Daphne man with ALS hopeful

DAPHNE, Ala. (WALA) – With the help of The Ice Bucket Challenge that’s been soaking the nation, ALS chapters in the United States have received $31.5 million in donations between July 29 and August 19, 2014.

That means more dollars for testing and research to find a cure for the fatal neurodegenerative disease.  It’s the ultimate hope for people living with the disease like Daphne resident, Andy Musselman.

Musselman was diagnosed with ALS, or what many people call Lou Gehrig’s disease, in July of 2011.  But throughout it all he has remained positive.  “You know I look at how far I’ve progress compared to some people like the Pete Freights, who started this whole ice bucket challenge, and I’m very very blessed,” said Musselman.

ALS is an insidious disease that slowly causes your muscles to waste away.  The average life expectancy of a person with ALS is two to five years from the time of diagnosis.  However, it varies greatly from person-to-person.  Musselman was diagnosed with ALS long before Pete Frates, the 29-year-old who came up with the idea for the Ice Bucket Challenge for ALS Awareness, but the disease hasn’t progressed as fast in Musselman as it has in Frates.

“That’s the thing about this disease happens differently for everybody and it is always a challenge you never know what’s going to happen next,” Musselman explained.

Mundane tasks, like brushing his teeth or lifting a gallon of milk, are now more like a strenuous workout for Musselman.  “I mean I get up get dressed eat breakfast in the morning and I’m worn out because the muscles in my upper body have atrophied so much that when I’m up for a while I get tired.”

Prior to the diagnosis Musselman admits that had no idea what ALS was.  He thought his symptom, an odd feeling in his hands, was the onset of carpel tunnel or arthritis at the most.  But when the discomfort didn’t go away, he decided to see a doctor.  That’s when he was referred to a specialists.

“There were so many doctors, so many tests, and neurologists that Andy saw to try to figure out what it was.  So I literally went into shock.  It was very difficult to  hear.  Our daughters were two and four at the time,” said Lisa, Andy’s wife.

Since then it’s been a life of adjustments, but along the way the couple has never doubted that a cure is in the near future.  And with the success of The Ice Bucket Challenges…the Musselman’s say they have renewed hope.

“There is been virtually nothing for the ALS community and to know that all of this money is coming out now and that people are giving so generously and starting to understand what this disease is about is unbelievable and hard to describe how blessed we feel by it how excited we are by it go ahead and dump does buckets of water you know get wet have fun but just donate,” Lisa adds.

To help in the fight against Lou Gehrig’s, the couple created a team for an ALS 5k walk.  Their team, Muscles for Musselman, raised more than $11,000.

TREATMENT

Currently, Riluzole is the only drug FDA-approved for ALS. It has been shown in randomized double-blinded clinical trials to prolong life expectancy for approximately 2 to 3 months, although other, less rigorous studies have shown the drug to have a slightly greater effect.

IN ALABAMA

  • The ALS Association Alabama Chapter began in late 2004. Since that time the Chapter has served 611 persons living with ALS and their families in 63 counties.
  • The Chapter provides Care Services directly to ALS patients including: home visits; information and referrals; support groups; equipment loans; and grants for respite care, transportation and home modifications – all at no cost to the family.
  • The Chapter operates a multidisciplinary clinic for ALS symptom management with Crestwood Medical Center in Huntsville. Last May the Clinic was recognized as an ALS Treatment Center of Excellence, the “Gold Standard” in ALS care and the only clinic of its kind in Alabama. The Chapter plans to open additional clinics in central and south Alabama.
  • Last June the Chapter facilitated the first DPS (diaphragmatic pacing system) surgery in Alabama – a cutting edge treatment that enhances and extends the lives of ALS patients.
  • Research to find the cause and cure of ALS is conducted at the University of Alabama-Birmingham and the HudsonAlpha Institute for Biotechnology in Huntsville.

TAKING THE CHALLENGE

Accepting the Ice Bucket Challenge for ALS Awareness is easy. Post a video of yourself pouring a bucket of ice/water over your head to social media. Be sure to add #strikeoutALS #icebucketchallenge and #teamfratetrain to your posts.  In the video explain why you are doing it – to raise awareness and money to support the fight against ALS. Challenge your family and friends to take the challenge AND make a donation.

DONATE AND LEARN MORE

Call the ALS Alabama Association Chapter at 256-519-9030, or log on to www.ALSAlabama.org.

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