Duchenne – Marcus Can Blog

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.

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.

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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.

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

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.

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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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Balloons

Timehop continues to amaze me with what it can pull up from my past posts years ago today. Some cringeworthy, some funny, some sad, and some funny kind of sad like this one from eight years ago. This was the last balloon I’ve ever bought for Marcus which got away from his grip just before we left MOA. Few years later though we’d buy balloons again for him, this time only red balloons–the symbolic red ballooons we released on our first celebration of Duchenne Awareness Day.

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We don’t have balloons today but the significance of this day remains in our hearts as we remember everyone with DMD. God bless all these children and anyone–especially their parents–who commit in making sure this progressive condition doesn’t stop them from enjoying life.

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Mood: 2/10 Honks! (That ribs for lunch…)

Genetic Testing At Last

What started as a table discussion in the US has finally materialized. Yesterday, Marcus’ genetic testing was done at UP-NIH. It took us several exchange of emails with support groups (thanks to you guys!) and hospitals and leg work that require trips to Metro Manila to exhaust our options in finding an alternative to this expensive procress. Now Marcus blood has been extracted and would soon be tested to determine if his strain is the one that the new DMD drug in the market can cure.

But testing is one thing, the medication is another. We keep our hopes high yet our expectations realistic. It’s waiting game for now until 3-4 weeks after. Que sera sera. We’ll make our next steps whatever the outcome is.

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Mood: 3/10 Honks! (Survived Tuesday.)

Watch “Canadian Tire “Wheels” :60” on YouTube

Just saw this one on Facebook and it made me sad yet at the same time happy that such campaign to let everyone know how a simple gesture could go a long way. This is something any parent with a kid in a wheelchair would appreciate big time.
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Also on Facebook, Lad Bible posted a video of a guy in a wheelchair doing dips in a gym. Looking at the weight he has to deal with is like me and Marcus combined. Dips has been one of my favorite routines since I started working out. I still do a variation of it at home and Marcus’ therapy session also includes same exercise though assisted by physical therapists. He just finished his second day today.

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Mood: 2/10 Honks! (Crazy schedule this week.)

Marcus Works Out

I can see weights. I can see treadmill. All familiar equipment so it must be a gym yet not. And as much as I’d like to I’m not returning to working out in the gym either. We are in the place that is going to be Marcus’ regular hang out for a month at the very least. It’s St. Cabrini’s rehab center. Our first time here, our first time to have him undergo physical therapy.

Our expectations are high but realistic. We hope the next sessions would improve his movements and allow him to be more independent. So that he could sit up on his own coming from bed in the morning. So he could sit straight longer. So he could extend his leg even while in a sitting position. All the basics that we tend to ignore but a struggle to kids like him.

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Mood: 2/10 Honks! (Sleepy but this is worth it.)

Climb

My time in front of the PC spilled over the weekend as I made myself useful and productive by helping out wifey with her work. Then also queueing are years of old blog posts to be migrated AND edited at the same time. I can see this same pattern happening in the weeks to come and it’s a good thing that switching from one PC to another would at least be minimized as I have once again started using Dropbox. I didn’t really appreciate the application the last time I used it on our desktop about a year or so ago but now that I have a phone that could handle more apps then I’m giving it another try. That picture of Marcus dated three years ago showing him climbing the ladder is one of the files I discovered hidden among my folders. Sigh.

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Mood: 5/10 Honks! (This left leg could be a challenge this week. Hope it gets better before the weekend so I could keep running.)

Frail

The afternoons are for cats. Marcus with Tiger.

There are things that are hard to deny, things that its progression can’t be stopped. Such is the case in Marcus’ condition. This week he felt pain on his right calf after I got him out of bed—this was the first time we’ve heard him complain about it. Every morning I get him out of bed, with his permission, by grabbing his feet. This gets his whole legs stretched besides the regular massage I give him. All the while we never had any issues except occasional request for him to stay few minutes more in bed. Concerned about the pain, I made sure since then that I pull him out by holding either on his upper legs or arms. I am more careful this time.

The good news is that Marcus still maintains a happy disposition. He smiles often and is even good at making anyone laugh at his antics and stories. He is a natural joker, he likes making his own impression of me and wifey and it cracks me up all the time. He would also share his amusing thoughts every now and then.

Despite stuck in his computer games almost the whole day every day, he continues to surprise us whenever he speaks up. “Mommy, I want to build a time machine,” he said to her one evening while preparing to sleep. “Why?” asked wifey. “So that I could go back to when I could still walk.” He also wishes to go as far back as the biblical times so he could talk to Jesus about getting healed just like in the stories from his first bible book.

He likes to make himself useful. He just finished placing stuffs in the fridge.

His mindset too has changed. If in the past he would have a big no for an answer to the idea of being a big brother, this time he reconsiders. With some conditions. “Mommy, I want you to adopt a baby girl. She should have the same complexion like mine,” he told wifey one night. “But I don’t want her to call me brother. I want to be called ‘hero’,” he added. On that same night he sent me a text message with the same demand. (It was a welcome relief from listening to awkward calls recordings.) That Xbox SIMS game he’s been playing is blessing and a curse—it made him embrace the idea of adoption.

Friends and relatives who know our stories would commend us for being strong parents. Well sometimes we are but sometimes we try hard to be–we need to. Marcus’ condition will continue unless technology makes significant findings to slow it down or better yet stop it for good. Whatever happens, we commit to continue to hold on to each other’s strengths so that we fill in each other’s weaknesses. We are hoping he won’t get frail any further soon.

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WordPress updates have been a handful lately. Every time there is a new update I would encounter a new error. This time was about FileZilla blocking most files that led me to discover an alternative–WinSCP–and it works like a charm. The interface was so simple that I was able to make wifey and Marcus update the files.

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My fans, 5 or 6 of them, were having a hard time opening this blog site when using their phones but thanks to a plugin called WPtouch the site is now mobile friendly.

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Mood: 1/10 Honks! (Exactly one more week…)

A Gathering of Kids in Wheelchairs

First meeting with the DMD Moms. (Picture posted with permission.)

In a matter of one week after we joined the FB group DMD Moms the meeting happened. On Saturday, October 8, a couple of members made it to Waltermart Makiling and it probably was one of the few times, if not the only time, this Kuya J resto location witnessed a meeting of kids in wheelchairs with their moms and dads.

Since we learned about our kid’s condition more than a year ago, this our first time to come face to face with other parents who have chosen to meet the challenge head on. These are parents, moms especially, who stared at their young boys’ dystrophy straight in the eye and commit to make the lives of their kids better against all odds.

It was a surprise that Marcus was relatively behaved. Days prior to this meeting he was so anxious, he has lots of questions. He also expressed that he plans to just wave, say hi, and shut up. But he didn’t. He interacted with almost everyone, parents and kids alike. There were some awkward moments though like when he cried when he saw the cooked shrimps—he doesn’t like to learn about animals being killed and cooked but he eats fried chicken. SSShhh. He also refused to answer some questions referring to our constant reminder not to talk to strangers. After some explanations, he got along well with the others.

We hope that this isn’t the first and the last meeting. Like any other conditions, it pays to have a support group, a group who perfectly understand what the others are going through and could possibly help one way or another. At least Marcus now knows that after all he is not alone and that he could actually have friends aside from those in school and his cousins. Kudos by the way to the crew of Kuya J for being accommodating and understanding. They even honored the individual PWD cards that we presented. Facility of this branch is also great besides tables that could have been much more wheelchair-friendly.

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Picture was taken exactly a year ago at the gym where I used to workout.

Mood: 2/10 Honks! (Wifey solved my network problem. Two heads are better than one.)

DMD Moms

It was another well-deserved Saturday morning when a notification icon on my new phone shows a red number beside it. Sooner I realized it is from the Messenger app and when I opened it there were like 5-8 messages waiting to be read. Some more than a year old already, some from people I know, others from people I choose to continue to ignore. But there’s one that caught my attention the most. It was from someone I had a chat with more than a month ago using our laptop, she invited me to join their Facebook group. I would normally shy away from such invites but this time I eagerly agreed.

It was DMD Moms. As the name implies, the group is mostly composed of moms of kids with DMD just like Marcus. This is our second online contact with others who have the same case as we do. The first one was Muscle Dystrophy Philippines but DMD Moms seems more personal and active–one you would expect when you gather a group of chatty moms. That same day, I informed wifey about it and in no time she joined the group as well.

While being the latest members of the group, it didn’t take long before we see familiar stories. Stories of despair, stories of strength, stories of hope, stories of love and commitment. According to the one who invited me, the group has currently less than 30 members, us included. We also learned that some are located close to where we live so a meeting could soon happen and when it does, it would be the first time Marcus would meet someone who also has DMD. We are looking forward to it.

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For the second time, I got a new phone courtesy of wifey. While I’m waiting for the MyPhone store to replenish its Rio batteries, wifey had secretly ordered something from Lazada. So here’s me with a new Flash Plus 2 which is more than enough to run my Kindle. Well, it made me discover the benefits of the Facebook and Messenger apps. Oh, I tried some selfie while alone at work but camera didn’t make me look good. I wonder if there’s like Photoshop or the popular beautify setting like what most of my Facebook friends use. You’ll know when I found it. Out of the box, it’s a good phone so far.

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Mood: 3/10 Honks! (Pain on my right back is almost gone.)