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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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Hope Infusion #12

Hello and welcome to Humbly Courageous! I am glad you are here.

Today I had my 12th SVF stem cell infusion. It’s hard to believe that I’m on #12! I started this process about 4 years ago. 


Of course, people often ask, “do you think it’s helping?” Seems like a simple question, but it’s really not. It’s something I go back and forth on in my mind. I usually land on the answer of, I’ll probably never know exactly how much it’s helped me. It’s hard to measure small changes that aren’t visible on the outside. As I’ve said in previous posts about these infusions, I didn’t go into this thinking it would cure me or drastically change anything. Even the smallest changes matter so much when fighting a muscle wasting disease. Any change for the better is obviously welcome.

Here’s what I’ve noticed in the last 4 months after treatment #11…

The biggest thing I’ve noticed is that after a hard day, where I’ve overexerted myself, it normally takes me several days to recover or bounce back. I have noticed that has changed. I’m much quicker to rebound from something like that recently. That is absolutely an improvement.

My workouts speak for themselves in the graph below. This last treatment (#11) in reference to my workouts, is no question the best round I’ve had. Typically, my workout performance will taper down as I get closer to my next treatment. This time, they stayed very steady even up to my last workout this morning before my treatment. Not just steady, but performance wise the best I have done since starting the treatments. This is measured by my workouts in the pool, three times per week. I am very consistent and rarely miss a workout.


I’ve also noticed that I am using my wheelchair so much less around the house. There was a period of time when I was using it daily, especially the second half of the day. This time, I find myself glancing at it at the end of the day and realizing I never used it that day. This means I’m able to push through more. It doesn’t mean that I am not feeling the fatigue that comes on the later in the day it gets. That is still very much present.

I am still using my wheelchair for any type of distance outing. I am able to walk with my cane into a store for a quick trip from time to time, but I am not able to walk much of a distance before I get extremely fatigued. 

All that to say, I have still had some really bad days where the weakness feels like it’s progressing, but usually within a day or two, I can get back to my current baseline. To me, that justifies continuing the treatments for the time being. As far as I can tell, they aren’t harming me in any way.

Humble courage means trying new things and being willing to accept the negative feedback from others who don’t believe in what you are doing. I do get some of that, and that is ok. There will always be those who thrive on proving you wrong. My thoughts are, I am 50 years old, I have lived with this disease all of those 50 years, and there is no other treatment or cure in my immediate future, and very possibly never. I want to live my time as healthy and active as I possibly can. This is all I have as an option as far as “medicine”. I’ll take it. 💚

For more on my previous treatments, you can search “Hope Infusion” on my blog to read the others.

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