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.

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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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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.

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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.

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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.

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

Should We Take Our Playlist When We Run?

To plug in or not to plug in, that is the question. Everyone would agree that music does affect the way we do things. While we have individual genres, whatever that is in our playlist influences our behavior whether we’re up for a long night of school work, crunch numbers at the office, finish a writing deadline, or when we want to get in the zone during a workout.

I have this wired Phillips earphones for about 10 years already.

Whenever we want extra focus we shut the rest of world out and enter our invisible cocoon, we play our favorite song. Others seal themselves completely, almost air tight, thanks to headphones. Introverts know this better.

Back in my younger days I was a fan of earphones or headsets. Yes, those Walkman days and then MP3 players. I don’t know when I stopped but I believe it was when I realized I need to talk to people. When I became mature–let’s say that’s true.

Safety was also an issue which is why I use less of the earphones especially when I’m mobile. When I started running more and read more about this sport, it seems that the number of cons against running while plugged in outnumbers the pros. There are so much road hazards that runners need to be aware of so being able hear a wayward driver coming from behind, for one, is a big advantage.

My opinion against wearing another set of technology in the form of the earphones remained until the day I sought that extra push to hit the steep Baguio terrain. That cold early morning I took my phone, plugged my very old but trusty wired Phillips earphones and ran. That was my first time running with Arnel Pineda, Big Fat Joe, Depeche Mode, and the rest of my Napster tracks (oopps) playing along. It made the trip on the undulating road to Burnham Park and back less tiring and stressful. Music saved the day.

For days since then I was back to wondering if these bone conduction earphones I’ve heard of months ago are worth buying. But this morning I got my answer from an unlikely source. A Facebook friend not so known for being minimalist posted a YouTube video about using technology instead of it using us. For me, the video’s message was clear and it takes me away once more from the urge to run with earphones plugged. For how long though, I don’t know.

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As a frustrated writer, I also appreciate having music in the background. In my freelance days, I’ve finished countless articles, met writing deadlines with the help of the right music. And alcohol. I have likewise composed better blog post when music sets the mood and motivation.

My bluetooth headset we got in the US.

Few days ago I was contacted for a part-time writing job and so it seems that I would need to once again isolate myself for hours (if) when the job orders start coming in. Maybe that bone conduction earphone I see online is worth having after all.

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How soon before someone becomes a freelancer? I’d say ten. Last week Marcus got his first feel of his mother’s home-based job when she asked him to encode few numbers from PDF to Excel while she took her break and surprisingly, wifey said he got the numbers right. Maybe, he’ll earn his first dollars soon. Haha.

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Mood: 2/10 Honks! (900-calorie breakfast after a 5K.)

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.

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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.

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

Run Solo

I run solo.

I sign up to nothing but waking up early.

I commit to no one but two people I leave behind sleeping.

I listen to no rhythm but my heart’s.

I earn no no medal but my Garmin e-badge.

I run solo, and today I did 21K.

Yes, I’m not kidding. Cloud 9 Overload bar-powered run.

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This week’s exciting. I would be Alabang-bound most weekdays. Barely recovering from my first half marathon this morning, I decided to walk to my training’s venue without realizing it’d be quite a distance. Not that I can’t but clueless where and who to look far with 30 minutes to go wasn’t a smart idea. I made it anyway and I’m now killing time at a Starbucks on my lunch time.

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Mood: 2/10 Honks! (Hope this Venti Americano does its job.)

Run With Marcus

It’s been my dream to do something physical with Marcus, run with him. But his wheelchair sets some limits among others. Weather and outdoor condition are other factors as he’s had history of allergic reactions.

Yesterday seems to be the perfect condition although it was a bit windy late in the afternoon. We set off anyway, stepped out of the house with my running shoes and Marcus looking forward to see the goats along the way.

I ran and pushed at the first kilometer until the goats appeared. Then it was mostly run-walk from then onwards. I let Marcus cherish the moments to see nature and animals beyond Ultra HD 4K.

We conquered 200 meters. Flaring nostrils not shown.

If only we had this Adaptive Mobility Freedom Push Chairs which I saw first on Facebook page of Athletes in Tandem. This push chair would allow me to run with Marcus better and safer. His current wheelchair rattles and it poses a challenge when going uphill thus the need to take extra care not to over tilt him backwards. The mobility chair’s price is stiff though at $900 excluding shipping since it would come from USA. Maybe soon.

We covered seven kilometers yesterday so this red wheelchair is good enough for now.

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Mood: 2/10 Honks! (Today’s agenda: Learn the floss. (No) thanks to kid’s Fortnite game.)

Callused

The frequency of pull-ups I’ve been doing since I installed the Domyos pull-up bar has its downside. Yes, I now do various routines with it but all the gripping plus the weight my hands have to bear resulted to unsightly calluses.

It was something I despised at first. I was already considering workout gloves until I saw a post from Dan Kavadlo. (Duh!) His hands have far thicker calluses. I was too naive not to expect to see such with the way he does bodyweight workouts. His human flags for one are crazy.

Since then I wear my calluses with pride like my black toenails. I have to ensure though that it does not get any bigger and thicker as my wife and I take turns in giving Marcus a bath. He would always remind me to be gentle when I scrub him because he can feel my calluses and is annoyed by it. This is the reason my cube reeks of Burt’s Bees Hand Cream. Sorry about that folks.

My ugly hands.

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As it turns out, running isn’t exactly a minimalist sports that we all thought it to be. The farther I run the more I agree with expert advice that it pays to switch to a different pair of shoes every other run.

And I’m a sucker, or let’s say I’ve been assimilated. So yesterday coming from a company event in Tagaytay, while fighting lack of sleep, I dropped by Paseo de Sta. Rosa to look for running sneakers.

I was in luck. The Nike Store has an open box item and although it’s not really a stability shoes I got it anyway. Half the price markdown was convincing enough. Can’t wait to test it soon. Crossing my fingers that my toes don’t get calluses.

This should make me more visible to bad drivers.

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Mood: 1/10 Honks! (Short work week!!)