First Place!

This afternoon, after waking up from a nap (what can I say, I get tired easily), I checked my email and learned that my blog post for the Clara Health writing contest won first place! I thought my entry was strong, but I never entertained the thought that I’d place, let alone win.

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As someone who rarely wins anything, outside of the occasional fantasy baseball league, winning this contest is a huge accomplishment for me. The cash prize certainly is nice, but even more important, the contest did a great job of highlighting and featuring an underutilized asset in the healthcare space – the patient experience. The contest was a great way to compile these experiences and showcase them to a larger, non-patient audience.

Here is a link with all the entries to the contest. It is well worth the read, and shows that there are a lot of talented patient writers out there whose voices deserve to be heard!

Invaluable

Note: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.

About three years ago, I read a news article that I thought had changed my life. A new gene therapy clinical trial was being developed for my disease, Limb-Girdle Muscular Dystrophy Type 2B (LGMD2B). I was on cloud nine. For the first time since I started experiencing muscle weakness in 2008, I felt like there was a cure on the horizon.

Reality soon set in.

Two years later, I checked in on the progress of the clinical trial – a pilot Phase 1 trial – and saw that it was still struggling to meet its recruitment goal of three patients, even though it had been open for almost a year. I groaned. I sighed. I welled up with frustration. What had once seemed like a surefire path to a cure now seemed elusive, yet another false hope on my patient journey. Reality had sunk in – this drug discovery stuff is hard.

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Paying It Forward

Blogosphere,

I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).

You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.

At this point, you probably have a few questions:

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Test Drive

This disease likes to mess with me.

I can go from months where I don’t notice any change in my strength to days where it feels like I am weakening by the hour. Over the last couple months, another wave of weakness has infiltrated my muscles, right as I was starting to adjust to my new level of strength.  I can track my decline based on the everyday activities I perform, and whether or not they are harder to do than the day before.

Lately, getting out of bed with my walker has become a chore. It requires all the upper body strength I can muster, which is not much these days. My biceps have just about shriveled away, following the lead of my triceps which dissipated a couple years back. My chest and abdominal muscles, once muscular (I’m not talking beach body, but I used to be in shape!) have been replaced by fat. I press with all my might to get up, and although I am still able to stand upright, I worry in the back of my mind about the next time. What if my arms give out or I throw out my back? It’s a long way to the floor.

There are different pieces of equipment out there to aid in the transfer and lifting process, equipment that I am going to need to entertain at some point. I also have my dad who can help me, but I can’t rely on him forever – he is going to be 70 in September and has back issues of his own. Unfortunately, every time I go through weakening fits like this, I procrastinate on getting new equipment. It is a bug in my program.

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Rare Disease Day 2018

Today is one of my favorite days of the year: Rare Disease Day. Held annually on the last day of February, it is a day to celebrate those living with rare diseases, and also to raise awareness for the many different types of rare diseases that exist in the world. And there are many.

I consider it to be one of my favorite days, not because I enjoy having a rare disease (let’s be serious!) but because it brings out all the wonderful feelings that make life so meaningful – love, community, passion – just to name a few. What you won’t find, however, is pity – just the opposite, in fact. Rare disease patients don’t want you to feel sorry for them, just to understand what it’s like to walk a mile in their shoes.

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10,000 Hours

This is a continuation of my post from earlier in the week, which you can find here.

In Malcolm Gladwell’s famous book, Outliers, he talks about several factors that set high-achievers apart from the rest of the population. One of the main takeaways of the book is something called the “10,000 Hour Rule” – basically, anyone who has ever become an expert at anything has needed to immerse themselves in a task for at least 10,000 hours. This holds whether you’re the Beatles practicing to become the greatest band of all time, or Bill Gates learning to program a computer.

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An interesting read.

Although the premise has been the subject of intense debate, what is beyond argument is that the more you practice or experience something, the more of an expert you become. It’s rather straightforward.

Assuming the 10,000 hour rule is mostly true, I boldly assert that I am an expert at being a patient with muscular dystrophy. It’s an odd thing to say, but ever since it took over my life ten years ago, it’s always been on my mind. It has changed me physically, emotionally and spiritually. Many of my experiences cannot be adequately explained to the general population, no matter how much someone wants to understand.

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Crash and Burn

My life seems to be moving in fits and starts these days. Two steps forward, one step back.

If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscle disease. Pick your favorite metaphor – life with this disease is a roller coaster, a series of peaks and valleys, a twisting and turning road. Left, right, up, down – the path is never straight or level. The lack of continuity is often maddening, and always frustrating.

I’ve learned how to keep a level head through it all, but sometimes, life can be too much. Sometimes, no matter how hard I fight, I have to admit defeat. Not a lost war, but a lost battle.

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