Local woman with ALS grateful for ice bucket phenomenon

FAIRLAND, Ind. (WISH) – From Larry Bird, to a next door neighbor, it’s hard not to bump into somebody who hasn’t done the ALS Ice Bucket Challenge.

It’s helped raise more than $31 million for ALS research and awareness.  24-Hour News 8 felt it very important to reach out to the ALS community in hopes of finding out more about who, not what, this money is going to help.

56-year-old Janell Mohr of Fairland, Indiana was brave enough to share her story of living with ALS.

“My mind’s not going to be affected, but my body is.  So, it’s like you’re living inside a tomb,” said Mohr.

Mohr says she stumbled up the porch stairs three years ago.  After a few doctors’ visits, someone recommended she see a neurologist. She says it never occurred to her that the diagnosis could be so serious.

“No.  No.  I thought, ‘am I getting klutzy?   Am I not exercising enough?  My legs are getting weak.’”

IU Health Neuroscience Clinic Doctor Robert Pascuzzi told Mohr in November, 2013 that she had ALS and may only have a few more years to live.

“But, there’s days you wake up and you think, this isn’t real.  This isn’t my life.  I’m still young and you shed a few tears and then you suck it up and you get moving on,” Mohr said.

Tuesday, Mohr and Dr. Puscuzzi both did the ALS Ice Bucket Challenge.  Mohr’s father-in-law, Shelby County Commissioner David Mohr, took the challenge Wednesday.

Since the ice bucket challenge started July 29th, $31.5 million have been raised.  Typically the ALS Association would raise just $1.9 million in the same time period.  Regardless of some criticism, this viral challenge is moving mountains for finding a cure.

“They may be tired of seeing people dousing their head with water.  But, have some patience for the people that have this disease.  And this is something that’s bringing it into the limelight.  So, your children and your children aren’t doomed if they have the ALS,” said Mohr.

Right now, Mohr is affected from the knees down.  She wears a brace so her toes don’t droop when she takes steps.  Doctors say she could wake up next week and be wheelchair bound.  Her husband, her children and grandchildren are her support.

“I know if I’m having a bad day I can call them and if they’re having a bad day they can call me.  I’m still mom,” said Mohr. “My husband tells me every day how much he loves me and he will stand by me no matter what.”

ALS leaves the mind intact and robs the body of its muscle function.  Typically after diagnosis, doctors say people like Mohr have two to five years to live.  Mohr plans to make the best of it.

“I’m looking at it as, ‘God, what’s your plans for my life and what do you want me to do with what I have left?’”

The bottom line is, as fun and silly as it may seem, the ALS Ice Bucket Challenge is truly making a big difference.

The challenge is not over, those who want to donate can learn more at the ALS wesbite.

The annual ALS walk is coming up on September 27th.  To learn more about the walk and find out how to register click here.

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