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The BWayne Train

$7,245 of $25,000 goal

Raised by 69 people in 5 months
Created August 20, 2018
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.  On Sept 6th, 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 us being proactive.  I don't need it today, but my breathing levels are dropping to a point where if I didn't put it in now, I may not be able to tolerate the surgery down the road.   With ALS, they always say to step one step ahead...
2.  I made the difficult decision recently 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 too much, 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's a big bummer to have to stop...
3.  My breathing capacity has dropped from 98% a year ago, to 45% as of last week.  In my "average Joe" understanding, to me that means I am breathing half as well as I was when first diagnosed.  It has actually dropped 20 points since June, so it's getting a little scary.  I have recently been put on an upgraded breathing machine, and I also now have a 2nd machine to assist me with coughing. 
4. I am getting fitted for leg braces. 
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. I am in the process of ordering a power wheelchair, it is getting harder and harder for me to walk or stand up on my own two legs without assistance.
8. We recently had a wheelchair ramp installed in our garage.  Many many thanks to all who have helped along the way.

In addition to these new 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. a tankless water heater in order for the ramp to fit in the garage 
4. changing carpets to hardwoods in some of their rooms
5. redoing their master bath to make it handicapped friendly
6. a whole house generator to help run medical equipment in case of an outage
7. a wheelchair accessible van
8. even mundane but really helpful things like housecleaning services 

BWayne has a large circle of family & friends - if all 1500 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.
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Update 5
Posted by Bryan Wayne Galentine
1 month ago
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Hello all. Haven't been on here in awhile, here is an update. My powerchair will be delivered 12/21, so it is becoming more vital that we figure out the wheelchair van situation. We do have a trailer/ramp that we can use short term but a longer term solution will become necessary. After the holidays we will begin to focus on making our master bath more handicapped friendly.

If you're local and you've seen me out and about, it's pretty clear that it's getting harder and harder to walk. Not just due to my legs, but also due to my breathing and lack of energy. Even walking from the parking lot to the bleachers at Grayson's ballgames is wearing me out. So I need to be less stubborn and start using the wheelchair more and more in public.

My breathing has been holding steady but it is in the low 40's- basically less than half what a normal level should be.

You hear a lot about "stem cells" in the news and I've had several of you inquire as to whether that is an option for me. The answer is yes and no. There is no specific FDA approved treatment for ALS yet, but one of the most promising trials out there is stem cell related, so hopefully there will be one soon. That said- there are workarounds- I have become friends with another ALS patient here locally who has had great success getting stem cell treatments with a doctor here in Nashville. Her breathing levels have gone from the low 40's like mine into the high 70's. That would be huge for me. Problem is, the treatments are not covered by insurance and they are somewhat expensive. $10K to start, and $1500 every three months thereafter. So we are trying to figure out how to make that happen after the holidays.

If you follow me, you know I am a songwriter here in Nashville- knowing ALS will eventually rob me of my ability to talk and therefore sing, I made a record and I'm excited to share that it came out last month. You can purchase hard copy cd's at www.bryanwaynemusic.com, or download it at iTunes and every other major online service. Thanks so much and Happy Holidays to all of you!!
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Update 4
Posted by Kathy Maguire Harshbarger
2 months ago
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Ramp should be wrapped up this weekend.
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Update 3
Posted by Bryan Wayne Galentine
3 months ago
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Many thanks to all who have donated here. Very humbling. I think most here know that I am a songwriter, and when I found out that ALS could take away my voice- and therefore my ability to sing- I decided to make a record, so that my wife and kids, in addition to friends and family, and who knows the world, could hear MY voice on some of MY songs forever. I am putting out my very first single from the record- Simplify- Monday, 10/22/18. It will be available on iTunes and various other online sites. The full record- 14 songs- will be available in November 2018. It would mean the world to me if you would help me spread the word! Thanks again. Love Bryan
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Update 2
Posted by Kathy Maguire Harshbarger
3 months ago
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Per Bryan- It is looking like we will be starting to build the wheelchair ramp in the garage next week. Many thanks to all who have helped...
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$7,245 of $25,000 goal

Raised by 69 people in 5 months
Created August 20, 2018
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