My Phases of Living with ALS C9

I sincerely appreciate all the notes, phone calls and visits.   Your show of love has been an encouragement and a true blessing.   

I also appreciate the number of people who have reached out to ask if I’m okay.  Some are citing concern over my lack of social media postings.  I am using this post to show how I am today after a brief overview of the history living with ALS C9.  Please note that I have “voice” texted most of this post.

I have seen and experienced several miracles from the unexpected changes in this body.  I continue to be rescued and sustained in the face of critical events.

To be truthful, this body’s serious challenges began last October.  And in recent weeks, I have entered yet another stage of decline. 

Here is an abbreviated timeline:

09/2017:  Official diagnosis of ALS C9orf72.

03/2018: Entered the NIH (National Institute of Health) C9orf72 ”observation” trial in Bethesda, Maryland where I remain an active participant.

06/2018:  Began Invention Clinical Trial in Knoxville, Tennessee.

12/2018:  Completed my Intervention Trial that started 6 months prior.  This dosing extended my life with no decline for six additional months. 

12/25/18: My body resumed a slow progression in decline.

03/2019:  The last time I was able to stand.  (See the “Last Dance” post)

09/17/2019: My ability to breath dropped to short breaths.  A ventilator and cough assist machine were introduced.  Amazingly, my breathing improved!

01/17/2020:  Feeding Tube installed. (For use as needed to supplement my diet).  

02/2020:  Sleep comprised for weeks.  Results in declines in overall health.  

Today:  Adapted routine so to be able to sleep 7-9 hours with minor interruptions.  My strength has declined considerably.  I use a Hoyer Lift for anytime I need to be transferred.  I am living in my power chair.  It has been some time since I have been able to sit up on my own.  

In home Speech and Occupational Therapies continues.  I am also seen weekly by a nurse to monitor my health.

Pain never goes away.   Pain management helps in most cases to keep it under control.

The hand cramping is increasing yet I can use them!  Issues in my hands flair up even to the point of dropping things.  Best news is that I can still hug even if it’s an “air” hug.

My ability to write and type are limited.  I am trending to voice texting and voice banking (more to follow).  Except for times of fatigue, my voice quality remains excellent.

“When our weaknesses drive us to God, He fills up what is lacking—and our faith is strengthened as we experience His awesome power in our lives.”

—Charles Stanley 

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