The BWayne Train

Just keeping it real - and this is as real as it gets. Our buddy BWayne- Bryan Wayne Galentine-  needs a strong engine to help pull his train.  He was diagnosed with ALS- also known as Lou Gehrig's Disease- in 2017.  ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.  The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. ALS is currently terminal- over time Bryan will potentially lose his ability to speak, eat, move and ultimately breathe on his own.  All of those challenges are already presenting themselves, at a steadily increasing rate.

If you haven't caught the latest developments on Facebook - this is how ALS is currently affecting Bryan & his family, in his own words-
1.  Late last year, I had a feeding tube put in and had my port removed.  The port had been giving me nothing but trouble, risking infection. The feeding tube was just being proactive at the time.  My breathing levels were dropping to a point where if I didn't put it in, I may not be able to tolerate the surgery down the road.   So we did it.  I haven't had to actually use it yet, but those days are coming.  Each meal gets more and more exhausting.  I may start skipping a meal and doing supplements via the tube just to not wear me out so much.  
2.  I also made the difficult decision late last year to stop the Radicava infusions-  which was the one medicine that seemed to be slowing my progression.  Due to all my problems with the port/picc, I was just risking infection, and I felt that it was also making my breathing worse than it already is.  It wasn't a cure, but I did feel like it was helping,  so it was pretty disappointng to have to stop...
3.  My breathing capacity has dropped from 98% a little over a year ago, down to 45% .  In my "average Joe" understanding, to me that means I am breathing half as well as I was when first diagnosed.  So it's getting a little scary.  I now have a "Trilogy" which is basically a macdaddy kind of cpap-sort of.  I use it all night and multiple times during the day to help me catch my breath.  I also take it in the car with me if we're going to be away from home any extended period of time.
4. This week I will be getting orthotic leg braces to help me to be able to stand more sturdily when I'm out and about.
5. I use a cane now 24/7, and a "rollator"/walker for more strenuous activities.  My legs now feel like I am walking on stilts.
6. I am slowly but surely losing the use of my left hand- I am so dominantly left handed that it's not even funny.
7. We recently had a wheelchair ramp installed in our garage.  Many many thanks to all who have helped along the way.
8.  I now have a power wheelchair that I am starting to use more and more out in public.  It is just getting harder and harder- and more and more exhausting- to walk any notable distance.  

In addition to these developments, Bryan has shared that there are other upcoming needs as part of an essential support system for he and his family in their home.
1.  a wheelchair ramp in their garage - DONE
2. a smaller ramp so that Bryan can go into his back yard
3. changing carpets to hardwoods in some of their rooms
4. redoing their master bath to make it handicapped friendly
5. a whole house generator to help run medical equipment in case of an outage
6. a wheelchair accessible van
7. even mundane but really helpful things like housecleaning services 

Bryan is also going to start getting stem cell treatments.  Those treatments are not covered by insurance, and can run $1500 per treatment.

BWayne has a large circle of family & friends - if all 1900 of his Facebook friends pitched in $20 this goal would be easily reached! When we all donate, we offset the mounting financial strain and send a big bear hug to Bryan and his family.  This is the very definition of the  "findthegoodstuff"  message which Bryan tries to remind us all about on his  "Find The Good Stuff" Facebook page.

Donations

  • Anonymous 
    • $25 
    • 1 mo
  • Anonymous 
    • $20 
    • 2 mos
  • Jobie Corn 
    • $100 
    • 13 mos
  • Terri Neely 
    • $100 
    • 13 mos
  • Owen Dever  
    • $10 
    • 16 mos
See all

Fundraising team (2)

Kathy Maguire Harshbarger 
Organizer
Raised $1,830 from 18 donations
Nashville, TN
Bryan Wayne Galentine 
Team member
Raised $660 from 10 donations
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