Now What?

I took my final steps on May 11th, when I fell in my bathroom at home and had to be helped up by paramedics. To continue trying to walk was just too risky. Two months have passed since that day, and I have had a lot of time to think about what losing the ability to walk means for my life going forward.

I see my legs every day. I can still move my toes, bend my knees, and flex the flabby remnants of my calf muscles. I can still feel the pain of tense muscles, the ache of sore hips. I still get random itches on my feet that never seem to go away. My legs are still very much a part of my life, and I am thankful I still have them.

But in the task they were designed for, to get me from point A to point B, they don’t work. They are accessories, not workhorses.

Continue reading “Now What?”

2022 Ralph and Theresa Anselmo Resilience Award

It is hard to believe that it is now year five of the Ralph and Theresa Anselmo Resilience Award. I would have sworn that I thought of the idea a couple years ago, but looking at my records, it has been going on since 2018. Time flies!

I am happy to announce that the fundraising link is now up and running, after a brief delay. (Mainly because I forgot to set a calendar reminder to reactivate it.) Here is the link.

Together, we have provided thirteen financial awards to students registered with Northeastern University’s Disability Resource Center (DRC), totalling nearly $14,000! I am very humbled and appreciatie of the support.

I know times are tough economically, so any action is appreciated, even just a share on social media.

On to year five!

The Storm

When I took a break from my blog back in February to focus on my book, I said that I would still write a post from time to time. But I didn’t mean for it to take four months!

Well, I’m back. I hope you are all doing well and find yourselves returning to pre-COVID activities. This world is in desperate need of more in-person connections and conversations. Social media is its own form of isolation and is not an accurate representation of the real world. There’s nothing quite like talking to someone in-person and pretending to listen.

I am just completing a two-week vacation. It was a staycation, but relaxing nonetheless. I live five minutes from the ocean, and there is nothing as relaxing as seeing the waves rolling onto the beach and feeling the warm breeze off the water.

Continue reading “The Storm”

Brief Hiatus

Hi everyone,

I hope your 2022 is off to a great start! We just got a foot of snow here in Connecticut on Saturday. Needless to say, I am ready for spring.

Just wanted to send out a quick update to let you all know that I am going to be taking a little time off from this blog to focus on my memoir. I’ve written about my progress in the past. It took me several years to write the first draft, but I am trying to pick up the pace on the rewrite! It is motivating to see it starting to come together, which makes it much easier to write for prolonged periods of time.

I will still write on here from time to time if properly inspired, and once the book is done, I will resume posting, especially in shameless self-promotion of the book. Rest assured of that!

Happy New Year!

Wishing my family and friends (and anonymous readers who might someday be my friends) a safe, healthy and uneventful New Year! May 2022 be just an average, unremarkable year. One can hope.

I am terrible at making New Year’s resolutions, but I do like to take stock of life at the end of the year, looking back and looking ahead.

Obviously, the world is a bit chaotic at the moment, and there is much that is out of our control. But there is also much that we can control. We can’t make all our problems go away with a magic wand, but we can still be part of the solution.

Small actions add up, even if it’s something as simple as working on your patience or showing kindness to someone who may not deserve it. Even checking in on a friend who you’ve fallen out of touch with or who may be homebound might make all the difference in that person’s life.

People expect the worst in each other these days. Show them your best. It will leave an impression, and more importantly, shines the little beams of light that will get us out of this dark time.

Happy Thanksgiving!

Happy Thanksgiving everyone!

I hope you are all doing well, or as close to well as possible given the circumstances. The pandemic is not over yet, but we have come a long way from where we were this time last year.

Thanksgiving is a time for family and friends. One of the many cruel aspects of the pandemic has been that it prevented us from being able to see one another safely for far too long. Even now, with the benefit of vaccines, we are not quite back to normal, but at least there is a light at the end of the tunnel. Humans are social creatures. It is not in our nature to be separated for so long. Video conferencing, although a wonderful technology, does not substitute for a hug or for sitting at the dinner table surrounded by good company.  

Continue reading “Happy Thanksgiving!”

Limb-Girdle Muscular Dystrophy Awareness Day

September 30th is International Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. It is a day to educate and bring attention to a group of similar conditions that affect the shoulders, hips, arms and legs. It is also a day to celebrate LGMD patients, their caregivers and family members.

I have LGMD type 2B, also known as dysferlinopathy and Miyoshi myopathy (actually there’s subtle differences between them, but for all intents and purposes, they lead to roughly the same outcome.) As of this writing, there are more than 30 subtypes of LGMD identified. They actually ran out of letters in the alphabet, so they are beginning to switch over the classifications to D1..2..3.. and R…1..2..3.. (D for dominant and R for recessive).

It is not the easiest disease in the world to live with. That is probably an understatement – it is quite difficult! You only have to look at my other blog posts to see what it’s been like to live with a weakening body. Yet, despite the difficulties, I have had the chance to meet others living with the various LGMDs and it has made all the difference in navigating the ups and downs of this condition. Many members of the community are my role models, and I try to be that to others. They are what make this day so special.

There are many resources to learn more about LGMD. The best aggregate resources are:

The LGMD Awareness Foundation

The Speak Foundation

The Muscular Dystrophy Association

For me, The Jain Foundation has been a life-changing organization, as they are working on my particular condition and have been a valued resource along my disease journey.

If you have any questions about what it’s like to live with LGMD, or regarding any other LGMD topics, I’m always happy to connect!

35

I turn 35 this week. Yikes! I am not sure how it happened. Well, I know how it happened but I am more surprised how quickly it happened. Three-and-a-half decades on earth.

Part of me still feels like a kid. I still look at the world with a curious mind. I love sports and ice cream and staying up way past my bedtime. My dream job is still to build large Lego displays all day.

On the other hand, I feel like an old man. I am an old soul to begin with, but this disease has only exacerbated my curmudgeonness (curmudgeoneity?) Staying up way past my bedtime now means going to bed at 11:30. One beer and I get a massive headache. I can’t name any song past 2015. That sort of thing.

But most striking, I feel like an old man because I actually feel like an old man. My body, once able to win hurdles races and walk for miles around Boston without breaking a sweat, is now in constant pain. I can no longer walk, and can barely stand, with assistance, for more than a few seconds.

This has been hard to reconcile with my age. 35, going on 85.

Continue reading “35”

Appearance on MDA’s Quest Podcast

MDA recently launched the Quest Podcast, hosted by Mindy Henderson, our new Editor-In-Chief of MDA’s Quest family of content. This podcast will explore issues affecting individuals living with neuromuscular disease and those who love them.

I had the pleasure of being interviewed for the inaugural podcast episode, “The Beginning: Receiving a Diagnosis”. It was a great conversation about what it’s like to receive a neuromuscular disease diagnosis, and how to deal with what comes next.

You can check it out here. Let me know what you think!

Crossroads

The beginning of the COVID-19 pandemic feels like yesterday. The calendar, however, says otherwise. March 2020 is now almost a year and a half ago. Although the origins of COVID can be traced back to late 2019, the world shut down in March, once it became clear that this was no localized outbreak, but a worldwide menace. It changed my life. It changed all our lives.

The pandemic has been a tragedy. It has been a grind, in every conceivable way. In the midst of great suffering, we have been forced to confront what is truly important in life.

Continue reading “Crossroads”