To the Marcuses Around the Globe

Three years ago we celebrated our first Duchenne Awareness Day. Marcus was with his 1st grader classmates when they let go of the symbolic red balloons in unity with the rest of the world who continue to raise awareness that such type of muscular dystrophy exists. He can still walk back then.

He demands pizza for Duchenne Awareness Day.

Duchenne Muscular Dystrophy is a condition that affects mostly young boys. Also known as just Duchenne or DMD, this condition is progressive with symptoms that may manifest during the early stages of childhood with some kids starting to feel the signs earlier than the others. In Marcus’ case, his condition started to become obvious about a year since he started to stand up. He walks weird, can’t run like other kids, and had difficulty holding himself up on the monkey bars just to name a few. Eventually we discovered he has DMD after we had him checked at the age of seven. At eight he started using his red wheelchair.

DMD poses a whole lot of challenges on parents. The need for commitment, love, compassion, and patience cannot be stressed more than enough. To be honest, it is physically and mentally straining but once you put yourself in the shoes of the child who has it, then everything else that you secretly complain about becomes petty or trivial. As I always remind myself, if I’m frustrated and tired, more so Marcus. This short thought keeps me back up on track.

Today, September 7, we once again join all the families and the other Marcuses around the globe who continue to deal with Duchenne Muscular Dystrophy. We also wish good luck and more power to the people whose aim is to find a cure that could be available soon to everyone who has DMD. It may not happen in our lifetime but as long as the awareness is alive there is always hope. We also recognize the physical therapists (FYI, tomorrow is World Physical Therapy Day) who work hard so that our young boys’ lives are a little bit better each day.

Today’s PT session.

***

This week wifey had me watch Fundamentals of Caring on Netflix but we barely made it halfway as I got so sleepy after coming out of night shift. Despite the short clip I could already feel that this film’s depiction is accurate. Hope that we finish it this weekend and I hope I don’t shed a tear. Shhh.

***

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Our first visit to a store that doesn’t exist

It’s been weeks since the monsoon rains have stopped Marcus from getting his regular Friday physical therapy. Opportunities to get him out of the house and away from his video games every weekend have been much harder. Yesterday weather permits but instead of going to the malls we frequent, we decided to go to SM Mall of Asia (MOA) instead with Marcus and I having our own secret goal: visit Ikea.

It was a two-hour drive slowed further by weekend traffic at the SLEX and Skyway expressways plus intermittent heavy rains. The sky cleared when we reached MOA via Entertainment City exit and it appeared then we could move around SM by the bay when the mall gets stuffy for Marcus.

Still clueless of what we’re about to discover, we pushed through finding Ikea. While having dinner at Pound by Todd English I checked online and read that Ikea is between MOA Arena and SMX. Next plan was getting there as soon as we have our tickets for Mission Impossible: Fallout and when drizzling has stopped.

I began to feel suspicious and stupid when I realized I must have skipped some details on the news about Ikea opening in the Philippines. Three security guards later, the last we asked said, “Yan malamang sir (That must be it.)” He was pointing to a still empty fenced block right outside of the mall. Sucks. It was a matter of will open versus is open. With only one short crane sticking out of that place, I don’t believe we’ll see an Ikea store this year.

Mainly to take note where we parked.

***

The latest Mission Impossible sequel was a disappointment. It’s overrated and hyped. It’s like one of those films with trailers that are a whole lot better than the movies. My wife and I were dozing on and off but Marcus said he enjoyed it although I know it would’ve been a better experience for him if we watched it in a cinema with stable reclining seats.

We should have just watched the free Okada fountain show.

***

Wheelchair access Bows and Boos

Bows:

Elmo at Pound by Todd English’s bar area.
  • Jollibee staffs at MOA Entertainment Hall who made sure Marcus and his wheelchair get a space.
  • Pound by Todd English staffs who accommodated us despite the tight setup of their restaurant. Burgers were surprisingly affordable and great too.
  • Restroom staffs who kept the PWD area clean.
  • Okada tour bus attendant who entertained our questions and promised to get Marcus prioritized.
Recreating how he looked like 10 years ago the first time he was in this mall.

Boo:

  • SM Mall of Asia south parking building elevators were already unavailable when we got out of the cinema past 12 midnight. Someone parked in the same area had to find security guards to get it back running. Not cool.

***

Mood: 3/10 Honks! (Weekend weight.)

Getting Used to Fancy Cinema Seats

When Marcus was smaller he almost got stuck in a cinema seat when the foldable chair tilted back in place. Since then he would hesitate to be seated alone for fear of falling in the gap once more. So it did come as a surprise when he immediately loved the first time he experienced watching a movie in a stable and comfy recliner seat. It was back in 2016 in California. It was a Star Wars film.

With our recent preference to avoid Alabang traffic we discovered that Cinema 3 of Solenad in Nuvali also offers such luxurious seats. For P400+ (approx USD7) per person it’s a win-win regardless if I like the movie or not. The recliners make comfy beds when boredom or effect of graveyard shift takes over.

Uptown Mall’s ultra cinema knows how to spoil a kid.

Two days ago we found a better movie deal. Uptown Mall in BGC has what they call ultra cinema which likewise offers recliner seats except that for almost the same price tickets already include refillable snacks of soda and popcorn. Take note, refillable. Soda. Popcorn. Besides the regular buttons to control the seat’s positions, there’s a summon button for the attendant when snacks run out. Thankfully that didn’t happen and our Incredibles 2 started and ended without interruption. Sort of.

Coming out of a short nap, thanks to the spicy Scott PNC burger and the free cheese popcorn and 500ml Coke, I had to excuse myself for a pee break. But what did I miss? None. Not only that the cinema’s toilet is clean, it also has speakers that play clearly the movie’s audio. I could have stayed longer in there and wouldn’t have missed any except watching Mr. Incredible play regular parent for the most part of the movie. This is how all cinemas should be like.

***

New rings after 19 years.

We stayed for three days and two nights in F1 Hotel Manila, BGC to celebrate our 19th wedding anniversary. The hotel was average and our room is similar to what we had in A Venue Hotel wherein there’s a separate room from the suite’s receiving area.

It’s not an issue that the bathroom didn’t have a tub but it took time for housekeeping to provide a chair for Marcus to use while taking a shower. So his first shower was done seated on the floor. Lesson learned for us: bring our own monobloc chair next time.

The hotel has three pools but the lap pool was under maintenance. Two options left weren’t really good and pool area was quite tight considering Marcus has a wheelchair.

A couple of treadmills in the gym were also down. Towels aren’t readily available unlike in Acacia Hotel. I had good sessions though and what kept me going back was what I like the most in this hotel.

What the hotel lacks in its room and service, it makes up for in its breakfast buffet. F1 Hotel Manila serves remarkable food. I liked everything I had on my plate–veggie curry, Frankfurter, omelette, tortang giniling, Danish, pancakes, etc. My MyFitnessPal app recorded about 1000 calories alone for each free breakfast which was more than enough to fuel my treadmill runs and weight training. FYI, I returned home with just three pounds more.

***

It rained hard so we sought shelter and learned we can afford Denny’s.

The hotel didn’t stop us from enjoying wedding anniversary though. We tried new things like our first Grab car ride and we discovered that we can afford Denny’s. It was also nice to set aside my phone for most of the day while I give more attention to Marcus, watched cable TV movies with him and listen to his perfect impression of his mommy sleeping. Trust me, he nailed it. Good times.

Glad we grabbed a Grab.

***

Mood: 3/10 Honks! (Uneventful return to reality.)

Gloves or No Gloves

We often ignore that our body continues to send messages to us. It tells us what it can do and what it can’t at any given moment. Most times, out of arrogance or stubbornness for example, we dismiss these messages but there’s limit to it. At some point, mind over matter just won’t work and so the next smart thing to do is to listen to our body.

Among the most recognizable message is pain. It’s the body’s way of telling us that something’s broken, something’s wrong. No pain, no gain they say but if the pain persists and becomes visible, it’s time to stop and check.

It starts with a callus then the crack follows.

Two weeks ago I went back to the dermatologist to get my hands checked again. Last year she said that the reason my small digits are dry, peeling off, and cracking is due to some form of dermatitis. This last visit seeing that the condition remains she asked, “What do these fingers do?”

“I do pull-ups almost every other day.” This revelation made her recommend that I use a stronger hand ointment plus that I start using gloves to lessen the pressure on my hands whenever I work out. I stepped out of the clinic in under 15 minutes–barely a fourth of my waiting time–with her expert opinion noted but with the thought to break it immediately once I start my bar activities again. Unfortunately, that same week the dreaded flu bug struck. Some timing sucks.

I took it as a sign to lay off. I concede but I continued my daily stairs breaks at work–at least 10 flights a day–but any exercise involving the hands was set aside.

Almost two weeks later, my intakes of Berocca and extra doses of zinc once again paid off. My frequent use of lotions and hand cream also worked. So last Friday I gradually started working out again. This time I used the gloves I got from Decathlon. It fits my hands and grips the bar better than expected, however, I might not use it most times.

Good fit but the Garmin has to go.

For one, it does not allow me to use my Garmin at the same time as the velcro wrist strap gets in the way. Then I learned from a channel on YouTube that what I got may degrade its grip as I sweat because the lining inside isn’t made of leather or similar material. A poor grip while doing the windshield wipers would be a disaster.

(Left) Leather-like outer material allows good grip. (Right) Inner lining could affect grip when sweating starts.

I’m partly following the doctor’s advice though as I can see that my hands have improved during my lay off period. It seems that the cracks are indeed induced by excessive pressure and friction from gripping the pull-up bar so I need to switch from gloves to towels when I do pull-ups routines. Let’s see if this sub-500 pesos gloves will last or else I’ll check if the pricey Nike or Harbinger gloves would take care of my sensitive old hands better.

***

Mood: 6/10 Honks! (Rainy Monday and someone needs to be grounded.)

I Miss Baguio Weather

Contrary to what I believe that Baguio is no longer cold as before, no thanks to climate change, I was in for a surprise when we stepped out of our rented Foton View Traveller van after a 5-hour trip.

The place still chills almost like California. “It’s like US,” Marcus exclaimed when the early morning air of Camp John Hay hit him. Our initial plan was to travel light and ditch thick clothing but good thing I got the Accuweather app so I packed hoodies and jackets for us before we left Batangas. Brewed coffee from 7-11 wouldn’t have been enough if I didn’t check the forecast.

First morning straight from a long trip.

Temperature was about 16 degrees Celsius and peaked at 26 around noon. Obviously far better than the scorching 32 degrees back home. Home where it’s hot and humid that running has become more challenging. Waking up from a sweaty sleep wasn’t a problem though.

Like this morning I had to make an effort to put on my running gear to do a 5K. I wouldn’t have done it if not for the servings of strawberry–fresh from Baguio–that I turned to milkshake yesterday. I downed 600 plus calories out of that sweet guilty pleasure. (My curiosity of how much calories the shake would make had me use MyFitnessPal’s recipe entry for the first time.)

Tough run.

Baguio weather is perfect for runners although its hilly terrain is a different story. We stayed in a transient house located somewhere in Wakat which has roads so steep that I almost let go of the idea of running the moment I saw the inclined first hundred meters right out of gate. I summoned enough motivation to continue nevertheless.

Aided by Waze I completed a 10K run to Burnham Park and back that Saturday morning. It was a cold run. I had two layers of clothing and bonnet for my shiny bald head. Every now and then I would see breath vapor or steam forming as I run. I now miss that day.

***

Do I want to return to Baguio. Yes and no.

Yes because it’s cold and good for running. That’s it. Why I might not return has more reasons mostly centered on Marcus’ perspective.

While he enjoyed the sights and adventure during the three days and two nights vacation, wheelchair access was a big issue. Sadly, there are just limitations despite our best in trying to help him out.

At the PMA camp. Stuff out of his COD game.
His first henna tattoo from the Wright Park.

Sanitation was also an issue for Marcus. He’s very picky especially when it comes to toilet cleanliness so his portable urinal was our best friend.

I on the other hand despise litter. More so now that I have to push Marcus’ wheelchair around. Burnham Park was a disappointing sight for one. Trash can be found scattered, people ignored the no spitting signs, and vermin fed on residual food dumped carelessly around the park. On the bright side. Marcus was fascinated that the rats seem unafraid of him staring at them. Well, Baguio’s next tourist attraction? Hope not.

***

Mood: 2/10 Honks! (Avocado shake next.)

Avengers: Infinity War 2X

Skip the Avengers: Infinity movie and save money. Besides that the sentence rhymes, it was my plan this weekend after our company treated us employees to a blocked screening at the nearby Vista Mall coming from a Friday night shift.

Other than having a bag of bland popcorn–I passed on the salt and flavoring–and a warm bottle of orange soda for breakfast, the movie treat was a deviation to my normal weekend diet, it also wasn’t Marcus’ idea of how his Sunday would be like.

I thought he and his mom already worked out an alternative when he said before going to bed Saturday night that he discovered he could pre-order Avengers: Infinity War on Xbox Live. Sounds like a plan, a cheaper plan of just $15. All he needs to do was wait until the movie becomes available online.

But I should’ve have known better that waiting doesn’t work for him. I learned sooner that Marcus is still looking forward to watching it in the cinema. Wifey relayed the message minutes before I hit the sack that night. “Your son asked if I could carry him to the seats if it’s just the two of us and I answered yes, of course. That’s his concern,” she said but left her statement hanging.

“So what’s your concern?” I asked, fishing for unstated needs–force work of habit kicking in. “That if I could actually carry him,” she replied half firm, half joking. We had a good laugh out of it. I know my wife’s humor as much as I know her hidden strength. I know she can carry Marcus no doubt.

So I went to bed that night still with the same initial plan–drive them to the mall, wait for them outside until the movie ends. I was ready to kill time with my Netflix downloads and spare purchasing another Avengers: Infinity War movie ticket in the process.

That last conversation stuck though. Our routine in the cinemas we’ve been following for the past years since the wheelchair kept playing inside my head until the next morning while I eat my oatmeal-raisin-peanut butter-banana combo to compensate for the other day’s toxic choice.

He came prepared for the cold.

Buy popcorn for Marcus, get snacks for us, transfer him to his movie theater seat, carry him to his wheelchair if he asked to go the toilet, then settle back again to enjoy the film. It’s been like that most times. And lately he’s gained more weight.

I need to be in the cinema. Period.

So that’s how I ended up watching the same movie twice in a row. Good thing the comfy Solenad Cinema 3 allowed me to snooze every now and then and to see Marcus enjoying everything–the Avengers and Guardians characters, Stan Lee’s cameo, Blazing Cheddar popcorn, and his favorite reclining seat–was worth spending an extra 400 pesos.

Weekend mission accomplished.

***

The Avengers: Infinity War is a dark movie and it could disappointment people especially those who expect a triumphant hero at the end. This movie is a game changer. Thanos has to die.

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Mood: 1/10 Honks! (Busy week ahead.)