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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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Realistic Reflections

This past week I had mentioned on my social media post that I hadn't experienced as much progress as I had been having. I was feeling a little discouraged. The past several weeks I have had some really encouraging and motivating progress. For the first part of the week, I just kept thinking, why isn't something happening? I was feeling pretty unmotivated, and almost nearing that feeling of just giving in because things just seemed to be plateauing. Then, I happened to think back to where I had been before this began.

I'm not sure I even shared this with anyone, but in my mind I was starting to think about what it would look like to use a wheelchair in my home. I have used one a few times after some surgeries, or major illnesses that left me especially weak. My scooter that I have is not easy to maneuver in my home. I was thinking I would have to purchase a new chair that would be easier to use around my home. That's where I was with my disease progression, it was happening faster than it had in a long time, and I was feeling weaker by the day, despite my best efforts to exercise and stay healthy. All of my tried and true tricks to keep the weakness from declining were no longer working. I was SCARED. I have fought like hell for so long to keep walking. I have really been fighting to keep walking my whole life. 

So when I thought back about the weeks leading up to my stem cell treatment, I then thought of all the progress I have made, the endurance I have gained, the mobility devices (walker) I have been able to let sit and collect dust (gladly), the stairs I've been able to climb with less exertion, the chairs and couches I can get up out of on my own, a few times without even using my arms (big progress), the big hill I tackled with no braces and no walking sticks, being able to sit up in my bed with much less effort, looking in the mirror to see a much straighter body.....THEN I felt JOY. This IS working, my body is just catching up from all the new changes. Taking a little break before the next breakthrough. That's now how I'm choosing to see this lack of new progress. 

Everyday, several times I day, I thank God, that I am still able to walk, and do things for myself and my family. A lot of my fellow MD warriors don't have those opportunities and never have. I am lucky to be walking and breathing as well as I do living with this disease. I encourage you to be thankful for your physical abilities that you have too. No matter where you are with your physical abilities, there is always someone else struggling more. Don't waste your physical abilities, whatever they may look like. Keep doing what you CAN do. Choose to believe that things will get better. I truly believe that for those of us living with Muscular Dystrophy, a cure is right around the corner. Keep pushing, keep fighting with me, and most of all, continue to walk humbly courageous with me. 

You can follow my journey on Instagram @ashinneman, or on Facebook at Amy Lawless Shinneman


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