lack of a better word is so wide that all the air comes out at once and you feel like you are failing.  It doesn’t help they are saying in the background “push push push push push good!”  (Delivery room flashbacks!). It also doesn’t help that Mel is the room taking pictures and making me laugh while doing it!!  But seriously, do you see that picture???

Which leads to the irreverent attitude I have in the dr. office.  I don’t know about you, but life is hysterical.  The fact that I have this disease doesn’t make it any less hilarious all the things we go through!  Mel made me walk all the way across the hospital to reach a clean bathroom.  I couldn’t stop laughing the whole way!  The OT wants to give me a carbon fiber foot brace for foot drop… I get my pirate peg leg!  There are so many positives that I can’t stay serious for too long, I’ll go insane!  (And, I am active.)

All this to say, with all the news going on in my life, all the blessings, kind words, prayers, monetary help, and people I’ve never met just willing to help, I feel more at peace than I have in the past.  This clinic visit was harder than before, but I left with a real view of the road ahead.  And I breathed easier.  The road is hard, the struggle is real, but with God, the saints and angels, my family, my companions, we’ll make it.  Breathe out.  God’s in charge no matter the outcome.  So smile, laugh at yourself, because life is hilarious!

Blessings and graces

God will never be outdone in generosity.

Two weeks ago, Mel and I interviewed with the Knights of Malta for the chance to go with them on a trip to Lourdes, France, site of the Marian apparition to St. Bernadette.  Then Mel and my family started saying novenas that we would be accepted to go.  We are praying for a miracle, and we pray to “help our unbelief”.

Earlier last week, we received a generous gift from a family that has been very kind to us:

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Roses, always special in our house, and the prayers of the Dominican Sisters of the Perpetual Rosary.  Roses are special because Mel’s Mom’s middle name is Rose, and we know she is praying hard for us, and helping us.  So then yesterday I got a call from the Knights of Malta, and we got selected to go to Lourdes!!!  I am floored, excited, grateful, overwhelmed…. it’s amazing!

I am not done yet.  Like I said, He is never outdone.  I met a wonderful man this week through my sister (also my godmother), who is very similar to me in that he is young, a father, and has ALS.  We have similar initial symptoms, and he is wheelchair-enabled (having a wheelchair is not a disability, people!). But after a brief conversation over text and then over phone, we connected, and hopefully will be able to meet face to face soon. Matt also put me in touch with clinical coordinators of possibly one of the most effective trials of reversing ALS symptoms to date… and they responded within the day.  Now there is a very good chance I could join the phase 3 trials up in UMass as soon as this month.

It’s selfish sometimes to think about this.  Matt has had ALS longer and he’s not eligible for the trials.  But he reached out so that other’s might have the opportunity to try, and if successful, pave the way for him to get the actual FDA approved treatment!  This is what I mean by a wonderful man.  And God willing, may I do the same for others.

On improvements

Last time, on the chronicALS, our hero was fighting the tyranny of steel and lead batteries.

OK, so complaining about stuff never gets us anywhere.  What about solutions?  We can complain and complain, and at the end of the day we sound like politicians.  When Daniel Boone, complained, he went out west and found a solution.  When Nikola Tesla encountered a problem, he researched and found a solution (some that we still use today, btw.)  When Thomas Edison had a problem, he stole the solution from Nikola Tesla!  I kid, I kid.  Sort of.  That’s a post for my other blog, “Genius inventors who stole from other people”.

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I’m inspired by F1.  Formula 1, a private organization, has been racing for something like 50 years or more.  And they’ve constantly pushed envelopes and responded to changes in tech, engines, and everything.  They have gone from steel to carbon fiber, from V12 engines to turbocharged v6, to hybrid power for engines.  It’s fascinating.  and inspiring like I said.

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So, in that vein, let’s improve the wheelchair.  Right now, most power wheelchairs have steel tubing.  Maybe aluminum.  OK, so, like F1, lets more from steel to Carbon fiber!  Strength to weight is WAY better, and you can make more complex shapes without having to mill steel, bend tubing, etc!  In fact, the possibilities are limited by only the mold you are able to build.

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Then let’s look at batteries.  Actually, this one is too easy – Toyota Priuseseses have better batteries than everything out there, and they are at the bottom of the spectrum.  Then there is BMW, Mercedes, Formula E, Tesla… all making the rechargeable battery more powerful and more efficient.  So… wait, you are telling me I still need to use a 40+ lb lead gel battery????  And I have to use 2 of them to get around all day??  No dude, there have to be conversion kits for all the car batteries that are out there.  There HAVE TO BE!!!

Ok.  See what I mean by the art of the possible?  I know that the people that make this stuff have beaucoup cash and I don’t.  But everything is getting less expensive for sure.

And, a shout out here, my lovely wife Mel has been so supportive and encouraging, and my brother-in-law and sister-in-law have helped take the first stages for getting it on paper and even calling shops for me and everything.  The movement is real and my dreams would stay dreams without all of them, and their love and support.

So keep dreaming, there is nothing stopping you but yourself.  Ask for help, then go for it!

Mobility for the disabled

Anyone who knows me even a little bit knows that I love gadgets.  Either electronic, or mechanical, or even retro old school “technology is bad!” gadgets.  Maybe it’s more of a fad?  Like, paintball in college….surfing… drawing… woodworking… ok, there is a definite trend.

Anyway, to the point. My first clinical at Johns Hopkins, the physical therapist and I were chatting and we discussed when and if I’d need to be in a wheelchair.  My first comment to him was, “I want a fast wheelchair.  Seriously.”  The little chuckle from my lovely wife confirmed that it’s a gadget, and of course I wanted one.  We didn’t talk more about it until a few weeks later when I started looking into the chariot that would become my throne later in life.  That went more like this: “Man, these chairs are ugly.  And holy cow they look heavy… and they are all so slow!”  OK fast forward to the now, and where we are.  Without going into the cynical reasons behind the situation, what I’ve decided is that modern tech is not supporting people with disabilities.

There, I said it.  Here’s why: Praise God, giant leaps are being made in medicine.  Research and development are finding new cures for difficult diseases, and we shouldn’t stop that. What I mean is the people that don’t have a cure, or that are mobility impaired.  The mobility industry has not modernized, has not taken advantage of technology to help out those people.  Let’s talk about wheelchairs.  In summation, modern wheelchairs are steel behemoths, using lead batteries and foam filled tires.  We get told which ones we need and which insurance will pay for, and then we adjust our daily lives to fit the wheelchair.

Now, I’m speaking from some experience.  We were gifted a trip and my lovely wife made sure we rented a “lightweight” scooter so I could get around.  And that scooter was still heavy…. and only had a 6hr use time.  What?!  I had to baby the throttle and NOT use it often so to save battery so it would last all day, and even then, it died on my or the fuse flipped because I “pushed it too hard”.

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My trusty steed

OK, so what, Joe?  At the end of the day, profits drive companies, right?  And, there have been big improvements in power recline and tilt capabilities, right?  Yeah, you are right, and I don’t want to take that away.

But, there are F1 and Indy and Formula E race cars out there that go 200mph and more, and they are made completely out of carbon fiber.  There are self driving cars that take you where you want to go with only minor monitoring from the driver.  There are electric cars that can go 0-200mph with a 350 mile range.  Heck, there are go-karts made out of carbon fiber.  The art of the possible is more pronounced right now than ever before!  But I got 6 hours from a lead battery, a heavy steel frame, and an unresponsive motor with a top speed of 4mph.  And to be frank… man it’s ugly.

I know.  This is a fad.  I have ALS, and won’t be able to go fast and eventually won’t even be able to drive a wheelchair around.  Be happy with what I have, and can get, right?  Well… why?  I see a niche in the market that is unaddressed.  I see a need that isn’t being met for people with disabilities that need power wheelchairs.  There is great opportunity!

Well, I want to make the carbon fiber electric wheelchair.  I want it to be beautiful, light, efficient, high endurance, and fast.  And it wouldn’t be for me only.  A carbon fiber base/monocoque can be mass produced and seating accommodations can be customized.  Lithium type batteries are getting cheaper and more and more companies are testing them.  Now, while I have time, I want to make this a reality for now and beyond, not just for ALS patients but anyone that needs a wheelchair.  It might be a fad that fades, but I hope not.

Maybe you all can help me push myself to get it built!  Team effort?

I promise I won’t be negative every post – hopefully this one captures my passion for this particular problem – I feel very deeply.  Hopefully not too angry.