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Showing posts from July, 2021

About Me

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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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My Nagging Husband

Hello and welcome back! I thought it would be interesting to share my perspective on riding in the duo bike, and why I think that requires humble courage. Week two of training for the NYC marathon is this week!  Back in the spring of 2019 my husband, as I’ve mentioned before was gearing up to run the Boston marathon. He had mentioned to me before that he had seen people pushing these racing chairs in other marathons he had run, and he thought it would be fun for us to do together.  The first time I sat in a duo bike  My initial reaction was...there is no way in hell I’m doing that! The thought of all those eyes on me, staring at me, with looks of pity made my stomach turn. I actually was really just mad that he was suggesting it. And the other annoying thing was….he didn’t give up! He kept talking about it, and each time I kept turning him down.  When I joined him in Boston, there was an expo before the race, so we went there to walk around the different booths and collect the free rac

Left Behind

Hello, and welcome back. July 26   is a National Disability Independence Day, a federally recognized day to celebrate the 1990 signing of the Americans with Disabilities Act (ADA).  Before the ADA, people with disabilities were not legally entitled to reasonable accommodations, including at universities and colleges.  Did you know that? 👆 Does that make you angry? Does that make you sad? Do you question why did it take so long? Would you feel differently if it directly affected you every time you left your house?  I think you would. See, the thing with a disability is that at any point anyone can become disabled. It’s not always like my case where I’ve lived my whole life with my disability . Not everyone is born with a disability, but anyone can become disabled. If you suddenly became confined to a wheelchair wouldn’t you want things to be accessible for you ? Not only accessible, but accessible in the way that you weren’t causing a scene just because you wanted to get into a buildi

Start Spreading the News!

Hello! Welcome back. Have you heard the news?! I’m set to participate in my second marathon! Jamie and I got a coveted spot in the 50th New York City marathon in November as a duo team! This is one of our bucket list marathons to run together, and can be hard to get into, so needless to say we are over the moon! We will be running again with MDA’s Team Momentum, and raising funds for the fight against neuromuscular disease. The icing on the cake is that…..Luke is joining our team for this exciting race!  It about the hat for me, not the team!  Jamie and I first went to NYC for our first anniversary, and then also our 5th. We love it so much, and also have taken the boys there too! It will be so amazing to see NYC this way, on the bike running through all of the different neighborhoods. Doing all the touristy things! Central Park ❤️ So, the training begins. Sunrise runs every Saturday, which is our day that we train together. Jamie also trains on his own throughout the week. I plan to d

Making Lemonade

Hello! Welcome back! I’m sure most of you have heard the saying, when life gives you lemons….make lemonade. Kind of cheesy, but so true!  The thing about this saying is, it isn’t always so easy right? I feel like when I get disappointing news, I am one of those people that immediately feels defeated. I look at things in the worst possible light….I think, here we go again. I do that for about an hour or two. And THEN….. I get busy. I start brainstorming ideas on how I’m going to continue to make things work for me, and come up with ways to either temporarily or permanently adapt.  After my recent fall, I started having some heart palpitations. This isn’t totally new to me, but they came back this time pretty strong. I’m not denying that some of it could be caused by anxiety. I try to do things to help with anxiety, but it’s a constant battle.  Painting helps my anxiety  After a fall, I always get really scared to walk. On a normal day I’m almost always thinking about and calculating eve

Adapt to find your passion!

Hello, and welcome back! I was recently invited by the Muscular Dystrophy Association to be a guest on a Facebook live with a couple of other experts in the field of adaptive recreation. I was honored to be asked, but one of my first thoughts was, am I really an expert? Then I thought, well, I guess I am as much of an expert as anyone, as I have 47 years of experience! I wanted to share what I had written out for the live. I think I left a little bit of this information out during the live when I was speaking, as it is hard to remember absolutely everything I wanted to say, so here it is..... . I am a married mom of two boys who are 14 and  17. My husband and my boys are all 3 avid runners. We have a very active household, and I do my best to keep up with my part! I was first introduced to exercise when I was very young through the  form of swimming. It was a form of exercise that doctors told my parents would be safe and effective for me in maintaining my muscles as well as I coul