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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 #14

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

It has been a while since I have put out a new blog post. Life has been busy! My husband and I are working on some new projects that are coming soon for Humbly Courageous.

Writing my weekly column for the newspaper keeps my writing skills sharp. I am still working as a freelance writer for Hamilton County Tourism doing accessibility reviews. For more on those, you can check them out at https://www.visithamiltoncounty.com/blog/stories/author/amy-shinneman/66a139f164247c0b89bee6d4/

I recently had my 14th stem cell infusion. I had not had one since September 2025. I went twice as long in between treatments this time. Typically, I do infusions every four months, but I had to have surgery in December. The recovery set me back a few months. 

There was some drama with receiving my stem cells this time around. My cells are banked in a different state, so I have to have them shipped to my doctor each time. The day of my treatment, I checked my overnight delivery tracking. I noticed that they had arrived but were not moving to be delivered. This started a long day of phone calls, emails and a lot of stress! Long story short, the wrong zip code had been entered for delivery. 

There was nothing I could do in the end. My stem cells went to waste and are siting in a warehouse somewhere. They are only viable for 72 hours after they are sent to me. 

Needless to say, I was very disappointed and frustrated. I had to wait an additional two weeks to get a new appointment with my doctor, and get a new batch of cells sent.

Once I finally got my cells delivered, everything went smoothly for treatment #14 with my new doctor. I still miss Dr. J so much. I know he would be happy that I have continued along this journey.

Some updates worth mentioning since my last treatment:

My pool workout graph, seen below, shows a consistency that I am proud of  between treatments. There is a dip in there, but that is because I was not able to exercise for about 5 weeks post op. Then once I could, getting back to my baseline took time. 

Pool workout progress since starting stem cells in 2020

I also had my bone density scan to check in on my severe osteoporosis diagnosis, which I have had since I was 25 years old. I was elated to hear my doctor say that there has been significant improvement in my spinal bone density score. My hip still shows osteoporosis, but there was not a significant decline.

To be clear, I was not taking any other medication for my bones before the scan.

While I cannot definitively say that my bone density improved because of the stem cells, it does make me wonder if it did. Since starting the stem cells, I have not had any notable decrease in bone density-and actually a little improvement in the last 5 years. 

As far as walking and strength overall, I have not noticed much change. I still use my cane when out doing short errands, and I use my wheelchair for most outings when I am with others. I have to fight the urge to sit more during the day due to fatigue, and walking is even more of a chore. 

I continue to push myself but allow for the rest that my muscles seem to be demanding more these days. 

I do think that the stem cells increase my endurance for a couple months afterward. I seem to not tire quite as easily, possibly. It is hard to say for sure.

If the stems cells are helping my bones, that alone would make it worth continuing for me. 

A few of my doctors have talked to me about the promising future of stem cell treatment development in the near future. It is usually worded, “within your lifetime.” 

That is the update for now. I will share more about the “new look” for Humbly Courageous soon! 

The countdown for the Sydney Marathon has begun. Things are moving forward making that more of a reality. 

Next Saturday we take on the Indy Mini with Team Humbly Courageous. 🧡

Here is a link to my weekly column in The Hamilton County Reporter. https://readthereporter.com/author/amy-shinneman/


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