Raising Awareness that DMD exists

Image grabbed from Muscle Dystrophy Australia

Last night one of things I made sure I discuss during our meeting was to set expectations why I would wear masks whenever I sense someone is sick in the room. It seems like a trivial concern to most but not for families with kids who could easily start to get sick, or even worse (God forbid), just because of a mere common cold.

Our son Marcus is among these kids. Since we learned he has Duchenne Muscular Dystrophy (DMD) we have been more careful. I myself turned germophobic (I can see my sister clapping, proud) just for this reason. Our house is never without alcohol, disinfectant spray, wet wipes, and surgical masks–there was sort of panic when Taal erupted and the supplies of masks ran out for days.

People see me and my wife strong but every now and then we would talk silently, not wanting Marcus to hear, about our fears sentiments, and frustrations. Having someone with a rare and progressive disease is a challenge physically and mentally but it is a good thing to see that the awareness is spreading–thanks to support groups and social media.

While we wish the cure for DMD becomes available soon, the reality is it won’t happen in our lifetime. Right now we just have to face this head on and pray that as the condition worsens we get stronger and more prepared. Keep us families with members who have rare diseases in your prayers and we’d be better.

Okay, enough of the drama, Marcus wants to play Call of Duty.

Marcus caught cold this week and still recovering. Here we are inside his room pausing from our Netflix’s Formula 1 viewing

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Mood: 4/10 Honks! (Hope Marcus gets well soon.)

Xbox for a Cause

Marcus still surprises us every now and then. Wifey and I were talking about how my work was while on our way to the mall last weekend when Marcus heard the part that I ended the workweek creating a Christmas box with my direct reports.

Curious what the box is for, Marcus asked, “What’s going inside the box?” I told him that my manager plans to sponsor a foundation for kids with cancer this coming December. Then he probed once more, “What’s cancer? Is it infectious?” I struggled to find a simple definition but I got past it. Marcus seems to have digested my explanation. “Daddy, you can donate the Xbox,” he soon replied.

I wasn’t expecting such response. He was referring to the Xbox 360 that we just pulled out and put up for sale online days ago. He was planning to save funds for something–I know he is aiming for a Nintendo Switch console so I was taken aback by what he just said.

The Xbox 360 meant a lot to us. We spent countless hours playing games together. We’ve built Minecraft worlds, we’ve slain aliens in Halo, we’ve teamed up as soldiers in Call of Duty, we’ve rocked the house with Guitar Hero and so many more. For Marcus to just let go of it after hearing about kids with cancer struck me and wifey big time.

We tagged the basic Xbox kit at Php6000 ($120) on Carousell or formerly known as OLX. At this price we’d just be saving Php15K more to get the Nintendo gaming console. So I made a compromise with Marcus. When the Xbox gets sold, half goes to him and the other goes to the foundation. He accepted the deal. It’d be win-win.

Facebook post.

On Wednesday I realized I could also sell the item on Facebook. I was right as the result was overwhelming. The post which I made public was shared by a couple of my friends and the comments were encouraging. I felt it became viral even if my past sarcastic posts got more reactions.

Buyer will be busy in the next few days.

The Xbox 360 was sold barely 24 hours after the Facebook posts. The lucky buyer who is an acquaintance at work got our entire 360 stuff–at least most of it as I kept some games as keepsakes. Marcus is now 3,000 pesos richer and I hope the other 3K goes a long way for the kids with cancer. Next on queue, Marcus’ red wheelchair.

***

Mood: 3/10 Honks! (Back on minimalism track. Somehow.)

Weight a minute

Day 30. Or 35. Whatever. Anyhow, it’s been a long while since I ran past the 10K mark not until yesterday. Thanks but no thanks to our screaming bathroom scale. What I find funny is I bought my AfterShokz for the very reason I wanted something to pump me up in my attempt to do another 21K and farther. It hasn’t happened since then until plus seven pounds later. Procrastination sucks, right?

I still do regular 5Ks, however, and I think I’m improving the form and pace is getting steady and at times a bit better. Like last weekend I did another at my favorite uphill route which was when I achieved another fastest mile. It was going downhill when I hit the new record but a win is a win.

Marcus having his first sushi.

Then there’s also Marcus being a factor. He’s just getting heavier. Still relatively slim but trust me he’s got mass–his skinny body is deceiving. Thus my plan to shift from endurance training to more on strength is becoming more compelling. I need more muscles to help Marcus’ lack of muscles.

This is why I’m getting anxious whenever I step on the bathroom scale. Half of me wants to maintain a leaner form while another half wants to bulk up and be more muscular. Like today I checked and I’m 141 lbs yet thankfully my shirts and pants still fit. Must be growing muscles then, not fats. I’d like to believe so.

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So how does it feel to gain seven pounds? To remind myself that I shouldn’t go any heavier I’m looking at weight gains in different perspective.

Gaining about three pounds is like buying frozen whole chicken and carrying it the whole day. Not much though an extra weight nevertheless.

Ten pounds on the other hand would feel like a having a grocery bag filled with five kilos of brown rice bag. This will slow one down significantly. I’d start to get worried here.

Then twenty pounds would be tougher. This is equivalent of going daily to the airport with a hand carry bag stuffed to its limit. This is the number to be avoided really.

***

Months overdue, we finally returned to the doctor to have Marcus checked with only his 2D echo test results available after giving up on him being able to successfully do the spirometry test back in January. The findings were relatively better. Marcus still has good grip, which I did not doubt as he can still hold the Xbox controllers the whole day. While he can’t stand, same amount of leg control is still present although leg extension have lessened from 60 degrees to 70. The doctor said Marcus’ arms strength is what weakened but said exercise, no weights and no resistance, may still benefit.

***

Mood: 3/10 Honks! (Having foot spa while waiting for Marcus to finish his therapy.)

Never Meant to Be

About a month ago I remember Marcus stepping out of his room. It was morning, he just woke up. His smile was all over his face despite still obviously sleepy. He walked right out of his door, hair unruly. He was ready to face the day.

The other day we found the opportunity to grab a bike. Each his own. We had friends though everyone I barely knew. But that didn’t stop us from racing one another. That afternoon was fun even if I almost fell into a muddy patch when I tried to beat Marcus by cutting off the street curb. Boy he pedalled fast, very fast.

Each day I am looking forward to all this. I know these will happen once more, I wish it’d be more often than before. At least in my dreams again.

These scenes have been very vivid lately. Everything was life-like, so real I can feel Marcus’ energy. It was the closest I can get to see Marcus without his Xbox controller, away from his spot in our old sofa. Away from his crippling DMD.

With his twist car and Duplo gun.

***

Mood: 5/10 Honks! (Been spending more time with him playing Call of Duty.)

HK Day 2: Leg Day

I was expecting to taste authentic Chinese cuisine since we landed in Hong Long but I think we didn’t had any. At the airport we ate curry, the best curry I have tasted so far, and a chicken with mushroom menu which were surprisingly very good although heavy as both were served with rice.

Then last night’s dinner was also rice and pasta that I had so much carbs to burn just on the second day so I was eager to go to the gym.

Our hotel doesn’t have the gym but I was advised it’s in one of the affiliate hotels. Disney Explorers Lodge which is less than half a kilometer away from ours appears to be where the muscles are formed but it’s not here.

A few minutes more away from the second I found myself standing in front of Hong Kong Disney Resort Hotel.

And this pink corridor leads to the gym.

Even the gym room doesn’t look like any of those I’ve seen before.

The gym has complete and functional equipment. And it was cold. Will make me pick this anytime than the humid park.

I racked up 5K on the treadmill, did some weights and returned to Hollywood Hotel. I arrived with Marcus up and awake and everyone else eager to check out for the next phase of our Hong Kong trip.

Today’s main plan was to find stuffs on sale. It would be a long day. We transferred to Stanford Hillview Hotel which we accessed mostly by HK’s train (MTR) all the way from Disneyland station. All of us were spent (and silently grumpy) when we reached Jordan train station so lunch was the immediate agenda.

It was another meal that didn’t come close to what I had in mind for Chinese food. Specifically noodles. Marcus was looking for McDonald’s and found one so we settled for it as well. Nothing special there, FYI, except for the sight of expensive cars like Ferrari, Porsche, and Teslas passing in front of the fast food that kept Marcus entertained.

Our hotel was a short taxi ride away. We could’ve even made it on foot but everyone voted against and it was good decision. We didn’t waste much time upon checking in. We hit the streets with the first challenge of wheeling Marcus on a road with 1.5 slope that extends for several meters.

Pushing the wheelchair down and up is a challenge.

Initial destination was the museum with some side trips. We passed by Kowloon Park to check out the aviary. There wasn’t much to see there except for groups of familiar Filipino faces huddling together on their day off.

We reached the museum but scrapped the plan to get inside. Firstly, it was packed, then we learned there’s a schedule, and from outside I can see stairs. Not a place for Marcus. It was just about 3 PM so we decided to take the ferry to Central Hong Kong. Learning that it’s where there’s Jollibee for Marcus and cheap chocolates were compelling enough to stay exposed to the weird weather.

Clockwise from top left: Marcus on his first ferry ride; Posing in front of Hong Kong eye; View from our room; The iconic Hong Kong skyline.

Hong Kong Central was more crowded and busier. It was common to see people dragging luggage which I later figured are meant to store stuffs that they bought from the stores. Plastics are charged extra so it pays to bring luggage if you’re in for some shopping spree.

We covered almost 18 kilometers, ferry rides included, that afternoon.

It rained heavily in the afternoon so Marcus and I had to seek shelter while wifey and her sis did the bargain hunting. After what felt like hours we saw their faces emerge from poorly lit and crowded part of Worldwide House and with them was a bag full of chocolates. Never been happier to get out of a mall.

Arrived alive at the hotel.

Sun was still up but it was almost 7 PM when we reached the hotel. By then it already felt like I have used up every extra calorie I stored from eating magic cone that Marcus didn’t finish and scoops of White Rabbit and choc mint ice cream back at the ferry station. The last stretch running and pushing Marcus up the steep road had me accept that Jollibee chicken bucket was best recovery food that evening.

***

Mood: 8/10 Honks! (Pushing away writer’s block.)

HK Day 1: Finding Mickey

Marcus once again had the opportunity to see the world outside our house, outside the country. Last weekend, with his now blue wheelchair, Marcus went to Hong Kong for his first Disneyland adventure.

The blue wheelchair gets its first airport sticker.

As expected Hong Kong was gloomy.

Our first taste of lost in translation.

Reached Disneyland Hollywood Resort Hotel to drop off our bags and go directly to the park.

First glimpse of Disneyland’s gate.

Weather was hot and humid, stress on humid. Later learned that HK being close to the sea has a lot to do with it.

Marcus watching the Toy Story parade away from the splashes.

Parade that afternoon featured Toy Story. The floats and characters sprayed water so we had to get Marcus out of range to avoid him and his wheelchair from getting soaked.

Our first Disneyland ride.

Waiting to enter the Iron Man Experience virtual ride.

Still reeling from the heart pounding virtual 3D experience.

Our check-in time at the hotel was 3 PM so we had to get out of Disneyland theme park coming from the Iron Man Experience with the plan to return right after we’ve settled.

Clockwise from top left: souvenir shop inside the hotel somehow made up for our lost opportunity to see the other Disney characters; Marcus got a discounted Simba plush toy; Food was pricey so we settled for something less expensive and doesn’t require reservation; Meal was heavy and Marcus was bored so we checked the pool out.

Hotel check-in was a breeze. We got room 6716 which has twin beds. It was comfy, so comfy that I woke up close to 8 PM. Nobody woke me up so I guess everyone wasn’t just vocal about it but the humid park wasn’t worth the return. I concur but it was a pity we didn’t see Mickey up close and personal.

The Garmin came handy in tracking places we visited. It recorded that we walked a total of 4 km just in this portion of the park.

To be continued…

***

Mood: 8/10 Honks! (Been a while since my last post. Was busy and this HK trip was a blessing. Thanks wifey.)

Marcus Got New Wheels

Marcus eventually outgrows his red wheelchair after three years. Last year he started complaining that his knees are already rubbing against the frame especially whenever I take him running with me.

My wife had this ingenious idea to cover the wheelchair’s area with bike frame foam padding. Of course, thanks to Lazada online shopping we acquired it with less effort. But it was only temporary. Marcus is growing fast, not fatter but just taller and heavier. He’s lean. He’d be about 5 feet tall if only he could stand.

He was all blue the day we got the wheelchair.

So last week, after weeks of waiting for the stock to be available, we met up with someone at the Festival Mall to purchase Marcus’ wheelchair. This time it’s blue, lighter than the old red wheelchair. And it is cheaper as well at P6000 only. Not bad except that the front wheels rub the foot rest when pulled backwards. We can deal with it.

Still using the trusty red wheelchair. Taken recently at a nearby carnival.

The new wheelchair comes with a lap belt which could come handy if ever we take it out for running. I also realize it will help when Marcus’ core muscles weaken further. Like last week he fell face first after slipping while seated. He got his lips cut but never cried–brave boy. It was scary for us though, signs of things to come. I can only pray the progression slows down.

This week is Marcus’ birthday. He’d be eleven. One day my wife asked, “What’s your wish?” “Last year I wished that I can walk, it didn’t happen,” Marcus simply replied. I looked at my wife faking a smile. His statement stings, we just don’t have an answer.

For now the wheelchair is what we have to make him mobile. We have the same wish for him, maybe dream is the appropriate word. I’m not pessimistic but I have to accept that him being able to walk will not happen in our lifetime. I just hope this new blue wheelchair brings us adventures and better memories.

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Mood: 5/10 Honks! (Monday. Marcus’ new therapy schedule.)