Never Give Up! #BrianStrong ALS
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Brian's fight with ALS is beginning to touch the lives of more people each day. He now wears his breathing machine full time and struggles with the reality that any grasp he once had on his independence is being taken away with each day as he fights to live just a little longer to help raise awareness for others with this devistating illness. Our first goal of $5k has been met, however, as Brian fights to attend press conferences and other events to raise awareness for ALS, he is faced with the dilemma of just getting around. He needs a wheelchair accessible van to carry out his dream of selflessly helping others. Money raised will provide him with a van capable of keeping him mobile....giving him the ability to keep fighting without being held prisoner to the confines of the nursing home where he currently resides. After enough is raised for a set of "wheels" to keep Brian mobile enough to follow his dreams of spreading awareness and helping others....anything contributed in his name will be donated to ALS research to help find treatments to improve the quality of other ALS patients as they are faced with this paralyzing and always fatal illness that we still know so little about. Please continue to find a place in your heart to donate....for Brian....for hope for a cure for ALS....and for an opportunity to help those faced with such a fast moving devistating illness that slowly takes away the privelages many of us enjoy to move, eat, speak and breath. Thank you for any contribution....big or small to support an illness taking the lives of so many undeserving souls! The generosity has been amazing thus far and as more of you contribute.....a new door is opened for a man 38 years old facing death too young to continue to help others with his strong spirit!!! It is so amazing to be a part of something bigger than all of us....to change the last moments Brian has with us...to help change the lives with others faced with ALS in the future!!!!! Thank you and God Bless you for all of your support. Please follow them on facebook for the latest in Brian's quest for raising awareness for ALS! https://m.facebook.com/profile.php?id=100005050128567&fref=nf
Brian's Story - shared by his sister, Adele Rene
While at the YMCA in April, and on the exercise bike, Brian's legs just stopped working properly. That's right. He was in the middle of working out and they just stopped. He drove to the YMCA, and never drove back.
I arrived to Indiana, and in seeing Brian's condition, I took him straight to the ER in shock and demanding answers. That time needed to pass for me to understand the urgency of this, and that my brother that has a developmental disability needed our help and he needed it now. By this time, it was apparent to me he had not strained a muscle at the gym. We left the hospital with a walker and were told we'd be fine. Yes, left with a walker and were told we'd be fine.
Things got worse. We decided to document detail about his symptoms. We were operating as if documenting medical illnesses was something I did as a job. Brian is a great historian of any and all detail. He's the guy that knows what happened, and on what date for all moments of his life. As a pair, we'd arrive to appointments with a 10-15 page intensive document and be told thank you so much and who wrote this for you. Knowing what we know now, and looking at what we wrote down, it's so hard to believe it was overlooked for as long as it was. BUT with ALS, knowing anything sooner wouldn't have changed the course of the disease, so it's a mute point.
Time passed with few eliminations of what it wasn't and our search continued. October 14th arrived and until then, my family and I just kept thinking "okay we realize this is bad, but we just have to keep going and digging to figure out what this is so that we can make it better." After several doctors over six months overlooked it, we searched the internet endlessly, tried to find experts, became our own experts, and ultimately brought ourselves to the ALS clinic. We were going to the ALS clinic to eliminate it, of course. Arrive at the diagnosis.
October was quite a shock as none of us expected to hear this was a terminal illness that we could do nothing about. And that inability to control it is what was creating the distress, especially for the Joneses who get things done AND have more experience with people with disabilities than any average family. We already had one brother in a wheelchair. You'd think if anyone could change it, it'd be us. Turns out it wouldn't be the case this time. So we quickly adjusted to controlling the things we could...such as our choice to live in happiness, strengthen our love for each other and have as little stress as possible on Brian. To start to take on ourselves what he was not able to - physically, mentally, emotionally. So that's what we've done. And I'm proud of us for that. I'm seeing that this experience will function differently for each family member in how it creates growth in ourselves and those around us. And it's kind of amazing and awesome to learn from. I'm seeing the spiritual sense of each brother and sister on a much deeper level, and it allows me to get to know them better, and to love them more. Anyway that's how we've gone from Point A to Point B, and I realized you may all be wondering. To you, it must seem sudden and that's it's really come out of nowhere. And you would be right. We haven't been hiding it. We never would.
In all of this, I've got to point out one thing about Brian Jones II and this disease. In these last moments...Brian's smile, despite the bullshit we read and were told, has not diminished in the least bit. He's taking it with him to the end and I don't believe I'm more grateful for anything than I am for that. He is unrelenting in the amount of light he emits. It just goes to show, no matter what people try to make you believe about your own circumstance or anyone else's, you ALWAYS have a choice for how you experience anything and everything. And that choice is yours and no one else's. Be your own leader. Be #brianstrong
Please understand, we let the love around us flow through us, and dispense it to each other and others. We get our energy by being open to receiving. We are blessed. We are grateful. Brian feels loved. So THANK YOU.
Brian's Story - shared by his sister, Adele Rene
While at the YMCA in April, and on the exercise bike, Brian's legs just stopped working properly. That's right. He was in the middle of working out and they just stopped. He drove to the YMCA, and never drove back.
I arrived to Indiana, and in seeing Brian's condition, I took him straight to the ER in shock and demanding answers. That time needed to pass for me to understand the urgency of this, and that my brother that has a developmental disability needed our help and he needed it now. By this time, it was apparent to me he had not strained a muscle at the gym. We left the hospital with a walker and were told we'd be fine. Yes, left with a walker and were told we'd be fine.
Things got worse. We decided to document detail about his symptoms. We were operating as if documenting medical illnesses was something I did as a job. Brian is a great historian of any and all detail. He's the guy that knows what happened, and on what date for all moments of his life. As a pair, we'd arrive to appointments with a 10-15 page intensive document and be told thank you so much and who wrote this for you. Knowing what we know now, and looking at what we wrote down, it's so hard to believe it was overlooked for as long as it was. BUT with ALS, knowing anything sooner wouldn't have changed the course of the disease, so it's a mute point.
Time passed with few eliminations of what it wasn't and our search continued. October 14th arrived and until then, my family and I just kept thinking "okay we realize this is bad, but we just have to keep going and digging to figure out what this is so that we can make it better." After several doctors over six months overlooked it, we searched the internet endlessly, tried to find experts, became our own experts, and ultimately brought ourselves to the ALS clinic. We were going to the ALS clinic to eliminate it, of course. Arrive at the diagnosis.
October was quite a shock as none of us expected to hear this was a terminal illness that we could do nothing about. And that inability to control it is what was creating the distress, especially for the Joneses who get things done AND have more experience with people with disabilities than any average family. We already had one brother in a wheelchair. You'd think if anyone could change it, it'd be us. Turns out it wouldn't be the case this time. So we quickly adjusted to controlling the things we could...such as our choice to live in happiness, strengthen our love for each other and have as little stress as possible on Brian. To start to take on ourselves what he was not able to - physically, mentally, emotionally. So that's what we've done. And I'm proud of us for that. I'm seeing that this experience will function differently for each family member in how it creates growth in ourselves and those around us. And it's kind of amazing and awesome to learn from. I'm seeing the spiritual sense of each brother and sister on a much deeper level, and it allows me to get to know them better, and to love them more. Anyway that's how we've gone from Point A to Point B, and I realized you may all be wondering. To you, it must seem sudden and that's it's really come out of nowhere. And you would be right. We haven't been hiding it. We never would.
In all of this, I've got to point out one thing about Brian Jones II and this disease. In these last moments...Brian's smile, despite the bullshit we read and were told, has not diminished in the least bit. He's taking it with him to the end and I don't believe I'm more grateful for anything than I am for that. He is unrelenting in the amount of light he emits. It just goes to show, no matter what people try to make you believe about your own circumstance or anyone else's, you ALWAYS have a choice for how you experience anything and everything. And that choice is yours and no one else's. Be your own leader. Be #brianstrong
Please understand, we let the love around us flow through us, and dispense it to each other and others. We get our energy by being open to receiving. We are blessed. We are grateful. Brian feels loved. So THANK YOU.
Organizer
Erin Gingerich Turner
Organizer
Denver, CO
