Tag: miyoshi myopathy

More of Me

On By Chris AnselmoIn Uncategorized2 Comments

For as long as I can remember, I have weighed somewhere between 155 and 160 pounds. I rarely checked my weight growing up, as it wasn’t a major concern. If anything, I was frail as a kid. The only reason I knew my weight was beacuse it was part of my annual physical exam.

In the last three years, however, I have slowed down considerably. I sit in my wheelchair all day and barely walk anymore. As a result, to put it nicely, there is more of me now than there was three years ago.

My body image doens’t really bother me. I am more preoccupied with my mobility than how I look. However, as one chin became two, it is undeniable that I’ve put on considerable weight. It is concerning. In the last three-plus years, I have put on 25 pounds. That is not ideal.

There are three problems with this.

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Crossroads

On By Chris AnselmoIn Through My Eyes7 Comments

I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.

Oops.

I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.

At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.

I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years: Continue reading “Crossroads” →

Unsung Heroes

On By Chris AnselmoIn Through My Eyes1 Comment

November was National Family Caregivers month. Which means, of course, that I waited until December to talk about it! But better late than never. It’s an important topic.

The premise of the month is to celebrate those who care for loved ones in need of daily help. The person may be aging, disabled, or some combination of the two.

It is so great that there is a month dedicated to caregivers. They are deserving of the recongition, as caregiving truly is a sacrifice of time, energy, and emotion. When you hear of someone living with a disease or disability, people often think of the person living it. But it has an impact on everyone, including friends and family. Especially family.

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A Weekend at the National Limb Girdle Muscular Dystrophy Conference

On By Chris AnselmoIn The Reluctant Traveler4 Comments

Three weeks ago (time flies!), I had the opportunity to attend the first-ever Limb-Girdle Muscular Dystrophy conference, which took place in Chicago over Labor Day weekend. Although everyone who attended the conference had to contend with the logistical challenges of traveling over a holiday weekend, it was well worth the frustration and hassle.

This was an opportunity too good to pass up.

The idea of having a conference for all limb-girdle patients, regardless of one’s subtype, is not a new one. There are Facebook groups with thousands of members where limb-girdle patients of all subtypes communicate with one another and share advice and experiences. Many are good friends, but have never had the chance to meet in person. Until this year, there has never been an opportunity to bring all these different patients together, under one roof, for any length of time.

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A Sense of Urgency

On By Chris AnselmoIn Through My Eyes4 Comments

I reached a personal goal the other day! I finished writing the end of Part One of my memoir. (It will be a two-part book).

Only downside? My goal was to get this far by September….2018. Oops.

I am on schedule, give or take a year. Ok, ok, so it happened a little slower than I had hoped, but I had a perfectly good reason for falling off. I was busy! Busy with my job, attending conferences, going to doctor’s appointments, buying a new wheelchair, fighting insurance, getting my septum un-deviated. Although mostly it was the job. It’s a lot of work, but I enjoy what I am doing so I have no complaints there. It’s just that at the end of the day, I am usually too fried to want to write.

In the last few months, I have maximized my down time on weekends to catch up on writing. This has worked out much better than trying to write at night during the week. I am more productive writing in two days than I would have been if I forced myself to write a few hundred words each day.

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Boston

On By Chris AnselmoIn The Reluctant Traveler2 Comments

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

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Back to Zero

On By Chris AnselmoIn Through My Eyes14 Comments

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

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2019 Blog Topics – Welcome Your Input

On By Chris AnselmoIn Daily Musings2 Comments

Hi everyone,

I hope everyone is having a great start to 2019!

I am planning out my content calendar for the next few months and wanted to quickly reach out and ask my readers: Are there any topics you’d like me to write about this year? Anything related to my patient experience? Random subjects that have nothing to do with disability?

Let me know! I welcome your input.

At least, as long as it’s something I want to write about…

The Reluctant Traveler: The NORD Breakthrough Summit

On By Chris AnselmoIn The Reluctant Traveler, Through My Eyes2 Comments
On stage at the NORD Breakthrough Summit. Dr. Gupta leading the discussion on the right.

Last week, I had the exciting opportunity to speak on the opening panel at the NORD Breakthrough Summit in Washington, DC. NORD, which stands for the National Organization for Rare Disorders, is a patient advocacy organization dedicated to individuals living with rare diseases and the organizations who serve them.

The purpose of the conference was to bring together different stakeholders in the rare disease space to discuss topical issues that affect the community. The theme of the conference was “The New Era of Patient-Focused Innovation,” and my panel, titled “The Next Generation of Rare Disease Advocates”, was slated to be the keynote. I wish you could have seen my face when I found that out! It looked something like this:

As the keynote panel, we had the task of setting the tone for the entire conference. The plan was to have each of us share our personal story and how we became a rare disease advocate. Once I learned who else was on the panel, I knew we would knock it out of the park. I was thrilled to take the stage with such a distinguished group, and even more thrilled that I still qualified as “the next generation”.

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Op-Ed in the Hartford Courant

On By Chris AnselmoIn Daily Musings8 Comments

Hello everyone! I hope you are having a great Sunday.

I wanted to quickly share an opinion piece I wrote for my hometown paper, the Hartford Courant:

http://www.courant.com/opinion/insight/hc-op-insight-anselmo-getting-up-afer-dark-times-20180710-story.html

I wrote the piece on a whim, after learning about the suicide of Anthony Bourdain, who I was a big fan of and got the chance to meet back in 2012. There is a lot of despair in the world today and I felt – I hoped – that by sharing my story, I could show others that what helped me through my struggles was not some innate desire or ability, but rather a skill that everyone has – empathy. It’s a skill worth fighting for, even in this broken world.

I hope you like it!

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