If you haven't caught the latest developments on Facebook - this is how ALS is currently affecting Bryan & his family, in his own words-
I am still here, and I am "okay". But there is no question that things are becoming more difficult by the day. I haven't been able to walk in over a year, and the days of my standing unassisted are long gone too. I can no longer shower, shave or use the restroom alone- privacy is completely out the window now.
I have lost about 90 lbs. I didn't really realize just how big I was but to look at older pics now- wow! I am almost down to what I weighed in high school. Which under normal circumstances would be awesome but not with ALS. I have burned through all my fat and now my metabolism is attacking what's left of my muscles.
I am on a ventilator 20 hours a day. Unfortunately my hands and arms are shutting down. I am left hand dominant and it is going first so I am trying to become right handed to buy me a little more time. But my right hand/arm are not far behind.
My voice is much more slurred. I am getting an eye gaze computer set up so that I will still be able to communicate once I lose my voice, but it is a learning process. I won't lie- the thought of losing the use of my hands, arms, legs and voice- essentially becoming a prisoner in my own body- is terrifying. I am trying to prepare myself mentally for what's to come.
I am still trying stem cell treatments, but I had to miss 3 treatments/6 months thanks to covid, and I unfortunately believe my progression accelerated during that time. Trying to get back on track.
Staci is an angel walking- I really don't know how she is doing all that's on her plate. My boys have been phenomenal, as have family and friends. We have finally found a caregiver that we love who is here 40 hours a week. I really can't be left alone anymore.
I continue to advocate and raise awareness for this wicked disease. It gives me purpose. I love my I AM ALS family and the overall ALS community. I just wish our paths had crossed virtually any other way. I miss seeing all my friends and family. That will change once covid is gone for good. I miss playing my guitar, fishing, swimming in the ocean, throwing a football, taking BP and shooting hoops with the boys. Live every moment like it's your last. You just never know.
There are promising treatments in the pipeline, I just have to fight and hope and pray they get approved and into my body before it's too late.
I am still trying to share my story and raise awareness through my music- Bryan Wayne. And I will always try to ask people to Find The Good Stuff and convince folks to make omelets via What's Your Omelet? Please follow my other pages if you don't already. Twitter, YouTube and IG as bryanwaynemusic, and also on IG via whatsyouromelet. This is not a pity party, I don't plan on going anywhere anytime soon. Who knows, I could be around another 10 years. I'm just trying to keep it real and catch everyone up. If I miss your birthday or don't respond quickly to your msg, hopefully now you'll have a better understanding as to why... LOVE, BW
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 getting stem cell treatments. Those treatments are not covered by insurance, and can run $2,000 per treatment.
BWayne has a large circle of family & friends - if all 3,000 of his Facebook friends pitched in $10 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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