Living for Today

sponsored #MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.


Hopeless, terminal, untreatable – all words associated with these three letters; A, L, S.

What do you do with the diagnosis of ALS? Initially, I tried to digest every bit of information I could dig up. Overwhelming and untenable, I at times find it hard to absorb the vast amount of information out there. But I have learned that knowledge is power. And in order to be an advocate for yourself it’s important to learn as much as possible, including what treatment options are available to you.

When discussing potential treatments with my doctor, I will admit the science was out of my grasp. However, undeterred I thoroughly discussed it all at length with my doctor, asking them to break it down for me. RADICAVA® (edaravone) was one of those we explored extensively. I had persistent questions and at times felt hesitant, but I trusted that the experts and my doctors would guide me.

RADICAVA® and RADICAVA ORS® (edaravone) are indicated for the treatment of ALS. RADICAVA® and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache. See Important Safety Information below.

Video caption: My wife Meg and I dancing at our nephew’s wedding. https:/

I encourage all pALS and cALS to discuss every possible treatment option with their doctor.
Until there is a cure we are relegated to live as best we can, surrounded by love. Surrounded by those who embrace us and support us. Ultimately even though we may no longer be able to physically embrace others, we can certainly “embrace our now”.

J. Reyes

Interested in sharing your RADICAVA experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. Call a JourneyMateTM Resource Specialist toll-free 1-855-457-6968 or sign-up at

Whether you’ve been recently diagnosed or have been living with ALS for some time, these ideas may help you and your caregiver navigate and prepare to move forward through your ALS journey:

This information is intended for U.S. audiences only 18 years of age and older. RADICAVA® is available by prescription only. Talk to your doctor.


Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to
edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.

Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your
medical conditions, including if you:
• have asthma
• are allergic to other medicines.
• are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
• Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
• RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
• Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).

Your healthcare provider will monitor you during treatment to watch for signs and symptoms of
all the serious side effects and allergic reactions.

The most common side effects include bruising (contusion), problems walking (gait
disturbance), and headache.

These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for
medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You
may also report side effects to or Mitsubishi Tanabe Pharma
America, Inc. at 1-888-292-0058.

RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis

For more information, including full Prescribing Information, please visit

A pALS a cALS and an RV in San Francisco…what could go wrong?Part 2

Meg and I both turn back an yell “DON’T ASK!”

And now, why John shouldn’t have asked.

Previously-oh well no parking, let’s get back to the freeway…

“Come on Big Blue, you can do it”, Meg coaxed BB up the steep SF hill, pausing for a red light. GPS says “turn left “. This is when I learn machines have a sense of humor.

Have you heard the term, the perfect storm? That’s what ensued.

Several blocks later the GPS, “turn right “, “turn right”. Hey this looks familiar!? “Proceed to xxx street and turn right “.

Having navigated through the narrow semi busy inner city streets; expertly avoiding contact with vehicles, mopeds, scooters, bicycle’s and pedestrians, we turned left. Straight into bumper to bumper traffic as far as the eye could see. “But why”, Meg exclaimed, exasperated.

Okay I can do this, Meg told herself. Being the polite Texas lady she is, she refused to block any intersection with Big Blue and the van in tow. This lasted about three intersections. With the aggressive local drivers it was time for a new strategy. Block every ever-loving intersection if I have to, to get out of this *”@#$ mess!

An hour later we think we’re there, only to find more diverted traffic. But! At this point we discovered the reason for the gridlock!

“Ahh!” We both exclaimed at the same time. Well fudge, we were so busy enjoying northern California that we had not kept up with major events and happenings.

Everything culminated in the Perfect Storm. Unbeknownst to us, we chose to venture into San Francisco on the same day as…

The Golden State Warriors victory PARADE!! What gave it away was the hoards of fans in GSW attire and the blue, white and gold confetti along the route.

Waze, Google maps, nor our RV GPS alerted us to a FREAKING PARADE!


A pALS a cALS and an RV in San Francisco…what could go wrong?

If you know my wife, Meg, you know that telling her you can’t or shouldn’t do something, is tantamount to saying “I dare you”. And when she sets her mind on something, step aside. A goal of hers on this trip was to drive across the Golden Gate Bridge. She had shared her desire with friends who have lived in or visited SF, and they all emphatically said, “whatever you do, don’t drive the RV into the city!” It’s at this precise moment that I hear an idea pop into her mind. I liken it to the pop of popcorn, in my mind that is.

As we approached the famed monolith, she exclaimed “I’m doing it!” followed by, “isn’t Ghirardelli in SF?”

Yes, I replied, at this moment I realized my mistake…I should have said NO!

Don’t do it…))) reverberated through my minds ear.

Two miles then turn left into The Ghirardelli Experience!

Turn left down a steeeeep hill.

There’s no parking!

Oh well Meg sighs, let’s get back on the road.

… An hour and a half later, our son comes out of the bedroom at the rear of the RV, asking, “are we there yet”?

Meg and I both turn back an yell “DON’T ASK!”

If you want to know why John shouldn’t ask…

Com back for part TWO!


CDL Not Required…

Big Blue

Death On Wheels…the live tour
Tales from the road

CDL Not Required!
(Commercial Drivers License)

Ok Mrs. Reyes, we are now going to take your new RV to a location to have you practice driving it. So we tested out the wheelchair lift, tied my chair down and we hit the road. Did you hit an RV course, where they let you test your skills…nope! Did they take you for a quick loop on the highway, like most dealerships? Nope! The salesman took us a short distance to a mega church parking lot, very empty during the week. He proceeded put the 35 foot rig in park, followed by a brief tutorial on the particulars air breaks and gears.

At this point Meg, AKA Captain Intrepid, took the wheel and proceeded to slowly meander through the parking spots and light poles. After a good 3 or 4 circuits she exclaimed, “this isn’t so bad, I’m doing pretty good!” To which the salesman affirmed, “ you’re a natural, I’m impressed.” I’m certain this is a well practiced script, repeated countless times a week, lol. He reeled Meg in with, “ I’v never seen anyone handle a rig this big off the bat, like you!” The deal was sealed and we were the proud owners of an accessible 35ft RV (bus).

Al that was left was to get Meg a CB Radio and some chewing tobacco and she could start her career as a big rig driver. I shake my head vigorously and come to my senses, erasing that last image from my head…what was I thinking!

Ok trucker Mama, time to hit the road! We depart the advanced RV proving grounds with Meg at the helm. This is when the realization hits me, RV salespeople have nerves of steel, just saying. And with this behind us, Meg having received her certificate, suitable for framing, in RV operations was handed the keys to a behemoth land yacht. CDL Not Required!


RV Park Nightmare…

Death On Wheels…the live tour
Tales from the road

RV Park nightmare…
We had been on the road about five hours, coasting through the Texas landscape on our way to Van Horn, our first way point. Meg was concerned that our fresh water tank needed a top off, since we planned to boondock/dry-dock. For the uninitiated it means not hooking up to any power, water or sewer.

So as we passed through the ever changing Texas western planes (just a hint of sarcasm), she was ever vigilant for a location that might offer the chance to tap into a source. Mile after mile, I attempted to use my power of astral projection to hover ahead and recon a location for my intrepid wife. To the uninitiated I may have appeared to be napping, rest assured I was heavily engaged in resolving my loves H2O apprehensions. As she exited the interstate I opened my eyes and exclaimed, “found a place on the right here!”. She looked at me with that look many husbands know, saying “ I spotted it from the road, go back to your nap!” I whisper internally, “she is still unaware of my special abilities” just the way I like it.

What we had both found was a quaint RV park…or so we thought.

As we pulled in our hopes of acquiring that precious H2O quickly disappeared, as our eyes settled on the scene before us. We were transported to what looked like a set out of a Mad Max—RV Park! Let me set the scene for you…

… A modern RV (Big Blue) enters an eerie landscape where a spattering of RV’S from bygone eras appear abandoned. Along with a handful of decrepit mobile homes with the compulsory broken kids bicycles and headless children’s doll’s, let’s not forget the broken pinwheels whirling lopsidedly in the yard.

As we circled the loop, going in the wrong direction, that’s the intrepid wife way, just saying. We half expected a hoard of grizzly hardened post apocalyptic clan of half humans. Overtaking our land yacht and roasting us on a spit for their sustenance. I imagine myself yelling, “but I have ALS, I won’t taste good!” After hearing my family as they ran away…”outrun Dad, he can’t run!”, so sad of a way to go. And here I thought my family loved me.

Needless to say Meg quickly hit the accelerator making the RV do things it’s not supposed to. My wheelchair tilted to one side, in response to the steep high G’s banking maneuver. We quickly got back on I-10, fishtailing down the asphalt. All the while as Meg exclaimed, “I don’t need water that effing bad!”

Our narrow escape from the Post Apocalyptic Zombie RV Park! Hey that sounds like a movie…


Hey I’ve got an idea!

Famous first words, right! That’s how this started; why don’t we buy an RV, travel and visit others with ALS around the country. Meg my supportive wife, said incredulously with a trepidation, oh-ok?

Thus the dream was born. We have always enjoyed camping, even had a travel trailer pre-ALS. We believed that dream to be dead, lost to ALS, like so many things. But here we are, RV-check, plans-check, itinerary-check, Murphy’s Law… big fat effing CHECK!! Ad to the mix two grumpy, “do we have to”, teen’s and Murphy is along for the duration, lol…I’m not laughing.

My intrepid wife, after loading all the provisions in the RV, now christened Big Blue, is ready to pull chalks and hit the road! First stop, Van Horn TX, because well…Texas! We intended to stop and visit a fellow ALS warrior in El Paso, alas Murphy had other plans. So straight to Tucson it was, oh what did Tucson have in-store for us? Well, to say the least, heat, an AC malfunction, a blowout on our tow dolly and oh yeah the heat. Luckily we evaded the po-po with our illegal midnight powerchair drag racing, which I won! After a victory lap a quick infusion of milk in my PEG, per tradition, we prepared for the next leg wit a good night’s sleep.

Coffee and after letting River our dog do her business, oh yeah, I forgot to mention, a dog and a kitten are with us. Have I mentioned we like a challenge, lol. Speaking of challenges, in a video I posted saying “Arizona was not done with us” before it abruptly cut off. Well as we arrived in California Arizona’s heat erupted from me, causing a couple of wardrobe malfunctions… well poop!

Needless to say we will be recalculating and adjusting course. First star to the right, till morning!