Thread by @kimberlyanngeo

.@Doug_Lind_Say shares being a late bloomer as a kid. He got sick a junior summer during college, he was told he had mono. His life got worse, not better. #WTFix

He realized he probably had the condition his mother had. He had long had a vision of being a man of destiny. He was in bed 22 hours a day. Walk about 50 ft. Exceeding that he would be worse. #WTFix

The medical community offered @Doug_Lind_Say no home. He looked ahead and knew he could not follow his mother’s health path. A mentor shared if you want to make whatever everyone else makes, then you can, if you want something different you have to do something different. #WTFix

He then took this approach to research his own health. Read books. Researched medical conditions. Looked for something rare since his docs would have ID’d the condition if it were common. He decided he probably had an autonomic nervous system issue. #WTFix

Looking at his medical condition as a scientist, @Doug_Lind_Say, found research around Dysautonomia. He knew the proper terminology. After he obtained a computer with online access and his life changed. Research 18 months later was successful.

Here is @Doug_Lind_Say as a college drop out, in a wheelchair, sharing insights to medical doctors about his condition. How amazing is that. So powerful. #WTFix

Researchers are under no obligation to take the idea @Doug_Lind_Say had and move forward with it. Doug understood that as a scientist you run the experiment. He knew what he had to do. Stuck with it. Then Doug found someone who cared about what he cared about. #WTFix

A year after looking for the tumor Doug was still in a bed. Still in a wheelchair and hoping they found a tumor. #WTFix

So @Doug_Lind_Say went back to literature. It took another year to find out how to take a pic of the middle of the adrenal gland. Eventually a scan was done and he had one of these 👇 #WTFix #raredisease

The scan showed both adrenal glands lit up. There were no surgeries to address the condition. He needed a surgery, but the surgery didn’t exist. @Doug_Lind_Say Inventing a Surgery to Save Your Life #WTFix

Doug moved on to create a surgery that could help him with his medical condition. He’s not a surgeon and was not a medical doctor.. He had this to go with. Would you be able to solve for your own surgical needs? #WTFix #ptexp

Rat medicine meant the world to Doug. If taking the middle of the adrenal gland worked with rats, why not him. The surgery he needed had been done on a cat at Harvard, but the doc’s literature was clear on the surgery. #WTFix

Oregon, Europe, and the search goes on for Doug to find a place for his adrenal gland surgery. #WTFix A researcher at Oregon Health Sciences Univ. helped him find a surgery that was done in dogs. 2/1 years of research. #WTFix

Home bound, bed bound for 11 years prior to @Doug_Lind_Say finally getting the surgery. #WTFix Say that out-loud, the patient waited 11 years for a solution and ID’d the solution himself. #WTFix #ptexp

After surgery he was able to walk to mass on Christmas Eve. WALK. After 11 years home bound and bed bound - the surgery, a second surgery, complications, and 14 years he thrived. @Doug_Lind_Say finished school and focused on how to make the unlikely things happen. #WTFix

What a touching, heartbreaking story. @Doug_Lind_Say shares his mother’s story. Loss of mobility, special chair being in “hot demand” when it is what she needed to get out of bed. Getting the chair happen for his mama has me in tears. #WTFix

Recognize when it counts, then never give up. What a true statement from @Doug_Lind_Say. If you think everything is going to succeed, good luck and you’ll be filled with disappointment. #WTFix

When Doug didn’t take his own advice, it almost derailed everything. The nursing home wanted to kick his mom out, moving her and transferring her would lead to her death. $540 a day extra charge because they didn’t want his mom in her place of care. #WTFix

This is horrible. The docs didn’t support her care. The caregivers didn’t want her in the pace of care and said she would just die. His mom wanted to live. Doug had to share this with his mom and family. #WTFix

Typing through tears now. Doug told him mom, trust me, and believe. I will do everything I can. Doug did not take no for an answer. He stood strong, demanded doc ordered a feeding tube, fought the battle he needed to fight. For his mom. #WTFix

Mom LIVED another 7 years. Yes, Seven. The cups are there so she can reach food. His mom never gave up when it counted. @Doug_Lind_Say didn’t give up. #WTFix

Right here - your biggest obstacle: people doing their jobs. @Doug_Lind_Say Figure out why they think you are in their way - and help them see it your way. Ask, why are they in my way? #WTFix

And where did Doug and his family and friends celebrate his mother’s life? Right in the nursing home. Yes, the same one they had to take to court to advance his mother’s care and amongst the caregivers who didn’t believe in his mother’s life. #WTFix

Thank you, @Doug_Lind_Say, for sharing your powerful journey of health. 👏🏽 I only wish my tweet thread would have captured more of your beautiful story. Very inspirational. #WTFix