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Living with ALS: ‘I know it doesn’t define me’

Kate Hibbard
Managing Editor
khibbard@lhup.edu

 

Photo courtesy of Kyra Smith-Cullen

Photo courtesy of Kyra Smith-Cullen

“I have a one and a half year old son at home… I can’t pick him up when he cries.”

Tim Dobos, a junior majoring in applied physics and nanotechnology and a veteran of the U.S. Marine Corps, is living with Amyotrophic Lateral Sclerosis (ALS) – also known as Lou Gehrig’s Disease.

ALS  is an incurable disease that is sporadic – only about 5 percent of cases are genetic. There are no other known cases of ALS in Tim’s family.

Eventually, ALS with suffocate him.

Tim was diagnosed last April and has since been learning to balance his disease with being a student, husband and father. He feels his son’s growth is bittersweet, full of dark irony.

“He’s walking and running and smiling and laughing. He babbles a lot,” Tim said. “As Grove learned to walk, I lost my ability to walk. As he’s learning to talk, I’m losing my ability to do so.”

Tim is wheelchair-bound and, after talking for a long period of time, feels fatigued and hoarse. Just last spring, he was struggling to walk to his classes – he fell often and carrying his backpack was exhausting.

Despite his struggles, Tim is hoping to attend graduate school for a Masters degree, then follow that up with a Doctorate. After completing his education, he wants to go into neurology even though it might be difficult. He plans to study ALS because, compared to such diseases as cancer, not much research has been done for it.

“I could choose some easier way, but I don’t want to,” Tim said.

But to make it that far, Tim needs to make it to graduation. And, to be the best student he can be, he devotes a lot of time to his health.

He gets his treatments through Veterans Affairs. Many of his appointments are at a clinic in State College. However, due to a lack of equipment, Tim often has to travel to Altoona – to see specialists, or to Pittsburgh – for surgery or tests.

“Health has to take a priority over academics,” Tim said. “I desire to do well – to be the best student I can be. But I can’t do that if I’m not in good health.”

Tim said he gets through the days thanks to his family. His twin brother, Stephen, is on family medical leave from work in their hometown of Meadville, Pa. to help Tim and his wife, Robyn, with Grove. He said he also gets help from a nurse, Sarah Buttorff, and from his and Robyn’s parents.

He also wouldn’t be where he is without the community, he said. Tim has received help from the local Veterans of Foreign Wars service officers as well as LHU students like the members of Phi Mu Delta, University Players and others. He said they’re acknowledgement of his disease helps bring awareness to ALS.

“A lot of people in my situation wouldn’t want to be in the public eye, but that’s why ALS is so out of the picture. So I will gladly share my story,” Tim said. “I know ALS doesn’t define me. I’m a physicist. That’s who I am. I’m a father. I’m a brother. I’m a son.”

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One comment on “Living with ALS: ‘I know it doesn’t define me’

  1. […] Sam Shirk 2. Kayla Marsh 3. Katie Hibbard 4. Nicole Creamer 5. Quanya Myers 6. Kate White 7. Sky Carpenter and Sarah Eckrich 8. Mary Jones 9. […]

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