OREGON, Wis. - Shane Gahagan of Waterford has ALS. He has a nurse who helps him every day. He has a computer that speaks for him, and a machine that breathes for him. He lies in bed 24 hours a day, 7 days a week. Shane is 42 years old.
This is a story close to TODAY'S TMJ4'S Vince Vitrano--Shane is his cousin.
Depending on your perspective, Shane is either living with, or dying from ALS. Both are true of the diagnosis he received 7 years ago.
His older brother Shawn, and Shawn's family, are committed to caring for Shane in their home near Madison.
Shawn recalls, "He was walking with a cane, and then two canes, and then next thing you know he's in a scooter, then a small chair, then a big chair, and then here we are now where he's not mobile at all."
Shane has total sensation throughout his body, but is able to move only the muscles in his face. It's the toughest physical challenge of the disease, though the physical is not the toughest challenge. The psychological struggle can be torture.
Shane speaks to us through a computer and says, "What my daughter Brooklyn is losing out on, and seeing how it affects her, plus the guilt and selfishness that I feel on the few nights that I go to bed hoping I don't wake up."
Shane's 9 year old daughter is the light of his life, and one of the things driving those dark thoughts away. Shane adds, "I feel lucky to be still alive, but sometimes the emotional pain is so strong, that I can't help but wonder if it's all worth it. Thankfully, I don't get like that very often."
The inevitability of the outcome makes it difficult to move on with ALS. It's not like other diseases where you can fight and hope to be cured. The best you can do is survive another day.
"He's beaten the curve, so to speak. That's been great. He's proven to beat it in his own sense. He's alive. He's here. He still brings joy to us. I feel we still bring joy to him," Shawn says.
The Ice Bucket Challenge has lead to more than $100 million in donations to the ALS Association.
100% of the proceeds donated to ALS Association Wisconsin Chapter will benefit Wisconsin ALS patients. Fifty percent of the donations received will go towards research, and fifty percent towards patient care services.