75
75
6

The BWayne Train

$7,805 of $35,000 goal

Raised by 76 people in 12 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.  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.
+ Read More
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!!
+ Read More
Ramp should be wrapped up this weekend.
+ Read More
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
+ Read More
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...
+ Read More
Read a Previous Update

$7,805 of $35,000 goal

Raised by 76 people in 12 months
Created August 20, 2018
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
JC
$100
Jobie Corn
2 months ago
TN
$100
Terri Neely
2 months ago
OD
$10
Owen Dever
5 months ago
MK
$50
Michael Kenny
6 months ago
LW
$100
Lori Wood
6 months ago
MF
$100
Matt Forbes
6 months ago
$100
John Briscoe
6 months ago
JK
$20
Jonathan Kolinski
7 months ago
AB
$5
Anthony Barrett
7 months ago
OD
$10
Owen Dever
7 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.