Ten Days of ALS – Day Ten

by | Jun 1, 2020 | ALS

TEN DAYS OF ALS AWARENESS

CONCLUSION

When I decided to take on this writing assignment for ALS Awareness Month, I first selected the ten topics in relation to life with ALS.  The intent was to use the writing as catharsis, then see how I was feeling after delving into each of the selected topics.

Day ten was left open in order to talk about things I’d learned or any ‘a-ha’ moments I’d discovered as I wrote, as well as to share some resources and links.

So much has happened in the last ten days. I can honestly say that I don’t feel like the same person I was when I started this writing assignment. Current events have my mind pulled in all different directions, and have me re-thinking so many things. (More to write about and perhaps another assignment coming soon.)

For now, I’m grateful that I challenged myself and followed through with the Ten Days of ALSIt’s gotten me back into a writing mood/mode and has helped me get some things out. Writing feels good.

As we’ve traveled on this ALS journey, I’ve appreciated those who have been very honest about the hardships of living with the disease. For me, when others share similar experiences and thoughts, it helps me feel like I’m not in this alone and that others can relate. Hopefully, my writing can do the same for someone else.

Thank you so much for following along and reading this series! I hope you have at least a little better understanding of ALS and what it means to live with it.

If you just joined in, click here if you’d like to start from Day One.

NOW WHAT?

A cure is long overdue and sadly, a promising treatment (NurOwn) is being delayed by the FDA. Obviously a cure is an ultimate goal, so research is always very important.

Raising awareness is also important, as I truly believe the more people understand about this disease, the more they will want to be a part of the solution. As we continue to share ALS info, I ask that you simply pass it along to others. Talk about it to people you know. Share our story wherever you can.

Consider what you’ve read and how the healthcare system can directly impact a person with ALS’s quality of life. For their caregivers and advocates, this is so much more work on top of caring for a loved one. As you vote in state and federal elections, learn about each candidate’s views on healthcare.

There are many organizations that are partners in the ALS fight, both in research and resources.

Below are just a few that we believe in, that understand the disease and work to assist families however they can. We are not personally affiliated with any of them in any way but I do like to share quality resources whenever I can.

There are many great organizations out there, these are the ones of which we’re most familiar, though if you’re looking to donate, any of these organizations are a great place to start.

ALS Therapy Development Institute 

I AM ALS

FACT Relief (Atlanta based)

TEAM Gleason

ALS Guardian Angels

ALS Worldwide

ALS Association (Georgia Chapter*)
*Please give to local chapters of the ALS Association, as the National Chapter has some questionable spending practices, in our opinions.

THANK YOU!!!!

Thank you again for coming along on this journey.

In case you missed any of the days in this series, here’s a list with a link for each one. The order is not important, as each topic is a stand-alone post.

Ten Days of ALS
Day One – Before ALS
Day Two – How This Got Started
Day Three – The System is Broken
Day Four – Adaptation is Key
Day Five – Getting Through it with The Three Gs (Grief, Guilt, and Guts)
Day Six – A Day in the Life
Day Seven – People Will Surprise You
Day Eight – You are the Hero of Your Story
Day Nine – Expectation vs. Acceptance
Day Ten – Conclusion (you are here!)

Feel free to reach out to us at strengthoflove61@gmail.com with any questions or anything else on your mind. You are not alone and you are stronger than you think!

photo of couple brian and jen parker. brian has a tube coming from his throat because he has als

Hi there! We’re Brian and Jen

Here we share our journey with Brian’s ALS diagnosis, along with stuff we find interesting. We just started beekeeping and love to teach what we learn as we go. Life’s crazy, best to buckle up and enjoy the ride!

CHECK OUT BRIAN’S ART

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