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.

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2021 Ralph and Theresa Anselmo Resilience Award

I am happy to announce that the Ralph and Theresa Anselmo Resilience Award is back for 2021! Somehow it is already Year 4.


With your support, we have been able to raise $9,400 for students registered with Northeastern University’s Disability Resource Center (DRC). This money has supported nine students with everyday living expenses, books, equipment, etc., providing a little peace of mind during a turbulent time.


I have heard from each of the students who have received an award and they are tremendously grateful for the support. This award helps put their mind at ease, and that has never been more important than in the past year. COVID has upended everyone’s lives, especially college students who have had to adjust to stay-at-home orders, quarantines, and remote classes. Northeastern students also have to frequently job hunt for co-op placements on top of everything else. College is a stressful time, even under normal circumstances.


This year, my goal is to fund four $1,000 awards for students registered with the Northeastern DRC. Even though we can see the light at the end of the tunnel now with COVID, we are not out of the woods yet. Students still have to navigate a difficult post-pandemic world in more ways than one.


As a result, this award will be more impactful than ever. Any amount of support you are able to provide is greatly appreciated, even if it’s just sharing the GoFundMe link with your network. I know times are tough. No amount is too small!


I am so thankful for all of your support. Stay safe and I hope to see you soon!

My Life In 700 Pages

Some good news after that downer that was my last post: I am finally done with the first draft of my memoir! The bad news: it currently checks in at 705 pages.

Fortunately for you the reader, the final product will not be 700 pages. I wouldn’t put you through that. I want you to buy the book after all. And enjoy it. And then recommend it to your friends. You probably don’t need to know what I ate one Wednesday night in 2012 (a burrito, for what it’s worth). A lot of the draft is blabber that needs to be cut down. Some of it serves as a placeholder to remind me what I was doing at the time, that I’ll eventually take out.

Continue reading “My Life In 700 Pages”

Final Steps

A couple weeks ago, I experienced a milestone in my disease progression that I knew was coming, but I still wasn’t quite prepared for: I stopped walking.

Technically speaking, I stopped taking steps forward. I can still shuffle around while holding onto my dad, but for all intents and purposes, I have taken my final steps.

Continue reading “Final Steps”

WEGO Health Patient Panel – Friday, February 26 at 12pm

Hi everyone!

I just wanted to let you know about an upcoming panel that I will be on to commemorate World Rare Disease Day. The WEGO Health Patient Panel is taking place on Friday, February 26th (tomorrow) at 12pm Eastern.

I will be joined by two other patient leaders in the rare disease space, Guadalupe Hayes-Mota and Lindsey Kizer.

If you would like to register, click here.

Hope to see you there!

Chris

Captain Tom, and How Age is Just a Number

On February 2, the world lost one of the heroes of the COVID-19 pandemic: Captain Sir Tom Moore. You might remember him from the early days of lockdown, when he made news for walking 100 laps in his back garden to raise money for the UK’s National Health Service (NHS).

When he began his endeavor, his goal was to raise £1,000 by his 100th birthday on April 30. Instead, he raised nearly £40 million.

Watching Captain Tom confidently grip his walker and amble around his garden was one of those hopeful, optimistic sights we clung to during those early weeks of the pandemic. It was such a simple story – an elderly man, a garden and a daily walk – but one that struck a chord in us all.

Continue reading “Captain Tom, and How Age is Just a Number”